Is it a new disease or its CFS ?

[nanonug]

I was born with Geographical tongue, what do they biopsy for?? everybody just dismissed like it is a normal thing to have.

Anecdotally, geographic tongue is associated with mastocytosis. A biopsy of the tongue would be able to answer this question precisely on an individual basis.

 

[taniaaust1]

What some people also do is to try a combination of an H1 with an H2 blocker and see if they feel better. Myself, I take fexofenadine and ranitidine.

Blood/urine tests are somewhat unreliable given the potential amount of substances release by mast cells. On the other hand, bone marrow biopsy is the gold standard for mastocytosis but not for MCAS.

Bone marrow biopsy can even miss some mastocytosis cases if they dont do it in an area of where the bone marrow is affected (that was the whole reason why I never tried to push further in the masto direction). Hopefully one day their will be better ways to diagnose so many of the other things out there which we could have.

Apparently not long ago, they discovered the gene(s) for masto. So maybe that will help add in diagnosing some masto people. If I ever get to see a genetic specialist, its one thing I want to be tested for.

 

[patient.journey]

Anecdotally, geographic tongue is associated with mastocytosis. A biopsy of the tongue would be able to answer this question precisely on an individual basis.

I had a tongue biopsy two days ago, they took a one of those crappy hurting stuff in my geographical tongue ,,
Hope it will give some answers

 

[patient.journey]

Bone marrow biopsy can even miss some mastocytosis cases if they dont do it in an area of where the bone marrow is affected (that was the whole reason why I never tried to push further in the masto direction)....

Every thing could miss something before i got to this illness i thought that medical area is much more modern but i was wrong ! anyway the only thing i could do now is to convince my doctor to take more biopsies and to run more tests until something would appears cause even in CFS circle i found that its not the same story for all people here so i should find my own one..

 

[taniaaust1]

Every thing could miss something before i got to this illness i thought that medical area is much more modern but i was wrong ! anyway the only thing i could do now is to convince my doctor to take more biopsies and to run more tests until something would appears cause even in CFS circle i found that its not the same story for all people here so i should find my own one..

While you are doing this and that trying to find something other then ME/CFS... dont forget to to get also tested for the common ME/CFS findings (the canadian consensus document mentions many of these).

I wasnt happy accepting that I had a ME diagnoses until several ME abnormalities where found by tests. in my own case .. postive Rombergs test, a ME EEG abnormality, low cortisol.. which is often found ME. (ME always has so many different things and common abnormalities that it just really dont fit any other illness).

Finding quite a few of the ME abnormalities (eg also your EBV test is supportive in this area) can help you to conclude stronger that its probably ME you have, rather then something entirely different. (thou always be on the lookout in case it does turn out to be something else).

 

[patient.journey]

After 6 years with her , sharing our dreams since we were young, making our promises to stay there for each other and doing our best to continue our small thing that they call love , years were running infront of our eyes and we thought that life is opening her doors for us and we will make it , I graduated from University and i was planing to start searching for a job so we can get married or at least to ask her hand from her family cause girls here make it in this age life didnt want us to go further or this is what i think ! a problem raised between our families and it had its influence on us a fight happened and we break up </3 a break that was a damn on my life, she was my best friend before she was my GF and she is my all life right now and I lost her , I went out crazy to drink and some of my past friends wanted to cheer me up they took me THERE and i wont forget where was THERE ! that dark cold room with drinks every were around me and my worst night mare started in that moment , i never cheated her cause she was something else but i have to believe its fate and my stupid head I drank and drank until i was totally lost and wasted and that old friend took the phone and called asking for THEM , THEY came and he paid, I said no and i didn't , he took the one he picked for me and went inside he is done and the last thing i knew about him that he is still fine while am here on pain, I drank more and more until i star crying talking about my life without her , had a fight with a bouncer in the hotel club and in my way back to the room in that corridor I found THAT DIRTY THING , and i did it </3 it seemed easy when you are F****ed but it wasn't , My GF called and I asked her to be back next day telling her life without you is nothing and we were back and we were suppose to meet in 5 days i cant forget that before two days of seeing her every thing started i saw a doctor and he said its nothing take those antibiotic and every thing will be alright but its never been alright since that time symptoms went worse and worse until i was thrown on my bed for couple of months i told her am sick and i don't know throw what and after i was tested free of all STD’s and i could stand up again i thought am fine and its all will be good but i was wrong again and here i am after a year of illness and a year without touching, kissing her or knowing if our life could get back the same , a year in hospitals trying to find an answers that i couldn't found yet looking at her eyes seeing sadness, knowing its my mistake i couldn't stay longer Am sick and i don't know if am going to be ok soon and i know that her family want you to get engage soon, I told her its your choice and she asked for a break to think of every thing and to stay away and i asked her to continue her life without me cause she deserve nothing except the best and i cant see her suffering with me waiting for something am not sure when is it coming cause she doesn't deserve that ,, today was the first day from my life without her and i know that I DAMN MISS HER

