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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

valcyte, nexavir, gamma globulin, cholestyramine

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by rosebud, Aug 2, 2009.

  1. rosebud

    rosebud

    Messages:
    34
    Likes:
    0
    chicago
    Hi all,

    I am new to your site. I thought you might be interested to know that I have had EBV, CMV and HHV-6 for over a decade with flares and remissions, living a fairly "normal" life by using transfer factor, valtrex, and many other supplements.

    Three years ago I took a new job in a hospital and my office was filled with mold. I became sicker than ever. I started valcyte in November of 2008 and was on it for 4-5 months. I felt awful on that med, even though my blood tests for toxicity, etc were all ok. I developed severe heart palpitations, and could barely move from my sofa. I stopped it and my ebv, titers were higher than ever.

    I work with the fibro and fatigue center in michigan ( dr teitelbaum is a friend and he helped me with the fibro years ago)

    I am now on nexavir,( one month and cholestyramine(for biotoxin removal)
     
  2. Jody

    Jody Senior Member

    Messages:
    4,078
    Likes:
    552
    Canada
    Hi Rosebud,

    Welcome to the forums.

    It's ironic to be working in a hospital and end up sicker. Or, maybe not so ironic, I guess hospital's are great places to pick up disease.

    I hope your new treatments are helping, and I hope you find yourself becoming stronger and healing.
     
  3. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Hi Rosebud,
    Welcome!! I am new to the boards, too. I notice you have the same viruses I have.
    I see Dr. Lerner in Michigan and am on valctye, valtrex and antibiotics for mycoplasma pneumoniae.

    How are you doing these days???? Did your EBV come down yet???

    Is there a test they do for mold exposure??

    I hope you are finding healing.....
     
  4. rosebud

    rosebud

    Messages:
    34
    Likes:
    0
    chicago
    Hi KC22:

    I have not had my ebv titers tested since the end of april - so I don't know if they have gone down or not

    As for the mold test -- a physician in chicago who is interested in Dr. Shoemakers protocals for treating neurotoxins (www.chronicneurotoxins.com)
    did a number of tests, that do not specifically test for mold, but for toxin exposure in general as well as some genetic testing which unfortunatly showed that I do not clear toxins-- as many Pwc'S seem to have problems with- i am currently on Cholestyramine, a cholesteral med that binds toxins in the intestines -- to see if it will help clear the mold

    how are you doing on the anti-virals? I know some people do well on the valcyte-- valtrex helped me for many years, but must have stopped working when i had the mold overload-- do you like Dr. Lerner?

    Rosebud
     
  5. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Hi Rosebud,

    Thanks for the info on the toxin exposure. I always wonder if that is one of my issues.

    I have been on valcyte and valtrex over a year and while I have improved from a 2 to 4, my numbers aren't moving a lot. I always wonder why. Dr. Lerner doesn't seem to concerned about that. My tachycaridia has improved greatly, along with my fever of almost 3 years came down since being on the anti-virals.

    So far I have taken them okay. I get accupuncture and neural therapy a couple times a month and I think that has helped me endure these meds.

    Yes, I do like Dr. Lerner. He was hard to get to know in the beginning, but I see how much he cares about what he is doing and helping all of us. He grows on people if you stay with him long enough.

    Cindy
     
  6. SDD1244

    SDD1244 Guest

    Kc22


    One of my concerns with these antivirals is that if you have a bacterial infection (two-thirds of CFS patients do)... then eventually I would think that you could relapse.

    Has Dr. Teitelbaum tested you for mycoplasma and/or other bacterial infections ?
     
  7. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    SDD1224-

    Yes, Dr. Lerner tests me every 6 weeks. My last visit, my antibodies to mycoplasma p. was 1622, very high. I have been on doxycycline for about 2 years. He also had me live in MI for 6 weeks and do IV doxy three times a day. My fever of 3 years broke. For that I am grateful.

    So I am not sure what we are going to do next. I see him at the end of August.
    I have improved some, so I am not sure if he will just stay the course.
     
