Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Lyme disease is associated with MS and fibromyelagia. I was diagnosed with MS in Apr 2004 and again in Sep 2006. I've had much pain in my left buttocks and left leg. I was diagnosed with Lyme disease in Mar 2008 and started antibiotic therapy. My brother has fibromyelagia. Lyme is a terribly complex disease that has connections to many dIseases such as Alzheimer's, Parkinson's, Chronic fatigue, ALS, MS, and others. It's a disease that attacks multiple systems making it virtually impossible to detect, diagnose, and treat. For a decent list of symptoms see the Canadian Lyme website www.canlyme.com For a trailer for the new Lyme documentary " Under Our Skin " 5 min 26 sec a CNN news clip on Lyme 2 min Points I've learned from my battle with Lyme 1) Normal physicians are not qualified or able to diagnose or treat Lyme. Go to www.ILADS.org for help here 2) NONE of the tests are accurate 3) Not everyone gets the classic " bulls eye " rash 4) Many people end up driving a few hundred miles to their Lyme Literate Medical Doctors (LLMDs) > > > > I am in the process of ruling in or out ms. But my question is has > anyone been diagnosied with fibromyalgia and then later in years found > to have ms? And has anyone had the feeling of siatica nerve problems > and it wasn't? or dose this go with the ms? Thank you so very much. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Nerve pain is part of ms, when the myelin sheath is damaged we can get bad nerve pain, I would say it is ms. I have neuralgia pain again at the moment, it spikes down my neck or up from my hand up my arm. I have tried everything to relieve it, acupuncture and cayenne rub being the best so far. If anybody has another good idea please let me know, thank you. . I am in the process of ruling in or out ms. But my question is has anyone been diagnosied with fibromyalgia and then later in years found to have ms? And has anyone had the feeling of siatica nerve problems and it wasn't? or dose this go with the ms? Thank you so very much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 My brain and spinal cord have many lesions shown by my MRIs. My left buttocks and left leg has much pain. My Lyme physician says the pain is from a large lesions on my lower spinal cord. Sometimes the pain was so intense at night it would wake me up and I'd do my Yosemite Sam impersonation! Just all sorts of intense pain! I still have some, but it does seem to be going away. > > Nerve pain is part of ms, when the myelin sheath is damaged we can get bad nerve pain, I would say it is ms. I have neuralgia pain again at the moment, it spikes down my neck or up from my hand up my arm. > I have tried everything to relieve it, acupuncture and cayenne rub being the best so far. If anybody has another good idea please let me know, thank you. > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 I think Fibromyalgia is dx'd when the doctors have NO idea what is wrong with you! It is like a blanket disease to them. MS can be dx with a 98% probability of being correct if a lumbar puncture along with the MRIs. Lyme can usually be dx'd via different type of blood work. False negs/pos are common, but this is why different blood work is required. Roe > > MS and Fibromyalgia do have a lot of similar symptoms. I don't know > about diagnosis but they are a lot the same in some ways. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Try chelated calcium/magnesium/potassium EAP. It settles your nerves. That's the best thing about taking this stuff. It also works on myelin repair. -- In mscured , " Brosta " wrote: > > Nerve pain is part of ms, when the myelin sheath is damaged we can get bad nerve pain, I would say it is ms. I have neuralgia pain again at the moment, it spikes down my neck or up from my hand up my arm. > I have tried everything to relieve it, acupuncture and cayenne rub being the best so far. If anybody has another good idea please let me know, thank you. > . > I am in the process of ruling in or out ms. But my question is has > anyone been diagnosied with fibromyalgia and then later in years found > to have ms? And has anyone had the feeling of siatica nerve problems > and it wasn't? or dose this go with the ms? Thank you so very much. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Hello Roe, No doubt, on this site, who was dianosed twice with M/S, and is now undergoing therapy for Lyme disease would disagree that blood tests are the way to determine if one has Lyme disease or M/S. Personally, I don't see any difference. ...RP - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 Thank you , I take all of these but not sure about EAP, did you mean to say EPA? I also take B6 another good vitamin to settle nerves. . Try chelated calcium/magnesium/potassium EAP. It settles your nerves. That's the best thing about taking this stuff. It also works on myelin repair. Try chelated calcium/magnesium/potassium EAP. It settles your nerves. That's the best thing about taking this stuff. It also works on myelin repair. