Discussions By Condition: I cannot get a diagnosis.

Is it EBV, CFS, Lyme or What?

Posted In: I cannot get a diagnosis. 105 Replies
  • Posted By: sonicbmx
  • June 10, 2007
  • 09:39 AM

i tested positive for Epstein-Barr Virus (EBV) w/ high titers: (1.91, EBV-EA; 4.07, IgG-AB), equivocal Lyme C6 (1.04), equivocal HHV6 IgG (1:320 & 10), and now i have Chronic Fatigue Syndrome (CFS). doctors don't believe its Lyme altho i have many symptoms. I'm thinking Chronic Lyme or Post Lyme. One Dr (Phd) told me i had a lot of fungus in my blood and the underlying issue was Lyme (viewed blood under powerful microscope). Some Drs don't beleive in CFS, and they get upset with me when i talk about Lyme.

Muscle Biopsy shows Mitochondrial Myopathy and i'm waiting to see Neuromuscular Dr (23Jul) for add'l testing and review. i'm having a sleep study on 10Jun. The following tests came back normal since my last post: PET Scan, Chest X-Ray, Full Body CT Scan w/ Heart analysis. Some Drs don't beleive in CFS, and they get upset with me when i talk about Lyme.

Chronic/Post Lyme makes sense because of my background. i grew up in NJ & PA.. i played and rode my bike in the woods all the time - it was my home away from home. i've been racing bikes in the mountains since 1994 (PA, VT, WV, Canada (Quebec, Montreal & Vancouver), Mexico, Europe (France, Slovenia, Switzerland). i got sick as a dog in VT in 97, and also WV after returning from Europe in 01. Drs are not taking me serious.. they are only relying on Western Blot Test. i insisted on another one.. and i'm seeing a Hematologist 11Jun.

i went to a CFS clinic and they put me on Heparin, T3 Thyroid, and Testosterone cream. i had low Natural killer cell titer (NKC WBC Lymphs, 686; NKC Phenotyping, 64). I'm also taking supps Beta Glucan and Immunoglobulin. i removed Soy and Whest from my diet in April - Nothing changed.

Drs keep pushing antidpressants (altho i'm not depressed and i saw a shrink to confirm).. what is that all about? they think they AD's will help me sleep (which was the exact opposite of what happened when i tried one 37.5mg tablet of Effexor in Jan. i barely slept 4 hrs per night for an entire week! i've been ill for 14 monthsdoes anyone have any ideas or suggestions?

ps - this is an update.. search previous posts for history.

