While we have a dx of FMS or CFS, most individuals will have several overlapping conditions along with this dx. In order to give others an idea of what symptoms/disorders can tag along with these illnesses, I thought it would be good to share from our own experiences.
How many 'overlappers' do you have?
(Overlapping being things that are chronic such as IBS, RA, Lupus, MS, Lyme, Migraines, RLS, PLMD etc.)
You forgot "0" as a choice. :) I'm honestly not sure if I would consider myself to have any overlapping conditions. I mean, yes, there's the Celiac and a few minor things, but are they truly overlapping any more than a broken bone is overlapping? All of the symptoms that I consider to be potentially-overlapping can be considered normal CFS symptoms.
It's similiar to my list, although my list is getting a little bit smaller. I at least knocked out some chemical sensitivities and the gluten intolerance.
This is exactly why I had asked Dr. Garth Nicolson to join us in October If we have L-form bacteria, the bacteria will obviously continue to mulitply and then we will end up with additional symptoms and/or conditions.
A broken bone will heal though and is not typical of CFS...so no it's not quite the same, lol. Of course, these illnesses come with a host of other problems...some can be attributed as common, others can not. The intent here was to show just how many other symptoms/disorders can come along with them so others would be aware. There are many new members who are wondering "Could this be part of my FMS/CFS?"
Erosive Osteoarthritis (symptoms began in my 20's and present in many family
Thyroid symptoms started in my 20's but tests never showed positive (however I
have 2 sisters with Grave's Disease and then 2 of my 4 children dx with Graves)
Fatigue has been present most of adult life, but no formal diagnosis (actually seems
to have begun after Mono as a teenager)
ITP (Immune Thrombocytopenia Purpura) chronic severe low platelets dx in my 50s
Sjogren's Syndrome presents like Lupus but without the two antibodies to heart and
kidney showing as positive...have very high SSA antibodies for this
FMS recently diagnosed after years of telling my doctors this was not joint pain
I have very high ANA which seems to address all or most of the above
Once I was diagnosed with the blood disorder ITP, it seems most doctors only focused on that because of the severity of it and any other problem or symptom just fell through the cracks. In the 10 years since that diagnosis, I have watched doctor after doctor literally and figuratively back away from me or any of the symptoms I was having. One of the main problems I have had is the fact that steroids as a treatment did not work for me because it increased the pressure in my spinal fluid (they called it Pseudotumor) and almost anything else out there that could help with pain also lowers platelet count...so I couldn't take them. It has been a vicious cycle. Finding Tramadol with this new and horrendous flare has been a miracle for me as it does not seem to lower my platelet count.
I think you are right about a possible miss dx. I don't think we have ALL these different diseases in isolation from each other. I think there is a common denominator that is at the root of all of these things and one day it will be made clear...but probably by serendipity in some unrelated research project!! I believe there is an answer for everything and sometimes it may become more complicated with each new dx. And the more dx given the thicker the diagnostic fog becomes and the further away we may get from a root problem...assuming that I am making a correct assumption. Yet, we also need the validation of each dx to match up with the most helpful treatment...if there is one.. and to satisfy all the medical insurance catagories...and to also help us to know we are not going crazy. Seems to me to be one of those things that may be presently complicated for necessary reasons, yet will find, in the end, a simple answer.
Do most of the different dx, that have been listed by everyone, fall under autoimmunity and high ANA titer? I think it is the case with me. But finding the reason my body turned on itself in the first place seems to be the basic simple answer I need.
"Do most of the different dx, that have been listed by everyone, fall under autoimmunity and high ANA titer? I think it is the case with me."
Yes. 25% of CFS and 29.3% of fibromyalgia patients have a positive ANA titer and "some autoimmune problems"... possibly another autoimmune condition as well.
Here is one theory as to how this can happen and it makes perfect sense in my case:
"When mycoplasmas exit certain cells, such as synovial cells, nerve cells, among others that can be infected, they can stimulate autoimmune response. Our recently published studies demonstrated a possible link between mycoplasmal infections and CFS and FMS, since we found high frequencies of mycoplasmal infections in these patients."
PlateletGal, you definitely have me tying things together. I have been subject to horrendous infections all of my life. As gross as this sounds, I developed an abscess in my right lower jaw about three years ago. The tooth is long dead, and it no longer hurts as such, but I have to lance and drain it at least once a week. I cannot afford a dentist until I get insurance, and am terrified of them after two nightmarish experiences. No doubt the infection has wrecked the jaw bone. And since then I have presented infections throughout my body. The fibro symptoms started around the same time as the abscess.
I'll post later... I think I'm going to take a quick nap. Of course I have a lot to say about this (and other things).... its just finding the time or energy to do so.
But here are some quick facts about CFS/ME:
1) Myalgic Encephalomyelitis is a neurological disease that is very similar to multiple sclerosis (M.S.) and polio (poliomyelitis). Earlier names for M.E. were 'atypical multiple sclerosis' and 'atypical polio.'
2) Myalgic Encephalomyelitis has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disease with the code G.93.3.
3) Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. also causes an inability to maintain bodily homeostasis. M.E. affects all bodily systems. There are more than 60 individual symptoms of M.E.
4) In some cases Myalgic Encephalomyelitis is fatal. (Causes of death in M.E. include heart failure.)
5) Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus. M.E. occurs in epidemics as well as sporadically. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.
