CFS and viruses

Discussion in 'Fibromyalgia Main Forum' started by Clay2, Nov 17, 2006.

  1. Clay2

    Clay2 New Member

    On the Home page here, there is a CFS treatment paper by Dr Charles Lapp that states:

    "You really don’t have to worry much about viruses. Most of you can tell me that since you became ill, you’ve never had a flu, have you. There are probably 10-15% of you that get everything that comes along, but the majority don’t."

    I read so much here about taking antiviral medication and I'm confused. Is that for FM, or is it the 10-15% of CFS he speaks of? Or both, I suppose.

    Am I the only one here who thinks he has an overactive immune system and doesn't need anti virals?

    These diseases are confusing enough, sorting this board out sometimes is an additional challenge since we can't easily tell who is taking what for what reason.

    Clay, (CFS, not FM)
  2. dani78xo

    dani78xo New Member

    I think there are A LOT more people with CFS than 10-15% that have problems with viruses.

    I get everything I come in contact with. Someone who's going to get sick in two days could just walk past me and I'll get it. I know a lot of other people with CFS have this problem, too.

    I don't think immunity is as big a problem in FM. Before I started showing the full symptoms of CFS, I wasn't really getting sick much.

    To sum it up, I just really don't believe what Dr. Lapp claims...there are too many CFS sufferers that also endure asinine viruses, it doesn't make sense that there's only 10-15% who have that problem.

    Just my opinion, anyways.
    -Danielle
  3. cct

    cct Member

    On 11/13/06 Mikie posted an article from Dr. Darrly See that states that there are "37.5 Viruses activated in CFIDS!"

    I know that I am carrying a high viral load and I also know that, just like Danielle, if I come within 10 feet of a cold or flu virus, I will become very sick.
  4. Slayadragon

    Slayadragon New Member

    Read my post called "Famvir My Status Report." It includes an immune system panel I had, along with information about my total viral load.

    I never get colds or flus either, but that apparently does not mean that my immune system is taking care of the viruses.

    My recent hypothesis is that the reason I don't "get sick" is because my body has given up fighting hard (e.g. by producing mucus to get the stuff out of my system or fevers to burn them out).

    I don't know how long ago Dr. Lapp wrote that comment, but it's possible he's changed his mind by now. If not, he seems to be in the minority amongst people who are paying attention to this stuff.
  5. Clay2

    Clay2 New Member

    is because I have read these other posts about viruses and they don't agree with Lapp.

    Now that I look closely at the Lapp document on the Home page, I see that although the publish date is 2006, the content is based on his work from 1997. I guess that explains it - his opinion has been superceded by the multi-virus theories.

    Thanks for helping me understand this.
  6. LaQuiet

    LaQuiet New Member

    I can recall having the flu ONLY ONCE in the last 17 years... Maybe I'm one of the 85-90 percenters? lol I also don't take anti-virals...

    LaQ
  7. Mikie

    Mikie Moderator

    If you look at the immune system as more complex than just overractive or underreactive, it may help to clear up the confusion. There are two parts to the immune system and with us, typically in both FMS and CFIDS, one half overreacts and the other underreacts to infections. This means that some kinds of viruses do not make us sick. It also means that other types of viruses, funguses, and bacteria can infectect us and thrive for decades below the immune system's radar. Dr. Cheney has written an excellent article on this and I'll go to the library to see whether I can find it.

    Love, Mikie

    Unfortunately, it appears the article has been removed. I'll see whether I can find it on Dr. Cheney's website.

    OK, here it is:

    *************************************

    Written by Carol Sieverling, this issue's articles are based on tapes of her October 2000 visit. Dr. Cheney gave permission to share this information, but has not reviewed or edited it. Articles on other topics will be in the April 2001 newsletter and will soon be available on our website in the section on Dr. Cheney. These articles likely apply also to FMS patients experience cognitive difficulties in addition to pain and fatigue, since Dr. Cheney believes they may also have CFIDS.

    CFIDS patients are Th2 activated. This means they over-respond to toxins, allergens, normal bacteria and parasites, and under-respond to viruses, yeast, cancer and intracellular bacteria. Dr. Cheney suggests six products that can help rebalance the immune system.

