Aa
DOES ANYONE KNOW WHICH?
Is CFS a connective tissue disease or is it an autoimmune disease?
Or is CFS neither one?
Or is CFS neither one?
I agree. It will be interesting to see if the new research (which questions what an autoimmune disease really is).... will affect physicians in the next decade ? I've read that physicians are 10-15 years behind in research.
I think you are right. I think the lab work is normal in MS. Physicians treat based on the current research.
On the topic of autoimmune diseases: if I remember right, MS patients normally do NOT have a positive ANA titer, but yet they do have an autoimmune disease.
I've read that physicians are 10-15 years behind in research and I really do believe that in the future, physicians are going to redefine what an "autoimmune" disease is.
I've read that physicians are 10-15 years behind in research and I really do believe that in the future, physicians are going to redefine what an "autoimmune" disease is.
I forgot to say that the eye condition you described in your first post can also be caused by lyme. It frequently affects the eyes. Not saying I think you have lyme but I would not discount this as a possible cause.
The FFC's usually test for lyme and other pathogens so even though you have gotten the run around in the past they will probably look into this. Though the testing is not very reliable and the longer you have it the less likely you are to test positive. Also the fact that you have had tick bites and persons close to you have had lyme make it more likely.
I don't know for sure if I have lyme or not but the answer is probably. It's a long story but my problems began shortly after 3 bullseye rashes. I have been outdoorsy person for over 20 years and am in the woods and fields about 4 times a week. I pull ticks off regularly in the summer months.
It sounds like you have seen the same kinds of doctors I have....the ones that don't know and think everyone is depressed! I also think that some degree of depression or mood swings in teenagers is common, especially when the hormones start kicking in. Severe depression is different though.
I am glad that you are able to articulate well and write long posts. I get tired....
I don't know for sure if I have lyme or not but the answer is probably. It's a long story but my problems began shortly after 3 bullseye rashes. I have been outdoorsy person for over 20 years and am in the woods and fields about 4 times a week. I pull ticks off regularly in the summer months.
It sounds like you have seen the same kinds of doctors I have....the ones that don't know and think everyone is depressed! I also think that some degree of depression or mood swings in teenagers is common, especially when the hormones start kicking in. Severe depression is different though.
I am glad that you are able to articulate well and write long posts. I get tired....
I will look for the Salmon Sockeyed Fish Oil...thanks!
For Yeast, I am taking a supplement by Ultraceuticals called Anti Yeast. It is on the immunesupport ******* website if you want to check the ingredients. It did work to a degree on its own. I was taking it since September.
I am on week 3 of a 6 week course of fluconozole/diflucan. It could have been mitronizadol (sp?) or another antifungal, but she picked this one for me since I still BF once a day. I coincidentally started taking cymbalta around the same time. I think I had a bad rxn to the cym and was also getting pretty sick from the yeast die off. I originally thought I got the stomach flu, was throwing up, achey in my back, neck, diarrhea. Strangely, I did not have a high fever. So, after 10 days of feeling like I had the flu, I realized it was not the flu! My 1st CFS Doc said I would feel really bad with the yeast die off, worse than I ever felt! He was right!!! (I now have a new CFS doc because the other one quit, plus I got pregnant right after getting dxd....so I had a long waiting period to treatment AND with the new Doc).
She told me that when the yeast die off, a lot of people have diarrhea, nausea, achey knee joints, achey muscles on the shoulder making your neck hurt (pulling on your spine), sometimes vommiting. Also, eruptions on the skin. I am breaking out everywhere....basically am getting some acne!!
I am sorry about the vasculitis and Lupus! Is the heart rate getting better? You may not want to take something as strong as the diflucan/metronizadole and stick with something like the Anti Yeast. They are not sure why, but my pulse was high 103 and 108 and my normally low BP went to 138/77. So....my BP did increase some. It could be this yeast treatment...maybe. They are keeping an eye on it.
HTH! Thanks for the FO suggestion!!
