Please, help me figure out what- what should I do?

[stigman88]

Hi,

I'm new one here as many other memebrs with cfs symptoms.

I'm struggling with:
-brain fog,
-fatigue, tiredness even after 12 hours of sleep
swollen glands
-stiffness and cracking in neck
-massive hair loss - it has abnormal color, a bit yellowish
-confusion, dificulty thinking
-ears ringing
-irritability
-poor short-therm memory
-eyes vision/dobule and blurry sometimes


Tests that I have done so far. As you can see somthings triggers my immune system and makes massive inflammation. Since a few months I've got giant vessels inflammation and needed to take methylprednisone. I'm on 40 mg since 2 weeks.

In past my ILADS doctor adviced me to go through protocol against lyme. So I started to take minocycline 200 mg/day and after 3 weeks I had to give it up since my vessels started to burn inside. Now I can't take antibiotics since they interfere with immune system. Whatever I take, it makes inflammation.

What should I do know? I'll be glad if you help me since I'm very confused about all of it.

EBV EA IgG - 0.04 (0.90-1.10)
EBV EBNA IgG - 197 U/ml (>20 U/ml positive)
EBV VCA IgG - 89,7 U/ml (>20 U/ml positive)

CMV IgG - more than>500,000 U/ml (>1,0 positivie)
CMV IgM - negative

Mycoplasma IgG - 1,01 (borderline 0.8-1.1)
Mycoplasma IgG - 58 RU/ml (>22 positive)
Mycoplasma IgM - negative

HCV - negative
HBs - negative

Th1/Th2 Panel

IFN-gamma 4571 pg/ml (290-1050)
TNF - 11770 pg/ml (320-1380)
IL-10 - 1011 pg/ml (1530-3830)
IL-4 - 51 pg/ml (20-120)
IL-5 - 23 pg/ml (20-95)
IL-2 - 281 pg/ml (20-45)

 

[Countrygirl]

@stigman88 I think @Hip might be the person to help with this.

 

[stigman88]

@stigman88 I think @Hip might be the person to help with this.

Thanks for info.

 

[Hip]

EBV EA IgG - 0.04 (0.90-1.10)
EBV EBNA IgG - 197 U/ml (>20 U/ml positive)
EBV VCA IgG - 89,7 U/ml (>20 U/ml positive)

CMV IgG - more than>500,000 U/ml (>1,0 positivie)
CMV IgM - negative

It's hard to interpret lab reports when you are not familiar with the ranges they use. But Dr Lerner says high cytomegalovirus IgG titers indicate chronic active infection in ME/CFS. He would treat cytomegalovirus with Valcyte. Some info can be found in the roadmap of chronic fatigue syndrome treatment.

 

[aquariusgirl]

Your response to minocycline sounds like my bartonella symptom....I think Dr Moyazeni says to expect a bartonella flare on drugs/during treatment.

 

[CFS_for_19_years]

Could giant vessels inflammation cause hair loss and vision problems? Could methylprednisone cause that?

Hypothyroidism can cause brain fog and the need for excessive sleep, along with hair loss, although the hair loss is usually gradual.

Massive hair loss should be investigated by a doctor. It could be caused by anemia, alopecia areata (an autoimmune condition that causes hair to fall out in patches) or lupus (another autoimmune condition). Even severe emotional stress can cause hair loss, but you can't say if that's the cause until you rule out other things.

 

[stigman88]

Could giant vessels inflammation cause hair loss and vision problems? Could methylprednisone cause that?

Hypothyroidism can cause brain fog and the need for excessive sleep, along with hair loss, although the hair loss is usually gradual.

Massive hair loss should be investigated by a doctor. It could be caused by anemia, alopecia areata (an autoimmune condition that causes hair to fall out in patches) or lupus (another autoimmune condition). Even severe emotional stress can cause hair loss, but you can't say if that's the cause until you rule out other things.

No, it has nothing to do with it. It's been going on since a few years. General hair loss is caused by infection which is still in me but I can't deal with it since I have weak humoral response. My hair is weak, thing and it gets abnormal color - as I said - yellowish. It can change it's color when I took some antiviral herbs, but these antiviral herbs are also effective against bacteria. So I don't know what exactly it could be. Bacteria or virus - or maybe coincidence? they're combined together? I don't really know.

Immunoglobulins
IgG - 8,46 (7-16)
IgM - 0,86 (0,4-2,30)
IgA - 1,40 (0,7-4,00)

You can notice on pictures that my beard is yellowish too.

https://imgur.com/a/W2hO3
https://imgur.com/a/6R2Ut

I'm negative for ANA, C-ANCA and P-ANCA and it's really unusual case for doctors. There are symptoms, but there is lack of antibodies.

When I did ANA 4 profile I have slightly higher anti-dsDNA which is specific for lupus. So everything seems to be lupuslike syndrome triggered by some infection.

 

[Rlman]

could heavy metal toxicity be an issue?