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» LymeNet Flash » Questions and Discussion » Medical Questions » Testing

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Author Topic: Testing
Dartmccall
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I had a Western Blot in October that was positive forctwo strands of IGM . Was then treated with thirty days of Doxycycline. Since then I've had two more WB that are negative (by two different labs). Doctor still treated with 14 days of iv Rocephin. I still have all original symptoms and a few new ones. Wondering how they test for co-infections?

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Dartmccall

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Lymetoo
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It's a separate test. Sounds like you need a REAL LLMD right away.

Which two bands showed up? And which labs were used?

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--Lymetutu--
Opinions, not medical advice!

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droid1226
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The problem isn't the WB being negative, the dr's interpretation of the WB is wrong. If you have two bands, and still have symptoms, you have lyme. Get to an LLMD ASAP.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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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 that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease

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

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" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

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

The Lyme Controversy:

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

http://www.youtube.com/watch?v=8yk0C-uX9cU&feature=related
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Keebler
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Doxycyline (or many other antibiotics) can cause lyme to go into the "cyst" form within 20 minutes of taking the first dose.

Antibiotics are not effective against this form of lyme and it can go into "hiding" and come back later as chronic lyme, harder to treat.

For that reason, many LLMDs also use what is called a "cyst-buster" Rx such as Flagyl:

Re: Flagyl / Tinidazole

http://www.ncbi.nlm.nih.gov/pubmed/21753890

Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.

Excerpt:

. . . Conclusion

Antibiotics have varying effects on the different morphological forms of B. burgdorferi.

Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.

See:

http://www.lymeinfo.net/medical/LDCysts.pdf

Lyme Disease - Studies on the Cystic Form of Borrelia bergdorferi

Mechanisms of Persistence - 17 page PDF See Table of Contents on Page 4

Links for each below do not have URLs that will copy and paste, you have to keep going back to the main page and then scroll down.

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

LYME DISEASE MEDICAL LITERATURE SUMMARIES

Bottom of page, links:

* Cystic Form of Bb: An Introduction

Page 4: Table of contents for DIFFERENT FORMS


* Cystic Form of Bb & Other Spirochetes: Advanced

Lyme Disease - Survival in Adverse Condition

30 page pdf -- page 17: cystic form

DIFFERENT FORMS through this work


* Cystic Forms of Spirochetes: A Complete Bibliography, 1905-2010

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And this is why you need an ILADS-educated LLMD. The KNOW all this. Other doctors (of the IDSA mind-warp) do not and do not want to know more about the complexity lyme. They want to discount it and those who have it.
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Keebler
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Now, there are some out there who have done okay with a short course of a single Rx. What's important to remember is that there are many strains of lyme, some are just far less complex and far easier on the patient.

Still, it's unknown if such a short-term success may have "lyme in hiding" so to speak. It may have gone into the dormant cyst form and could return.

The book "Cure Unknown" by Pamela Weintraub (a medical writer) details why some do better than others.

What IS clear is that if someone is still ill, they are still ill. Symptoms must not be dismissed as the "normal aches & pains of daily living" as the IDSA doctor will chastise the patient.

And they need a doctor who is among the best educated in this extremely complex matter. That kind of doctor is what we call a lyme literate doctor and most are either members or have attended ILADS confernces, or in other ways, work in that area of study.
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Keebler
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Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods.

Infection(s), heavy metals, parasites, and candida all go along with this and affect so many body functions and systems.

Even the treatment can be hard on the body. So, support methods are absolutly essential.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
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Keebler
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Oh, you do not need to be retested for lyme. You never needed a 2nd or 3rd test.
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Dartmccall
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Thank you so much for all the info. I am waiting to hear back from Dr C in Florida. They review my patient info before they'll even make an appt. but he comes recommended. I am trying to read all the information I can squeeze in. I have a very low body temp (97 ish) so I think the adrenal support is a great idea. I will try to purchase that ASAP. At least I know I'm not crazy even though my tests show I'm fine, and I don't feel fine!!
Thanks so much for all the support

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Dartmccall

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Dartmccall
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I just started Gaia Adrenal Health so we'll see if that helps with low temps and dizziness and low blood pressure. I'm worried about side effects though.

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Dartmccall

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Lymetoo
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Your test is not "fine."

[Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Dartmccall
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I agree. Too bad my doctor doesn't realize that. When I told him about my low temps, he just ignored it completely. Hopefully Dr C will shed done light on that too.
Thanks [Smile]

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Dartmccall

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emla999/Lyme
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Dartmccall,

The low body temperature and low blood pressure are also common in people with hyopthyroidism.

And in my opinion, if you have had a doctor tell you that you are not hypothyroid and that your thyroid is fine that does not mean that you are not hypothyroid and that your thyroid is fine. I say this because blood testing for hypothyroidism is not 100% accurrate.


http://recoveringwitht3.com/blog/thyroid-blood-tests-part-6-can-everyone-rely-ft4-ft3-and-rt3-blood-tests-during-treatment


http://recoveringwitht3.com/blog/thyroid-blood-tests-part-1-reference-ranges


Quotes from the article on the top link:


"There is no test for the actual level of cell regulation by thyroid hormone, relative to a healthy rate for us as individuals. Putting this more simply, there is no blood test that can indicate how well our bodies are actually responding to thyroid hormone. Let no one ever tell you otherwise."


