Aa
Is it normal to have 3 autoimmune diseases?
I have lots of diagnoses from different doctors:
Rheumatologist said I have: Sjogren's and Raynaud's from having abnormal SSA and SSB antibodies
Neurologist said I have : Myasthenia Gravis from having abnormal acetylcholine antibodies
I researched these diseases and they are considered to be Autoimmune diseases, and having three is called MULTIPLE AUTOIMMUNE SYNDROME...
Does anyone know more about this because the National Library of Medicine website says it is caused by infection with Cytomegalovirus or EBV.
http://www.ncbi.nlm.nih.gov/pubmed/17894021
I told my doctor and she ignored this information...what should I do? I feel ill. My doctors do not treat me at all...
One doctor told me not to come back when I had something called monoclonal gammopathy and I wanted to know what it was...then the doctor told me it went away and he wrote me a letter saying not to come back.
I think I am being given the run-around and need more tests for infection. What can I do? I am sick and tired and fall asleep during the day...And I can not walk too long, because my legs get painful with pressure and swelling, and my palms turn dusky red.
Rheumatologist said I have: Sjogren's and Raynaud's from having abnormal SSA and SSB antibodies
Neurologist said I have : Myasthenia Gravis from having abnormal acetylcholine antibodies
I researched these diseases and they are considered to be Autoimmune diseases, and having three is called MULTIPLE AUTOIMMUNE SYNDROME...
Does anyone know more about this because the National Library of Medicine website says it is caused by infection with Cytomegalovirus or EBV.
http://www.ncbi.nlm.nih.gov/pubmed/17894021
I told my doctor and she ignored this information...what should I do? I feel ill. My doctors do not treat me at all...
One doctor told me not to come back when I had something called monoclonal gammopathy and I wanted to know what it was...then the doctor told me it went away and he wrote me a letter saying not to come back.
I think I am being given the run-around and need more tests for infection. What can I do? I am sick and tired and fall asleep during the day...And I can not walk too long, because my legs get painful with pressure and swelling, and my palms turn dusky red.
Best Answer
This article appeared in JAMA July 2014
"Effects of Hydroxychloroquine on Symptomatic Improvement in Primary Sjögren Syndrome"
"The JOQUER Randomized Clinical Trial"
---Conclusions and Relevance---
Among patients with primary Sjögren syndrome, the use of hydroxychloroquine compared with placebo did not improve symptoms during 24 weeks of treatment. Further studies are needed to evaluate longer-term outcomes.
(Just do a search for entire article & it is free)
To my opinion, when the efficacy of this drug is at par with the placebo effect, it makes it a questionable prescribing decision for its use in
Sjögren's Syndrome, in light of all the possible adverse effects.
It might have better efficacy when taken as an antimalarial or for RA & Lupus.
I think doctors in the USA are prohibited from prescribing placebo pills to their patients.
"The Powerful Placebo," published in The Journal of the American Medical Association, showed that taking a pill, active or not, helped all the patients in the sample group.
In the end, the treating doctor should do a thorough risk/benefit assessment for each patient before prescribing any drugs, however, this practice seems to be widely ignored nowadays. Time constraints?
Lack of mandatory compliance? Whatever the answers are, they do absolutely little to slow down the huge increase in Iatrogenic caused
illness and death.
Cheers,
Niko
"Effects of Hydroxychloroquine on Symptomatic Improvement in Primary Sjögren Syndrome"
"The JOQUER Randomized Clinical Trial"
---Conclusions and Relevance---
Among patients with primary Sjögren syndrome, the use of hydroxychloroquine compared with placebo did not improve symptoms during 24 weeks of treatment. Further studies are needed to evaluate longer-term outcomes.
(Just do a search for entire article & it is free)
To my opinion, when the efficacy of this drug is at par with the placebo effect, it makes it a questionable prescribing decision for its use in
Sjögren's Syndrome, in light of all the possible adverse effects.
It might have better efficacy when taken as an antimalarial or for RA & Lupus.
I think doctors in the USA are prohibited from prescribing placebo pills to their patients.
"The Powerful Placebo," published in The Journal of the American Medical Association, showed that taking a pill, active or not, helped all the patients in the sample group.
In the end, the treating doctor should do a thorough risk/benefit assessment for each patient before prescribing any drugs, however, this practice seems to be widely ignored nowadays. Time constraints?