:)
Val
I am also not doing the diet I should or could be with this. I am gradually starting, though, by cutting out a lot of the sugary stuff I eat and eating whole grain bread instead of white. My Doc did say that I would not crave the sugar or sugary foods once the yeast died off. I am starting to notice that a little in the last 2 days, actually. Also with the nausea I am not eating as much.
I think there are yeast cleanses out there. Here is what is in the Anti Yeast: Coconut Oil Pwder (50% Capryllic Acid), Oregano Extract, Uva Ursi Extract, Garlic Powder, Grapefruit Seed Extract, Berberine Sulfate, Oile Leaf Extract, Alpha Lipoid Acid, Milk Thistle Extract, N Acetul L Cystine.
I also read from Dr. Teitlebaum that whenever you do any of the antifungal drugs, you should protect your liver and take Lipoic Acid. Some is in the Anti Yeast, but I bought some Lipoic Acid separately to start taking as well.
Definitely prepare to not feel well. Be prepared to spend some time sitting in the bathroom, too!!
For Yeast, I am taking a supplement by Ultraceuticals called Anti Yeast. It is on the immunesupport ******* website if you want to check the ingredients. It did work to a degree on its own. I was taking it since September.
I am on week 3 of a 6 week course of fluconozole/diflucan. It could have been mitronizadol (sp?) or another antifungal, but she picked this one for me since I still BF once a day. I coincidentally started taking cymbalta around the same time. I think I had a bad rxn to the cym and was also getting pretty sick from the yeast die off. I originally thought I got the stomach flu, was throwing up, achey in my back, neck, diarrhea. Strangely, I did not have a high fever. So, after 10 days of feeling like I had the flu, I realized it was not the flu! My 1st CFS Doc said I would feel really bad with the yeast die off, worse than I ever felt! He was right!!! (I now have a new CFS doc because the other one quit, plus I got pregnant right after getting dxd....so I had a long waiting period to treatment AND with the new Doc).
She told me that when the yeast die off, a lot of people have diarrhea, nausea, achey knee joints, achey muscles on the shoulder making your neck hurt (pulling on your spine), sometimes vommiting. Also, eruptions on the skin. I am breaking out everywhere....basically am getting some acne!!
I am sorry about the vasculitis and Lupus! Is the heart rate getting better? You may not want to take something as strong as the diflucan/metronizadole and stick with something like the Anti Yeast. They are not sure why, but my pulse was high 103 and 108 and my normally low BP went to 138/77. So....my BP did increase some. It could be this yeast treatment...maybe. They are keeping an eye on it.
HTH! Thanks for the FO suggestion!!
:)
Val
I am also not doing the diet I should or could be with this. I am gradually starting, though, by cutting out a lot of the sugary stuff I eat and eating whole grain bread instead of white. My Doc did say that I would not crave the sugar or sugary foods once the yeast died off. I am starting to notice that a little in the last 2 days, actually. Also with the nausea I am not eating as much.
I think there are yeast cleanses out there. Here is what is in the Anti Yeast: Coconut Oil Pwder (50% Capryllic Acid), Oregano Extract, Uva Ursi Extract, Garlic Powder, Grapefruit Seed Extract, Berberine Sulfate, Oile Leaf Extract, Alpha Lipoid Acid, Milk Thistle Extract, N Acetul L Cystine.
I also read from Dr. Teitlebaum that whenever you do any of the antifungal drugs, you should protect your liver and take Lipoic Acid. Some is in the Anti Yeast, but I bought some Lipoic Acid separately to start taking as well.
Definitely prepare to not feel well. Be prepared to spend some time sitting in the bathroom, too!!
Hello! Nice to meet you! Thanks!!
Well, I still have some of that brain fog! I have been trying to get everything I have done in one place (like all my labs on one spreadsheet so I can see what has changed/improved, not to mentioin WHAT I had been tested for! Not succeeding at getting organized. I used to be a very organized person :(
Yes! I was tested for Lyme in 2007!!!! That in itself is an achievement. When my ANA started to get really screwey I was pregnant with my 1st child (in 2001). My OB happened to re-test my ANA out of curiosity and he was surprised when it went up during my pregnancy. Me too! My OB suspected Lupus. (background, I had some infertility issues and he helped me).
