Undiagnosed Immunosuppression

[undiagnosed]

@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.

 

[Jammy88]

Hello @undiagnosed , how are you currently feeling ? Any improvements in your general health status ? What’s your level of functionality ?

Best
-Matteo

 

[Mrunknown]

Hi! I understand. I also havent had any oppurtunistic infections. I also have the issues with dry mouth and sort of white discoloration of my tongue. At first I thought it Maybe was fungal but it doesnt fit and it comes and goes. I think its due to dry mouth. Nobody knows What causes ICL and attemps have bin made to find a responsible pathogen. Its mostly case based. Those people that have bin diagnosed with ICL. One wonders, if its caused by a pathogen, How long time they have bin infected before they ens up with oppurtunistic infections, autoimmune diseases and cancers. One also wonders how many have ICL without ever finding out and having any symptoms at all. I would be less worried if I wasnt convinced my wife also now has the same infection(chronic cough back and forth, mouth issue and so on) She thinks Iam crazy when it comes to this so its not something we talk about really. Are you planning any further tests and/or looking more in to all this? In direct contact with anyone else in the same spot? Or any any researchers within the field? Best regards.

 

[undiagnosed]

Hey @Jammy88, I'm doing ok, how about you? Health status hasn't really changed. I'm able to do everything I need to do to live an independent life. However, I am being held back a number of ways by not having a resolution to all of this. Just living day to day and uncertain about the future.

 

[undiagnosed]

@Mrunknown Don't have any definitive plans for tests or anything at the moment. Might try to find a doctor since I haven't been to one in a long time and do the standard physical/CBC and go from there. I'm not in direct contact with anyone else. I tried working with researchers years ago but it never lead anywhere. Sorry I don't really have any good advice.

 

[Mrunknown]

Hi! Yeah I understand ur sentiment. There is no straight road forward and one loses ”steam” after years of coming nowhere. Ive seen you have also read omars thread and also the long thread that started with the chinese person from many years back. Novel virus ? Mutations of enterovirus? Combination of genes and reactivation of different chronic infections , a cocktail of shit? Who knows. I also somehow cant stop thinking that our own mental state and chronic stress/anxiety Maybe worsens everything substantially. I dont know. Dont either know exactly How To move forward. From a logic perspective a lot of shit doesnt make sense and we talk To people online after a long search that we feel experience somewhat same symptoms but we dont even know if we have the same thing and we Are very biased and also trying To interpret very specific complex medical information that in reality takes years of studies and training to actually really understand What it means and put the pieces of information in the right context.

 

[Muon]

Low IL-17 can make one susceptible to fungal infections.

 

[Jammy88]

Hey @Jammy88, I'm doing ok, how about you? Health status hasn't really changed. I'm able to do everything I need to do to live an independent life. However, I am being held back a number of ways by not having a resolution to all of this. Just living day to day and uncertain about the future.

Hey @undiagnosed , yes I can totally relate with what you say . I’m 7 years in and I haven’t found any solution either . I can live , but I have ongoing issues and the stress and depression coming along with that are undeniable . It’s so tough to look at the future with some hope. Just trying to hang in there

 

[helios]

Your blood work doesn't include Natural Killer cell function or NK cell cytotoxicity which is as close biomarker of ME as one can get.

Best of luck, @undiagnosed it's sure not easy.

Yes I'd be curious to see his NK cell reading. I showed up with immunosuppression, and was diagnosed with Lymphopenia or more precisely Idiopathic Lymphopenia. I don't buy the idiopathic element as to me there is a cause, they just don't know or have much interest in finding as its not a fatal condition. I have had HIV tests with each doctor I see, and as expected by me they are negative.

My NK cell levels are below normal range. Unlike someone with HIV I hardly ever get the cold or flu. My IgE are at hyper levels but I'm not stereotypical HIES which is a fairly rare condition. I feel one part of my immune system (Th2) is compensating for the other (Th1). I have suffered with gut issues for many years and for the last 12 yrs have shown positive for parasite infection and have not been able to eradicate one type in all that time and parasites are often shown to be responsible for immunosuppression and suspect it might be in my case.

Undiagnosed said he has persistent fungal infections but did not list gut issues or weight loss as a symptom he is suffering so don't think that is his issue.
* Damn just saw this thread is 5 yrs old

 

[Jammy88]

Have you guys also experienced fast aging and wasting in face ? My face is hardly comparable to the one I had 7 years ago and aged so fast after the undiagnosed infection I got.

