Firstly, we are not doctors on here but I can give you some information.
Why do you think you have eosinphilic folliculitis? Did a doctor tell you that you have this? Regular folliculitis is cased by a bacterial infection and follows the follicules.
Eosinophilic folliculitis is Itcy red bumps on the upper part of the body. it is most often seen in people with HIV or in HIV negative but immunosuppressed or those with low T helper cells. Also, those with leukemia and lymphoma. HIV negative normal individuals in Japan can also get this.
Have you been tested for HIV? If HIV negative have you had a complete blood count? If so you would see very high red blood cells too. The diagnosis can be supported by the finding of eosinophilia but a skin biopsy is necessary to establish it. Skin biopsies reveal lymphocytic and eosinophilic inflammation around the hair follicles
The causes of infection are mite Demodex, the yeast Pityrosporum, and bacteria An autoimmune process has also been investigated.
a dermatologist diagnosed me and gave a topical steroid.we biopsied to diagnose.she did not give me antibiotics.she asked if i was preparing myself.also if my doctor was going to keep testing. i said i wasnt sure .i figured he must have a plan.she asked if i wanted her to call him and tell him to keep testing and i told her thats all right i can tell him since i had an appointment coming up.tested at 7 months still positive for nothing.hearing is starting to degrade eyesight diminishing.severe headache after long periods of physical activity muscle twitching ,muscle wasting ,numbness on side of face,burning feet ,sensitivity to loud noise .i dont understand why doctors dont help while testing they could make people aware of natural remedies to help alleviate pain from symptoms.but instead they are telling everyone its allergies or anxiety.all that did for me was cause me to lose trust and faith in my doctors so i fired them and got a new team of doctors who seem to be moving a little faster.in 8 months of research i found that the public is being misinformed about transmission of hiv.the top doctors in the world state that if the person giving oral has hiv there is a small risk of contracting the virus.they also state that during seroconversion that person would be highly contagious .therefore making the risk much greater.same thing with anal and vaginal.also people are being told that if they wear a condom there was no risk for vaginal and anal .how can anyone tell if the person has a high viral load unless you carry a rna test kit in your pocket .it would seem to be misinformation of sort for people to be told there is no risk when people are contracting hiv in these manners.i find alot of conflicting information which says that hiv does not live long outside the body but there are charts stateing that hiv can be transmitted through sharing and exchanging sex toys.providing they are not covered with a protective barrier or being cleaned before sharing.i was told myself oral was no risk .so here i am preparing myself for the worst and hoping for the best.even though it seems evident.you have helped me with answers in trhe past and i have apreciated your honest answers . the answers you provided gave me hope that if there were one person who could be honest about this topic.someone who does not skirt the issue .then there must be others and i might get an answer it just seemed to be a round about way trying to get there but i feel i am getting there ,because of your truthful answers i didnt give up . thank you mkh9
Yes, thank you. Sorry you have gotten the run around. I have had that in the past too and it isn't fun. I am a scientist (microbiologist) not a doctor, so I state the facts as I see them. I don't want to scare people but you need to be informed of all possibilities. However, anxiety does come from pain, and from some diseases. I have had it from the pain cycle and it goes hand in hand no matter how hard to you try to avoid it. I find biofeed back breathing exercises helpful. But that doesn't mean that it is the cause of your problem just like anxiety wasn't the cause of my back pain or migraines. But if you have had a 4th generation HIV test and it was negative, I would really trust that provided you had it after 17 days. If you wait for 3 months that is good too. There is no "window period with this test" because it doesn't need to wait for you to seroconvert". But it does take some time for the antigen to get high enough. Realize that it could be something else that you are missing. Yes, I think HIV dies in the environment but if there are body fluids then it may last longer as long as the virus is protected in the body fluids and doesn't get dried out. I think you need some follow up testing to see what your complete blood count and CD4 count looks like and also perhaps have to get the skin biopsy. Maybe see a hematologist.
The question is, is the Eosinophilic folliculitis only on the upper part of the body. That seems to be diagnostic. In any case I would think they would give you a topical. But the thing is if it is due to a mite instead of a bacteria it won't help. You would need a different treatment. So you need a good doctor to do the biopsy and see what is the underlying cause. So that you can get treatment. Maybe the dermatologist that gave you the diagnosis would be willing to do it and send it in to pathology that way you can get treated. At least the skin level. If the cause though is something worse such as lymphoma or leukemia that is another type of treatment. I hate to mention these possibilities. The way to find out is did you already have a complete blood count and was it normal? If not you need to get one done and maybe a bone marrow. So that is why a hematologist is important if your 4th generation test is negative. The P24 part of the 4th gen duo test tells you if you have the HIV antigen so you really don't need to quantitate the RNA. If you were immunocompromised your RNA level would go up on this test. That is why it is good. If the antibody part of the test is not working due to low immunity the P24 antigen is detected. Hope this helps. But I'm sure you are worried. I am not an alarmist and usually don't like to mention thinks like lymphoma and so forth. But, if your diagnosis is correct you need to follow this up to see what is going on. If these are clear then go from there.
i am not so much worried for myself but for my family members .my sons white blood cell count is below normal range .his doctor says she is not concerned.cbc
in range out of range reference range
white blood count 4.0 4.5-14.5 thou/ul
red blood count 5.11 4.00-6.20 mil/ul
hemaglobin 14.4 10.6-14.6 g/dl
hematocrit 39.9 32.0-43.8 %
mcv 78 73-89 fl
mch 28.2 23.0-31.0 pg
mchc 36.1h 30.0-36.0 g/dl
rdw 12.4 11.5-14.5 %
platlet count 376 200-700 thou/ul
mpv 10.5 9.4-12.5 fl
neutrophil 31.8 28.0-58.0 %
immature granulocyte 0.2 0.0-1.0 %
lymphocyte 55.9 28.0-65.0 %
monocyte 8.7 1.0-15.0 %
esinophil 3.2 0.0-10.0 %
basophil 0.2 0.0-1.0 %
neutrophil absolute 1.28l 1.50-8.50 thou/ul
immature granulocyte absolute
0.01 0.00-0.10 thou/ul
lymphocyte absolute 2.26 1.50-6.50 thou/ul
monocyte absolute 0.35 0.20-1.50 thou/ul
eosinophil absolute 0.13 0.00-0.70 thou/ul
basophil absolute 0.01 00.0-0.20 thou/ul
what do you make of this mkh9 can you give me some insight i dont care about my self at this point .this is my sons cbc any help would be greatly appreciated
The WBC (white blood cell) count is only very slightly low and the MCHC is really normal even though it is one tenth off. The Absolute neutrophil count is somewhat low. But since the WBC count is normal it is saying that fraction of the WBC's that fight infections like bacterial infection is a little low. The lymphocytes which usually fight off viruses is normal. The rest is normal. Values can fluctuate somewhat. Ask your doctor if you are concerned about it. The ranges are different from lab to lab as to how far off they can go. There are no atypical cells seen so that is really good.
Sorry, atypical cells are cells that "look' different than normal. They are seen with leukemia, anemia, lead poisoning, some genetic diseases etc.
Neutrophils usually go high with bacterial infections, viral infections can lower the neutrophils. Best not to speculate. I would ask a doctor. I still think you should see a hematologist and get this worked out.
my concern is that my son started showing symptoms after 21/2 to 3 months after my exposure a strange allergic reaction sneezing runny nose and each each week something else has surfaced .my doctors told me i was not contagious . i have lesions on my chest and i was seroconverting i did not understand at the time you are highly contagious .i stayed away from him for 21/2 to 3 months i did not let him come anywhere near me but i felt really bad because we were very close and he couldnt understand why i wouldnt hug him anymore .when i came home from work one day he ran over to me while i was changing my shirt and hugged me bare chested. i fear i may have infected him with something through repeated exposure.i warned to never touch my toothbrush ,and not to touch my towel.i know this isnt just a coincedence .i checked the roof of his mouth and he had red dots .then it progreessed to an orange palate then it turned purple and veiny on both sides now he has a bump on the back of his throat and veins also the taste buds on the back of his tongue have become huge.so we took him to see the doctor she says he is allergic to mold .then he started having trouble with speech he pauses in the middle of a word and during sentences he has to think to be able to finish the sentence he started his hearing became sensitive .he would freak out when he heard loud noises.his skin became dry he developed a rash on his face .he has become unusally clumsy and more emotional.his dr didnt even make us aware of his cbc i had to go back and request a copy im a little dissapointed we werent alerted about it.i think this should be cause for concern encephalitic conditions along with the cbc.
i stuck with my original doctors for 61/2 months .they tested at the wrong intervals they made note that i had certain indicators of hiv and even said that i might actually surprise the hell out of them .the id ithe practice looked in my throat and it prompted her to ask if i had any lesions.i said yes on my chest she said ithink i rember seeing that oh well ill just stick to my original diagnosis your welcome to get a second opinion .they did a p24 at a month and ahalf and were using elisa and western blot for the rest of my testing.none took into account that i am a construction worker and my job is very physical .i never rested i powered through my sero .suffering greatly by the time i got home everday .i was in so much pain . im going to a new id tommorrow some of the best in the area.i will ask them about the p24.i also predict a confection or superinfection. took some time of from work in the hopes of starting antibody production we tested for everything and had slight movment on hep titer and syph titer.they wouldnt show me my hiv results so i dont know what they said other than they were neg.the only reason i need a positive is so i can persaude my sons doctor to test him because it appears to me that hrough household transmission he has what i have and he could be running out of time .i dont want to start treatment i will need the money to get him diagnosed and for him to recieve help.
Well from what I see from what you just told me is that you had the P24 test at 1 month and a half which is about 45 days. If you look at this article regarding the 4th generation assay and there is a graph. If you click on the graph it will become larger. It shows that the P 24 drops about about 42-43 days. But the antibody level will still be high.
So even if your P 24 level drops your antibody level would show up.
So if you were negative with the antibody at a month and a half you are negative. Also, did you retest the HIV antibody or any test after that at 3 months? It doesn't look like you are positive for HIV. It may be something else that is causing your problem. It is good to talk to a specialist since you are having this problem but also your son is having some problems as well. BUt his CBC is pretty normal with some slight drop in his Neutrophils. Your son wouldn't get HIV the way you described it unless he had open wounds on his chest to start with . If he had normal intact skin and you had open wounds and had HIV (which you don't) he wouldn't just get it from touch his skin to your open wounds. he has to have open skin to get it. So there may be something else going on. Folliculitis itself is contagious. Espcially if it is regular folliculitis caused by Staph aureus. Then he could get that. So I wonder if that one doctor misdiagnosed the type of folluculitis you have? You also don't HIV by just saliva you have to have bloody gums and that kind of thing (regarding your tooth brush). But you are talking about the folliculitis? It is contagious and depends on what bacteria is in the follicules. It is usually Staph. But with the eosinophilic It can also be yeast or mites. They need to test the wounds if they haven't yet. If you can find out what the follicules have it would be helpful. What was your CBC like?
at one point my lymphocytes dropped from 30% to 7.7% i was concerned that this may be a reinfection due to the fact ive had prostatitis for years and bruxism.also blood in my urine and my liver has shown signs of problems for years.my son also had bruxism i noticed a couple of years ago.if this were reinfection and i was ten years out antigens would be low possibly?and if iwere suffering aids conditions lymphocytes below 12 %.i probably wouldnt produce antibodies making standard testing come up negative.?is it possible that reinfection could occur much easier than initial infection?i still think the staff auerus makes great sense .since its been going on so long we both have itchy noses and if it got into our bodies it could really raise heck couldnt it inflammation and such.i just went to one of the better id's in the state today .she surprised me in her testing choices now i will know for sure if i have any virus itself in my blood.she said she didnt think that being this far out i would get a positive .she said after 5 months.she also said that she noemally dosent run so many tests .but that i had so many symptoms she was going ot run more tests.it must have been close to 8 ounces .there were 4 large bottles we had to switch from my right arm to my left.my right ran out or something .here is a list im not sure what some of these will detect .
erythrocyte sediment rate
hcv rt-pcr quantitative
hiv1 rna viral load,qn
anaplasma phagocytophilium ab(erlichia)
babesia microti ab igg/igm titer
cd 4 profile
ant-nuclear antibody screen,reflex titer
syphilis mia reflex rpr titer and tppa
htlv 1/2 ab reflex confirmation i asked about it so she put it on there even though we arent in a location where it would be likely
Hi and well she did order a lot of blood work. I am surprised that she ordered Babesia but not lymes disease. Funny. I also don't know why she ordered the
anaplasma test in particular. The Syphilis antibody test is a good idea. I always question the RPR type test as they have a high false negative but you don't have the symptoms for secondary syphilis or even tertiary. When you first got tested for HIV what what the time frame after exposure? Which test was it at that time? I am also surprised they don't culture your folliculitis. It is strange to me to run all the expensive lab tests and not do a simple culture. Doctors love to do the expensive lab tests first. I just had a $1,000 in lab tests too and about 20 tubes taken from me. I'm glad to know I don't have a genetic reason for getting my blood clots but geese. She is doing some autoimmune check on you. FYI, I wouldn't believe a diagnosis of lupus based on the small amount of lab work. I don't think that is what she is after though.
