Jordana
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posted
I've been thinking about going to get a whole workup for my spine again.
I'm also going to see an audiologist and ENT for vestibular migraines.
I'm doing this because I really can't function with my symptoms as they are. I'm hoping there's some symptomatic relief in visiting these other medical types -- especially my spine since I want to be VERY sure of what's going on with it before I decide to march off to the chiropractor.
But I also have such a hard time believing LYME CAN DO ALL THIS. I keep walking around thinking I must have massive spine and brain damage, and I have a really hard time believing antibiotics are going to do anything at all to make them better.
So I keep thinking it's Lyme, ok, but it must be MORE THAN Lyme, because who has all this going on, every day?
I'm trying to decide if I should just keep treating Lyme and forget all that or if I should go ahead. If I have some kind of hidden spine or ear damage that's not going to go away with antibiotics or anything else but specific therapy.
Right?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I would not assume it is all lyme. There can be much more than lyme causing issues and I do think for the sickest of us this is true...
The best Drs. treat with other things besides just antibiotics... such as hormone therapies, nerve relaxants etc.
I would examine every avenue if you can afford it!
Best wishes!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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bluelyme
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posted
If my adrenals are going to heal i gotta clear the lyme ,if my hormones are going to heal gotta clear the lyme ,if my nerves are gunna heal gotta clear the lyme ,if my kidneys ,liver ,eyes fill in the system body part or function and its been ****ed up by lyme ..
jordana ..erlichia infects wbc and makes them inept letting ebv ,cmv ,cpn ,myco and borrelia run amok ...i bet dime to dollar the msids is having a hey day
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Keep in mind that doctors don't particularly like the work chiroparactors do. A good chiropractor will be very knowledgeable about the spine and can take x rays.
My chiropractor is also a functional medicine doctor and runs tests to see how we can optimize my overall health naturally.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jordana
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posted
I guess...the thing is if you put my symptoms on paper there would be no way not to start thinking, this person has Multiple Sclerosis. Even I think it sometimes.
Other diagnoses are some kind of spinal issue and a vestibular disorder. The point is - you can have more than one thing, especially since clinically verified MS is caused by Lyme( I think EBV actually); it attacks the spine and loves the ears and eyes.
Can't kill Lyme going after these things but there's some possibility of functional relief. I hope.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I said the exact same thing. Saw some of the best specialists in the world supposedly. Even went to the hold the Mayo clinic.
On one hand, it was an enormous waste of time and money. On the other hand, now I know that there's nothing else to be found, other than Lyme and my heart problems.
So all in all, I'm glad I got the $100,000 workup, but it told me absolutely nothing. Thank goodness for insurance.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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posted
Yeah that's kind of along the lines I'm thinking. I'm sure not getting enough of a bang out of abx to think this is all Lyme. Could be, but if all that expertise and technology can't find *anything* else, then that's what we've got.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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posted
Hey by the way Sam -- my heart stuff -- the big pulses in my chest that pushed my head around, tachy runs and the jumpy veins all calmed down once I started taking amlodipine, propanolol, and double bactrim.
My heart is screwed too Sam. Six ways to Sunday. I didn't even figure out how bad it was until I went all the way back through my records and when I did I was shocked, especially that not a single doctor told me any of it.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Hey that's really great to hear! I bet bartonella or one of those other endothelial infections causes the head circles. Maybe doubling the bactrim is knocking it down.
The heart...yeah. Great how docs just ignore your tests sometime isn't it? Mine is horrific scraping pain with every beat, 24/7. I have to lay in funny ways just to get the pressure from the inflammation off my heart so that I can breathe. It's unbelievable. It hurts so bad.
My heart tests look ok (except for diastolic dysfunction, and a branch bock on one EKG), but a doc told me not too long ago that pericarditis doesn't show up on tests usually unless you have an effusion.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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posted
Yep, I've still got plenty of symptoms left and no shortage of rotten, scary frustrating days, but I knew it was doing something within hours of taking it.
Kills Lyme cysts too apparently.
I'm so sorry Sam about your pain. I always figured that if medicine didn't have a cure it at least had to have managed some kind of symptomatic relief, some drug to help, you know, mostly everything.
Amazing and depressing there's not a single thing anyone can do for us. Does aspirin help at all?
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
When morphine didn't help, I kinda gave up... They tried to give me dilaudid, I said no thanks.
But actually, ibuprofen helps a little. Not really with the pain so much, but it actually gets a little bit of the inflammation off my heart so that I can breathe better.
Bactrim used to be my favorite. It gave me 30-40% of my life back at one time. So glad to hear that it's doing something good for you too! (: It actually only helped 3 of my 40 symptoms, but that was a big deal at the time. I never got higher than three a day. I wonder what would've happened if I would've took 4...
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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posted
I'm taking 4. I was scared to do it but it's the first med I've taken that clearly erased a symptom.
Keebler would kill me for suggesting this but aspirin can be a miracle worker sometimes. People with seriously intractable cancer pain have used it to good effect. To protect your stomach you can buy the powdered stuff they give to horses -- it's a blood thinner too.
I would have taken the dilaudid. But if they were ramping you up to the legal heroin a gram or two of aspirin might be a worthwhile experiment.
posted
I almost tried aspirin, but with my low platelets I decided against it. Ibuprofen thins blood too, but its thinning properties wear off a lot quicker.
Hey, another thought about specialists... My PCP made me realize that the treatment for whatever I may (or may not) have is basically either antibiotics or steroids. I can't do steroids, so antibiotics it is. When he made me realize that was when I stopped caring about specialists so much.
Sure there's IVIG and such, but specialists aren't gonna be quick to hop onto one of those. They'd just be prescribing steroids, methotrexate, plaquenil, maybe minocycline, etc etc. So after that is when I decided to just stick to LLMDs who know about IVIG, MCAD, etc etc.
I did see a Lyme-aware POTS specialist (an electrophysiologist) though. That guy was really good at what he did. I saw a Lyme-aware neurologist too (but she wasn't as good). People like that might be able to provide some symptomatic relief. Wish I could find a Lyme-aware cardiologist too.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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posted
If you found one they'd be up in the Northeast; Connecticut or NY. They're out there, but they're not in Texas .
If you're worried about your blood getting too thin, Vitamin K is the antidote.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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posted
Colchicine? Its what a cardio recommended before i started
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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