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» LymeNet Flash » Questions and Discussion » Medical Questions » Neurological lyme

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Author Topic: Neurological lyme
Neko
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Hello,

About 2 years ago I had IV antibiotics for Lyme and was treated for Babesia. I got moderately better, then didn’t progress. We found mold in my house, which was remediated. My Lyme doc wanted me to move, I stayed with a friend for 3 months but that dried up.

Moved back home, symptoms have been progressing. Afraid to go back to LLMD because I was unable to move out of my remediated house. Absolutely have no where to go. When the weather gets warmer I’d consider living in a tent again!

My symptoms are getting worse: burning nerve pain, numbness. All over body weakness (different from fatigue). Excruciating neck pain. Hip pain. Pressure in head.

Been to ER, no help. Sometimes I’m short of breathe like I’m forgetting to breathe.

Some days I think I’m dying of some sort of neurodegenerative disease. I don’t know what to do next.

I’m not sure my Lyme doc will help me unless I’m living in a pristine, mold free environment. I work barely part time so I can’t afford a $1200-$2,000 a month rent.

All my family friends live in old moldy houses.
I’m fairly disabled so I have to be near or with my parents.. they think my mold talk is crazy, though I did have high levels of mycotoxins in me last fall. Gonna repeat the test next month.

I don't know what to do. Find someone to give me an MRI?
Spinal tap to test for Lyme? Buy a tent and practice mold avoidance in Arizona just in case?

I’m at the point where I’m in excruciating pain and I’m scared.

I wonder if I’m developing ms or ALS or permanent nerve damage but no one is taking me seriously. My PCP ( who does not believe in chronic Lyme) wanted to refer me to a rheumatologist, but I don’t believe in those doctors. It’s not muscle pain, that I can ignore. The nerve pain is what’s killing me.

Posts: 133 | From North Shore | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
Robin123
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Could you find another Lyme doc to work with?
Posts: 13069 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Sounds like a nightmare Neko

If you have insurance, I would go to a mainstream doctor. Maybe would prescripe pain relief for you.

Other OTC pain relievers;

OTC lidocaine patches
Epsom salt bath
Aspirin
Coumarin
Alka selzer
Midol

I had left over gabapentin from Neuro Doctor. I found it very helpful for my IC bladder pain. You gotta control the pain.

I would also look into a new LLMD, someone maybe more understanding to your circumstances. Your symptoms are of a deteriating condition that requires medical intervention of some sort. To do nothing is not an option. Form a plan of action.

Where is the north shore ? Hawaii ?

Posts: 2412 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Phoiph
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Niko~

When I had neurological Lyme, the nerve pain was constant, full body burning, stinging, etc., 24/7 for 8 years. My condition was considered hopeless, even by LLMD's.

I tried everything that was suggested, and nothing touched it. I couldn't stop pacing, day and night, as the pain would only intensify if I became still.

The ONLY thing that worked for me was mild hyperbaric with a home chamber done consistently over time. I am 100% well and pain free now.

You don't have to live like this. Please read the mild hyperbaric thread; there is help and support for you there.

Posts: 1732 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Neko
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Is mild hyperbaric expensive?

I’ve spent about 50k already treating Lyme and confections. I am out of money.

I’m on neurontin/gabapebtin for now.

I’ve pretty much done everything I could to treat Lyme. A lot of Lyme doctors now believe you have to treat mold exposure first to cure the Lyme. Unfortunately the home I live in after expensive remediation, still has a mold problem.

I cant move out, unless I live in s tent. I was in a tent for a month last summer. Very hard to take supplements and stick to a protocol while in a tent.

At this point I’m not entirely sure had Lyme disease, let alone have a relapse right now. At least I know I had Babesia. I did have Lyme once, courtesy of a bulls eye rash.

I’ve also had chronic fatigue since being a teenager, and often wondered if CFS/ME is viral, and if it affects motor neurons hence the fatigue and similarities with post polio syndrome.

Either way, I’m getting worse not better. Went to a new doc, his thing was allergy testing and I’ve been informed I’m allergic to multiple grains (corn, rye, quinoa), carrots, yeast, etc.

I’m tired of spending money at the doctors.

Posts: 133 | From North Shore | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
Neko
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quote:
Originally posted by Robin123:
Could you find another Lyme doc to work with?

Not unless they take insurance. I don’t know any good Lyme/mold docs in New England anyway.

I don’t trust many of them, I don’t have money to spend on thousands of dollars of supplements.

I’m thinking of trying the burner protocol and CBD oil next.
Gonna do a 3 day fast/cleanse first with anti-fungal life/anti parasitic herbs. Been drinking bone broth too.

Posts: 133 | From North Shore | Registered: Sep 2015  |  IP: Logged | Report this post to a Moderator
dbpei
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There is a very good LLNP in NH who is also Shoemaker certified, that understands both lyme and mold. I think she would be more understanding of your circumstances and at least guide you through this tough battle with steps you can take in the right direction. I will PM you with her information.
Posts: 2367 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
klutzo
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Hi Neko,

My body was burning so badly from nerve pain, I was going to kill myself. Neurontin made it worse, and Lyrica did nothing but make my feet swell so much I could not get shoes on.

I got rid of about 95% of the burning by taking R-Lipoic Acid twice daily and Benfotiamine once daily. It will take awhile to work, but you should know within a month easily.Doses can be experimented with.

Benfotiamine is dirt cheap. R-Lipoic acid costs more but is much stronger than Alpha-Lipoic acid, so you get more bang for your buck. I get mine online at vitacost and use coupons from retailmenot to bring the cost down. It will not cost much to try it out.

Posts: 1267 | From Clearwater, Florida, USA | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
mlg
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Rotate anti-parasitical. Look at the post I just posted for Brucesismom. Get a better LLMD and Buhner is good. Sounds like babesia like organism.
Posts: 640 | From CA | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
   

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