Lack of mandatory compliance? Whatever the answers are, they do absolutely little to slow down the huge increase in Iatrogenic caused
illness and death.
Cheers,
Niko
hi, a little background about me- former rn, I've had multiple odd symptoms for years. After 20 yrs I finally ended up at a fantastic Neurologist who told me he highly suspected an Auto Immune Disease due to all of the weird symptoms. he did a battery of blood tests and various nerve testing. The labs showed extremely low vit d, hypothyroid (which I was being treated for x 5 yrs by then) low b12, B12 antibodies, IGA antibodies -which prompted a bone marrow biopsy(became an oncology patient and he encouraged me to see an auto immune dr and get on treatment because treatment-plaquenil would help stop the proliferation of the abnormal cells) which was abnormal -showed MGUS-monoclonal gammopathy of unspecified significance , neuropathies-positive skin biopsies (not dermatology type)- , migraines, brachial plexopathy, red lower legs and feet-hands, and arm when in pain and numb, GI problems, liver failure, stroke, high cholesterol, very low good HDL, mitral value regurgitation,
and on and on...
and the labs were positive for Sjogrens. Most people and many dr.s still think sjogrens is just dry eyes and mouth, it is not. It is a systemic disease much like lupus and can be as critical as lupus if you're on the sever side of sjogrens, which I was and am, hence the liver failure, bone marrow abnormal cells, stroke.
You mentioned you have been diagnosed with Sjogrens, so why haven't they put you on Plaquenil?
I don't know where you live, but there is a sjogrens clinic at John's Hopkins in Baltimore, Md, which is one of a few worldwide. Julius Birnbaum is one of the great Dr.s. there, he's also a Neurologist, Rheumy, internist. If you google sjogrens, you should find an official site- a medical site-sjogrens.org. Don't read other non medical authorized sites, you'll get misinformation. Hopefully you can find a dr to get things straight.
There's no reason a dr shouldn't do a lab if a patient has concerns. If you live near a major medical hospital that is also a teaching (dr training) hospital that would be great too. I know the sjogrens and or auto immune clinic at hopkins takes a while to get an appt., but do it if you can or another place. people come from all over the world to Hopkins. search sjogrens clinics and you should be able to find a major one near you or call one to inquire about a dr. nearest you.
good luck.
and on and on...
and the labs were positive for Sjogrens. Most people and many dr.s still think sjogrens is just dry eyes and mouth, it is not. It is a systemic disease much like lupus and can be as critical as lupus if you're on the sever side of sjogrens, which I was and am, hence the liver failure, bone marrow abnormal cells, stroke.
You mentioned you have been diagnosed with Sjogrens, so why haven't they put you on Plaquenil?
I don't know where you live, but there is a sjogrens clinic at John's Hopkins in Baltimore, Md, which is one of a few worldwide. Julius Birnbaum is one of the great Dr.s. there, he's also a Neurologist, Rheumy, internist. If you google sjogrens, you should find an official site- a medical site-sjogrens.org. Don't read other non medical authorized sites, you'll get misinformation. Hopefully you can find a dr to get things straight.
There's no reason a dr shouldn't do a lab if a patient has concerns. If you live near a major medical hospital that is also a teaching (dr training) hospital that would be great too. I know the sjogrens and or auto immune clinic at hopkins takes a while to get an appt., but do it if you can or another place. people come from all over the world to Hopkins. search sjogrens clinics and you should be able to find a major one near you or call one to inquire about a dr. nearest you.
good luck.
Yes, while many people have these viral pathogens in their body-like EBV and CMV- in a dormant state, in a few re-infection happens usually when they are imuno-compromized.
Acute Lyme's disease, is fully recognized by most doctors in its acute only aspect and treated by antibiotics for 6-8 weeks usually.
What determines acute , I think, has to do with the length time that has passed from the initial infection.
In chronic infections it may take anywhere from a few months to a couple of years of antibiotic treatment, provided there has been no permanent organ or system damage.
The lyme spirochete is one of the smartest pathogens around!
When I first started studying this I was shocked to find out, not only how this organism can evade detection from the immune system and sophisticated testing methods, but also it's be able to survive all the various treatments against it for so long! It's totally insane!
Oh, btw, I posted this at the Lyme Community yesterday:
" In 2008, there were 2 doctors in Ontario willing to treat Ontarians suffering with Chronic Lyme disease. By 2010, Dr. Krop from Mississauga, Ontario, was forced to retire by the College of Physicians and Surgerons. This left Dr. Baghadlian, a North York, Ontario, infectious disease doctor to treat Ontarians with Chronic Lyme disease. However, by March of 2011, Dr. B was also under investigation by the College of Physicians and Surgeons of Ontario, leaving his patients with no choice but seek treatment elsewhere."
