what causes this

[jockojohnson]

any idea what would cause esinophilic folliculitis?

[jockojohnson]

they will not do a swab I have polyps the skin is starting to close of my nostrils.i am getting very tired .I went for a bike ride and a week later im having great difficulty walking my legs just haven't evacuated the lacti9c acid or something .I don't have the power to stand its very difficult when I ride I cannot get unclipped from my pedals I don't have the strength so I fall over onto logs and rocks .I am afraid I will get injured seriously .now the same thing happens to me at home in the kitchen bathroom etc.ia fear one day I will hit my head and meet my demise .  I work outside so the building theory although a very good thought would not apply in this instance.

[mkh9]

I guess you can have the polyps removed if they are causing  a blockage. Sorry you are having all these problems.

[mkh9]

I guess you can have the polyps removed if they are causing  a blockage. Sorry you are having all these problems.

[jockojohnson]

I am treating myself with steam inhalation therapy it is the only way I am able to knock down the infection in my lungs.i don't know what else to do.everyone I work with is complaining of the same things now sore lower back .sinuses are ripping .digestion issues .numb hands and feet .it would be nice if they would at least try to get rid of the sinusitis.

[mkh9]

Hi, Steam is really the best treatment for sinusitis. Just don't burn yourself. You can get antibiotics but best to try to steam it for a while and see if you can break it up.
mkh9

[jockojohnson]

the steam is helping but not fast enough I will be blind soon .my hearing seems to have leveled out for now.    my neighbor finally spoke to me about his symptoms I asked him if I could record the conversation.he was ok with it.after comparing notes he is convinced we have the same thng and that his 9 month old also has it.his daughters head is not forming properly because of this and she will have to wear a helmet to bed so that her head is not deformed.

now I have infected hundreds of people with this and they have also infected hundreds is an epidemic but the drs still deny to all of us that there is a problem.

[jockojohnson]

now I am experiencing severe pain in my chest my son wanted to wrestle the other day so he pushed on my chest and I screamed like a girl due to the pain .it scared him .but it hurts so bad I have a hard time breathing .I cant sneeze r cough for if I do it becomes so painful it brings me to teers .

[jockojohnson]

hello mkh9 just wanted to check in I want people to know how I am managing my symptoms and the symptoms that I have gotten throughout this it may help for others to know these things in case I happen to get a diagnosis.this is what the drs should be doing for us .and they might be able to provide better help to us patients.how are you hope everything is well .

[jockojohnson]

what test would identify the cause of pharyngitis i might be able to have it done .could you tell me how that would be determined?

[mkh9]

Strep pyogenes or other beta hemolytic streptococci or Arcanobacteria sp.  are the usual causes.

[mkh9]

p.s. Arcanobacteria hemolyticum usually can be normal flora but if you have symptoms with fever can be the cause of pharyngitis. They have to do a throat culture for that not a strep test.
mkh9

[jockojohnson]

so there are no other tests for pharyngitis.

[mkh9]

There is a PCR and DNA sequencing test for strep pyogenes Also, a ELISA serology test for it.  Also, there they can check specifically for gonorrhea Via a PCR test usually and Syphilllis chancre in throat but only done the first 10-90 days after infection because it goes away after that and this is done by darkfield. An anaerobic bacteria called Fusobacterium necrophorum can cause peritonsillar abscess, they have to do a culture for this and lab tests. Sometimes Strep pneumoniae and Mycoplasma pneumoniae and Chlamydia pneumoniae can cause sore throat as well. But S. pneumo can be normal throat flora too. S. pneumo is cultured and lab tests are run. Chlamydia and Mycoplasma are run by PCR. Although there is no broad test for pharyngitis.
Some viruses cause it as well.
mkh9

[jockojohnson]

well I finally got a mri of the sinuses.the radiology report says that there is an infection but do you think I got any help from the drs .I cant get the drs to do their jobs .t.hey just refuse .I get little pieces of info but even with thd positive test confirming an infection they just say I cant see any one thing that would cause this .so great its more than one thing tell me what some of them might be so that I can get help .my coworkers are getting progressively worse .having long term constipation and diahrea ,hearing loss ,vision problems,coughing.another friend of my son took this home to his father who my son said is home very sick with a throat infection and an ear infection.

