viral/bacterial induced

Discussion in 'Fibromyalgia Main Forum' started by valliali, Feb 15, 2009.

  1. valliali

    valliali New Member

    i have been told that i have chronic fatigue/autonomic dysfunction by a very prominent infectious disease doc who treats many cfs patients. i work with a team of about six doctors, all of whom agree that my illness is from a virus or infection. my initial symptoms began shortly after having lived in africa, and included very swollen lymph glands, swollen arthritic joints and a very stiff neck. i no longer have any joint inflammation, but two years later, i still get very swollen glands and a stiff neck. all my doctors refer to this "virus or infection" that i had/have. my ID doc tested me for 18 viruses/infections known to cause cfs, like all the herpes, epstein barr, cmv, mycoplasma and others. i was negative for all. so i'm left wondering WHAT virus or infection all these docs are alluding to? it seems pretty apparent to me that i did have some kind of viral or infectious process going on, but what?????
    i am wondering if anyone can suggest other tests, other viruses known to lead to such disorders?
  2. ladybugmandy

    ladybugmandy Member

    would it be possible to list all the pathogens they tested for and the results?

    may i ask which prominent doctor you see?

  3. valliali

    valliali New Member

    hi sue -
    i actually do not have the results yet. i see dr. montoya at stanford. he is amazing. i see him in about five more weeks for the results, and it was another stanford doctor who pulled them up on the computer and told me they all came back negative, but couldn't give me more info. she said i was negative for the antibodies for all of the viruses/bacteria tested, except for herpes six, which was positive for antibodies but negative for active infection. she said 95% of the world's population has the antibodies to this herpes.
  4. hopabout

    hopabout New Member

    We were gentically set up to have some bad connections in our bodies. We take in virus and bacteria when other people don't. They seem to harbor themselves deep within our tissues and most test won't show them at all. You may have 1/2 of what you were tested for. Lyme is like that, most of the time the tests are wrong. that is a proven fact. It does not matter what the item is.

    However, since I have studied this for 18 years I have found a bacteria that happens in our bodies because of soil and fish consumption. The closest of these doctors investigations that I study is Dr. Shoemaker on this website. Neurotoxins. It is right on target.

    You are not going to get 100% well. But, this protocol makes more sense than any I have read and |I know the pathways this particular bacteria takes and it spells CFIDS/FMS/LUPUS/RA, maybe even depression.

    If you study all neurological disease and trace them back 10,000 years like I have, the majority of people with the worse disease live near oceans. You will also find that twin births (which they say now are actually 1 in 8 when conceived ) are highly prelevant in the Islands off Finland.... islands, ocean, water, bay, rivers, ponds, lakes.... like Huntington disease in upper Venizuela.

    Its got my vote, but it does not matter, if you get rid of that one, another may come.... use the protocols to rid yourself of toxic waste in the kidneys. that will make the difference. And, be aware that you may need to repeat that same protocol from time to time ....

    hope this helps, hopabout
  5. Timaca

    Timaca New Member

    You are in good hands with Dr. Montoya. Listen to what he has to say. Good luck with your next appt with him.

    Best, Timaca
  6. ladybugmandy

    ladybugmandy Member

    wow. interesting. i wonder if you have active infection anyway, even though your antibodies do not indicate it. that is sort of what happened with me, i think.

    did they test RNase L? you may want to ask for that test but timaca is right, you are in great hands with montoya. lets see what he says...

    keep us posted!
  7. valliali

    valliali New Member

    thanks you guys. good suggestions. i did not have the rnase yet, and will ask dr montoya about that. he is so amazing, and i feel so fortunate to have been referred to him. i had never heard of him prior to seeing him, and only learned of his many wonderful achievements after seeing him.

    i do believe that i still have something active. almost every day, my lymph nodes continue to swell up. sometimes i don't feel them at all, and other times they feel huge. i don't have joint swelling anymore though, but do continue to have serious neck stiffness. i understand that genetically, people with cfs and/or POTS (which was my original diagnosis), may overreact to an infection or virus that passes, but that the immune system continues to react to. mine seems to have been active for awhile, if it isn't still. so that is why i wonder. and i also wonder why i would have tested negative for antibodies to all of them except the herpes six, if the viruses dr montoya tested me for are the ones most commonly associated with cfs.

    dr montoya said that i sound a great deal like his cfs patients. however, i am inclined to think my symptoms are more aligned with an autonomic nervous system dysfunction, as i have not really suffered from fatigue until recently, like within the last three months of two years of being sick. but i tested negative for pots and the like. so i don't really know where i stand, and don't yet have a diagnosis. i just know i fit somewhere in one of these "syndromes," i just don't know why. but all my doctors refer to this "virus" or infection i had, and i keep asking "what virus??" they all say they don't know.
  8. Nanie46

    Nanie46 Moderator

    Hi vallali,

    Sometimes the testing for certain bacteria, etc is not 100% accurate, so that makes diagnosis more difficult.

