I've been having strange symptoms since the middle of August. I got really sick at first, all started with a sore throat, which I thought, oh another sinus issue is coming (I have allergies and take zyrtec every day). A week later I felt like complete crap: could barely get up to get a glass of water, super dizzy, lightheaded, diarrhea, etc... I ended up going to the ER and everything was 'normal' except for the CT scan showed a cyst in my sinus cavity. The dr. said it was nothing to worry about.
I have a good friend who had had similar symptoms at the same time as I was having, but was across the continent. She found out she had mono and told me I should also get tested. My monospot test (or whatever the mono test is) came back negative, but 2 parts of my EBV test were elevated, I know one showed acute, so the Dr. said I had mono. This gave me a ton of relief because I finally had an answer. I am wondering if I could have gotten it from my friend because we had seen each other in May and I know we shared a drink (but I think that is longer than the incubation time period). I also did a rotation in a skilled nursing facility this summer and so I was around various medical issues...
Towards the beginning of this all, after my horrible week, I had a week where I felt great and was biking, swimming, joined a gym etc... Then it came back again. Was I pushing too hard and now my body is taking forever to heal? A couple weeks ago I had 2 good days also.
My main complaints/symptoms are dizziness/brain fog and fatigue. I have also been very anxious and worrisome. The more research I do, the more I worry and question everything. I also think the ER visit was traumatic because now I find myself feeling lightheaded when I see blood etc... so weird because it never bothered me and I am in the medical field. I also notice every little thing on my body that I never noticed before... I don't know how much of what I'm feeling is anxiety? I also have pretty bad tmj, so I am used to constant headaches etc...
This is all affecting my life so much and I find myself feeling depressed.
I am a doctorate student and graduate in December, and I already have a job lined up, I have a great boyfriend, etc... so I do feel lucky, but I haven't been myself the past few months and am scared I'll be like this the rest of my life? I'm in my last rotation in a local school system and I'm scared they think I'm making it all up and it's been a struggle to try to pretend like I feel okay. Basically I go do my rotation and then come home and sit around and watch netflix etc... When I'm working, I can't wait to come home and lay down.
Is it all the EBV/mono and it is just taking me a loooong time to get over? How do I not worry about lyme disease, cancer, etc...? I have been drinking a ton of water and orange juice. I also eat a little virgin coconut oil with honey every day and take a prenatal vitamin every night. I don't know what else to do. Any advice or insight? Thanks so much for reading this, it would help to know I'm not alone.
Hi! First of all, please stop researching online! I know it's not easy to do (and ironically, it's probably how you found this site), but trust me, if you're having anxiety/worries, reading horror stories online is NOT what you need! I know this from experience! Your case sounds quite similar to mine... I'll try to shorten mine a bit: Came down with what I thought was the flu in May of 2007. Had a lot of stuff going on in my life at that time, so I tried to "tough it out". Not sure if that made things worse, but after a few weeks of intense symptoms (by this time had been dx'ed w/mono, despite multiple negative monospot results), started to feel better. Here's where a made a HUGE mistake... I had been exercising prior to getting sick. Since I felt pretty much back to normal, I decided to pick up where I had left off. I handled it fine, but within a week my symptoms came back, and this is where the extreme fatigue set in. Not trying to scare you, but the fatigue for me was overwhelming and just would not go away. I used up all my sick time (& vacation time!) at work and finally had to go on unpaid FMLA. By around September I started working part-days again, and I was able to SLOWLY (*VERY IMPORTANT*) get back to full-time. After work, all I could do was rest (Video games intead of Netflix for me, haha!), which it turns out was really the best thing I could have done. In the end, what you need to do is get as much rest as possible. If possible (and I know it's probably not), it would be great if you could take a month - even a week - and just put your whole life "on hold", just rest as much as you can. I really wouldn't worry about lyme, etc., because it really does sound like mono/EBV, especially considering your test results. So good luck; I hope you start feeling better soon! And I hope I answered all your questions; if not, don't be afraid to ask any more!