[mkh9]

What does the MRI say? Is it in the upper sinus or in an area where they can do a culture? It is malpractice if they won't do anything if there is clearly a MRI that shows there is an infection and they won't treat it. That being said if it is sinusitis it is often not treated and usually they have you use a humidifier and other treatments to relieve symptoms not antibiotics.
Such as saline nasal irrigation, steroid nasal inhalers (short term), decongestants and OTC pain relievers..

If it is bacterial they can give antibiotics, if allergy then  see an allergist or take antihistamines.

So until they diagnose what is causing the problem such as  a culture (bacterial and fungal). Then you can't fix the problem.

I wonder if your work place has "sick building syndrome?"  Maybe this is the original cause.

I don't know all the answers here.

mkh9

[jockojohnson]

i will try.my son has sensorineural hearing loss just like i do coughing sneezing clearing throat but they wont help him they just want to keep seeing his hearing drop.3 drops and they think its great they dont likje the fact that 4k 6k and 8k are getting worse .my son has been hanging out with a new freind for three weeks now and we went for a ride in my truck this morning he is coughing and sneezing and clearing his throat just like the rest of us now if he develops sensorineural hearing loss in 3 to 6 months your going to tell me its unrelated 30 people all have the same symptoms and the same type of hearing loss but its not related.how many more people would have to get the exact same symptoms and sensorinueral hearing loss for it to be considerd from the same infection                                                                                                          

[jockojohnson]

why is it so hard to determine the cause of pharyngitis.why wont they even check to see what it is.yes i have something viral i told you previously th.at i identified a virus under my microscope and so did dr clark.so that is one aspect of this .i am suggesting that there are coinfections but we need to check for them but i can tell you that when looking at the virus under the microscope you can watch it attack other cells and infect them after a period of trime the regular cell becomes half engulfed then completly engulfed.could bacterial pharyngitis be contagious.because i respond very well to rocephin.would ;lyme respond to rocephin .my gp said .that some viruses respond to antibiotics but not enough to clear them.so he was lying to me again .why is he diverting my attewntion from thge fact that it was completley gone for a week.why if from all we know do we ignore that it must be bacterial pharyngitis.when we could find the right antibiotic regemin to fix part of this and at least i would not have to be completley deaf.

[mkh9]

Usually, pharyngitus is classified at strep throat or a few other bacterial related not viral related agents. Unless you have an electron microscope you can't see a virus with a regular microscope. It won't respond to antibiotics either.  Yes if it is bacterial a simple throat swab would be the way to check for it. But you have to have a fever, sore throat and sometimes pus and/or red throat. If you have other symptoms like a cough/sneezing they or other virus they won't do the culture. That is protocol because that is how strep throat presents itself. Does that help?
mkh9

[mkh9]

Usually, pharyngitus is classified at strep throat or a few other bacterial related not viral related agents. Unless you have an electron microscope you can't see a virus with a regular microscope. It won't respond to antibiotics either.  Yes if it is bacterial a simple throat swab would be the way to check for it. But you have to have a fever, sore throat and sometimes pus and/or red throat. If you have other symptoms like a cough/sneezing they or other virus they won't do the culture. That is protocol because that is how strep throat presents itself. Does that help?
mkh9

[mkh9]

I just read that Dr. Ty Vincent has a study on Chronic Lyme patients and he thinks that the debilitating symptoms they get could be from an autoimmune disease they get from lyme instead of the bacteria causing the destruction itself. He uses low dose immuno therapy to treat it he claims it is effective. I haven't seen the data but it is something to talk to a naturopath about. It may be interesting to you. It may be nothing but it is something new out there.
Take care,
mkh9

[mkh9]

Penicillin won't help Lyme or MRSA, but it will help if you have Syphilis. No antibiotics work on viruses. I think it is a coincidence that they have similar symptoms that you have. I don't think you gave it to them if so it would be viral.