    Certain tests, like Borrelia burdorferi (lyme) should be done at Igenex lab in CA or MDL in NJ.

    There are also alot of other vector borne diseases, as you know.

    Just as an example...and I'm not saying you have the same thing....I have had FM symptoms for 21 years....

    I was tested for lyme disease 3 times.....first 2 times at other labs...all negative, and last time at Igenex lab in CA.

    3 times I was told by 3 different docs that I didn't have lyme....but, I knew that Igenex was the best lab for this. I did research and got a copy of my Igenex western blot.

    Even though the overall interpretation said "negative" (the part the Dr looked at), I knew how to read the western blot, band by band. I immediately knew that my results were very significant.

    I contacted a lyme specialist and they confirmed my suspicions about the results. I had a 6 hr appt with the specialist and am now getting lyme treatment.

    I tell you that to make a point that even when a test result is negative, it may not be accurate, or a Dr may not be an expert in testing or reading results of certain illnesses...and make sure you a get a copy of all results.

    If I had taken the Dr's word for it, I still wouldn't have the right diagnosis.

    My FM Dr dealt mostly with viruses, so he was not an expert on lyme recognition, testing/best labs, how to read a western blot, etc.

    My lyme Dr told me he would consider me to have FM and CFS caused by lyme disease.

    Again, I am not saying you have lyme, but just telling you my story to make some points.

    I am adding some links for you to look over....just keep plugging and researching and eventually you will find the right answer.

    I totally agree with you that your problem is from an infectious cause.

    page 498 of:

    pages 4-5, 7, 9-11, 22-27

    Good luck and keep us updated.
  9. valliali

    valliali New Member

    hi nanie-
    well i am very interested in lyme's as a possibility. when i returned from africa, i lived in rural pennsylvania and maryland, and became sick about a month after returning, which i believe is long enough for one to feel the effects of lyme. i spent a lot of time outdoors, though i don't recall a tick bite. i did get bitten by a tick in africa.
    however, i was tested by igenex. i am very confused by my results. i was positive on the igg for band 41, and indeterminate on band 31. overall, negative. my IFA titer was also indeterminate.
    i know many have said that a llmd would consider this positive.
    but, i do have to say, that i am a little skeptical of lyme's. i completely believe that people suffer from it, but i do wonder if it is over-diagnosed. sorry if this is offending anyone, and i truly believe that if people feel better from treatment then it doesn't matter if its lyme's, co infection, or anything else, but that getting better is the most important. yet, because my results are SO weak, i definitely don't want to go down the path of spending a ton of money to see a doctor who doesn't take insurance to be on long-term antibiotics that aren't going to help. i think a lot of people who are diagnosed with lyme but have something else may feel better on antibiotics because of its anti inflammatory processes, but then as soon as they stop, feel sick again. so i have read a lot of stories about people spending five, ten years on antibiotics.
    i hope this isn't coming off as denying anyone who has been diagnosed and treated for lyme as if i am doubting them, like so many doctors do. i have just as equally heard many stories of people who were very, very sick and who became 100% better from lyme treatment. i just also feel like they test very positive for lyme's. this indeterminate stuff, i don't know...
    i am interested in hearing your story though, nanie. do you feel better from treatment? how long have you been on it? what if you were to stop it? how many bands did you have positive on your igenex test?
    thank you for your suggestion. it is something i think about a lot, and if that should be my next step.
  10. AquariusGirl

    AquariusGirl New Member

    Just wondering...
  11. Nanie46

    Nanie46 Moderator


    Lyme is a clinical diagnosis made by looking at a patients history, symptoms, and supported by labwork.

    Consider this:

    1. You have a history of a tickbite in Africa.

    2. You lived in a tick infested area on returning to the US.

    3. You had an Igenex western blot showing band 41 + and band 31 IND. Unless you had a lyme vaccine during the short time it was on the market before being recalled, band 31 is significant.

    Band 31 (outer surface protein A) is so species specific that they used it to make the lyme vaccine.

    My LLMD told me that an IND reading on a species specific band is like a doesn't matter how "dark" or "light" the fingerprint is still the same fingerprint.

    Dr Burrascano says in his diagnostic and treatment guidelines, page 7, that you only need to see band 41 and one species specific band to make a's the link again...

    4. you have seen many Dr's who cannot find anything wrong....the typical story.

    5. you had joint swelling and pain and still have swollen glands and a stiff neck....all symptoms on the lyme disease checklist.