Forgot to mention... it took me about a year until I felt like I should try working out again. Of course by that point I was completely out of shape! But I made sure I took things very slowly, and I feel like I've made some great gains... not back to where I was yet, but I'm just being extra cautious... you know what they say about being safe/sorry!!
hank you so much for your replies! It makes me feel better. I am unable to put things on hold now since I only have 3 weeks left of my rotation (I can't believe it!!!). The good thing is that I have a week and a half off when I'm done before graduation activities (3 pretty intense days of things on campus), which I don't know how I'll get through if I still feel like this. My mom is flying in, my dad and stepmom, other family, my boyfriend's family is meeting my family for the first time (and I think there may be a proposal around that time...). I don't know how I'm going to get through it all if I'm not better by then. I need to figure out how to put the anxiety to rest I think. I wonder if I should ask my dr. for xanax or something for a short term thing?
Anyways, I will have that week and a half off, graduate, then have basically a month and a half off before I start my job. I have to wait for my college to get me my final transcripts, apply for my temp license, register for boards, all that fun stuff, BUT I will have a lot of time off. I'm hoping that if I'm still sick, that time off will help heal me? I just can't imagine starting a new job feeling like I do and getting through graduation, the holidays etc... but like I said, at least I will have no work to do for a while.
I've been worried this week that I have a heart problem. I feel like such a hypochondriac! The fatigue and light-headedness are scary sometimes.
Yesterday I had this surge for maybe an hour where I almost felt my usual self and had this shot of energy/optimism. Today not so much... Did you find that you felt better slowly or was it a more sudden recovery? Thanks again and sorry I write so much!
Chronic headaches, eye pain, hyper sensativity to sounds, overy emotional, IBS symptoms, neck cracks, stabbing sensations, neuropathy, ankles hurt, muscles and migrating joint pain, UTI like symptoms, felt like you got the worst flu then never recovered, sleep issues, feel like you are going to gag occasionally?
The only other health problems I've really had are sinus/allergy issues, tmj problems and anxiety/depression at times. I've never had any ovarian issues. Also, I have never been bitten by a tick to my knowledge. The dr's I've been to said they didn't feel a lymes test was necessary, so I guess I'll trust them for now...
These chronic intracellular bacterial infections suppress the immune system, cause any latent suppressed viruses to re-emerge, ie: HSV1, HSV2, Cytomegalovirus, EBV, Enteroviruses AND most importantly HHV6. HHV6 has been implicated in MS and other autoimmune illnesses. When the immune system is suppressed T4 killer cells cannot do their job correctly opening up the potential for cancers depending on your genetic make-up. Also macrophages are dissabled and yeast infections can go out of control. So, there is a possibility you have a chronic INTRACELLULAR bacterial infection (that will not show up on ANY labcorp or Quest test) coupled w/ reactivated viral infections and fungal infections.
MRI , CT, chest, EKG will not show this infection. It's in the white blood cells, you have to crack open the Leukocytes to find its genetic fingerprint. Lymes and Mycoplasma patients show pretty much normal test results, nothing remarkable, one way or another. but this bacteria creates chronic inflammation.
macrolides ie; mino, azithro, omnicef, doxy. But for a long time. could be months worth. standard ABX innefective as these bacterias lack a cell wall, hence Mycoplasmas or L shaped bacteria. VERY slow growing, divides every 10-28 days
pennicillins make this worse as you already could have the fungal infections. Check out www IMMED org and look under autoimmune or infectious disease. This guy is a Nobel nominee cellular pathologist that has written 3 world renown citation classics and 600 peer reviewed and accepted papers. Hes a smart cookie. he helped me figure out what was going on with me. His name Is Prof Dr Garth Nicolson. Did you know if you give people with ALS< MS< Lupus and other autoimmune illnesses , they get better? An ALS patient in a wheelchair is a death sentence. Give IV Rocephin and they will start walking again. Fact.
Mycoplasmas have been implicated in Lukemia and all autoimmune illnesses, but Dr's give you Cymbalta and bezodiazapam and tell you its all in your head.
Your blood tests will NOT show this. It's INTRACELLULAR, thats why standard ABX will not work, you need the macrolides to catch tese things as they leave the cell. Your fatigue issues are from the Cytokines being released into your bloodstream and the lipids exiting you cell membranes
Mycoplasmas are communicable, ie mycoplasma Pnuemonia. But these other mycos are more pathogenic., Your working in a hospital facility is a very good possibility for this being passed. Some are aspirated . Also some mycos can be passed through intercourse via body fluids.
the bacteria is in the white blood cell "crap' they toss after a centrifuge. A babesia infection is inthe red blood cells, the CBC will show within range, but the malaria like flagella will be consuming the RBC's. It causes them to swell up and not pass through the capillaries properly, They will be bloated and ridgid where they need to be maleable. Think of it this way, if there is not an available test on hand for a bacteria(s) not commonly looked for, you will not find an infection.