So, my OB sent me to a rheumy. He was nice enough, examined me and said to come back 3 months after I had the baby because any tests done during pregnancy might not be accurate. So....I waited that YEAR and he retested my ANA again. It went down. He was not concerned and told me to come back if I had any symptoms.
About another year later, I realized something was not right. Something more than just postpartum stuff and mild depression. I was not keeping up with the other Mom's. I could barely drag my butt out of bed at 10:30 when my daughter woke up! I just knew something wasn't right. I'd take my daughter to a few activities like gymboree and a playgroup or just the park. I would look at these other Mom's and watch them effortlessly chase their kids around. They didn't look exhausted (neither didI though), get winded or complain about being so tired all the time! Not all of these women were in the greatest shape. Some were obese! But they could keep up!!! It was not just a matter of being out of shape and having a baby. Something was up, but I did not know what it could be. All I knew is that I was tired ALL the time and despite sleeping was still tired.
So, I made an appointment for that rheumy like he said I should. I think it took 6 weeks to get in. By this time (it was 2003-4) I read a little about Lyme. My husband's previous boss HAD Lyme. I had certainly been bitten by several ticks and in the Lyme region.
That rheumatologist absolutely REFUSED to do a test for Lyme. He said I needed to do some light exercise and would benefit from one of the newer SSRI's! How nice to point out the obvious...I am overweight and a little depressed because of my malaise! I was NOT depressed and THEN got tired...it was the other way around. But I never had a chance to make that clear. Also, I had a "history" of atypical depressionas a teenager!!!! Ya know when some Drs. can jump on that bandwagon, they often do! I even tried talking to this Dr.'s intern asking "why the heck can't you just run the test for Lyme"...thinking he may be new to his profession as a Dr. and excited to look into things. Well, that was silly reasoning on my part. He had to follow his boss' recommendations and even double checked with him. The answer was NO. The chance of you having Lyme is not likely!!! He also did not think I had fibro. Basically, he was saying he did not believe in Lyme! As you can imagine, I walked out of there very disappointed. Oh, and all the tests he ordered were WNL except the ANA.
So fast forward to a few months ago (late 2008)....I have a physical with my PCP and am discussing what the Fibro and Fatigue Doc is doing with me and show him the tests. He then mentions the rheum. I saw and said that that Rheum doesn't think Fibro/CFS is REAL!!!! OMG! I nearly jumped out of my chair! So....STILL....5 years later he is probably misdiagnosing many, many other people and telling them to lose a few pounds and take an antidepressant!!!! GRRRRRR!!!! So, my latest experience with a rheumatologist is not the best so my opinions are not favorable there!!! I DO realize that not all rheumatologists are disbelieving in Lyme/Fibro/CFS!
So....back to the question...the Lyme test. I do not think I was tested at the lab recommended by the Lyme Literate people....IgNex? I think I had the Western Blot. My current Fibro and Fatigue Doc said we will retest soon with the better test.
Sorry for the long answer to your question! Thanks for asking!
Patsy, do you have Lyme?
:),
Val
Well, I still have some of that brain fog! I have been trying to get everything I have done in one place (like all my labs on one spreadsheet so I can see what has changed/improved, not to mentioin WHAT I had been tested for! Not succeeding at getting organized. I used to be a very organized person :(
Yes! I was tested for Lyme in 2007!!!! That in itself is an achievement. When my ANA started to get really screwey I was pregnant with my 1st child (in 2001). My OB happened to re-test my ANA out of curiosity and he was surprised when it went up during my pregnancy. Me too! My OB suspected Lupus. (background, I had some infertility issues and he helped me).
So, my OB sent me to a rheumy. He was nice enough, examined me and said to come back 3 months after I had the baby because any tests done during pregnancy might not be accurate. So....I waited that YEAR and he retested my ANA again. It went down. He was not concerned and told me to come back if I had any symptoms.
