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What is a High Sedimentation Rate for Someone with CFS?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Mya Symons, May 1, 2012.

  1. Mya Symons

    Mya Symons Mya Symons

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    Does anybody know what a high sedimentation rate is for a person with CFS? It is my understanding that the normal sed rate for someone with CFS is very low. My sed rate is a little high at 39. It is supposed to be no higher than 20 (this is normal for the average woman). But, if the normal sed rate for someone with CFS is very low, does this mean my sedimentation rate is really high?

    They think the inflammation is from somewhere in my intestines. It is probably more Sigmoid Colon issues, so back to the gastroenterologist for another colonoscopy. Yea!:(
  2. Hope123

    Hope123 Senior Member

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    I've heard the same thing about the sed rate being low for CFS but would like to see/ know about the original paper/ report/ statement establishing that if it is indeed the case. Ideas get tossed around the Internet sometimes that aren't grounded in evidence so I like to know if there is something backing this other than someone saying so.

    My sed rate is higher than yours Mya. Since it is a sign of non-specific inflammation and I feel like I have the flu all the time, I am not surprised mine is high. Lenny Jason and others have pointed out that there one way to subdivide CFS may be between those with evidence of inflammation/ infection and those without. And this is echoed in the recent paper by M. Maes and Cort Johnson that there is a group of Fukuda CFS with less inflammation and a group that has more inflammation.

    Anyone with a higher than normal sed rate (and the "normal" range can go up with age) should get checked out for infections/ rheumatologic/ cancer reasons for the higher rate but at the same time, a diagnosis of CFS is allowed if one has an abnormal ESR but that ESR isn't explained for by any other condition. This is true whether you are diagnosed by Fukuda, Canadian, or ICC. They all have this exception for unexplained lab results.
  3. Mya Symons

    Mya Symons Mya Symons

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    Thanks for the information. I agree. There is so much different info out there on CFS it is hard to determine what is correct.

    The doctor did a CBC and he said it did not look like an infection; thus, he is not going to check for one. Also, I was checked out for rheumatological issues 10 years ago and nothing came up. I don't think a colonoscopy will give me any answers, however. They know I have swelling, but they can't figure out why.

    I went to "google academy" and it seems that most of my symptoms and my husband's symptoms resemble an HTLV infection. My husband now has a paralyzed bladder and my lower intestines don't seem to be moving at all. We both have back pain and a lot of involuntary twitching and jerking. Sometimes we have problems with walking. My son has similar symptoms only when he is ill with something else like seasonal flu. We all have arthritis, even my 17 year old son. Whatever it is, I am convinced it is neurological and contagious. I ordered an HTLV test today.
  4. Sparrow

    Sparrow Senior Member

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    Hope - My ESR was 6, with a reference range of 0-12 (so probably measured in different units than yours). I had heard they're usually low as well, though I guess mine came out to perfectly average. I certainly feel inflamed, and definitely have the markers of pervasive infection, so I don't think that's directly linked to a high ESR with us. I feel like I have the flu all the time too, and am very ill.

    Mya - I've also heard it's not uncommon to have other co-morbid conditions that would raise your ESR, though. Maybe there is something extra going on with you. Or maybe it's just another of those places where different people have abnormalities that show up in different places. Wouldn't be the first time...

    I'm interested to see what others' ESR's were. I've actually wondered weather mine was higher than usual for ME patients.
  5. Overstressed

    Overstressed Senior Member

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    Hi Sparrow, when I was healthy or, at least when I 'felt' healthy, my ESR-rate was lower than after I became ill. Here in Belgium, we have two lab figures, one measures sed. rate after 1hr, the other is after 2hrs.

    Healthy:
    sed. rate 1hr: 2 (range 0-21)
    sed. rate 2 hrs: 5(range 0-40)

    After becoming ill:

    sed. rate 1hr: 8
    sed. rate 2 hrs: 20

    Interestingly, when I was on Gc-Maf + selenium + R-alpha lipoic acid, end of 2011, my lab test turned completely normal, i.e. as before I became ill. My sed. rate became 2 and 5 again. Unfortunately, I had to stop selenium...

