FFC'ers & Others ...Chronic Viruses & Bacteria...Not so Bad?!

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Oct 25, 2005.

  1. CAAnnieB

    CAAnnieB New Member

    Hi Everyone,

    I recently had this thought...What if most of the general population would also test positive for chronic viruses & bacterial infections? We FMers & CFIDS patients go to the FFC's or knowledgeable Dr's who test for all these things like Mycoplasma, Lyme, HPV, etc, etc...But just because we have been exposed or infected with these thingees, & we show antibodies for them does not necessarily mean anything, right?

    I remember when one of our sons was REALLY sick...He was no older than 2...The Dr. ran some blood tests & I remember him saying that he tested positive for Mycoplasmic Pneumonia, but that it wasn't his current problem...(I'm guessing his body showed the antibodies....That's why he said it had happened earlier in his life)So, he said it was no big deal.

    So, when they do all the blood work testing at the FFC's (or elsewhere); are they looking for current/ active infections or are they just detecting that somewhere along the road you were exposed and therefore have the antibodies ?

    This is "bugging" me! I hope people aren't getting ripped off with all this testing. And I'd REALLY hate to think that people were doing unecessary treatments or antibiotics.

    Maybe someone can explain this to me? Has it been proven that we have a higher incidence of these exposures/ positive tests than the general population or are they just finding because they are testing? ...

    Thanks for your thoughts & info! It's not my intent to criticize testing, but I'd really like to know if there are statistics out there re: these infections/ exposures.

    Blessings,
    Annie
  2. laura81655

    laura81655 New Member

    I was told by the FFC that my numbers for EBV were high. I did some research on EBV and it said that 95% of Americans have had the virus, it is a member of the Herpes family.
    Ok...well chickenpox and Shingles are too, and our numbers would be high with that also because we always carry this once we have had it.
    Just not sure what to think about the viruses they find, unless they are truly "active".

    Laura
  3. Juloo

    Juloo Member

    I am not (yet) going to the FFC, but I have had testing by two different care givers. Just recently I was looking at the bloodwork report. It actually breaks down the testing into four different things that are being looked at for EBV. (Sorry, don't have the form with me.)

    Then underneath the results (which includes out-of-range values for each of the four things), there is a chart. It shows which combination of the results need to be positive for a diagnosis of past infection, current active infection, or chronic infection.

    Besides this, all of us react differently to viruses. If the avian flu hit, many many would be exposed. Many would get sick then better. Some would get sick and die. It is our individual response to this that requires higher level treatment.
  4. CAAnnieB

    CAAnnieB New Member

    Laura, Juloo & others,
    Yes! You are getting my ponderings! I wasn't sure if I was making sense to anyone else!I am hoping that someone can explain how they determine if an infection is a past exposure, chronic/ but latent, chronic/ but active or acute/ active...

    Juloo, it sounds like your lab results explain more than just a positive antibody reaction, right?

    Then I'm thinking about how different we all are...Some say they feel their Immune-compromised....They "catch" everything & are sick often. Me, I'm just the opposite. I feel like my body's Immune system is on hypervigilance. I rarely catch what is floating around my family/ environment. So I guess some people who are Immune-compromised might have a tougher time with these infections?

    Or even if you have a hypervigilant Immune System; maybe you are constantly trying to fight these chronic "infections" when you really don't need to? Hmmmmmm...

    Has this been explained to any of you who are going to the FFC's? (Or from any other Dr's?)

    Thanks!

    Blessings & Hugs,
    Annie

  5. Wasabi

    Wasabi New Member

    According to my FM/CFS specialist who treats for chronic infections as part of his protocol, most people have indeed been exposed to the same viruses and bacteria that we FM/CFS sufferers test positive to. Since most of the blood tests show exposure, not infection, by these things, many healthy people would also test positive for these viruses and bacteria.

    The critical difference is that, for whatever reason (i.e., weak immune system), some people are unable to fight off these viruses and bacteria. Consequently, these become chronic infections that continue to tax the body. It's not necessarily that we have a higher incidence of exposure of these infections, but rather that we have a higher incidence of being unable to fight them off before they become chronic, if that makes sense.

    For example, the bacteria Chlamydia Pneumoniae is what causes bronchitis, and many healthy people have been exposed to this bacteria and have been infected with it as an *acute* infection at some time or another. However, in many FM/CFS cases, this bacteria is not killed off at the acute stage, and it continues to develop from the acute stage and cycles continuously through three other stages of existence, including a cryptic stage.

