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Posted 12/28/2013 5:51 PM (GMT 0)
I am a mod for the fibromyalgia forum. We share many of the same symptoms with MS and other illnesses. We put together a good post that lists other illnesses that should be ruled out by your doctors and I'm sure they are doing just that with all the blood work and tests that they run on you. If you feel that you may be misdiagnosed, we have forums that cover most of these illnesses on HealingWell. The members and mods there will be happy to help you with any questions you might have.

For the Lyme people that frequent the MS forum, I know you are trying to help, but it's very frustrating and frightening to be told that you might be misdiagnosed....when in all acutality you haven't been! We have had Lyme people come into the fibro forum doing this same thing. I know your heart is in the right place but please post in the Lyme forum. You can help more people there. We are letting MS people know that the symptoms of MS are similar to other illnesses. Thank you in advance.

Below is the link that will show you illnesses that share many of the same symptoms.

https://www.healingwell.com/community/default.aspx?f=24&m=1607922

Sherrine
Posted 12/29/2013 4:18 PM (GMT 0)
Hi Sherrine...

I understand...it's just that many of us with Lyme have also been misdiagnosed with MS, and led down a very destructive path of steroids, etc., which can cause extreme harm to a person with Lyme.

When a person asks "what else" their condition might be, I think it would be irresponsible not to post.

Lyme tests are not all equal...I was misdiagnosed for years because of the mainstream, inadequate Lyme tests which are routinely recommended, allowing the infection to progress to the point that I became homebound for 5 years, and nearly died.

It is not a road that I want someone else to go down, because they disregarded their possible Lyme Disease based on inadequate testing or a doctors misinformation. Unfortunately, in Lyme world, we cannot blindly trust that the average doctor is properly informed. Knowledge is power...and it may be the difference between abilty vs. disability, or even life and death for someone.

I am new to the forum and don't mean to make waves...just feel very strongly about this point, as we are here to share our knowledge with everyone involved...in my opinion this is how we learn. If it scares someone, so be it...I wish someone had scared me with the truth when I first became ill!
Posted 12/29/2013 4:22 PM (GMT 0)
Just another thought...the method by which I became well from Lyme (mild hyperbaric) is also very effective for MS...which is why I posted in the first place...
Posted 12/30/2013 1:21 AM (GMT 0)
Phoiph,

Please understand, this forum is for people seeking answers to MS questions. We regularly encourage members to check for Lyme disease. I understand that Lyme and MS share many symptoms. What we often get is people coming here telling us that MS doesn't exist. It can cause issues and it has caused MS members to leave the board entirely. I'd would love this to be a safe place for people to ask questions about MS.

Thank you for your understanding and cooperation. Best of luck to you.
Posted 12/30/2013 4:07 PM (GMT 0)

 

With all due respect:

My feeling is that many people post on your forums because diseases like MS, Lyme and Fibro require a very complex differential diagnosis...which is difficult and confusing for the patient and doctor to navigate...so people come to the boards to gather, synthesize, compare, and clarify this varied information, and would also like a "safe place" to do so.

Consider this recent post on your forum from someone with a nebulous MS diagnosis:

"When we come onto these forums we have a lot of questions.  So if instead of only asking stuff about MS we ask about Lyme we should not feel as if we are making a huge mistake.  We are all learning and are not as far along a some of you.

 

So please be patient with us if we suggest that all of these signs of illness might be something else other than MS...

 

Thanks!"

 

Also, the thread I originally responded to ("What Else Causes Demyelination"), did not include Lyme as a possible cause on the list posted:  https://www.healingwell.com/community/default.aspx?f=32&m=2911396

Most importantly, the reason  I originally responded to the thread was to offer information on mHBOT (mild hyperbaric), which is a valuable treatment for both MS and Lyme. 

  

With that, I will, of course, respect your wishes to refrain from further posts on your forum if that is the consensus of your members...

 

 



 

Post Edited (phoiph) : 12/30/2013 10:01:31 AM (GMT-7)

Posted 12/30/2013 5:47 PM (GMT 0)
HealingWell has an MS forum and also a Lyme forum. You discuss Lyme on your forum and MS is discussed on this forum. Members are told on this forum, when asking about their symptoms, that Lyme is a possibility, along with a few other illnesses. Gretchen just did that the other day. Members should then go to the Lyme forum to get the very best answers to their questions about Lyme. The MS forum is for people who either have MS or are searching to see if they have MS.