    Best regards,
    OS.
  6. Overstressed

    Overstressed Senior Member

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    Hi Mya,

    after I got infected, I thought I catched HIV. At that time, I never heard of HTLV, and after numerous negative HIV-tests, I started looking for other causes and so I learned about HTLV. And now, I can say I have 'every' symptom associated with HTLV, though, my serological test remains negative. I had even a very sensitive test done in a research lab by a HTLV- researcher, and even that came back negative. Lately, it is clear that a number of symptoms is typical with retrovirus infections.

    But, I completely believe we have a virus that 'behaves' the way HTLV does.

    Take care,
    OS.
  7. Mya Symons

    Mya Symons Mya Symons

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    It's so frustrating not to have a name for this. I don't wish it is HTLV, but it would be nice to have answers. The sicker we get, the more I do agree that it is some type of virus. It started out feeling so much like I was sick with a horrible flu and the symptoms just keep coming over the years. And the fact that all three of us have similar symptoms. What else could it be?
  8. Overstressed

    Overstressed Senior Member

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    If the cause is not found, symptoms are just what they are...symptoms. What I don't understand is, many symptoms are identical to that of HTLV, that (not all, but a lot)retrovirologists are doing their best to dismiss the theory of a retrovirus. What I do know is, at the Tropical Disease Center in Belgium, they told me 'many people describe the symptoms I have'.

    Yet, the cause is still to be found...but I'm sure it's a retrovirus.

    Best regards,
    OS.
  9. tonydewitt

    tonydewitt

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    Mya,

    Certainly the symptoms that you described sound very much like HTLV, but testing for this can be very frustrating. While the three month antibody test is the gold standard for HIV testing, no window period has been determined for HTLV. The blood banks (foolishly) use 51 days as the HTLV window period, but as Mr. Sadowsky of TheBody site declares, some people never develop HTLV antibodies, so the blood banks are just another part of the medical system's denial of HTLV. A published paper (by real scientists) found that about ten percent of New York blood donors had components of HTLV (proteins called p24 and Tax) in their blood without testing positive for HTLV antibodies. Even if HTLV can't be transmitted by HTLV+ blood transfusions (the claim is that this only happens 40% of the time), having ten percent of the blood donor population have HTLV components is a frightening picture in terms of the size and reach of this disease. I myself have tested negative (135 days post exposure) on both the antibody and the (more sensitive) PCR tests for both HTLV type 1 and 2, yet I have all of the symptoms that your family is experiencing (problems with walking, lower intestines, and arthritis).

    I agree with Overstressed that this is a HTLV like retrovirus, with the added feature that it is not detectable with standard antibody nor PCR testing - this problem puts the medical industry to task to come up with an identifiable retrovirus for what's ailing us, and a reliable test that provides recognition of an infected person, especially with respect to blood supply.

    Best wishes.
  10. tonydewitt

    tonydewitt

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    PS: Since we were discussing related retroviruses, I also wanted to add these comments:

    While Dr. HHH and Dr. Bob and Teak all agree that three month HIV testing is conclusive, all of them refuse to discuss HTLV. And when Dr. Bob (who was HIV positive for 20 years and receiving the best medical care in the world) suddenly died last year (God bless his soul), he died from sepsis, which is a common death for native people with HTLV. I don't have a crystal ball, but between the number of doctors refusing to discuss HTLV, and the number of people dying of HTLV related causes, HTLV is a major problem that is not being dealt with at all.

    Ever notice that two SEPARATE conferences take place for HIV and HTLV, even though the have similar names? One is called Conference on Retrovirology and Opportunistic Infections, and the other is called International Retrovirology Conference. Being the words "Retrovirology" and "Conference" are common between the two, can't they be held together and cooperatively help each other? Is this a case of segregation? HTLV sufferers to the back of the bus?

    Best wishes.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    One source of the idea that CFS patients have a low SED rate may be that many patients have hypercoagulation and that seems to go with a low SED rate. Last time mine was checked it was 2 and I have taken the ISAC panel and did have hypercoagulation.

    I can't speculate on cause and effect here though.

