FDG-PET Scan show hypoperfusion areas

[Frenchguy]

My CD3- CD16+ and/or CD56+ count was 29%, 663 (range 100/400).

One year later, the new count is 128...

 

[Frenchguy]

I don't have viral symptoms (swollen lymph nodes, fever ...)

 

[pattismith]

I don't have viral symptoms (swollen lymph nodes, fever ...)

I'm not sure if the absence of these symptoms really means that none is involved. Did you have serological blood work (IgG and IgM) for these virus and for toxo?

Most of these virus can make NK cell rising during the initial stage as well ...

 

[Frenchguy]

I'm not sure if the absence of these symptoms really means that none is involved. Did you have serological blood work (IgG and IgM) for these virus and for toxo?

Most of these virus can make NK cell rising during the initial stage as well ...

Me too...

Herpes 1
Igg : >51
Igm : negative

Herpes 2
Igg : negative
Igm: negative

Ebv
Vca igg : >750
Vca igm : negative
Ebna : 420
Mni test : negative

Toxoplasmose : negative

Hiv: negative

Hepatitis A, B,C: negative

I will be hospitalized next week because my symptoms deteriorate ... I have shortness of breath at rest and severe head pain with the fatigue.

It's very difficult, for me, photopheresis can help with my atypical lymphocytosis and unknown trigger . The hospital supposed to reinfuse my blood have blocked my treatment because they wan't that my doctor show my case in staff meeting... super

 

[pattismith]

i'm sorry to read you are geting worse, did you already start photopheresis David?

I can see that you have IgG for EBV and HSV1, but has your serology been done when your disease started or a year later?

How would you describe your head pain? Do you have tinnitus (acouphènes)?

 

[Frenchguy]

The serology have been done 9 months after onset.

I have pain in front and upper parts of my head. I have severe tinnitus in right hear.

I haven't started yet photopheresis because a doctor in the hospital who will reinfuse my blood block the procedure... he wan't a presentation before starting...

 

[pattismith]

Your EBV serology indicates past infection, but you don't know when and these results can't show it
It can be 9 months before as well...

I read in an article that "Several pathologies can cause both symptomatic headache and tinnitus, such as carotid artery dissections, arteriovenous malformations, traumatic brain injury, space occupying intracranial lesions, and intracranial hypo- or hypertension "

https://www.hindawi.com/journals/bmri/2015/797416/

EBV and Lyme can produce post infection intracranial hypertension, so maybe something to investigate?

I wish they will find what you are suffering from, maybe next week!

 

[Learner1]

Have you had a PCR test for EBV? Those titers can also indicate a chronic infection, for which an antiviral drug may help greatly. EBV can cause autoimmune antibodies and a number of other problems.

 

[Frenchguy]

Your EBV serology indicates past infection, but you don't know when and these results can't show it
It can be 9 months before as well...

I read in an article that "Several pathologies can cause both symptomatic headache and tinnitus, such as carotid artery dissections, arteriovenous malformations, traumatic brain injury, space occupying intracranial lesions, and intracranial hypo- or hypertension "

https://www.hindawi.com/journals/bmri/2015/797416/

EBV and Lyme can produce post infection intracranial hypertension, so maybe something to investigate?

I wish they will find what you are suffering from, maybe next week!

Hi @pattismith,
I think chronic EBV induce swollen lymph nodes and fever in the majority of cases but I'm not sure.
For Lyme, i have been extensively tested with laboratory Barla tests (western blot and immunoblot). The results was negative.
I have been on ceftriaxone and many others antibiotics during 6 months because this Lyme doc said that I can have Lyme without positive results.
Unfortunately, no improvements...

 

[Frenchguy]

Have you had a PCR test for EBV? Those titers can also indicate a chronic infection, for which an antiviral drug may help greatly. EBV can cause autoimmune antibodies and a number of other problems.

Hi @Learner1, I don't have had PCR but I will ask to my doc when I will hospitalized.
I currently take valacyclovir 2g/day but no improvements...
I have "flares" every 2 or 3 weeks with a sore throats and when this begin, my condition deteriorate...

I think I have ME, but I don't know the root cause...

