I was just wondering if any of you have heard of Mixed Connective Tissue Disease (MCTD)?? I am curious if a diagnosis of MCTD is used as well as a diagnosis of CFS/FM or is it used instead of CFS/FM??
Let me try this.........
I have been diagnosed with CFS/FM in December of 2009 after all blood work and tests came back normal. Just within the past few weeks I have gone into a nasty flare, so my doctor did some blood tests. One of the tests came back POSITIVE, although I'm not sure which one. He said since it came back positive, we could be dealing with MCTD, in which it would take the place of the CFS/FM diagnosis. Since he is not totally sure what it is, we are waiting for me to get in to see a Rheumatologist to get a definitive diagnosis.
Does anyone know or have any information on Mixed Connective Tissue Disease?? Anything that I find on the internet about it is really vague and doesn't tell me a whole lot.
Welcome to the forum.
Please check my replies to jerry1000 a few days ago. Even if the symptomology may appear different, there's a connection.
Also check the story of a Psychologist with MCTD and the connection to Mycoplasmas,
at: http://hometown.aol.com/lindartc/index.htm. I read it in the past and it was an eye opener!
Post again with your comments and any questions you may have.
Here's the link that works: http://rheumatic.org/linda2.htm
Not sure what happened with the other one.
On the other hand, should your CFS/FM is in any way connected to
mycoplasmas -which is why I promted you to check my replies to jerry1000-, then please
take time to research this thoroughly. "Mycoplasmas-Stealth Pathogens" a report by
Leslie Taylor, ND is a must read.
I'm hoping to meet with Professor Donald Scott later this year. He produces and edits the Journal of Degenerative Diseases and he lives close to my town.
The research he's done in this area seems to be very extensive!
The Linking Pathogen in Neurosystemic Diseases."
The unofficial estimates for persons with Auto-immune and Neurosystemic Diseases
is a staggering 1 in 5 ! It is reaching epidemic proportions and yet the medical system
is still in the Dark Ages regarding all this. There are very few Medical Doctors, knowledgeable with this Pathogen and the very specialized tests to detect it.
It has been linked to CFS/FM, MS, AIDS, Parkinson’s disease, Wegener’s disease,
Cancer, Alzheimer's, RA, Chron's, Colitis and Diabetes.
Just look at the table of Mycoplasma Pathogens and corresponding Diseases in Leslie
It all looks scary, but knowledge is power, and with becoming more proactive with our Health, we can beat all these nasty diseases.
Dr Garth Nicolson is the authority in treating mycoplasmal infections:
"Nicolson G, Nicolson NL. Diagnosis and treatment of mycoplasmal infections in Gulf War illness-CFIDS patients. Intl J Occup Med Immunol Toxicol 1996;5:69-78."
I gave you enough information to look into. For some reason I can go on forever with some topics! There are other possibilities of course as there are many variables.
Let me know what you think, and please post any time here, with any questions you may
Ok, I finished the article and wow, I am just so overwhelmed with all this lady went or is going through. Do we know for sure what she has?? It seemed like she was diagnosed with a lot of conditions.
Oh by the way, I got my blood tests photocopied from the doctor and this is what came from them.
C Reactive Protein Negative
Rheumatoid Factor Negative
There are others tests that I got done and some were a little higher or lower than normal. For the Positive ANA, I don't know what titer or pattern, as it does not specify. I wonder if the doctor would know that, I'll have to ask next time I go which will be early next week. :)
The test results are not conclusive, as the ANA Positive and Anti-RNP Positive
are not specific to MCTD as a smaller percentage of Lupus, Scleroderma and RA
sufferers, also have the Anti-RNP.
Nevertheless, it really wouldn't make a big difference in anything, as MCTD is like a cross of Lupus and Scleroderma.
Do you also get Raunaud's symptoms sometimes?
Interesting! It just hit me! LDN ( Low Dose Naltrexone) may treat MCTD!
This is something that you could look into. I know a couple people that used LDN
successfully-one for MS and one for FMS. Both had trouble though finding a Dr to prescribe as it is off label (original in regular dosage is for treating addictions) plus there's no money in it.
It's an orphan drug- available in generic now- and in the low dose the cost is a little over $1.00! No Pharmaceutical is interested in this. So finding a LDN friendly or LDN knowledgeable Doctor would make matters much simpler.
There's a lady that maintains a list of Doctors that would prescribe LDN, after telephone
consultations with the patients. I have her email somewhere around, in case you might be interested.
So please do a search, there's tons of info on this. I think it holds a lot of promise
for a wide variety of serious conditions. See list below:
It is quite an extensive list. I've read the research on LDN and what I like about this therapy is that there are virtually no side effects because of the very low dosage.
Let me know what you think. I hope you don't feel that I'm bombarding you with info.
Take care and please post anytime.
Nope, I don't have symptoms of Raynaud's Disease. :) I'm happy about that. :) I will have to check up on Naltrexone, first because I'm in Canada, second, I'm on a whole list of other medications that could possibly cause a reaction, and third if it's hard on the tummy like an NSAID would be I wouldn't be able to take it. But if all of those are taken care of, I definitely would be interested. :) I will talk to my doctor about it and see what he says. :)
You definitely aren't bombarding me with info. I take a look at things when you post them when I am able to with a somewhat clear head. ;) It's all good and I really appreciate it. I thank you for everything that you have posted. :)
Glad you don't have R.D. symptom's. You have more than enough to handle, anyways.
Just a couple points:
Should your Doctor be LDN friendly or LDN literate, chances are that he will be against it!
Unless he's very open minded. Please remember in LDN even if it is in very low dosages,
it is still off label for the conditions we're discussing.
My suggestion would be to check this out thoroughly, go to LDN forums, and get a pulse
of what's going on first before talking to your Doctor.
It has been so far the lack of recognition by the medical authorities and the non-cooperation by the sufferers' Doctors that seem to be the biggest issues.
I know a few medical doctors personally, so I always give them a challenge.
You see Doctors are not scientists, but they have access to privileged information
in medicine and health. So I keep presenting them with complex issues and questions.
I'm waiting now to see if I can get in touch with a Prof, who's an expert in Pathogenic Mycoplasmas. He lives in a close by city to me. This area of medical research is much bigger than what we are allowed to know.
More next time.
to "know". There's something going on.
I'm in Saskatchewan and the biggest Blue Jay fan anyone could ever meet!!! :)
My doctor is very open minded and he really takes my suggestions and researches them if he hasn't heard of what I am talking about. :) But I will research it for myself first so I know what I'm talking about when I ask him about it. ;)
It must be nice to know some doctors personally. ;) I would love to pick the brains of some doctors just to get different views on some stuff. ;) When you do get some info on Pathogenic Mycoplasma, please send it on to me. I would love to learn more. :)
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