About another year later, I realized something was not right. Something more than just postpartum stuff and mild depression. I was not keeping up with the other Mom's. I could barely drag my butt out of bed at 10:30 when my daughter woke up! I just knew something wasn't right. I'd take my daughter to a few activities like gymboree and a playgroup or just the park. I would look at these other Mom's and watch them effortlessly chase their kids around. They didn't look exhausted (neither didI though), get winded or complain about being so tired all the time! Not all of these women were in the greatest shape. Some were obese! But they could keep up!!! It was not just a matter of being out of shape and having a baby. Something was up, but I did not know what it could be. All I knew is that I was tired ALL the time and despite sleeping was still tired.
So, I made an appointment for that rheumy like he said I should. I think it took 6 weeks to get in. By this time (it was 2003-4) I read a little about Lyme. My husband's previous boss HAD Lyme. I had certainly been bitten by several ticks and in the Lyme region.
That rheumatologist absolutely REFUSED to do a test for Lyme. He said I needed to do some light exercise and would benefit from one of the newer SSRI's! How nice to point out the obvious...I am overweight and a little depressed because of my malaise! I was NOT depressed and THEN got tired...it was the other way around. But I never had a chance to make that clear. Also, I had a "history" of atypical depressionas a teenager!!!! Ya know when some Drs. can jump on that bandwagon, they often do! I even tried talking to this Dr.'s intern asking "why the heck can't you just run the test for Lyme"...thinking he may be new to his profession as a Dr. and excited to look into things. Well, that was silly reasoning on my part. He had to follow his boss' recommendations and even double checked with him. The answer was NO. The chance of you having Lyme is not likely!!! He also did not think I had fibro. Basically, he was saying he did not believe in Lyme! As you can imagine, I walked out of there very disappointed. Oh, and all the tests he ordered were WNL except the ANA.
So fast forward to a few months ago (late 2008)....I have a physical with my PCP and am discussing what the Fibro and Fatigue Doc is doing with me and show him the tests. He then mentions the rheum. I saw and said that that Rheum doesn't think Fibro/CFS is REAL!!!! OMG! I nearly jumped out of my chair! So....STILL....5 years later he is probably misdiagnosing many, many other people and telling them to lose a few pounds and take an antidepressant!!!! GRRRRRR!!!! So, my latest experience with a rheumatologist is not the best so my opinions are not favorable there!!! I DO realize that not all rheumatologists are disbelieving in Lyme/Fibro/CFS!
So....back to the question...the Lyme test. I do not think I was tested at the lab recommended by the Lyme Literate people....IgNex? I think I had the Western Blot. My current Fibro and Fatigue Doc said we will retest soon with the better test.
Sorry for the long answer to your question! Thanks for asking!
Patsy, do you have Lyme?
:),
Val
If you are going to try fish oil be sure and get Sockeyed Salmon Fish Oil as it is the best. It may be a little harder to find but it's worth it.
Also, I am supposed to start a yeast cleanse soon. I have been waiting to start it because I am doing one thing at a time in case I get sick then we know what caused it. I have lupus and recently was in the hospital with vasculitis around my heart (caused by lupus). I had a very high heart rate with any movement, such as going to the bathroom or anything but pulse would shoot up to 150-170. Anyway, that's just a little background since we haven't spoken before. I have been holding off doing the yeast cleanse and diet for 30 days because I was told I may have flu like symptoms as the yeast die. You mentioned something like that in your post. Please tell me what you have experienced while doing it and are you taking pills to kill the existing yeast? I can't think of the names of the pills but I could go look in the fridge if I need to. Please let me know what you are going through so I can prepare metally for it. I hope to do it within a month or so.
Thanks,
Joni
Also, I am supposed to start a yeast cleanse soon. I have been waiting to start it because I am doing one thing at a time in case I get sick then we know what caused it. I have lupus and recently was in the hospital with vasculitis around my heart (caused by lupus). I had a very high heart rate with any movement, such as going to the bathroom or anything but pulse would shoot up to 150-170. Anyway, that's just a little background since we haven't spoken before. I have been holding off doing the yeast cleanse and diet for 30 days because I was told I may have flu like symptoms as the yeast die. You mentioned something like that in your post. Please tell me what you have experienced while doing it and are you taking pills to kill the existing yeast? I can't think of the names of the pills but I could go look in the fridge if I need to. Please let me know what you are going through so I can prepare metally for it. I hope to do it within a month or so.