"I had recommended Dr. B to a few patients, however, the last 2 could not
see him b/c the College had already started their investigation" :(
(Copy and paste)
Please continue posting, though.
Best,
Niko
Acute Lyme's disease, is fully recognized by most doctors in its acute only aspect and treated by antibiotics for 6-8 weeks usually.
What determines acute , I think, has to do with the length time that has passed from the initial infection.
In chronic infections it may take anywhere from a few months to a couple of years of antibiotic treatment, provided there has been no permanent organ or system damage.
The lyme spirochete is one of the smartest pathogens around!
When I first started studying this I was shocked to find out, not only how this organism can evade detection from the immune system and sophisticated testing methods, but also it's be able to survive all the various treatments against it for so long! It's totally insane!
Oh, btw, I posted this at the Lyme Community yesterday:
" In 2008, there were 2 doctors in Ontario willing to treat Ontarians suffering with Chronic Lyme disease. By 2010, Dr. Krop from Mississauga, Ontario, was forced to retire by the College of Physicians and Surgerons. This left Dr. Baghadlian, a North York, Ontario, infectious disease doctor to treat Ontarians with Chronic Lyme disease. However, by March of 2011, Dr. B was also under investigation by the College of Physicians and Surgeons of Ontario, leaving his patients with no choice but seek treatment elsewhere."
"I had recommended Dr. B to a few patients, however, the last 2 could not
see him b/c the College had already started their investigation" :(
(Copy and paste)
Please continue posting, though.
Best,
Niko
I won't keep replying, because you helped ma a lot and good information, especially letting me know that CMV and EBV are infectious diseases. I also was hoping more people would reply so I could get different opinions...
But I found something yesterday and think some of my problems are vascular and will post in that community also.
I saw my palms turn dusky red when I had my arms down at my side, and fade when I raised them up! :(
Also, you said in your answer to me that "any doctor reported for diagnosing and treating it as a chronic infectious condition, puts him/herself at risk - depending largely on what state they're practicing in- of getting reprimanded or in the worse case losing their medical license."
Why is that? Who would know if they are treating me?
When I was given antibiotics for Pylori (stomach bacteria) after I ASKED and BEGGED to be tested (and the doctor finally agreed), the test was positive! So I think if I had Lyme the antibiotics could have made it stronger or antibiotic resistant, because the pills were for 2 weeks and I read that Lyme needs longer antibiotic treatment.
But I found something yesterday and think some of my problems are vascular and will post in that community also.
I saw my palms turn dusky red when I had my arms down at my side, and fade when I raised them up! :(
Also, you said in your answer to me that "any doctor reported for diagnosing and treating it as a chronic infectious condition, puts him/herself at risk - depending largely on what state they're practicing in- of getting reprimanded or in the worse case losing their medical license."
Why is that? Who would know if they are treating me?
When I was given antibiotics for Pylori (stomach bacteria) after I ASKED and BEGGED to be tested (and the doctor finally agreed), the test was positive! So I think if I had Lyme the antibiotics could have made it stronger or antibiotic resistant, because the pills were for 2 weeks and I read that Lyme needs longer antibiotic treatment.
CDC does not recognize Lyme's Disease chronic aspect and the same with the IDSA (Infectious Disease Society of America).
These guys, it seems, are making most of the rules :(
I checked the link and it confirms what I had posted.
If you read the detail in the bottom of the blue table it states:
" * Antibody to the early antigen in the presence of a positive EBNA does not automatically indicate that a patient's current medical condition is caused by EBV reactivation."
This however does not warrant in any way the doctor's decision not to test for further for CMV or other possible underlying infections.
Please try to get your thyroid tested asap ( ask & insist for the tests I mentioned). Can you imagine if this alone could explain a big part of your suffering, which is quite possible BTW!
Best wishes.
Niko
These guys, it seems, are making most of the rules :(
I checked the link and it confirms what I had posted.
If you read the detail in the bottom of the blue table it states:
" * Antibody to the early antigen in the presence of a positive EBNA does not automatically indicate that a patient's current medical condition is caused by EBV reactivation."
This however does not warrant in any way the doctor's decision not to test for further for CMV or other possible underlying infections.
