• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Undiagnosed Immunosuppression

Hello everyone,

After following this thread for a while, i thought i'd chime in with my own issues since there are a lot of similarities here with my own case. In fact, i have always had rather low WBC (between 3000 and 4000 leucocytes usually) for around 10 years now, never figured out why, but it didn't really bother me too much in daily life so i let it slide. Fast forward to today and i am knee deep in plenty of issues, a lot of which seem auto-immune mediated but without a fixed diagnosis (positive ANA, negative ENA, Myasthenia Gravis antibodies which only tell me i got MG but don't explain the rest at all, dry mouth and eyes issues but no Sjogrens ABs and reactivated EBV constantly with corresponding symptoms like hot flashes, joint pains and ton of other stuff that can either be EBV or autoimmune symptoms).

Had 2 flux cytometries done over the last 2 years and turns out i have a CD4 lymphocytopenia mainly (around 300 cells/ml) with an inverted CD4/CD8 ratio hovering at 1 or now even under 1 since the last test.

Now, since doctors have no clue about what could be causing this, my 3 main theories right now are:

1) an autoimmune disease as the origin of the CD4 deficiency, sapping them, something like occult/sub-clinical lupus or maybe other ABs that haven't been detected yet
2) EBV just progressively sapping my CD4s and depleting them over the years with a pinch of extreme stress added to the mix since i've had the most stressful years of my life these last 5 years combined and we know stress depletes T cells (though not solely and not in this quantity but as a contributor). In this case an antiviral like Valtrex should make a difference but no doctor has agreed to this so far.
3) a genetic / innate deficiency which manifested around 10 years ago since before that my WBC counts were totally normal so i doubt any T cell deficiency was present then. I should mention i also have EDS which does not necessarily have a strong correlation with a weakened immune system, but there ARE a few sparse reports of people reporting similar issues without going into detail unfortunately.

Anyway, would love to hear feedback if any of you get anywhere with this issue, as it's really hard psychologically and mentally to live with an issue like this and no specialist anywhere really knows what to do with you :(
@Mrunknown I've seen the Human RNA Rumor Viruses paper before, good reference and interesting. As far as autoimmune, was tested for a number of things but symptom wise, Sjogren's fit because of dry mouth but more rare in males and test was negative. No other autoimmune disease was diagnosed either. Haven't had any opportunistic infections diagnosed. Various symptoms have been acknowledged and medications offered. For example, was offered some saliva stimulating medication for dry mouth but it came with risks and didn't address the root cause so I opted to just use xylitol lozenges instead.
any news? how are you doing ?
I have something similar
@georgina699 Nos EUA, existem serviços de laboratório online que funcionam com Labcorp ou Quest Diagnostics que você pode usar. Você não poderá pedir o que quiser, apenas o que eles oferecem, a menos que eles possam adicionar algo para você. Você escolhe o teste e eles fornecerão um pedido de laboratório de um médico sem necessidade de visita. Não tenho certeza sobre o seguro, eu pago do próprio bolso. Alguns estados não permitem, mas a maioria sim.
Hello you are ok?


Senior Member
I did at one point back in approx 2011-12 I was kind of shocked and had gone through a tough patch health wise and was looking into fillers but then tried a treatment for Lyme disease and had some awesome health for a while, and the lipodystrophy look faded in me thankfully, but was/am still thin in the face. If someone has blood levels like that of a HIV sufferer then they could well also suffer from lipodystophy. The HIV sufferers however can get subsidized treatment but those who don't have that diagnosis have to pay full price for the facial filler treatment which is tough for anyone suffering from ME.
What Lyme treatment did you take that made your lipodystrophy improve? I have the same issues as many in this thread (have not done a lymphocyte subset test though). I rarely get sick and my face has rapidly sunken in over the past 8 years.
Curious what @undiagnosed or anybody else might think of some recent IgG findings. G-A-M-E all within normal range but IgG subclass 1,2,3 are below threshold and IgG4 is elevated. Also, a non responder to streptococcus (pneumo) vaccine. Appreciate your thoughts. All they really did was run an HIV test after these results, which came back negative.

G- 775 (600-1600)
A- 265 (40-375)
M-65 (30-190)
E- 20 (0-130)

IgG subclass:
1- 360 (382-929)
2- 184 (241-700)
3- 16 (22-178)
4- 103 (4-86)
Last edited:


Senior Member
United States
Hi @Onezk, currently working on getting some more sequencing done. Still working on the logistics but I'll update here when I get some data back and analyzed. Other than that, hanging in there. How about you?
@undiagnosed there has been talk here of vitamin B1 deficiency and CFS. As has been noted in this thread the HIV tests are very accurate now. What can cause IgG1 deficiency is B12 deficiency and or Folate deficiency. As in malnutrition... This can happen from poor diet or drinking booze, but can also happen from exocrine pancreatic insufficiency where the foods are not being broken down enough in the digestive tract. Or it can happen from conditions like Crohn's disease or other irritible bowel disorders not allowing certain nutrients to be absorbed by the digestive tract. B12 is notoriously difficult to absorb from vitamin pills, and sublingual dosing is probably better. Look for sublingual that have at least 1000mcg of B12 and also B6 and Folic Acid. All those B vitamins work best in concert with each other. Look into additional B1 supplementation (thiamine). Best to take the sublingual B12 between meals on an empty stomach for best absorption.. Can be a tablet that dissolves under the tongue or liquid from an eye dropper.