If Staph Aurues was in your blood you would have a high fever.
So it will be good to see the answers to the results. I am sure you will have inflammation due to the skin infection. So the CRP and ESR will be high. The rest will probably be negative.
Have you ever been bitten by a tick? Do you hike a lot and go out without tick repellant? What state do you live in?
Since your son has has some symptoms it could be genetic or that you transferred some of the staph or other organism to him. I don't think you transferred HIV but a bacteria or mite. The lymphocytes being low on both of you implies hereditary disease or contagious/infectious. But I haven't heard from you that you have done anything to transfer anything to him. So, it is good to get these tests done to prove to you what is going on. Hopefully you can put it in the past. Your past low lympocyte count is very low. Why it came back up is strange. Do you live near a toxic dump or something? Work at a place that has hazardous materials?
could mold be a cause ?also there has been a question about pharyngeal gono this whole time .my previous drs i couldnty get a straight answer and when she swabbed my throat she barely got the swab in there and i coughed and she pulled away and didnt really gey a good swab culture .what type of test would tell me if i had disseminated gono .been suffering from prostitis for 10 yrs also blood in urine and ejaculate for 10 yrs also insomnia and bruxism .thought this was due to ebv.with a hint of liver issue for that long as well i dont know why my dr never tried to figure some of these things out just kinda left it in the balance.i read where ebv can cause neutrophils to be low.i dont know what to think any more .i am in so much pain right now sore neck and numbing effect to my head sinusitis i believe.someday when this is all behind me i will bring you good tidings instead of my complaints .merry x-mas mkh9
I doubt that fungi would cause the folliculitis. It is not usually a cause of this type of infection. Regarding disseminated GC usually you would have to get a joint aspiration if you had a problem with a joint or a blood culture if you had a very high fever. Etc. It can cause reactive arthritis. But if you are having a sore throat then that would be the culture to get. Blood in the urine may be a kidney infection or urinary tract infection. It can also be due to other things like cystitis, and kidney stone or polyp in the bladder. You would feel the kidney stone but maybe it is a precursor to it coming through. So there are lots of reasons for blood in the urine. Do you actually see the blood in the urine or did the urinalysis show a few red blood cells. If a few red blood cells that isn't anything to worry about. If a large amount seen on the urinalysis, then it could be a problem. Again, perhaps the neck scan and ultrasound or some other scan of the kidneys, bladder and that area to see what is going on might be a good idea.
well my results are here and i am baffled
hiv viral load is undetectable no genotyping was done due to that fact.
hep c viral load was undetectable
blood culture sterile at 2 and 5 days .what would this detect not sure of its significance.
ana phagocytophilium negative
htlv 1/2 nonreactive
syphilis mia and tppa negative
cd4+t cells absolute 726 535-1451
erythrocyte sediment rate (esr) 1 mm/hr <15
creatine kinase 206 h u/l 24-204
rheumatoid factor 11 iu/l <14
c reactive protein 0.08 mg/dl 0.00-0.49
ana screen negative
if it were staph folliculitis could it infect my nose and sinuses causing sinusitis ? would the blood culture pick it up if it had gotten into it?and if it was causing inflammatory response would it cause my ebv to act up ?the titer was high i have read that ebv can cause nueropathy .just wouldnt think the rash alone would have raised c/kthat much but i guess it could have when i was at the height of my pain.
another theory could be my immune system is taking care of this and im a controller (far fetched )
well my results are here and i am baffled
hiv viral load is undetectable no genotyping was done due to that fact.
hep c viral load was undetectable
blood culture sterile at 2 and 5 days .what would this detect not sure of its significance.
ana phagocytophilium negative
htlv 1/2 nonreactive
syphilis mia and tppa negative
cd4+t cells absolute 726 535-1451
erythrocyte sediment rate (esr) 1 mm/hr <15
creatine kinase 206 h u/l 24-204
rheumatoid factor 11 iu/l <14
c reactive protein 0.08 mg/dl 0.00-0.49
ana screen negative
if it were staph folliculitis could it infect my nose and sinuses causing sinusitis ? would the blood culture pick it up if it had gotten into it?and if it was causing inflammatory response would it cause my ebv to act up ?the titer was high i have read that ebv can cause nueropathy .just wouldnt think the rash alone would have raised c/kthat much but i guess it could have when i was at the height of my pain.
another theory could be my immune system is taking care of this and im a controller (far fetched )
do one more antibody test to rule far fetched theory out at one yr .see if i can find out when they biopsied if they know what kind of folliculitis staph or esinophil.keep checking for syphillis .maybe check for hsv1/2 again to see if it was the cause of nerve damage.molecular testing for chlamydia and gono.
would cmv with ebv raise heck like this?or some type of uti combined with ebv and a staph rash.sorry dont meen to bombard you with questions .
Hi, for the first batch of results and first questions:
This rules out a lot regarding autoimmune diseases. Also, the hepatitis, HIV, Syphilis, Babesia questions all negative. Inflammation looks good (normal CRP and sed rate) and normal immune system regarding the CD4 count. The creatinine kinase is only slightly above the normal range. It can go up that small amount with exercise and so forth. Have you had any chest pain?
So as for the nasal colonization with Staph yes you can get that with staph folliculitis. It can give you sinusitis. So a nasal/sinus culture would be good along with a culture of any of the sores you have on the body if any are left.
I don't think the rash is /was causing the EBV neuropathy. If you had it due to EBV it wouldn't be due to the folliculitis triggering it.
I don't understand your theory regarding the immune system?
You are done with Syphilis and HSV if it was 3 months or more. I can't remember now.
I don't think CMV is doing anything. Nor really EBV. I know it gets in the nerves. But what do you think it is doing specifically? It is not causing the folliculitis. That is a different issue.
Have you seen a hematologist?
haven't you already done molecular testing for GC and CT? If so no you don't need it again.
well you hear stories of certain people controlling hiv through diet and exercise one in particular is lynn lingenfelter . he is an amazing human being has never been on retrovirals and has controlled hiv through proper diet exercise and natural remedies . hes been going strong for at least 30 years now hes been undetectable . hes managed to have 2 children with his hiv negative wife and his children were born hiv negative .also in his story he had to battle pml and they said usually on retrovirals the outlook is grim and because he was not on art's it saved his life for he most likeley wouldnt have survived it.he had a stroke and he has fought back rehabilitated himself and regained fairly normal speech and still remains very active .amazingly inspiring story.
as far as epstein barr what im insinuating there is that epstein barr is a member of the herpes family. could it encephalitic epstein barr my titer was high and is basically the only positive i have so far .if i had nerve damage due to this could it cause the muscle wasting and muscle twiching .could it eplain my vision loss and my hearing loss .back to staph can it infect the sinuses as well causing sinusitis?sorry i know i dont make it easy but hard for me to concentrate with the pain.
also i was kind of vague but say mycoplasma was causing prostatitis ,and urethritis.so say i had contracted multiple infections could this have taxed my immune system to the point that it allowed my ebv to become more active causing encephalitis.
this whole thing has been very difficult i have been at the doctors almost twice a week for eight months.tommorrow i finally get to see a nuerologist .i will schedule an appointment for a hematologist this week if you think that will help.
is that the standard test urine test for gono and chlamydia molecular testing.i read things and have trouble keeping it sorted out in my mind.i was also wondering if adenoviruses could play a part in this.should i stop suggesting ideas to my drs and leave it up to them i fear i wont be able to hear or see if this persists another 8 months.walking short distances can cause muscle pain. when i sit down later to relax i feel it.
syphillis has been out to 8 months.so done .hsv havent chased that very hard i dont actually know if we tested more than once for it.i have to go to the dermatologist a third time to find out what type of folliculitis they biopsied thank you i am listening to your suggestions that is why i pushed for a neurologist at one point you had suggested it .but it took a month and a half.ok have to try to get my 4 hrs of sleep only 2 last night thank you mkh9 heaven holds a special place for people wh odo so much good for others .bless you.
Thanks. I'm glad if I help you.
1. Staph aureus can cause folliculitis and can cause nasal infections and sinusitis. You can get a nasal culture for this or they may just treat you. But it is best to get a culture to see if it is a staph because it can be caused by other bacteria like pseudomonas and fungi. Also, allergies can cause it. But you can try steaming (breathing in steam) through the nose to loosen up the sinuses and see if that starts to help. Also, nasal saline you can buy at the drug store can help. Have you had it a long time?
2. I know Epstein Barr get into the nerves. But I don't think it causes this kind of muscle wasting. The encephalitis you are talking about with EBV usually comes on within 2-3 weeks after getting it not usually years later. You would usually have a high fever.
3. You may want to get an MRI to rule out MS and some other neurological problems. The neurologist can give you a good exam to see if there is anything neurological going on. If not then I would see the hematologist. Tell him you were diagnosed with the eosinophilic folliculitis and the low neutrophils. Give them a list of your symptoms and let them go from there. Same with the neurologist. Instead of asking a lot of questions give them your symptoms and lab results and let them come up with anything. The doctors won't give you time to answer a bunch of "what if" questions. Lets see if giving them a copy of the lab results plus symptoms points them in a direction. Let them do other tests if needed. If the have nothing to say then you can ask specific questions. Be as clear as possible. Don't ask stuff you already got answers to regarding STD's these are already answered. The reason I say this is you have limited time with them and I think you got good advice so far. If they have your results it will be more interesting to see what they come up with.
4. Mycoplasma genitalium and Ureaplasma urealyticum can cause urethritis but not it won't lower your immune system enough to allow you to get encephlitis. If you got encephalitis it would be due to your white cells being low not this. But again you would have a very high fever and flu like symptoms. The fever is one key symptom.
5. You also haven't been tested for Lymes disease and its co-infections right? Chronic lyme can cause a lot of your symptoms if left untreated for a long period of time.
6.Yes urine is the standard sample for Chlamydia and Gonorrhea. So that is fine.
7. Adenovirus is a mild infection and wouldn't cause these symptoms.
Hope this answers your questions. Remember, one day at a time.
i went to the neurologist he is checking tsh weve checked that many times also hes checking magnesium and two other things cant remember what though.he sent me for a neck xray looking for pinched nerve in neck . he is going to send for my labs to check them over .
im equating the pain i get behind my eyes and in my forehead it also involves my neck .i dont know if im wrong in associting it to that but it only seems to happen when i exert myself physically.used t shovel the equvalent
That is interesting if it was a pinched nerve doing all that. You never know.
Magnesium can throw you off too. When my TSH was off I was exhausted. So worth a try I guess. They like to rule things out too.
sorry about my last reply i get so exhausted at times i cant remember if i finfished typing or not.last winter i was able to shovel the equivalent of 20 driveways in 5 hrs this winter i shovel a 25 ft sidewalk and whnen i get home my head hurts so bad i want to cry.i wish they would listen to my symptoms instead of waiting for them to go away .typing is becoming much harder now due to the fact i cant see very well any more .i have to correct alot of typo's.
they've tested my tsh that was actually perfect.i have been researching encephalitis it seem's to me to explain what i am feeling .i kept complaining to my dr's about the top half of my head feeling swollen .if it was the staff from my folliculitis getting into the sinuses could this make sense ?and you asked me how long i had it its been 8 months now.i almost lost my ability to read in my right eye without magnification.
this could also explain my sons symptoms wich his doctors are blowing off .staph in the nose. he also has itching ,trouble thinking and forming sentences he had a mysterious devlopment of allergies sneezing ,and stufffy nose for six months wich went away as mysteriously as it came.hes got a rash on his face and really dry skin.he had 3 strep tests first 2 were negative 3rd one was positive. dr gave him amoxicilin and his throat still looks the same .
i try to tell the doctorsall my symptoms and they just come into the picture and they all start the anxiety crap. once we start getting into it they change there minds.why are drs so afraid of hiv and stds that will almost immediately diagnose them as anxiety instead of investigating to see if there is actually some merit to what there patients are saying.maybe they are the ones who need to talk about there anxiety . we the patients need to be diagnosed .we dont need to wait it out until severe symptoms arise making it easier for them to diagnose.
ok that being said l have clear tiny blisters on my lips inside the mouth and bumps on the back of my throat .i was wondering if this could possibly represent herpes . could herpes out break cause my confusion malaise and wasting and twitching due to nerve damage .
maybe its time to gravitate away from hiv and check other possibilities .is it easier to detect herpes through a swab or blood test . im just feeling my nose and my throat should be swabbed and checked for gono, herpes ,staph and whatever else could have landed in my throat from deep kissing.
is strep that causes folliculitis the same strep that causes strep throat?wow i am falling asleep from typing this i will try more later thanks as always .