mkh9

[jockojohnson]

it will help lyme or otosyphilis ,mrsa and various other bacterial infections .and some viruses .it will help the sinusitis as well depending upon what it is.this thing is highly contagious . i have had 3 more people come to me with hearing problems and vision problems one of the people i do work for has it he said he cant hear out of his right ear now and sometimes he just cant see at all for the past 2-3 months .3 months ago he came with me to do some work at a two family house he owns the work was inside .now here we are 3 months later and he is clearing his throat sneezing ,coughing ,and has vision loss and hearing loss .just like 15 other people that have been around me .and who knows who else has gotten this from the 15 people that have gotten it from me .i should have been qaurantined.through kids at my sons school there are probably hundreds possibly reaching into the thousands .the guy i do work for said he went to an ent and there is something going around with those symptoms.he is from my town so ent's here are obviously getting reports from other people wich confirms my observations.what will they do about it?so far nothing.

[mkh9]

Good luck. But I always advice not to self treat in case you get an allergy or other problem. Also, that won't help the yeast infection if you have one.
mkh9

[jockojohnson]

im going to try the treatment for syphilis penecillin  3 shots intramuscularly

[jockojohnson]

i am taking monolaurin i discoverd that there is a pill for people who do not like the taste of coconut oil .this has been somewhat helpful.the claim is that eating coconut oil only gives you 3% absorption.taking it in pill form allows for 95%.still not a cure .but its definately helping me to regain energy and mental focus .using coconut oil topically and in the nostrils .this is a part of an expiriment to see if something from my skin is entering my throat and sinuses from the outside in .im down to this the more issues i clear up yhe better i seem to get .coconut oil is the only moisturizer that has ever really helped my skin this much one application and my skin is 70 % better.ive tried every type of cream with steroids and antifungals never really got much in the way of results .

dermatologists perscribed me all kinds of mixes that werent cheap .for 18 dollars i can get a large tub of coconut oil that kills fungi bacteria and viruses on my skin and works better than any moisturizing cream or hair conditioner i have ever tried .i apply it an hour before i shower so i can wash off any excess.to early to say but it seems as though putting it in my nostrils and on my skin around my ears may be helping my sinuses .i may try applying it in the morning to see if prolonged contact provides faster more noticeable changes.one things for sure i will never buy fancy cream again.

but with all that said it will eventually lead me back to the question of what is the virus in my blood that i have seen attacking cells .but i will have to take my answers one at a time for now i guess.

[jockojohnson]

well finally got an ent to admit that i have hearing loss and that it is sensorineural .i am losing my high frequencies50% in right ear left ear at 40%.so finally we do a cat scan of my sinuses.but i do not suspect it will show a viral infection.i think that whatever this is will continue to destroy my nerves and wreak havoc throughout my body.until the point i am completley deaf and blind and eventually cannot walk.these are the things that happend during the acute stage so i suspect later that they will come around later in full force at some point that is the inevitable truth i will continue to fight this illness whatever it may be .i am going to tufts university to see if they can help at all in the hopes that my son can recieve help through my results .if i could i would have him taken care of first but no one cares to help him.until i can tell them what he is infected with .

isnt that their job ?

[mkh9]

Hi, sounds like you got a lot done this time. I would get the CT scan and see what happens. Maybe they will see something. Take if they don't do anything then take all your results to Tufts.
mkh9

[jockojohnson]

i forgot to finish the story about the throat he said wait aminute and listened to my throat then hr took the stethascope away and said its right here .and i was like you can hear that ?i was amazed that a dr could actually identify the exacty location of the infection !after 2 years of me repeatedly telling him.i almost cried with the thought i might recieve help .i knew it was there but it took me 2 years to get him to llisyent 2 years

[jockojohnson]

my dr put me on bacterim and my throat is clearing up but my ears still havent stopped popping my hearing is getting worse .but i feel better during the day.i can actually swallow again wierd thing is my throat never hurt it only felt swollen and very dry and scratchy.jerky dr is the one who is finally trying to help me .he listened to my lungs because the infection is starting to go there but despite difficulty in breathing he heard nothing .