Also, get a IFA HHV6 test done to see if you have a high HHV6 titre. Not a crappy labcorp/quest.
If your symptoms get worse, like fasticulations, neuropathy, hot and cold sensations on skin, just weird symptoms that don't seem cohesive there are only a few possibilities. AIDS, HIV, Syphillis, Lymes or Mycoplasmas. I would think your EBV would have subsided by now, but since it hasn't you need to be more cognizant for this possibility.
If they get worse, contact me and I will tell you where to get treatment and proper testing. If it is Lymes, your WB will show negative as the bacteria is pleomorphic and changes surface proteins continously. Very rare you will actually test positive.
Mycoplasma Fermentans Incognitus is a mutated Visna virus shell with a Brucella bacterium inserted. Dont believe me? Do some research. i talked to 3 Nobel prize nominees and 1 winner while doing research. i could practically write a dissertation.
Update- I am feeling a lot better in the last week or two. My dizziness is basically gone and I am left with lethargy. I still sleep quite a bit at night (10 hrs usually) and cannot expend too much energy, but otherwise I think I am on the road to recovery :) Hopefully it lasts!
I wish i would of seen this thread sooner, or I would have told you where she was going. She tells, anyone that visits here they have Lyme, AND need super expensive tests to find out definitively. It's been the last scam per say since the documentary "under our skin" which has been refuted by John Hopkins hosptal, Mayo clinic and many more..I could go on, but trust me when I say don't get sucked in.
Scam? First of all, I am a male. These tests look for the actual DNA in the White blood cells. You have to fracture the cell to get to the bacteria. Labcorp and Quest does not offer ANYTHING like that AND they don't have technicians trained to know what they are looking for. The only SCAM going on is the Pharma companies paying off Dr's at Johns Hopkins and Mayo and Cleveland clinic to deny this bacteria exists. If you search NIH records back to the 60's the NIH states quite clearly that Mycoplasmas are implicated in Cancers, Leukemia, and other illnesses. If you search US Patent 5,242,820 it CLEARLY shows what this bacteria can do to you FROM THE DR THAT PATENTED IT.
"Other Disease States in Which M. fermentans incognitus Has Been Implicated In addition to AIDS, M. fermentans incognitus has been implicated in a number of other Disease states including Chronic Fatigue Syndrome, Wegener's Disease, Sarcoidosis, respiratory distress syndrome, Kiku-chi's disease, autoimmune diseases such as Collagen Vascular Disease and Lupus, and chronic debilitating diseases such as Alzheimer's Disease. M. fermentans incognitus may be either a causative agent of these diseases or a key co-factor in these diseases. P. Treatment of M. fermentans incognitus Infection M. fermentans incognitus is known to be sensitive to a number of antibiotics, including doxycycline, quinalones such as ciprofloxacin, chloramphenicol and tetracycline. Therefore, effective treatment of any of the above implicated diseases should include administration of antibiotics to which M. fermentans incognitus is sensitive." [Slides: Dr. Lo's portrait, patent cover, patent excerpt] "
Once again, Sporque, you have been dissproven. What do you have to say now" I'd love to hear your response. Have a good day!
This is a html version of the file http://www4.od.nih.gov/cfs/Jan01minutes/ mycoreg.pdf.
provided without charge for educational fair use only in accordance with Title 17 U.S.C. Section 107
Other Related documents at US DHHS National Institutes of Health
for gulf war illness & chronic fatigue syndrome November 2, 1999
Original Video Script for CDC's Nov 2nd Chronic Fatigue Syndrome Coordinating Committee Meeting
Mycoplasmas Are Contagious
by Sean & Leslee Dudley
Thousands of people diagnosed with Chronic Fatigue Syndrome, Fibromyalgia and Gulf War Illness, from all over our country and the world have tested positive for mycoplasmas. Mycoplasmas are contagious. Fifty-six percent of the victims on our MYCOPLASMA REGISTRY had an airborne, contagious onset.
