Is it a new disease or its CFS ?

U

urraco2012

Messages
55
ronR said:
In case of Mycoplasma infection .... Would there be increase in IgE antibodies ....like hyper IgE ?? As it is a parasitic bacteria ??
Anyone here, have any idea ?????
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Why are you asking that? I have elevated range of IgE, like 300 and the high normal range is 80. Doctor says its not enough to suspect something (dont know why exist a reference range if they dont see any problem being out of range).
Actually, now I feel like always being in a allergic reaction, and I wasnt allergic at all.

And, about your first question, I have been suffering this for 8 months. Fortunately Im getting better, now I can eat well and dont feel painful, but now Im very sleepy and fatigued all the time.
 
U

urraco2012

Messages
55
Teedot said:
My response from Lipkin's office, in request for an answer or research
Hi
While we are empathetic, we simply do not have the resources to pursue this project. We wish you well.
Sincerely,
--
Allison M. Kanas
Center for Infection & Immunity
Mailman School of Public Health
Columbia University
I guess I really wasnt surprised by this. I spoke for all,not just me. This seems to be the theme for many.
Click to expand...

That's the point, is all about resources. Unfortunately it´s the Machiavellian way to govern, govs dont care about everybody, they care about balance and give a feeling of tranquility in detriment of the health of a few. Our dear politicians... but they can always change their mind through the media pressure.
Anyway it´s nice to know somebody is doing that much in benefits of all. Thanks.
 
ronR

ronR

Messages
76
Location
India / singapore
Hi urraco2012 ,

I'm asking that because I have elevated IgE levels and allergies, which I didn't have ....this came after my exposure.

I suspect some pathogen (like Mycoplasma) might have elevated the IgE levels,which resulted in me being hypersensitive & allergic.

I also came across few people with our disease and elevated IgE levels.

IF MEMBERS HERE TAKE IgE TEST, THEN I CAN BE SURE ABOUT IT .

anyway thanks to you for informing :)
 
U

urraco2012

Messages
55
ronR said:
Hi urraco2012 ,

I'm asking that because I have elevated IgE levels and allergies, which I didn't have ....this came after my exposure.

I suspect some pathogen (like Mycoplasma) might have elevated the IgE levels,which resulted in me being hypersensitive & allergic.

I also came across few people with our disease and elevated IgE levels.

IF MEMBERS HERE TAKE IgE TEST, THEN I CAN BE SURE ABOUT IT .

anyway thanks to you for informing :)
Click to expand...

Maybe. I went to my doctor (one of them) and I ask for any Mycoplasma test, and he laughed and said ''you dont have to test for that'', I explained him what I read in the net etc, and, of course, again, he started looking at me like paranoic, crazy, obssesive, depressive, and that I need a psichiatric, etc, etc... So I guess I'll continue trying to find a doctor who really attend every symptom that I have and believe my situation. Do you know the name of the test for mycoplasmas??

He ordered an immunostimulant for me. The question is that I was taking the same medicament when I started with all the symptoms, so I stoped the treatment, but he said there's no relation between those symptoms and this medicine. Do you think this kind of medicine can cause some weird reaction in our body and produce all our symptoms? (I dont think so. Actually, I believe everthing started with my sexual encounter with that unrelaible girl)
 
S

Sherezade

Messages
97
Have any of you guys tested for nagalase activity? Sushi told me about gcmaf could be a treatment if we have high levels of nagalase. High levels of nagalase stop the creation of macrophagos which is a important part of the inmune system. I think is worthed to check it out.
 
U

urraco2012

Messages
55
Teedot said:
Urraco, you said you had symptoms with your last girlfriend, what were they?
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I had fatigue, dry eyes, diarrhea, dry mouth, white tongue. Thats was like 5 years ago, and those sypmtoms continued till now.
Then I had another episode last year, with another girl and that was much stronger, identic as an ARS. Dont know if I had the misfortune to meet with two dirty girls apparently normal with rare diseases or my immune system is having strange reactions (I dont like to refer to her like that, but regrettably thats my thoughts after all). I'm not a promiscuous guy at all and I've always tried to be very responsible, but I've had lapses like most people.
 
W

wyomingscared

Messages
16
Hey guys - for those that have had this for more than a couple of years.

