posted
Hi, I was reading another thread about someone seeking a specialist in neuro-lyme.
I'm confused (no pun intended). Doesn't eveerybody with lyme have neuro symptoms? Or not? Or is there a matter of degree? And if it is a matter of degree, when do you cross the line to needing a neurolyme specialist.
And then, what makes a neurolyme person different from an llmd?
My perception of my lyme is that i have a lot of neurological effects -- head pains, migraines, light and sound problems, rining ear, balance issues and migrating body pains. I had an MRI showoing multiple white matter non-specific lessions. I also have psychiatric diagnoses, ptsd, and depression.
My other lyme affected systems are cardiac, and joint pain (though no arthritis) and muscular pain.
Can any one help me clarify what is nuero-lyme vs. "regular" lyme, and what's the difference between an llmd and neurolyme doc?
Karen
Posts: 112 | From RI | Registered: Jan 2007
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bettyg
Unregistered
posted
karen, i can't explain a lot here of the good question you raised, but ....
in the newbie links i sent you after long list of symptoms is info galore on SSDI, disaiblity info. .... look for link on COGNITIVE SKILLS BY MARIAN; discusses ENCAPHOLOGY. may be that will help a bit. too late for the "brainy" ones being on here! that's why i come at this time!
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
yes and no Karenelee,
You need a good experienced llmd who has a high sucess rate. You may need other specialists as well such as nuerologists, psychiatrists, or councilers.
Some llmds are better than others with advanced nuerological stuff.
Most chronic lyme has some nuerologic effect. Some is more noticeable than others. A lot of the time it is actually several different co-infections as well.
I personally beleive if a person has any nuerological symptoms at all it is very important to find a doctor who is concerned about which drugs cross the blood brain barrier and get into the brain. Otherwise with many people the infection might get worse nuerologically.
I think that the biggest thing AFTER finding a good doc is to make sure you are compliant with therapy. Stick with it. A lot of the time when things get too confusing people stop and start therapy too often. That can make things worse.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
What the cat said*)!*)!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Sorry I dont' know how to manage the quote bold thing, so some of this is quote and some of it is me.
quote:Originally posted by caat: You need a good experienced llmd who has a high sucess rate. You may need other specialists as well such as nuerologists, psychiatrists, or councilers.[QUOTE]
ME: Ok -- how do I determine the success rate -- I have to say it was so hard to find an llmd that I'm simply grateful to have one, and hadn't really considered her relative success rate. I do feel very comfortable with her.
CAAT:[QB]drugs cross the blood brain barrier and get into the brain. [QB]
ME: I'm taking doxycycline, 200 mg twice a day -- will that do the trick? I really hope so, becuase I'm at times freaked out by this thing being in my brain, which for me is a lot harder to objectify than say for instance the way it is in my joints. Pain I can deal with, but having my thinking altered messes with my sense of "me"
CAT: [QB]I think that the biggest thing AFTER finding a good doc is to make sure you are compliant with therapy. Stick with it. A lot of the time when things get too confusing people stop and start therapy too often. That can make things worse.
ME: Yup. I have made the committment, I'm sticking with it the best I can. It isn't easy juggling my medication and water and detox and sauna schedule - but I'm doing the best I can. What I find hard is keeping faith/hope as I feel worse with treatment. I think I've mentioned how TIRED I am all the time. Like sleeping sickness. Thanks for the response.
Posts: 112 | From RI | Registered: Jan 2007
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bettyg
Unregistered
posted
KAREN, YOUR PRIVATE MESSAGES OF 60 NOTES MAX IS FULL! time to clean house good ok!
Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients written by Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32
no, i don't have time to do an index of my newbie links/advise since i continue to add to it; plus i no longer have the cognitive skills needed!
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thanks for telling me my pm box was full. Didn't know why I stopped getting pm's. Figured the world was mad at me!
And thanks for the article, it captures me well. And I do know that I could read it again next week and not know I've read it before. Argh!
I think I'll send it to my psychiatrist to let her know where I'm at.
The staying on topic/ on focus thing is really tough on me right now. I'm a business owner and I need focus to get the work done.
I'm going to ask again, in case nobody saw it, but I'd like to know if doxy 200 mg/ twice a day gets into the brain or not. Can anybody point me in the right direction for that info?
Karen
Posts: 112 | From RI | Registered: Jan 2007
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
it should but depends on your weight. Do a search on lymenet for doxycycline pounds mg OR search google groups for doxycycline mg kg
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
sorry that was so quick Karenlee. I can't look for it right now because my brain hurts from artemisinin. If she's rxing 400mg per day then at least she's thinking about the bbb. Sounds GOOD. And you're COMFORTABLE with her- hey that's very good!
>>What I find hard is keeping faith/hope as I feel worse with treatment. I think I've mentioned how TIRED I am all the time. Like sleeping sickness. Thanks for the response.
Has anyone explained "herx" to you? If not, please post another post asking "what is a herx?" It's about toxins the bacteria produce as they die. It will get better!
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
No, I don't think you needs a neuro specilist. I have found that most neuro ducks don't know very much about lyme unfortuantley.
You need a good LLMD who knows which abx's cross the BBB barrior. Most of my symptoms where neuro in nature. My LLMD was very well versed in this but not a specific doc in neuro lyme.
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