Need Help Interpreting Labs: Neutropenia, EBV, other infections. Docs calling it Anxiety/Depression.

[Pyrrhus]

Also, I only really started feeling brain fog when I was in my early twenties. If there were a genetic problem, would that most likely have shown up earlier? Or are there some genetic issues that manifest symptoms only as an adult?

Serious genetic syndromes can become apparent soon after birth, but there are lots of genetic, in utero, or childhood-acquired conditions that don't become apparent until after childhood.

Also randomly: I actually took Augmentin recently for what we thought was a growing sinus infection, and woke up with hives for the next several days. At the time we thought this was a newly developed penicillin allergy (I had taken Augmentin many times before), but now I wonder if this was actually a herx die-off? Can that present as hives?

I don't know if a Herxheimer reaction could result in itchy, raised hives. But it can result in non-itchy, flat red dots/blotches around the body. (which are not hives)

Hope this helps.

 

[sometexan84]

I have managed to dig up an old lab from 25 years ago with the same three elevated EBV values (and negative IGM).

EBV EA-D (IGG): 110 (<=110 negative, 111-119 equivocal, >=120 positive)
EBV EBNA (IGG): 262 (<56 negative, >=56 positive)
EBV VCA Ab (IGG): >= 7.00 (<0.9 negative, 0.91-0.99 equivocal, >=1 positive)

I've never seen reference ranges like this. I don't know. If these are really from 25 yrs ago, and given the odd values, it's hard to look at these w/ confidence.

That said, your current EA is positive, albeit a low positive. Positive EA almost always means it is actively replicating. The only way to know for sure is to re-test later and see if EA has gone up or gone down. And it's probably wise to wait at least 2 months before re-testing. The below video does the best job at describing EBV antibody titers that I've seen.

I used to get sinus infections CONSTANTLY, and still even when I'm feeling relatively okay I occasionally suddenly get a massive leakage with yellow stuff from my sinuses that looks like that nasty fake butter they have at movie theaters. They found a maxillary sinus cyst and said I had chronic sinusitis

So did I. In 2017, I started get constant sinus infections. Thought I had chronic sinusitis. ENT said otherwise and that there was nothing structurally wrong. I did not have a sinus cyst or anything like that.

This was before I knew what ME/CFS was. Anyway, I started getting tired all the time. I was convinced that these sinus infections were causing this fatigue I was feeling. So I actually ended up getting multiple corticosteroid shots to treat my sinus issues. Little did I know I was creating CFS.

Wasn't til WAY later (like, as recently as 2 months ago) that I learned what really happened. The sinus stuff was from an acute enterovirus infection. The corticosteroid shots (perhaps in addition to an extended period of high stress preceding these events) turned it into a chronically active enterovirus infection.

• Enterovirus can cause runny and stuffy nose, sinus congestion and pain
  • Corticosteroid shots can exacerbate enterovirus infections. Acute infection + corticosteroids = ME/CFS.
  • Corticosteroids suppress Th1 antiviral/intracellular immune response, and suppresses T-cell function
  • Acute infection symptoms can include Rhinosinusitis

This now chronic enterovirus infection reduced Th1 (cellular immunity down, humoral immunity up), and reduced Immune surveillance, and led to CD8+ T cells deficiency.

So, now major Th2 dominance, and temporary Immunodeficiency from unbalance, led to Re-Activation of EBV.
Then other stuff happened. I'm making this post too long, haha.

Moral: DO NOT take corticosteroid shots for sinus

see if religiously using nasal sprays will help??

Haha, yea, I did this too. And Netti Pot. Tons and tons of netti pot rinses. Those were the days.

I don't exactly expect many here to either, but I honestly don't know who else to turn to.

Sorry, I really don't know.

 

[sometexan84]

hard to tell whether the chicken or the egg comes first. Does stress/being overworked lead to HHV6 reactivation, which leads to the SITH1 and depression? Or, does HHV6 reactivation lead to feeling stressed/overworked/depression?

Yes to both.
https://hhv-6foundation.org/cogniti...-by-a-latent-but-neurovirulent-hhv-6b-protein
https://hhv-6foundation.org/patients

Psychological stress messes w/ your immune system and can aid in re-activation of viruses. And chronic stress can make everything worse. It's pretty easy to get stressed out when you have ME/CFS. But it's up to you whether you allow symptoms to contribute to stress.

There was actually an interesting study showing a strong correlation between noted stress prior to ME/CFS. I actually fit right in w/ this group, literally major stress 1 yr prior.
Major psychological chronic stress often seen in the year prior to developing ME/CFS

But the chicken/egg thing... That is on point. For like, all of CFS.

 

[chadwick45]

You have to look at your ME history. If you were stressed out and/or on steroids and then got virally infected that's why. On the other hand, stress alone doesn't cause depression.

I'm not a big fan of the antiviral drugs that stop replication. At best you can inhibit them but the cells are still infected and they have a low recovery rate (30%).

