Does anyone here NOT have EBV, HHV-6, or CMV?

[EddieB]

Yes, and I accept payment in GNC Gift Certificates.

Deal.
I’m pretty sure I’ll have a rough time, as I already have digestive issues.

That’s exactly what one of my CFS friends mentioned to me actually. She seemed to think that there is a possibility that it has progressed so much that it may be in the tissues, so it’s not showing up on PCR. I don’t know how possible that is but it makes sense, however I would think that if I still test positive of the EBV tests, that I should test positive on PCR? I’m not sure, I’ve only ever had one PCR test done before.

Apparently this is the case with coxsackie virus. They sometimes find virus in biopsy but not in blood tests.

You mentioned earlier about pain.. Who knows. If the flu can make the whole body ache, I suppose this could too.

 

[EddieB]

Yeah that’s true. Do you know anything about the impact of EBV on our organs? I’m just curious cause around April when it got really bad I started having severe pain in my lower left back and all of MRIs and such are all clear. So, of course just like everything else they never figured out what it was and it hasn’t gotten any better.

And yes, I get pain in the same area when symptoms flare up. Kidney area, lower back, hips and the left thigh.

 

[sometexan84]

I already have digestive issues.

At the bare min, I'd def do a Leaky Gut (Intestinal Permeability) test >>>>> (Urine - Lactulose & Mannitol).

The digestive stuff is all interconnected w/ the EBV and CFS. That test above is widely used for diagnosing leaky gut.

 

[morgan_25]

Nope. I do not.

Kidney infection?

There's more people here on this forum with severe pain that would know. I never had much pain at all.

Okay may be another thread to start. I started looking up some of the immunodeficiencies that you mentioned earlier like the x linked lymphoproliferative syndrome, but I couldn’t find anything about a 1 and 2. But I mean, from what I have read that sounds like a big possibility. Is there a particular test for it?

 

[sometexan84]

Okay may be another thread to start. I started looking up some of the immunodeficiencies that you mentioned earlier like the x linked lymphoproliferative syndrome, but I couldn’t find anything about a 1 and 2. But I mean, from what I have read that sounds like a big possibility. Is there a particular test for it?

For starters, you def want to do Immunoglobulin test for IgE, IgG, IgM, IgA, maybe IgD as well. (IgE = T Cell DIsorder?)

 

[morgan_25]

Deal.
I’m pretty sure I’ll have a rough time, as I already have digestive issues.



Apparently this is the case with coxsackie virus. They sometimes find virus in biopsy but not in blood tests.

You mentioned earlier about pain.. Who knows. If the flu can make the whole body ache, I suppose this could too.

I have suffered from severe pain since my initial EBV illness when I was 14. For years I was told I had fibromyalgia, but according to some doctors there are trigger points for that which I don’t respond to. Excruciating pain, migraines, and exhaustion have been my biggest enemy when it comes to this illness.

 

[morgan_25]

And yes, I get pain in the same area when symptoms flare up. Kidney area, lower back, hips and the left thigh.

I am also suffering from sciatica now and it has moved to my right side as well. I still think my sacroiliac joint is a huge possibility, but the timing of when my illness got out of control seemed to be all too coincidental. It travels from like you said around the lower back to my hips, but also my pelvic and groin area. Have you had blood tests suggest that there is something going on with your kidneys? The only thing that ever showed up in my blood test was that my cortisol was high, which as you may know is what is made my your adrenal glands that sit on top of your kidneys. My doctor just gave me a steroid retested me, then my cortisol was low. That’s the only thing that’s ever shown up in my blood test suggesting something is going on with my organs.

 

[morgan_25]

For starters, you def want to do Immunoglobulin test for IgE, IgG, IgM, IgA, maybe IgD as well. (IgE = T Cell DIsorder?)

And the IgM and IgG is for EBV right? Or a different kind? If it’s the one for EBV you think it’s a good idea to get these retested?

 

[sometexan84]

My doctor just gave me a steroid retested me

Dude. Be careful on the steroid shots. Apparently, that can sometime increase the virulence in some cases. Like, I'm convinced that my CFS was initially caused by an enterovirus that grew after I got corticosteroid shots. Just sayin!!

Not that you have enterovirus. But you should probably get tested for some of the things you see on the CFS Roadmap. There are lots of people with multiple infections believe it or not.

 

[sometexan84]

And the IgM and IgG is for EBV right? Or a different kind? If it’s the one for EBV you think it’s a good idea to get these retested?

It's different. Those were IgG antibodies against EBV specifically.

https://labtestsonline.org/tests/immunoglobulins-iga-igg-igm

 

[morgan_25]

Dude. Be careful on the steroid shots. Apparently, that can sometime increase the virulence in some cases. Like, I'm convinced that my CFS was initially caused by an enterovirus that grew after I got corticosteroid shots. Just sayin!!

Not that you have enterovirus. But you should probably get tested for some of the things you see on the CFS Roadmap. There are lots of people with multiple infections believe it or not.