    Dr. Cheney explained that the immune system has two different modes of attack, based on the type of invader. One is Th1 (T Helper 1). It goes after organisms that get inside our cells ‚ intracellular pathogens. It is also known as cell-mediated immunity. The other is Th2 (T Helper 2). It attacks extracellular pathogens ‚ organisms that are found outside the cells in blood and other body fluids. Some call this humoral or antibody-mediated immunity. A healthy immune system is dynamic, able to switch back and forth as needed, quickly eradicating one threat and then resting before responding to the next.

    (Dr. Cheney began this conversation by drawing a large inverted "V". At the top point he wrote "Th0", which he called "Th naught". The left arrow pointed down to "Th1" and the right arrow to "Th2". The arrow on the right was much darker and thicker, indicating that CFIDS patients are Th2 activated.)

    Th0 are the naive, or unformed, cells of the immune system. They are resting, just waiting for an invader. When infection occurs, they convert to either Th1 or Th2, depending on the type of threat. When the resting cell is exposed to a virus, cancer, yeast, or intracellular bacteria (like mycoplasma or chlamydia pneumonia), the Th1 response is initiated. (Dr. Cheney wrote these organisms beside the left arrow.) The weapons of the Th1 system include cytotoxic T cells and Natural Killer (NK) cells. (Cheney drew these below "Th1".)

    On the other side are normal bacteria, parasites, toxins, and allergens. (Likewise written beside the right arrow.) These trigger a predominately Th2 response. Its weapons include eosinophiles (Eos), polymononuclear cells (PMN), and antibody secreting cells (Ab). (Likewise written below "Th2".)

    How does the naive cell know which pathway to take? It depends on the cytokine information received. The presence of any organism from the left side triggers production of a cytokine called Interleukin 12. IL-12 causes the Th0 cell to move down the Th1 path. On the other hand, organisms on the right side trigger the production of Interleukin 10 (IL-10), which causes the Th0 cell to move down the Th2 path. (Cheney added small vertical dotted lines on each side, pointing upward to "IL-12" on the left and "IL-10" on the right. He then drew horizontal dotted arrows from "IL-12" and "IL-10", each pointing inward toward the "Th0", indicating that these cytokines determine whether it will become Th1 or Th2.)

    Cheney said this is the point where it gets very interesting. Viruses, especially herpes viruses like EBV, CMV and HHV6, make proteins that mimic IL-10. The virus deceives the immune system into thinking that the threat is coming from the opposite side! So the immune system shifts from the Th1 mode that attacks viruses to the Th2 mode that does not. The virus increases its chances of survival by diverting the immune system. It is now thought that many, if not most, pathogens have this ability. (To represent this effect, Cheney drew a horizontal arrow about half way down the inverted "V", originating from the left side and pointing toward, but not quite touching, the right side. The line was labeled "IL-10 like peptides". Below it he drew a similar arrow from the right side that almost reached the left side. It was labeled "IL-12 like peptides".)

    Researchers have demonstrated that most CFIDS patients end up stuck in Th2 mode. This has several consequences. When the Th2 system activates, it blocks the Th1 system. This suppresses the Th1 weapons, particularly NK function. Accordingly, there is also an increase in the Th2 weapons - the white cells and antibodies. Most notable is increased antibody production. Dr. Cheney said that if you measure antibodies to anything a CFIDS patient has ever been exposed to, they will very likely be elevated. (At this point he drew small arrows beside the "weapons": They pointed down on the left side to indicated suppression / lower levels; and they pointed up on the right side to indicate activation / higher levels.)

    Cheney notes that other problems ensue. Patients get into trouble on both sides: they overreact to things on the right side and under-react to those on the left. When they are Th2 activated, they no longer have the defense mechanisms to keep dormant all the things they caught in the past. They cannot suppress or control them anymore, and the EBV, chlamydia pneumonia, CMV, etc. reactivate. The yeast also begins to appear.

    The only defense against being eaten alive at this point is RNase L. (For more information about RNase L, see The Three Phases of CFIDS and other articles in the Cheney section of our website.) RNase L cannot kill any of these things. It only stops them from reproducing. According to Cheney, "It's a line in the sand saying 'No more replication', and it waits for Th1 to come and kill them. But Th1 never comes. RNase L sits there and grinds away, possibly going up and down as the pathogens activate and reactivate. But they never get wiped out. RNase L holds the line, waiting for the cavalry that never arrives."