i started talking when he was listening and he yelled at me and asked if i ever heard someone talk into a stethascope i said every day for the past two years thats what i have heard.mostly in my high frequencies wich are now just about gone. now he is talking about staph infection .but no one would even consider it even with confirmed folliculitus.he had me do penecillin for 10 days now we switched to the bacterim.

the sputum test the dr orderd was a sputum with a gram stain with c+s can you tell me what that means?i want a swab of my sinuses and one of my urethra .you cant get them to do it though.if i cant get any real help im going to tufts university.this is way beyond what should have occured 2 years to get started now we are trying pop shots.im going to drive 2 1/2 hrs on a weeknight but what choice do i have i need to be able to hear and see .the bacterim is clearing the bacteria but seems to be aggravating the virus in my blood .

[jockojohnson]

this is frustrating every 6 months i lose another15% of my hearing.and they wont even monitor my son.i know that when i take the penecilin feel like a human again my stomach feels better and my eyes do not hurt.

[jockojohnson]

it just seems to me there has to be some method of detecting things in the throat and the sinuses .is strep the only thing they can find .how is it  when a throat culture for strep is done they can see more than white cells?

[mkh9]

I don't understand your question. The culture for strep is done by a throat swab that is placed on agar media that the bacteria grow on. The white cells are seen on a slide that the swab was smeared on then stained. They then look to see if there are white cells, epithelial cells and what types of bacteria. But a regular throat swab they won't check for anything but strep , unless it is a throat cutlure for everything it depends on how they order it. So then they can find other bacteria such as G.C. (old way of doing it and it is not really done that way any more because it is not accurate) they do molecular, Chlamydia (same as for GC) , arcanobacteria sometimes present, and can cause sore throat, other beta hemolytic strep which can cause sore throat like Beta strep group A (causes the usual strep throat), B, C and G. They can look for Haemophylus influenzae (but it doesn't cause too many problems in adults) , Neiserria meningitidis. That is about it.

A swab of the sinuses would be separate. They can use a Calgi swab and look for B. pertusis or viruses, But usually they use a regular swab and look for Staph. aureus and sometimes pseudomonas sp. Those are the usual culprits. The ear is usually not done they go by symptoms. If they suspect something they can do one but it would have to be done surgically. Otherwise, if you have an ear infection they treat based on the pressure in your ear and pain, fever and symptoms. The best thing is a humidifier, and anti-histamines. then antibiotics if those don't work.
mkh9

[jockojohnson]

why is it drs will not test my throat for anything other than strep .they lie to me and tell me they are checking for gono and chlamydia but when the records come back they say strep test.how would they ever find pharyngeal problems if they are not willing to look.?they somehow manage to avoid any test that will tel me what is in my throat.my sputum test came back as retest test not performed it contained squamous cells and they said it could contain bacteria that would not be that of lower respiratory infection.they just will not do any test that will show the infection.

[mkh9]

The laboratory checks to see if the sputum is spit or actual deep enough actual sputum by reading the stained slide and looking for the number of PMN whilte blood cells per high power field and how many epithelial cells. If there are too many epithelial cells they will reject the sputum as being "spit" and that is how they tell. So it is not personal. It is how we designate a good sample.

[mkh9]

The laboratory checks to see if the sputum is spit or actual deep enough actual sputum by reading the stained slide and looking for the number of PMN whilte blood cells per high power field and how many epithelial cells. If there are too many epithelial cells they will reject the sputum as being "spit" and that is how they tell. So it is not personal. It is how we designate a good sample.

[mkh9]

My lyme friend said that the regular lyme tests are often false negative. So you would have to send your sample to IgeneX to get a accurate test for Lyme and co-infections. I think it is a really good idea. She said you could get a nautropath to agree to send the samples there. I don't know where you find that kind of person but that is her recommendation. She is a chronic Lyme person and has Bartonella and Babesia. She is very knowledgeable about it.
mkh9

[jockojohnson]

i believe  she is but i have already done the igenex thing .do you think i need to do it again?why when the drs take a swab from my throat for gono and chlamydia and send it to a lab why does it come back negative for strep 3 times this has happened we are not testing for strep .3 swabs and no negative for gono or chlamydia wich meens to me they did not do the test we were supposed to do ?it was very difficult to get anyone to do the blood draw the llmd i went to didnt do blood draws and i had a hell of a  time getting a lab to do a courtesy draw.