Has anyone tested cd4, immune system stats?

Trying to see if this will be like a flu for a while or if it will impact us like hiv?

Teedot... What remaining symptoms do you have?
 
Overstressed

Overstressed

Senior Member
Messages
406
Location
Belgium
wyomingscared said:
Hey guys - for those that have had this for more than a couple of years.

Has anyone tested cd4, immune system stats?

Trying to see if this will be like a flu for a while or if it will impact us like hiv?

Teedot... What remaining symptoms do you have?
Click to expand...

Hi wyomingscared,

I had my first CD4/CD8 -test appr. one year after my infection(or mybe later - I have to look for my test). Initially, I thought I was infected with HIV, and didn't come to think of having a CD4-test, on top of a regular HIV-test. Later on, I had these tests performed, because my HIV-status remained negative.

From that moment, my CD4/CD8 stayed pretty normal, and stable: a ratio of 1.40

Despite that, I have some changed on my white blood cells:
- my lymphocytes are in a steady INCREASE, and are now upper limit normal
- my T-Helper cells fluctuate - when I have a relapse, the percentage of T-Helper cells increase until upper limit normal
- my percentage of NK-cells fluctuate
- my percentage of B-cells went up in the beginning, after Gc-Maf they went down again. I don't know what the status now is, since I quit Gc-Maf.

Best wishes,
OS.
 
ronR

ronR

Messages
76
Location
India / singapore
wyomingscared , some people with this mysterious disease reported to have low cd4 /low wbc after few years. i have posted few links too about it ,in previous pages.

What I have been reading about it, symptoms do comeback after some years of respite.
 
ronR

ronR

Messages
76
Location
India / singapore
urraco2012 , generally it unlikely for a same virus to cause infection twice.
My guess, would be your symptoms returned after a gap of few years, which is reported to be happening in this disease. It goes on like that for some years . I guess most of the symptoms must have been resolved ??
 
patient.journey

patient.journey

Senior Member
Messages
443
Sherezade said:
Have any of you guys tested for nagalase activity? Sushi told me about gcmaf could be a treatment if we have high levels of nagalase. High levels of nagalase stop the creation of macrophagos which is a important part of the inmune system. I think is worthed to check it out.
Click to expand...

Its on my mind as a thing i hope it would help
 
patient.journey

patient.journey

Senior Member
Messages
443
wyomingscared said:
Hey guys - for those that have had this for more than a couple of years.

Has anyone tested cd4, immune system stats?

Trying to see if this will be like a flu for a while or if it will impact us like hiv?

Teedot... What remaining symptoms do you have?
Click to expand...

My last CD4/CD8 test was good and am going to have a new one soon
 
patient.journey

patient.journey

Senior Member
Messages
443
Overstressed said:
Hi wyomingscared,

I had my first CD4/CD8 -test appr. one year after my infection(or mybe later - I have to look for my test). Initially, I thought I was infected with HIV, and didn't come to think of having a CD4-test, on top of a regular HIV-test. Later on, I had these tests performed, because my HIV-status remained negative.

From that moment, my CD4/CD8 stayed pretty normal, and stable: a ratio of 1.40

Despite that, I have some changed on my white blood cells:
- my lymphocytes are in a steady INCREASE, and are now upper limit normal
- my T-Helper cells fluctuate - when I have a relapse, the percentage of T-Helper cells increase until upper limit normal
- my percentage of NK-cells fluctuate
- my percentage of B-cells went up in the beginning, after Gc-Maf they went down again. I don't know what the status now is, since I quit Gc-Maf.

Best wishes,
OS.
Click to expand...

How was your trail with GcMaf ?
 
patient.journey

patient.journey

Senior Member
Messages
443
ronR said:
wyomingscared , some people with this mysterious disease reported to have low cd4 /low wbc after few years. i have posted few links too about it ,in previous pages.

What I have been reading about it, symptoms do comeback after some years of respite.
Click to expand...

Different stuff with different cases and pathogens
 
patient.journey

patient.journey

Senior Member
Messages
443
My doctor want me to start Valcyte for 3 months as my first 3 week dosage would be 1800 mg daily then i will continue on 900 mg for the rest of the three months and i would give this a try so i would see if this is a herpes virus or not !!

I would update you guys when i start this
 
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