posted
I have been working with Lyme for around five years now, with minimal progress and my symptoms are largely neurological.
My lyme dr. said I am not a typical Lymie. I have tried TONS and TONS of herbs and abx and am currently on mHBOT.
My dr. wants to try different seizure medications and I am now wondering if I shouldn't see a neurologist. I get the oddest sickish head sensations and often feel like I could go into some kind of seizure or spasm sometimes even death.
I did try one seizure med without much luck. I also did see a neurologist in MX that wanted to put me on Lexapro and I am not depressed.
I just thought maybe if I nailed a neurologist here in the states that was into immunology he could help me?
I know Johns Hopkins is going into the arms of the "enemy" but I did see there is some that even work with lyme.
I know he won't believe in chronic lyme, but maybe he could help with symptoms since hitting the infection etc. isn't helping?
Or is this just a waste of money?? GRRRRRR I am about to rip out what little bit of hair is left!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
I can't think of one, Robin, but there may be one.
You never know what you will find. I had to see a neurologist here in Missouri a few years ago and when he found out I had had Lyme, he said, "Oh, that affects EVERYTHING."
He's from India .. so find someone educated elsewhere, right!?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
True - I have a doctor from Russia - they're into natural medicine there - we get along great!
Posts: 13116 | From San Francisco | Registered: May 2006
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Was a indian oncologists that pointed me in right direction too...oh jordana helped me name them gerbilologists. .a neuro told i was demylinating with a emg ... and said it wasnt dirty enough for als
another said lesions were not big enough for ms ... i am glad i didnt do immunosuppressive drugs ..
.i guess its good for diagnostic ...i did see a special where a ny lady was implanting electrostim in brain with under scalp lithium battery but that was for depression
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Understand what it is that a neurologist does and, specifically, what the one you intend to see does.
Do not go in and expect them to treat as you might imagine. Generally, neurologists have zero to do with immunology. Absolutely Zero. It's just not at all what they do or how they work. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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posted
I would go if I was interested in one good med or two for neuro symptoms. For example, topamax can work wonders for migraines. I'm not in the market quite yet for high level brain pharma mostly because the side effects can be just as bad as Lyme is.
But. If you think there might be something there for you why not try it?
Um. I was gonna say something else...oh. Lexapro is sometimes prescribed for pain syndromes. Sometimes changing a person's brain chemistry can help reboot normal pain signals, sleep and so on. Although the best drug for this by far and proven over like 70 years is amitriptyline.
Posts: 2057 | From Florida | Registered: Feb 2015
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Tincup
Honored Contributor (10K+ posts)
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posted
Foxy- So sorry you are having such problems.
I am not allowed to post the list here (no names rule) or even a link to it, but I have a list of neuro LLMD's, some on the east coast. One that you'd probably like a lot, works with alternative stuff and won't freak out with your treatment protocol, and that takes insurance.
At all costs stay away from Hopkins! Please. If there were anyone good there for you to see I'd tell you. There isn't.
I don't PM, sorry, but you are welcome to email me for the info.
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I don't think it's crazy but I would ask your LLMD, local Lyme support group, etc. for recommendations for a Lyme friendly neuro.
They do have access to testing that your LLMD doesn't, such as an EEG. But do go in with limited expectations.
JHH has an excellent neurology dept. But I don't have experience with how they would be with Lyme. I'm guessing not great.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Catgirl
Frequent Contributor (5K+ posts)
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posted
The one I saw was a total jerk and a complete waste of my time and money.
Have you worked on heavy metals or parasites yet (both improved my neuro symptoms)?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I'm with cat. the most painful test I ever had was a muscle test by a neurologist. he said I was extremely stressed and it was causing the lyme and migraines. didn't give me anything.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I did briefly talk to a secretary @ Hopkins and he didn't even blink an eye when I mentioned Lyme.
The neuro Dr. I thought about seeing mentions Lyme/Aids/syphilis as his areas of interest.
My reasoning is this. I have a Lyme dr. that I like and won't quit, but he admitted to me that I am now a guinea pig and he is simply throwing drugs at me.
This makes me nervous that he is winging seizure drugs my way without much experience.
I thought maybe a neurologist would know a bit more which drugs to take without so much "trial and error" (this is my brain people...)AND..........
I really don't just want to see any old neurologist. I have been to an ordinary one and after a clean EEG he thought hmmm antidepressant. (NOT) maaaaaybe Hopkins would know something a little more than the average neurologist??????? I DON'T KNOW!!! maybe it IS time to look for a zebra instead of kickin' the old lyme horse...
Jordana, I know SSRI's can sometimes help nerve pain, but alas, my symptoms aren't painful. They are just scary and miserable. But maybe I should try one anyway.
my dr. said my symptoms are so weird he worries other drs wouldn't believe me. He said he believes me because I don't do a good job describing them, isn't he as wise as Solomon?
