zandvoort
06-03-2007, 08:22 AM
Hi-
Has anyone ever heard of Dr. Steven Phillips' ideas on the link between MS and Lyme? He is a VERY prominant lyme specialist- president of international lyme association , etc. My firend is a patient of his (NY) and sent me a DVD of a talk he did on the subject at a conference. It was quite fascinating but I have no idea if it makes sense to people 'in the know'. He questions whether the same bacteria that causes Lyme could be a factor in MS and if some patients DX'd with MS may really have lyme. One of his points is that there is really no good test for either and the sx are so similar. (He has many other points too, like the hightened presence of the lyme bacteria in MS patients) I think he said that if a person has a MS dx you may want to try antibiotics first before going to the more serious CRABS.
I found it interesting because I started ny neuro symptoms last year about 1-2 months after going OFF an antibiotic I had been on for about 9 years for acne. I am starting a new neuro doc in Boston tomorrow and I will ask him if he has heard of this theory and what he thinks of it. What would scare me is that it seems as though the treatments are contradictory to each other. For MS, you wamt to suppress you immune system from working overtime and for Lyme you want to boost it. If it is not clear which you have, treating for the wrong thing could really hurt you, I think.
I hope others on this board have some knowledge of this debate because it has made me nervous.
Thanks!
Has anyone ever heard of Dr. Steven Phillips' ideas on the link between MS and Lyme? He is a VERY prominant lyme specialist- president of international lyme association , etc. My firend is a patient of his (NY) and sent me a DVD of a talk he did on the subject at a conference. It was quite fascinating but I have no idea if it makes sense to people 'in the know'. He questions whether the same bacteria that causes Lyme could be a factor in MS and if some patients DX'd with MS may really have lyme. One of his points is that there is really no good test for either and the sx are so similar. (He has many other points too, like the hightened presence of the lyme bacteria in MS patients) I think he said that if a person has a MS dx you may want to try antibiotics first before going to the more serious CRABS.
I found it interesting because I started ny neuro symptoms last year about 1-2 months after going OFF an antibiotic I had been on for about 9 years for acne. I am starting a new neuro doc in Boston tomorrow and I will ask him if he has heard of this theory and what he thinks of it. What would scare me is that it seems as though the treatments are contradictory to each other. For MS, you wamt to suppress you immune system from working overtime and for Lyme you want to boost it. If it is not clear which you have, treating for the wrong thing could really hurt you, I think.
I hope others on this board have some knowledge of this debate because it has made me nervous.
Thanks!
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Bearygood
06-03-2007, 11:09 AM
Not familiar with this doctor and haven't thought of it quite as a debate but I've certainly read a lot about the possibility of misdiagnosis. I would say it's more of a problem with lesser trained doctor who might not be familiar with this as a potential mimicker but most of the time, they try to rule it out. That said, like MS, in some cases this can be pretty tricky to diagnosis as well. Don't be scared though! Ask your doctor if he/she's considered this and what tests were performed to rule it out.
On the other hand, note that the above is coming from someone who does in fact suspect that there are probably other ailments misdiagnosed as MS a lot of the time, or more accurately, that MS may present itself because of other underlying problems that make our immune system go haywire, at least so in some cases. Also that there are thousands of people walking around with this condition who will NEVER know they have it. :)
On the other hand, note that the above is coming from someone who does in fact suspect that there are probably other ailments misdiagnosed as MS a lot of the time, or more accurately, that MS may present itself because of other underlying problems that make our immune system go haywire, at least so in some cases. Also that there are thousands of people walking around with this condition who will NEVER know they have it. :)
MSNik
06-03-2007, 02:28 PM
I agree with Beargood on this one. There is a very affluent lab out in California which specializes in Lyme. Wish I could remember the name of it. Most good Neuros will send Spinal Fluid out there to rule out any possiblity of Lyme, before making a dx of MS. I know mine did..it took about 4 days ( I live on the east coast) but I was definately Lyme ruled out.
Also, just a small note, the anti-biotics you were on for your skin, would have done NOTHING for Lyme disease even if you had it. THe antibiotics for skin diseases, usually the cylines...tetracycline, minocycline, etc are not used for Lyme. And, the antibiotic used for LYme is a VERY high dose, administered for quite a few months. SO, one would have no affect on the other. I was on minicycline for almost 4 years...all it did was give me continual yeast infections! lol. It didnt work on my skin...
I think what Bearygood said, about thousands of people walking around not knowing they have MS is a very important and very true statement. Because it is so hard to dx- and because so many people have such minimal symtoms, not everyone gets on treatment, or even sees a neurologist. Thats actually refreshing. Id hate to think the whole world was suffering the way many of us are on this board.
Hugs,
Nikki
Also, just a small note, the anti-biotics you were on for your skin, would have done NOTHING for Lyme disease even if you had it. THe antibiotics for skin diseases, usually the cylines...tetracycline, minocycline, etc are not used for Lyme. And, the antibiotic used for LYme is a VERY high dose, administered for quite a few months. SO, one would have no affect on the other. I was on minicycline for almost 4 years...all it did was give me continual yeast infections! lol. It didnt work on my skin...
I think what Bearygood said, about thousands of people walking around not knowing they have MS is a very important and very true statement. Because it is so hard to dx- and because so many people have such minimal symtoms, not everyone gets on treatment, or even sees a neurologist. Thats actually refreshing. Id hate to think the whole world was suffering the way many of us are on this board.
Hugs,
Nikki
zandvoort
06-03-2007, 06:33 PM
Thanks a bunch guys- Nikki- Igenex is the lab you were looking for. I am hoping my new neuro will use that test as well. I was not sure if it was CSF or blood they test? It is great to hear it is that easy to rule out before you give an MS diagnosis.:)
MSNik
06-04-2007, 10:05 AM
That IS IT, thank you! I couldnt remember. I had mine sent with CSF; II am positive that the Spinal Fluid went to that lab. That was the only reason I agreed to the LP to begin with. Lyme, in my part of the country is pretty significant. I really wanted to make sure it was nothing that simple to dx before I started worrying about what else it could be... turned out lyme would have been easier to manage...lol.
Good luck, keep us posted, ok?
Nikki
Good luck, keep us posted, ok?
Nikki