This is topic To self treat or not to self treat? in forum Medical Questions at LymeNet Flash.


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Posted by KatePaint (Member # 22524) on :
 
Tried seeing several doctors
Tried a Lyme Doctor (spent THOUSANDS)and Im a younger individual.

By seeing the lyme doctor I know supplements that help. I will continue those.

I have a way to get antibiotics for extended periods of time. Currently I have been on doxy for 4 months.

My health insurance knows I have lyme. They refuse to cover any lyme related testing or what they think is lyme related. Thanks to the lyme doctor for giving that info for them, they will no longer cover those appointments.

Basically, it would be more cost effective and really much more efficient.

Thoughts?
Plans?
 
Posted by Keebler (Member # 12673) on :
 
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Q: To self treat or not to self treat?

A: NOT.

Still, self-education is a major part of getting better and one cannot escape that. But, experience is so valuable.

With no LLMD in my state, no way to travel, etc., after a few initial LL doctor appointments, I've been trying to treat myself for years - on a shoestring - and I have to say that if you can at all afford a LL doctor to guide you, it is best.

It is nearly impossible to be one's own doctor for a set of infections that is so very unique.

Just any antibiotics won't do. Just any supplements won't do. Not at all. Did your previous lyme doctor TEACH you how to treat yourself? If not, can you at least schedule some appointments just for that approach?

Do you have a good ILADS-educated LL ND (naturopathic doctor) around who can guide you &/or TEACH you a few basics?

Since you are not new to lyme, I assume you've read several books and are familiar with all the different protocols by the ILADS authors. Is that a correct assumption - or do you need links to a collection of those to study?

As Randi says below and I forgot to clarify, there are books that can guide you. But I would have thought you'd seen them all if you've been at this a few years. If not, I'll come back with some great links for you.

Are you diagnosed with just lyme or did your lyme doctor also diagnose any other tick-borne infections? You were assessed for them all, correct?
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Posted by randibear (Member # 11290) on :
 
there are some protocols that you can do at home. like buhner, cowden, etc.

they are relatively cheap compared to some but at least it would be doing something.
 
Posted by KatePaint (Member # 22524) on :
 
I have been diagnosed since May 2008.
Just Lyme.
Checked for other infections (negative).

I still am searching for a good LLND (currently in MN)

Basically, I feel hopeless. If you have any links or collections, I would love to view them.
 
Posted by Keebler (Member # 12673) on :
 
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What labs did they do for the coinfections?

Oh, please don't feel hopeless. You are fairly new to this, was 2008 also the year when you first go sick or the year of your diagnosis?

I had been very ill for about 20 years before finding 3 tick-borne infections and a few other chronic stealth infection and a liver disorder on top of that. So, as you're getting treated sooner, a better chance of recovery.

I will be back with some good links that open a world of opportunity. It's just so much more work having to sort through it on one's own. There is always hope.
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Posted by Keebler (Member # 12673) on :
 
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To compare and contrast some works of LL authors regarding complementary methods (some include Rx, too.).

I've not included anything from the Cowden Protocol but you can Google that and search for past threads here, too. While familiar with many of the herbs themselves, I'm just not familiar with Cowden's protocol.

I've seen good help when I could afford the Zhang protocol for a couple of months a couple different times.

Buhner's has good merit, too, and is less expensive. Individuals vary so one does not fit all. Please save this to your computer for reference.

Books that explain lyme or the controversy are not included here but you should read "Cure Unknown" as it contains great teaching experiences - and the DVD "Under Our Skin" gives great hope, too.

Good luck.

-------------------------------

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
MAJOR REFERENCE LIST FOR SUPPLEMENTS:

This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

===========================

http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf

LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-autism Connection Conference

Steven Harris, MD

125 pages - Powerpoint presentation

------------

Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

==================

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf

A Treatment Guide: Lyme and other Chronic Infections

by Dietrich Klinghardt, MD, PhD

October 2009 - 87 pages

====================

Great information about treatments options and support measures:

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

========================

http://tinyurl.com/5vnsjg

Book: Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

website: http://planetthrive.com/2009/08/buhner-healing-lyme-program/

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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86857