    While it is valiantly trying to hold the line, it is also chewing up human messenger RNA, inhibiting all the enzymes in the body, disrupting protein synthesis, and generally making patients miserable. As RNase L grinds away, it eventually shifts into "after-burner" desperation mode - the more powerful and deadly low molecular weight form discovered in CFIDS patients by Suhaldonik.

    Cheney commented "RNase L is a very good anti-cancer defense. So as long as you're involved in this scenario, you don't get cancer. But a lack of growth hormone will wipe out RNase L, and we now know there is profound loss of growth hormone in CFIDS. Growth hormone is responsible for protein synthesis, and RNase L is a protein. So if you lose growth hormone, you lose protein synthesis, including RNase L. That may explain why, as the disease wears on and you get more injury, you stop seeing high levels of RNase L. You can't make it anymore."

    He believes this is a very scary situation. Patients are Th2 activated and Th1 suppressed. The things on the left come out and there is nothing to stop them. There is no Th1, and eventually no Rnase L. He also believes patients need to balance the immune system - to push it a little more towards Th1. That way they will lose some of the overreaction on the right and gain some control on the left.

    Cheney recommends the following to help shift the immune system from one mode to another. They are called "right to left shifters". Three of them are published, or near publication.

    1) Kutapressin (published, prescription) Kutapressin is an immune modulator and a broad spectrum anti-viral. Dr. Cheney has found that it is most effective when the dose is varied or "pulsed". The dose should vary from 1 to 4 cc daily; see the section on Isoprinosine for this theory. Dr. Cheney strongly suspects Ampligen is a right-to-left shifter also. He has said in the past that Kutapressin is rather like a weak form of Ampligen.

    2) Isoprinosine (published, prescription) Published for use in CFIDS, this anti-viral enhances NK function. Dr. Cheney believes it would also be good against intracellular bacteria since it is a Th2 - Th1 shifter. It appears to raise IL-12 and lower IL-10, which turns off Th2 and turns on Th1.

    It is also called Imunovir and is very nontoxic, very safe. It has been approved in Europe and Canada for just about any viral infection for 18 years. It is not approved in the US (for political reasons, not safety concerns).
    Week one, take 6 tablets a day, Monday through Friday, and none on the weekend. Week two, take 2 tablets a day, Monday through Friday, and none on the weekend. Repeat this cycle. But do not treat every month. Do two months on and then one month off of this "pulsing" dose. This medicine works best when you do not treat regularly. If you treat continuously at the same dose, it stops working. It is an immune modulator, and Dr. Cheney suspects all immuno-modulators are like this. If taken continuously they stop working. The dose must vary so the immune system never knows what to expect.

    3) Pine Cone Extract, Cheney said, "They make a tea from this in Southern Japan and they have significantly reduced cancer rates. It's thought to work at the gene level in lymphocytes, where it turns on IL-12. It also shuts down IL-10 at the gene level, and that causes a shift towards Th1. Pine Cone extract is expensive, but at just 10 drops a day (in the morning), of all the possibilities, it's probably the cheapest per day." It is called PineExtra, and 1 oz is about $60, but it lasts a long time.

    4) Earth Dragon Peptides, Earth Dragon is round worm peptides. It causes a shift to the left, and is believed to be very similar to IL-12. There has been a huge surge in the use of ED peptides to treat Inflammatory Bowel Disease, specifically Crohn's Disease. One professor at UNC treats all his Crohn's Disease patients with Earth Dragon. It is very non-toxic and safe. This is a good choice for those who want to balance their immune system and also have bowel problems. Earth Dragon is about $36 for 150 caps. The dose is two a day.

    5) Heparin (prescription) Heparin is a Th2 - Th1 shifter. One advantage for many patients is that it is also an anticoagulant. Dr. Cheney only recommends this if a patient has a coagulopathy. About half of his patients do, according to the ISAC test. (See http://www.hemex.com or "Blood Related Disorders in CFS/FM.")

