1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
Discuss the article on the Forums.

What viruses to test for?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ocean, Mar 12, 2012.

  1. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    What are all the viruses people are being tested for in order to see if antivirals might help them?

    Do regular infectious disease docs who are not CFS specialists give antivirals to CFS patients?

    Is there a big difference between the various antivirals people talk about on here, Valtex, Vlacyte, Famvir, etc or are they all basically the same? Or do they address different types of viruses?

    Are there significant side effects/risks?

    I have no idea about any of this stuff, but want to get more acquainted so I can discuss with a doctor. Thanks.
  2. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    Hi Ocean,
    I have just started looking at AVs and spoke to my doctor a couple of weeks ago about it, to which he said that he does see improvement while on AVs but, as soon as a course is stopped, the patient generally relapses. I've been dealing with a crash of epic/original-onset proportions and was in the ER a few times where I demanded an EBV titre test (ER can't order a send-away test, but my then-PCP did order it, the ER kept the blood around a few days waiting for the request). The results I got had to do with the VCA IgG and the EBNA igG, the latter being extremely high. Since my PCP has just sort of "dumped" me as a patient--really--I haven't been able to figure out exactly what these results mean, but I suspect it's evidence of a reactivation, big time.

    My non-PCP/specialist has ordered IGeneX lyme testing, and testing for HHV6, Coxsachie, mycoplasmas and I think something else. I turned the paperwork into the lab, so I don't remember what else was ordered. He also wants to test T4 to T3 conversion and DHEA and several other things. I haven't had anything drawn due to an inability to function and, as importantly, no coverage on the tests due to my PCP dropping out. I think it's normal for specialists to require working with a local doctor and, for a couple of years, it's always been that he sends clinic notes and lab requests and then my doctor simply signs the form so that insurance will cover their part.

    When reading about Valcyte, which I think is the most/only? effective antiviral for EBV, I found that neutropenia is a conflict, which I have to a certain degree. My WBCs were low at the ER after weeks of horrific symptoms, and I mean really horrific. Usually my WBCs are slightly elevated, even on a good day, so I took it to mean--along with my particular flare fevers--also horrific, that I'm close to the Western definition of deficient. So, I'm not sure if everyone taking Valcyte has a fairly robust immune system or if people with my profile are also taking it and just watching labs.

    Not sure if inf. disease docs give antivirals, my specialist is an environmental doc/immunologist. Some regular PCPs will try an antiviral, but I doubt any would approach Valcyte, which is probably a good idea. I was surprised to find that the rest of the AVs aren't really supposed to do much for EBV, and generally are given after a certain length of time of Valcyte, so that the side-effects of the Valcyte can be "pulsed" in a way. Other than the regular Herpes viruses, I haven't found any info that the "normal" AVs really help, and recently I read that they are finding that those can stop a certain number of flares but patients are still shedding the virus while on meds and still transmitting it.

    Sorry, long post, not sure if I answered anything, just wanted to pass along what I've been looking into. The more I've thought about things, the more I am interested in bolstering the immune system, though I've been trying to find good info on how EBV can screw that up--maybe for life? I'm stuck in a quagmire of trying to find out how to change the HPA axis through neuroplasticity (just wondering), and then not knowing how much damage EBV (or other viruses/illnesses) can do to the cells that can't be mediated. Needless to say, I've given myself a good headache.

    Good luck and I'll post whatever new info I come across.
  3. Timaca

    Timaca Senior Member

    Messages:
    420
    Likes:
    75
  4. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    I tested the following viruses :

    1. HHV-6A, IgG,IgM Ab
    2. EBV Nuclear AG AB
    EBV-VCA Antibody IgG
    EBV-VCA Antibody IgM
    EBV Capsid Ab IgG
    3. Cytomegalovirus antibody (IgG)
    Cytomegolavirus IgM

    I also tested for several bacteria including Lyme (and was positive for most of those as well). I also did total IgG and subclasses to assess my immune function overall.

    It would probably depend on the doctor whether or not they would feel comfortable prescribing antivirals. My Lyme doctor prescribes them for me along with antibiotics.

    I think there are differences between the antivirals though I am just learning about them too. From my research, Acyclic Nucleoside Analogues are one type that include acyclovir (and its prodrug valacyclovir (Valtrex)), as well as ganciclovir, (prodrug valganciclovir (Valcyte)). Valtrex isn't meant to be very effective against EBV or HHV-6 or CMV. I think it may work best on the Herpes simplex virus.

    Valcyte does have efficacy against EBV, CMV, and HHV-6 but it does come with the potential for more side effects. I've been trawling around looking for people who have actually experienced bad side effects from Valcyte though and have not yet found any. It is the one I picked and I will just keep up with labs and add a CBC to my regular CMP every few weeks.