Thanks,
Joni
I liked your post and could not agree more. The only thing you didn't mention that could cause all of your symptoms is lyme disease? Were you tested?
Hi, I am new here. I was dxd with CFS/CFIDS in 2007. Pretty sure I've had this for about 20 years, though. I am pretty sick now and can't tolerate much. I am sick with one infection after another :bladder, sinus, kidney, ears, lung (pneumonia), skin and etc. I have undergone lots of blood tests. I had 34 vials of blood drawn!
To answer the question, "Is CFS a connective tissue disease or is it an autoimmune disease?" I would say most definitely neither! CFS is not a disease, but rather a syndrome. Adrienne Dwello discusses the difference between disease and syndrome here: http://chronicfatigue.about.com/b/2008/07/22/whats-the-difference-between-a-disease-a-syndrome.htm.
There are a lot of theories as to the causes (viral, genetic predisposition, etc.) but in everything I have read, it is very close to mitochondrial disease. I do not know if the etiologies of CFS cause the mitochondria to dysfunction, or the mitochondria are genetically susceptible to the supposed viral causes. Either way, the mitochondria are not functioning properly in CFS/FM.
What I have learned about the ANA, Antibody Nuclear Antigen: well, the test doesn't tell you ****. All it tells is that "something" is going on in the body. In the last 15 years my ANA has jumped around from 1:80, 1:160, 1:320 1:1280 and I can't recall the pattern. What the positive ANA DID do for me was prompt further testing. However, those were all rhemotological tests that all came back negative (RA, Double DNA, Sjogrens, SSa, etc.). I have had all of those post + ANA tests done probably 3 times, too! All negative! I suppose if those were positive somehow, I would not have been dxd with CFS!
Sed Rate measures the amount of inflammation you currently have. It is an older test that measures the rate or how fast the blood cells settle to the bottom. However, the test is flawed. It DOES measure inflammation, but your sedimentation rate can increase if you bumped your arm before the test! So what good are those results? Let me say that is what my CFS doc told me. I think when a sed rate is in the 50's or 60's s when it is bad.
IMO, none of the tests a rheumotologist normally gives you ONCE you have a positive ANA lead you anywhere to CFS.
These are the tests I had done (the 34 vials):
ACE
ACTH
Aldosterone
Angiotensin II
*B12
CBC/Diff*
Comprehensive Metabolic Panel
*Cortisol
*DHEA-S
Fibriogen
Heavy Metals Panel
*IGF-1
*IgGSubclass
Insulin
*Iron Study/TIBC
Lipid Panel*
*NK Cell Activity
*Pregnenolone
*Reverse T3
*T3, Free
T4, Free
*Testosterone F & T
Thrombotic Marker Panel
Thyroglobulin
Thyroid Peroxidase AB
*Total IGG/IGM/IGA
*TSH
*Vitamin D Panel
Estradiol
FSH
LH
*Progesterone
*Candida IgG/IgM/IgA
CMV IgG
CMV IgM
*EBV IgG VCA by IFA
*EBV Early AG (R + D) IgG IFA
*HHV6
*Mycoplasma Pneymonaie
*turned out to be abnormal (low or high)
Gosh, my post probably makes no sense! I am currently taking some meds and having a herxheimer (sp?) rxn. I also started IMIG, immunoglobulin therapy, so my immune system is kicking in for further die-off of the "invaders". I am now getting rid of the yeast (I had a systemic yeast infection--in my blood) and it is hell going through that treatment. Yeast die off is HELL!!! I am also being treated with thyroid meds. I take lost of supplements including cortisol, PREGNENOLONE (greatly improved my brain fog) and mitochondrial enhancements. Next we will address the viruses and I will take and/or do IV therapy for that. I know that will be HELL too as the viruses die off.