    Sushi
  12. mellster

    mellster Marco

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    I had 2 (0-12) and no hypercoagulation (my sister does have hypercoagulation but not CFS). I don't think that people are trying to deny/suppress HTLV research, it does not make much sense, because if somebody would invent a gold standard test let alone some form of treatment they would become very rich and famous. At this point I do not believe in a retroviral cause for all, but maybe for some, but I acknowledge it must be frustrating to have all these symptoms and get no help/acknowledgement. One symptom I am interest in bc I developed it as well with the onset is muscle twitching (without weakness or coordination issues though) which persisted although it has declined somewhat. I believe the cause for the twitching is to be found in immune system activity and hyper excitability of the nerves due to disturbances of the mineral channels.
  13. tonydewitt

    tonydewitt

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    Mellster,

    Good point - if someone developed a HTLV treatment, that would be a financial boom, and that treatment could be applied to those patients who have HTLV like symptoms in hopes of resolving their suffering.

    But I disagree with you regarding people (especially doctors) denying / suppressing HTLV awareness - that's happened in writing on several medical forums, and also in person. Asking a medical forum (especially ones where real doctors are replying) about HTLV results in a reply (from an actual doctor) taking a hard line against any HTLV discussion or testing. Furthermore, going to an actual doctor in person with all of the symptoms of HTLV will not result in the doctor even mentioning HTLV, never mind testing for it. That's denial of HTLV and that's suppression of HTLV, and I agree that does not make much sense, but that's the reality; this is especially disturbing because doctors have a duty to diagnose and treat their patients, instead of omitting potential diagnoses, which to me is a form of malpractice.

    As for your personal situation, your muscle twitching is most likely a direct result of EBV infection, I had that about twenty years ago, and I wish that was my biggest problem. The best you can do for that is to take homeopathic antivirals (colloidal silver, etc.), but on the bright side, doctors are willing to consider, mention, and test for EBV, instead of the hush treatment that HTLV receives. Richard Engath, who started the HTLV National Registry, was literally asked to leave the doctor's office when he asked to get tested for HTLV. We could debate whether the hush treatment for HTLV is intentional or ignorance, but that's irrelevant because the results are the same - 20 million people are infected with HTLV, including half a million Americans. In a different thread, Aciendaze made an excellent point that with the long latency between HTLV infection and the appearance of symptoms (much longer than HIV's latency), HTLV could become the next big epidemic, especially because routine testing for HTLV is not done. I am glad that you can see the frustration, but I hope you can also see the tidal wave coming that is HTLV.

    Best wishes.
  14. mellster

    mellster Marco

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    Thanks Tony - I agree about the denial, but I am not sure of they are told to act this way or because it is just bc of everything they learned in med school is 20 years old ;) Also thanks for your analysis, EBV was the only really high significant titer for me, so that seems to be spot on (it has come down since) and I have been taking decent stuff like 2LEBV for it and other natural anti-virals. I just didn't know that it was associated with muscle-twitching and I have not found (m)any documents on the web yet talking about EBV and twitching. also interestingly the twitching started before most other symptoms and I dismissed it bc it sometimes happened naturally after kickboxing when overusing the muscles and I only got suspicious after it started happening without previous strenuous activity. Thanks again, if you have any links, even better ;)
  15. tonydewitt

    tonydewitt

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    Mel,

    I'd like to find the responsible party for the HTLV denial, since it's so pervasive - no mention of HTLV, no testing for HTLV, no diagnosis for HTLV, along with the belief that people from endemic countries don't travel to non-endemic countries (like the USA) and spread the disease. North America didn't have HIV until someone flew from Africa to Haiti, and Brazil didn't have HTLV until the Japanese migrated there. Yes, I had to actually tell my doctor that planes transport people to other countries, so the poop is pretty thick on this topic.

    I'm glad my EBV diagnosis was spot on - it is definitely associated with muscle twitching, especially with the most important muscle, the heart. In the old days, EBV infection was called "Soldier's Heart", because of the twitching it caused there. Of course, to get an EBV infection diagnosis, I had to go to ten doctors, including a cardiologist, all of who couldn't figure it out. Finally, Marc Gossin (a brilliant PA in the big apple), figured it out. Yet another example of how multiple doctors can drop the ball.

    Best wishes.
    mellster likes this.
  16. richvank

    richvank Senior Member

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    Hi, all.

