Got a positive WB (IGG & IGM) & & just started Samento protocol.

My doc & I discussed Marshall protocol - but the thought of wearing long sleeves & turning my well-lit home into a cave didn't appeal to me - especially thinking I'd have to do it for about 3 years!

I would like to know what protocals other chronic and/or late disseminated lymies have tried & success rates.

Really need advice! Wondering if I shouldn't be on abx???

Thanks & hope this new year is better than last year!

usually start with doxycycline 400mg a day for a month or amoxicillan 4-6 gms per day for a month.

the advantage of using doxy first is if you have erichliosis, which is a lyme co-infection, it should eradicate that.

samento has never definitley proven in any way, shape or form to eradicate lyme or co-infections. it may be a helpful supplement but that's it.

first thing you need to read, and then discuss with your doc:
http://www.ilads.org/burrascano_1102.html

additionally make sure you take a good daily multi-vitamin, a magnesium supplement and do some form of exercise to the best of your ability.

since you have a long standing infection you may want to discuss the use of the drug plaquenil (with a macrolide antibiotic like biaxin or zithromax) or minocycline (which is used in the marshall protocol) with your dr.

both plaquenil and minocycline are medications that have immunomodulating properties and your immune system is very 'beat up" if you have been sick for such a protracted period.

in the same vein i would also suggest a full immunological workup by an immunologist.

best of luck and happy healing...

zip

Excellent question. There are many approaches -- the only thing I can say is, research as much as you can, and make your own decision. What you choose depends in part on how well you tolerate antibiotics, and what other health issues you have to deal with. Here are the links that will get you off to a good start.

I am doing a combination of antibiotics, treating for borrelia burgdorferi (LD) and the coinfections, herbal antibacterials, supplements and herbs to support my immune system, and cleanses for heavy metals and toxins. So

My protocol is IM bicillin, at least 1 yr, for Bb
Mepron/zithromax 7 months for babesia
Omnicef/samento 2 months at least for suspected bartonella
Sauna (just starting)
Supplements as stated above.

I seem to be doing well and improving slowly but constantly, and I'm certainly much better than when I started out. It's a long haul. I've been attempting successful treatment for 16 years, and I have been on this particular protocol since February of 2004.

You can see the variety of what people do at this link: http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Here is the list of critical links for newbies: http://flash.lymenet.org/ubb/Forum1/HTML/029260.html

Insurance info: http://flash.lymenet.org/ubb/Forum1/HTML/030280.html

Welcome to Lymenet. You have been given great advice above.

I have taken Doxy and Minocin, but I have made the most progress with treatment for Babesia. I am currently taking Plaquenil, Zithromaz and Malerone. Treatment for co-infections is very important.

I don't think I would be doing this good without abx, but I also do alot of detoxing.

It's ironic - for a disease that can really screw up your cognitive abilities - there are so many things to learn in order to make the best informed decision.

As I'm sure most of you agree from your own first-hand experience, being "sick" for a long time - misdiagnosed & even un-diagnosed - it teaches you that you MUST be responsible for your own health, which includes understanding what all the pertinent medical jargon means. It's just so much more difficult to understand when you're in a fog. I mean - I sometimes have a hard time remembering why I've walked into the bathroom (even when I need to pee) - and now I need to understand the mysterious breeding habits of bacteria that can shed it's own cell walls! Life can be so ironic.

Anyway- thanks for the advice. And if anyone knows of a "Lyme's disease for Dummies" primer text - please let me know.

Also wanted to know - any of you have to do IV abx? If so, how is that generally handled? Did you have to go stay at the hospital or drive to the doc's office everyday or what?

Thanks much.

God bless you & hoping the new year brings you improved health & happiness.

I second the suggestion that you do plenty of research. There is no one way to treat that will work for everyone. Usually people have to find the combination of therapies that works for them, often combining antibiotics and alternative treatments.

Here are some places to start your learning:

How to use the Lymenet Search
Success Stories
Dr. Joseph J. Burrascano's Treatment Guidelines
International Lyme and Associated Disease Society
Minimizing Antibiotic Risk

There is lots more, but it takes time to read and assimilate all this information.

There is no Lyme for Dummies. Lyme is so complex, we can't afford to be dummies about it. You just have to learn, slowly and over time, questioning what you find, and assessing whether it works for you.

But the good part is, when they tell you you're cured, it comes with a commplementary PhD degree in medical reseach. Welcome to the university!

------------------
Sonoma County Lyme Support
[email protected]

Welcome

Nope. No Dummies here. We've had to put our thinking caps on overdrive.

You're right, we each must be our own advocate when it comes to our health. Maybe that will change some day in regard to Lyme, but for now it seems we need to educate ourselves, eachother, and, sadly, even some doctors (at least those that will listen).

Here is a link that might help you decipher some of the jargon on this site:

LymeNet Vocabulary

Sorry you have Lyme, but glad you found us. You'll fit right in here.

I mean that in a good way

Just wanted to welcome you to Lymenet and let you know I have enjoyed reading your posts.

I am looking forward to hearing how things go for you. I think you will do just fine.

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
Newbie's Lingo

Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs

Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia
Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Check Diet Link Atkins Diet
Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

GreatSite
MedicalDictionary

USA Support

SupportGroups Canada

SupportGroups Australia

( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. )
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7

Canlyme MAG

Help with Meds

Vitamins you should Know

Tests Synonyms Guide

Lab Tests Looky

Blood Donor Info

Pregnancy
Pregnancy?
TC Link Pregnancy

Insurance SS Disability Help Minoucat Bunches of Goody's

How to apply Permethrin

Tick Testing

I can't believe what a wonderful welcome I've received from you all.

Thank you so much for all the info.

Prior to being dx'd with LD - I thought I was a pretty smart gal. I thought I had a pretty good handle on regular medical jargon, and as a licensed massage therapist - I thought I had a better than rudimentary understanding of anatomy & physiology. BUT....

Now with my LD & subsequent research, and finding LymeNet - I realize I've been delusional. I know practically NOTHING!

I've been so impressed with all the info that is available here & I've read quite a few post over the last couple of days that makes me wonder:
Are some of ya'll biochemists or something?

Well, thanks again....I need to go clean my contacts so I can read and read and read and hope that I can assimilate some of this.

DonnaReagan

One of the things I read that helped me when I first started was Dr. Scott Taylors' Lyme Disease: A Disease of Ignorance.

He seemed to sum up what I had been learning in bits and pieces.

His web site is www.myremedi.com

I must admit I was not impressed with the presentation of his report, but I was impressed with his report.