Thanks a million for chipping in folks! Your experience is invaluable!! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Keebler
Honored Contributor (25K+ posts)
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posted
- From someone who has made similar assumptions, it's vital to be clear that just because a doctor has "an interest" in lyme that does not mean they have the training, experience and all that is required to treat someone with complicated presentation.
Be very careful with assumptions. I cannot even count how many clobbered me. The homework involved in vetting a doctor is a major undertaking. Yet, it's worth it and could ultimately save you much time, expense and frustration.
Make no assumption. Research fully from a wide array of sources before making any decision. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you "have a Lyme dr. that I like and won't quit, but he admitted to me that I am now a guinea pig and he is simply throwing drugs at me." (end quote)
This is not about his likability. It's about you obtaining the best care possible.
Why not find an ILADS educated LLMD or LL ND who is more advanced in skills, experience, to suit your medical needs?
As for addressing comfort / symptoms, there are also far better ways to do it - often - than chasing down the pharmaceuticals that mask symptoms and are - often - very hard on the liver, though you would not need a neurologist for that task, most regular doctors are more than willing to prescribe an Rx to mask symptoms forever.
An ILADS educated LL ND may be the kind of doctor to seek out for a good array of options for both addressing symptom relief in a safe manner and also facing down TBD. -
[ 07-14-2016, 03:56 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Backing up to your posting topic " am I stupid to . . . "
Stupidity has nothing to do with it. It may be that not everyone shares an idea but I don't think any ideas, or any people, are stupid.
In all kindness - and unable to say this as elegantly as I'd like, what some may call "stupidity" - in general - usually a state where one is in the dark in one or more ways.
Or where a totally unforeseen outcome (at least to the action figure in the scene) seems to sneak up from behind.
The word is highly demeaning and, so, no, you are not stupid. Some moves can sure be mistakes but that still does not mean stupidity is involved.
I cringe anytime anyone is ever called "stupid" - so I try to make the world a better place by squelching that awful derogatory slam where ever possible.
However, it is usually a wise move to do a lot of homework before making any decisions to become as educated as possible regarding options and study the experiences of those who have been in similar circumstances.
Be sure to talk to ALL the lyme support groups within at least a hundred miles of any doctor considered. And with the leaders of all state organizations within that same distance, for a start.
I also still think that having gone through the ILADS physician traingin program, knowing all the ILADS presentations over the years really matters - and being up to date with how certain thoughts have changed / progressed with time - and who is doing what regarding ILADS connections (Sapi, MacDonald, etc).
Each LLMD and LL ND practices differently and each patient's path varies. But there is enormous value in the foundation that ILADS provides. -
[ 07-14-2016, 05:12 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- You say that your "lyme dr. said I am not a typical Lymie . . . " (end quote)
Regarding labels that can hurt, is also troubling that your doctor refers to you as a caricature. While he may mean that in a heartfelt way, if he's a good doctor, he must be aware how insulting that term can when used out in the world.
And if he uses it, "licenses" it, that perpetuates the pain that can be caused when used outside of his office. Just to consider:
Please do not call me “Lymie” -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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posted
In Neurology World, "scary and miserable" often qualifies as "nerve pain." Buzzing, formication, nerve shakes, "numbness and tingling ( ha ha, wouldn't it be great if it was just numbness, and tingling?) " -- all this to them falls under the category of "nerve pain."
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Jordana, that is interesting... hmmm I do have nerve shakes, and nerve "zings" or pricks that hurt, but I am most concerned about my head. Do you really think an SSRI would help???
The way my head feels is truly indescribable!!! It is SOOO frustrating. I actually have a hard time not crying when I try to explain it because it is frustrating and awful. I feel so alone because I have never met anyone else that has this problem.
The best way I can explain it is that I have different sensations in it that feel really ominous and could morph into something serious and possibly deadly. It gets scariest when I lay down to sleep.
These are actual physical sensations, not mental although stress and noise can cause other "sick" sorts of head flareups... and I do sometimes for brief seconds feel like I am going crazy....
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
BTW Keebler, my Dr is ILADS trained. I don't think any lyme Dr. out there is going to know exactly what to do with me.
As far as my word choice, I used my own words to cut to the point of what he meant. He didn't say it quite that way.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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desertwind
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posted
I had a surprisingly good experience at Hopkins (but that was 7 years ago).
I consulted with a Neurosurgeon for potential brain surgery for a separate condition which shares many Lyme symptoms. He actually recommended that I treat for chronic lyme first before having the surgery.
I treated but still ended up needing two brain /skull surgeries. I appreciated that he considered lyme as a differential diagnosis. Not sure of the current climate at Hopkins but might be worth a shot. DW
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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