    Famvir also falls into the above class and seems to be effective against the three viruses. It may be more of a middle of the road choice than either Valtrex (that doesn't seem to work very well) or Valcyte (which may have side effects). I would think though that it would be at least somewhat dependent on dosage.

    I'm currently also doing Nexavir injections and I have noticed a benefit from them. Nexavir is an immune modulator, anti-viral, and anti-inflammatory substance. There doesn't seem to be a great consensus on exactly how it works but it may increase glutathione in the liver. If your insurance will cover it and you are comfortable giving yourself subQ injections, I would definitely recommend a trial based on my experience.

    I have read about people combining antivirals together and posted the other day asking for people to share experiences with that but unfortunately didn't get any replies...perhaps this thread will spark some discussion of that topic as well.
  5. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    361
    Likes:
    17
    Olympic Peninsula, Washington
    I've been researching this lately and wondering about the cost and efficacy. If my understanding is correct, it is a med that needs to be taken continually for improvements to be maintained; is this correct? Adding another injection to my regimen sounds unattractive, but I remain interested in immune modulation/anti-inflammatories, and it seems this has the better results than immunovir (but that is only based on what I've read). I've also seen that there are pharmacies that will compound it into a gel, but that that form is not supported by the Nexavir makers, have you heard anything about this? Thanks.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,221
    Likes:
    4,524
    australia (brisbane)
  7. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    I pay $100 for 3 vials (a month's supply) under my insurance plan through Medco but I'm sure that would vary based on individual coverage.

    Village Pharmacy in TX will compound it into a gel but it was around $400 a month to do so and that was too large of a difference for me not to just bite the bullet and use the injectable form instead. I've heard that the gel has a barnyard odor as well which also sounded unappealing to me.

    I have heard that the benefits stop when the medicine is stopped. I just started it about 2 months ago though so have not even given any thought yet to what or when my weaning might take place.
  8. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,845
    Likes:
    925
    US
    Make sure the HHV6 is done through a top lab.
  9. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.

    Thanks so much for breaking it down so clearly Ema.

    -Right now the main person I see for CFS is my rheumatologist. He seems fine with referring me out also. If I want to look into testing for virus stuff should I ask to see an infectious disease person?

    -What about for immune modulators, is there any testing you get to "qualify" yourself for that or is it more based on symptoms?

    -What type of doctor prescribes that?

    -Are there other immune modulators too or is what you're taking the main one?

    Thank you!
  10. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.

    Any suggestions? I usually just get sent to Labcorp.
  11. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Heapsreal, wonderful link. Thank you. It's laid out really clearly, even for my rain fog addled brain. Thank you!

    Thank you Ticama. Someone had shared that link with me before and I forgot. Will be printing it out now.

    Zoe a.m. Sorry you're doing so bad right now. I hope it improves quickly. Thank you for sharing your thoughts and experience. I always thought I needed to see an infectious diseased doc for this, but maybe I need to be looking for an immunologist?
  12. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    I have never seen an infectious disease doctor so I'm not sure what the mentality is as far as their attitude in general towards using antivirals for CFS/ME. If you have a good relationship with your rheumatologist, I'd start there and see if s/he would work with you.

    I have had a lot more luck with integrative or functional med doctors over traditional doctors in general though there is much variation. The only problem is some of those doctors want to limit you to herbs etc when it is my belief that those of us with the type of infections described need a much more aggressive treatment including pharmaceutical meds. It really will depend on your specific doctor. The best thing you can do is to go in with a plan of what you want and be firm about it once you have found an open minded doctor.


    If you read about Th1 vs Th2 immunity, it may help. I copied this from an earlier post on this website:

    Melissa Kaplan's

    Chronic Neuroimmune Diseases

    Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...

    Last updated December 18, 2009


    Balance the Th1/Th2 Immune System

    From a talk by Paul Cheney, MD

    Transcription by Dallas-Ft Worth CFS Support Group

    Written by our group facilitator, 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. Dr. Cheney plans to speak in the Dallas - Ft. Worth area on October 20, 2001. Contact the DFW support group for information, particularly about the videos that will be available of the seminar.


    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) but is easy to get from Ireland with a prescription. 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 (supplement, www.nutricology.com, www.needs.com) 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.


    6) Formula 560 Transfer Factor (to be published, supplement, www.immunitytoday.com) 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.)


    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.
  13. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Thank you so much Ema for this wonderful info. I will be printing all this out for my reference.

See more popular forum discussions.

Share This Page