6) Myalgic Encephalomyelitis can be more disabling than MS, polio and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic communication.
"Could you tell me the current thinking about CFS? Are they now considering it an autoimmune disorder?"
There are physicians who are now questioning what an autoimmune disease really is. I mean... our immune system is so powerful that if we truly had an "autoimmune" disease, then we would be dead. Why would an autoimmune disease attack only part of our body (like in Sjogren's... the saliva gland) and not our entire body ? And what role do genes play in all of this ?
It seems to me that bacteria has the ability to alter our genes... just as some toxins do. Did you know that CFS and fibro patients should not donate blood ? And some blood donor institutes list CFS and fibro under the "autoimmune" diseases category ? Although others are calling fibro and CFS an "autoimmune disorder" ?
They did a study on patients who received blood from CFS patients.... these patients eventually developed CFS. (Nicolson's website... can't find the link right now).
Here are some links you might be interested in:
http://www.co-cure.org/Kerr-1.htm ---- Gene Expression Subtypes in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
http://bacteriality.com/2007/10/31/family/ --- Bacteria vs. genetic predisposition: the spread of chronic disease in families
http://www.marshallprotocol.com/forum32/3811.html --- Am I Contagious ?
"Is there any evidence that these pathogen killing treatments lower the risk for cancer ? One thing I find fascinating is that since I started my treatment, I’ve been watching a mole on my left ankle slowly disappear."
"I know that people with CFS have a high risk for thyroid cancer. In your opinion, does this have anything to do with mycoplasma infection ?"
"Also, I was wondering whether or not you think mycoplasmas could alter our DNA ?"
PROFESSOR NICOLSON'S REPLY: Excellent questions. My own studies on breast and ovarian cancer indicate that Mycoplasma infections are quite common in advanced cases, and experimental studies indicate that these infections increase the rate of cancer progression to more malignant pheontypes. I presented (by invitation) at the American Academy of Environmental Medicine that Mycoplasma tests, if positive, can be used to identify women who will die and die more quickly from their breast and ovarian cancers. Those women with the infection were at significantly greater risk of dying with highly progressive cancers.
Independent from my studies are those published by the Armed Forces Institute of Pathology in Washington DC indicating that Mycoplasma fermentans can induce carcinogenesis in cultured cells. Treatment of the cell cultures with the appropriate antibiotics, in this case doxycycline, prevented the Mycoplasma-induced carcinogenesis. The investigators went on to show that genetic mutations occurred more commonly in the Mycoplasma-infected cultures, and oncogenes were induced. They Mycoplasma turned out to be a co-factor or promoter not a direct inducer of carcinogenesis. This probably occurs because the intracellular Mycoplasma stimulates the release of Reactive Oxygen Species that can break and modify DNA.
Very interesting. Thank you so much for gathering this together. It has better assisted me in seeing how this illness is at work in the body. I wasn't aware about giving blood, as no one ever mentioned it to me. I did notice that during my last hospitalization, on filling out the paperwork they specifically asked "Do you have Fibromyalgia"...although I didn't see CFS there. Isn't that odd? Unless that would have been something placed under neurological type disorders/illnesses. I believe the last time I donated blood was back in the 90's. Even had they asked about illness, I would have stated no, as I wasn't dx'd back then.
You're welcome. I know this information can be overwhelming, but all of us here know that something is very wrong and obviously something is causing our symptoms and pain. For those looking for answers.... this is a good place to start !
new here and I have been diagnose with CFS post interferon tx from hep C. Found a secondary virus of EBV and HHV6 activated once the treatment of hep C. Hep C gone but the relentless fatigue with all the symptoms that do not allow daily life. I just went through a battery of blood work to rule out standard viurus as HIV, IGA, G, M, Thryroid, RA. There is probably I cant remember at the moment. The only thing that came back positive was the EBV HHV6 both childhood virus. This is just a guess from the standford study that they treat with valcyte. Havnt tried it just yet. Another antiviral. I have been seeing and reading people that have undergone tx of cancer hiv hep c or recovering from a virus as Epstein Barr all remain with the symptoms of CFS.
I feel we are close with people being more vocal but we need research done fast. Too many of us with the same problems and no solutions as to tx. Or is there really only a few of us. We cant tell from Doctors since it is a battle to get them to recognize it. Like I mention I am seeing a CFS infection spec at this point.
I did receive a positive ANA, however I'm pre-med, and have learned everywhere, not to get too worked up over that if they don't find a reason why, because some people just are?!?!
However with that being said, I'm sure that things do link...
3. IBS or another more inflamamatory condition. As of now, I cannot afford to have the procedure done to check
4. Interstitial Cystitis
5. Narcolepsy, which happens to have a few overlaping conditions, and I have many reasons to also believe that it has roots with autoimmunity.
6. I also had mono as a teen, which is questionable too...
Now do they actually say that you cannot give blood if you have FM/CFS??? I just got me a tattoo in memory of my sleep so I can't anyway, but interesting. Now I'm gonna have to go look at that more closely.
You are lucky to be alive! I personally know of two people who had dental infections: 1 went systemic and died, the other had sepsis so bad he nearly died; the infection settled in his lungs and he could barely breathe. Thankfully his wife rushed him to the ER. BOTH were from untreated dental infections.
So, to answer your question, YES, your "symptoms" might possibly due to your untreated infection. Insurance or no insurance, go and get some medical attention!
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