Guest guest Posted September 26, 2011 Report Share Posted September 26, 2011 Monmouth County, NJ ................you? Mike Macchiarella Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2011 Report Share Posted September 26, 2011 I live in the metro Atlanta area, but I have the same question. Anyone from the list in the ATL? Thanks, Larry > ** > > > Hi all - > > Is there anyone here who lives in or near NJ? > > It would be great to have someone nearby who gets what I'm dealing with. > > > -- " I ask God not for the grace to see what lies ahead but for the grace to accept whatever comes. " -- Merton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2011 Report Share Posted September 26, 2011 Springfield. Interested in chatting outside the group? > > Monmouth County, NJ ................you? > > Mike Macchiarella > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2011 Report Share Posted September 26, 2011 - do you have a good neurologist? > > Monmouth County, NJ ................you? > > Mike Macchiarella > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2011 Report Share Posted September 27, 2011 No offense but I think what they should be called with MS patients is a " good for nothing " nuerologist. When it comes to treating MS effectively a good nuerologist is a conflict of terms. I've chosen to treat my illness without the murmurings of a good nuerologist. I let nuerologists lead me astray for years by focusing on symptoms and meds before I woke up and began focusing on my health. If I had stayed under the care of those people I may have never found a great LLMD who discovered my Lyme Disease. If I had went to the right MD from the start I may have never gotten as bad as I did. I'm just curious what meds are you taking? -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 I agree 100%. Completely my story too. I personally traveled to the oracle in MN, aka Mayo Clinic, and they were very happy and content to try to treat the symptoms. They didn't once think to ask what has caused the problem. Turns out, a few years later, I learned I had been living with Lyme Disease. Randy > > No offense but I think what they should be called with MS patients is a " good for nothing " neurologist. When it comes to treating MS effectively a good neurologist is a conflict of terms. I've chosen to treat my illness without the murmurings of a good neurologist. I let neurologists lead me astray for years by focusing on symptoms and meds before I woke up and began focusing on my health. If I had stayed under the care of those people I may have never found a great LLMD who discovered my Lyme Disease. If I had went to the right MD from the start I may have never gotten as bad as I did. I'm just curious what meds are you taking? > > -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 How has the Lyme effected your body. I am not sure if all I have is Lyme or possibly Lyme indused MS as well. You? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2011 Report Share Posted October 24, 2011 It's always of interest to me to see other peoples takes on a particular topic when they're objective in their remarks. I can appreciate the sense of security you feel in regard to your nuero. I'd suggest that you look carefully at the labs that were used where your nuero had your tests completed. I've commented very extensively on the absolute blunder of a job that my old nuero did in misdiagnosing me with MS 5yrs ago (in Va btw)....it took me 5yrs to figure out on my own through trial and error in alternative and traditional MS meds and MS therepies that I actually have Lyme Disease. I had several different Lyme tests performed Western Blot, PCR, & that all came back neg. MDL is a good lab and they flat out missed it. It wasn't until I came across my Lyme Literate MD here in NJ and had a routine blood draw that came back positive for Lyme Disease. I'm not gonna preach on this. What I will stress is the importance of being 1000% sure your Lyme tests were performed at a lab that does NOT use an FDA approved Western Blot or any FDA approved Lyme testing methods. It may have saved my life. My Lyme was detected by IgeneX labs..... I also lived in Va and that's where I got the Lyme Disease. I also feel that the likelyhood both you and your husband may have MS is not nearly as likely that you both may have Lyme Disease. Just google Lyme disease misdiagnosed as MS and you'll see for yourself. As for your nurero all I can wish for you is that if you have already been tested for Lyme which I assume you were, it came back neg. If it was an FDA approved Lyme testing method than it sounds like he'd be willing to retest you through a lab that is NOT like IgeneX. If he's not, than find an MD who is. We all owe it to ourselves to be sure. Happy hunting. -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2011 Report Share Posted October 24, 2011 Larry, One of the most accurate and sensitive tests for Lyme (and co-infections) is through IgeneX. My MD, who specializes in treating Lyme, calls my condition " Lyme-induced MS " or " Lyme with an MS presentation. " I consider " MS " to be a descriptive diagnosis (a diagnosis describing a collection of symptoms). Lyme disease could be the root cause of your MS condition. And, yes, a Lyme infection can create " lesions " that show up on an MRI. KC > > > ** > > > > > > It's always of interest to me to see other peoples takes on a particular > > topic when they're objective in their remarks. I can appreciate the sense of > > security you feel in regard to your nuero. I'd