Mycoplasmas: Family Disease It is a slow growing epidemic that is infecting and devastating entire families. Almost 60% of the Chronic Fatigue Syndrome patients on our registry, have more than one person in their households who have tested positive for mycoplasma infections. These are husbands and wives, fathers and sons, mothers and daughters, mothers & sons, extended family members and even household pets. [Slides of families tested positive
Dr. Nicolson's PCR Blood Test
Now, there is an accurate PCR blood test and protocol designed by Drs. Garth and Nancy Nicolson, to diagnose and treat these mycoplasma infections. These tests are far more accurate than previous antibody or blood culture tests. Once long term antibiotic treatment is started, patients begin recovering. No new drugs need to be developed. We and hundreds of MYCOPLASMA REGISTRY members are recovering after one to three years on antibiotics. Unfortunately the CDC's criminal diversion of CFS research funds has caused delays in diagnosis and treatment. Some patients who have suffered years of infections may need to take antibiotics for the rest of their lives. [Slide of Dr. Nicolson at The Institute for Molecular Medicine]
Dr. Lo's Mycoplasma Patent
The overwhelming body of evidence from researchers forces us to conclude that there is a national, if not global epidemic. Even Dr. Shyh-Ching Lo, pathologist for the Department of Defense who discovered and patented mycoplasma fermentans incognitus and mycoplasma penetrans states in his own patents, that Mycoplasma fermentans is the cause of Chronic Fatigue Syndrome.
United States Patent Patent Number: 5,242,820
Date of Patent: Sep. 7, 1993
Pathogenic Mycoplasma Inventor:
Shyh-Ching Lo, Potomac, Md. Assignee: American Registry of Pathology Washington, D.C [Dept. of Defense]
Filed: June 6, 1991 [originally applied for June 18, 1986]
SO, Sporque...should I go on and on with this info that suggests further testing is necessary, OR, are you just going keep droning on and on about how "she" dosen't know what "she" is talking about and suggests expensive tests that are a sham. . But I'm not a Dr, but I'm just about as informed if not better than your "doctors" are.. Further testing is necessary in my opinion if you want to get an answer. The goverment knows what Mycoplasmas are capable of doing, it's a shame your doctors don't.
Labcorp dosen't do those tests and the labs that are certified do. Sorry bout not moving along. All my info is correct and from the best sources. When someone has MONO for over 3 months, something is wrong. Especially the fatigue and other issues. I think I'll just hang around here for a spell though. Since ya offered so kindly..
Hey Lake, my suggestion to you is get an IFA HHV6 test and see if your HHV6 titre is high. LOVE to hear your other symptoms. (chronic sore throat, headaches) You dr possibly did a EBV test, saw it high and said your virus has reactivated. When in reality, it could be SEVERAL viruses and bacterial infections. Ones symptoms might even mimmic HIV because they are all over the place. You might have considered even HIV testing. But you will never test positive. Just my educated opinion.
Why do you say I will never test positive? I have had testing out to 6 months. No bacterial found as well. I have thrush, headaches, and sore throat. All other symptoms are gone. I had them all!!! Still no HIV poz test. The only reason I'm concerned is I'm 7 months pregnant.
I understand your being cautious about what I am saying, because it seems unreal to you and since you have seen many docs and you still have many symptoms.
This one Mycoplasma utilizes the Visna Virus outer shell, but has a mutated Brucella bacterium in it. It is missing ONE protein to be considered the HIV virus. You will show all the symptomology, but will never test positive. This is Mycoplasma Fermentans-Incognitus. It is a bacteria, not a virus. AND YET, because it is INTRACELLULAR, it will never show up on a standard Labcorp/Quest test. Their tests look for a high WBC , because they test for bacteria OUTSIDE of the cell.
Just a question, spouse/boyfriend in military? Go hiking, work with animals? What was the event closest to you getting ill? Receive blood? There is a very good possibility that you could transmit this to the baby through the placental cord blood. It has been documented before by ILADS doctors and I have seen military spouses pass this to their children. It IS a possibility. Research Mycoplasmas/Lymes Placenta barrier.
When did you get ill? Was it like no other flu you had? And never got better?