Hmm okay, I assumed antivirals were the main approach people were going with here. I guess I have a lot to learn. I just read the theory of how EBV might actually keep HHV-6 in check, so maybe I have to be careful about wiping one thing out and not the other? This is all so confusing.

RE: My history, I got extremely sick for a few months at the end of college with what felt like an endless cold (I had already had EBV antibodies by then so I don't think it was mono?). Then I started getting the first sinus infections in my life, and got maybe 4 or 5 colds in the next 9 months that all lead to sinus infections and antibiotics. The school hospital would refuse to give me antibiotics until I waited to see if it would go away in the next 10 days, so obviously by the end of that my head would feel like it was going to explode-- painful to the touch, fever, all of that crap. The brain fog started shortly after that, followed by progressive fatigue, feeling slow and trouble finding words etc. I had sinus infections on and off over the next 10 years, and was diagnosed with chronic sinusitis and a cyst, but honestly haven't had any serious sinus infections in the last few years, although I will still occasionally get a massive drainage and have pretty ongoing postnasal drip.

IMNV-11 is a proprietary herbal mixture with mostly Peu D'Arco plus other mostly irrelevant herbs. It is formulated by a naturopath who has published no research. Judging from your labs and depression it sounds like you're dealing with HHV6 and EBV. I agree with @Hip that you need to test for the other ME viruses (coxsackie and CMV). The pneumonia is a secondary, it's presence probably indicates that EBV has impaired your immune system by blocking antibody generation and attachment. I doubt the IMNV works or you would see research on it but ME docs often will try anything that sounds plausible out of desperation and to run up the office visits. EBV also blocks apoptosis at the nucleus by upregulating Nf-kb so it is difficult to kill. You may get some partial apoptosis but my guess is that you'll still be sick and depressed.

I have and am treating for these viruses so you may want to look over my Self-Experimenting blog.

By the way, high concentration CBD oil sublingual is a good depression treament if you don't like the meds. This one is very good. https://madebyhemp.com/product/hemp-oil-concentrate/

Thanks for the input. The only thing that brought my hopes up is that this contains skullcap, and the ONE time I felt my brain fog clear for about 30 minutes I had started a regimen with some mixed herbal tea that had skullcap and a few other things. My lovely psychiatrist at the time told me to get off of all of that so we can get a clear idea of how a new antidepressant would affect me . So how do most people treat EBV if antivirals and herbs don't really help much?

I will check out the CBD and look at your blog!

 

[chadwick45]

As @sometexan84 points out above, although your Chlamydia pneumoniae titers although not very high, Dr Chia has treated patients with antibiotic titers like yours. Dr Chia's Treatment of Cpn just involves antibiotic treatment for a month or two. Dr Chia uses azithromycin, which is a reasonably cheap treatment.

So this the low-hanging fruit, and it's possible you might get gains in health from treating Cpn. So something to bring up with your doctor.



If you look at the criteria for diagnosing chronic active infection in ME/CFS in this mini roadmap document, Dr Lerner's criteria for active infection are high VCA IgM and/or high EA IgG diffuse. So by Lerner's criteria it does not look like you have active EBV.



The benefit of testing for enterovirus is that there are some treatment which work (although they do not work for everyone — you have to be lucky for them to work for you). These treatments include oxymatrine (the main one), and also Epivir and tenofovir.

Though because oxymatrine is a supplement available without prescription, if you like, you can try this even without being tested for enterovirus (this is what I did, because I was not able to find an enterovirus test in Europe until much later). The ARUP enterovirus tests are very expensive.

I had high EA IgG diffuse antibodies, so should that qualify (if Dr. Lerner is saying high IgM and/or high EA IgG diffuse)? The EA-D wasn't 16x the normal range though, so I could be wrong.

I really wish my doc were more open to trying one of these other treatments. I'm a bit nervous to add this to the mix of other stuff without telling anyone though... maybe I will run it by him while I'm trying the other treatment.

I can't seem to find much info on the risks and side effects of oxymatrine-- does anyone know? I'm open to almost anything if time and money is the only risk involved.

 

[chadwick45]

Guinea pig. I don't like doctors like that. Runs up the office visits @ $200 each.

Chia says symptoms of coxsackie are abdominal pain are three points. McBurney's mid and left. I had McBurney's for 11 yrs. Got it about 50% improved so far using herbals.

Hmm, I THINK I found the McBurney's point lol. It feels kinda funny but isn't particularly painful. Where exactly are the mid and left points? (Or if you just have a link talking about this because I can't seem to find it.) Thanks!

 

[chadwick45]

Serious genetic syndromes can become apparent soon after birth, but there are lots of genetic, in utero, or childhood-acquired conditions that don't become apparent until after childhood.



I don't know if a Herxheimer reaction could result in itchy, raised hives. But it can result in non-itchy, flat red dots/blotches around the body. (which are not hives)

Hope this helps.

Thanks, I'll keep genetic causes in mind! I guess that might not have been Herx then. It was so itchy that it woke me up in the middle of the night.

 

[chadwick45]

I've never seen reference ranges like this. I don't know. If these are really from 25 yrs ago, and given the odd values, it's hard to look at these w/ confidence.

