I was trying to help someone who is questioning her diagnosis ( or lack of) by telling what happened to me and offering a suggestion for another route to investigate. It is a fact that MS and lyme present very similar both clinically and on MRIs. I don't think my recomendation to check out lyme is off the wall, nor am I trying to recruit Msers over to lyme.
I don't go around telling people who are not questioning their diagnosis or asking for imput on what else could this be? that they have lyme.
I wish someone had made the suggestion to me to check out lyme 7 years ago. Maybe I would not have the problems I have now.
I don't know why some here get so upset about the suggestion of lyme. I know everyone doesn't have it.
Thank you for your post. It is good to know that not everyone considers those who have lyme and makes the suggestion to check out lyme is not a fanatic. I have been there and want to help others who are asking.
Your question about having lyme and developing into MS (ALS, and other diseases) is one that has come up on the lyme board. I think I may fit into this category. Alot of people (and articles have been published by MDs) who believe that this is a possibility. I think even MS researchers agree that there is a trigger that sets MS in motion. They just have not been able to determine what that trigger is. I have read that some researchers think it is a virus, but many think a bacteria is also a possibility. Dr Steven Phillips MD has written some articles on what he believes is a connection between lyme and MS.
As far as the injection drugs for MS treatment, I don't know of any studies as far as how they would affect lyme. From what I understand the CRAB drugs suppress the immune system and treatment of lyme is exactly the opposite, whereas you kill the bacteria with abx, but build the immune system so it can eventually fight off the bacteria itself. I think you need a healthy immune system to fight off other diseases, bacteria and viruses.
I know of people who were very ill with supposedly another disease and now are well. I don't think this is the case all the time but why not turn over every stone.
I think it is good to share our experiences. Discussion is good. Not everyone will agree but I hope we can share our experiences and ideas and maybe help each other. We should all question our Drs and keep seeking good health. They don't have all the answers all the time. I have learned you have to be your own advocate.
What I can't for the life of me understand is WHY we have people from the LYME BOARD on the MS BOARD. What is it about the MS members that Lyme members don't trust? Do you think we WANT to dx people with MS? Do you feel we aren't smart enough to encourage people to exhaust all other testing before they are dx'd which is what DR's do before they will dx you anyway. That's the difference between Lymies and MS'ers. We hope that your dx's ISN'T MS. The Lymies sniff around for any hint of a Lyme dx's so they can scream their battle cry of "IT'S LYME! IT'S LYME!"
If Lymies hung around long enough before making comments, they would see that an MS dx's isn't one that is handed out to any pt that walks in the Dr's office. It takes years sometimes to get a definite dx's and to start treatment. Just ask some of our members who are in limbo. This isn't me speculating about the process. It's a fact and one that I've personally gone through.
We aren't in a 3rd world country that is relegated to back alley treatment. We have licensed medical practioners and real treatment standards even though the Lymies would try and convince you otherwise.
Post Edited (DBG) : 10/10/2006 12:56:09 PM (GMT-6)
I was dx with MS 7 years ago. I have lyme also, so I read both boards. I have every right to be here. I don't know why some here are so defensive. When people come to the lyme board (MSers included) I have only seen them welcomed and all questions answered respectfully.
I don't know why you are using words like fanatic, rabid, and claiming we don't think you are smart enough and in general being hostile. It is uncalled for. When I posted I did not use that type of language, nor did I say to anyone that you don't have MS I know what you have and it is lyme. Respect others right to ask what else this could this be. Not everyone on this board has been diagnosed with MS. People are seeking information.
People have a right to ask questions, and we have a right to answer. I have been through h*ll and I don't want anyone to have either of these diseases and if you don't either you would encourage people to explore all possibilities and stop the hostile put down of any suggestion that doesn't match a MS dx.