  8. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    Central Texas
    rosebud and all cholestyramine

    I am a former Dr L patient, but had to go off valcyte and stop travelling for financial reasons. Eventually the valcyte toxicity caught up with me and he was cutting my dose, so that worried me.

    Since starting with a new doctor, I've been dx'd with Lyme. Not 5 bands, only 2, but that's one more than Dr L found. I think I've had it for 11 1/2 years!

    I also had the viral infections, positive IgM to EBV at one point, research tests showing active HHV-6 and CMV and enterovirus. But now I wonder if they came along after the Lyme. I got something before the EBV that caused me to have a fever, worsening fatigue and cognitive symptoms, and my finger joints swelled.

    Sorry for the digression. As soon as I can, I want to have the genetic tests as well. I think they tell you if you can clear Lyme neurotoxin right? If the HLA shows any susceptibility, I want to try cholestyramine.

    How are you doing with it? Some people have a reaction. I like the simplicity of your treatment!

    KC22, I recognize your story. Hope you continue to improve. Dr L is very patient, so he must have had patients who improved slowly.

    Thanks for your experience and good luck!

    Kelly
     
  9. rosebud

    rosebud

    Messages:
    34
    Likes:
    0
    chicago
    I felt ok on the cholestyramine(hereafter referred to as CSM), the first week and then on the 4th week had a bad reaction and stopped it for a week or so. Started it up again at a lowere dose. I have been on Nexavir for about a month and hate to jinx myself by saying that I do feel more energetic. I work with the fibro and fatigue center in michigan and at my next appt will discuss whether or not to see Richie Shoemaker ( who developed the neurotoxin protocal). I'm not sure if my doctor is doing it right. Supposedly, it is very hard to get better if you have the genetic code that dooms you- which I do. But, there is evidence that we don't have to accept our DNA's choices.

    Am also working on the Amygdala retraining, but only sporadically when I remind myself to do it. I believe that it has possibilities to help - negative thoughts can create stress, and when we are stressed, our bodies pour out alll kinds of toxic substances, when we are not stressed, our body can heal. But, it can be stressful trying not to be stressed!

    This is a wonderful forum-

    Light and Peace to you all
    Rosebud
     
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I've met just one of Dr. Lerner's patients. As I remember he was in really bad shape and was able to regain some health but eventually he plateaued. He gave it a good shot - several years as I remember - but eventually moved on. I'm sure as with any therapy there are many different stories to hear.
     
  11. KC22

    KC22 Senior Member

    Messages:
    158
    Likes:
    3
    Ohio
    Cort,

    Do you happen to know where this man plateaued to??? I also wonder if this will happen to me... I am hoping for more movement.

    It is interesting to see the many treatments that are helping different people; Ross with Vistide, Mike with neural therapy and some with anti-virals. Again, there doesn't seem to be one size fits all.
     
  12. rosebud

    rosebud

    Messages:
    34
    Likes:
    0
    chicago
    cholestyraimine/nexavir/methyl b12/update feeling better

    Hi all,

    Just wanted to update you on my progress with nexavir injections, and cholestyramine. After I stopped the cholestyramine about a month ago I started it up again. I started to feel really good - better than i have in two years. I had an EBV, CMV, test which was still off the charts! My doctor doesn't know why I feel better. Maybe the cholsestyramine is taking out other toxins as well as the mold ( it does that) and that is making me feel better. Cholestyramine is a bio toxin eliminator and binds everything in its wake, including medications and vitamins so you have to be careful when you take it.

    I wonder if this has been used by anyone since you all seem to talk about detox and your problems with it. Maybe this is worth looking into. It is not expensive.

    Peace and light to all
    Rosebud
     
  13. kolowesi

    kolowesi Senior Member

    Messages:
    260
    Likes:
    14
    Central Texas
    rosebud detox and CSM

    Hi,

    Glad to hear your exciting news! May you continue to get better.

    You have me excited about the CSM. Maybe it's time to try it. I feel toxic from the antibiotics (plus valtrex and diflucan) and I'm doing physical therapy too.

