CFS or Lyme

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Apr 26, 2009.

  1. ktp812

    ktp812 New Member

    I am new here and have been reading alot of the posts..I will try and make this somewhat brief so you aren't reading for days.
    I became sick in November 2004. I first had a 24 hour flu with chills, headache, temp of 103, sweats etc. The following morning I woke up and was unable to bend my hands/fingers. They were stiff and sore.
    I went to the doctor who did a blood test and it came up with high sed rate, high crp, high monocytes, high liver enzymes.
    He said it was some type of viral attack and that I would be fine.
    3 weeks later the fatigue hit me. It was as though I hadn't slept in years. Nothing like anything I had ever felt.

    I was diagnosed with CFS 7 months later and told to just do what I could and live with it.
    I was able to continue working part time and exercise but it was very difficult.
    My fatigue was not sleepy or that I needed to sleep or even wanted to sleep. It was more of a total body exhaustion/draining unbelievable feeling. Like the life was being drained out of me everyday. I had to lay down cause I had no choice.

    Fast forward to Sept 2006 when I was diagnosed with Lyme and put on abx. I have been on more than 10 different ones including IV. I did have a remission for 4 months but slowly the exhaustion/fatigue came back and now I am very bad off.

    So my doctor has put me on Valcyte in thinking this was a viral attack to begin with.
    I am not sure what to think at this point. My only symptom is the constant draining exhaustion every day. I am only working now one day a week and can only walk not run anymore.

    I have no pain-headaches-muscle pain-nothing just the fatigue. I am not really sure what is wrong with me. I am on thyroid meds and adrenal meds too. It has been almost 5 years and I think the doc still isn't sure what is wrong with me.

    I was a healthy active runner and became sick overnight. Does this seem like CFS. I was tested for Lyme and had and IND test and tested for at least 15 other bacteria and virus. All were negative.

    I am sorry this is so long...I am not sure I want to be taking such a powerful medication as Valcyte if I don't have anything it could help. Any thoughts would be appreciated.

    Some of my other symptoms were sweats, stiff hands for 10 months, dry eyes and eye pain, when you touch my skin it turns bright red, no appetite, muscle twitching (calf only), and of course the unrelenting fatigue which is different everyday. I know there are other symptoms but after so long I can't think of them at the moment.

  2. Nanie46

    Nanie46 Moderator

    Hi Kim,

    I also have lyme (was "fibromyalgia" for 21 years). Your symptoms sound like lyme or very possibly another tick-borne coinfection that may be undiagnosed/untreated.

    Were you treated by an ILADS trained LLMD? Were you properly evaluated for tick borne coinfections like bartonella, babesia, HGE and HME?

    It is important to remember this.....CFS (and FMS) are syndromes.....sets of symptoms gven a name because Dr's didn't know what else it other words they didn't know the cause and therefore couldn't treat the you get a label of an illness with "no known cause".

    It only makes sense that everything has a cause! They just don't want to take the time, effort and expense to look for it so you can get thousands of people have a diagnosis like CFS or FMS for life and will never get well.

    In other words, your CFS has a cause....and chronic infection is the likely cause ofyour CFS.

    You just need a Dr who is skilled enough to find it and treat it.

    If I were you I would go to on flash discussion....sign up for free like you did here.......go to the Medical Questions a new topic with all your will get many intelligent responses form experienced people. It is a very active board.

    The fact that you had a short remission on antibiotics says that you were getting better....but needed more treatment. Not all LLMD's are the same.

    You can also post on on the Seeking a Dr board to find a good LLMD in your state.

    You can post for me here on the lyme board or find me on as Dekrator48.

    Hope to talk to you again.

    take care!
  3. Forebearance

    Forebearance Member

    Hi Kim,

    Welcome to the board! I'm sure some of our Lyme experts and Valcyte experts will come along and help you with your questions.

    One thing I can think of as a non-expert is: have you ever taken anything to draw out the biotoxins that the Lyme bacteria make? They tend to be stored in fat. So if you have gained weight while you've been sick, it is possible that you might have a bunch of stored toxins to get rid of.

    Although some people with stored toxins don't gain weight. Those people tend to have problems with their digestive systems.

    Even if you have killed the Lyme bacteria, the toxins can still be hanging around and causing problems.

    I was told something similar to you when I first got sick. I worked as long as I could. In hindsight I wish that I had seriously rested from the very beginning. I think it might have helped me recover more quickly.

    There is one other thing that might be a slight possibility as a contributing factor to your illness. That is exposure to toxic mold. It produces biotoxins that have a similar effect to Lyme biotoxins. I read a book called "Mold Warriors" by Dr. Ritchie Shoemaker that explained all about mold illness. It convinced me that mold toxins were a big cause of my case of CFS.

