Low CD4 T-cell count and CFS

Discussion in 'Fibromyalgia Main Forum' started by denis321, Nov 12, 2009.

  1. denis321

    denis321 New Member

    I know there are a couple of people here like me who have low T-cell counts - mine are in the 300 range.

    I'm prone to viral infections (flu-like exacerbations) that last from weeks-months on top of the usual CFS malaise. These feel bad but what concerns me is the risk for opportunistic (odd) infections - much like what HIV patients get when their CD4 counts dips below 200 - as you can get much sicker and die from them.

    From Spacee here, I heard that NIH did some work with this in the 1990s but I haven't been able to find the data yet.

    What I hope to know is, if you are or were like me:

    1. Did you or anyone you know with this get an opportunistic infection? I heard that Cheney saw a couple people before with this and opportunistic infections.

    2. Did anything appear to help with the T-cell count - e.g. did your doc monitor it and you saw it change with some therapy? Or did the T-cell count seem to gradually rise on its own? How long was it from the time you were low to it rising again?

    3. If your CFS improved, did your T-cell count improve with it?

    I haven't found any published written reports about opportunistic infections and CFS - doesn't mean they don't exist though which is why I'm posting here. Thanks.
  2. RunningAntelope

    RunningAntelope New Member

    Denis, my wife and I both suffered severe T-cell depletion. My CD4 count was well below 300 and hers was just below it. In essence, we were the HIV- AIDS patients. We both acquired mycoplasma pneumonia (walking pneumonia) and various other infections. I had staph infections, fungal infections, molloscum contagiousom, which, while not uncommon in children, is quite uncommon in adults besides end-stage AIDS patients, black "hairy" tongue, various mouth sores of unknown origin, cuts that wouldn't heal and bleeding that wouldn't stop, and even got some basal cell carcinomas at the ripe old age of 27.

    This was before I had a "diagnoses," and only time and some consultation with both a specialist in evironmental illness and an "applied kinesiologist" who focused on cleansing the liver and changing the diet to eliminate food allergies really helped. The T-cell count did gradually rise, and I am now in the normal range, albeit at the low end the last time I was tested. While I never got wholly better and didn't start making real progress until I saw Dr. Cheney, my wife, who addressed her sleep hygiene, draconian diet, and stress from the very beginning pulled out of it to 90% of her former self.

    This is all anecdotal of course, though I was, over time under treatment of the following CFIDS specialists: Dr. James Jones, now of CDC infamy, Dr. Jesse Stoff, who recognized the severity of the immune depletion, but didn't really help (he did prescribe colostrum, which may have helped some and which Dr. Cheney uses to this day), several cardiologists in the Denver area (because my heart was failing, which Cheney, of course, ultimately recognized and treated), and Dr. Lerner, who really found nothing more than elevated antibody titers to EBV and HHV6a and wanted to put me on the standard valcyte/valtrex regimen.

    Anyhow, in the early days for me (this was some four years in to my illness), diet and time seemed to help, but only to an extent. Dr. Cheney has been a Godsend, but I didn't begin seeing hime until I was a good 12 years in and my heart and cardiac output was really going south.

  3. RunningAntelope

    RunningAntelope New Member

    I should mention that my wife went on midodrine for her POTS, and that seemed to help her, but it was useless for me. She weaned off it about six months before getting pregnant, and that seemed to "seal the deal." Even though I did get better with "time" and more attention to the illness, I really think addressing the illness in any way possibe from the EARLY going is a key element in getting better. The odds of a recovery decrease with time.
  4. denis321

    denis321 New Member

    I'm sorry you and your wife had to go through so much. I am glad she pulled through most of it and your health is better than it was. Hopefully, with this XMRV research, we'll get some answers and treatment soon. I don't expect miracles but if we can get something that is somewhat effective in the mean time, at least we will be here when a better treatment arrives.

