Help with Immune Testing Results

Discussion in 'The Best Laboratories & Diagnostic Tests' started by Karen444, Jul 30, 2013.

  1. Karen444

    Karen444 Member

    Hi all, I am new. Been challenged by ME/CFS since 2007, I work full time as an RN to provide for my family and I can't seem to get ahead...I"m slowly declining in health and wellness no matter what I do. I try yoga, rest periods, eating right, supplements like crazy...I'm on Immunopad, Cordyceps, Hydrocort, MilAdregen, Vit C, Vit D, MVI, Omega 3, Probiotics, Enzymes. My Lymphocyte subset is challenged-results this week...worse than 3 months ago... CD56 3 (norm 5-30), CD19 Absoulte 569 (norm 71-567) CD3 High Norm at 1990 (norm 592-1992) and CD56 Absoulte 70 (norm 80-597) and HHV6 titers >1280. Haven't been feeling so good, still working full time and trying to find a way to shift my life for more rest. What happens to me if this continues to get worse???
  2. ladybugmandy

    ladybugmandy Member

    hi Karen. since you have not had the disease for too long, I think your chances of improving or even recovering are very good. I have had the disease since 1993. for many, it is progressive and sometimes fatal if left untreated. I have been to several specialists in the USA and spent huge amounts of money trying all kinds of treatments. my advice is to take time off work (I don't think you have a choice) and go to Belgium to see professor Kenny demeirleir. in my opinion, there is really no point going to anyone else, since he is 10 yrs ahead of most other doctors.
    best of luck
    xox
  3. Jean Markale

    Jean Markale Member

    You mean the Kenny Demeirleir whose resignation the National CFIDS Foundation recently called for?
    http://www.ncf-net.org/forum/CallForResignation.htm
  4. tooks

    tooks Member


    I'd second that. His testing is very thorough, his fees are low, and his care is excellent. Well worth traveling for. The link quoted above is old and is the result of miscommunication, misunderstanding, IMO.
  5. Karen444

    Karen444 Member

    Hi...thank you for your responses. Unfortunately, at this moment I do not have the funds available to go to Belgium. I've been a patient at Woodlands Healing Reserearch in Quakertown PA and my Dr. has a good amount of experience with CFIDS. At this point I'm considering Valcyte, if that doesn't work then I'll have to look at work reduction or something. I was on unemployment for awhile due to company downsizing in 2010 and 2011 and within 6 months I was feeling the best I ever did and my titers dropped to 320. This is disheartening....dammed if I work and dammed if I don't (financially). At some point I'll have to bite the bullet and see what I can do to work less, yet family needs make it hard. This is why I play the lottery. :)
    I try to stay positive...so important. Thanks.
  6. ladybugmandy

    ladybugmandy Member

    hi Karen. I think you could do the Belgium trip for $4000 give or take a few hundred. that includes testing, hotel, doc fees, etc.
  7. tooks

    tooks Member


    True and since airfare is a big bite, credit card or frequent flier miles help a lot. The biggest expense is lab fees and they are less than in the US. Most of the labs would not be covered by US insurance anyway--it you did them in the US, that is.
  8. mbofov

    mbofov Member


    oops - somehow I got my reply in the quote, will redo it -

    Ladybugmandy, did you see Dr. DeMeirleir? If so, what treatment did you receive and what progress did you make with him? Thanks!

    Mary
  9. mbofov

    mbofov Member

    Hi Karen - I totally understand your situation. I have a couple of suggestions you might look into, that have helped me.

    I see you're taking hydrocort, a steroid, I presume for your adrenals. I've read that long-term use is not good, and that cortisone doesn't heal the adrenals but rather pushes them to work harder, ending up in further exhaustion. My chiropractor gave me an adrenal glandular called Drenatrophin PMG by Standard Process when my adrenals were wiped out. He said this would support the adrenals, give them a rest, so they could heal, and it worked really well, my energy started to pick up within a couple of days. He did muscle testing to determine dosage and what was appropriate for me and I didn't care, because I had been sick for several years with no help at all from doctors so had nothing to lose. Okay, I see you are taking an adrenal glandular, the Mil Adregen. I just would be careful with the hydrocort. And you might consider muscle testing - what do you have to lose ? It can pick up things regular doctors don't.

    You're taking enzymes for digestion. You might very well need hydrochloric acid in addition. Years ago my digestion was all screwed up and enzymes alone were insufficient. I had low stomach acid. Taking HCL with each meal (especially high protein meals or meals with meat) made all the difference. One doctor told me to take it up to tolerance - to where I started to feel "acidy". Anyways, it helped get my digestion back on track. And, if you have insufficient stomach acid, then all the supps you're taking won't work the way they're supposed to. My chiro told I had to get my digestion sorted out first before anything else would work.

    Check your MCV on your CBC. If it is in the normal range but high (e.g., on mine, the top of the normal range was around 100 and my numbers were 96, 97, 98 for several years), it can indicate a B12 and/or folate deficiency (not folic acid). Folic acid is synthetic and there's a very common genetic trait which interferes with the conversion of folic acid into a form useable by the body. Folic acid can actually compete with folate for absorption, causing a deficiency and macrocytic anemia. I had been taking B12 for years and years, but my MCV was still high (though "normal") and finally one doctor mentioned it might be a problem. I did some research, found out about folate, started taking 800 mcg. of folate in the form of metafolin (Solgar makes a good one) and within a couple of days my energy picked up. It was amazing. Also, within a couple of days after that, I hit a brick wall, and realized my potassium levels had tanked. The folate was causing cells to heal and regenerate which greatly increased my need for potassium. I had read about this possibility in a thread on the Phoenix Rising board (see http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/)
    If I had not been aware of this eventuality, I would have stopped the folate, thinking I was reacting badly to it. I now take 400 mg. of potassium a day as a maintenance dose, though I had to temporarily work up to 1,000 mg. a day for a week or 2.

    Re all your immune system numbers - I don't have any info. However, my immune system has been compromised for many many years, fighting constant sinus infections. And recent blood work showed very low NK cell count. A few months ago I discovered Moducare - a combination of plant sterols and sterolins - and it's worked miracles. I don't get nearly as sick as I was. You can read on-line reviews about it. I don't know what effect it might have on your immune numbers, but you might check it out. And I had tried endless herbs and supplements trying to boost my immune system, and the Moducare is the first thing that has really helped.

    Finally, I'm going to see Dr. Chia in Torrance, CA, in a couple of months. He believes in an infectious basis for many CFS cases. I have seen his name mentioned in the same writing as Dr. DeMeirleir. (I couldn't afford to go to Belgium either [even if I could afford it, do not have the stamina - I can't work or anything]}. He's going to do some virus and immune testing on me and he may have further info. So you might be able to see him - you can google for more info.

    Good luck -

    Mary
  10. louisd

    louisd Member

    '. The nucleus is the 'headquarters' of the living cell, therefore the ANA can damage or destroy cells and tissues. If the ANA destroys the nucleus of the cell, the cell dies. If enough cells die, then the organ tissue dies.
    Some medications, infections, and other diseases can cause the test to be positive. A positive ANA is just one piece of the diagnosis puzzle. Neucleolar can give some indication of the particular condition to look for.