Topic: Buhner Healing Lyme Q & A links have changed

================

http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com

================

www.lyme-disease-research-database.com/lymenutritionfile1_files/Integrated-Approach-DAN.pdf

HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection

Daniel A. Kinderlehrer, M.D. (2004)

============================

This author is also an ILADS member & a LL ND author:

http://www.dancingviolets.com/media/pdf/LymeDisease.pdf

Chronic Lyme Disease and Co-infections: Clinical Overview (Snow)

======================

Similar approach, from another ILADS-member/ND author:

http://www.steveclarknd.com/LymeDisease.htm

Your Path to Wellness (Clark)

=====================

From Bea:

This is a very good overview of lyme and coinfections and includes some case examples and herbal formulas of a treating herbalist.

http://tinyurl.com/yh6w892

Note -- The document is 81 pages long so it may take a couple of minutes to load.

=========================

RIFE

http://www.lymebook.com/lyme-disease-rife-machines-bryan-rosner

Book: Lyme Disease and Rife Machines by Bryan Rosner

=======================

Not at all about lyme, but a good site for articles about supplements:

www.vrp.com

In their search bar, just pull down from products to articles for access to a fabulous library backed with solid research citations for every article.

=================

More specific to herbs but, again, not about lyme:

The One Earth Herbal Sourcebook (Tillotson, et.al.)

http://oneearthherbs.squarespace.com/one-earth-herbal-sourcebook/

====================

You can also see medical abstracts for many supplements at PubMed:

http://www.ncbi.nlm.nih.gov/sites/entrez

=====================

www.itmonline.org

ITM - Chinese Medicine research site
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Posted by KatePaint (Member # 22524) on :
 
2008 is when I found the bulls eye and was confirmed for Lyme.

I had my coinfections through labcorp/viromed
Tested for babesia, candida, Ehrlichia chaffeensis
 
Posted by Keebler (Member # 12673) on :
 
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Good to know, then, that 2008 was the start date (unless you had a prior experience). I don't know about Labcorp for testing. Others here might, though. Still, coinfection tests are not always reliable, either. It's sort of hit or miss.

I sent a PM to you with the name of a holistic lyme doctor in Hennepin county. I had saved a note from a while back in case my sister who lives there ever needs it. Perhaps that name will help. But you live in Ohio and Minnesota?

Also post in "seeking doctor" and find your support group. Then be sure to also spend time away from all this as it can be overwhelming. Sing, paint, whatever - just also carve out something aside from this graduate-level coursework.

==========

As an apology for loading you up with all that heavy homework, here's some fun:

http://www.youtube.com/watch?v=OfMmnHpvL70

Mr. Bean Goes to the Swimming Pool - 5:05
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Posted by lou (Member # 81) on :
 
Sometimes self treating is unavoidable, at least for a period of time. And some people have had good results doing this.

However, I have known someone who self treated for a very long time and died of a condition that might have been caught had he had a good lyme doctor. Or at least checked in with one once a year.
 
Posted by Marcie (Member # 10070) on :
 
You need to get labs done if you are on abx for a long period of time. I understand you have to do what is necessary for you, just becareful.
 
Posted by migs (Member # 16496) on :
 
Why an LLND? Why not an LLMD?

If you can afford a good LLMD, then do it. If not, then do what you have to and lots of us do. Save your money for meds you can order online or go to Mexico or whatever.

Just do your research and talk to people about what protocols worked and even "CURED" some people. Also, read treatment guideline and blogs by LLMDs that are respected.

Make sure to tell your GP though, so he can monitor your liver or whatever.
 
Posted by djf2005 (Member # 11449) on :
 
Self treating or guiding is not a bad idea once you know what you're doing....

This takes years.
 
Posted by Keebler (Member # 12673) on :
 
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The question was asked: Why an LLND? Why not an LLMD?

In some states, NDs (naturopathic physicians) are licensed to prescribe a wide range of pharmaceutical medicine, including most antibiotics. They also have four years of studying the human body in regard to nutritional and herbal medicines.

Some LLNDs are truly ILADS-educated, some completing preceptorships / interships with ILADS LLMDs. Those LLND are usually also ILADS members, keeping up on the research, attending ILADS seminars, etc.
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