    If I get anything unusual with this, I'm going to try to convince my doc to write it up and publish it as a case report because it needs to be documented in the medical literature how serious CFIDS can get. Something people can bring to their doctors and something researchers can see. I would encourage other people to talk to their docs or e-mail CFIDS researchers (like Nancy Klimas) about this if they get odd infections.

    I've been pretty sick but have been lucky to have a supportive doc who happens to have lots of HIV experience so I'm leaning on her to help me prevent and treat odd infections. At least I've been able to sleep with the meds she gave me.
  5. spacee

    spacee Member

    I don't think you will find anything from the NIH about the "study". After 5 years, I was told by Dr.Falloon (I think) that they were not able to get enough info to write an article.

    That was pure bull....

    I started with Kutapressin about 1990 which targeted EBV and HHV6 (although they didn't know it at the time). When it was no longer available (though now is under the name of Nexavir), I started taking Transfer Factors. Dr. Cheney at the time was using these in his practice.

    They helped me better than the Kutapressin. My t-cell count is up from 185 to about 300. I do not get sick often. If I feel like a sore throat is coming on, I take the cherry flavored zinc as recommended by an allergist. We keep them on hand cause if we wait until we have to make a store run, it is too late to help.

    Prohealth used to sell a lot of targeted TF's but the FDA really cracked down cause they were said to target certain viruses, pathogens and this had not been clinically proven. Now Prohealth only sells two targeted TF's and you have to call their 800 to get more info about them.

    I get more powerful ones (like PH used to sell) from Chisolm Bio. Lab 1-803-663-9618. I started with their TF #2 which is for CFS and then added the TF #9 cause Rich Carson (site owner) was taking it and the #2. #9 target mycoplasms and other things...too many for me to remember.

    They cost $150 for a bottle of 30 (or did). I take 15 of each during the month. Alternating days at random to keep my immune system guessing.

    They can "pack a wallop" as Rich says and I would not start more than one kind at a time, probably 1/2 of capsule...scoop out and put under tongue and let dissolve. Take at bedtime in case the "wallop" hits you.

    So sorry to hear you are struggling so. I was placed on an antibiotic for bladder problems for 6 years early on. That might have kept me from getting infections. Nothing ever grew from the culture but only a abx would stop the bladder "episode".
    Finally found that NADH stopped the bladder woes.

  6. spacee

    spacee Member

    If the others are too pricey or you just don't want to try them for whatever reason here is another great product.

    Transfer Factor Essentials with Matrix 2000 sold here for $40.40 or Smart Savings $32.00. This is a Best Seller here.

    My twin had really good results with this. Her tcell count was just over 300. Slowly improved as she recovered. Took 6 years.

    One year she had the flu shot but still got the flu. The next year she took this product and worked where other's got the flu, but she didn't. She worked in close quarters in a hospital lab where everyone touched what others had touched. She did NOT get the flu shot that year.

    Just a thought.


  7. RunningAntelope

    RunningAntelope New Member

    Denis, Dr. Cheney likes hepasunate and wormwood as ubiquitous antivirals via the NF-kappa B and/or Sp1 mechanisms (under the strict supervision of a physician). He also likes ImmuneExtra as a Th1/Th2 immunomodulator. But there is way more to the protocol in terms of prepping for and using his cell-signaling factors.

    I think you will get better with time, but really focus on your gut dysbiosis and liver detoxification (the scientist in me used to cringe at those words lacking any "credible," mainstream evidence), which I have inadvertently found to be key.

    If Dr. Cheney's theory is correct as I believe it is in that this XMRV is the Holy Grail, and, being a retrovirus, probably possesses complementary gene sequences capable of shutting off our own "coding" regions of DNA to ensure its own survival (HIV has a number of RNA fragments, which, once transcribed to DNA, are capable of doing this), then getting after this virus is probably a good idea, and everything else is downstream and modulates and exacerbates the illness. Dr. Cheney has had the pathophysiological model all along and never gave up the notion that a very virulent pathogen was behind this. He just needed the virus.