Well first I never really had the flew. I never threw up anyway. Only once right after I was pregnant. (But the pregnancy happened later.... In may of this year) This all started in February. I started having stomach problems. Then I had a blood in my stool. (confirmed by doc) after that horrible migranes in march I went to er cause at this point I considered HIV a factor. All symptoms started 2 weeks after unprotected sex with a guy who I have known for 5 years. He did have a blood transfusion but i think it was cause he lost a lot of blood from mma fighting!? Anyways I started having tingling in my hands, feet, and my headaches were intense! I went through a cat scan and they diagnosed me with a sinus infection. ( I didn't believe it) took 3 z packs didn't work! I started having diahera bad and just felt so run down! My skin started to break out in red little rashes out of no where. By the time this all happened my throat started hurting and still hurts today think it actually has gotten worse. It's all red and irritated. Also had little white spots on my tonsils for 1-2 days and my toungue has been every fliipin color in the rainbow. Green, yellow, black and brown. "I do smoke tho" and all the toungue colors are not from food! It's raised and currdle like thick patchy coated like substance in the back. It feels like fungus and also like something is stuck when I swallow. Generally feels better when I eat. There is also teeth marks on my tongue swollen perhaps? And I know was never there before. As of today almost 9 months later..... And 6-7 doctors later NO ANSWERS! Symptoms today are more mild but still headaches everyday, skin sensitivity, like edema maybe pregnancy? Sore throat and crazy tongue. I even considered leukemia or aids! My WBC is 12.7 rbc is 3.87 my igg and igm is normal and yes the infectious disease dr said maybe I re- activated the ebv virus the numbers were 322 i think. My Crp was .29 I think and no Cmv was detected. They did see oral hsv I knew I had cause my dr. Told me I was recently infected within 6 months ( from him) wonderful! And I don't know but do you think hsv would be the cause of all this? I mean I am pregnant and my immune system is down from pregnancy??? What's your take on all this? I go back to infectious disease specialist on tomorrow at noon.
I also wanted to mention I went to ent doc and he said acid reflux, pills didn't work! Another doc said oral lukipikia I researched and that's like ridiculous! What a a dumb doctor! Another doc said anxiety... Well wouldn't anyone in my case I said! Da and I have had 4 doctors look at my ears cause I complained of ear infection since feb. 2 of them said no nothing?! Ya right!!!!! And the other ones said yes fluid in my ears but gave me nothing ??? I feel like they all don't give a ****!
Your symptoms are EXACTLY like mine, except I am a male. In my opinion you need to run, not walk to a LLMD who knows what this is and is willing to treat this. I had white spots, tongue issues/black, yellow, green, cheese like stuff on tongue. Explosive diarrhea, OCD, Anxiety , etc.
In my opinion, and I am not a Dr, there is a great possibility you have a Mycoplasma infection, possibly Mycoplasma Genitalia. But it could also be considered Lymes. No standard med doc is gonna figure this out. Ever.
Contact ILADS and find a Dr near you and get an appt. Also post your symptoms on the Lymes pages, we discuss Lymes Borrelia, Bartonella, Babesia, HGE, and Mycoplasmas. We see this all the time. That's why I am here on the page trying to help. I can lead you to help, but I cant MAKE you actually help yourself. In my opinion, you need further testing, but your ID doctor is going to look at you like you are crazy.
When you go, ask him to do a 24 Hr Holter ECG test. Have him look at the T wave. Also have him do a blood volume test to see how many red blood cells are doing their job.
Also have him run a IFA test on HHV6 to see what you titre is. HHV6 is a normally suppressed Herpes 6 viral infection. Dont get the HHV6 antibody (IgG) standard test. The HHV6 IFA is a much better test to determine if your virus has reactivated. The problem with these intracellular infections is they weaken our immune systems, along with smoking, sugary foods, glutens and other "crud" we eat on a daily basis. There is a possibility all of these viruses were transmitted to you via your encounter, or they have become "unsuppressed". because of the bacteria(s)
Also have him look at CD4/CD8 ratio profile. and Absolute CD4 helper.
On a Complete metabolic panel test, you might show high on Creatinine and Glucose.
have him check you MTHFR for a gene mutation C677T.
Also Hemaglobin A1C. It might show high for diabetes.
Also Complement C4a test. high value is 650. Mine was 4050.
Also Creatine Kinase test will show high..in my opinion.
Remember, I am not a Dr, but someone who is well informed. Further testing is warrented. Please copy these tests and give them to you doctor at your appointment.