[mkh9]

So your results were from IgeneX? But did you get tested for the co-infections such as bartonella and babesia and then they have some new strains of lyme? I have to ask my friend about the results then. Since she has it she knows all about that. As for why your test is coming back as strep negative. I never heard of that. The doctor or lab is getting the wrong test ordered. I don't get it.

[mkh9]

So your results were from IgeneX? But did you get tested for the co-infections such as bartonella and babesia and then they have some new strains of lyme? I have to ask my friend about the results then. Since she has it she knows all about that. As for why your test is coming back as strep negative. I never heard of that. The doctor or lab is getting the wrong test ordered. I don't get it.

[jockojohnson]

i am taking augmentin it is helping to clear  my throat infection only recieved a ten day course if this is from staph or h. influenzae or m. catarhalis .then i would at minimum need a 28 day course you would think an ent would know that .you cant just leave people with severe sinusitis for 2 years when it is causing hearing loss .the gram stain should have been done a year and a half ago.a swab should have been taken from the nose.and the sputum should have been done.they could have avoided  the hearing loss and vision loss and the severe pain unbearable pain in the sinuses.they know this stuff .sinusitis is generally fairly easily treated .just identify the pathogen.what a bunch of retards.i cant get them to do it for my son either the symptoms are so obvious sneezing coughing clearing throat fullness in ears pain behind eyes and pain in temples .who cares if theysuspect another type of infection as well just treat the gosh darn sinusitis instead of letting people go deaf and blind.i cant get them to do a gram stain on my son they are letting him lose his hearing.i swear i had menningitis also .my whole back of my head when i touch it was inflamed it was like any sound i heard was trapped there you the fullness in my ears was connected to it .why not do a gram stain ?what a bunch of zipperheads.my digestion is starting to improve as well im starting to feel better and stronger .even when i started to irrigate with peroxide i started to feel much better if i get this stuff out of my throat it may just alleviate much of my problems.it all started in my throat .i told these jackwagons 100 times but they just didnt listen or look there they looked everywhere else but .we knew it was not strep throat .but that is all they would test for .i kept telling them we have had a cold for a year and a half.if it was one of thier children i gaurantee they would handle this differently.

[jockojohnson]

what are the tests i can do in and around the ears ,nose and throat that will show what the heck this is. i know the sputum but that seems hard to get a pure sample i dont .know how you get stuff from your throat to a container without picking up saliva.wcan they swab my throat and do the gram stain.i know that certain bacteria like pertussis can affect glucose levels and protien absorption and cause malabsorption wich would in turn would cause muscle loss .all of wich i have . the drs say it cant happen if you get an infection you never get the effects from them and you can do a strep test and detct every other infection from that one test alone .wtf

[mkh9]

Well, I know you are angry but M. catarrhalis, Staph aureus and H. influenzae can all be normal flora in the throat. Also, there is no protocol for doing a gram stain on a throat specimen you don't do that. There is no point except to look for white blood cells. So, really you may or may not be getting the right treatment. It may just be clearing up something else you have. Rifampin and Zithromax are the treatments for Bartonella. If you have that then its possible the augmentin is helping. Not sure since it is in a different class.

The way to collect a sputum has to be a deep cough not a swab. A swab for a sputum specimen is useless. They have to use a special swab for the pertussis and also special media. It won't grow on regular strep media.

Most of the time the standard treatment is not to use antibiotics they have you steam or use a humidifier and breath that in to oven up the sinuses. If it is Staph aureus they might treat it.

Well, that is all I can say.
take care,
mkh9

[mkh9]

Well, I know you are angry but M. catarrhalis, Staph aureus and H. influenzae can all be normal flora in the throat. Also, there is no protocol for doing a gram stain on a throat specimen you don't do that. There is no point except to look for white blood cells. So, really you may or may not be getting the right treatment. It may just be clearing up something else you have. Rifampin and Zithromax are the treatments for Bartonella. If you have that then its possible the augmentin is helping. Not sure since it is in a different class.