    [This Message was Edited on 11/14/2009]
  8. denis321

    denis321 New Member

    I'll look into it.

    Did you or your twin ever get any odd infections?
  9. denis321

    denis321 New Member

    Like you, I have a background in biology so the stuff about dysbiosis, detox also makes me skeptical but ultimately, we have to look at what works, right?

    I have no idea whether or how this plays into it but so far (knock on wood), I've not had symptomatic gut issues. I did and continue to eat yogurt daily for years prior to getting sick so I wonder if this helped.

    I have a traditionally-trained but open-minded doc who is willing to try out different things for me within reason. She has me on Acyclovir at a higher dose more to keep the EBV in check than any thought it would help me with symptoms. I was also on Valcyte for a time which didn't help me much symptomatically (so I stopped it) but it actually moved my CD4 count into the normal range for the first time in the years I've been sick. It came down again after I stopped it. (Duh! on my part)

    She is excited about XMRV - she said she would love to put her knowledge about antiretrovirals finally to work to get me wholly better. I'd like to see a little more evidence before we try it though.
  10. spacee

    spacee Member

    I had thrush (yeast) in the back of my throat is the only one I had. My twin at 300 was not yet to the opportunistic range.

    It finally has come back to me that the NIH decided that our tcells were in our muscles and not in our blood. Hmmm.

    A lot of CFSers have an upregulated immune system and don't "catch" much. I think I fall in that category, myself. Either that or I just wasn't exposed to much.

    My twins saw Dr. Cheney back in the 1990's because of terrible insommia. Her glutatione level was low. And he didn't recommend something like Ultraclear, sorry, can't remember exactly, but I am thinking it was for the liver. I saw Dr. Lapp at the Cheney Clinic a couple of years prior and he didn't recommend anything like that nor test for the glutatione but did do a CFIDS novel retrovirus test that I tested positive for.
    So, many wasted years.

    I don't know much about liver cleansing but I don't think yogurt would do it. I think that is more for the colon balance.

    Maybe you could do a post on liver cleansing?

  11. denis321

    denis321 New Member

    Yeah, I know the yogurt is mostly for my gut rather than my liver but eat it for the calcium and it doesn't seem to do me any harm.

    I have another question for you - hope I'm not prying too much. Was the antibiotic you were on for your kidney Bactrim or TMP/SMX (trimethoprim/ sulfamethoxazole) or was it something else like nitrofurantoin (macrodantin)?

    I'm asking because in HIV, when the CD4 count goes below 200, people get put on Bactrim to help prevent infections from a lung parasite called PCP and I'm wondering if you inadvertently being on an antibiotic for six years helped prevent you from getting too many infections.

    Also, were you on any conventional antivirals (e.g. acyclovir)?


  12. mbofov

    mbofov Active Member

    another avenue you might want to explore is low-dose naltrexone. Here's a link which explains how it works: http://www.lowdosenaltrexone.org/#How_does_LDN_work_

    It has been shown to increase Tcell counts in some AIDS patients.

    Also, I don't know why a background in biology would preclude learning about liver toxicity and liver cleansing - it seems they would go hand in hand! Six years ago I did a liver detox under the supervision of a chiropractor who did muscle testing. Prior to doing the detox, one glass of wine would make me sick for an entire day and 2 glasses would wipe me out for 3 days. I just have to wonder about all the alcohol intolerance associated with CFS - if in reality it's people's livers being overwhelmed with toxins.

    Anyways, back to 6 years ago, in addition to alcohol intolerance, my digestion in general was just quite screwed up, I couldn't eat till the afternoon, felt tired, sick, fluish, etc. Muscle testing indicated my liver was overloaded wtih toxins (in part from a job I'd had when 19 with heavy exposure to acetone). I did the liver detox which was geared to me, using Parotid PMG from STandard Process and Cholacol II from SP as well (has betonite clay). It was rough, I felt crappy for an entire month but stuck it out, and ever since my liver has been much much better. I can drink a couple of glasses of wine now and not get sick, my digestion is overall much improved. I also take milk thistle every day and digestive enzymes and hydrochloric acid.