 

[taniaaust1]

oh that's so hard. Be aware that some do recover esp within the first 2 years (post viral syndrome, they used to say one often recovers withiin 2 years). Try to not think of your illness as probably a long term thing until then.

Also try not to push people away from you.. those who care about you should be allowed to make their own choices rather you choosing what they should or should not have.

On reading your post.. Im also wondering if that big alcohol binge you had.. could have something to do with it rather then the sexual contact... alcohol and the stress of almost loosing your girlfriend and of the fight and breakup. Stress + a big unusual alcohol binge.. could possibly trigger off ME/CFS for some. Alcohol seems to be quite toxic to many of us, whether its cause some fault has happened in our bodies or whatever, who knows.

Anyway..with the severe stress you were under at that time with breaking up with your childhood sweetheart.. maybe it wasnt caused by the other sexual contact after all? You maybe need to ease up on yourself for your mistakes...(it wont help your illness and immune system blaming yourself..and could possibly help stop you from recovering). Stress is not good for you and you need to do whatever you can to lessen this.
..............

My own ME with all its viral symptoms, was very triggered off by stress at the start of it... stress and late nights while studying for exams and doing major assignments. Whether my body being knocked around by those things triggered by allowing something I may of been unawarely carrying to start with?.. who knows.

(in my case I'd had a blood transfusion as a child..but then that was 20 years before I got ME, but maybe something was always there awaiting a triggering time? I also discovered in recent years that one of my primary school teachers had CFS while teaching or maybe its genetic and was just waiting for a trigger).

Anyway..you cant be 100% sure what has caused it, could of drinking and a lot of stress triggered it or if it was in fact the sleeping with the other. So ease up on yourself. Dont assume you will continue to have this illness as you havent had it long enough to come to that certain conclusion yet.

 

[patient.journey]

oh that's so hard. Be aware that some do recover esp within the first 2 years (post viral syndrome, they used to say one often recovers withiin 2 years). Try to not think of your illness as probably a long term thing until then.

Also try not to push people away from you.. those who care about you should be allowed to make their own choices rather you choosing what they should or should not have.

On reading your post.. Im also wondering if that big alcohol binge you had.. could have something to do with it rather then the sexual contact... alcohol and the stress of almost loosing your girlfriend and of the fight and breakup................

Thank you Tania ,,,

Yes I was stressed but before my symptoms started we were back so i think its not involve , we were back the the next day and of that night and i thought that every thing will go back the same but as i said it didnt ,,

Yes am not sure how i got it but i stay with her for the same reason cause i cant think of infecting her and am not pushing any one else because am not touching other people that way !

I wish i will get better before i reach my two years time line ...

 

[patient.journey]

Hey guys i need a help to pick up the best lab for Lyme and other co infections testing I would like to hear you ideas and your trials and this will be helpful for all of us as we can get an advantage from other people good and bad trials
Mycoplasma Spp ( a lab that would cover the main 5-6 spices by a specific test and got another multiple test that would cover something between 15-20 spices)
Brucella Spp
Babesiosis
Bartonella Spp ( a lab multiple test that covers15-20 spices)
Rickesttia Spp ( a lab multiple test that covers 9-13 spices)
Coxiella burnetii
Ehrlichiosis (HME and HGA)
Lyme and other Borrelia Spp
Leptospira Species ( a lab multiple test that covers 9 spices and more
Thanks in advance

 

[tonydewitt]