    6) Formula 560 Transfer Factor, Formula 560 is an immune modulator. Dr. Cheney likes this product. It reportedly works against HHV6 and Lyme Disease, as well as other problems. It costs about $585 for the first three months, then the dose drops one-third. It averages out to about $130 a month for the first six months, and $65 thereafter. (The cost of this product has reported dropped since this was first published.)

    NOTE: Pro Health is an additional source for the Transfer Factor products (we carry the Formula 560 as well as the exact same product and from the same manufacturer that we call Transfer Factor 6000 and sell it for less).

    Which should you use? Cheney recommends that you pick one and see what it does to your NK function. It is a question of whether it will work and how much it costs. NK levels will rise if there is a shift from Th2 towards Th1. Before beginning one of these products it is best to get a baseline on NK function. Then test again after having been on the product for one to three months. Dr. Cheney uses the lab of Mary Ann Fletcher, an NK specialist and colleague of renowned researcher Nancy Klimas, at the University of Miami. Her lab is no more expensive than commercial labs, and is top quality. Cheney emphasizes that you must have a quality lab do this test: do not use just any lab. For test information, phone 305-243-6288 or fax 305-243-4674. The test is called "Natural Killer Cell Function Assay" and costs $350.


    [This Message was Edited on 11/18/2006]
  8. Clay2

    Clay2 New Member

    Given today's brainfog, reading your post has been an all day event. It lays the problem out well, and I think I finally get it!
  9. Gothbubbles

    Gothbubbles New Member

    Just because the body isn't showing symptoms (stuffy nose, sneezing, coughing, etc) doesn't mean you're not sick!
  10. Catseye

    Catseye Member

    I couldn't find the pine cone extract anywhere. But there are some other things I found that will shift the immune system also: IP6, beta glucan, antler velvet and the undenatured whey protein that raises glutathione. I'm assuming if I take them the only way I'll know if they're working is my food allergies will subside. I'm sick of going to the doctors and getting expensive tests done. What does anybody else think? karen
  11. Slayadragon

    Slayadragon New Member

    I read this Th1/Th2 stuff years ago and did the kutapressin, heparin and pine cone extract. No results whatsoever.

    I've never heard of anyone who's gotten more than a slight perceived result with kutapressin, and have never known anyone else who used pine cone extract. Some people here like heparin, but they don't seem to think it's for its Th1/Th2 qualities.

    I like ImmunePro Rx (denatured whey protein) for detoxification, but it has never helped me with energy. (It supposedly makes glutathione, which definitely helps in detoxification and could help with energy if circumstances were right).

    The antiviral Famvir that I've just started taking has totally knocked the wind out of me, though. It's not a side effect, I feel sure. I'm assuming little dead viruses everywhere, which assumedly would be a good thing in the long run.

    Cheney may be right about the Th1/Th2 thing (who knows?), but fixing it could be another thing entirely.
  12. Mikie

    Mikie Moderator

    It is true that one can be infected with a variety of pathogens and be asymptomatic. Some pathogens, like mycoplasmas, Lyme, and the Herpes Viruses, can infect, make one sick, and then go into a latent stage. In their latent state, these pathogens will not necessarily make one feel any sicker than one already does with our illnesses. If they reactivate, one will feel sick.

    Some pathogens are active but thrive below the immune system's radar. These may or may not make us feel sick but they will keep us in a weakened state. I do not think we can heal until the infections are addressed. I've made very slow progress with the antivirals, antibiotic, transfer factors and Heparin. I have to look back five or six years to when I was bedridden most of the time to see just how far I've come.

    That Heparin is an immune system modulator is an added bonus. Most of us take it for hypercoagulation which often accompanies chronic infection. It rids the blood of the fibrin overgrowth which affects clotting and circulation. The fibrin also give pathogens a haven to hide out from the immune system. I tried enzymes and didn't have a reaction to them except that they tore up my stomach. I had a huge reaction to the Heparin. I think we have to try different things; it's a process of trial and error. What works for me may not work for others.

    Love, Mikie
  13. Catseye

    Catseye Member

    Do you know if hypercoagulation is something that is evident in "regular" bloodwork or is it a specific test that I have to ask for? thanks, karen
  14. Mikie

    Mikie Moderator

    Go to the HEMEX Labs website and read about the ISAC panel of bloodwork. There is a wealth of info there on the hypercoagulation.

    Love, Mikie

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