Need advice for Neuro Lyme treatment

Hello all,

This is my first post, so I will include a little bit of my background.

While I have not yet seen an LLMD, I am quite certain I have neurological lyme. My most major symptom began Feb 2012. I had a 'conscious' seizure that lasted 5 hours. The last year has proven this major symptom to be seasonal (fall and spring). A seizure may be accompanied by the following: weakness; focal stares; racing heart; tingling throughout face, body and extremities that continually morphs/moves; facial numbness; difficulty speaking; involuntary muscle movements, etc.

I do not have daily full-blown seizures. (During the height of lyme season, I may have a seizure every 2 days or so.) However, since that first seizure, I do have a combination of these symptoms daily (along with others).

I had multiple tests and saw several different specialists, including a psychiatrist. All tests came up negative.

I discovered lyme through my own research just before Christmas. Got a Canadian blood test which came back negative. Got the Igenex tests in Feb 2013 and the lyme IgM Western Blot showed positive.

I saw an infectious disease specialist in Canada. She told me that no one will diagnose or treat without a Canadian blood test showing positive. My web research confirmed this and so I am now looking to the United States.

I contacted an LLMD working out of Plattsburgh. Her information package includes the following:

"With neurological issues intravenous therapy is recommended. If you live out of this area you will need your doctor at home to be involved in your care and get the PICC line placed in your home area. If you have decided you want IV therapy this is something that you need to address with your local doctor before you see me. It cannot be done without your primary care doctor’s support. If you want IV medication it is best if you speak with your doctor first before your office visit to find out if you will have support."

While I have not consulted with my family doctor yet, I am very certain that she would not support me in this way. So... my question is: Has anyone been able to overcome neurological lyme, specifically involving seizures, WITHOUT going on IV antibiotics? It costs $750 just to walk into this LLMD's office. If I need IV antibiotics, then I would rather know now and arrange to go somewhere else. Where that somewhere else is, I don't know. But, I would begin the search.

As a last note (just for information), I have been receiving treatment from a naturopath over the last year. While she did not know that she was treating lyme disease, she would test me every visit and was continually seeing that my system needed antimircobials (a naturopathic equivalent to antibiotics) I am hopeful that her continuing treatment means that I will need a lesser term of antibiotics. I believe that I am meant to heal from this disease and I am staying positive!!

Thank you all in advance for your help.

(I went to school for a bit in Plattsburgh

many moons ago when I was healthy and normal , never thought in a million yrs

that I would be like this, unable to speak half the time, trouble reading

that wind blew fierce too, but I was tough and perserved, going in one dorm to another to cut down on the walking in winter )

best wishes for u, u sound like u have some helpful drs.

Just wanted to add that Neuro-Antitox formulas by Jernigan Neutraceuticals are excellent for neuro symptoms and very safe.
(and no, I in no way benefit from saying this :)

Hi,

I have neuro lyme and am doing much better with oral antibiotics. I hope that I do not have to do IV antibiotics as it is very expensive. Because I had such a positive impact with low dose of oral my doctor does not think at this point that I will need IV. Perhaps you can look into another LLMD.

Thanks for all the info in this thread. My son has unproven Lyme and is showing 'emotional lability' and  'cognitive decline' (especially in short term memory) but the doctors he's seen are in flat denial.

Although he had the rash, they'd prefer it to be called PANDAS or bi-polar or anything else.

PANDAS is still debated as possibly not existing, but Lyme is the most common  infectious disease in the US. And, the CDC says it is drastically underreported!  Is there any logic still out there?

I don't claim more than a hint of knowledge about PANDAS, but I remember when Chronic Fatigue Syndrome was all in someone's head. Same for Fibromyalgia.

One LLMD in So. Cal charges 550.00 for the initial visit, paid before ever seeing the doctor. That's half my monthly income. I have checked resources people have suggested for financial help. I'll post them here for you in the next day or two.

I'll be following these posts for more suggestions.

(www.lymediseaseassociation.org/index.php?option=com_content&view=category&id=105&Itemid=340)

or Lyme TAP(www.lymetap.com/)

These were recommended to me , by Traveler I think, as places to check out for financial help.

Hey thrive,

I was diagnosed with epilepsy and suffered full blown clonic tonic seizures. The kind that I a lst all consciousness, lost control of every function of my body and did not know what happened afterwards. My tongue was bit up and bleeding,my head had a bump on it from banging it on something from the fall. Well, the funny thing was, was that it wasn't "epilepsy" as the doctors saw it. I was having seizures due to lyme. Quite possiby also from the MTHFR gene mutation, which can cause them as well if the body doesn't have an adequate useable supply of b vitamins.

I never did the IV. My doctor felt it would have been too much of a die off too quickly and I would become toxic. Which did happen a few times even without the IV. about 2 years into lyme treatment (herbal and abx), I had to take some chelators to remove some heavy metals in my body. It was then that 3 weeks passed and I had forgotten to take my seizure meds! Prior to this, if I didn't take them for 2 days, I was seizing. Now it was 3 wks and nothing! I have been off my seizure meds for nearly 1.5 years now, with no seizures. Yeah!! I get really nervous saying that, cuz it's not something I ever want to go through again. I think the key is removing the bacteria and helping the body detox. These days its the toxins that seem to hurt me more than the lyme I believe.

Good luck!
Let me know if you have any questions...

Samantha

There are many alternative protocols:

Cowden
Byron White
Zhang
Jernigan
Buhner
etc.

The reason there are so many is because there is no one-size-fits-all treatment for Lyme/coinfections. What works for one, won't for another. We are all different, with different genetics, different infections (different strains), different environments. So our treatments thus must also differ - must be customized to our own situation.

And yes, IM injections of abx can substitute for the more expensive IV abx.

And yes, methylation issues (MTHFR, etc. - google "Yasko methylation" for more info, or search for my methylation posts on here...) can also lead to numerous problems healthwise and can interfere with treatment for Lyme/coinfections.

Very important to deal with methylation!

I met a "Lymie" this weekend who reported rates of up to $2000 a dr visit in her long battle. She's gone all over the country.

She is with a Dr. now who charges only $200 and I know saving $1800 a visit is important to me. I figure buying food is important for my health too.

She tried many different herbal protocols and antibiotics and says for her antibiotics work.

On the really up side, she has made a drastic improvement in the last 16 months and is no longer bed ridden. Her vision has improved markedly too.

I'll see if she'll share her story here.

Also, I posted a new thread about Manganese and epilepsy last week and I'm curious to get anyone with seizures feedback. Of course, all thoughts on the subject interest me.

Post Edited (California Cat) : 4/26/2013 8:31:19 PM (GMT-6)