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» LymeNet Flash » Questions and Discussion » Medical Questions » I think I'm going this alone, I need some help from everyone here.

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Author Topic: I think I'm going this alone, I need some help from everyone here.
nessa143143
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Member # 20340

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I can't afford an llmd, can't afford the travel, can't afford much. However, I have 2 options.

First let me state that I have Lyme and Bartonella, Lyme CDC positive and IGenex positive. My LLMD that I *had* didn't treat my Bart first which I thought was what you were supposed to do. After 28 days of Rocephin, he said that my Lyme was cured and my symptoms must be coming from the Bart because the Lyme is cured (didn't test anything - just said it was cured).

I dropped him just as he rxd Rifampin and Levaquin for Bart which I didn't take because of side effects. I'm willing to try them again but he didn't inform me as to how to take them. Together, pulsing, etc.? I will not take these because I want my blood checked every once in a while to see how my body is handling it.

ANYWAY, first choice is to find a pharmacy that offers abx, I've seen a few but I'm wondering if they are reliable. Does anyone know what I should start with? Should I go ahead and push through the Levaquin if I can and the Rifampin? If so, can someone tell me how to take them?

Second choice is Salt/C but I really need to know exactly how to do this without harming myself.

What about being on some form of abx AND salt C?

The llmd that I was referring to is Dr. C in Tampa. I will not go back for many reasons, enough said.

I don't know if this is relevant, but I was diagnosed with an auto immune disease of my thyroid...I think it's Hashimoto's?

Also, I need an overseas RELIABLE website that I can order these abx from as well as rx pain medication, especially my Xanax or Klonopin that isn't SOOOO expensive. The prices are ridiculous. My insurance is out due to the divorce and don't have any right now.

(I already know what naysayers are going to say about Klonopin and pain medicine, but I have to be out of as much pain possible as I have to chase a 3 year old around all day, and yes, I understand the risks...the benefits outweigh them)

I'll ask some more questions in other threads, be ready to be bored!

Thanks for everything in advance. I feel like I'm out in the big wide ocean without anyone to save me.

Posts: 63 | From Hell - Or at least it feels like it, Oh, I mean Tampa, FL. OOOps! :D | Registered: May 2009  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

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I'm sorry that you don't have a lyme doctor right now. I would urge you to do whatever you can to get one. None of us are qualified to offer you the kind of advice that you need in order to take prescription antibiotics.

If you are planning on taking abx, you need to be under the care of a medical doctor who knows your condition and is trained appropriately. Someone who can keep an eye on your liver enzymes and possible complications of abx usage such a C. Diff. and side effects of medications.

Have you considered some of the herbal protocols?

Some of the more well known:
Dr. Zhang - he has a book
Buhner - he also has a book
Dr. Cowden
Look into Dr. K's work - he has a lot of stuff on-line that is useful for lyme disease treatment.

Then there is rife and homeopathics and bionic 880. I'm sure there are other options that I've forgotten about.

http://www.lymeinfo.net/alt.html

Wishing you the best.

Terry
I'm not a doctor

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
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Wow, Ness you have proof of lyme. All you need is a good LLMD.

I agree with Terry. It is very dangerous to self medicate, especially the very minimum of monitoring your liver enzymes on a monthly basis. I would NOT recommend trying it on your own.

Even if you did get the dosages for the rx that you have, it will run out and you will be still stuck in the same boat. Lyme and co's can take years to treat.

Have you tried 'seeking a doctor'??

Can you do some research in your area for an internist, rhuemy, or infectious disease doctor that may specialize in Lyme or at least follows ILADS protocols.

If you take Dr. B's guidelines with you, maybe they would be willing to offer his treatment approach.

The natural approach may be all you can do at the moment, although IMHO the best treatment is antibiotics.

Good luck.

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

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nessa,

many people on here are treating themselves with alternatives. I was dx in 1999 by LLMD with Lyme, bart, babs and erlichiosis. Like you, I just couldn't afford the expense anymore and my only option was to self treat.


I have used mostly antiparasitics herbs and salt/c (sea salt) for the past 3.5 yrs and am almost in remission. If you decide to do the salt/c let me know and I will share with you the guidelines that I used.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
BugBarb
LymeNet Contributor
Member # 210

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I would go with antibiotics as my first line of defense. Personally, I feel the bacteria need abx to be killed properly.

Is there a free clinic or low cost clinic where you could go for basic medical treatment and monitoring of your basic body systems through periodic blood tests?

--------------------
Lyme is like the flu. You can get it and recover, but you can always get it again.

Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Janice70
LymeNet Contributor
Member # 16319

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When I was first diagnosed I didn't know about the non-antibiotic treatments such as Rife and

Salt/C. If I had known, I would have tried those first before the antibiotics, even though

I had money and and access to LLMDS.

Posts: 311 | From CA | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
   

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