Reply Flag this Discussion
  • How many vaccines have you had? total? How many were required as a prerequesite fir entering other countries with your touring?Look into NAET therapyReikiherbal supplements, vitamins and minerals to boost your immune systemLook up Oil of Oregano. It has antibacterial, antiviral and antifungal propertiesDo yourself a favor, find a doctor who knows CFS and knows how to treat itTake herbs and such under doc supervision. Some combinations can be dangerous.Traditional Medicine is overwhelmed by the CFS numbers and noone can figure out the cause.Many of us are working on thatin the meantime, CFS patients are getting results and relief from symptoms by the above mentioned methods
    Anonymous 42789 Replies Flag this Response
  • hmmm.... i have read your previous posts. im a female 28, from pa, have ebv, hhv6, diagnosed with cfs. I share alot of your symptoms. I too have "discomfort" in my left rib cage area but not exactly as you describe it. I have been to a cfs center for 2 years was on immunoglobin injections, estrogens,testosterone,thyroid meds, b 12 injections, and countless other "supplements". I began getting severe nausea and burning of my stomach with diahhrea - an endo done in mar of 07 resulted with a negative biopsy, celiac, h plori, etc. no ulcers just showed severe inflamation of my stomach (gastritis) for which I am now taking prilosec otc daily. as for the cause? doctors dont know. The gastro Dr. thought to next have my thyroid checked ( i was already taking thyroid meds from the cfs center) I made an appointment with my primary care physician and had my thyroid levels checked and the lab results for my tsh were 9.8! (normal are between 1 and 5) making me hypothyroid. Needless to say i no longer go to the cfs center. Anyways I am still having diarrhea and pain in my left side (which my pcp told me that theres nothing there to cause anything in that area) I just recently started having swelling in my eyelids and hands(my pcp told me im to young to have arthritis) I know cfs causes joint pain - but w/o swelling??? I have what feels like to me muscle weakness. i am curious as to the muscle biopsy you had and what is mitochondrial myopathy? the symptoms? I also get migrains alot. I am now beginning to THINK I have lupus. I found an arthritis and autoimmunity center through UPMC on-line and made an appointment. Maybe I can finally get somewhere...
    Anonymous 42789 Replies Flag this Response
  • hmmmm.... I have read your previous posts. I am a female from PA, with ebv, hhv6, and have cfs. I also have discomfort in my left rib cage area although not exactly as you describe it. I was being treated at a cfs center and receiving immunoglobin injections, estrogen, testosterone, thyroid meds, b-12 injections, anti-virals, etc. I began having severe nausea and burning in my stomach with diarrhea. I had an endo done in mar 07 with negative results for ulcers, h-pylori,celiac,etc. It did show severe inflamation of the stomach (gastritis) for which i now take prilosec otc daily. The gastro Dr. didnt have an answer as to what caused the inflamation but suggested I follow up with my primary care physician and have my thyroid checked(i was already taking thyroid meds from the cfs center) so I did and my tsh levels came back 9.8! (normal are 1 - 5) so needless to say i no longer go to the cfs center or take any of the meds/supplements they had me on. I now have swelling of my eyelids and hands in the joints(my pcp says im to young to have arthritis) As for the pain in my side - my pcp says there is nothing there to cause it. I also have migrains, and what i describe as muscle weakness. I am curious about the muscle biopsy you mentioned. What is mitochondrial myopathy? What are/were your symptoms.
    Anonymous 42789 Replies Flag this Response
  • I just tested positive for Lyme, myself. However, the first round of tests- the basic ELISA, etc- was negative. It was only til my blood was tested by the Igenex lab in California, that I came up positive (even according to the CDC standards). If you haven't gotten tested through there, I would demand your doctors order the test through that lab. It's free to get the materials from Igenex. You can take the packet to any lab, have the blood drawn, and then Igenex (who even provides the shipping label/package) will send the results to your doctor. I tested positive, but my doctor said that I had also been exposed to EBV at some point.. and that I actually had mono. I have no idea when, for either.. but I myself was bit by a tick in PA, back in 1987. Of course I also spent a lot of time outdoors, camping, etc in my home state of CA. I started having health problems in 1998 or so, while I was in college- in a place also known for deer ticks. You have every right to get yourself proper testing. And You could have more than just Lyme, but if you have Lyme, you need to treat it. :)
    sylvie 31 Replies Flag this Response