    6. You were diagnosed with CFS...and many people who have lyme were once diagnosed with CFS or FM or both.

    7. There are 300 species of Borrelia bacteria...about 15 in the US...probably different ones in Africa.

    8. There are many combinations of symptoms that people present with who have lyme (and coinfections). do the symptom check list in Dr Burrascano's paper, pages 9-11.

    9. Ticks also carry many co-infections. It is possible that you also have a coinfection.

    I don't know how long ago it was since you had your Igenex testing, or how long after your symptoms began that you had it done.

    I know you want your health back. I understand completely.

    If I were you, I would see a LLMD. What state do you live in now?

    Your history, symptoms and Igenex testing are VERY suspicious.

    I just saw my LLMD for the first time 1 week ago and started 3 meds that evening. I am having mild herxing. Thank goodness it hasn't been bad.

    I have had some increased headache, increased ringing in my ears, increased soreness/pain around my ankles, wrists and knees, and some increased muscle twitching in my extremities.

    They said I will improve slowly over about 6 months. I have had a FM diagnosis for 21 years.

    Go to the Lyme Board here and read my 3 posts titled:

    My Igenex results are in...

    Had my first LLMD visit today and it was fantastic and 6 hours long!

    Advice that my LLMD gave me at my first appt.

    Let me know what you are thinking after reading all this. Good luck.
  12. Forebearance

    Forebearance Member

    Hi V,

    I hope you can figure out what is causing your health issues.

    I agree with Hopabout that Dr. Shoemaker is on the cutting edge of understanding CFS and FM. I think his books are really valuable to read.

    Like you, I have a very weak and iffy Western Blot result. I never thought I had Lyme. I am doing treatment for neurotoxin poisoning at the moment. In my case it's mold toxins that are bothering me. I decided to try taking some colloidal silver, which is a natural anti-microbial. It gave me a Herx reaction! So now I am wondering if I could have a "twist of Lyme" in my disease cocktail, as Lisette puts it. I did just find out I have a CD 57 of 64, which is suggestive of Lyme.

    Or maybe I have some other bacteria. Whatever it is, I want to get it out. So I'm continuing to take the colloidal silver. I can't see myself taking prescription antibiotics for a long time, because they really disagree with me. They're made from mold, after all.

    I know not everyone is comfortable with making decisions about what to take without a doctor's guidance. I'm glad you have a bunch of good doctors helping you out.


  13. valliali

    valliali New Member

    thank you guys so much for your really insightful responses.
    nanie, you definitely broke it down for me. i have read that about band 31, which definitely piqued my interest in seeing a llmd. i actually run westerns for my job, so i know exactly what it means when a band is bright and sometimes light - but definitely a difference between totally not there and somewhat there.
    i live in california, and i know there are two very well-reputed llmds in my area. they are just very, very expensive!!! and that is okay, as long as i get better, but i just don't want to end up being one of the folks on antibiotics for years with their doctors continuing to tell them to just keep paying to see them and get their medications.
    my igenex testing came back a couple of weeks ago.
    i am glad that you are responding to your treatment. it sounds like one won't truly know until they actually try. i hope that you greatly benefit from the antibiotics.

    forebearance, what is colloidal silver? i have never heard of it. where does one get it? what are the side effects? is it specifically designed for detoxing mold, or just detoxing in general?
    i am very overwhelmed by all the detoxing protocols out there. i have to admit, i am very skeptical. i believe in detoxing, fully, but i also think that people are trying to make money, as we all are, by luring us into their protocols and products. many of my doctors are very skeptical about some of the detoxing protocols i have mentioned. however, i definitely don't think that doctors are the final-say, as i rely much more greatly on people's responses. so i'm always interested in learning more about what is actually working. it sounds like you have results, though perhaps there is also something more going on. have you retested for lyme after taking the silver???
  14. Nanie46

    Nanie46 Moderator


    Thanks, valliali.

    I wish you the very best in getting the proper diagnosis and treatment. Follow your instincts. Make sure you also get a really good eval for coinfections.

    One reason why people may not improve as much as expected is undiagnosed/untreated coinfections....tick borne and otherwise.

    Your best defense is a good lots of research.

    Best of luck to you.
  15. munch1958

    munch1958 Member

    The following two reports by Allen Steere and Yale state that if a person has band 41 (or flagellin), Lyme symptoms, and they do not have severe periodontal disease or syphilis, they have Lyme borreliosis:

    1) Allen Steere in 1986, when he developed the first CDC Method to diagnose Lyme, recommended: ” Perform serial Western Blots to look for changing and expanding IgM and IgG antibodies,” since Lyme is a borrelisis, a relapsing fever, and the changing antibodies is a reflection of the varying antigens- and that, THIS CHANGING phenomenon means β€œthe spirochete remains alive throughout the illness.”

    In that full text report, Steere said one can distinguish between Lyme and syphilis, when one only sees band 41 (anti-flagellar antibody) in a person complaining of Chronic Fatigue Syndrome or Fibromyalgia.