"Simply looking at a blood artifact like FT3 or RT3 will not reveal a problem for some people. Since we have no useful laboratory tests to measure the actual level of regulation of cell function by thyroid hormone, then we can't know for sure what is really occurring within the tissues of the body"


"This research suggest that the current thyroid hormone blood tests of TSH, FT4 and FT3 fail to reflect actual levels of T3 in the body and that patients can continue to experience hypothyroidism even when thyroid hormone blood tests are normal. "


See the following link for more details:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC185993/


Some people have "normal" thyroid hormone panels but they still have symptoms of hypothyroidism and when they take the correct thyroid meds and use the correct dosing schedule many of those people seem to feel better.


Your thyroid hormone levels can also fluctuate every 30 minutes throughout the day and thus that can make diagnosing hypothyroidism with blood tests more difficult in some cases.


http://www.ncbi.nlm.nih.gov/pubmed/716774


"A significant regular variation with a cycle-length of half an hour was found in TSH, free T3 and free T4. This rhythm accounted for a significant part of the total variation in the levels of TSH, free T3 and free T4."


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emla999/Lyme
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Also, speaking of adrenal support.


Paul Robinson, developed a method of administiring a T3 containing thyroid medication that corrected his hypothyroidism and his adrenal fatigue and other people with hypothyroidism and adrenal fatigue have also reported similar benefits from his circadian T3 protocol.


You can read more about this protocol on the links down bellow.


http://www.stopthethyroidmadness.com/t3cm-success-stories/


http://www.stopthethyroidmadness.com/t3-circadian-method-for-adrenals/


http://www.youtube.com/watch?v=YDV1qePLtLs


There is a yahoo group that is made up of people using the Circadian T3 method to correct "adrenal fatigue" by taking a T3 containing thyroid medication on a unique dosing schedule.


http://health.groups.yahoo.com/group/T3CM/


Paul Robinson found that your thyroid hormone production and cortisol production followed a circadian rhythm. And he also found that you can often correct adrenal insufficiency and cortisol production when you give a T3 containing thyroid medication in a way that is in tune with your body's natural circadian rhythm.


So, adrenal hormone production can apparently be effected by the health of your thyroid gland. And at least in some cases, correcting hypothyroidism can cause your adrenal gland function to return to normal.


.

[ 01-30-2013, 03:41 PM: Message edited by: emla999/Lyme ]

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Dartmccall
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Wow what interesting information. It appears that some of the hypothyroidism condition are similar to Lyme symptoms. I have the temp problems, dizziness, heavy sore arms, low blood pressure, and even the tightness in my throat and neck. I have an appt with an endocrinologist this Friday, even though my thyroid tests have come back normal. I just started Adrenal Health by Gaia Herbs as well but am starting with only one a day.

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Dartmccall

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emla999/Lyme
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Dartmccall,

Yes, many of the symptoms that can be caused by hypothyroidism do indeed overlap with many of the same symptoms that are often attributed to chronic Lyme Disease.


And unfortunately, in my opinion and in my personal experience, alot of endocrinologist and medical doctors do not always know how to properly diagnose or treat hypothyroidism.


So, in my opinion, there may be alot of chronically people out there that are ill due to them having undiagnosed hypothyroidism and they do not know that they have it.


And even if they do know that they have hypothyroidism some of those people may still be experiencing symptoms due to them not being treated with either the correct type of thyroid hormone, or not being given the correct dosage of thyroid hormone or they are not taking their thyroid hormones at the correct time of the day.


So, you may have to go see a more holistic oriented medical doctor. But even those types of doctors don't always seem to know how to correctly diagnose and treat hypotyhroidism.


And some people have had to resort to treating themselves. Though, I don't advise you to do so. But some people don't seem to have a choice.


Many doctors will not perform a full thyroid panel that includes the measurement of Free T3, Free T4, T3, T4, Reverse T3 (RT3) and antibodies.


And even if your thyroid levels come back normal that does not mean that you are not hypothyroid because blood testing is not 100% accurate. Your blood thyroid hormone blood levels can fluctuate throughout the day. And many doctors use the outdated refrence range for thyroid hormones.


And some people have found that even though their thyroid blood test were "normal". When they take a thyroid medication such as Cytomel, many of their symptoms go away completely or their symptoms improve. And that would seem to imply that those people actually had hypothyroidism even though their thyroid blood hormones were "normal" .


And to quote Paul Robinson's comments about hypothyroidism...


"There is no blood test that can indicate how well our bodies are actually responding to thyroid hormone. Let no one ever tell you otherwise."


"Since we have no useful laboratory tests to measure the actual level of regulation of cell function by thyroid hormone, then we can't know for sure what is really occurring within the tissues of the body"


.

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