Ok I will. And like I said I'm pregnant and my urine gets checked every week also just hAd blood drawn for diabetes and glucose drink test done nothing found there. Did your throat hurt? How do you get Lyme disease? And I have swollen lymph nodes in my neck since feb there small and mobile. One more thing my skin does thus wired indentation thing hard to explain but it's not pitted edema like it's fine when I press on it doesn't leave a mark. However you know when you where socks it leaves a mark from wearing them for so long... ( normal ) well my skin leaves marks from the fabric I wear just lightly touching something loose clothing or a blanket that has a design in it I press my skin down for 30 seconds and the indentation is on my skin for not just seconds but 15-20 min ??? Sound strange ?? Drs say pregnancy or I need more water or retaining water I dont think so this started before pregnancy like in march errrr
Throat constatntly hurts, Lymph nodes swollen, neck cracks. Do you have or had a persistant cough with no sputum? A dry cough? I had these red small "dots" all over my trunk. Those are a sign of a viral infection or several infections. "brain fog" Skin sensativaties, box cutter like cuts on my fingers, same thing with my socks as well. Would leave patterns for a very long time. No, it's not strange to me at all. But to a standard doctor, he'd say you were "anxious" or "hyper vigalant" and prescribe Ativan or benzodiazapams or Prozac.
Once you are diaged with anxiety disorder, you might as well forget ANY standard doc helping you. I have seen it too many times. In my OPINION, it's not HIV. in my OPINION it's either Lymes or a Mycoplasma infection that only a Lyme doctor or ILADS dr would understand and not dissmiss your symptoms.
AND CD57 test. The CD57 looks for immune dysfunction. It's not a perfect marker, but it works for HIV and Lymes. Normal range is 100-300. If you are under 200 or WAY low like around 60 or below, you prob have Lymes/Myco infection since you have tested Neg for HIV for so long. BTW, as far a Lymes I got mine the same way you did, I believe.
Well I will ask my doc tomorrow she is infectious disease specialist. Hope I can figure this out!!! I dont really have dry cough maybe a little but nothing outa the norm. Thanks and I will get back to you tomorrow.
I went back to the dr. and she did more blood tests. She is having a lyme test done, thyroid, ANA, liver enzymes etc... Curious for the results. I looked on the lyme site you mentioned and tried to find one around me, but there are none. I'm still up and down. I have talked with others who have had long bouts of ebv/mono, so I am still thinking that's what it is. I haven't been able to fully take it easy since this is my last rotation in my doctorate program. I have two more days left and then I'll have a couple weeks to fully rest. We'll see...
Allergynerd, I hate to use Youtube as a link, but the International Lyme And Associated Disease Society had a 2011 conference in Canada and someone put videos on youtube. PLEASE, search for 2011 ILADS Conference-Dr Horowitz -Updates on diagnosis and treatment. There you will find him talking about Babesia and Bartonella species that they have never seen before and no tests had been developed for them, so people test neg on Bart and Babs. Also that Mycoplasma Fermentans-Incognitus and Mycoplasma Genitalium (GULF WAR ILLNESS BACTERIA) is being found and transmitted as well.
There is a video on youtube of a speaker doing a talk on Mycoplasma Genitalium called THE LITTLE PATHOGEN THAT COULD/ queen anne science cafe about this bacteria that has surpassed Chlamydia as a STD and Dr's have no clue because you test neg for it on standard STD tests, but it affects you systemically. How about that?????
You don't need a Lyme specialist to diagnose Lyme. LLMDs have gotten in loads of trouble for medical malpractice relating to lyme..That's why you can't find any..There's not many left. Please follow ewford's advice with little weight. Trust me. :)
You do, actually. Around the world researchers are finding new species in the mix of bacteria found in sick patients. Bartonella like objects. But not Bartonella. Babesia like objects. But not Babesia. Spheroblasts supposededly only found in China and showing up in the blood of ill patients. you wanna follow Sporkers advice? Then do so...but be prepared to live the rest of your life in pain. I'm getting better. Because I listened to Nobel winners. Not people like Sporque.
Take this for what it is....IF you are lucky enough to get in at the mayo, or Cleveland, or Yale hospitals, you think they will go to the Nth degree to find out what is wrong? No. Will they treat you with more than 4 weeks worth of ABX. No. Will you be dissmissed as being an anxiety patient. Yes.