First I will just answer your last statement. Yeah You should gravitate away from HIV as that been proven to be a dead end. The doctors will see your results and think you have anxiety which is true regarding HIV. But the rest is related to some type of neurologic thing going on. What exactly I don't know. You folliculitis is gone now? If so that is great. Regarding Herpes. It usually infects the outer lips like a cold sore. It doesn't cause the sore throat and encephalitis like you are talking about. Have you seen an eye doctor? They can check for cataracts. Also, if you had gone swimming in any fresh water like a lake you can get some parasites that affect the eye and brain? If you have staph in your nose it is not likely to cause your other symptoms. So are you going back to the neurologist?
They seem to have to do their own testing just let them do their thing. Forget about the STD''s I don't think these are causing your symptoms as you tested negative for everything. So you have to move forward. Lets see if the neurologist can come up with anything. If he doesn't see anything wrong I would go to an infectious disease specialist. If you have already I would see another one. Don't go into any of the STD's and just mention your symptoms. You can ask about EBV see if that is a possibility or what is causing your symptoms. But first I would stick with the neurologist since your symptoms are neurological. You may want to see if they will do an MRI of the brain and/or spinal area.
Did your son ever have the eosinophilic folliculitis or just you? I am wondering if that dermatologist misdiagnosed your folliculitis as eosinophilic folliculitis. Did she say why you had eosinophilic type?
i had the pa-c or whatever that is call me this morning from the dermatologists office .she said to her it was just reguklar folliculitis .not due to any infection .she said sometimes it just happens for no reason.i told her it happened after contact with someone and i am having sinusitis and neurological issues loss of sight hearing and was wondering if this could at least cause the sinusitis.so i suggested i come back in so she could take another look .when she transferred me to the front desk she told them she was going to have me see the dr this time .so maybe i can get some results out of him .ive been using my sinus wash for 3 days and getting what seems to be great relief i can think a little more clearly.
i have the folliculitis still . the only thing i can say about my sons condition is that his nose was itchy like mine and runny and i saw a red dot at one point like one that i have on my nose that turns skin color when pressed on.now his is gone.he still has rashes on face he has a skin color rash over hos whole body not sure what .pediatrician says its just dry skin his hair is also dry now after the onset of this.
im going for a hydrogen breath test this week with my g.i.maybe alot of my symptoms are being caused by bacterial overgrowth . i have faith in this dr he schedules follow ups at specific intervals wich make sense and talks straight talk to me .i know if there is an issue with the g.i . he will find it.
ive been to 2 opthamaologists nothing in the eye .
i still have a red scrotum and a numb penis .the numbness gets worse at different times and sometimes gos away like a flare up.my urethra burns when urinating frequently cant empty bladder slow urine flow swollen prostate. not getting much sleep due to frequent urination . i let the drs work on this for 10 yrs but never got any help on it . mostly they just told me yup prostates a little aggravated.so forgive if i get frustrated with them sometimes.i know ultimately the fault is mine the best way to stay healthy is not to take foolish chances and get myself in a position of ill health
I don't understand why the doctor said it was eosinophilic folliculitis then to start with or was that a misunderstanding? That can cause a lot of distress. Regular folliculitus is usually caused by a bacterial or fungal infection (see Mayo clinic).
Sometimes it can be caused by ingrowing hairs.
So, we'll see what they say this time.
glad you saw an opthamologist.
I don't know what is causing the other problems. I am sorry about all this.
I hope they can figure this out.
the pa-c said it was regular follicullitis ,ther is no cause it sometimes just happens .this makes no sense4 unless it were esinophilic is the only one they dont know why it happens.if it were ingrown hairs i would have to have 4000 of them. maybe thats where i need to go is to the mayo clinic. my vision is becoming very badi cannot read out of my right eye any more . my vision was 20 -15 at the beginning of this.
still awaiting breath test results im going back to the urologist to test for mycoplasma.im not sure what is tested for when they test for gono and chlamydia it seems to me my drs dont communicate they test for the same two things over and over.except my g.i .ive learned more about vitamin d and dosage seems to help i take 2000 i/u 2 times a day. would it be better ? .st johns wort,coconut oil ,multivitamin,licorice root ,ginger root omeprazole,probiotic,green tea.these are my medicines. until i can get some type of answer.
Well, with the vitamin D 2000 once a day is good until they check the blood level. You may or may not need more. Everyone is different with that. Yes regular folliculitis is usually caused by a staph. So that other doctor or pa was a jerk to say that it was eosinophilic folliculitis and scare you . I have had that happen too. They are either misdiagnosis or alarmists. Yes normally they don't do the Mycoplasma genitalium and Ureaplasma urealyticum and parvum but they can cause a problem. The vision problem is a big thing though. If you have access to Mayo clinic it would great to see if they have answers to what is going on with your vision and neurological problems etc.
I wonder if it is a parasite or fungus that you got in the sinus that it up there but then you had a CT scan of the head/brain/sinus area?. It is beyond me at this point. You need to get a real doctor not a PA. I would go to the Mayo Clinic if you can and brink all your results and make a list of the symptoms you have on here. What you had and you have now. Also your son. And, hopefully they can sort it out. You need to work with a doctor who is really going to take time you.
the neurologist found inflammation in my blood he wants to test again in 2 weeks to see if it goes down.maybe he will believe me about the swelling in my brain after this .it will explain the left side of my face being bigger than the right .someone asked me if i had an abcessed tooth .the inflammation would explain my ears popping as well.im using selenium i couldnt find lavender.i have a a bump on the side of my genitals now it would appear i might have hsv2.early blood tests came up negative.coconut oil and st johns wort took away alot of the pain for me .seems to me prednisone should not have been prescribed early on by my doctor it seems it was the thing that helped wipe out my lymphocytes early on.my doctor says he wants to test again for hiv in 2 months.he said if i get a positive they wont treat me until my cd4's are at 300 .i was ready to give up on hiv.
well maybe the neurologist's interest will peak when i still show the inflammation next visit. i already knew i had it when i went to the id i saw the result and figured that out but the id never mentioned it.but we will see just did a throat swab ,and a urine culture with reflex. any thoughts as to how much selenium i can take safely.
Well the test for inflammation is usually non specific. So it could be the folliculitis causing this. But the face being bigger on one side should be noted by the doctor. I wonder if you have a clogged salivary gland? Or maxillary sinus infection. But we'll see. Let me know how your tests go. I don't know how much Selenium to use. I wouldn't use too much. It sounds like they are making some progress.
hi mkh9 just checking in to see if all is well .i still havent gotten the next inflammatory test results yet the neurologist seems to be dragging his feet i called and they said the results weren't back from the lab yet.
the pa at the dermatologist gave me an appointment to the dr in the practice a different one from the first one i saw and she says she does not see anything .the first one saw things but noted one .the pa said they were all folliuculitis and the last dr said the spots the pa saw and the first dr saw weren't there.so if i am crazy it is the fault of the drs because they are all telling me if i believe what each of them say to me that i should talk to someone.three visit's and they will not tell me what type of folliculitis it is .they are slick they keep diverting my attention from the answer .when i get home i'm like (dammit they did it again).
just looking over my latest cbc's my lymphocytes are steadily declining and my esinophils as well my lymphocyte percentage was back up to 27.5%. november 10 25.2. december 4 21.4.esinophils went from 0.5 to 0.4what causes low lymphocyte count
Hi, good to hear from you. Just wanted to respond to your first post. So, the first doctor that said it was eosinophilic folliculitis was either wrong or there was a miscommunication. But apparently no one wants to fess up to it. So, the only way they can really tell what is causing it would be to culture it. But you say it is all cleared up now? If so that is great. I hope so. Let me go back and look at your lymphocyte count again in the past and this one.
See last post.
So are you still seeing the neurologist? Your lymphocytes aren't really that low. It can be normal or an infection by a virus, bacteria, fungi or parasites. High eosinophils also can mean a parasitic infection. I can't see on here what your eosinophil count was but you say it is normal now. Do you still have the same symptoms? Muscle wasting, vision problems, fatigue,sinusitis? Some of your problems have cleared up. I wonder if you are starting to fight off whatever you had. Depends on if you still have symptoms. Have you been tested for parasites. I may have brought this up.
trying to get the neurologist to with me he found inflammation in my blood tested again to double check but dosent get back to me with results.maybe tommorrow.still pretty much the same symptoms . i still have spots on my chest legs back wich i thought or was told they were folliculitis.vision geting worse slowly.stomach is getting slightly better gerd is not so bad. i can eat more of a variety foods.muscle twiching is not as frequent.esinophils 0.4.my g.i tested for everything.he did a stool test .i wish the dermotologist would tell me what the rash is.my muscles are flaccid no tone to them.i am going to a hepatologist and a hematologist .maybe this will help.the only thing i am positive for is ebv.
Hi, I looked back at one of the original posts and you said the dermatologist you first saw (that was wrong) did a biopsy on you that said you had the eosinophilic folliculitis. Do you have a copy of that report? If not you could get the biopsy report. That would tell you the real result and whatever she told you was obviously wrong. It doesn't matter now. But what does matter is that you get the right diagnosis. You lab work doesn't show that you have it anyway. It is good you are going to a hematologist. But why the heptatologist? Just curious. Do you have hepatitis? Maybe I forgot if you said you did. So you still have some of the folliculitis? You still need to get rid of it. Maybe you should just make another appointment to see the neurologist in order to get results. I don't know. My neuro is so busy I see her every 6 months. Is your potassium ok? What about magnesium and vitamin D? Was the stool test for parasites or just for bacterial pathogens? They have to actually ask for a stool for parasites to get that done. You said you had your eyes checked and they were ok? I wonder if you should have the retina checked. How old are you? Eosinophils are ok now. When you say your muscles are flaccid do they feel weak? I am still wondering about a neuro problem. Did the neurologist do a full exam? Did they do a scan of the brain? Just trying to get a overall picture. There are so many posts now it is hard to go back and forth.
Hope these new docs can get an idea of what is going on or at least a direction to go to.
everyone has been complaining that my liver has been off for about ten years now wich is strange because i had a scare then.but i had no anxietythen but i had sweating during the day no night sweats but i attributed it to the troche the doctors told me it could cause that then the symptoms went away so i thought no more of it.but since then i have had a harder time sleeping they did find ebv then .but i also had a slightly enlarged prostate since then and the drs kept commenting on my liver.so i am thinking after ten years of comments that maybe i should have a more detailed diagnostic done since i am really feeling my liver at times.
the neurologist didnt do much for me he hit my knee with a mallet and had me count backwards.had my neck xrayed and took blood twice to check for inflammation.no mri no ct scan.
i dont think we have checked for vit d or magnesium i think i saw potassium somewhere and it looked ok.
i am 45 and had 20/ 15 at the onset of this.had my eyes checked twice no sign of anything in the eye .i cant help thinking that my dr prescribing antibiotics and prednisone could have tanked my lymphocytes .letting my ebv spring into action my titer is high .it seems to be active maybe my body is trying to regain control.
also i keep going back to the idea you gave me about the folliculitis causing inflammatory response .but the derm wont give me any answers.i had a bump on the shaft of my ***** that disappeared conveniently by the time i went back to the derm there seemed to be some smaller bumps in that area when i looked with my glasses later but i could not show the derm because i could not see them without glasses now.my pcp saw the bump and said we will just call it molluscum for now .could this also be causing an inflammatory response .i also wonder seriously if i might have a fungal thing causing rashes.i ts just by the time you get to see the derm certain rashes dissappear.
my muscles do not feel week they are just mushy and any fat content i had feels likie its gone i get cold easy and my clothes are very loose i have no padding now and bruise easily.
be careful mkh9 i dont want you to burn out .you do so much for others make sure you take care of you and thank you.