I truly think the Lyme forum would not like people with MS, lupus, or fibromyalgia coming in and saying that you very well could have their illness and not Lyme! You know what you have and are dealing with it the best that you can. This can be offensive. So it's best to stay in the forums of your illnesses to get the best information and to help others too.

By the way, we had a fibromyalgia member who had been misdiagnosed with Lyme and had been taking the antibiotics and other drugs for Lyme. She was not happy about that. So this can go both ways. We have to try to have good doctors and have trust in them too. This is why we let members know "what else it could be".

Thank you for your understanding.

Sherrine
Posted 12/31/2013 5:26 PM (GMT 0)
       i have been dealing with ms for many years.  i read afew forums now and then, but stopped coming here for the same reason i am leaving now.  

 nobody posts about ms. nobody posts about treatments coming.  neuros will test for lyme and then 99% of the time, it will not be brought up again. been there, dont need to go there again. 

Posted 12/31/2013 5:36 PM (GMT 0)
PPM Guy, please don't leave! We are working on changing this, as you can see in the past posts in the last few days. This forum needs to be all about MS and it will be with everyone's help. Gretchen and I are working on that right now.

If you have any new info about studies or anything your doctor has shared with you, please share it here. We have to start being here for MS patients. Thanks!

Sherrine
Posted 12/31/2013 9:31 PM (GMT 0)
PPM guy,

I understand your frustration. It's awful that we have Lyme posters here all of the time. I would NEVER think to go to the Lyme board and tell people they need to drop their doctors and see an MS Specialist. For some reason, Lyme members think it is perfectly acceptable to do that here!!!

As if they are the only people passionate about their illness! Please consider staying! I would like to try to get this board back to the place it was a few years ago. We can try!!
Posted 1/4/2014 10:16 PM (GMT 0)
Sherrine's words "For the Lyme people that frequent the MS forum, I know you are trying to help, but it's very frustrating and frightening to be told that you might be misdiagnosed....when in all acutality you haven't been! We have had Lyme people come into the fibro forum doing this same thing. I know your heart is in the right place but please post in the Lyme forum. You can help more people there. We are letting MS people know that the symptoms of MS are similar to other illnesses. Thank you in advance."
Sherrine, what makes you think that people with autoimmune diseases such as MS are not misdiagnosed? Am I reading what you are saying wrong? My husband was misdiagnosed, in the sense that he was not diagnosed with Lyme along with his ALS symptoms. If people diagnosed with Lyme do not offer what they know on this site, how would they even know to go check out Lyme as a possibility to their illness. You say you are letting people know that the symptoms of MS are similar to other illnesses. Is Lyme one of them? I hope so. I have read a lot of posts and haven't seen anyone outside of the Lyme community mention it. It would great if you could do this.
Posted 1/4/2014 10:22 PM (GMT 0)
Sherrine said "I truly think the Lyme forum would not like people with MS, lupus, or fibromyalgia coming in and saying that you very well could have their illness and not Lyme! You know what you have and are dealing with it the best that you can. This can be offensive. So it's best to stay in the forums of your illnesses to get the best information and to help others too."
I would be happy if people on the MS board came and shared with us on the Lyme board. Obviously, we would debate the issue because many of us were tested for Lyme and the tests came out positive. There isn't any test for MS, Parkinson's, ALS, etc. They don't know what causes many of these autoimmune diseases. I don't agree with you. People don't always know what they have and doctors don't always know.
Posted 1/4/2014 10:36 PM (GMT 0)
Gretchen, if you regularly encourage members to check for Lyme, that is wonderful. The problem though is that testing done in most labs is not accurate or people can test postive- as my husband was - but according to CDC'S guidelines the testing is negative for Lyme. People need to use Igenex Lab for the best testing done.
I do not post on this site unless the subject of Lyme comes up. We are not trying to play a game..just trying to help as you say. If just one person is helped - as it has already happened for me - then it's worth it. There can be other causes for autoimmune diseases - such as familial - for ALS, but I think a lot of people are infected by Borrelia and coinfections. Unless a doctor tells me the cause of an illness, I will be skeptical. This is why I did my own research for my husband.
Posted 1/4/2014 10:43 PM (GMT 0)
Cat,

I am asking you to not post to this board. Period. You are a relatively new member and you have not witnessed the havoc this sort of posting causes.

Again, I am locking this post.
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