thanks for that quote. Do you have a link to that? I find that if I present information to a doctor, the link to the original work is always very helpful.
posted
I felt terrible for Montel and thought his whole point of going on the show was to help people cope with illness by NOT being a victim - I actually found him very inspiring, regardless of his diagnosis
I am confused by the judgement of his treatment choices - since when is 100% of MS cases Lyme? I used to work extensively with adult MS patients in a nursing home as a Speech Language Pathologist before I got sick and while there are many similarities between Lyme and MS, there are also differences.
I just find it very disturbing when people judge my treatment choices so I am very hesitent to judge others - I think Montel is doing the best to his ability.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
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posted
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painted turtle,
Good points in that we don't know what he sought out in his dx process.
I guess, I was expecting them to at least share the research that many MS patients have been found to have chronic infections such as lyme and have been helped by certain abx or other methods of addressing the infections.
True point - long term abx don't work for all lyme patients but they have worked for many.
I've never been on them myself for more than for 2 months so never had the chance to find out - or had major reactions and could not continue. With no LLMD in my state, no one with MS will ever have the chance to explore the possibility that lyme may be a cause, though, unless they leave the state.
Still, if at least identified, even if long-term abx might not work for someone, there are other ways to address infections. I just wish that they had mentioned the importance of ruling out infections. Dr. Oz did list to rule out other dx but with lyme being so hard to identify I think it would have been best to have mentioned that.
I can see that, in a short span of time, not everything could be said and any program will just be one contribution to the overall dialogue.
posted
I experienced crying and inappropriate laughter but was on antibiotics. It eventually stopped.
If I remember correctly didn't IDSA also say that long term antibiotics are just a placebo effect? How do they know this? What scientific proof do they have?
How does one distinguish the fact that Montel is on 27 different medicines, not counting his injections but those aren't considered a placebo effect?
He still is miserable taking all those meds., so how can one say they're helping? I'm a bit confused on this one.
Yes, your right painted turtle, it was a show about living and dealing with illness, or how one copes after finding out they have a disease.
I also admire him for not hiding his feelings. I'm sure they go through the same thing we do when nobody understands what your going through because...YOU LOOK GOOD!!!!!!!!!
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posted
I definitely believe that many cases of MS are Lyme Disease.
I was given a possible MS DX by a neuro and it did not sit right with me. I also was dx with Fibro/ CFS.
As soon as I told the neuro. that my Lyme test came back positive the neurologist dropped me like a hot potato. Point being that many Neorologists will not even consider Lyme at all end of story and if you test positive many will not see or treat you any more.
I also know two woman within the span of one year of each other were diagnosed with MS. Now, these two woman are best friends and travel, hike, and have camped together for years. They both live in a Lyme endemic area of upstate NY and I find it very peculiar that they both have MS.
All the symptoms they have could also be Lyme. They have never been tested for Lyme. Their nerologists don't believe in Lyme.
Point being that many ppl are more fimiliar with MS and pursue that first and then get locked into a MS DX because their doctors either don't want to deal with Lyme or do not believe Chronic Lyme exists.
They still have not proved what causes Lyme and until they do every MS patient should be iformed about the possibility of Lyme.
Another thing to consider is that MS tends to be more prevalent in Lyme endemic areas. WHY???
Of course I am not suggesting that all MS is Lyme. None of us have that proof, but it is highly suggestive that Lyme may be the culprit.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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