As per the natural killer cells, I remember I had my NK tested even prior to that time and they were already low indeed. EBV had already caused me some suffering , then the final KO came with this other infection I got in 2014

 

[pattismith]

@helios
do you have both low CD4 and low CD8 ?

I have low CD8 (T lymphocyte) and zero MBL level (this is innate immunity).

Cellular adaptative immunity (T and B lymphocyte) is compensating for any defect in the innate immunity (complement system, NK cells, neutrophils, ...)

Post infectious syndrome comes easily if your innate immune system is weak and if you have some associated imbalance in your lymphocyte adaptative response.

@undiagnosed seems to have some defect with his adaptative immunity, and his Complements C4 and C3 are at the low limit, it would be nice to have more information on MBL (deficiency is quite common), and NK cells.

 

[undiagnosed]

@helios I haven't had any NK function of cytotoxicity tests. I did have a flow cytometry and peripheral blood film years ago. Remarks from the flow cytometry was high normal NK cells, likely reactive, and high normal polyclonal B-cells. From the blood film, a few lymphocytes with irregular nuclear contours (8% atypical).

 

[undiagnosed]

@Jammy88 I've had noticeable fat loss on my face particularly around the nasolabial folds and temple/outer eye area. It's something I'm self-conscious about.

 

[helios]

Have you guys also experienced fast aging and wasting in face ? My face is hardly comparable to the one I had 7 years ago and aged so fast after the undiagnosed infection I got.

As per the natural killer cells, I remember I had my NK tested even prior to that time and they were already low indeed. EBV had already caused me some suffering , then the final KO came with this other infection I got in 2014

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.

 

[helios]

@helios
do you have both low CD4 and low CD8 ?

Yes both were at the bottom of the range. With HIV/AIDS there is a ratio CD4:CD8 and for me ratio was around the other way, but doctors still insisted on an AIDS test.

 

[pattismith]

Yes both were at the bottom of the range. With HIV/AIDS there is a ratio CD4:CD8 and for me ratio was around the other way, but doctors still insisted on an AIDS test.

CD4/CD8 is low in HIV (less than 1)... Do you mean you have a high ratio?

 

[helios]

CD4/CD8 is low in HIV (less than 1)... Do you mean you have a high ratio?

Both CD4 and CD8 readings were quite low, but as you say for HIV its the CD4/CD8 ratio that is critical and I did not have a high reading but also didn't have a low ratio rather it was over 1 (I thought). I wasn't given medication/treatment as I was not coming down sick with exploitive infections all the time, just ongoing CFS/IBS.

 

[undiagnosed]

In case anyone is interested, I recently had a CD4/CD8 ratio done. It had been around 3 years since the last one. I stopped bothering because it wasn't getting me anywhere but I was curious. Don't think there's really anything actionable based on the new results and history but some trends seem to be holding. Both CD4 and CD8 percents have dropped roughly 10% over the 5+ years I've taken measurements based off a linear model. CD4/CD8 ratio is relatively stable because CD4 and CD8 are dropping at similar rates. Absolute CD4 and CD8 are relatively stable because the total lymphocytes seem to be trending up, offsetting the drops in percentage.

 

[georgina699]

In case anyone is interested, I recently had a CD4/CD8 ratio done. It had been around 3 years since the last one. I stopped bothering because it wasn't getting me anywhere but I was curious. Don't think there's really anything actionable based on the new results and history but some trends seem to be holding. Both CD4 and CD8 percents have dropped roughly 10% over the 5+ years I've taken measurements based off a linear model. CD4/CD8 ratio is relatively stable because CD4 and CD8 are dropping at similar rates. Absolute CD4 and CD8 are relatively stable because the total lymphocytes seem to be trending up, offsetting the drops in percentage.

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Who keeps ordering all those tests to you? (I'm trying to learn what to tell my PCP to get my immune system checked)

 

[undiagnosed]

@georgina699 In the US there are online lab services that work with Labcorp or Quest Diagnostics that you can use. You won't be able to order anything you want, just what they offer unless they can get something added for you. You pick the test and they'll provide you a lab order from a doctor without any visit required. Not sure about insurance, I pay out of pocket. Some states don't allow it, but most do.