  • Antidepressants are used with some success for a lot of things other than those for which they are licensed (i.e. depression, etc.). Tricyclic antidepressants in low doses have been used to assist sleep, although there is some debate over the quality of the sleep promoted. Effexor is a different category of antidepressant in that it is a serotonin reuptake inhibitor. I believe this category of antidepressants is often used on people with sleeping disorders to perk them up throughout the day so they feel naturally tired at night. People have experimented with serotonin reuptake inhibitors to combat ME (chronic fatigue), but it is just that - experimenting. Some reckon they have helped, but about an equal number have had to discontinue them because of adverse reactions. The doctors probably are just trying to help but don't know what to do.
    Anonymous 42789 Replies Flag this Response
  • It is awful how doctors want to "treat" immune dysfuntion with pills that suppress the immune system violent responses and make people more susceptible to infections.Antidepressants mess up the blood count!Better Try NAET- I was at the end of my rope when I found it, as an act of love, I ask you to try NAET, Oriental Medicine and Reiki.There is more than one thing affecting you, you will need a combination of treatments, real treatments- pills are not treatments in a bottle- they don't go in and sooth or repair anything.Best-Fruity.
    Eatafruit78 960 Replies Flag this Response
  • Hi everyoneJust so you know, EBV is very common among the population. By middle age, 90% of adults will test positive for antibodies to the virus. Most of us never get sick or only get very mildly ill, and never know we had it. Only a select few actually ever develop mono.HHV6 is at least as common among the population as EBV. About 95% of the population test positive for antibodies to it. Most people get it as small children (under 2), and have a rash and fever for just a few days.Once you have been infected with these two viruses, you will always test positive to it. It doesn't necessarily mean that it is related to your current symptoms at all.I'm unsure whether multiple individuals or merely a single individual continues to suggest NAET on all the forums I have read here. I think that this may be a wonderful suggestion for some patients, but not necessarily for everyone. I am inherently suspicious of any treatment which is recommended for any health problem--it sounds suspiciously like a cure-all to me.As for the diagnosis of your condition, I can't really help you. I just wanted to give you some more information on what I do know. Best of luck.
    Anonymous 42789 Replies Flag this Response
  • to the last post about 90% of the population testing postive for ebv antibodies as well as hhv6(aka roseola) That is true. Testing positive for the antibodies shows that at some point in your life you have been EXPOSED to the viruses. others test positive for ACTIVE ebv and/or hhv6 and have symtoms for years on end.
    Anonymous 42789 Replies Flag this Response
  • hematologist couldn't help me w/ fungus blood test.. suggested Allergist/Immunologist. i talked my Rheumy into ordering Lyme PCR test. trying to get my GP or one of my 5 ID Drs to run my blood thru IgeneX.com. i ordered a PCR and Urine test from them today.. hoping to get a Dr to draw blood and submit thru insur. i decided to cancel future appts at Holtorf Medical Group (aka Hormone & Longevity Med Center) and ID Med until further notice - more bills than treatment.as for muscle biopsy.. i'm seeing Neurologist 12Jun. UCLA Neuromuscular Dr is booked until late JUL. my Rheumy spoke with biopsy pathologist.. says that my condition (not sure what specific name is) is common in people who are physically active.symptoms: my legs feel weak/fatigue. they tingle and feee as if i exercised all night. they feet tired/weak when i climbed stairs or squat. i was not recovering from exercise on my statinary bike as i should. i plan to see as many Neuros as it takes to get more details. i'll post again once i have more info.does anyone know the purpose of Heparin treatment (besides coagulation defect)? ALL of my Drs are skeptical about it and all HMG says is that my labs show monomer fibrin titer called for it.
    sonicbmx 44 Replies Flag this Response
  • With note to the EBV tests, I think that these are notriously difficult to interpret. As the two earlier posters mentioned, 'positive' tests are very common. As the levels of antibodies are measured rather than just their presence, I think that the number being reported as positive is less than those who have been in contact with the disease. I thought it was about 40 %, which is still high. Elevated EBV antibody levels have been noted in some ME sufferers, but this is no means conclusive. I think that only the lab can comment how positive your positive was.
    Anonymous 42789 Replies Flag this Response
  • CFS is the broad diagnosis. It appears many with CFS are testing positive for many viruses (bacteria) Lyme, HH6, EBV and Lupus. It is confusing. Many of us are attempting to figure it out and sort through the confusion.