Oh, i wanted to also say I read somewhere that taking fish oil/Omega 3 for 6 months will greatly improve the dry eyes. I hope this helps someone. I was MISdiagnosed with a condition by a very good opthamologist. He thought I had kerataconus and would at some point need corneal transplants. So, for 6 months I lived my life believing I would eventually go blind! He said I probaly had Sjogren's....but he did not test me. I already knew it was negative as I had been tested. The dry eyes can be a part of the CFS. I am trying the fish oil.
To answer the question, "Is CFS a connective tissue disease or is it an autoimmune disease?" I would say most definitely neither! CFS is not a disease, but rather a syndrome. Adrienne Dwello discusses the difference between disease and syndrome here: http://chronicfatigue.about.com/b/2008/07/22/whats-the-difference-between-a-disease-a-syndrome.htm.
There are a lot of theories as to the causes (viral, genetic predisposition, etc.) but in everything I have read, it is very close to mitochondrial disease. I do not know if the etiologies of CFS cause the mitochondria to dysfunction, or the mitochondria are genetically susceptible to the supposed viral causes. Either way, the mitochondria are not functioning properly in CFS/FM.
What I have learned about the ANA, Antibody Nuclear Antigen: well, the test doesn't tell you ****. All it tells is that "something" is going on in the body. In the last 15 years my ANA has jumped around from 1:80, 1:160, 1:320 1:1280 and I can't recall the pattern. What the positive ANA DID do for me was prompt further testing. However, those were all rhemotological tests that all came back negative (RA, Double DNA, Sjogrens, SSa, etc.). I have had all of those post + ANA tests done probably 3 times, too! All negative! I suppose if those were positive somehow, I would not have been dxd with CFS!
Sed Rate measures the amount of inflammation you currently have. It is an older test that measures the rate or how fast the blood cells settle to the bottom. However, the test is flawed. It DOES measure inflammation, but your sedimentation rate can increase if you bumped your arm before the test! So what good are those results? Let me say that is what my CFS doc told me. I think when a sed rate is in the 50's or 60's s when it is bad.
IMO, none of the tests a rheumotologist normally gives you ONCE you have a positive ANA lead you anywhere to CFS.
These are the tests I had done (the 34 vials):
ACE
ACTH
Aldosterone
Angiotensin II
*B12
CBC/Diff*
Comprehensive Metabolic Panel
*Cortisol
*DHEA-S
Fibriogen
Heavy Metals Panel
*IGF-1
*IgGSubclass
Insulin
*Iron Study/TIBC
Lipid Panel*
*NK Cell Activity
*Pregnenolone
*Reverse T3
*T3, Free
T4, Free
*Testosterone F & T
Thrombotic Marker Panel
Thyroglobulin
Thyroid Peroxidase AB
*Total IGG/IGM/IGA
*TSH
*Vitamin D Panel
Estradiol
FSH
LH
*Progesterone
*Candida IgG/IgM/IgA
CMV IgG
CMV IgM
*EBV IgG VCA by IFA
*EBV Early AG (R + D) IgG IFA
*HHV6
*Mycoplasma Pneymonaie
*turned out to be abnormal (low or high)
Gosh, my post probably makes no sense! I am currently taking some meds and having a herxheimer (sp?) rxn. I also started IMIG, immunoglobulin therapy, so my immune system is kicking in for further die-off of the "invaders". I am now getting rid of the yeast (I had a systemic yeast infection--in my blood) and it is hell going through that treatment. Yeast die off is HELL!!! I am also being treated with thyroid meds. I take lost of supplements including cortisol, PREGNENOLONE (greatly improved my brain fog) and mitochondrial enhancements. Next we will address the viruses and I will take and/or do IV therapy for that. I know that will be HELL too as the viruses die off.
Oh, i wanted to also say I read somewhere that taking fish oil/Omega 3 for 6 months will greatly improve the dry eyes. I hope this helps someone. I was MISdiagnosed with a condition by a very good opthamologist. He thought I had kerataconus and would at some point need corneal transplants. So, for 6 months I lived my life believing I would eventually go blind! He said I probaly had Sjogren's....but he did not test me. I already knew it was negative as I had been tested. The dry eyes can be a part of the CFS. I am trying the fish oil.