It all came together it might be there was couple of days between them but i don't remember what came first rashes or white tongue cause both were 11 months ago same as painful lymph nodes

I ran HTLV1/2 test with the confirmation i sent it to Biomins lab in Europe that search for every gene on it and all were negative thanks god , i ran ANA twice and it was negative same for Hep A,B,C

Omar,


I've been through pretty much the same as OverStressed, and like him, I suspect it's HTLV. Also, like OverStressed, I had elevated liver counts (and liver pain). Also like OverStressed, I got tested with both the HTLV antibody and PCR tests. When I read that you had a HTLV test with "confirmation", I'm curious as to whether the confirmation test was run (labs typically don't run the confirmation test if the initial test is negative, and vice versa), and what the confirmation test was (PCR or Western Blot). You said they tested "for every gene" of HTLV. The Arup Consult site lists the Western Blot testing algorithm as checking for the following genes:

rgp 46-1, p19
& GD21

rgp 46-11,
p24 & GD21

rgp 46-1, rgp 26-11,
p24, p19 & GD21

At least 2 of p24, GD21, p19
in combination with any other
viral bands, but not rgp 46-1 or
rgp 46-11

Any combination of bands
(including rgp 46-1 and/or rgp
46-11) but only one of p24,
GD21 or p19

I'm just not clear on whether you were actually tested with PCR or Western Blot as a confirmation test, or the confirmation test was skipped altogether because your initial antibody test was negative.

Best wishes.

 

[patient.journey]

Omar,


I've been through pretty much the same as OverStressed, and like him, I suspect it's HTLV. Also, like OverStressed, I had elevated liver counts (and liver pain). Also like OverStressed, I got tested with both the HTLV antibody and PCR tests. When I read that you had a HTLV test with "confirmation", I'm curious as to whether the confirmation test was run (labs typically don't run the confirmation test if the initial test is negative, and vice versa), and what the confirmation test was (PCR or Western Blot). You said they tested "for every gene" of HTLV. The Arup Consult site lists the Western Blot testing algorithm as checking for the following genes.......

Hi Tony
my HTLV test 1/2 is called an "antibody confirmation test" the result is written this was :

Gag P19 1/11 Negative
Gag P24 1/11 Negative
Env gp 46 1/11 Negative
Env gp21 1/11 Negative
Gag P 19 1 Negative
Env gp 46 1 Negative
Env gp 46 11 Negative

 

[tonydewitt]

Hello Omar,

Thank you for your fast & detailed reply - you certainly were tested for the components of HTLV - I'm going to eventually need to go down the same road as you & get the same done for myself. Unfortunately, the 3 HTLV antibody tests that I took and the one HTLV PCR test that I took are not giving me the peace of mind that I don't have it, since I continue to have symptoms like back pain, leg stiffness, fatigue, etc.

Thanks again for your information.

 

[patient.journey]

Something to add at the end of the report there is this ( No anti HTLV antibodies detected after immunoblot testing )
If I am correct immunoblot is a WB test ?! and thats mean i was positive using Elisa maybe !
if thats true what is the window period of HTLV WB test ?

 

[Overstressed]

Hi Omar,

I mailed Tony too, because I had an antibody test, ELISA, which don't seem to be sensitive enough. WB is a bit more sensitive, I think, and might be carried out as a first test(and only test). Since HTLV is present in very low numbers, ELISA might miss it. I had a test run additionally in research, by an HTLV-researcher, which was more sensitive. This was also negative. Unfortunately, I forgot the name of the test, it was called something like 'enolia'. If you're unsure, I would contact an HTLV-Researcher, and have a more sensitive test carried out.

To be honoust, I still think HTLV might causing my illness. Too many symptoms just fit so well.

Best wishes,
OS.

 

[patient.journey]

Hi Omar,

I mailed Tony too, because I had an antibody test, ELISA, which don't seem to be sensitive enough. WB is a bit more sensitive, I think, and might be carried out as a first test(and only test). Since HTLV is present in very low numbers, ELISA might miss it. I had a test run additionally in research, by an HTLV-researcher, which was more sensitive. This was also negative. Unfortunately, I forgot the name of the test, it was called something like 'enolia'. If you're unsure, I would contact an HTLV-Researcher, and have a more sensitive test carried out.