The way to collect a sputum has to be a deep cough not a swab. A swab for a sputum specimen is useless. They have to use a special swab for the pertussis and also special media. It won't grow on regular strep media.

Most of the time the standard treatment is not to use antibiotics they have you steam or use a humidifier and breath that in to oven up the sinuses. If it is Staph aureus they might treat it.

Well, that is all I can say.
take care,
mkh9

[jockojohnson]

i did a western blot and have the p41 p31 and p58was indeterminate.wich is usually considerd a positive but my titer was .2

[mkh9]

What was the range for your test?

[jockojohnson]

by range what do you meen?

[jockojohnson]

i really get a kick outta how everything is set up to convince you that your problems are not real.its very unnerving the way drs gamble with the lives of the masses and just take a shot in the dark guessing at diagnoses .everything they cannot find must just be a herpes virus and they are all considerd to be like a  common cold to .many of these people walk away thinking great i dont have hiv or great i dont have syphilis .then have a lifetime of health issues that eventually lead to heart attacks and organ failures .im watching it happen and have seen it happen time and time again.


thats good medicine.

[mkh9]

Every test has a reference range as to what is positive. So if you say the test was negative what was the cutoff to make it positive?
You still have the yeast infection if that doctor was right. That has to be treated.
I have to ask my lyme friend if low values like that can still mean a positive lyme. She may say yes and you do have similar symptoms. I wonder if you just took doxycycline for a few months if you got better if that would help. I don't know if you have the money to pay for a Lyme literate doctor or LLMD. They could figure it out. I can give you the link if you had the money. They cost a lot and insurance doesn't pay for it.
mkh9

[mkh9]

Every test has a reference range as to what is positive. So if you say the test was negative what was the cutoff to make it positive?
You still have the yeast infection if that doctor was right. That has to be treated.
I have to ask my lyme friend if low values like that can still mean a positive lyme. She may say yes and you do have similar symptoms. I wonder if you just took doxycycline for a few months if you got better if that would help. I don't know if you have the money to pay for a Lyme literate doctor or LLMD. They could figure it out. I can give you the link if you had the money. They cost a lot and insurance doesn't pay for it.
mkh9

[mkh9]

Also, I just talked to my friend who has Lyme and Bartonella, and also Babesia and she thinks you could be positive for Lyme as it doesn't show up on the regular test and also Bartonella. So you should get your doctor to send your labs to Igenex You can go to their website at www.Igenex.com  They explain the lab tests and coinfections. Do you have medicare or regular insurance? She says that medicare will pay for IgeneX so maybe the regular insurance will if you have the doctor send in a approval to the insurance. I would call the insurance and see if they would allow it. If they say you need doctors approval then you have to do the hard work to get one of them to sign for the approval. We can talk about treatment and so forth and/or you can talk to the Lyme forum.  But she says she has symptoms that are like MS too but she doesn't have MS. Your son and if your wife has symptoms should be tested too. If you had an animal or went hiking or grass in the yard any of you could have been bitten by a tick. Now they are saying fleas could be a carrier. I haven't read that yet so I don't know. But ticks are for sure.
mkh9

[jockojohnson]

hey mkh9 i wrote some posts but i guess i wrote them to myself .they are all in this discussion .they follow this comment if you would like to see where i am at .they were intended for you but i posted as an answer and i didnt put your name i guess.

[jockojohnson]

sorry about caps it makes it look as though im yelling .

[mkh9]

No problem. I didn't think you intended on "yelling at me".