    Oh yeah, you might also be interested in Rich Van K's simplified methylation protocol. Maybe you need one more little piece of the puzzle in order to get all the way well. You can find posts about it on this board.

  4. ladybugmandy

    ladybugmandy Member

    you may have both lyme and virus.

    may i ask if you have had the antibody tests for EBV, HHV6, and CMV?

    also, you may consider getting an RNase L test ( for more clues as to whether you have a virus.

    best of luck
  5. ktp812

    ktp812 New Member

    I am just so confused by all of this. My doc says it was infectious but that could mean viral as well. Since there are really not good treatments for this then how can someone get well?
    I have been tested for co-infections and had a slightly elevated titer for Bartonella.

    I have been treated for that last year. I guess I don't understand why all of the sudden he would label me with CFS when I have no other symptoms. I am totally unsure if I should stay on the valcyte or go back to the abx and treat the Lyme.

    I have been seeing a LLMD in New York who is the one who tested me for all the virus's and other bacterial illnesses. He seemed to think I have Lyme but then again it is a clinical diagnosis if you don't have a rash or positive test. I did get well on abx but then since I relapsed I was thinking maybe I was going to get better anyway. I went back on the IV that brought me to the point of feeling about 80 percent and it did nothing the second time around. So then it makes me wonder if it was the abx at all. I have been in treatment for over 2 years with little success.

    I think working and exercising (running) when I first became sick is what caused my adrenal insufficiency. I pushed for 2 years thinking it would help me get better but in the long run it was a huge mistake for my doctor to tell me to do as much as I could.

    I have thought about mold exposure but since I became ill overnight with some type of attack I am not sure that is a factor. Although I am going to bring it up with my doctor at the next visit. Any and all suggestions is welcome..I am totally lost.

    I myself feel this was some type of infection that may still be here or gone and my immune system continues to be haywire and continue to battle. I can't think of any other reason why I have such low energy, fatigue and sometimes total exhaustion.
    The pattern seems very much like CFS fatigue but in the absence of any other symptoms I just don't know.
    Thank you for the replies and I am going to keep reading the older posts and gather some more information.

    I have been tested for all those virus's but not the RNase L test. I will write that one down.

    [This Message was Edited on 04/27/2009]
  6. Dlebbole

    Dlebbole New Member

    It makes it so easy to read your post - I apprectiate it! There are some I can't read because of this.
  7. munch1958

    munch1958 Member

    The outer surface protein A or OSP A of the Lyme spirochete is a Pam-3-Cys. The means that your immune system can no longer fight latent fungal, viral and bacterial infections. Many LLMDs are treating patients with AVs, AFs and Abx.

    If you compare the disease model of the syphilis spirochete to the Lyme spirochete you will find many scary things.
  8. Nanie46

    Nanie46 Moderator

    Hi again Kim,

    I understand your confusion and frustration. It is important to remember that testing, especially for lyme and tick borne coinfections is not foolproof by any means.

    Just because you only tested positive for the coinfection bartonella, does not mean you couldn't have another coinfection.

    A really good LLMD treats based on symptoms, not just on lab results.

    If it were me, I would find a new LLMD who comes highly recommended and get a fresh opinion.
  9. richvank

    richvank New Member

    Hi, Kim.

    I think it's very possible that you have a partial methylation cycle block and glutathione depletion. If so, there's an inexpensive treatment for it, called the simplified treatment approach. I recommend getting tested with the Vitamin Diagnostics methylation pathways panel, and if these abnormalities show up, I suggest that together with your doctor, you consider this treatment. This has been discussed a great deal on this board over the past 2+ years, and you can find more information in the archives.

    Here's contact information for getting the test panel:

    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.

    Available from:

    Vitamin Diagnostics, Inc.
    Rt. 35 & Industrial Drive
    Cliffwood Beach, NJ 07735
    Phone:+1 (732) 583-7773
    Fax: +1 (732) 583-7774)

    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone, or you can make use of the following comments on interpretation:

    Several people have asked for help in interpreting the results of
    their Vitamin Diagnostics, Inc., methylation pathway panels. Here are my
    suggestions for doing so. They are based on my study of the
    biochemistry involved, on my own experience with interpreting more
    than 120 of these panel results to date, and on discussion of some of
    the issues with Tapan Audhya, Ph.D., who is the director of the
    Vitamin Diagnostics lab.

    The panel consists of measurement of two forms of glutathione
    (reduced and oxidized), adenosine, S-adenosylmethionine (SAM) , S-
    adenosylhomocysteine (SAH), and seven folic acid derivatives or

    According to Dr. Audhya, the reference ranges for each of these
    metabolites was derived from measurements on at least 120 healthy
    male and female volunteer medical students from ages 20 to 40, non-
    smoking, and with no known chronic diseases. The reference ranges
    extend to plus and minus two standard deviations from the mean of
    these measurements.