Hi, Well, I was at two dentists today. I finally think I need a root canal. So I may be rid of the tooth/gum pain soon. So when they looked at your eyes they didn't see any cataracts? Sometimes you can get them earlier if you are in the sun and don't wear sunglasses or just genetics. My sister in law just got both eyes done early. Being cold like that sounds like your thyroid is off. I am like that too always cold and tired. I haven't been like that until the last couple of years when I got hypothyroid. I have been going to the gym and got a personal trainer that works with injured people and I am feeling better but sore and tired from the workout. The point is the exercises are really helping my back pain and knee pain. So it is really worth it. Hard to believe. He is a master trainer not just the run of the mill. If you have mollucum it can really spread and itch and it takes a long time to go away. It can be spread from a sexual contact as well. Skin to skin. So maybe that is what it is. It usually has a raised center. Did you say you have been tested for Hepatitis too? Sorry if I repeat myself. These are some thoughts for now.
have a good night.
i didnt respond right away because i wanted to give you a break i know how hard you try to get to everyone as soon as you can.did you get the root canal?if so how did it go?when they looked at the eyes they said nothing in the eyes.i am not cold very often anymore mostly when i go outside because ive lost so much body fat.i see a folliculitis bump on my chest this morning but it would do no good to tell the dermatologist because if they wait a month too see it it will be gone and they will tell me i am nuts.
my immune system is fighting really hard inflammation in the blood is returning to normal levels. my alt is 58 52 is the max .i dont think hepatitis could cause the neuro issues but could cause the rashes pink spots all over body and itchy.i am still considering neurosyphilis for neuro issues it would stand to reason since they say secondary symptoms can last up to a year and i am coming up on my anniversary.it would explain the ears popping and many of the other symptoms gastro and wasting.still i cant attribute the twitching to syph or hep.
syph could also cause low lymphocytes i dont know if you have seen the rabbit study.if the lymphocytes continue to crash that would point in another direction just have to hope they level off .i got my sons bloods to a hematologist .from what they saw they are interested in seeing him this will hopefully shed some light on things and get the ball rolling .i couldnt get my support team of 3 family members and one best friend to believe that something is going on with him .its upsetting that it seems no one wants to be bothered with this but the blood wont lie .i just want my baby boy safe this has been a huge cause of stress for me .i havent had alot of experience with this drs and being sick .the dr's all say that casual contact cant transmit the things that i am testing for but i say in a household setting that it may.if it is the last thing i do i will make sure that he is figured out.
one thing i can vouche for is the immune boosting properties of garlic last night i started feeling like death again pain in the brain and facial swelling from temples to the jaw .throat swelling neck pain eye pain.i made some shrimp with garlic and it seems to wipe out the bacteria in the throat clears the pain and facial swelling .
exercise definitely helps bacteria and viruses do not fare well in oxygen rich environments .exercise increases oxygen transfer from the blood to the cells and boosts mitochondria function.if we cant get fixed at least we can do things to make ourselve's feel a little better.
sounds like you are making progress mk good luck and thank you.
Hi, don't worry about me. I answer when I can. I did have the root canal done last Friday and by Monday I went to the gym. So I'm back in business. LOL. Regarding the Syphilis question did you ever have an FTA test done? the RPR test can be falsely negative about 20% of the time due to various factors. So the FTA looks for the organism. They don't like to do this first because it cross reacts with other Treponemal bacteria. But these are usually found in other countries. So, if you haven't been out of the country it shouldn't matter. Also, if you get treated for it and it works so much the better. Of course with secondary Syphilis, there can be some damage done and being treated with antibiotic won't reverse that damage if it isn't caught early. So, it is good to see if you have have the antibody. If not well then we go on from there. It is really curious that the garlic helped a lot. Sounds like you boost your immunity or it helps what ever is irritating a nerve or something. So whatever works. I do hope your sons results are a lot better. Let me know how that goes. Yes most bacteria are "facultative" anaerobes or anaerobic in the mouth, intestines and urogenital tract. Facultative meaning they can grow in oxygen or anaerobic environment. but they prefer 5-10% CO2 not straight oxygen. There are some strict aerobic bacteria but most are on the skin or environment. Maybe we'll come up with something over time. Feel free to write. I will write when I can.
hey how are you sounds like the root canal went well back to the gym quick . i had an fta and rpr on december 26th.the dermatologist is never going to divulge her secret on the type of folliculitis .i got her to give me doxycycline for the folliculitis figuring throut this thing i really havent had much in the way of antibiotics .in the beginning they gave me prednisone wich only seemed to upset my stomach wich was upset already.
the folliculitis seems to be helping my digestive problems .also it seems to have a small effect on what is happening in my brain it makes my ear popping go away for a couple hrs sometimes and it also lessens the volume and pressure of the popping most of the time .but it just dosnt seem to have aenough oomphh to wipe it out . it helps slightly with my throat too .my burning hands and feet arent as bad as well.
when i first started taking it 4 days in my face was itching severeley and burning my feet were on fire and my face was numb on the left side . so i decided to stop taking it .kinda scared me .but a week later i decide to take it again doesnt seem to be curing me ,but alleviating certain things somewhat ill take any help i can get.my mood seems to be improving since it is clearing some of the symptoms in my gut and my brain.i have patience again.
i went to a liver specialist and she is testing me for all kinds of things .she said that maybe i should just learn to live with my unidentified illness because drs dont have time for this.so maybe i should try to find a psychiatrist to help me find methods of dealing with how to live with it .but isnt that kind of like hospice going to talk to someone while they walk you through going blind then deaf then your liver function decreasing and your kidneys starting to show failure .maybe kevorkian would have been the choice for me .maybe i should move to oregon.
well anyways ive decided im not going to give up without a fight .im going back to the gym regardless of how shameful i look now . im gonna try hopefully it will do some good .
my pcp says everything is normal in my blood so i asked for a copy anyway.
finally getting to the hematologist next week but i yhink time is going to tell the story hopefully my kidneys will hold out i know from this blood i should get back to being active. i dont see any real indicators of liver problems but the hepatologist will straighten me out with that i think.im slowly improving .
no one will take me seriously about my son he is on his second bout of strep this winter that we know of my wife gets upset with me for watching him closely but if he keeps getting strep we would not know because h would never tell us he is like me when he is sick he never complains you would never know it except for now a days he sleeps from 7 to 630 and takes naps from 430 to 530 and when hes awake he cant sit up always wants to lay down but this is not concerning to anyone arrrghh.even outside we were in the middle of building an igloo and i didnt hear him or see him so i looked around and hes laying down in the middle of the snow not playing or making snow angels .just laying there . we go to stores and sometimes he will do this on the floor in a department store if i stop to look at something . the only way to keep him upright is to keep him moving .i took him to a snowmobile shop and he curled up on a chair like a kitchen chair and proceeded to take a nap.this is not right . but drs wont even entertain the idea that something is off.he sighs all the time like he is worn out .spends alot of time resting laying down he s 8 not 70.
Good to hear from you. Was your blood sugar fasting? It is on the high side of normal. I'm really glad you are improving. I don't know what is going on with your son. How does his lab work look lately? If his results are low that would make him tired. Has he been to a hematologist. I don't recall. I hope he is okay too. He needs you so you have to stay strong for him.
i took him to an immunologist and they did not see anything overly concerning with his nuetrophils being low .he said any allergy testing was not necessary to repeat because they did an extensive workup.he also said the thing to do though would be to take another cbc to see if his nuetrophils were continuing to go down .yeaaaaay thank you dr shwarz a dr that makes sense.
so i told him that i had an appointment for my son to see a hematologist and we both agreed the hematologist would do the cbc.i told her what i suspected and from the cbc she didnt see anything overly concerning.so we know for sure its not cancer .but his wbc is in range but low monocytes are high now and mchc is still high.so at least i was able to get that far for him .
i was trying to get him to articulate whether or not he has any issues with his hearing still without presenting ideas to jade his description .i didnt want to influence him so that he would say something in the hopes of pleasing me .so i got out of him that he does not have poping in his ears but he said sometimes his ears sound like the ear lobes are folded over and covering his ears . iguess he must have tried that before . so i take that as fluctuation in his hearing wich i have.its tough for him because he wants to be a tough guy so he wont say if anything is unusual or not and with kids if they deal with it long enough they sometimes consider it normal.
hes been having character changes his laugh changed and other personality changes.
i am starting to think we will be stuck with this until something major surfaces down the rode i dont see how he can go to school and do well next year.he gets frustrated with such simple things now he cant put his shoes on the right feet anymore .just simple things hes been doing for years.it would be nice if we could get an mri with contrast.on both of us .i am hoping by some chance that i had a syphillis titer that was too high and it wouldnt register and the doxy brings it down into detection range that would be great .id be thankful to have a diagnoses
Did you say you ever had a Lyme test? Just wondering with the doxy helping and some of the symptoms.
With your son have you had him do a hearing test? also, yes I think the MRI would be a good idea after the hearing test. Also maybe a test for dyslexia? If all is normal maybe he should see a child psychologist because of his behavior. Maybe they can dig something out? Not that obviously his blood work is showing something positive. But maybe the psychologist could get something out about how he feels physically? Or if he is normal otherwise too. It is a separate issue from the health issues. Maybe he is worried about you too and acting out a bit. I don't know as I don't have kids. Just speculating.
Well, you said you have been tested for syphilllis and had an FTA done too?
I'm glad your son is ok cancer wise (big C is terrible thing to think about with a child or anyone). I am glad he is going to a hematologist.
hi mk im still searching ive lost 3 db in my right ear .vision still getting worse.if i put mass quntities of salt in my trhroat my ears stop popping for a litlle bit .seems bacterial to me .my son and i are both bruising easily now if i bang my leg the whole thing swells and turns yellow and orange for months at a time.
interesting thing is there have been several people who came in contact with me around thanksgiving who have developed mysterious illnesses .ranging from blistering rashesin the sun,
headaches ,dehydration ,seizures.and chancres.
the dixy made me feel like i may have started herxing when i took it for 4 days so i got scared and stopped taking it then i finished it anyway .i still saysomething bacterial in my throat causing vision loss .dr wont give me antibiotics he is concerned that i will need my cd4s but for what if i am blind and deaf i will be usless .i cant help wodering why i got prednisone instead in the beginning that kills your cd4s and dosent fix anything it can cause cfs .i think i need antibiotics and the hell with my cd4s if they dive then at least we know where i am headed it will just happen sooner and it will cost the insurance company sooner than later. i would like to try and remain a productive member of society .blind and deaf will make this very difficult .maybe i should look into lyme one more time .you would think six weeks of doxy would have done it.40 % of people diagnosed with aids never have a positive for hiv .but looking at my rash on my face it sure looks syphillis .my dr is concerned with my blood .the derm i thought would help me said i never lived my life and none of the rashes her other workers in her office that saw the rashes and bumps werent there that i was never in good shape and that i was delusional yet we are still finding damage to my hearing and changes in my blood .she says i never filled my shirts out and my pants always used to fall down .she says my wife never saw me lift a snowmobile into my truckby myself every weekend .600lbs.
my coworkers never lifted 1000 lb gas pumps with me .my complete existence to this point was erased with one stroke of her pen .that was a great help .lets torment the patient by making him think that hes not going to get help .when hes completley wigged out then we will tell him hes got a problem.my legs are to the point i have difficulty walking up and down stairs or hills .i hiked mt washington 2 years ago now walking up the cellar stairs is a great chore for me.
i cant get the pediatrician to take my son seriously and my dr wont call them to tell them what he suspects.i would rather he get my sons drs to moniter his blood and let me go .
Hi Jocko, I haven't heard from you in a long time. Sorry you are still having problems. Yeah, I would get tested for Lyme by PCR. Have you gotten tested at a lab called IgeneX yet? They are very good. It is much more sensitive than the serology tests because it picks up lyme at different states of the disease and the bacteria not must the immune response. It would be worth it if you can see a Lyme literate doctor in your area (LLMD). You can look for one at
Has your platelet count been low? That would account for the bruising. Have you had your protime and PTT test done? these are coagulation tests? There are other coagulation studies they can do too. What did the hematologist say last?