That said, your current EA is positive, albeit a low positive. Positive EA almost always means it is actively replicating. The only way to know for sure is to re-test later and see if EA has gone up or gone down. And it's probably wise to wait at least 2 months before re-testing. The below video does the best job at describing EBV antibody titers that I've seen.

So did I. In 2017, I started get constant sinus infections. Thought I had chronic sinusitis. ENT said otherwise and that there was nothing structurally wrong. I did not have a sinus cyst or anything like that.

This was before I knew what ME/CFS was. Anyway, I started getting tired all the time. I was convinced that these sinus infections were causing this fatigue I was feeling. So I actually ended up getting multiple corticosteroid shots to treat my sinus issues. Little did I know I was creating CFS.

Wasn't til WAY later (like, as recently as 2 months ago) that I learned what really happened. The sinus stuff was from an acute enterovirus infection. The corticosteroid shots (perhaps in addition to an extended period of high stress preceding these events) turned it into a chronically active enterovirus infection.

• Enterovirus can cause runny and stuffy nose, sinus congestion and pain
  • Corticosteroid shots can exacerbate enterovirus infections. Acute infection + corticosteroids = ME/CFS.
  • Corticosteroids suppress Th1 antiviral/intracellular immune response, and suppresses T-cell function
  • Acute infection symptoms can include Rhinosinusitis

This now chronic enterovirus infection reduced Th1 (cellular immunity down, humoral immunity up), and reduced Immune surveillance, and led to CD8+ T cells deficiency.

So, now major Th2 dominance, and temporary Immunodeficiency from unbalance, led to Re-Activation of EBV.
Then other stuff happened. I'm making this post too long, haha.

Moral: DO NOT take corticosteroid shots for sinus


Haha, yea, I did this too. And Netti Pot. Tons and tons of netti pot rinses. Those were the days.


Sorry, I really don't know.

Yeah, sorry about the antiquated lab hah. I don't even remember how sick I was it was so long ago, so I'm not sure it's even useful. At the very least, I either had mono at that time or had a past infection already by then. I haven't gotten a clear picture of what percent of totally healthy people have elevated EA-D for 25 years, but I imagine it's extremely low.

It's a bit of a bummer to know that the sinus treatments weren't very helpful and actually made things worse, but it's also a relief to learn from your experience. However I think most of mine were bacterial because antibiotics usually wiped them out. I also started to get them cultured, which confirmed the bacteria. One reported positive for enterobacter aerogenes, which was kind of surprising because from what I read it sounds like that tends to only happen to immunocompromised people in the hospital on ventilators and stuff.

RE: the chicken/egg debate, I've been doing everything I can to eliminate stress. I've been on leave from work for several months, eating healthy and exercising, meditating almost every day, doing cognitive behavioral therapy twice a week, analyzing thought patterns, taking supplements, no alcohol.. the list goes on and on. Somehow I still have this heaviness in my head and often feel like laying down. It seems very plausible to me that stress and infection could spin out of control in a feedback loop, but I'm having a hard time pinning this on stress at the moment.

 

[chadwick45]

Crap! I just realized I posted that I tested negative for the Lyme western blot. Im looking over it again and it was actually positive for IGM (41, 23 bands). Why the crap did my doctors order this test and then do nothing about it later??

I actually repeated the Western blot last year and every band came back negative. So now I don’t know what to think, but a new doctor I’m seeing thinks this is Lyme all the way and that the recent test was a false negative. I’m scared about how polarizing that diagnosis is in the medical community, but I’m admittedly also desperate...

 

[gbells]

Crap! I just realized I posted that I tested negative for the Lyme western blot. Im looking over it again and it was actually positive for IGM (41, 23 bands). Why the crap did my doctors order this test and then do nothing about it later??

I actually repeated the Western blot last year and every band came back negative. So now I don’t know what to think, but a new doctor I’m seeing thinks this is Lyme all the way and that the recent test was a false negative. I’m scared about how polarizing that diagnosis is in the medical community, but I’m admittedly also desperate...

Definitely treat the lyme but you're still stuck with the HHV6 and EBV so I don't expect it to resolve the ME.

 

[chadwick45]

Definitely treat the lyme but you're still stuck with the HHV6 and EBV so I don't expect it to resolve the ME.

Thanks for the quick reply. So does this look like a legit positive test or could it have been a false positive?

The doctor‘s take is that Lyme could be suppressing my immune system which is opening the door for these other infections to flourish. But if I recall correctly, some people say the same about EBV and M. Pneumoniae...

 

[Pyrrhus]

The doctor‘s take is that Lyme could be suppressing my immune system which is opening the door for these other infections to flourish. But if I recall correctly, some people say the same about EBV and M. Pneumoniae...

Yeah, that's probably an argument that could be made about many different infections...

 

[max_yazhbin]

for the thyroid and goiter, what actual labs did you get including the autoimmune ones you mentioned?

 

[max_yazhbin]

osha root cured me of my lyme disease