    In the cryptic stage, it is harbored in your white blood cells, causing them to be unhealthy. This contributes to the vicious cycle of immune system weakness, which may include perpetuating hormonal imbalances and sympathetic nervous system imbalances.

    What the FFC and other specialists who treat for these infections are doing is to break the vicious cycle that aggravates CFS/FM symptoms. Chronic infections may or may not be the root cause, but they can certainly make it difficult for the body to heal or deal with any other issues, because it is so overtaxed by dealing with these chronic infections.

    The reason why testing at places like the FFC is important is because many, many FM/CFS patients exhibit symptoms of chronic infections. Treatment of these infections usually results in improvement. It is certainly a likely option to test for, because according to my specialist, the large majority of his patients respond to treatment for chronic infections. Conversely, leaving them untreated would mean that they would likely not make great improvement.

    Anyway, I hope this all makes some sense. I strongly advocate testing and treating for chronic infections, because I believe it's often one of the key underlying issues in our illnesses.
  6. CAAnnieB

    CAAnnieB New Member

    Wasabi,

    Thanks for the explanation. I'm reading & rereading your post!(Takes awhile to sink in) So,....All people would test positive for these infections. What makes us different is that we have some chronic infections which are taxing the immune system, etc...The pneumonia infection going through stages is what some refer to as stealth infections? (Hanging out in/on White Blood cells)

    How do they determine which chronic infections are the most important to treat? And does the testing actually diferentiate between a chronic infectious state and a past acute infection?

    When you say that, "many, many FM/CFS patients exhibit symptoms of chronic infections."....What are those symptoms? Do you think we ALL have chronic infections which if left untreated will hinder our improvement?

    All the latest research talks about FM being a Central Nervous System disorder. Do you think our Nervous Systems have been attacked by viruses or bacteria? Is that the cause of the disfunction?

    I know, ...I have WAY too many questions! Sorry, but I wanted to throw these questions out for discussion because I know there are some very knowledgeable folks here...These questions certainly wouldn't be answered by MY Dr's! (I love them, but they aren't up on this testing/ treating chronic infections aspect.)

    Hugs,
    Annie
  7. ldbgcoleman

    ldbgcoleman New Member

    I believe some of the testing does show if the virus or bacterial is active. My EBV test showed 16 times higher that normal. All I know is I am treating these things and I am getting a whole lot better so thats the bottom line for me. Lynn
  8. CAAnnieB

    CAAnnieB New Member

    SO,ooooo glad that you are improving with treatment! Do they retest you every so often to see if your lab values change? What type of treatment are you on for EBV? Thanks.

    Also...Are you being treated for more than one infection at the same time, or do they specifically treat one at a time & then retest, then move on to the next one?

    What FM symptoms have improved for you?

    Sorry for all the questions, but I'm very interested in all this...I hope that you continue to have MAJOR improvement! Have you been able to reduce prior supplements/ medications?

    Thanks bunches,
    Annie

  9. Wasabi

    Wasabi New Member

    Annie and others,

    I had to dig out some of the handouts my doctor gave me at the beginning of my treatment.

    My doctor's protocol for treating chronic infections is similar to that of Dr. Charles Stratton of Vanderbilt University. Dr. Stratton has published articles on Chlamydia Pneumoniae in the Antimicrobics and Infectious Diseases Newsletter.

    The articles I have copies of are from 2000, and my doctor continues to revise his protocol as new information comes out from Dr. Stratton's research.

    First, to clarify a couple of points:

    I don't think that we *all* have bacterial or viral infections, but I think it's possible that many of us do. My personal opinion is that there are several types of FM/CFS with different causes, including toxic exposure, physical trauma, emotional stress, and chronic infection. Most of us probably have multiple causes.

    In my discussion of chronic infections, I'm going to focus on Chlamydia Pneumoniae, because that's what I have most of my information on.

    Chlamydia pneumoniae is a type of bacteria, but it's an unusual one in that it's also a parasite. That means that it they grow, feed on, and are hosted in the cells of those infected with it. Since it attacks at the cell level, it can wreak havoc in the endocrin system, hormonal balances, sympathetic and central nervous system.