Yes for lyme you need to be on doxy for a couple of months straight. I am not sure what is going on with the hearing and sight. I wonder if a drug reaction caused that? Some antibiotics affect the hearing.
We need to talk more. I have to go cook. I'll re-read some of what we talked about last and see if can think of anything else. Let me know if you get the PCR test done. You may want to get the coinfections done too if you haven't yet. I don't recall. Like Erhlichia, Bartonella etc. You can look at Igenex site www.igenex.com and see their tests or google Igenex
i will try to do the igenex testing i havent yet .the hematologist wrote me off my dr says he wont give me antibiotics because im going to need my cd4s
ijust got the results from my liver biopsy inflammation and some hepatitis .not sure exactly what to think about that but dosent hep cause hepatitis ?
if i go back to my blood testing i had antibodies for syph and hep .hep could be a cause of burning hands and feet and itching skin .otosyphillis could cause the fluid filled rashes on my face and fluctuating hearingloss and vision loss also they both can cause wasting.
i just know that there is something in my throat that is driving me crazy the only way i can calm it down is to use peppermint and garlic and tomatoes and coconut oil and i can knock it down enough to stop the popping in my ears for a short while so i feel it is bacterial ie otosyphillis .but he wont try penicillen .the ent says the hearing loss could be normal for someone my age but everyone else notices the difference in my hearing to be a very recent thing .so i guess we wait until i lose another 3 db .i can barely hear the keys on my keyboard makes it hard to enjoy music now.
Hepatitis can be from the virus that causes hepatitis or it can also just be inflammation of the liver due to other causes not by a virus. Do you actually have viral Hepatitis? Or was that just immunity to it? Weren't you negative for syphilis? Syphilis usually causes rash on the hands and feet.
i have inflammation the dr said from a virus she is doing more tests. not everyone gets trext book rashes from syphillis it makes a great deal of difference if the infection enters through the genitals or the mouth.you can get a chancre and if it dosent enter the 2nd stage you might not ever get the rashes .som etimes patients have gotten rashes over there entire body .im sure that you have heard this too.you must know about the fluid filled rashes that can occur on the fore head?i dont think that hep would cause my ears to pop would it .have you reasearched otosyphillis.because honestly it seems to fit my rashes and my symptoms almost identically.i have something in my throat it is bacterial but it is to strong to get rid of it keeps coming back and it is the reason my ears pop if i knock it down my ears stop for a while.it started after kissing the throat got really dry feeling i thought nothing of it then 2 weeks later i was sitting in a school event and i felt very strange very anxious so i went to the er and i was really dehydrated they gave me some fluids and i felt better.
i do have a few brown spots on the back of both of my hands and i had some clusters on my feet and a few brown patches on my shaft that looked like liver with a bump in the middle that looked like molloscum but it was dark colored also my vision gets better at around noon but by morning after not eating for 8 hrs it gets really bad .but each day it gets progressivly worse and never comes completely back to normal same with trhe hearing loss it fluctuates .on weekends all i want to do is sleep generally 12 hrs in 2 6 hr blocks i cant get through a full day without a six hr nap.i used to sleep 5 hrs a night for years and wake feeling slow out of the gate but after being awake for a few hrs i became a energy cell .now i have confusion i look at things like if i eat i look at the left overs and ill wlk by them for a half hr before i can figure out how to engage myself to put them away .sometimes i stand there looking at them for twenty mins .it takes me along time to get things done this way.
i just fell asleep in the middle of typing so it took mew a couple of hrs to transmit my thoughts into this message .i have bercome mentally retarded.
my throat is feeling very swollen and dry not sore though.i have lesions all over the roof of my mouth.it feels as though i burnt it with hot food.i am sereiously considering ozone therapy .the only problem is then if it makes me well i wont have an answer and i know that my son has this and he will not recieve help.he has the same things developing on the roof of his mouth such as two dots in the same placement and microblisters on the insides of his lips.diet seems to be my only defense .how well i do during the day depends directly on how well i eat .or else its burning handsand feet like hellfire and damnation breaks loose im my body .my dr keeps saying i dont have syphillis .but i think i would like to have my urethra swabbed just the same if a syphillis titer is too high it will not register as positive.
my dr keeps saying hiv but im not so sure if there arent afew infections .but no one seems to think that coinfections exist in thiis world.and i have so many symptoms .thats why i revert back to syphillis becaquse it can cause symptoms of so many diseases .could it just be that i have so many infections of ebv molluscum hpv and other things as such that my immune system is just overloaded?
i know that i had small amounts of antibodies for hep and syphillis each time i have tested havent checked them in some time though
can the throat be swabbed for syphillis ?i dont know if my pc checked for that .i sweat profusely during the day now it could be 75 and sunny and my back is soakedmy shirt evreything.im just trying to give you as much info along with my thoughts and the drs speculation to get a good idea of what is happening i dont know ifr it will give you any ideas for a hit on something definitly not discounting any of thee info you have given and i will try igenex also i thank you for your time mkh9 you seem to have become a medhelp favorite for many people due to your patience and compassion.
No, they either do blood for both FTA and RPR or VDRL and they can do a direct test on the Chancre if there is on on the penile area. So if your FTA is negative and RPR or VDRL are negative you are negative because the FTA will be positive even if you were very high.
When you say you have small amounts of Syphilis in the blood what do you mean? It is still in normal range or what do the results say?
Are you taking Vitamin B6? If it is too high you can get nerve damage. If not then you say you are not diabetic.
Some of the blisters in the mouth may just be canker sores. These can be very common. They come and go and can be very painful. I have had them too.
You haven't had a rash on the hands and feet right? Like brown spots?
The burning on the hands and feet sound like nerve pain.
Thanks for the compliment. I dont' know about being a favorite. I took on the responsibility of being the community leader for this site so I answer the questions on here. But I thank you for your compliments you are very kind.
i dont take b6.the antibodies for syphillis were .02 then .03 then stayed at .03 and my hep antibodies were the same almost.my dr let the chancre dissapear .so now it would be too late probbaly?can the urethra be swabbed for syphillis?or just for gonorhea and chlamydia?i have thousands of tiny clear blisters on my lips only .have never been painful .and little patches of what feels like burnt skin on the roof of my mouth
my son also has the clear blisters now .i have a few brown spots on the back of each hand not on the palms. they turn whitish if i scratch them.
funny thing is alot of coincednce have occured with freinds and family members who have come into contact with me my aunt had a seizure wich prompted her to go see her dr and they found that she had gerd like me and a dry cough like me and they did an mri with contrast and she had white spots on her brain .so they told her that even though they found something that its probably normal and that she juts reallly never had a seizure.it makes senser find more evidence then convince the patient it never happend.oh and she is alsop dehydrated all the time now she has to drink lots of water to feel half way decent .
i am going to try ozone therapy the drs srent helping me with traditional medicine its getting to the point i wont be able thear or see soon and the drs dont tell each other their true findings they only offer each other opinions on their true findings so it takes longer becuase they wait for severe damage to occur instead of reporting minimal damage .to me its the same thing as lying if there was 3 db hearing loss then it should be reported as just that not that reassuredthe patient that his hearing was normal.how does your pcp know what to watch when he is getting half truths?
what do you suppose all the brown spots on my back meanfrom my shoulder blades to my neck they look like freckles?folliculitis is sticking around as well .how would i go about getting my blood sample sent to igenex is that something i can get my pcp to do?
sorry for allthe different messages but thats the way my thoughts come now .in stages sometimes it takes much longer .but i figure if i give you every piece of info it might be helpful.thanks for your help mk.
very interesting morning i went to reach for my whey protien on top of the refridgerator and found my self face down on the floor my arms were still straight up like i was reaching for the whey not really sure what happend.
Ok, one message at a time. So the B6 I was just worried that if you take too much it can cause nerve damage so that is good.
No the brown spots don't sound like syphilis. But no if the chancre is gone you can't swab it. If you had one you should get the FTA done. It will always be positive if you were exposed. Then if positive you can repeat the VDRL or RPR. If negative you could ask the doctor to have them dilute it to start with if you think it is too high. The doctor can put a note in to have them do that . When I used to run those specimens we would get that kind of note sometimes.. The painful clear blisters sound like herpes type 1 oral. It is very common. It is also common for kids to have it. So, you both can use acyclovir cream or you can take pills and him the cream about 6 times a day. The room of the mouth. Does it look like it is burned or feel different or maybe your burned it. Or does it just feel like a hot mouth or burning sensation? Hot mouth or burning sensation can be from high blood pressure,
see this link.
I'll reply to the other messages as I get to them.
The brown spots may just be seborrheic keratosis or seborrhea.
As for the blood test at IgeneX, He will just have to tell the lab to send them there not to the usual lab or they can send them directly from the office to IgeneX. I'm sure which way they would do it. There are instructions on their website on how to send the samples to them.
The folliculitis may be a combination of dermatitis and bacterial infection. I just had it and had both. I had to but erythromcyin for a while then steroid ointment once a day for a few days then erythromycin for few days it came back and I repeated it and it finally went away.
I think you need to get an EEG and or MRI to check your brain waves for seizure and cause of what happened this morning. You should see your doctor tomorrow. Or go to the ER whichever you can. That is not good. You must have either had a seizure or blood pressure problem or brain problem. That coupled with the hearing and sight makes me worry about something on the brain.
imy dr dosent seem to carehe seems to think it is inflMMtion so he did a c reabtive protien sorry i cant make out the keys to well anymore.my i was 844 at 29.4% so 19% puts me around 500 for cd4s we will see if the dowmward trend continuesif i hit 300 .that might indicate something .but i stillneed to get him to thinkabout an mri with contrast .i think it would reveal quite a bit.
I think you should go to the ER then. Tell them you woke up on the floor. They can check you for seizure and do and MRI or CT. Or, see a neurologist. You really need to. This is not good. Will you go? Only if the neurologist will see you right away.
i am puzzled i have actually brought my cd 4s up to 1144my ratio actually came up a litl=tle also i have this pressure in my temples and my left temple has a 4 inch by 2 inch buble on it why cant they take some fluid from it and test it for bacteria .i t looks really weird because my hair has a radius wher it drops of.where can i go to get antibiotics on my own if i pay out of pocket?ozone therapy is helping it is the only hope i have right now but my vision is still going
I still think you need to get a MRI and EEG to check for seizure and to see if anything is wrong in the brain. You shouldn't have passed out the way you did and there might be a connection to why your vision is going. What kind of bubble is this. Does it seem like a blister where you can see through it? Is it superficial or inside the skull? You really need to get tested.
how do i get them to test me ?i tried once they did a cat scan .the neurologist gets ****** with me.my friend who is going through this had an mri with contrast and they found spots on his brain and they said it was unusual for someone his age but it was ok that they were there.my aunt passed out and her neurologist said the same thing they saw spots on her brain but its ok that it wasnt a siezure.do they ever try to help anyone?i used to think that thats what they were for.
the buble on the side of my head is fluid filled and i have some on my forehead wich are .smaller and one is starting in the middle of my forehead.the pressure in my head is located underneath the fluid on my temples today it is really painful i left work early ive lost alot of strength im having a hard time completing tasks wich were simple to me before.
Hi, so it doesn't matter what someone else's results look like you should still try to get one done to rule out tumor since you can't see and other problems that that person didn't have. Also, a seizure can be seen by the brain waves on the EEG.
The fluid filled areas that are painful sound like they could be an infection. You should see if a doctor will aspirate and culture them. If they are negative for culture it may be another reason for MRI. But those sound separate. I wish i was there so I could take you in myself.
i wish you were too because i dont know what to do anymore it is difficult to deal with discouraging drs.i dont know what to say to them to get them to help me.i dont feel that i gety much in the way of concern and i get so tired that i just dont have the fight left in me sometimes.what type of dr would i talk to about aspirating the patches would that be a dermatologist?what type how do i get adr to give me an mri or eeg i dont know what an eeg is but how do i get it when my pcp wont even let me say the words to even ask for one and he pushes me out of the office.these drs are hammering on my self esteem making me feel very low.eventually im going to need a therapist just to deal with the torment they are putting me through.
so far ozone is the only relief i have gotten but my vision is continuing to worsen it is helping with whatever is in my throat though.but if i end up completly blind then all i have fought for will be lost .i would like to try penecillin but i dont know where or how to get it.when i took doxy for 4 days it caused burning through out my body so i consider that herxing .nobody pays attention to all the peices of the puzzle.or trys to eplain things i get excuses like the micro blisters on the lips could be from eating alot of potatoe chips we normally dont even have them in our house only on rare occasion.wouldnt that be great if potatoe chips were causing everyones illness.