Lyme doctors who treat Lymes, various coinfections and Mycoplasmas do so knowing it might take years to rid the body of infection (or at least get it to the point that the immune system is strong enough to hold that infection in check).
I have friends diaged with Gulf War Illness, went to Walter Reed Hospital, and have been painkillers and discharged. And yet they knew they were still ill. I gave them info and corraborating info about treatment and guess what.......they are getting better.
Once again Sporque. Why is it you troll these boards? Is it to help people or to hinder their finding a cure? Just asking.
Think I'm crazy now? Here's the problem with that diag. She will only give you 4 weeks of ABX and that in the majority of patients is not long enough. You might need MONTHS. Ask your doc if she is aware of the coinfections of Bartonella, Babesia, Ehrlichia, and Mycoplasmas. If she does not....run...do not walk to a ILADS doctor who will treat you appropriately.
What I have found in interviews (1 particular 13 yr old girl I'll use as an example) Bullseye rash, given 4 weeks abx, told she was cured. Now she is 19, Arthritis, Chronic Fatigue, Myalgias, Chronic headaches, IBS and a HYSTERECTOMY. All the bacteria was not killed. Too short of a treatment regime. I see it all the time.
Please take my advice. Sporque in my OPINION is incorrect. And once again I have helped someone get a proper diag. Let me know how it goes Nerd.
Mine's in DC. one of the best. He's a founder of ILADS , Dr Joseph Jemsek. If you want to check out his page, it's under The Jemsek Specialty Clinic. In my opinion, my health means everything. So that is why I was so diligent to find answers and a reputable physician. In my opinion, DO NOT use a Dr that utilizes the "Marshall Protocol". You will never get well.
On a side note: Are you planning on being in the medical field? I remember seeing you say "rotation" which means medical to me. Remember to take ALL you have learned/will learn about this in your future profession to help others. And also remember, some patients will do their homework when they are being ignored.
Hi, I am from the lyme forum, and I just wanted to say that I am so glad that you took ewford's advice. He is who helped me when I was searching for answers. My story is in my journal if you'd like to take a peak, but through all of my problems, I never got an answer, nor did I have a doc. that would listen to me.
Ewford was right on the money with everything he said to me. He gave me very well informed advice and I sought out a LLMD. I went there with all of my symptoms and dx's with a timeline, that very same day I was placed on doxy for 30 days to start. On the second month, I was on flagyl and zithromax for 30 days, The next 30 days I will be on zithromax and doxy.
LLMD's are out there, and they do listen. My doc. is from NY. I do have to travel for 3 1/2 hrs. but it is worth it!! I may not get better right away, but I am finally on the right path.
Good luck to you and come join us on the lyme forum, its a great place to be with very knowledgable people.
Hello. I want to add that I too was set on the right path but I believe the Lord used ewford to set me in the right direction. When you get sick sore throat, swollen lymph nodes, nerves jumping and shaking, pain in joints and feeling hot and cold in your legs etc you freak out and especially when all the doctors out there can't help you or even want to listen to you. I started treatment with an LLMD about alittle more than a month ago and I know it's going to take time but I have that hope in the lord that he is going help me get better. So glad to hear that you got tested I know all of this is pricey but who can put a price on your health. I have heard from so many in a forum I am on that they get miles better but it does take time and I hope that you get better!
I am wondering about what to do next? I have found 3 LLMDs in the Kansas City area (3 hours from me), so I guess I will call them and try to make an appt, but what if they are super full and won't take me for a long time? Do I try to convince my dr. to put me on higher doses of antibiotics and for a longer time? What if after this cycle I am feeling better? Do I believe that I am better? I have gotten in touch with a couple friends of friends who had lyme's and they seemed to do the typical antibiotics cycle and were back to normal, so I am still hopeful. I am nervous about taking boards and starting my job (start date right now is Feb 2nd). I am trying to think positive.