    2) Yale and CT Agricultural experiment Station- the full pdf:

    Use of recombinant antigens of Borrelia burgdorferi in serologic tests for diagnosis of lyme borreliosis.

    Magnarelli LA, Fikrig E, Padula SJ, Anderson JF, Flavell RA.

    Department of Entomology, Connecticut Agricultural Experiment Station, New Haven 06504, USA.

    Recombinant antigens of outer surface proteins (Osps) OspA, OspB, OspC, OspE, and OspF of Borrelia burgdorferi sensu stricto and of p41-G, an antigenic region of flagellin of this spirochete, were tested with human sera in class-specific and polyvalent enzyme-linked immunosorbent assays (ELISAs). In analyses for immunoglobulin M (IgM) antibodies, 18 (85.7%) of 21 serum samples from persons who had been diagnosed as having Lyme borreliosis on the basis of the presence of erythema migrans reacted positively in ELISAs with one or more Osp antigens or the p41-G antigen. Eleven serum samples contained antibodies to OspC antigen, and of these, six also reacted to the p41-G antigen and to one or more of the other recombinant antigens. The remaining five serum samples reacted solely to OspC (n = 4) or to OspC plus OspA and OspE without reactivity to p41-G (n = 1). In analyses for IgG antibodies, seropositivity was comparable to that of IgM analyses and was marked by predominant reactivity to p41-G, OspC, and OspF. Similarly, all 21 serum samples were positive in polyvalent and class-specific ELISAs with whole-cell B. burgdorferi. Minor cross-reactivity was noted when sera from persons who had syphilis, periodontitis or other oral infections, or rheumatoid arthritis were tested with OspC, OspE, OspF, and p41-G. With relatively high degrees of specificity, ELISAs with recombinant antigens, particularly OspC and p41-G, can help to confirm B. burgdorferi infections.
    PMID: 8788993 [PubMed - indexed for MEDLINE]

    See Dr Kent Holtorf's page on Lyme -- Why this info didn't trickle down to all FFC docs is what I want to know:

  16. simonedb

    simonedb Member

    curious, could someone have syphilis and not have had it pickd up in routine std tests?

    secondly, I recall reading something about shoemaker and the cigaurtera, that certain sorts of anesthesia could have same harmful effect. mine cfs became fullblown after anesthesia, could be connection some believe. but i took the vision test at sm's site and didnt fail it.
  17. Nanie46

    Nanie46 Moderator

    It is possible that the anesthesia was a stressor that reactivated an infection that had been dormant.
  18. Forebearance

    Forebearance Member

    Hi again V,

    Colloidal silver is very fine particles of silver dispersed in water. You get it at the health food store. It doesn't have side effects, as far as I know, unless you really super overdose on it. Then it turns you blue. As long as you use a reputable store brand and don't make your own, you're pretty safe from that happening. The amount of silver you actually get is really, really tiny.

    Colloidal silver kills microbes. CS is like a substitute for antibiotics. It has nothing to do with detoxing. Detoxing is removing poisons from the body.

    Lyme disease is complicated, because the bacteria that cause the infection also produce neurotoxins. So if you have Lyme disease, you're being both infected and poisoned at the same time.

    People who have chronic Lyme disease are likely to have one of the Lyme susceptible genotypes that Dr. Shoemaker talks about. If you have one of those genotypes, you have trouble excreting the poisons that the Lyme bacteria make. So they build up inside you. So you do hear people with chronic Lyme talking about taking stuff to draw the toxins out.

    Unfortunately, the word "detoxing" has been used a lot to describe products in health food stores that remove everyday accumulations of junk that come from living in the modern world. That's not what I mean when I use it.

    The kind of detoxing I am doing is as serious as the detoxing you would need if you were bitten by a brown recluse spider. Mold toxins are dangerous poisons. People have died from them.

    I had heard other people talking about colloidal silver for a long time, and I finally tried it myself. I've only been taking it a few weeks, and I've been Herxing the entire time. Ugh. So no, I haven't re-tested myself for Lyme yet. I'll wait a while.

    [This Message was Edited on 02/17/2009]
  19. valliali

    valliali New Member

    thanks, forebearance! i'm going to try it out the next time i go to my co-op. it sounds like no matter what is going on with me, i need to detox!
  20. kellygirl

    kellygirl Member

    Since having anesthesia for a simple surgery in Feb '08, I have not been right since with pain. Today, I feel as the CFS is back. I had the viral onset in the late '80's with mono.

    I don't know what else could have triggered all of these symptoms. I worked so hard to be functioning again and not I feel like crap.

    Keep trudging along.

    This proves to me, though, that there is something to anesthesia triggering dormant viruses.