Hi, Well, I still think you should get the MRI or CT scan done and EEG. After that I forget if you have been tested for Lyme? Since you mention herxing? The lab Igenex is the best place to get tested if you are chronic. Have you been on any medication. My friend went blind due a medication called plaquinil. I'm sure there are other meds that can do the same thing. But I wish you would get the scans first since you had the seizure or some time of neurologist episode. Have you had any blood tests lately? If so what have the results been? I wish I could help.
i did have some blood work i had a cd 4 cd 8 ratio and my cd 4s were 1144 and my cd 8s were 866 ratio of 1:45 that is up from 844 and 656 and a ratio of 1:29 to how do i get an mri my neurologist wont help mewhat type of dr do i go to to get aspirated .question is why are my cd8s working so hard?
my platlets seem to be continuously on the low side these days 186 i find it interesting that my cd4s and cd 8s seam to be working on something and my ratio is below 1:50 optimally to my understanding 2:00 is what it would be
I read the CD4 to CD8 count can be normal at 1.5-2.0 so yours is close.When it is less than 1 is when they seem to worry about it. It sounds like you need another neurologist if they won't help. Also, for getting the bumps aspirated I would see an infectious disease specialist or or family practice. The thing is it depends on what is causing these. If the doctor doesn't think they are infectious and maybe that they are a cyst they may not aspirate them. So you can have the family practice doctor take a look and refer you or go straight to the infectious disease doctor depending on your insurance. Make sure you tell which ever new doctor you see about the passing out episode and also your vision problem there may be a connection they see.
i have another friend here on medhelp that has my symptoms and he just tested positive for hhv 6 and he has ebv already .we diagnosed this drs do not help they just write you off .we have to test on our own to figure these things out it saves the insurance companies money but meanwhile we suffer . i am going to try hhv6 testing as well .pretty funny they dont even look at hhv6 they just say no it couldnt be that.when in fact it was .
why does it take 2 construction workers to do the job of 20 drs?i have ebv also when hhv6 and epstien barr are together they can raise heck and hhv 6 gets in the nerves wich could be a cause of burning hands and feet as you suggested earlier
Hi, well that is funny about the two construction workers question. It is true. You could test for HHV6 there is a type A and B you are probably talking about type A. If you are worried about MS you can see that on a CT scan or MRI as well. So back to getting that done. It would cover more than one problem. Didn't the neurologist test you for neurological disorders with a physical?
I don't know but worth giving it a try. I hope you don't have it.
they did a ct scan i think so at that time i dont think they were concrned but that was before i passed out.i will try to get my pc to send me to another 2see if i can get an mri with contrast.i will keep you posted im really fighting hard to get them to look at me.i know i must sound like a buttkiss and alot of people give you meaningless thanx .so i just want to sincerely say thank you mkh9 .you definitly take a much different approach than some of the others who answer questions here on medhelp.you are much more compassionate .just that alone was helpful in soothing some of the anxiety because when you are going through this and it feels like no one is listening you were there.i dont know howmany ways i can thank you.
but let me try
so far no luck for me but my friend has found hhv6 and lyme disease so far his drs swore nothing at all was wrong.he hasa p66 p41 and p58 now the dr wasnt concrned in the beginning when he found p66 and p41then he made them check again and found p58 .
Hi, So are your HHV negative? Did you test for lyme too? It is good that you are negative for these things. I still think you need the MRI of the brain done and EEG. Maybe it is neurological. I think some of your symptoms are. You need a doctor that will listen to you.
i tested for hhv 6 past infection still awaiting results i thought past infection would be the thing since its been over a year .my dr isnt helping so its costing me alot .i hope i made the right choice costing me alot.i am wasting still i have a hard time hearing i cnt comprehend things that people say to me sometimes .im supposed to go to a derm who specializes in stds .to get the fluid patches aspirated.i was told by 15 nurses that drs in ct treat health care as nothing more than income and i have had them suggest that i try new york or new jersey where they are more apt to investigate .i am not currently employed nowdue to the fact that my supervisor is abusive .i was tired of him calling me an f-ing retard and various other belittling comments.i was the hardest worker in the company for 15 years.you get sick and he dosent have the patience for you to get healthy again .even though i was still working and producing.my supervisor madew me miss my appointment to the derm so now i have to wait another month.i found an llmd near me so i am going to try him when he gets back from vacation next week.i am ready to switch drs i am going to take the nurses advice and go to ny .i am going to lose my home if i am too screwed up to work.
my lymphnodes hurt so bad it feels like im being stabbed in the chest .im getting severe itching on my left foot from something my hands and feet are burning worse now i stopped doing ozone.i had to get glasses to read now.i dont have much of a quality of life .i cant really function to do certain things anymore.my son takes naps nownd gos to bed at eight he cant seem to stay awake.i need to record him when he speaks so people will take it seriously.he searches for words and when i dont understamd he gets frustrated and gives up .so i have to tell him to explain it to me and let him know that i am interested in what he is saying.he thinks i am not listening but i cant figure it out and he cant find the words anymore so it is very challenging to have a conversation.
Since your lymphnodes hurt it sounds either like an infection or other immune problem. But that is why you need the MRI of brain to make sure there is no cancer there and also EEG. But, have you had a complete blood count lately? The MRI can also look for parasites in the brain. I'm sorry about your son. How does his lab work look?
i am positive for hhv6 3.43 did you know that hhv c kills cd4s like hiv.i have the gerd oropharyngitis monoanemia fibromyalgia rashirritability dizziness lack of concentraion peripheral nueropathy.every symptom on the list hhv6 in adults can be very severe and it was my head wis about to explode.it burns like someone put battery acid in my veins.it makes very good sense that he is suffering from it asa well since it could be from contact with saliva and it coulkd be contracteds easily.i told his drs i saw the purple dots on the roof of his mouth he has cfs .and mono like symptoms he needs to see a nuerologist too.thats why his lymphocytes are low.i still need to check for lyme again though i think .but now i have a little ammo i can fire back.thank you
no I didn't know you had tested positive for HH6. Do you know what kind? The HH6 -a is the neurotoxic type that can cause MS. I wonder if you should get typed? The diet that I am on has lowered the symptoms of MS. I don't know if it is possible but it supposed is because it is an anti-inflammatory diet. It a non-fat vegan diet. I can give you the link if you are interested in seeing the success stories and the diet. I don't know if it can reverse damage or not. But you can probably talk to the people on there. There is an MS site here too. I am not saying you have MS since you were not types and not diagnosed with MS. Again an MRI would help with the diagnosis.
Yes you should get your PCR or multi-plex PCR done at at lab called Igenex. You would have to have your labs sent there but they check for strains that other labs don't so they miss a lot. I have a friend on here that has chronic lyme. She is being re-treated with antibiotics and the now pulse in certain antibiotics to kill off the dormant lyme that hides out.
i dont know wich kind it is my dr dosent seem to think thati have anything going on he says there is nothing to find but my body is destroyed and i lost my job i cant lift 100 lbs now so i dont know how i am going to work .i guess i need to find another dr who will help me figure the wasting out im getting so weak..i sweat profusely when im outside in the sun i dont know where to go or what to do i got him to order me an mri with contrast.he also prescribed me lyrica i dont know what the heck thats going to do but ill try it anyway.he said that no one is going to aspirate the bumps for me .i told him that a friend strongly suggested an mri with contrast he wanted me to have that friend call him i told him to get lost.
he says that you are born with ms and herpes just brings it out if you have it.does that sound accurate because i know he bs"s me just to shut me up i cant stand liars.im running out of ideas but my neck sure hurts ozone was the only help ive had so far .are there cases of ms that go undetected by mri what about ra .wich way is more likely to detect it a blood trest or mri.
im sorry about your friend with lyme you might want to tell her about ozone it reallyy helps lyme .ive spoken to one person that had lyme and claims to be seronegative for lyme now no trace in her blood and another that couldnt get it under control for years with abx but using ozone only has been symptom free for 12 years.
My neurologist said that MRI could detect it. I was told I could possibly have MS and I had already had an MRI of my back and she said since it was negative I don't have MS and I would have worse symptoms than my back pain.
MS is NOT hereditary but having a first degree relative such as a parent or sibling ,with it, makes you more at risk. However, some genetic factors (having some gene markers (not hereditary markers) can make you more at risk.
From the national MS Society:
Magnetic Resonance Imaging
"Diagnostic tool that currently offers the most sensitive non-invasive way of imaging the brain, spinal cord or other areas of the body."
There is no single way to tell if you have MS but this is one way to start.
Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. However, approximately 5 percent of people with clinically-definite MS do not initially show lesions on MRI at the time of diagnosis. If repeat MRIs continue to show no lesions, the diagnosis of MS should be questioned.
There are other tests if this is positive. One is Evoked potential and another is checking the spinal fluid for certain things. Here is the link to diagnose MS.
ozone kills all viruses all bacteria and all funguses.when there is no answer ozone will help .one of the receptionists his name is neil had lymphoma for 5 years it gave him problems .with traditional medicine it was a battle to survive he did ozone and he has been in remission for 15 years.those are the people that sometimes are lucky enough to seek out ozone therapy the people who cant get it under control .ozone removes metal toxins plaque from arteries lowers choilesterol blood sugar ,it will help ms because the viruses make it worse it disables viruses in the body .i wathced a video where a man seroconverted negative for epstien barr. im not going to lie to you it is costly and just like any antibiotic you have to do it dailybecause obviously you dont want to let viruses or bacteria have time to regenerate .so it is said if you want to try and remove things from the body you want to do 3 shots a day for about 2 weeks and after that for maintanace 3 times a week .alot of people say that autohemotherapy is the best but that was until the dr i was seeing inveted direct intravenous therapy so it is debatable wich one is best.there is a new therapy they are going to start using .hyperbaric ozone therapy it is expensive but it is like getting 12 ozone shots at once making the liklihood of removing things from the body even greater i havent heard any feedback on it yet .but i have done the direct intravenous and i would walk 5 to ten miles in the city afterwards because i felt so good .but it lasts for 2 to 3 days that is why i want to get my own machine so i can do it myself.the machine is the big hit but aftyer that you can do it for 20 dollars worth of oxygen a month im told
when they do an mri of the head will they see the brain or the nerves in my neck im having neck pain ,also the hhv6 says it causes facial edema and my face has those blister looking spots also my temple on the left side its like i have every single symptom of hhv6 and it has been severe
Well, thanks for the info. Let me know how the MRI goes. I don't for sure but I am on a fat free vegan diet and Dr. McDougall has a website that you can look at where they have had people with MS and other problems go into remission on this diet. It certainly has helped me with my cholesterol and my husbands bp. I know it cures type II diabetes. It can also get rid of a lot of problems because it is anti-inflammatory. It is a pretty strict diet but we have managed to change our lives to mostly be on this. But we are not trying to cure a disease. If we were we would be even more strict. I don't know if you are interesting in talking to some of the ones that have been cured. But you can go on their discussion board and talk to them. But I would see if you actually have it first. It is just something to think about.