    Glutathione: This is a measurement of the concentration of the
    reduced (active) form of glutathione (abbreviated GSH) in the blood
    plasma. From what I've seen, most people with chronic fatigue
    syndrome (PWCs) have values below the reference range. This means
    that they are suffering from glutathione depletion. As they undergo
    the simplified treatment approach to lift the methylation cycle
    block, this value usually rises into the normal range over a period
    of months. I believe that this is very important, because if
    glutathione is low, vitamin B12 is likely unprotected and reacts with toxins
    that build up in the absence of sufficient glutathione to take them
    out. Vitamin B12 is thus “hijacked,” and not enough of it is able to
    convert to methylcobalamin, which is what the methylation cycle needs
    in order to function normally. Also, many of the abnormalities and
    symptoms in CFS can be traced to glutathione depletion.

    Glutathione (oxidized): This is a measurement of the concentration
    of the oxidized form of glutathione (abbreviated GSSG) in the blood
    plasma. In many (but not all) PWCs, it is elevated above the normal
    range, and this represents oxidative stress.

    Adenosine: This is a measure of the concentration of adenosine in the
    blood plasma. Adenosine is a product of the reaction that converts
    SAH to homocysteine. In some PWCs it is high, in some it is low, and
    in some it is in the reference range. I don't yet understand what
    controls the adenosine level, and I suspect there is more than one
    factor involved. In most PWCs who started with abnormal values, the
    adenosine level appears to be moving into the reference range with
    methylation cycle treatment, but more data are needed.

    S-adenosymethionine (RBC) (SAM): This is a measure of the
    concentration of SAM in the red blood cells. Most PWCs have values
    below the reference range, and treatment raises the value. S-
    adenosylmethionine is the main supplier of methyl groups in the body,
    and many biochemical reactions depend on it for their methyl
    groups. A low value for SAM represents low methylation capacity, and
    in CFS, it appears to result from a partial block at the enzyme methionine
    synthase. Many of the abnormalities in CFS can be tied to lack of
    sufficient methyation capacity.

    S-adenosylhomocysteine (RBC) (SAH): This is a measure of the
    concentration of SAH in the red blood cells. In CFS, its value
    ranges from below the reference range, to within the reference range,
    to above the reference range. Values appear to be converging toward
    the reference range with treatment. SAH is the product of reactions
    in which SAM donates methyl groups to other molecules.

    Sum of SAM and SAH: When the sum of SAM and SAH is below 268
    micromoles per deciliter, it appears to suggest the presence of
    upregulating polymorphisms in the cystathione beta synthase (CBS)
    enzyme, though this may not be true in every case.

    Ratio of SAM to SAH: A ratio less than about 4.5 also represents low
    methylation capacity. Both the concentration of SAM and the ratio of
    concentrations of SAM to SAH are important in determining the
    methylation capacity.

    5-CH3-THF: This is a measure of the concentration of 5-methyl
    tetrahydrofolate in the blood plasma. It is normally the most
    abundant form of folate in the blood plasma. It is the form that
    serves as a reactant for the enzyme methionine synthase, and is thus
    the most important form for the methylation cycle. Many PWCs have a
    low value, consistent with a partial block in the methylation cycle.
    The simplified treatment approach includes FolaPro, which is
    commercially produced 5-CH3-THF, so that when this treatment is used,
    this value rises in nearly every PWC. If the concentration of 5-CH3-
    THF is within the reference range, but either SAM or the ratio of SAM
    to SAH is below the reference values, it suggests that there is a
    partial methylation cycle block and that it is caused by
    inavailability of sufficient bioactive B12, rather than
    inavailability of sufficient folate. I have seen this frequently,
    and I think it demonstrates that the “hijacking” of B12 is the root
    cause of most cases of partial methylation cycle block. Usually
    glutathione is low in these cases, which is consistent with lack of
    protection for B12, as well as with toxin buildup.

    10-Formyl-THF: This is a measure of the concentration of 10-formyl
    tetrahydrofolate in the blood plasma. It is usually on the low side in PWCs.
    This form of folate is involved in reactions to form purines, which
    form part of RNA and DNA as well as ATP.

    5-Formyl-THF: This is a measure of the concentration of 5-formyl
    tetrahydrofolate (also called folinic acid) in the blood plasma.
    Most but not all PWCs have a value on the low side. This form is not used
    directly as a substrate in one-carbon transfer reactions, but it can
    be converted into other forms of folate. It is one of the
    supplements in the simplified treatment approach, which helps to
    build up various other forms of folate.