    With regard to low sed rate in ME/CFS, this originated with David Berg, who used to be the proprietor of Hemex Labs in Phoenix, AZ. (He sold out to Esoterix, which became part of LabCorp, and they still offer his tests in Phoenix.) Mr. Berg specialized in blood coagulation. He developed the concept of ISAC (Immune System Activation of Coagulation). He found that quite a few CFS patients had lab results that he associated with ISAC. The abstracts of two of his papers are below.

    As I recall, he did not include this in his papers, but in his talks he mentioned that a sed rate below 4 or 5 millimeters per hour is suggestive of ISAC, and he recommended running the ISAC panel in patients who had sed rates this low.
    There was a lot of discussion of this in the CFSFMExperimental group at the time (around 10 or 12 years ago, as I recall). Some PWCs had low sed rates, and some did not.

    For those who had ISAC, Mr. Berg recommended treatment with low-dose heparin, together with an antiviral to prevent overgrowth of viruses when the fibrin deposits were removed from the capillaries. Other people were trying things like nattokinase, serrepeptidase, or lumbrokinase, together with a transfer factor to suppress the viruses, and some people reported benefit from this.


    Best regards,
    Rich

    Blood Coagul Fibrinolysis. 1999 Oct;10(7):435-8.
    Chronic fatigue syndrome and/or fibromyalgia as a variation of antiphospholipid antibody syndrome: an explanatory model and approach to laboratory diagnosis.

    Berg D, Berg LH, Couvaras J, Harrison H.
    Source

    HEMEX Laboratories, Inc., Phoenix, Arizona 85021, USA.
    Abstract

    Chronic Fatigue and/or Fibromyalgia have long been diseases without definition. An explanatory model of coagulation activation has been demonstrated through use of the ISAC panel of five tests, including, Fibrinogen, Prothrombin Fragment 1+2, Thrombin/ AntiThrombin Complexes, Soluble Fibrin Monomer, and Platelet Activation by flow cytometry. These tests show low level coagulation activation from immunoglobulins (Igs) as demonstrated by Anti-B2GPI antibodies, which allows classification of these diseases as a type of antiphospholipid antibody syndrome. The ISAC panel allows testing for diagnosis as well as monitoring for anticoagulation protocols in these patients.
    PMID: 10695770
    Blood Coagul Fibrinolysis. 2000 Oct;11(7):673-8.
    Activation of the coagulation system in Gulf War Illness: a potential pathophysiologic link with chronic fatigue syndrome. A laboratory approach to diagnosis.

    Hannan KL, Berg DE, Baumzweiger W, Harrison HH, Berg LH, Ramirez R, Nichols D.
    Source

    Osceola Hospital, Kissimmee, Orlando, Florida, USA.
    Abstract

    Most symptoms of Gulf War Illness (GWI) are similar to Chronic Fatigue Syndrome (CFS) and/or Fibromyalgia (FM). We investigated whether these symptoms are associated with an activated coagulation system as has been reported in some cases of CFS/FM. The coagulation assays include activation markers of the cascade, platelet activation and hereditary risk factors. Our findings show activation of the coagulation system in GWI. This evidence of a hypercoagulable state suggests that symptoms may be due to poor blood flow and, therefore, a basis for the potential utility of anticoagulant therapy.
    PMID: 11085289
    Xandoff likes this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    At the time I did the ISAC test my doctor was in touch with Dr. Berg and I did the heparin protocol followed by nattokinase--which I still use. I did benefit from the heparin injections--improving a lot for a couple of years.

    Sushi
  18. bigmama2

    bigmama2

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    also note- sed rates do change. one time i had a very high reading - like yours mya- 42 or something. then got retested few weeks later and it came down to normal rate. but mine has never been low low, at least not the few times it was tested.
  19. Daffodil

    Daffodil Senior Member

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    Richard Engnath in NY state has been trying for years to raise awareness of HTLV..he has spoken with many politicians and doctors

    HTLV National Registry
  20. tonydewitt

    tonydewitt

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    Daffodil,

    Thanks for the information on Mr. Engnath - I wish he were on-line so his efforts could utilize the Internet.

    Best wishes.

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