Glad you looked at the site. It has a lot of good healthy recipes. My husband and I have been on this diet for about 2 years now. He had very high blood pressure and cholesterol. He tried diet after diet and couldn't get them down. So we tried a statin drug but he still couldn't get his cholesterol lower than 200. Mine was 200 on the Greek diet (just fish and olive oil and veggies and lean chicken etc. and very health diet). So, I read the China Study and saw the video Forks over Knives and read some more and finally we tried this. With 2 tablespoon of ground flaxseed makes a difference too daily, his cholesterol was 260 now it is 155 and mine is 130. He only takes the statin 3 times a week. He can get off of it if we didn't cheat on the diet. We eat a little too much plant fat like peanut butter etc and we go out to eat and some times eat meat about once a month. But still doing very well considering. His bp was 140/90 now it is 120/70. So that is great. Mine is too low due to my drugs. But, they say on that diet it can reverse atheroschlerosis they have data to prove it and also type II diabetes. It is very healthy but it takes time to get rid of your sugar cravings and caffiene cravings and fatty foods. We started with just lunch and then went from there. LOL.
have you tried taking coconut oil for the cholesterol problem ?it is supposed to be really good at lowering the bad cholesteroland helping out good cholesterol.ozone also helps with cholesterol levels .it also balances out sugar levels in the body.
thamk you for the info on mcdougals when i first glanced at it i thought it said mcdonalds .but i dont see as well as when this whole episode started so i had a good laugh over it i had to do a double take.
have you ever heard of any casesof people getting infections in the throat that dont make it into the blood?
my dr said there is nothing to look for before he said he thought i might have hiv it sure feels bad whatever it is .i get constipation everytime i have a bowel movement nowit comes out in little nuggets .thats another symptom of hiv.maybe im just turning into a rabbit.?im taking lyrica now it helps the sinusitus i thinkit seems the swelling in my head is 25%better when i take it and im not so restless when i use it..
im really looking forward to my mri monday i hope to god they see something .
i really want to get your opinion on coconut oil i take 3 teaspoons a day anything i have to fry i use coconut oil ,for my salads i make good seasons dressing with olive oil and vinegar.im probably in violation of the diet.i havent read it all yet.
well thanks again for mickey d's.im fizzling out
well i wish you and your husband well
Yes I don't think coconut oil is good for you. Coconut milk it okay i think. On that diet we cook with water believe it or not. It is more like steaming your food. I stir fry with it using a good non-stick pan that doesn't have teflon. I got the suggestion from the too as to what pan to use. You use medium heat and add some water to the bottom and stir fry. Anyway that is for that diet.
Hope you get some information on the MRI. There are other tests to confirm MS. But it will be interesting to see if anything comes up.
i cant get the mri because a cat scan was done on my neck and the drs never got the information . ireally dont understand why health care is so unorganized.one hand dosent know what the other hand is doing.so now i have to drive around and pick the stuff up because they just dont do that stuff anymore.i find my new blood work interesting low chloride high anion gap ,also low blood pressure so i am dehydrated .also my blood says that my hdl is high and my ldl is low they said that would happen the dehydration and the cholesterol that is why they treat with the coconut oil because it raises the ldl and lowers the hdl .i hope i said it correctly
lyrica seems to be helping with the pain in my brain it seems related largely to the sinusitis.when i use the sinus rinse with saline it takes so much of the inflammation down and alot of the pain subsides .
some good news is that i found a new job i dont know if i can handle the work anymore .also the main thing is i got my sons dr to test him for hhv6 and ebv .it makes me feel good to know that i have her concern and her interest in my sons health she also orderd a cbc and some other things im very concerned with him .that is why im trying so hard .
i kmow you have tried so hard to help me and i appreciate that i hope that .you have my gratitude .
Hi, well, first I didn't answer a question you asked before. Yes you can have a throat infection without it being in the blood. It can be bacterial or viral. A lot of times it is viral. It depends on your symptoms. If it is bacterial, you usually have a high fever, pus in the throat and it is the only symptom you have (no sneezing, post nasal drip, no cough etc.).
Sorry you couldn't get an MRI, I hope the CT can tell something. But it isn't of the brain. So I don't know what it will tell.
high Anion gap is usually a sign of acidosis. It depends on how high it is. If very high it can be serious if only slightly high then slight imbalance. It can mean a kidney problem or diabetes. Also can mean taking too much aspirin, lactic acidosis, or accidentally injesting methanol. Also, sulfates and if you take statin drugs it can show up like this when you get rhabdomyolysis (muscle breakdown from the drug).
Glad the lyrica helps. It may be a sign you have some kind of neurological problem since the drug works on the nerves.
High HDL and low LDL is good. I have that too. So that is okay. The HDL is the good cholesterol and LDL is the bad cholesterol. So that is not the problem.
They should check your hemoglobin A1C (fasting) and see if you are diabetic. Unless, you already know if you are or not and check your kidney function. II don't knjow how high your anion gap is. So I don't know if it is really acidosis. My anion gap is low (opposite of you). Strange.
im still wondering why my cd4 count is good and my cd8 count is almost as high and my ratio is under 1 and 1/2 to 1 im saying that whatever is in my throat is causing the neurological symptoms and we are having a hard time finding anything because it is in my throat it may be down to deep for a swab . am i best off going to have my throat swabbed first thing in the morning ? before i have eaten or drank anything or brushed my teeth ? this is destroying my body the nerve damage could be a cause for m.y wasting . could this be a feasible theory. i look like im almost in the end stages of cancer now.
without lyrica the pain is so bad even with it it is not much better. my latest lyme test showed .22 for burgdorferi.i know its not positive by why did it move at all?i dont know what to think i can barely lift 100 lbs now.
Yes getting your throat swabbed first thing in the morning is best. But, I don't know if what is causing your throat problem has to do with the rest of your problems. Maybe the CT scan results will show that. There is no reason to think you have cancer. Not at this point. It could be other neurological things. The ELISA test for lyme isn't that accurate. It is best to send it to Igenex because they check for strains that aren't in the ELISA and can do a PCR test. The 0.22 can just be the normal baseline reading so it doesn't mean you are low positive. I think being able to lift 100 pounds is a lot. So that is actually good. Hope you get some answers soon.
i used to bench press 350 and squat 485. i worked construction all of my life we have to lift pipes tha weigh 400 lbs and run a 100 lb jackhammer .i used to do it with ease now i look like a 12 year old boy my arms have gone from 17 " to 12 " same with my calves i used to be able to rake 100 tons of asphault in a day.asphault is around 400 degrees when it goes into the truck i cant gou outside if its over75 i sweat profusely if i tred to rake asphault now i would melt.i think i will get my answer soon but .my thing is if i didnt have a coinfection i probably wouldnt be wasting.i guess im going to have to wait another year but im afraid my vision will be gone by then .ive had to get glasses now and it seems the prescription is starting to become blurry already only 2 weeks.the ct scan was in january i dont know im not sure if the neuro ever looked at it or not i think i remember my pcp saying it never turn anything up. i have the disc i just dont know what to look for on it.
Wow that is a lot of weight. You were very strong. I wonder could you have pinched a nerve in the neck or back or something. I don't know if that would do anything to the vision. Just throwing things out. Also, you don't have any fevers now do you?
That is pretty low grade fever. I wouldn't worry about that. 99 can be very normal. They don't really call it a fever until it is 100.5 . But if you had strep you usually get a high fever and usually have pus in the throat. Hope you don't get that.
i got my sons results back and his dr called and said everything was negative but i got a copy of the results and he is positive for hhv6 it has gone past infection now but i know for sure that it happened 11 months ago i told these igiots that i saw the signs as they happened the rashes were i dentical the markers in the blood every single thing except my blood is still doing things im not sure about his anion gapand such the cbc didnt cover that.
when you have a nervous parent you dont mess with this crap whay are they trying to torment me to death .. at least now can understand why his personality has changed and the tiredness . he does not have epstien barr .i stopped kissing him goodnight and hugging him he got it so easily after 3 months i hugged him wierd because he got a chancre . and so did my buddy 2 days after we went biking together .
my dr never sebt ny swabs for my throat to a lab he was just checking for strep each time and not telling me.so i went to an urgentcare and they sent a swab out to the lab hopefully figure something out .i will let you know if i get something.
i like the mcdougal diets but unfortunatley i will not be anle to sustain life on the e rice meals or just vegetablesi have to eat every half hour on that giet .i can do the vegetables with pasta but i still have to take whey protein or i literally starve.i swear to you between the weight gainer and the food that i eat i am eating about 6000-9000 calories and wasting still and i still take a boatload of vitamins .
i eat broccoli cauliflower carrots ,garlic ,onions,rice , beans ,white buton mushrooms ,and cucumbersbell peppers ,tomatoes .if i miss brekfeast and lunch my muscles start twitching again .i need to eat every2 hrs . if i neglect my diet in any way it causes a whole series of symptoms to come back .in the mornings i am almost completly blind i have to take aminos before bed and eat something to get a few hrs of sleep or i wake up.if i am tired and i want to sleep in i cant i have to get up and eat something or my vision will be so blurry i will have to feel my way around the house.
I wonder if you are missing some nutrient. I take 20 grams of aminos a day but it is plant based aminos and I feel great. I put the protein powder in vanilla soy milk. The protein powder I get at Costco but you can buy it at GMC vitamin store and other places. It is called Vega Protein and greens. It is only about 150 calories and balanced aminos. I am generally not hungry on this diet. You can eat as many meals as you want but you eat things like yams as snacks, and you have to have lots of greens with legumes, beans, quinoa etc. He has a week or two workshop where you go there and he shows you how to do the diet but it is expensive and I don't think insurance will cover it. But not sure. I doubt it. I also got the video forks over knives it is the same thing and a book called Keep it Simple Keep it Whole by Dr. Lederman. and Pulde. It is a small about how to transition. But we are still trying to get the hang of it. You have to eat all whole grains not white rice (whole grain rice) and whole grain pasta. Also, no oil, you cook with water, You eat about half starch and half greens with beans and other legumes for extra protein. Any time you get hungry you can eat any of the whole plant based foods like a sweet potato, or potato, or lots of things. But we have too much fat in our diet because we cheat and have too many nuts, avacado, and other fat which results in about 30% of our calories. So we can't lose weight. But that would be good for you. Just a thought. Nuts are good protein and healthy, not the salty type just plain nuts like walnuts or pecans etc. and avacado is a good plant oil.
I am sorry to hear your son has HHV6 too. That is bad news. He has similar symptoms as well? You need to talk to an infectious disease doctor about the affect of these viruses on you and maybe get referred to someone.
I wish I could be more helpful. You should get the results of the CT scan and see if there is anything there from that doctor.
hello mkh8 how have you been ? i figured id give you a break .i tried to get the mri but they wont help me insurance denied it .my muscle is completly gone now i couldnt go to my cousins weddinng because i am half the size i used to be and my suits dont fit anymore .i eat like a but still getting smaller.i told you before that my ratio was very low so my dr says i have become immunocompromised but sees no reason to investigate further.it might be helpful to get the mri to determine wether or not i have ms .according to the hhv6 foundation hhv6 is linked to ms it travels through the olefactor nerve and when reactivated it can get into the brain and cause inflammation .wich i have .
it can also cause inflammation of the tympanic membrane .wich would explain the popping in my ears and some of the hearing loss that comes and goes.it also can cause optic neuritis but that is usually in immunocompromised patients .it also can cause inflammation of the temporal lobes mine are causing my temples to feel numb.you would think that knowing all of this that my dr would fight harder to get me an mri.
hhv6 in patients with ebv can reactivate more frequently .my dr told me at my last visit that he wanted me to have the flu shot but not to get a shingles vaccination since im immunocompromised and it is a live vaccine.
then he said whatever it is it dosent want to show itself right now so come back in three months.then he said he knows alot of people that live with hiv .but if i need to see him sooner for something else or if i test positive for hiv or something else come in sooner.that was pretty much where he left it
i dont know what to do .i know you have tried hard to help .i thank you for your support.
Sorry you are going through all this. Does the doctor think you have MS? If so he should be able to get the insurance to pay for the testing. Stupid insurance. What if you saw a neurologist what that help? It is awful.
I hope you can get diagnosed soon.
i asked him if he would notice ms from my blood work he says yes but he lies to me occasionally.so i dont know if that is true.i told him that hhv6 is linked to ms he told me to stop reading and live my life to the fullest just in case i dont make it.
There is no single definitive test for diagnosing multiple sclerosis (MS). Instead, your doctor will perform a neurological examination and take your complete medical history. They'll also perform diagnostic tests like MRI, evoked potentials, spinal fluid analysis, and a series of blood tests This is from healthline.
At this time, there are no symptoms, physical findings or laboratory tests that can — by themselves — determine if a person has MS. The doctor uses several strategies to determine if a person meets the MS diagnostic criteria. In order to make a diagnosis of MS, the physician must:
Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND
Find evidence that the damage occurred at two different points in time AND
Rule out all other possible diagnoses.
In 2001, the International Panel on the Diagnosis of Multiple Sclerosis updated the criteria to include specific guidelines for using magnetic resonance imaging (MRI), cerebrospinal fluid (CSF) analysis, and visual evoked potentials (EP) to speed the diagnostic process. These tests can be used to look for a second area of damage in a person who has experienced only one relapse (also called an attack or exacerbation) of MS-like symptoms — referred to as a clinically-isolated syndrome (CIS). A person with CIS may or may not go on to develop MS. The criteria (now referred to as The Revised McDonald Criteria) were further revised in 2005 and again in 2010 to make the process even easier and more efficient. This is from the national MS society here is the link it came from:
These are some symptoms (it is weakness on one side usually not both). Same with the vision is usually in one eye not both.
