To any Lymies that might be posting!!

We all understand that you are trying to help. That is what we are all trying to do. We have very knowledgeable people here on the MS forum. Some of us have even know someone with Lyme. Many of us have been tested out the wazoo for lyme. Not everyone has lyme! There ARE other serous medical conditions out there! You might note that when a new person comes onto the MS forum, they are encouraged to explore many avenues to help them get a CORRECT diagnosis, not just a catch all diagnosis.

I have traveled down the lyme road and back. In my experience the lyme doc didn't even look at me, he just said "Yep, you have Lyme." He did the Igenex test and it came up positive according to their standards. CDC standards was still negative. I was in 100% remission by the time I got in with this doc (something that does not happen with Lyme), yet he still said it had to be Lyme and went on to script me abx, as well as sell me a bunch of other stuff to do this and that. There is a reason "LLMD's" don't take insurance, $$$$$ (I know, I wasted plenty on this). It also seems odd that nearly everyone that goes to see a LLMD gets diagnosed quickly and positively for lyme. Maybe you should trust your doctor or even heaven forbid the CDC and Infectious Diseases Society of America.

I am very sorry if this offends or bothers anyone, or even worse starts another ridiculous debate. But I had to speak my mind, and hope to save someone else some money on chasing a disease that they don't have.

Lysha

Seriously though.....peace, love, and happiness to you all!

I agree too Lysha,

I am one who was tested for lyme after initial confusion. I am now fairly certain that I do not have it. I do however believe that it is a very real disease and believe that a person should be tested if their symptoms and criteria warrants testing, but there is so much controversy that surrounds the disease and the advocacy has in some cases gone overboard.

I joined a lyme group during research and months later one member actually became hostile with me after I announced that I had been diagnosed with definate MS. She decided that SHE was the physician and went on to tell me that I had Lyme and would be sorry if I did not go on iv antibiotics etc. She tried to scare me into not trusting my Neurologist. This is MY life here and I wasn't about to allow her to dictate to me what I should be doing. It got to the point where she bullied me and began to send personal emails after I refused to respond to her posts. I spammed her and the bullying stopped.

I truly do understand what you are saying because on most MS boards you will often get the lyme debate or someone will post about a friend who was diagnosed after 20 years of being diagnosed with MS and so on, but God forbid you go to a lyme group and say the M word  . JMHT (just my humble thoughts)

soulflower* 

Thanks,

soulflower*

KIMC said...

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.

Well, KIMC, it is only a "fact" to Lyme fanatics that "MS and lyme present very similar both clinically and on MRI's."

If the Lyme advocates would READ about the signs and symptoms of MS from credible MS sources  like the National MS Society, they (you?) might understand that,

while, to the uninformed   outsider there seem to be some similarities,

there are really not similarities. 

You say, "I know everyone doesn't have it." Well, then, you are one of the few who come here from the Lyme forum who think that. Most of the rabid Lymies assure us that we don't know what we're talking about, that our neuros are wrong, that even confirmed MS diagnoses should be called into question, that "in fact" we don't have MS, but have Lyme.

 

If you read here long enough, you'll see that even those who are most exasperated with the Lyme fanatics will recommend to people to check out Lyme disease

when indeed their symptoms sound more like Lyme, and not MS.

And again, the real signs and symptoms of MS are not similar to Lyme.

I'm sorry you were so misinformed when you were first seeking a diagnosis.

Hi Soulflower

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. 

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.    

Please remember that this site is for the support of others. People come share their experiences in hopes of helping someone else and we have quite a few people who come here looking for answers in frustration. Not everyone who comes here will end up having MS, but the people on this board do an outstanding job of making suggestions as to what else it might be. None of us are doctors here, we can only go by our experiences. Lyme's disease is just one of the many things that need to be ruled out before an MS dx. It is entirely up to person to talk to their doctors and investigate other possibilities. MS or not I'm here to support anyone who comes here looking for advice or information as the others on this board are.

Lysha, I'm sorry for all you've been through. If you can make it to chat next week, I'd love to catch up on everything.

Take care everyone.

Kimber