Please try to get your thyroid tested asap ( ask & insist for the tests I mentioned). Can you imagine if this alone could explain a big part of your suffering, which is quite possible BTW!
Best wishes.
Niko
I did not know Lyme was considered an infectious disease. Does this mean it must be reported to the CDC? Boy my doctors are doing me harm!
As for the EBV test, I got my information that it could be CHRONIC infection from this website:
https://www.arupconsult.com/Topics/EBV.html
Also...here is the VERBATUM written reply I got from my doctor about why she will not test me for EBV, CM or Lyme. She wrote this to me. And I have a paper copy! I do NOT believe her that there are NO antiviral medicines...
These are the doctors words!
"I do not think testing for these infections is warranted at this time. At this point, there would not be any antibiotic or antiviral medication that would alleviate symptoms related to these infections if they were the cause of your symptoms. As such, I do not believe that testing is necessary and I will not order them. Please understand that I recognize that you are suffering; however, I would communicate your concerns to your regular medical doctor and hopefully this provider will help you to find ways to get better or learn to cope with your symptoms. - C. H, MD"
I never was tested for my thyroid either.
As for the EBV test, I got my information that it could be CHRONIC infection from this website:
https://www.arupconsult.com/Topics/EBV.html
Also...here is the VERBATUM written reply I got from my doctor about why she will not test me for EBV, CM or Lyme. She wrote this to me. And I have a paper copy! I do NOT believe her that there are NO antiviral medicines...
These are the doctors words!
"I do not think testing for these infections is warranted at this time. At this point, there would not be any antibiotic or antiviral medication that would alleviate symptoms related to these infections if they were the cause of your symptoms. As such, I do not believe that testing is necessary and I will not order them. Please understand that I recognize that you are suffering; however, I would communicate your concerns to your regular medical doctor and hopefully this provider will help you to find ways to get better or learn to cope with your symptoms. - C. H, MD"
I never was tested for my thyroid either.
Here are my EBV test results...I think they show chronic infection...but my doctor says they show PAST infection...and I think she is lying.
Component Standard Range Your Value
EBV Vca IgG Negative Positive
EBV-VCA IgM Negative Negative
EBV-early antigen Negative Positive
EBV Nuclear Antigen Negative Positive
Component Standard Range Your Value
EBV Vca IgG Negative Positive
EBV-VCA IgM Negative Negative
EBV-early antigen Negative Positive
EBV Nuclear Antigen Negative Positive
Hello Niko, yes I remember you...and yes I am still here...and am a lot worse and more sick.
You are right...I know I am on the doctors "S***T" list. I filed so many complaints with the ombudsman that they do not even answer me any more...
Brief overview of my symptoms: pain and heaviness/swelling in legs when walking, that gets worse until I sit down, pain in sacroiliac, and feeling ill. These symptoms have been getting worse and worse over the years.
Now my hands (palms) get flushed when I walk and I get heaviness in my chest. I feel really sick and sleepy, and fall asleep during the day for about 10-20 minutes...
I asked for an EBV test and posted the results on Med Help, because I think it shows chronic infection...and my doctor ignored it. I asked my doctor for a Lyme (from a tick bite in 1991), and CMV test...and my doctor refused.
I was diagnosed with sjogrens and raynauds (at one hospital), and myasthenia gravis (at the cleveland clinic), and googled these diagnoses, and found that they are caused by CMV and EBV, but when I told my doctor she ignored me...
I have to find a doctor who does not know about the hospital doctors I have seen.
You are right...I know I am on the doctors "S***T" list. I filed so many complaints with the ombudsman that they do not even answer me any more...
Brief overview of my symptoms: pain and heaviness/swelling in legs when walking, that gets worse until I sit down, pain in sacroiliac, and feeling ill. These symptoms have been getting worse and worse over the years.
Now my hands (palms) get flushed when I walk and I get heaviness in my chest. I feel really sick and sleepy, and fall asleep during the day for about 10-20 minutes...
I asked for an EBV test and posted the results on Med Help, because I think it shows chronic infection...and my doctor ignored it. I asked my doctor for a Lyme (from a tick bite in 1991), and CMV test...and my doctor refused.
I was diagnosed with sjogrens and raynauds (at one hospital), and myasthenia gravis (at the cleveland clinic), and googled these diagnoses, and found that they are caused by CMV and EBV, but when I told my doctor she ignored me...