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Thanks for the encouragement that you posted on my thread. I agree with one of the previous posters here that for Lyme, you should get a Western Blot done at the Igenex lab in California. They'll report on all bands. I am not certain that I have Lyme, but it took me a year to decide to try treatment for it. It seemed drastic to put in a PICC line and start IV antibiotics, but I was and am desperate; it's just too bad that I developed an allergic reaction to Ceftriaxone before I could finish the course. I think going to a naturopathic doctor is a good thing too. I share your experience with doctors trying to treat you for depression. I remember the neurologist that I was seeing last year at an HMO asked me more questions about my mental state than he did about my physical symptoms. It wasn't until he redid the EMG and found abnormalities that he changed his tune. I'm only 30 years old and am living with my parents because I can't be left alone and can't drive. My faith in God is the only thing that gets me through this. It's more difficult than going through the 18 months of chemotherapy and radiation 17 years ago. It sounds like you've had a trying time too. I hope they find some answers soon for you. Kevin
    kman543210 27 Replies Flag this Response
  • Hi everyoneJust so you know, EBV is very common among the population. By middle age, 90% of adults will test positive for antibodies to the virus. Most of us never get sick or only get very mildly ill, and never know we had it. Only a select few actually ever develop mono.HHV6 is at least as common among the population as EBV. About 95% of the population test positive for antibodies to it. Most people get it as small children (under 2), and have a rash and fever for just a few days.Once you have been infected with these two viruses, you will always test positive to it. It doesn't necessarily mean that it is related to your current symptoms at all.I'm unsure whether multiple individuals or merely a single individual continues to suggest NAET on all the forums I have read here. I think that this may be a wonderful suggestion for some patients, but not necessarily for everyone. I am inherently suspicious of any treatment which is recommended for any health problem--it sounds suspiciously like a cure-all to me.As for the diagnosis of your condition, I can't really help you. I just wanted to give you some more information on what I do know. Best of luck. As far as NAET goes, it is not one person with different user names asking everyone to try it. I must be the person who spends the most time talking about it- I was a Fashion Design student until Nov. 2006 when I collapsed with Immune Dysfuntion and I could not even move to make it to the bathroom. Besides me- there is a person who is a Doctor of Oriental Medicine here who is now about to start her training in NAET, recommending it after also being a patient treated with NAET for sinuses and allergies. And there is also a gentleman who had been trained and being working with it for over a decade. And there are a few new people talking about it- but I have never spoken with them directly in more than one posting. As far as "cure all" remedies, everyone out there uses pain killers, antihistamines and lots and lots of antibiotics- NAET does not "cure all", it certainly can't fix broken bones- but it is the approach and its theory that allows the body to accept nutrients that it otherwise rejects. NAET also takes lots of stress off the immune system, allowing it to relax and build itsef, hence the patient comes out of the debilitating, toxic stage- and every case is different.I spend over $1000 out of my pocket- and I was told to take benadryl and "stop worrying" because "I was not sick". I got not help- and the antihistamines were killing me- my heart hurt so bad with palpitations.To spend $135 in a NAET session that lasted 2 hours, fixed 3 of my food intolerances in 25 hours and I was given support and a sense that I was not crazy, it was a miracle to me.That is why I have to come here every hour and ask people to try NAET.Not even my parents believed that I was really sick- my spouse was not sure either- at points he thought I had an "attitude" problem.I wish everyone well- I believe this forum is a great place.Take care everyone.Best,Fruity.
    Eatafruit78 960 Replies Flag this Response
  • dear kman, God Bless You and may you find peace everyday. Thank you for being so un-edited with your story. There are many in this forum with ME/CFS symptoms and they are all here looking for answers/help. Be Well
    Anonymous 42789 Replies Flag this Response
  • God Bless you for putting up with your symtoms (and doctors!).Mitochondria are the parts of your cells that run your metabolism. When they are not working properly, you can get really fatigued, as well as neuro symptoms such as headaches.That your muscle biopsy is positive is a serious clue. Hopefully your neurologist will be able to give you an answer. Mitochondrial dysfunction can be genetic or acquired. I hope you get your answer and the proper treatment. There are some mitochondrial supplements, such as co-enzyme Q10, alpha-lipoic acid, and L-carnitine. I would definitely WAIT before starting these, though until 1) your doctor gets the necesary tests performed, such as lactate to pyruvate ratio, etc and 2) until he okays them- they may not even be helpful in your particular case.Best wished to you.-e
    Anonymous 42789 Replies Flag this Response
