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» LymeNet Flash » Questions and Discussion » Medical Questions » Not getting well, what else to look at?

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Author Topic: Not getting well, what else to look at?
imaqt
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I seem to be missing part of my issues. The Lyme Doctor has done a good job, but staying close to Lyme treatment and not looking at other issues.

Sometimes I think my Lyme is better, but other things will not calm down.

I think I may have methylation issues, absorption issues, and possibly issues with the nervous system.

Is there a list of things a person should test for?
If so, where does a person go to have them tested?

Posts: 14 | From Kansas | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Razzle
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Suggest consulting a Naturopathic or Integrative Physician for help.

Methylation testing:

Can get tested through a regular lab (i.e., LabCorp, Quest, etc.) for MTHFR.

But I don't think the regular labs do the other methylation gene tests. You can get those done through Dr. Yasko's site:
http://www.holisticheal.com/health-tests/nutrigenomic-testing

Also, consider Parasites. Tests for parasites are woefully inadequate. It's more accurate to get muscle tested or ART tested for stuff like that.

The standard malabsorption test is a fecal fat assay. But this misses other kinds of malabsorption. Most Naturopathic or Integrative Physicians are well-versed in this sort of issue.

The only doctor I ever found who had a clue about my neuro issues is retired and no longer practicing medicine...

Perhaps a Cranial-Sacral practitioner, Osteopath, or Neuro-Chiropractor could assist you with the neuro stuff?

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

Posts: 4162 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
faithful777
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Do you have coinfections?? You must have some. Are they being treated?

--------------------
Faithful

Just sharing my experience, I am not a doctor.

Posts: 2679 | From Colorado | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions (porphyria, parasites, gluten) that can hold us back - are discussed here.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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When considering herbal / nutritional / adjunct methods:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

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

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL & SAFETY links,

BODY WORK links with safety tailored to lyme patients (NEVER allow head or spine to be suddenly twisted - - UPLEDGER, FELDENKRAIS are safe.

LOW HEAT INFRARED SAUNA detail,

BIOPHOTON - BIONIC 880 (& PE-1) links, and

RIFE links.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What ILADS is

& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both)
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
imaqt
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Faithful, I know I have Babesia and am in the process of treatment. I also have celiac and have eaten gluten free since 2000.

I did test for parasites, but have been treated. Once I was treated the buzzing and movement in my abdomen stopped.

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glm1111
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Treating parasites has to be ongoing especially since some of them can lay 200,000 eggs a day. If just one egg is left, the cycle will start all over again.

I found that antiparasitic herbs and salt/c hit all of the co-infections as well. Maintenance, as Hulda Clark suggests should be FOREVER. Google parasite symptoms.

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
Maya12
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I agree with Gael, treating for parasites is a big one and also have you ever checked to see if you have any heavy metals?

The heavy metals and biofilms can be another big issue and they are tied in to parasites as well.

Perhaps 2 good avenues to check into and as Gael said even if you did treat them it is ongoing as is metal removal.

And please consider what razzle had to say as well and also consider kpu

Good luck

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Tammy N.
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Check into parasites....without a doubt.
Posts: 2238 | From East Coast | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
faithful777
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Parasites don't go away after one treatment and Babesia is very difficult to get rid of. You could also have other infections like others have said here.

The doctor's can't prove everything with a test, so many treat as if you have the major coinfections to cover all bases.

Being gluten free is good, but I don't know how the rest of your diet is.

If your LLMD doesn't know what to do next, then it is time for a new LLMD.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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Judie
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The Stanford Requisition sheet shows what else can be tested.

http://www.pdffiller.com/5598888-CFS-lab-outside-CFS-Lab-form---outside-1-Other-forms

I tested positive for 11 co-infections. I requested that my LLMD run all the tests listed. I showed him the list and asked if I tested positive for anything, if it will effect my treatment plan. He said yes.

Also, test fibrin monomer.
http://drcharlescrist.net/Borreliosis/Hypercoagulation/

Lastly, test for H pylori in MULTIPLE ways. I can't stress this enough.

My PCP ran a stool test the same week my LLMD ran a blood test. The stool test was normal, while the blood test had extremely high titers. This made a huge difference and my doc treated this FIRST before anything else.

The Breath Test is suppose to be the most accurate.

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ms dixie
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The number one things I would start with:

Parasite protocol
Using enzymes for biofilm
consider strongly a NANO silver like colloidal silver "Sovereign"

Burgdorfer( discovered borrelia and advocated it OVER ABX!) for Lyme . There are some who have even gotten well with IV silver ( nano)

My biggest shock has come from how INTENSE (grueling) my reaction was with each of these .
Parasites are a REAL (!) part of this disease. I am even wondering if we REALLY have a parasite INSTEAD of Lyme because ABX do so little to help most of us. My reaction to iver and albenza was every bit as difficult as the day I took my
first doxycyline , which was excruciating. these parasite meds gave me a herx that took my breath away after years of ABX. THEY ARE KILLING SOME UNWANTED ORGANISM without a doubt ! Ask Others who are trying the Klinghardt protocol.

Unfortunately, I do not think that there is a cure all to completely eradicate them. But there are a number of alternatives to rotate to attack them and have an improved ability to function and feel better.
Also to consider : liposomal artimisinin from Hopkinton Pharmacy , sida acuta, and cryptolepsis.

I would start with ivermectin and silver , but go very slow. The parasite issue has me convinced after trying these meds . I have tried ivermectin, got rid of my CHRONIC asthma (!) and now am on albenzadole and SILVER> I am herxing a lot , but am hopeful it will get easier . I KNOW both are working!

Posts: 153 | From Huntsville Al | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
imaqt
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Interesting, I have been on artimisinin and cryptolepis. Actually, I am currently on Crypto. I do much better on herbs.

The meds make me more than herx. The last drug was Mepron and I was really sick for a week. Not just herx but other stuff too.

Posts: 14 | From Kansas | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
   

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