 

[pattismith]

David, you are already on valacyclovir, so your doc is doing his best.

Valacyclovir and Valganciclovir have shown to be useful for subsets of CFS patients by Dr Lerner and Dr Montoya,
after long courses.

Would you say if some of your antibiotic trials have worsen your headache?

What kind of tinnitus did you experiment?

 

[Frenchguy]

@pattismith

j'ai un sifflement constant dans l'oreille droite

Desolé pour l'anglais lol

 

[Learner1]

Hi @Learner1, I don't have had PCR but I will ask to my doc when I will hospitalized.
I currently take valacyclovir 2g/day but no improvements...
I have "flares" every 2 or 3 weeks with a sore throats and when this begin, my condition deteriorate...

I think I have ME, but I don't know the root cause...

Maybe its not the right drug. My doctors started me on valacyclovir and switched me to valganciclovir.

And may be you have some other infection, too, with the flares?

Glad they're going to help you more...

Best wishes...

 

[Frenchguy]

Maybe its not the right drug. My doctors started me on valacyclovir and switched me to valganciclovir.

And may be you have some other infection, too, with the flares?

Glad they're going to help you more...

Best wishes...

Maybe, but it's my Lyme doctor who prescribed me valacyclovir and apparently valganciclovir isn't available in local pharmacy, just in hospital pharmacy. I already know that my internist doctor would not prescribe that...

Thanks Learner

 

[Learner1]

I've been on it 7 months at 1.8g a day and its helped a lot. Here's a paper on it in case its applicable to your situation.

 

[pattismith]

by the way, not sure if a blood PCR done after a course of Valacyclovir will show any EBV....

David, let's hope the doc will agree with a photopheresis treatment, it looks promising!

 

[Frenchguy]

@pattismith, I don't know if a course of antiviral can make ebv PCR negative...

Yes, my hope is that the doctor who actually don't want to give ECP change ...
As you know, it's difficult in France to have treatment for this disease...

I think photopheresis can help in my case given my high CD8 count and the finding of mark Davis on CD8 T cell expansion. I can't measure if i really have this clonal expansion in my blood, but given my symptoms and the atypical rise of this T cell subset, this area seem a good candidate.

For those who think Photopheresis can help, I want to clarify an important point, photopheresis can only work when there is pathological clone in yours T cell subset. The pathological clone, after irradiation with UV light is modified and when he is reintroduced in blood circulation, the immune system react and kill others identical clones,

David

 

[pattismith]

@pattismith, I don't know if a course of antiviral can make ebv PCR negative...

David, I think @Gingergrrl was PCR positive for EBV after her ritux treatment, and she had a course of antiviral until her PCR was negative (I can't remember which one nor how long, sorry). I'm sure she would read and answer to this post, but currently she is fighting for her mum's life, who is in a very bad situation in hospital, so she probably won't for now.

@Jesse2233 did well under photopheresis too although I am not sure if he had any abnormality in his CD8 prior to the treatment. His immune specialist doc seems interested to experiment this treatment on other ME patients, although jesse didn't mentioned which fullfilled conditions would be required.

By the way I guess in France, photopheresis will be prescribed only in the few indications you described, so let's hope you will be entitled to it, crossed fingers

 

[Gingergrrl]

Patti, I wrote a detailed update in my Rituximab thread a while ago (sorry can't link to it now) but when we re-tested the EBV PCR, it was negative so my doctor said I did not need an anti-viral.

The first PCR was so barely slightly positive that my doc feels it was either false positive or due to contamination. We will retest with next set of blood work but most likely will remain negative. Hope this helps.

 

[pattismith]

Patti, I wrote a detailed update in my Rituximab thread a while ago (sorry can't link to it now) but when we re-tested the EBV PCR, it was negative so my doctor said I did not need an anti-viral.

The first PCR was so barely slightly positive that my doc feels it was either false positive or due to contamination. We will retest with next set of blood work but most likely will remain negative. Hope this helps.

thank you ginger, I read your ritux thread, but it looks like my memory is not great, thank you for correcting me, especially as I know you are fighting so hard now for your mom.