  • HHV6 is at least as common among the population as EBV. About 95% of the population test positive for antibodies to it. Most people get it as small children (under 2), and have a rash and fever for just a few days. Once you have been infected with these two viruses, you will always test positive to it. It doesn't necessarily mean that it is related to your current symptoms at all. I have read the same things regarding EBV. By the time you are 35 years old, you have probably been infected with it. My questin to the above poster or any one who can answer: Shouldn't you test IMMUNE to the viruses, once infected rather than "POSITIVE". Isn't there a difference? I thought the immune system's job was to kick in and provide immunity from previous "infections/infiltrators". Oddly enough, I never tested "immune" to one particular vaccine that I had received as an adult. I was told the vaccine "did not take" on me. I was also allergic to the vaccine and/or preservative most likely. Thanks in advance for answering the question.
    Anonymous 42789 Replies Flag this Response
  • v52people are testing positive for ebv antibodies - showing that at some point they were exposed and the body(immune system) did produce them to fight off the virus. I used to be a patient at a cfs center and they do more extensive testing mine showed a present ebv infection (the test has to do with an igg igm and iga i believe) one of those tell a past infection another a post infection and the other is a present infection - atleast thats how it was explained to me by my dr. - he also diagnosed me as having immune disfunction with it - explaining that viruses can hide in your body, muscles, etc. and after awhile they start to take over your immune system and you begin to build up toxins - the more toxins you build up the sicker you become the viruses then can take over. thus the whole detox theory. Makes sense? sure somewhat but after 2 years of treatment and lots of $$$ I cant say i am any better off today than before. i am better in some areas but continue to develop more symptoms and they just didnt seem to know how to treat me anymore either. I THOUGHT vaccines are made of whatever it is that they are trying to prevent you from getting.... so you build up antibodies to it and then it doesnt affect you?? im probably way off on that one - but i do know my cfs dr. was not a fan of vaccines and advised against them saying they just build up more toxins in the body and also CAUSE people to get cfs. I cannot say if these are facts or not - its what i was told by my dr. i believe some of it to a point but when your desperate and sick i think you can and will believe anything - no matter what the cost.
    Anonymous 42789 Replies Flag this Response
  • my take is.. if you have post or chronic lyme (diagnosed or not), your immune system will always be compromised. you have to first deal with the lyme before you can treat anything else. the 1st hurdle is proving you have lyme, the 2nd is getting proper treatment. i was told the US doesn't offer the proper treatment.. something about the IV drug being illegal in the US. treatment is expensive and offered outside the US. my MDs don't like when i talk about this person or his treatment. and why do they get so defensive when i mention Post or Chronic Lyme?sleep study results are in.. and my ENT couldn't make anything of it - nothing was normal. he had no explanation and suggested i see my Neuro. he could not figure out the causes for the results. he said "this rarely happens." discussion states "poor sleep efficiency may result in inaccurate estimation of the severity of sleep related breathing disorders and may reflect underlying psychophysiologic or medical conditions. clinical correlation is suggested". nothing stated in the impression or recommendations applys to me.i did a lot of moving around (55x). Sleep Onset 66 min, REM Latency 89 min, Stage 1 Latency 66 min, Latency to REM 155 min, Sleep Efficiency 46%, total Stage Changes 45, Stage Changes per Hr 28.6. There's tons of info but i have no idea what most of this means.. can anyone shed some light?sleep study place mentioned mold and UARS (upper airway respiratory syndrome) as signs of how i tested. the Lyme specialist i saw mentioned my blood had fungus and my underlying problem was Lyme. the pieces of the puzzle are coming together and beginning to make sense. i have to find an MD who's willing to do the proper tests and answer my questions and not sweep my symptoms under the rug.
    sonicbmx 44 Replies Flag this Response
  • It probably comes down to a definition of immune. It doesn't mean that you can't catch something, it just means that you are resistant to it. In periods of decreased immunity (e.g. a bout of flu), these viruses that lurk in our bodies can gain an upper hand and symptoms can flare up (a cold sore being a prime example). I think the term 'positive' just relates to a measurement above a threshold in the same sense that 'high' might.
    Anonymous 42789 Replies Flag this Response
  • It's all under "Lyme Disease" You need to get to an LLMD (Lyme-literate medical doctor) - hard to find. Search Lymenet. I'm thinking the HHV-6 high titers are probably an activated infection. It's amazingly terrible what all these infections, no doubt all carried on a tick or mosquito, can do to us. I'm a wreck too. But am going to fight to get on a real good antiviral (Valcyte is one) for the HHV-6 & EBV as well Minocin, which I've researched as a good antibiotic for the borrelia. It's awful how ALL of us get the wrong diagnosis for years...where are the Lyme clinics next to the cancer clinics? The CDC is just flat-out wrong on all this. Write your congressperson - if you have the energy!!
    Anonymous 42789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.