I've googled alot about ANA and patterns. I do know that different labs have different results. That's why if my Rheumy does bloodwork through his lab then I only compare the labwork only when I get it from him. If I get it from my doctor, then I only compare with that one.
I have had the Lupus labwork done for Scleroderma from the first rheumy. He said I do not have that and we was able to rule that out. I do not have Sjogren's. I do not have dry eyes, or dry mouth. My eyes produce good tears and my mouth is never dry.
The double strand for Lupus I've had twice and both times negative.
My sed rate one time only reached 12. When I first got sick it would be a 2. So it's around there somewhere. I can't remember.
I have had the Lupus labwork done for Scleroderma from the first rheumy. He said I do not have that and we was able to rule that out. I do not have Sjogren's. I do not have dry eyes, or dry mouth. My eyes produce good tears and my mouth is never dry.
The double strand for Lupus I've had twice and both times negative.
My sed rate one time only reached 12. When I first got sick it would be a 2. So it's around there somewhere. I can't remember.
Have you ever been tested for Lupus, just to see? I've always tested positive for 10 years, going on 11 this summer.
Have you done a google on ANA patterns and read about them? There is some good information out there on them and what they mean. Keep in mind that different labs sometimes come up with different results. I know that ***** and doesn't seem right but I once had my ANA come back negative and I was in the middle of a flare. The Rheumy I was going to went on to tell me it was all in my head. I was angry. I went back to my Neuro who had taken the first test and he even used the hospital lab instead of his own and it came back 1:1280 which is where it stays. I took that to my next Rheumy appt. and showed him and he checked it again and it came back 1:1280 so him lab had made a mistake. He didn't treat me nicely after that so I ended up firing him. lol
Have you evr had a full lupus panel done on you including checking for sjogrens, schlerderma etc.? Have them check your DSDNA (double stranded DNA) also you sed rate would be good to see. I have a pretty aggresive doctor now although she is very kind and talks with me in depth about everything. It is important to have a doctor that will work with you.
God Bless,
Joni
Have you evr had a full lupus panel done on you including checking for sjogrens, schlerderma etc.? Have them check your DSDNA (double stranded DNA) also you sed rate would be good to see. I have a pretty aggresive doctor now although she is very kind and talks with me in depth about everything. It is important to have a doctor that will work with you.
God Bless,
Joni
My ANA was negative for many years, but after I had a relapse.. that all changed. It ranges from 1:320 to 1:640 (speckled pattern).
I always have copies of my labs. My ANA is 320. Pattern is nucleolar.
Ever since 1998 when I first became ill, the ANA has always been positive. Back then it started at 160. The patterns were always homogenous and speckled. Then as time went on the ANA went up to 320 and then back to 160 and vice a versa. The patterns always stayed those 2 types.
Now last year it went from 320 up to 640 with the patterns the two same things.
Now in January the ANA went back to 320 but the pattern went to one pattern which was nucleolar. Out of 10 years, never had one pattern and never went to 640 for ANA.
But I'm wondering if I'll go back and forth with my ANA like how I used to go back and forth?
Ever since 1998 when I first became ill, the ANA has always been positive. Back then it started at 160. The patterns were always homogenous and speckled. Then as time went on the ANA went up to 320 and then back to 160 and vice a versa. The patterns always stayed those 2 types.
Now last year it went from 320 up to 640 with the patterns the two same things.
Now in January the ANA went back to 320 but the pattern went to one pattern which was nucleolar. Out of 10 years, never had one pattern and never went to 640 for ANA.
But I'm wondering if I'll go back and forth with my ANA like how I used to go back and forth?
Personally, I think we have immune dysfunction at first (like when we get hit by a virus, etc.) and then eventually... we can have an autoimmune disease. That is why I'm so focused on mycoplasma infections. Mycoplasma is an L-form bacteria and as we know... bacteria spreads.