[jockojohnson]

THERE ARE ONLINE SITES WHERE YOU CAN ORDER TESTING.I diagnosed someone else i met on this site we corrrespond via texting and his symptoms are identical to mine.so i told him to test for hhv6 because i thought his symptoms were so spot on to what mine were and the evidence that displayed during were uncanny.so he did and he came up positive .meanwhile i was busy ruling out other things but when i heard that he had tested positive i knew from the type of symptoms we have that i would most definately test positive for this too .pretty interesting since we have never met in person.

then i saw the symptoms in my son develop and i had to force his dr to test him and he was positive so i found it for three of us if i could get my  wife to test im willing to bet she has this as well.but this goes to show if there was a dr who practiced this type of diligence they might actually be able to help their patients.

when i go to the drs they all say that since you have so many things going wrong you dont need help .it must be anxiety.so if i had no symptoms then i still wouldnt need help.so its a win win for the drs .i dont beleive i will ever get help.ive been to two of every type of dr but none of them care .i have the gp who was the jerky one he gave me some antibiotics because i told him i probably have another six months of hearing left if im lucky.but he does not know what to test for there are a few ideas that i have but he wont listen to me i know i will find at least one more thing on my own after all i am the one who found the candida in my blood as well

my sons immune system has been weakend by this apparently he was exposed to lyme at some point because his titer is just below being positive and his hhv6 is active again .it came up current infection.so if his immune system is weak could his lyme disease be going in and out of active infection and doing severe damage.i dont think drs know enough about hhv6 .because the knowledge they repeat to me does not correspond to the information i have obtained from the hhv6 foundation.what i dont unnderstand is why they do not try acyclovir when people with encaphalitic symptoms due to herpes .it could help gain control to limit the amount of damage done to the patient .also why isnt there a study being conducted on antiretrovirals for the treatment of herpes when we know that acyclovir helps fight hiv.it would make great sense to test this theory and possibly lead to a cure for herpes .hhv6 is a very bad form of herpes wich can cause ms, dementia, hodgkins ,cancer,and even aids .

i will just post and whenever you can get to it you can get to it i am thankful and greatful for your help .i know that you have your own issues going on and i understand .you have helped to give me the strength to keep driving on when the pain gets to be too much your ideas give me hope and for that am very greatful.hope you are doing well thanks mkh9.

[mkh9]

Hi, I see regarding the testing for HHV6. That is interesting. I have had the same response with doctors regarding when things get too complicated their eyes glaze over. LOL. I actually read a new study that said that when you go in as a complicated person (meaning you don't act dumb) the doctors are 25% more likely to misdiagnose you. I think that was the percent should be higher. So if you don't follow what the doctor says regarding treatment, or if you ask a lot of questions etc. they get distracted and thing about the patient's personality instead of the diagnosis. They tried every angle to get them to not do this and they can't help themselves. So, I guess I won't talk the next time I go in. But I certainly won't take every drug my doctor gives me because by now I would be on valium, Cymbalta, Sevilla, antidepressants, and I don't remember what else he said. It turns out even though he said I have "some kind of fibromyalgia"  My master trainer at the gym has "cured " it. So either he is a miracle worker or I never had it. The Physical therapists all said I had SI joint dysfunction and I don't have that either. So, my back pain has magically disappeared with exercise and stretching. LOL. It is a long story. Also, my doctor said I must have some type of autoimmune disease because I am allergic to a lot of topical antibiotics and things and also have tendontiis. So I should see a Rheumatologist. I said no thanks. I know they like to do a lot of testing and give you a lot of drugs. My best friend was misdiagnosed by a really high end one with Lupus and she went blind from the medication and it turns out her dermatologist said she never had Lupus! So I am careful not to go there. Sorry I am ranting today.

Anyway, I am wondering if you all having HHV6 is not more common then they think and maybe it is common in those that are immuno-compromised or something.

If your son has early Lyme he needs Doxycycline for about 2 months straight. The best lab is to have his blood sent to IgeneX unless they did diagnose him for sure. They can do a western blot to confirm. I still wonder if you have it.

I'm not so sure about acyclovir for treatment of HHV6. It is supposed to be for Herpes simplex. I think for other herpes but I would have to look that up if necessary.

So, anyway I guess you should follow up with the university hospital or ER even whomever will treat you for the yeast. If you have that it is serious as I said. You need to get on the right anti-fungal. Get your blood tested as well.

take care,
  mkh9

[jockojohnson]

i know you have done all that you can and i appreciate that i just want everyone to know my story .so they dont wisk their problem aside because some uncaring dr tells them to.