    This germ has called the "heart attack germ." (There was a Time Magazine article on it, and you can read about it at www.heartattackgerm.com.)

    It has also been implicated in a number of other illnesses. These are a few discussed in Dr. Stratton's papers: chronic lung disease, chronic sinusitis, asthma, neurological diseases (including Ahzheimer's and M.S.), rheumatological illnesses (including Rheumatoid Arthritis and Lupus), cancer (in cases where the infection predisposes a person to malignant growth), and chronic diseases (including CFS and FM).

    Some of the symptoms exhibited in patients with Chlamydia Pneumoniae infection in Dr. Stratton's studies include chronic fatigue, lethargy, unrefreshing sleep, brain fog, cognitive disfunction, muscle pain, and joint pain.

    While antibody tests may show exposure to infection, something like 70% of people have been exposed to this germ. Furthermore, the tests aren't highly accurate--one could have false negatives or false positives.

    If a patient shows signs of having chronic infections, Dr. Stratton's (and my doctor's) strategy is to try antibiotic and supplement treatment, and if the patient responds (most do), it implies that that the patient is likely suffering from chronic infections.

    Dr. Stratton's protocol includes long-term antibiotics and supplements. Previously, he prescribed Amoxicillin, Zithromax or Doxycycline, Rifampin, and Flagyl for antibiotics. Recently, he revised the protocol to: Amoxicillin, INH, and Flagyl.

    The INH replaces Doxy and Rifampin. It's a drug that recently received a patent and is typically used to treat tuberculosis. It has been shown to effectively kill Chlamydia Pneumoniae, whereas previously, it was thought that it was only possible to send the infection into permanent remission. Now, they think it's possible to completely eradicate it.

    Anyway, this Chlamydia Pneumoniae infection messes with a variety of functions. For example, it was shown that chronic infection with this bacteria inhibits metabolism of B-12,which would explain why so many CFS/FM patients are either B-12 deficient or respond positively to B-12 supplementation.

    A fairly complete list of Dr. Stratton's protocol for this infection is:

    Long-term antibiotics (as described above)
    High-carb, high fiber diet
    High-fluid diet
    Avoid sugar, milk products and red meat
    Supplements: (See my bio for list of what I'm taking)
    Activated Charcoal (to bind toxins as released from body)

    ****

    Although I've only discussed Chlamydia Pneumoniae here, I think that this protocol is helpful for other bacterial infections also. For example, the antibiotic portion of this protocol is pretty much a typical Lyme Disease protocol. Viral infections would need to be treated with antivirals.

    Again, I don't think that all of us have chronic infections. However, I would definitely look into it as a possible *treatable* cause. My doctor's FM/CFS patients who are diagnosed with and treated for chronic infections go through about a year of intense treatment, and at the end, they are "back to normal"--off of painkillers, sleeping aids, anti-depressants and living active healthy lives. I've been on the program since May 2005, and I'm seeing significant improvement myself.

    If a FM/CFS person has either a severely impaired immune system or a hypervigilant immune system, I believe (from what I've read ) that he/she is likely to have a chronic infection. Usually the impaired immune system leads to a hypervigilant immune system. The immune system is reacting to foreign toxins.

    In the early stages of infection (when the person is unable to fight it off), it will be fairly debilitated. As the infection develops into a cryptic stage of existence, it is no longer acute, but it is still really taxing on the body. Essentially, your body is constantly fighting the infection and is always hypervigilant. This means your immune system is not able to rest and recuperate.

    In a healthy body, it moves back and forth between hypervigilance, attack, and rest. When the immune system cannot rest, the taxation on the body will wear it down.

    What really astounded me when I read Dr. Stratton's papers was the fact that infections were implicated in diseases such as Ahlzheimer's and M.S. In fact, he says that in his research, he discovered that Chlamydia Pneumoniae infection was alive and active in the portions of the brain that showed neuropathy in an Alzheimer's Disease patient! M.S. patients had Chlamydia Pneumoniae in the spinal fluid and responded with significant improvement when put on an antibiotic treatment.

    In studies on animals, it was shown to cause joint swelling similar to rheumatoid arthritis. Infection with this particular germ significantly increased the occurrence of lung cancer and heart attack.

    In summary, chronic infections are incredibly damaging with wide-spread effects. If there is a possibility that we FM/CFS patients have such infections, I think we owe it to ourselves to explore it as a treatable component (or even cause) of our illness.

