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» LymeNet Flash » Questions and Discussion » Medical Questions » Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment

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Author Topic: Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
Judie
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I figured I'd post this here since it mentions Lyme and several co-infections (in fact, Lyme is mentioned first as a condition).

There are also sources for bulk supplements and overseas pharmacies too.

Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment

https://sites.google.com/site/cfstestingandtreatmentroadmap/

I also had my doc test me for everything on this lab requisition list for Stanford, along with whatever else was being tested. I have 13 co-infections that I know of, along with Lyme (this effects my treatment plan and plays into my healing).

Since others ask what else they should be tested for, I thought this would be helpful.

I would also test for h. pylori and fibrin monomer.

***(link was changed) http://chronicfatigue.stanford.edu/docs/CFS-lab-outside.pdf

***Here's a list of what I think was on the test:

Babesia Microti Antibody, Bartonella Species, Brucella Antibody, Chlamydia Antibody
Panel, CMV Antibody, Coxiella Burnetti Antibody Panel, Coxsackie A Antibody Panel,
Coxsackie B(1-6) Antibody Panel, EBV Panel, Echovirus Antibody Panel, Ehrlichia
Chaffeensis, Ganciclovir Antiviral Serum Level, HHV-6 Antibody, HHV-7 Antibody,
HHV-8 Antibody, HSV-1/2 Antibody Panel, Mycoplasma Pneumoniae Antibody,
Parvovirus Antibody, VZV Antibody Panel, HHV-6 PCR Quant, Parvovirus PCR Quant, Borrelia hermsii, Borrelia burgdorferi

[ 03-30-2015, 03:43 AM: Message edited by: Judie ]

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karawhite
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thanks...does insurance cover these tests? any md can draw blood for this...how does this work exactly?
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Judie
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I printed out the lab requisition sheet for Stanford (it's part of their CFS department), took it to my doc and explained what it was. I first asked if I'm positive for any of this, will it effect my treatment plan. He said, "Yes." I then asked to be tested for everything I haven't been tested for.

I had the MD just do the checkboxes on the labcorp slip and took it to the lab. The MD needs to make sure to write the correct insurance codes (there are ones specific to Lyme, unspecified bacterial illness, fatigue, etc...) to get insurance to pay (the insurance needs a diagnostic reason).

Insurance paid for all except clamydia pneumonia and h. pylori (via blood test).

The lab accidentally ran the h. pylori test anyway and I happened to be crazy positive, despite a stool test done the SAME week.

I treated for h. pylori with prev pack and a bunch of stomach stuff cleared up.

Fibrin Monomer tests for hypercoagulation. This has been part of why it's been difficult for me to heal quickly. My doc and I are getting more aggressive on this.

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lymednva
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Babesia Duncani should also be on the list. It's my only positive test, and it was from LabCorp.

--------------------
Lymednva

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seibertneurolyme
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Judie,

That is a great link.

For tickborne patients both Babesia Microti and Babesia Duncani need to be tested for or treated empirically. Also Bartonella is not on the list -- Galaxy Lab is one option for testing, especially for nonstandard strains, but that testing is very expensive. Many LLMD's empirically treat for bartonella or BLO as well as babesia.

Bea Seibert

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Keebler
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Judie, thanks for this important detail.

lymednva & Bea's notes remind us that this "list" of "other" considerations is constantly evolving.

Some of those in the list above are discussed in TIMACA's thread, in this set, which also has various stealth infections to consider - scroll down a ways to find TIMACA's posting:

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 that can hold us back - are discussed here.
-

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Keebler
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Also consider the many reasons for exercise intolerance IF that is one symptom that troubles anyone reading this. It can be lyme, liver, other infection connected -- or for other reasons but just don't push it.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115275;p=0

Topic: "post-exertional exacerbation of symptoms"


http://rc.kfshrc.edu.sa/besc/sections/RCF/E_Library/NMDR/Exercise%20intolerence.pdf

Eight page pdf. Note: mtDNA = mitochondrial DNA

EXERCISE INTOLERANCE DUE TO MUTATIONS IN THE CYTOCHROME b GENE OF MITOCHONDRIAL DNA

[Twelve authors ] July 13, 2004

--------

Of course, lyme and other stealth infections can damage mitochondria & DNA and also really stress the Cytochrome liver detox pathway. But there can be reasons why some folks have an easier time with even non-aerobic exercise than others.
-

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Dogsandcats
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Judie
What test did they do to determine hyper coagulation?

I have been diagnosed with Leiden V factor with two copies.

http://www.mayoclinic.org/diseases-conditions/factor-v-leiden/basics/definition/CON-20032637

I am curious if the same, what is a treatment? I am so slow to heal.

Thanks!

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Judie
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"What test did they do to determine hyper coagulation?"

They did a simple blood test for fibrin monomer. It came out abnormal.

I just started boluoke for it.

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lymednva
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Mold can also be a cause of exercise intolerance.

--------------------
Lymednva

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Judie
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Oh, and heparin is the other treatment. I'm pretty sensitive to meds, so I believe that's why I was given boluoke. I've been on it over a week and no problems so far.

Here's an article about it. Both the genetic predisposition and infections seem to create hypercoagulation.

http://drcharlescrist.net/Borreliosis/Hypercoagulation/

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Judie
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I'm going to add genetic testing like MTHFR to the list along with a thrombosis panel (includes MTHFR) and an antiphospholipid panel.

Total IgE is helpful too.

All should be paid for by decent insurance through a standard lab.

I learned about the thrombosis panel here:

Thrombosis anyone? MTHFR results!
http://prettyill.com/videos/watch/thrombosis_anyone_mthfr_results

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Judie
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As an update, the 23andme test data was very helpful when I plugged it into health analysis websites.

Here's a thread on what to do with the data.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/127895?#000000

An ISAC test is also good for hypercoagulation and thrombosis.

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Judie
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I just wanted to add the ISAC test is done by Esoterix (Labcorp can do a draw).

This is a detailed test for hypercoagulation.

If you have this issue, it really gets in the way of your body healing properly.

Lots of info is given on the test. I finally had it done myself.

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Kaseyyy
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I know i have lyme but if i gave this sheet to a lyme doctor, would insurance help coverit? He accepts insurance for only some things i think
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Judie
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It depends on your insurance. Medicare covered most of the tests, I think that says A LOT right there (Medicare doesn't cover a lot of stuff).

The doctor needs to put the correct codes on the lab requisition forms too (there are ones for things like "general fatigue"). That's how to get the insurance to pay. It's all done with codes that the doctors put down.

Just remember, testing will rule things in, but not necessarily out.

I never tested positive for bartonella, but got the tell-tale red stripes about 10 months into treatment.

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BoxerMom
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Judie, I just want to thank you for posting this. I missed it the first time you posted, but then caught it when someone else linked it.

Thank you! [Smile]

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Judie
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Bumping for people new to Lyme.
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