    Maybe CSM will help. I will fax my doctor and ask him for a prescription.

    You must have gotten away from the source of mold as well, do you know when that happened?

    As for titers, there may be a time-lag, and it may vary between people. I think I was what they call "TH-2" shifted for a few years; I didn't catch any colds, had lots of inflammation, and had high antibodies.

    After about 8 months on valcyte, the inflammation and oxidative stress were much better. A few months more and titers started to fall.

    Feeling better is the important thing. It would be nice to know why, and maybe it will become clearer with time. Keep us posted and thanks a lot.

    Kelly
     
  14. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    It's odd about the Valcyte and the EBV titers while on it. It seems that everyone has an increase in antibodies after starting the Valcyte. I believe my EBV Early Antigen went from 2050 to just under 3000 after 6 weeks, but it was never tested again. I quit after about 4 months because thyroid started going bonkers. Got it stabilized and think I'll finish what Valcyte I have left (3 months maybe). The cholestyramine sounds like a good follow up to pull out everything and go from there.
     
  15. lostinthedesert

    lostinthedesert Killer, Clown, Priestess

    Messages:
    115
    Likes:
    1
    I have found that there is some confusion among other physicians WRT Dr. Shoemaker's genetic classifications. It seems that some doctors, even some who have spent time at Dr Shoemaker's clinic, confuse the Dreaded Genotypes with the Multi-Susceptible Genotypes (these are all actually HLA-DR haplotypes). In reality the dreaded are a small subset of the multis but some doctors are telling everyone who is multi-susceptible that they have a dreaded genotype. I know this for a fact because I have spoken to people and seen their lab reports with my own eyes. Of course I have seen people with all sorts of genetics who were extremely ill and not able to recover. I also know one person who Dr. Shoemaker told that she may not even survive. She struggled for a long time and now seems to be making an amazing recovery after leaving all the conventional MDs behind.

    I was a Shoemaker patient in 2007. Been taking CSM since March of that year. I used to take it 4X a day. Now I am down to 1.5 scoops 1X/day. If I stop it my neuro symptoms get worse. When I first started I herxed very badly for 2-3-4 weeks. I also had a resistant toxic bacteria colonization which we had to deal with.

    I have to write a review of Dr. Shoemaker some time. I think he is a brilliant man but I really think that he is working with quite limited treatment options for people who have been extremely ill for a long time. He even states that a biotoxin patient's ability to recover goes down drastically after they have been ill for about six months.

    I have used CSM, his multi-antibiotic (oral + multi nasal antibiotics with edta) treatment for the toxin producing colonization and his EPO protocol. They have all been very helpful but I am still very ill and not too functional. Of course, I should mention that I have had CFIDS, MCS and Fibro since about 1986 but had crashed horribly about 5-6 months before I saw Dr. Shoemaker..

    I did the EPO according to Dr. Shoemaker's protocol but while not under his care. I am one of the people who gets some improvement with EPO but it does not last. According to Dr. Shoemaker's published papers, some patients have prolonged improvement even after stopping EPO. For me it is too expensive to take EPO constantly so I have only been doing a cycle occasionally.

    Anyway, I am stumbling through the fog here and don't even know what I set out to say. I'm going to take my CSM. It has been hydrating for about 20 minutes. That makes it a lot easier on the upper G.I. tract.

    Peace,
    Susan
     
  16. silicon

    silicon Senior Member

    Messages:
    148
    Likes:
    72
    cholestyramine chatter

    Has anyone been taking the cholestyramine lately? I was considering trying it, as I have always been quite allergic to mold (and an alternative practitioner who did live blood analyses on me once said that my blood fermented after some number of hours). On the other hand, I wonder if something like activated charcoal, or bentonite might be a more gentle approach, targeting a similar goal.
     
  17. healing1

    healing1

    Messages:
    32
    Likes:
    5
    Took a very tiny amount in a bottle of water, got a little stomach acid and slight pain, nothing happening yet.
     

See more popular forum discussions.

Share This Page