To be honoust, I still think HTLV might causing my illness. Too many symptoms just fit so well.

Best wishes,
OS.

I had a WB test it seems like my Elisa was positive but all the genes says its negative at the confirmation test and i should believe in my results cause it was made by a big lab in Germany beside it was 7 months and a half after the exposure so except if the HTLV WB window period could be longer i think am free of it !!!

 

[patient.journey]

This woman is brave (Non HIV Aids) :
http://cfsstraighttalk.blogspot.com/
Her call to CFS advisory Committee

 

[patient.journey]

Please join this web site we need to get Signatures as much we can so we can reach our voice to who could help us
I might not be with all information in the website but like all of us the woman who made the website believe in a theory that might be wrong or right but this is not her mistake its medical community mistake that left us alone trying to find answers by our selves .. please join
http://www.change.org/petitions/hiv-negative-aids#share

 

[patient.journey]

House of Numbers: How the HIV/AIDS Story is being rewritten *award-winning* documentary, a 2.5 min trailer can be seen:

 

[patient.journey]

I was able to talk with two Chinese researcher who were in the top of the research group of the HIV like illness outbreak in China and guess what guys !! they told me that patient they tested have an active herpes viruses (EBV,CMV,HHV6 & HHV7) and they are devolving a CFS or a CFS like illness after there sexual exposure !! and the reason is not yet recognize they need time and participation .

But what i couldn't get how they didn't find a new pathogen ?! and all of the pathogens they found were known ones that every one have so what does that mean !! are we CFS patients ?! and I asked about other information i read that its not a viral and if they chick tissue samples and what about bacterial infections but there was no answer for this !!

There minister spoke twice that this was a phobia but physicians believe its not as they said and that a lot of people got the same symptoms after an exposure or a close contact with an infected person but it seems there minister is not a believer of CFS/ME illnesses and such like illness because at least they would put them under this category as they match with CFS symptoms and herpes viruses activation.

Another funny thing, there minister showed of that day after new HIV like illness in Asian people was found by DR. Sara brown in NIH two months ago as those people have an interferon gamma antibody that stop there CD 4 from working but it doesn't kill the T cells like HIV, the minister said that maybe some of the first group patients got this illness !! but he didn't even try testing them for it or anything and now when a doctor from a different country found this in Taiwan and Thailand people it became that there might be some patients in China with this illness !!

Before the virus of AIDS was found they thought its an autoimmune disease that its just hit Gay people and now this new disease is thought to be an autoimmune disease that it does hit Asian people only.

What if its the same HIV story and after one or two years a new virus or microbe will be found as the cause of this and it will be shown that those people in China and every were else were patients with same illness like me are infected with this pathogen, what the minister replay will be ?

I just wish we will know what is wrong with us and are we CFS/ME patient or we are not and is this a new disease and we are just lost under CFS huge umbrella wasting our time doing nothing

 

[Hip]

I was able to talk with two Chinese researcher who were in the top of the research group of the HIV like illness outbreak in China.

Very interesting, Omar. How did you get in contact with these Chinese researchers? And which institutions do they work in? China CDC? Pasteur Institute of Shanghai?

But what i couldn't get how they didn't find a new pathogen ?! And all of the pathogens they found were known ones that every one have so what does that mean?

I can only think of two possible reasons why the Chinese researchers have not found the pathogen that causes the Chinese "HIV-like" disease:

(1) The Chinese "HIV-like" pathogen might be an entirely new virus, and since there are no standard laboratory tests for new pathogens, it can take a lot of difficult research work to detect and discover a new pathogen in the blood or body tissues of an infected patient.

(2) The Chinese "HIV-like" pathogen may be a new strain of an existing virus that is not easy to detect. One existing virus that is hard to detect is coxsackievirus B (usually abbreviated to CVB). CVB is a major probable cause of ME/CFS. And CVB can cause symptoms very similar to those found in the Chinese "HIV-like" disease.

In chronic infections of CVB, as you have in ME/CFS, the CVB virus generally does not show up on antibody or PCR blood tests. Only during the first week of an acute CVB infection — when you first catch it — can this virus be detected. After this initial acute infection, the CVB virus is quickly cleared from the blood stream, and so the virus becomes invisible to most standard commercial laboratory tests. Chronic CVB can be thought of as a type of stealth virus.