    I can't recommend muscle testing highly enough, when done by a competent practitioner. I've seen 3 or 4 people who do it, and one was no good. He didn't know what he was doing. But overall it's helped me a lot, particularly when the regular docs just sort of looked at me like I was nuts. They didn't know what to do. I've posted several times that a good way to find someone who does this is to call the Standard Process customer service line (google them) and they will give you a list of practitioners in your area who buy their products.

  13. RunningAntelope

    RunningAntelope New Member

    Mary, this is how I got my start as well... the first "effective" treatment I ever received after trying various other drugs, anti-fungals, and anti-depressants and multiple consults with allopathic physicians, most of them useless. I saw that a chiropractor using applied kinesiology had helped my wife tremendously, and, even though I didn't "believe" in that sort of thing, by God, what did I have to lose but a little time and money? And it did help, greatly. In fact, this applied kinesiologist was the first person to ever tell me that my heart meridian was weak (despite consults with multiple cardiologists, one a sub-specialist in electrophysiology) and my HPA axis was "screwed up," before I solicited the help of one Dr. Cheney that is, who is the only allopathic physician to ever diagnose diastolic dysfunction with a very sensitive Vivid 7 doppler echo and to tell me that my HPA axis is "reversed" as a compensatory mechanism.

    And wouldn't you know it, somewhat complemented and reinforced by Dr. Kenny DeMeilier's H2S/gut work coming out of Belgium, Cheney is big on addressing gut issues (the gut is your brain in a sense and has many neurotransmitter receptors), much of your immune system resides in your gut, and digestion and liver energy pathways are compromised.

    Denis, Dr. Cheney also recommends goat kefir, not regular dairy, and kefir, with all of its live cultures, is a powerful gut and immune modulator.
  14. mbofov

    mbofov Active Member

    Interesting you had a similar positive experience with applied kinesiology. When I first tried it (several years before I did the liver detox), I stood to lose $50 - this was after being sick for 6 or 7 years with NO help whatsoever from regular docs. So I gambled - best $50 I ever spent. And if it hadn't worked, ok, $50 down the drain. Big whoop. I was desperate. The same chiro helped me with weak adrenals and several other digestive issues, got me taking digestive enzymes with hydrochloric acid. I know I would have been much worse off without him. He also found a weakness in my heart (later confirmed by impedance cardiography testing)

    Interesting also about the goat kefir - I've started making my own kefir from powdered goat's milk about 5 or 6 weeks ago (can't remember exactly), I can't afford fresh goat milk. Anyways, it tastes okay, muscle testing indicates it's very good for me. I'm doing it for gut health and trying to boost my immune system.

    If anyone wants to make their own kefir, I highly recommend kefirlady.com - she sent very health kefir grains with very good instructions and she responds promptly to e-mails.

  15. spacee

    spacee Member

    After a day like today, I am ready to try Cheney or Lapp (ampligen) but it might pass. I am pretty sure I have a gastric ulcer after ibuprophen use. I had a pretty good two days last week..so.

    Denis. I was given Cipro to take after intimate activity. And,
    I have tried several antivirals to no avail...no response at all. Acyclovir, Famvir and Valtrex. The Marshall Protocol (which some people have had terrible responses too) was the only thing that caused a feeling that something was dying off. That
    was addressing mycos, which caused me to buy the Tranfer Factor for mycos.

    May I ask. Does anyone here have any experience with zappers or such things? Mikie likes hers by Hulda ClarK (RIP).

    Some claim to kill HIV in 5 months. As you know, we are willing to try things that we don't think has a chance of working. If it were to really kill HIV, then XMRV would be likely but...that is IF it kills HIV.

    Anyone got an opinon?