suggest that you look > > carefully at the labs that were used where your nuero had your tests > > completed. > > I've commented very extensively on the absolute blunder of a job that my > > old nuero did in misdiagnosing me with MS 5yrs ago (in Va btw)....it took me > > 5yrs to figure out on my own through trial and error in alternative and > > traditional MS meds and MS therepies that I actually have Lyme Disease. I > > had several different Lyme tests performed Western Blot, PCR, & that > > all came back neg. MDL is a good lab and they flat out missed it. It wasn't > > until I came across my Lyme Literate MD here in NJ and had a routine blood > > draw that came back positive for Lyme Disease. > > I'm not gonna preach on this. What I will stress is the importance of being > > 1000% sure your Lyme tests were performed at a lab that does NOT use an FDA > > approved Western Blot or any FDA approved Lyme testing methods. It may have > > saved my life. My Lyme was detected by IgeneX labs..... I also lived in Va > > and that's where I got the Lyme Disease. I also feel that the likelyhood > > both you and your husband may have MS is not nearly as likely that you both > > may have Lyme Disease. > > Just google Lyme disease misdiagnosed as MS and you'll see for yourself. As > > for your nurero all I can wish for you is that if you have already been > > tested for Lyme which I assume you were, it came back neg. If it was an FDA > > approved Lyme testing method than it sounds like he'd be willing to retest > > you through a lab that is NOT like IgeneX. If he's not, than find an MD who > > is. We all owe it to ourselves to be sure. Happy hunting. > > > > -M > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 Larry, the third article at this link is an article I came across that talks about the relationship of white matter lesions produced by Lyme Disease....the first article at this link talks about Lyme being misdiagnosed as MS......... http://www.ncbi.nlm.nih.gov/pubmed/15060815?dopt=Abstract As I've said the lab to use and was used is IgeneX and the test that showed positive for Lyme is the Borrellia Burgdorferi Western Blot. There were several other Lyme tests for coinfections that all came back neg. However both myself and my LLMD that ordered the tests strongly feel that I have a Babesia coinfection based on my symptoms and the fact that medical science (present), can only detect 2 of the 12 known Babesia bacteria so there's over an 80% probability that I have 1 of the 10 other Babesia bacteria they can't detect. The other thing is that Lyme can bring on MS. I may have *both* Lyme and MS too. All I can do is continue to follow BBD (I'm not 100% BBD these days as I used to be), continue taking my Calcium EAP, and believe that all the physical damage is being caused by Chronic Lyme Disease (not MS) and it WILL improve. Best wishes, -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 http://www.ncbi.nlm.nih.gov/pubmed/15060815?dopt=Abstract I wish you the best too. I'm only presenting the possibility of a misdiagnosis of MS. It is possibible and is highly likely if basing your diagnosis on white matter and symptoms that can all be mimiked by Lyme Disease despite what any MD tells you. where all your Lyme tests performed by a lab that isn't married to FDA approved tests. If not you ought to get retested by one that isn't. best wishes, -M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I wonder why some try to make 1 condition into 2? Are _chronic LD_ and _MS_ really two distinct diseases? I contend that MS is a symptom of chronic LD, so the answer is No. Just two names for the same thing. Lastly, what are BBD and EAP? And how do you expect to improve physically, i.e., what measures are you taking? Randy mmacchiarella@... said: The other thing is that Lyme can bring on MS. I may have *both* Lyme and MS too. All I can do is continue to follow BBD (I'm not 100% BBD these days as I used to be), continue taking my Calcium EAP, and believe that all the physical damage is being caused by Chronic Lyme Disease (not MS) and it WILL improve. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 > ...what are BBD and EAP? BBD = Best Bet Diet Calcium EAP = Calcium ethylamino-phosphate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2011 Report Share Posted October 25, 2011 I tend to think of MS as a group of symptoms that come about because of the lesions in the brain. *HOW* we get those lesions is what needs to be resolved in each individual case. Was it Lyme, a chlamydia virus (Google Dr. Perlmutter, the Renegade Neurologist), heavy metals, leaky gut? I'm sure we could all add possibilities to that list. Crystal > > Maybe " MS " per se doesn't exist. For some it is Lyme disease, for others heavy metal toxicity, CCSVI and a myriad of other things that neuros like to clump together and call MS for want of further investigation. In time " MS " may be understood but at the moment they don't really even know what it is. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2011 Report Share Posted October 26, 2011 Thanks to all who posted answers to Larry's question about BBD and EAP. I was struck initially by the amount of healthy discussion the original post is still generating. Larry, I can go into more detail on EAP therepy if you wish but the group has answered accurately. I think it's great that you're sure to get a quick accurate answer in here on most issues. -M Quote Link to comment Share on other sites More sharing options...
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