    Anyway, sorry this is soooo long. I just wanted to try and give a somewhat complete picture of what I understand about chronic infections.

    As I said in my previous post, I'm a believer in treating these chronic infections if one has them, because it opens the door to the possibility of healing. Access to information is always a good thing, because it gives one options as far as pursuing treatment.

    I wish you all the best!
    [This Message was Edited on 10/25/2005]
  10. CAAnnieB

    CAAnnieB New Member

    Hi Wasabi!

    Wow! Thanks for sharing so much information. I really appreciate you taking the time to reply. Hopefully we can all learn more about the underlying causes of our DD's and find effective treatments...SOON would be nice!

    Blessings,
    Annie
  11. elsa

    elsa New Member


    It's past my bedtime, so I'll try to make this coherent and brief.

    My virus is Epstein Barr Virus ... now just about 95% of the population will show antibodies to EBV and not be sick with CFS. When the test where done on me one of the responses show I had too high to record number EBV .. literally ... It showed my numbers like this EBV > 7 .

    There are other tests for this virus, and I had positive responses to it, however the first one noted will not show that way for someone who only has exposure and anti-bodies to EBV. Their numbers are registerable and much lower then mine were.

    I hope this helps some. So many of these pathogens are very common in the average person walking down the street. It is the amount that makes the difference .. or at least gets the ball rolling for more extensive / sensitive testing.

    Elsa
    PS ... When you combine my numbers with an overtaxed immune system, you get the "Flu" like symptoms of CFS that we all love. The fact that this can raise it's ugly head and numbers again in the future makes this an illness of remission ... but not cure (yet). Virus don't go away .. they hit snooze ... Then something comes along and reactivates, but we don't have the proper immune response or the HPA axis or the sleep cycle .... to make them dormant again .... without treatment.

    Anti-viral rx ... valtrex, famvir and Transfer Factor, whey protein, and colostrum have my EBV numbers back in snooze land. Will need to work hard to keep them there or work fast to treatment if the do reactivate again in the future.

    I'm bleary eyed so I have no idea if this made sense! It sounded brillant in my head though! ..... Night All! E.[This Message was Edited on 10/25/2005]
  12. june-bug

    june-bug New Member

    Bravo for all of those questions, Annie!! Its like you read my mind and asked everything I wanted to know but was too FOGGED up to have my brain send them to my fingertips on the key board!! I have an appt for the FFC in Salt lake city in December. Im anxious to see what the testing will show. ANYWAYS thanks for such an informative thread!!! Good night all. June Bug
  13. sues1

    sues1 New Member

    To CAAnnieB

    THANKS for posting this. It makes so much sense. I felt bits and pieces in my own thinking, but did not have anything to base it on. Nor understood it all together.
    But if seems to fit me.

    I JUST made a copy of these postings to take to my Dr. today.
    I already had printed out the Methyl B-12 postings.

    Everyone posting did a great service.

    I am tired so please forgive my ramblings. BLESSINGS.
  14. shep

    shep New Member

    This article has made more sense to me and has been more helpful to me than any article I have read in a long time. Thank you for taking the time to give me all this info on infections. I have had sinus infections for years. I have tried to live with FM and CFS for twenty years. With the help of the Lord, I believe and trust we will find a cure.

    God Bless
    Shep
    Cathy Baines,
    Tennessee
  15. ldbgcoleman

    ldbgcoleman New Member

    I will list what was found and what I am taking and if I have been retested for it. I can give you numbers but I am too lazy to dig out the files and look it up!

    Free t3- taking compounded thyroid medication. retested and is normal now so I am staying on the same dose.

    Hypercoagulation- Heperin and lumbrokinase. This one was very high. I was retested and had signifigant improvement but still out of normal range. I will continue the treatment until I am off anti biotics at least

    Adrenal fatigue- Tried Licorice drops but was retested and it showed no improvement so I started cortisol

    Low NK cell activity- NK Stem and Transfer factor 400. retested and some improvement still not in normal range

    Mycoplasma and EBV- I am taking Famvir and Doxycyclene. Have not been retested. Will continur treatment until JAn 1 and then reassess.

    Candida- Candida diet, Jarro dophilus, Nystatin, Garlic. All IBS symptoms are gone. I am eating all foods but very limited wheat and yeast and no sugar now. Was strict on the diet for 34 weeks.