    THF: This is a measure of the concentration of tetrahydrofolate in
    the blood plasma. In PWCs it is lower than the mean normal value of 3.7
    nanomoles per liter in most but not all PWCs. This is the
    fundamental chemically reduced form of folate from which several
    other reduced folate forms are made. The supplement folic acid is
    converted into THF by two sequential reactions catalyzed by
    dihydrofolate reductase (DHFR). THF is also a product of the
    reaction of the methionine synthase enzyme, and it is a reactant in
    the reaction that converts formiminoglutamate (figlu) into
    glutamate. If figlu is high in the Genova Diagnostics Metabolic
    Analysis Profile, it indicates that THF is low.

    Folic acid: This is a measure of the concentration of folic acid in
    the blood plasma. Low values suggest folic acid deficiency in the
    current diet. High values are sometimes associated with inability to
    convert folic acid into other forms of folate, such as because of
    polymorphisms in the DHFR enzyme. They may also be due to high
    supplementation of folic acid.

    Folinic acid (WB): This is a measure of the concentration of folinic
    acid in the whole blood. See comments on 5-formyl-THF above. It
    usually tracks with the plasma 5-formyl-THF concentration.

    Folic acid (RBC): This is a measure of the concentration of folic
    acid in the red blood cells. The red blood cells import folic acid
    when they are initially being formed, but during most of their
    approximately four-month life, they do not normally import, export, or use
    it. They simply serve as reservoirs for it, giving it up when they
    are broken down. Many PWCs have low values. This can be
    caused by a low folic acid status in the diet over the previous few
    months, since the population of RBCs at any time has ages ranging
    from zero to about four months. However, in CFS it can also be
    caused by damage to the cell membranes, which allows folic acid to
    leak out of the cells. Dr. Audhya reports that treatment with omega-
    3 fatty acids can raise this value over time.

    Rich Van Konynenburg, Ph.D.
    Independent Researcher and Consultant
  10. ktp812

    ktp812 New Member

    Wow..thank you everyone for all the replies. I actually printed out the Methylation post so I could re-read it again and bring it to my doctor. I am willing to test for anything..I just had some blood (8tubes) sent to NC for some type of metabolism test I think. No results yet.

    I am use to spacing my posts out from being on the Lyme board. It makes it much easier for everyone to read.

    I am seeing a very well known LLMD in Hyde Park NY so I am not sure if I can do any better than that. True I still have something going on but I am not sure I could find anyone more knowledgeable.

    He has tested me for so many things but obviously something is missing to this whole thing.

    Just to say again I had been on over 2 years of continuous various abx including Bicillin injections and IV abx. I would count at least 12 orals.

    I guess that is why my doc has decided to go the viral route. Personally I have no clue what happened to me in 2004 but I went from being a healthy active person to battling chronic fatigue/exhaustion and a bunch of other strange symptoms.

    I did take glutathione by IV last Feb 2008 for a few weeks and felt no difference. My doc here recomended it. Maybe I didn't do it long enough but he said I would have noticed something almost immediately.

    Thanks again to everyone on this guys have been very helpful and I will continue to read all the information available here.

    I don't believe I have been on any AF before but will read up on those links..Thank you
    [This Message was Edited on 04/28/2009]
  11. munch1958

    munch1958 Member

    My LLMD has everyone taking either Nystatin or Diflucan (mostly both) while on Abx. Check out the P450 pathway article here in the library. My doc thinks the Borrelia bug cohabs with the candida bug in the same cell. Killing one can help kill off the other.
  12. Catseye

    Catseye Member

    I think you should take a look at and quit believing your medical doctors who just don't have a clue about chronic diseases. Telling you to do what you could and live with it is the height or arrogance and ignorance. They don't even suggest looking elsewhere. Medical doctors make it sound like if they don't have a cure, then neither does the rest of the world. NOT TRUE!!! If it was, I'd still be in bed, incapacitated and helpless!

    Killing off lyme is not going to fix your immune system if you are this bad off. And Rich is right about the methylation block in the liver. I have fixed my gut/immune system and the methylation block, so it certainly CAN be done, but just not by traditional medical doctors because they don't know how. Look at that site I mentioned and try to find a real health expert, as opposed to a medical doctor. They are effectively in treating a crisis, but not chronic diseases. Your intestines are probably in a state of dysbiosis (which they can't treat effectively even if they believe in it) and this is affecting the way you digest your food which is resulting in numerous nutritional deficiencies (nevermind the doctor's tests about these deficiencies because their tests are almost completely useless) and how the liver functions.
  13. jasminetee

    jasminetee Member

    The way you describe your onset of symptoms and ongoing symptoms does not sound like typical ME/CFS to me. I think Lyme might be the culprit or something else.

    I know it's a drag not to know what is wrong. I hope you can find someone that can help you get the right diagnosis.