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 Reading the vial of the German intravenous drug I call EAP, it says (2-aminoethyl) dihydrogenphosphat Calciumsalz. There are several minor variations on the name. I've seen the name Americanized to ethyl amino phosphate or (EAP). The NMSS web page no longer has any info on it. They used to give stern warnings how the protocol used strong immunosuppressants (sp?). Isn't that what Rebif does?? Out of all of the MS drugs I took, The EAP the only one that helped at all. For a while it gave me some extra energy. I took the intravenous version as well as LOTS of the capsules! The doc had me on batches of 5 three times a day. My right hand still quit working though. When the right hand had problems my intravenous dose was increased from 10mL three times per week to 20mL three times per week. The right hand problems were a major driver towards a Lyme disease diagnosis. > > Thank you , I take all of these but not sure about EAP, did you mean to say EPA? > I also take B6 another good vitamin to settle nerves. > . > > Try chelated calcium/magnesium/potassium EAP. It settles your > nerves. That's the best thing about taking this stuff. It also works > on myelin repair. Try chelated calcium/magnesium/potassium EAP. It settles your > nerves. That's the best thing about taking this stuff. It also works > on myelin repair. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 It's sometimes referred to as AEP, but is commonly called EAP. 2- aminoethanol phosphate, also called colamine phosphate or EAP. The EAP is a transporter for the minerals, the chelation makes them stick to the receptor sites. I get a totally different effect with this mineral blend than I do with ordinary mineral supplementsa. > > Thank you , I take all of these but not sure about EAP, did you mean to say EPA? > I also take B6 another good vitamin to settle nerves. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2008 Report Share Posted September 27, 2008 Were you taking Mynax tabs? > > Reading the vial of the German intravenous drug I call EAP, it says For a while it gave me some extra energy. I took the > intravenous version as well as LOTS of the capsules! The doc had me > on batches of 5 three times a day. My right hand still quit working > though. When the right hand had problems my intravenous dose was > increased from 10mL three times per week to 20mL three times per week. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 That is why I said they often show false pos and neg via blood tests and why they typically do many different blood work to compare. I have yet to be told by a doctor that you have " for sure, without a doubt, 100% " MS because they don't have that accurate of a test for any of this. They can only say - with the results thus far from testing, your MS dx is 80% accurate. Roe No doubt, on this site, who was dianosed twice with M/S, and is now undergoing therapy for Lyme disease would disagree that blood tests are the way to determine if one has Lyme disease or M/S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Two of the neurologists I saw told me they are just about positive I have MS but because my MRIs didn't show clear lesions, they would not write MS down as a diagnosis. They would only write optic neuritis, which was seen though the eye with a light and through abnormal visual evoked poetntials. They didn't even care that I can't read with my right (bad) eye. They just wanted to see what their tests said... One neurologist did give me the MS diagnosis, but he is retired and from a different state and I don't think that will be enough to get SSDI, without MRIs or spinal tap evidence. Ironically, my insurance has me down as having MS because the one neurologist gave me that diagnosis and one opthalmologist circled MS on his form that he sent into my insurance. So I am in this catch-22. I haven't been able to get private disabilty insurance or better health insurance because the health insurance has me down as having MS (a pre-existing condition), but I probably can't get SSDI because I have no current neuro willing to write MS as a diagnosis in the absence of lesions. My only MRIs were done two years ago when my symptoms first started, but I have become so afraid of what doctors offer, that I fear getting the gadolinium contrast to get new MRIs. Plus the new MRIs, may continue to show no lesions, as Roes' have not. It is reall a weird place to be in. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.