Blurred or double vision
Clumsiness or coordination problems
Loss of balance
Numbness and tingling
Weakness in an arm or leg
Look for the most common symptoms of MS. These symptoms include:
Feelings pins and needles, but also numbness, itching, burning, or stabbing throughout the body. These symptoms present in about half of patients with MS.
Bowel and bladder problems. These include constipation, frequent urination, suddenly urgent urination, problems emptying the bladder fully, and the need to urinate at night.
Muscle weakness or spasms, resulting in difficulty walking. Other potential symptoms can exacerbate this symptom.
Dizziness or lightheadedness. While outright vertigo is uncommon, feelings of dizziness and lightheadedness are common.
Fatigue. About 80% of MS patients feel chronic fatigue. Even after a good night's sleep, many MS sufferers say that they feel tired and drained. Fatigue associated with MS is usually independent of the amount of physical work or exercise that you do.
Sexual problems, including vaginal dryness in women and difficulty achieving erection in men. Sexual problems can extend to lower responsiveness to touch, lower sex drive, and difficulty achieving orgasm.
Speech problems. These include long gaps between a string of words, slurred speech, or intensely nasal speech.
Thinking problems. Difficulty concentrating, difficulty retrieving memory, and low attention span are all common.
Shaking or tremors, making it difficult to do some everyday activities.
Eye problems, usually affecting only one eye. Examples include dark spot(s) in the center of the eye, blurred or grey vision, pain, or temporary loss of vision.
So if your weakness is on both sides of the body and the vision is both eyes it may be something else. I wonder about a brain tumor or chemical imbalance , some inflammatory disease such as an autoimmune disease or other infection perhaps infection of the brain or nerves? It would have to be something that infects the eyes as well. Do you ever eat raw pork? Travel to another country than the U.S.? Swim in fresh water like a pond or spring?
i have difficulty walking my muscles are weak and fatigue easily.my balance is affected drastically i have a hard time riding a bicycle anymore .i fall down alot.my right hand is at the point now where it is staying numb towards the pinky and im losing feeling .my right eye is useless now without glasses.my lymph nodes in my throat are swollen.my gi says i should have an mri but it dosent do me much good because he cant order it for me.i told him i found hhv6 he says it dosent add upp there has to be something else another virus and he thinks i should have an mri to see what kind of damage has been done and to try to identify the problem to stop any further damage.my stomach makes strange noises constantly.im turning into a retard .i can feel the nerves in my neck ther swelling in my temples .my right foot is starting to lose feelingmy right ear is lossing more hearing rthan the left.im not correcting any spelling this time because i want you to see how i type now .this is how my brain works now.
i cant tell when im typing only after i rtead it is when i can tell my mistakes.im seeing an llmd my blood is going to be sent to igenex.this whole process will cost me 1000 dollars or more .he asked if i tried alternative therapiesd i told him abouit ozone .he asked if it helped i said yess quite a bit.he said at least you know you can feel better .but i had told him how much it costs for 3 shots a week wich is the bare minimum its 500-600 a week between tolls parking and gas and food to travel to n.y.c.who does he think has an extra 600 a week sitting around .do all drs live in a fantasy ?
oh and i think i have grey vision things seem like they have a hazy white look to them i think its foggy all the time now.my eyes hurt like a son of a gun.my speech is slightly slurred almost lispy with certain letters.my sons speech is slurred i have great difficxulty understanding him .he gets really pissed off at me because of this .all iwant to do is understand what he is saying but his words sound like something else.he cant pronounce certain letters still at nine years old .l and r sound like w.hes italian not chinese.
im losing the fight in me it is hard to keep dealing with drs when you are met with so much resistance.my sons dr asked me if i was happy with what the drs did for him i said no but i didnt know what to tell her to do because they all pressure you and steer you toward the idea that you sjhould let it go as soon as you walk in the office .but now that his dr knows i have become immunocompromised she seems more willing to listen .especially since i diagnosed my son for hhv6 and she dropped the ball and wouldnt test him .i had to do this all on my own.ultimatly im trying to find me out for my sons sake .because they will not help him if i dont.
I'm so sorry you are going through all this. Why dont 'they treat you for MS if you have HHV6? You seem to have one sided problems? A neurologist should be able to diagnose you. I can't imagine that the insurance won't pay for it. I may be able to get a phone number of at least the California hot line if you can get a letter of rejection from your insurance that says they won't pay for it. The one in California can I think (hope) refer you to one in your area that makes the insurance pay for the MRI. We had to do with my husband's brother when he had cancer they kept denying him treatment. I am going on a short 4 day vacation. If you can get that letter from your insurance in the mean time. Or if you have one. The I'll be back here on Thursday and I will look for the phone number of that place. I'll will have to dig around a bit because it was 2009 when we used them. But I'm sure I can also try to find them on the internet. I will call them and see if they can refer me to your state. I forgot which state you live in?
i thank you for all you have done mkh9 .but im starting to lose hope that anyone will be able to help me i think i will be blind soon my immune system seems to be losing the battle .no one will help me and i dont have the strength to fight anymore .i dont think i will be able to help my son if i cant see to drive to work .my clothes dont fit anymore .i dont like to go to family gatherings anymore because i look frail.the night sweats come back for periods of time then disappear off and on .my right hand is permanently numb.i just watched a friend at work get 3 blood transfusions they said in 4 more hrs he would have been dead .he has been in and out of the hospital for 2 years .he has had things like jaundice .they keep telling him there is nothing wrong .he is anemic obviously he has contracted a virus but they cant identify it.
I"m sorry you are going through all this. Maybe they can just treat you for MS even if they haven't diagnosed you. See if it works? I don't know if you have that even though you have tested for HHV6 but maybe it is worth trying. I don't know.
Oh, now he is diagnosing you with Lymes without testing? Or did you come up positive for that? My friend has lyme. It is possible. She is not on antibiotics she uses herbal treatments. A variety of things. If you come up positive for that I'll give your name. She is on here. It is best if you treat with doxy for two months then just do occasional spikes of antibiotics. If you have lyme you probably have the co-infections that go with it. Erhlichia, Babesia and Bartonella. The best lab to get tested is Igenex and get yourself an LLMD doctor. But you would have to pay for it and they are expensive. So I don't know if you can do that. If this doctor is willing to test you then you can do the usual lyme test at least and the co-infections. It would explain alot. She has similar symptoms except for no vision problems. You doctor sounds like a downer or an alarmist.
i dont know i i have lyme my blood is at igenex now as we speak but the neuro was being fecicious when he said those things meaning that the llmd would say i had it regardless.its costing me a thousand dollars by the time i get my results and any type of diagnosis.
Hi, if you have been rejected by your health care by a letter you can call the number below in your state and they can help get you the tests you need. So, if your doctor is refusing to let you have a test you may also call them and ask how you can get them to get you an MRI. Tell them you have progressively loss your hearing sight, and strenght weight loss etc. and they refuse to do testing. But you can ask you doctor to put it in writing they he refuses or will not do an MRI. He can state his reasons. it doesn't matter why. These people have fought for us in our state. If you have a PPO instead of an HMO you can ask for the HMO phone number. I'm not sure if this number is for both. Is is a free line and they are very helpful.
Hi, Yes it is the Office of the Heath Care Advocate.
It doesn't matter what your doctor thinks they can force him to get you an MRI or anything you need to get diagnosed and treatment. We had to do this every step of the way for my brother in law when he had brain cancer. The doctor refused to do anything so we called them but they said the insurance has to refuse whatever you want done. So If the doctor refuses, then you can ask them what to do about that. That you have steadily declined and can't even see and that now you need hearing aids, lost weight and they won't let you get a diagnoses of MS or anything so that you can get the right treatment. Or tell your doctor you want a letter of refusal for the MRI etc. If you get that you can mail it to them. But first give them a call and if You have an HMO and they are a PPO ask them for the other number and/or website. I'm sure they will be very helpful. They are really great. You can do this.
im not having very good luck with the advocate she said they cannot force the dr to order testing.i dont understamd why they are trying to convince everybody that there is nothing wrong with them .they go to great lengths .bold face lies repeatedly .snyde comments .some of the drs are angered to the point they are almost yelling just because you tell them the truth that you are going to an llmd .why do they want you to keep whatever you have ?they could actually help if they would just look.what kind of person lets another human being suffer like this when they might not have too.
im missing appointments now because i cant remeber things or keep them straight in my mind anymore.my face gets infected everytime i let my facial hair grow .40% hearing loss on certain high frequencies .probably about as much vision loss .i just find it interesting that i have brown patches on certain parts and vision loss and hearing loss muscle loss ,a rash all over my head and face burning hands and feetrash on chest and back brown spots on backs of hands and on arms.fluid patches on head .how much more evidence do they need for a spinal .or an mri .i think i may have already had something 15 years ago there was something and my body controlled it and this dr pulled the same thing pushed me out of the office and told me it was just molloscum but now there are brown patches in the same exact spot and the bump came back and went away again it seems very syphillis like. 3rd stage is probably the only thing that would present symptoms for this long.if my immune system is too weak would it make antibodies?one thing seems sure there is no way i will have hearing possibly vision in another year .my hearing loss is starting to increase at a more rapid pace.i can feel the pain from my ears to my throat and from my eyes to my throat it travels from my throat through the back of my jaw and up to my temples through the nerves behind my eyes. with that much info they still cant add things up i am very descriptive to try to help them to help me but they just disregard everything.the rash is very bad on the temples where the pain is greatest indicating to me that thats were the greatest concentraion of infection would be that is also where the fluid filled patches are .im going to try the advocate again to see if they will help .im filing a greivance against the id who would not help me.this all started with contact from another human being and i have every confidence that hey will diagnose it as anything other than an infectious disease.they seem to think they have eradicated syphillis and i wonder if they think they can eradicate hiv in the same manner.its interesting that they swear that these things are nothing to many people .they do not admit that they dont know every form of infection.they have recently acknowledged that lyme disease is sexually transmitted and that lyme is being transmitted with another bacteria and thats why so many people are experiencing chronic symptoms and need extended periods of treatment.so when you get a tick bite you get two diseases in one but do drs tell anyone this im not even sure if they know this yet or if ilads has to teach them still.
You could get retested for Syphilis. There are about 20% false negatives. I think I said this a long time ago. If you want to retest you can check the FTA-antibody or FTA-AB and if that is negative then you are negative. Also, how did your lyme tests come out? Did you ever ever get them back? I would call that number I gave you and they will help you if you get them to deny any test such as the MRI or even lab work.
my sons dr said to get an antibodies test to see if im even making antibodies .but my dr wont help me .even though we gain more and more evidence to support the fact that there are multiple forms of damage to the organs in my body .he still wont help.whatever this is started in my throat .the health advocate only said that she couldnt force the dr to order the testing and ignored the fact that the insurance denied it.she didnt seem like she was very interested in helping but i will try again today.
as far as igenex gos i cant even get the blood too them the fda is stopping courtesy draws so i would have to travel 4 hrs to get the blood drawn everyone around here was strong armed into eliminating courtesy draws.
i had someone draw my blood but igenex found one of the viles was expired so they sent me another kit.so i now i have to try to get my blood drawnagain
i cant do it on a holiday week or the samples will sit for 4 -5days before they are collected
.this could affect the samples
I would see a social worker maybe about this. Can you go to a different doctor? I don't see why you see that doctor when he won't do anything. Maybe a university doctor that works on MS or something like that will help you. You need someone to go with you. I know these people can help you the problem is they need a letter of rejection. So if you can get your doctor to put it in writing that he refuses to do anything for you or something. Or if your insurance refuses to pay for it. So if you could talk him into ordering it and the insurance won't pay they will force them. You should ask the department of health care advocate what to do in your situation. That no one will order any tests to diagnose you in your area. Where can you go?
i have an appointment to my first dr he seems to be much more helpful.the dr im seeing now was part of his practice and he was kicked out or something but the dr i used to see is still affilliated with hartford hospital and has a large office with other partners with various specialties .i should have stayed there but he had made some comments that i couldnt handle at the time because i was very sick and in pain .i think my dr now thinks i have hiv and is checking my blood to see if it is ready to show but with the hearing loss and the feeling in my throat it could very well be syphillis the pain i had in my head for so long .i dont know why i didnt get an mri with contrast being that it could be neurosyphillis .if lyme can be so difficult to detect then why wouldnt its siste