PLEASE DO NOT POST DOCTORS NAMES AND PROTOCOLS!

[Shiela]

"Peer reviewed" medical materials and protocols are NOT approved by all peers (doctors). There is a huge controversy among respected doctors. This has resulted in a discrediting and persecution of doctors who do NOT agree with doctors and materials that claim that Lyme is a rare disease, is easily diagnosed and treated, there is no such thing as chronic lyme. Doctors that disagree with the majority have been persecuted and discredited even though they have a proven track record of success in healing patients. To protect the the livelihood of these brave doctors PLEASE DO NOT POST DOCTORS NAMES OR PROTOCOLS.

Please be aware that there are those on both sides of the controversy that may be reading and posting here.

For more information as to why these doctors are being persecuted, watch the free movie "Under Our Skin" found online at Hulu.

[JerryD]

I appreciate your sensitivity to this issue. I could not tell, from the title, what issue your post referred to ! I am still somewhat foggy on your choice of topics. Are you saying that posters are naming doctors that use controversial methods to treat Lyme disease and that they are subject to some kind of harassment ? Either way you look at this, any post that talks about treatments should identify whether or not the therapy is 'standard' and 'accepted' or 'experimental'.

[MSer102]

I have 3 thoughts about this.

1) Shouldn't it be up to the moderators to decide who can post what? One member doesn't have the right to tell anyone what to post and what not to post.

2) All members have the same right to post doctors names an protocols as someone does to recommends a movie. Same as #1.

3) I'd also like to ask "please don't post doctors names and protocols" for Lyme disease because this is an MS forum and it doesn't belong here. That kind of discussion belongs in a Lyme disease forum. But I defer back to #1.

[Seasha]

3) I'd also like to ask "please don't post doctors names and protocols" for Lyme disease because this is an MS forum and it doesn't belong here. That kind of discussion belongs in a Lyme disease forum. But I defer back to #1.

I am not that familiar with Lyme disease and will not comment on the discussion here, but contrary to what you say, MSer102, any kind of discussion about Lyme disease is welcomed and does belong here. That's why we have the forum of Related Disorders and the sub-forum of Lyme disease. Just want to clear that up

[Shiela]

There are two professional camps that stand in opposition to one another. One group of professionals that adheres to the CDC policy of diagnosing and treating Lyme that promote the idea that it was a rare disease and easy to treat and another group of professionals that are challenging that policy because they have found from experience that it is inaccurate and ineffective.

I agree. Anyone being treated for anything should know whether it is standard, accepted or experimental and additionally should know the possible side affects to be able to weigh that against the benefits.

[Fed Up]

There are two professional camps that stand in opposition to one another. One group of professionals that adheres to the CDC policy of diagnosing and treating Lyme that promote the idea that it was a rare disease and easy to treat and another group of professionals that are challenging that policy because they have found from experience that it is inaccurate and ineffective.

I agree. Anyone being treated for anything should know whether it is standard, accepted or experimental and additionally should know the possible side affects to be able to weigh that against the benefits.

Debating what to post and which 'leaders' to follow, in regards to M.D.'s opinions are as divisive as Politics, I may subscribe to one side and you the other. Which is why there are forums for discussion of medical issues, we all have.

There is no 'Politic' not to mention 'Religion' and a few other forums on this board, i surely know why..it causes in-fighting and bruised egos.

If there are two sides of a medical issue, any ONE of us, may subscribe to the opposite side you have chosen. I might follow the Pope and you might follow Mr. Smith!

Until those 2 sides come together, we ALL have a right to voice what we think we know and what we see. Sharing protocols or anything else, is how we stay informed.

Whatever internet bull we chose to entertain as fact, without doing our own research is simply, more bull!

"The internet has made it possible to get a great education at home or fill your head up with ***. What choice have YOU made...?" Rusty Trichome

And don't ignore the fact that reading of someone's idiotic opinion of something, can be entertaining. And some people do that to entertain without regard to fact.

Shiela, your facts on Lyme Disease are very accurate, factual based and links to back that information up with. I've been reading on Lyme disease for about 2 weeks now, since my neighbors diagnosis of it.

I believe the word generated for chronic is actual "disseminating." and very similar words. Those of us with M.S.'s tend to use 'substitute' words, misspell things and our minds clearly think we said the right word.

So 'picking' on people calling the 'late stage' as chronic or a similar word-...is like going in a room of 'little people' (height challenged) and yelling "Midget Midget." Not everyone will understand something in the same way you or I do.

Putting all information and data 'out there' is the only way to form an 'informed' opinion. What if, there was only one version of the Bible? Medicine is similar to most of life. WE need to Make Our OWN informed opinion.

and having someone here, so informed to post the real facts of Lyme disease, is a rewarding pleasure. However, please, do not expect me to 'simply' read the side you subscribe to. fed

[Shiela]

The reason for asking that doctors names and protocols not be posted is that doctors who have successfully treated Lyme patients have had their licenses suspended. The last thing a Lyme patient needs is to lose his doctor. There are precious few who are willing to treat us. There have been some that have made examples of. It appears to me that this is to intimidate other doctors. One in particular that has treated thousands of children has been taken to court by the Medical Review Board many times costing him thousands upon thousands, despite the pleas and testimonies of the families. If you got Lyme who would you turn to? The standard treatment is 28 days. If you still have symptoms after that you are told that 1) These are just side affects from having had Lyme or 2) You need to see a psychiatrist. This is a real dilemma.

You will find in other Lyme boards this same request made by the administrators and I'm surprised hasn't yet been required here.

This plea to not post doctors names and protocols is not an attempt at censorship. It is to protect those brave and wonderful doctors that put their livelihoods on the line every day to help us.

I hope this helps to explain. Sorry you are fed up.

[Fed Up]

thank You Sheila for such a clear explanation! And again, for teaching me so much about this disease called Lyme.

It is pretty scarey, I was tested for tons of disease and I am a bit confused and cannot recall if I was tested for Lyme's. Waiting for a call back from my M.D. now.

If nothing else, you have made One person more careful.
thanks again, fed

[Jules A]

The reason for asking that doctors names and protocols not be posted is that doctors who have successfully treated Lyme patients have had their licenses suspended. The last thing a Lyme patient needs is to lose his doctor. There are precious few who are willing to treat us. There have been some that have made examples of. It appears to me that this is to intimidate other doctors. One in particular that has treated thousands of children has been taken to court by the Medical Review Board many times costing him thousands upon thousands, despite the pleas and testimonies of the families.

I am horrified that it would appear MS World is condoning and/or endorsing instructions to protect physicians who, at this time, are apparently operating in a manner that is considered a violation of their medical license.

[Shiela]

Thank you. It will help people with Lyme to see this as a legitimate place to seek support.

[hunterd]

I am horrified that it would appear MS World is condoning and/or endorsing instructions to protect physicians who, at this time, are apparently operating in a manner that is considered a violation of their medical license.

The reasoning behind making that explanation a sticky was not condoning or endorsing anyone or anything, it was only made a sticky because I thought it sounded informative. Upon research, I did not know which side is the correct one, therefore I removed this sticky, but the explanation is still very informative.

[Jules A]

The reasoning behind making that explanation a sticky was not condoning or endorsing anyone or anything, it was only made a sticky because I thought it sounded informative. Upon research, I did not know which side is the correct one, therefore I removed this sticky, but the explanation is still very informative.

Much appreciated.

I do plan to continue to follow the research as it unfolds because as we know, and has been mentioned, medicine changes all the time. At least for now I do subscribe to the present treatment protocols that the research supports.