Glad to hear you got an answer and can start working on getting better! Also, sorry I haven't replied to your other post in so long, but I've been VERY busy lately! Perhaps you won't want to listen to me now since I thought your problems were caused by EBV (which, in my defense, you did admit to having high results on your test), but to my knowledge, EBV and Lyme's are not related. My guess is that you already had EBV, then you contracted Lyme's (although it could be the other way around... impossible to say now), and the 2 have been having a heyday ever since, at your expense! I think the lesson to be learned here is that testing is very important in determining what someone is dealing with... and even then, you may test positive for more than 1 thing (as you did). It's nearly impossible to make a diagnosis on symptoms alone, but everyone here is trying to do just that, based on our own experiences... that's actually the whole point of these forums!! Again, glad to hear that you're making progress, and hopefully in the future you'll be able to help out someone who's in the same boat you've been in! :-)
It seems like this post talks about lyme. How is it transmitted? Could it spread easily in a househld? Parents to kids and vice versa? What are the msin symptoms and what kind of test is done to diagnose it?
Seems you may be able to be a source for me. IDC if you are a DR. or not. Four years now I have been sick, misdiagnosed, mistreadted, and now MISS tell it like it is.
Four years ago, I had a dental filling done imroperly, yes a dental filling started a snowball thats a avalnche. Failed root canal, cyst improperly removed, with no antibiotics at the time. Then Avelox, shot of Rochephin, then 72 hrs later horrible fever and sickness, treated with collidial silver. I trusted the wrong Dr. now, 5 oral surgeries later, am in need of another one. Bone graft in the jawbone and being told I need a major jaw reconstruction. I will give the cliff notes version. Been through many specialties and have so many issues I'll tell you what I can remember.
Have had PICC lines and I.v meds. Envanz (emitriptin)? Vorcanazole, rocephin 14 days piggy back, EVERY class of oral antibiotics except Vincya. Also, I have a neighbor who is VERY ill worse than me cancer survivor. She rcv. Vincaymycin for supposed "endocardidtis" Both of us are being jerked around, pushed off, left for dead. WE HAVN'T DIED, THANK GOD I AM ON A Mission.
SO, currently I have diagnosed with and suffer from:
atypical Trigeminal nuralgia, Cronic EBV, Kidney Issues (recently) following a, VERY HIGH IGM level, amenima (that has come and gone,for myself and my friend) TMJ ( previous), damage to 5 cranial nerves, optic neuropathy, was told possible endocardidits, taccychardia, Celiac disease, had to have endometrial biopsy? a to why, shortness of breath, Unilateral edema, yes, been told its impossible foot and handswole up like a balloon, pain and swelling in lymphs, tingling and numbness in limbs, extreme fatigue, doccumented heptomegly of liver and spleen, um...sweilling of the face and neck, frequent puss like lesions in my throat( cultured not strep, bacterial and viral negative) dizzyness, falling out, damage to heart valves, many negative tests but no answers. I can NOT gain weight, night sweats, intermitten fevers, weight loss of over 30 lbs, with no sucess of weight gain regardless of nutition good and bad. Black eye ( on the side of my face that has issues) cronic sinuisitis, cysts on breast, ovaries( friend) kidney myself, abnormal high and low blood pressure., memory loss, loss peferal vision, demylenizaion of optic nerve, hemifascial spasms, memrory loss, loss of congative abaility, suspected stroke, small superficial blood clot, ect
HIV, Hep A B C, Major General Oncology, quite a few more.......NO DR CAN TELL ME WHATS UP?
May be more can not think well please anyone can you help?
I have a reactivation of EBV with symptoms of heart palpitations, extreme fatigue, anxiety, low stress tolerance, body aches, headaches, head pressure etc. I have many more symptoms but won't go on and on. I only found relief when I saw a Naturopathic Doctor which is a N.D. She ordered the correct blood tests (a Viral Panel) on the first visit which revealed a reactivation of EBV. A Naturopathic Doctor in your area might help! I had seen many M.D's, a cardiologist, General Practitioners, Psychiatrist, Therapist etc. After seeing about 5-6 M.D.'s over the course of about 1 year I still had no relief and the symptoms were getting progressively worse that I had to go on medical leave from my job. Only after seeing a Naturopath did I start to see results of feeling better. A Naturopathic Doctor in your area may provide the help needed! You can Google Naturopathic Doctor to find one in your area. The Naturopathic Doctor has changed my life. I now feel like I have my life back or at least it's starting to come back.
I had EBV reactivation back in May and I think it's finally going back into being dormant. I changed my diet (ate better and ate less junk / fast food), drank plenty of water, and started taking a general multivitamin. I'm not 100% but a lot better than before...so there is hope. Just focus on resting and taking care of your body to boost your immune system. I will take another ebv test the end of this month; I hope it says its not reactivated.
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