I have come across two of your posts tonight and I have to agree with you on both. I believe and I have watched it in a friend of mine that CFS and Fibro many times turn out to be a lupus or some sort of autoimmune dx over time. I am not trying to take anything away from people with Fibro or CFS at all but I believe it is all in the same pot so to speak as autoimmune. Maybe all the symptoms have just not come up yet. I was first dx'd with Mono, then Fibro, then connective tissue disease and then finally lupus. Doctors just don't know enough about Autoimmune Diseases. It's very upsetting.
Postie, do you knwo what your ANA is and what pattern it is?
Joni
Postie, do you knwo what your ANA is and what pattern it is?
Joni
There is no information linking any type of immune dysfunction to CFS (even though the symptoms are alike and better research may resolve this debate).
The nature of the connective tissue disease causing the rash, would be considered auto-immune (ie. RA, Lupus, Sclerosis, etc.) There are many with CFS whom have gone on to develop auto-immune illnesses, but there is no proof (yet) that CFS itself is one, nor that it causes one.
I believe as the others here, that these illnesses are auto-immune diseases and will one day receive proper identification.
The nature of the connective tissue disease causing the rash, would be considered auto-immune (ie. RA, Lupus, Sclerosis, etc.) There are many with CFS whom have gone on to develop auto-immune illnesses, but there is no proof (yet) that CFS itself is one, nor that it causes one.
I believe as the others here, that these illnesses are auto-immune diseases and will one day receive proper identification.
I understand that CFS is a syndrome.
But since my rash on my face is a connective tissue disease rash, I was wondering if it's anything to do with connective tissue?
I also have positive ANA, but alot of CFS patients have that also.
But since my rash on my face is a connective tissue disease rash, I was wondering if it's anything to do with connective tissue?
I also have positive ANA, but alot of CFS patients have that also.
Technically it is neither. It is not a disease at all according to current medical standards. It is a "syndrome" or a group of symptoms without a known cause. I'm not saying I agree with this though. According to everything a have read it seems to be an infectious and/or neurological and autoimmune condition.
I have a positive ANA titer. I have FM/CFS.
I have to agree with PlateletGal about doctors needing to define exactly what an autoimmune disorder is exactly. My medical dictionary explains it in real broad terms... "A disease produced when the body's normal tolerance of the antigens on its own cells is disrupted." To me that is super broad. It goes on to explain theories...
I think that is what is so difficult for some too. Like cancer, we know what causes cancer. Cells rapidly grow. But FM/CFS, they just don't know. And being in the study of medicine currently, that is the hardest thought. That something out there causes pain, fatigue, and not normal and and fatigue, and "we" don't know what is causing it exactly.
So with CFS, they probably can't define it as either because they don't know what causes it exactly. I will celebrate the day we figure it out though. I pray it's in my lifetime!
I have to agree with PlateletGal about doctors needing to define exactly what an autoimmune disorder is exactly. My medical dictionary explains it in real broad terms... "A disease produced when the body's normal tolerance of the antigens on its own cells is disrupted." To me that is super broad. It goes on to explain theories...
I think that is what is so difficult for some too. Like cancer, we know what causes cancer. Cells rapidly grow. But FM/CFS, they just don't know. And being in the study of medicine currently, that is the hardest thought. That something out there causes pain, fatigue, and not normal and and fatigue, and "we" don't know what is causing it exactly.
So with CFS, they probably can't define it as either because they don't know what causes it exactly. I will celebrate the day we figure it out though. I pray it's in my lifetime!
Tough question and I don't think many people can answer this question with 100% certainty. Of course as you already know... the symptoms of CFS are pretty much the same symptoms as an autoimmune disease. I think that physicians, especially rheumatologists, are going to have to start coming around and redefining what an "autoimmune" disease really is. Some physicians and chiropractors (who have more schooling hours than physicians) believe fibro and CFS are autoimmune conditions. I can tell you that 25% of CFS patients have a positive ANA titer and some "autoimmune" symptoms or an overlapping autoimmune disease.
Have an Answer?
You are reading content posted in the Fibromyalgia 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.