    I am also taking- End Fatigue vitimin drink, Omega 3 fish oil, Miyake Mushroom, Fibro calm, Ambien

    I also work hard on pacing, stress management and just giving myself a break. I try very hard to maintain a positive attitude and a sense of humor.

    I am sleeping better although not perfect, My fatigue has gotten much better Most days I go all day. I haven't had a day in bed in a long time. I have a few days here and there when I am done by 4 or so. I try to have a quiet rest time every day.

    My pain has greatly diminished. I still have some stiffness and occasional pain but mostly at night. This is easily controlled by Advil. I take it maybe 2 times per week.

    My skin is looking better than ever. My hair is nice and thick. My nails are much stronger. I feel more like my old self. My attitude is more positive and most days I feel very happy.

    It took about 4 months for noticeable changes. My husband first noticed I wasn't complaining about pain as much and I was fixing dinner more often after about 2 months. I felt worse every time I stated something new. But when that was over I would take a little step forward.

    I didn't mean to write a book but you asked!! As always I will answer anything I can! I wish everyone could find a great Dr like I have. It takes a commitment on the patients part as well. I have learned alot about myself and what I am capable of. Lynn
  16. Juloo

    Juloo Member

    Test: EBV Acute Infection Antibodies/EBV Ab VCA, IgM = 6
    Negative <20
    Positive >19
    ___________

    Test: EBV Early Antigen Ab, IgG = Positive Abnormal
    "Positive results suggest recent or chronic-active infection. Anti-EA becomes undetectable weeks to months after onset." In this case, negative = normal.
    __________

    Test: EBV Ab VCA, IgG = >170 (High)
    Negative <20
    Positive >19
    __________

    Test: EBV Nuclear Antigen Ab, IgG = 91 (High)
    Negative <20
    Positive >19
    __________

    Interpretation:

    SUSCEPTIBLE if all 4 tests are negative

    ACUTE INFECTION if VCA IgM+, EA IgG + or -, VCA IgG +, Na-ABS -

    CONVALESCENT PHASE if VCA IgM + or -, EA IgG + or -, VCA IgG +, NA-ABS +

    CHRONIC OR REACTIVATED INFECTION if VCA IgM -, EA IgG +, VCA IgG +, NA-ABS + or -

    OLD INFECTION if VCA IgM -, EA IgG -, VCA IgG + or -, NA-ABS +

    NOTE: + means positive or antibody present, - means negative or antibody absent.

    This information is from the test results from LabCorp.

    I hope I copied everything correctly!
  17. CAAnnieB

    CAAnnieB New Member

    WOW!!! Thank you SO much for sharing the things you are being tested/ treated for & how you are being treated! I REALLY appreciate you taking the time & effort to reply.

    Are you working with a private Dr? Or are you going to a FFC? You are so blessed to have such a knowledgeable Dr!

    I am assuming that these tests & treatments are not covered by your health insurance? I bet it is very expensive...I sure wish there was a more affordable way for all of us to receive this level of health care for our FM & CFIDS...

    I applaud you for sticking with the diet & treatments! I am very happy for you that you have seen/ felt so much improvement. It is wonderful to hear of people who have had such success.

    Like you, I too have made major lifestyle changes to cope with my FM. Pacing, relaxation exercising, stress managing, etc,etc. Those things are all important for managing our symptoms. A positive attitude & humor are difficult to find sometimes in the midst of these DD's, but can certainly help a great deal!

    I'm sure others are as appreciative as I am for you taking the time to post the specifics of your treatment. Thanks bunches, Lynn!

    Blessings,
    Annie
  18. CAAnnieB

    CAAnnieB New Member

    Wow again! We must have been posting around the same time because I didn't see your latest post until later! Thank you also for the detailed info!

    This is all very interesting...I am going to see if I can get one of my Dr's to test for some of these infections. The bummer part is that my $ is very limited (I'm on Disability) and I simply can't afford expensive testing & treatments if they aren't covered by my insurance. ): I already spend WAY too much of my measly check on supplements!

    Once again, thanks to all of you who have posted. I am now understanding these infections & their roles in our DD's better...Thank you for answering my many questions! You are terrific!

    Blessings,
    Annie
  19. Juloo

    Juloo Member

    If I am not mistaken, insurance covered my tests.