That’s so crazy! She gave me an oral steroid for my high cortisol levels, but prior to that I did get like an antibiotic shot because she was convinced I had appendicitis back in February when this whole thing started. I initially had this huge stomach thing at that time and that right after that around March (I may have said April earlier, but it was actually March) I started having the lower back pain, then she diagnosed me with EBV again AND high cortisol and then gave me the oral steroid.

 

[morgan_25]

It's different. Those were IgG antibodies against EBV specifically.

https://labtestsonline.org/tests/immunoglobulins-iga-igg-igm

Oh okay got it.

 

[morgan_25]

Also wanted to point out that I NEVER have fevers, but will have an episode of where I get feeling really hot like I must have a fever, and dizzy and sometimes I faint. But I never actually have a fever. The hot feeling and fainting may be due to POTS, but I would still think I would run a fever with everything else going on, I generally run about 97 degrees.

 

[EddieB]

I am also suffering from sciatica now and it has moved to my right side as well. I still think my sacroiliac joint is a huge possibility, but the timing of when my illness got out of control seemed to be all too coincidental. It travels from like you said around the lower back to my hips, but also my pelvic and groin area. Have you had blood tests suggest that there is something going on with your kidneys?

I have had tests and scans, supposedly everything is ok. I have had some slightly high cortisol, I’ve read somewhere that this could cause intermittent pain above the kidney, but not sure if that’s true. My labs consistently show low platelets, low WBC, abnormal lymphocytes. Otherwise fairly normal.

Just my personal opinion, but I believe this virus (and maybe others) can set up camp and hide out in a variety of places in our bodies.

Years ago, (before I knew anything about EBV or that I might have it), I asked doctors if it was possible to have a deep seated infection hiding somewhere. I was told, firmly, NO.

Ten years ago, I had a severely infected tonsil, and had them both removed. Rough surgery and recovery, but then for 6 months I had a full remission of everything. It was like a miracle cure, I felt like I had my life back.

I questioned the doctors. Their answer: “well, you probability had a deep seated infection that’s been hiding out for years...”

Then slowly, after the six moths, all the sick, weak, flu like symptoms returned.

I’m fairly certain, that if they had bothered to test that tonsil, they would have found EBV.

 

[morgan_25]

I have had tests and scans, supposedly everything is ok. I have had some slightly high cortisol, I’ve read somewhere that this could cause intermittent pain above the kidney, but not sure if that’s true.

My labs consistently show low platelets, low WBC, abnormal lymphocytes. Otherwise fairly normal.

My last blood test I had showed that some of my my platelets were low such as WBC etc as well, but my doctor didn’t say anything about it I didn’t find out until I got a copy of my test results 🙄

 

[EddieB]

Also wanted to point out that I NEVER have fevers, but will have an episode of where I get feeling really hot like I must have a fever, and dizzy and sometimes I faint. But I never actually have a fever. The hot feeling and fainting may be due to POTS, but I would still think I would run a fever with everything else going on, I generally run about 97 degrees.

Same here. Feel hot, sweats, chills, at different times, but no fever. I did have some sort of bronchitis-thing twice last year, and that brought a fever, but none otherwise.

I’m two weeks into some sort of flare up right now; swollen lymph node, mouth sores, feel like death, but no fever.

 

[EddieB]

My last blood test I had showed that some of my my platelets were low such as WBC etc as well, but my doctor didn’t say anything about it I didn’t find out until I got a copy of my test results 🙄

Yes, and I also did a bone marrow biopsy. Whatever it is, they don’t seem worried about it.

One of the hematologists I saw said it could indicate a viral infection...

 

[andyguitar]

Ten years ago, I had a severely infected tonsil, and had them both removed. Rough surgery and recovery, but then for 6 months I had a full remission of everything. It was like a miracle cure, I felt like I had my life back.

Were you given any drugs after the surgery @EddieB or any other treatment?

 

[morgan_25]

Same here. Feel hot, sweats, chills, at different times, but no fever. I did have some sort of bronchitis-thing twice last year, and that brought a fever, but none otherwise.

I’m two weeks into some sort of flare up right now; swollen lymph node, mouth sores, feel like death, but no fever.

I had bronchitis a couple times too and, yeah, they gave me a fever as well. But EBV and all the other viruses and all my other health issues, never give me a fever.

Same here! It’s been bad since about February-March, but the last two weeks have been HORRIBLE. So much pain and migraines. I’ve had a bunch of weird things come along with the tinnitus in my ears. Pain in my face, jaw, behind my eyes, in my temples and yeah my lymph nodes have been really bad maybe in the past month or so.

 

[EddieB]

Were you given any drugs after the surgery @EddieB or any other treatment?

Yes. I was on an antibiotic for a short time after the surgery. When the symptoms returned, I went back on it, but no help.

And after the surgery, I was living on milk shakes, macaroni and cheese, mashed potatoes, and scrambled eggs.
So much for the dietary cures...