I have to find a doctor who does not know about the hospital doctors I have seen.
Hi Jean, you're still around the forum, I see.
I'm sorry to read about your situation with your conditions and the way your doctors are treating you.
If I had a magical way to access your doctors' notes, I'm afraid I would find some unkind comments about you, which might be totally unfair.
When patients cases are complex, due to THEIR own incompetence, time constraints etc. and doctors cannot resolve them easily, patients get treated poorly almost discarded. At best they prescribe some symptom management meds and hopefully they work just enough, so they don't get bothered much.
You could be unofficially "blacklisted" off the record.
I bet if you were a rich client and went private, you would receive better treatment and you would never get written off because you have 3 complicated A/I conditions. Do no harm, right!
When you have one A/I condition it predisposes you to more.
I believe it has to do with some underlying factors, such as CMV, EBV,
genetics, toxicity, deficiencies, thyroid and/or adrenal issues etc.
It;s usually more than just one factor.
I had given you some information in the past and I'll go back to it, so I don't repeat some of those things.
Meanwhile, if you are able to do the same and let me know if you had ruled out anything or if you had tried any remedies that worked or did not work for you and any other more recent changes, not mentioned here.
Hang in there-I know it's been tough for you- but there are things you can still do to improve without necessarily the full co-operation of your doctors.
Blessings,
Niko
I'm sorry to read about your situation with your conditions and the way your doctors are treating you.
If I had a magical way to access your doctors' notes, I'm afraid I would find some unkind comments about you, which might be totally unfair.
When patients cases are complex, due to THEIR own incompetence, time constraints etc. and doctors cannot resolve them easily, patients get treated poorly almost discarded. At best they prescribe some symptom management meds and hopefully they work just enough, so they don't get bothered much.
You could be unofficially "blacklisted" off the record.
I bet if you were a rich client and went private, you would receive better treatment and you would never get written off because you have 3 complicated A/I conditions. Do no harm, right!
When you have one A/I condition it predisposes you to more.
I believe it has to do with some underlying factors, such as CMV, EBV,
genetics, toxicity, deficiencies, thyroid and/or adrenal issues etc.
It;s usually more than just one factor.
I had given you some information in the past and I'll go back to it, so I don't repeat some of those things.
Meanwhile, if you are able to do the same and let me know if you had ruled out anything or if you had tried any remedies that worked or did not work for you and any other more recent changes, not mentioned here.
Hang in there-I know it's been tough for you- but there are things you can still do to improve without necessarily the full co-operation of your doctors.
Blessings,
Niko
Have an Answer?
You are reading content posted in the Autoimmune Disorders Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
According to Mayo Medical Labs in your EBV test, there are 3 parts:
1.Viral capsid antigen (VCA) IgG,
2. VCA IgM,
3. Epstein-Barr nuclear antigen (EBNA)
When #1 is Positive, #2 Negative and #3 Positive, the interpretation is
Past Infection.
I don't know why they won't test for the CMV, however, Lyme's testing is very controversial and there are no medical authorities that will back any doctor who will go against the guidelines and test patients for chronic infection of Lyme disease.
Their position is more than clear that Lyme Disease is an acute infectious condition :(
Any doctor reported for diagnosing and treating it as a chronic infectious condition, puts him/herself at risk - depending largely on what state they're practicing in- of getting reprimanded or in the worse case losing their medical licence.
So, I'm not surprised at all.
Most people go privately to LLMDs (Lyme Literate Medical Doctor),
not an official specialty, just the way they're known.
It's tough for most people on fixed or lower incomes, like in your case.
Did you ever get hypothyroidism ruled out completely?
That is regarding thyroid function, which is missed more times than not because of flawed testing where only circulating serum levels are indicated,
very little to do with thyroid function in the cells!
Also if thyroid regulation-if one gets diagnosed-could be off if the regulation is based on the same tests.
With low thyroid function the body's healing ability is diminished, autoimmune disease processes are initiated.
A very important function of the thyroid is the removal of dead cells and the
activation of enzymes involved in this process as well.
When this waste material remains in the body and does not get cleared,
the immune system mounts an immune response (autoimmune).
If you have not gotten to the bottom of this, please consider Free T3,
Free T4 and Reverse T3 thyroid testing. All these 3 tests are needed!
Just do a search for all the symptoms of hypothyroidism.
It is pathetically long!
A big piece of your health puzzle?
Wishing you well.
Niko