[mkh9]

HI jockojohnson, I have been busy and tired and some injuries. So, if you have fungus in your blood you better do what that doctor said and go to a university hospital or a place like Mayo Clinic. But the thing is why can't they just give you an oral anti-fungal treatment? I get that if you are immunocompromised you need to dig into why that is and do further  tests though. There is no accurate all fungus test but you could get a PCR test that would say you have a fungus  but that wouldn't help in treatment or finding why you have it. It is serious if you do have a blood fungal infection. You need to get it treated right away. Can you see an infectious disease doctor? Is it possible to get his report that said you have this so you can take it with you and bring your report that you have HH6. Also, that your son has it too. There is a link here and it is not normal. I wouldn't wait any longer.
I am sorry all this has happened. It is awful. There is the Univeristy of Connecticut. Also, called UCONN.
mkh9

[mkh9]

p.s. how did you test yourself for hhv6

[mkh9]

p.s. how did you test yourself for hhv6?

[jockojohnson]

i think they will have to give me help soon i am starting to get sicker again difficulty walking later in the day i get very dizzy i get afraid and lay down wherever i am last night in the kitchen on the tile floor on all fours gagging trying not to throw up .night before wedged myself in the bathroom door so i would not fall .this morning again but this time puking .

[jockojohnson]

do you know of any place to get that test?


went to the er and they said it was bursitis .

[jockojohnson]

going to some type of dr that will take some fluid from the bump now maybe we will get an answer. apparently nobody in the state of ct knows where to do a sputum with a gram stain.

[jockojohnson]

i went for another visit to a gp in my drs office since mine was on vacation.as i brought him up to speed he told me that because i have so many rashes and what not he said we usually call this anxiety.i siad that i have now lost 50 % of my hearing nd 30 %of my vision he said ahh well some people lose their hearing .i said my son is 9 and he is also losing his hearing and it dosent have to happen .he said you cant relate the 2 i said the hell i cant i found hhv6 through my own diagnosis and testing .when i saw the same symptoms in him i found it in him .wher did he get it if its unrelated .

then he saw my blood pressure and said you cant be walking around like this .i was like really why not ?because its not good .what are you taking .we need to change it i said why you said there is nothing wrong with me .it seems like overkill to fix something that is not there.

[jockojohnson]

i went for another visit to a gp in my drs office since mine was on vacation.as i brought him up to speed he told me that because i have so many rashes and what not he said we usually call this anxiety.i siad that i have now lost 50 % of my hearing nd 30 %of my vision he said ahh well some people lose their hearing .i said my son is 9 and he is also losing his hearing and it dosent have to happen .he said you cant relate the 2 i said the hell i cant i found hhv6 through my own diagnosis and testing .when i saw the same symptoms in him i found it in him .wher did he get it if its unrelated .

then he saw my blood pressure and said you cant be walking around like this .i was like really why not ?because its not good .what are you taking .we need to change it i said why you said there is nothing wrong with me .it seems like overkill to fix something that is not there.

[jockojohnson]

later that day i went to an ortho he said he would drain the fluid from my elbow and test it but his test sucked and probably wouldnt reveal much .then he told me dont listen to your other drs .you have candida in your blood it cannot live in your blood unless you are immuno compromised.you  need to go to yale or an academic institution some place that will research your problem .or you will not get the help you need because you are a hard case.

[mkh9]

I think I have heard of the "all virus and all fungus test". But they are not that specific, it is the same one you are talking about.

I wonder what is going on with your elbow. Could be fluid accumulation like bursitis? Or don't know if it is an infection. You should have it looked at.

mkh9

[jockojohnson]

my elbow is swelling up really bad i dont know why it is sticking out like a 1/2 to  3/4 ".and  it is yellow and purple 6 months ago it felt funny but it is progressivly getting worse.it feels full of fluid and its making my arm feel very tight.

[mkh9]

Glad you got help from the cardiologist. He sounds helpful.

Hope your wife is okay.
mkh9

[jockojohnson]

are you aware of the new test that was developed last year that can tell you every virus you have ever had?