Even in ME/CFS patients that are infected with CVB, it is very hard to detect this virus. But fortunately Dr Chia has found and developed reliable ways to detect chronic CVB infections.

Omar: Why don't you ask these researchers in China if they have tested for all 6 types of coxsackievirus B (CVB1 to CBV6) in the patients with the Chinese "HIV-like" disease.

Ask the researchers if they have any tests in China with sufficient sensitivity to detect chronic CVB infection. If not, then they may have missed this very important CVB virus in their research — a virus which may be the actual cause of the Chinese "HIV-like" disease.

I would tell these researchers in China about Dr Chia's methods for detecting chronic CVB infection in the body. I can give you references to Chia's scientific publications if you want. Dr Chia gets a stomach tissue biopsy sample from his patients, and looks for the CVB virus in this stomach tissue, not in the blood. Chia's stomach biopsy is a very sensitive test for CVB.

The Chinese researchers need to test for chronic CVB, using such very sensitive tests.

None of the Herpesviridae (herpes family viruses) like EBV, CMV, HHV-6 and HHV-7 can be the culprit virus of the Chinese "HIV-like" disease, because we know that the incubation period of the Chinese "HIV-like" pathogen is around 2 to 3 days, and the incubation periods of the herpes family viruses is many weeks or months. However, the incubation period of CVB is 3 to 5 days, so this fits well.

They told me that patients they tested have an active herpes viruses (EBV,CMV,HHV6 & HHV7).
...
And all of the pathogens they found were known ones that every one have so what does that mean?

Adults generally have many of these Herpesviridae (herpes family viruses) in their bodies already, from catching these viruses in earlier life. In healthy adults, the immune system keeps these Herpesviridae in control and inactive. But if you catch another infection that weakens you immune system, these Herpesviridae can become active again. This is nothing unusual.

ME/CFS patients have many of the same pathogens that healthy people have. The reason why these pathogens cause ME/CFS in some people but not in others is a bit of a mystery. Genetics may be part of the answer. Or perhaps it takes a certain combination of specific pathogens together to cause ME/CFS.

I asked about other information i read that its not a viral and if they chick tissue samples and what about bacterial infections but there was no answer for this !!

The Chinese "HIV-like" disease often begins with a sore throat. Bacterial sore throats are very easy to detect by using bacterial culture. (Bacterial culture is taking a swab sample from the mouth, and growing the bacteria in the laboratory in a petri dish). So if the Chinese "HIV-like" pathogen was a bacterium, it would have been easily detected in the throat, using a bacterial culture.

I just wish we will know what is wrong with us and are we CFS/ME patient or we are not and is this a new disease and we are just lost under CFS huge umbrella wasting our time doing nothing.

I looked very closely at the symptoms of the Chinese "HIV-like" disease, and compared them to the symptoms normally found in ME/CFS. Although there are lots of similarities, there are several symptoms that commonly appear in the Chinese "HIV-like" disease that do not normally appear in ME/CFS. These symptoms are:

• Severe chronic and nearly constant chest pain that lasts for months or years.
• Rash and skin peeling symptoms usually on palms of hands and soles of feet, but sometimes also on the legs.
• Skin becomes stiff and lose its elasticity (indentations in the skin made by finger pressure take a along time to disappear, due to this stiffness).
• Bleeding gums.
• Joints make popping sounds when moved (a medical condition called crepitus).
• Muscles constantly twitch.

The above common symptoms of the Chinese "HIV-like" pathogen are very rarely found in ME/CFS.

So it does seem that there are some differences between the Chinese "HIV-like" disease and ME/CFS.

But some of the tried and tested treatments used in ME/CFS may be very beneficial for the Chinese "HIV-like" disease. In particular, the drugs that treat Herpesviridae infections, such as Valtrex, Famvir and Nexavir could be tried to see if they help the Chinese "HIV-like" disease. These are all very safe drugs.

Also vitamin B12 injections, which are often beneficial for ME/CFS, could be tried. And transdermal magnesium (putting high doses of magnesium cream on your skin) is a good one to try.