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» LymeNet Flash » Questions and Discussion » Medical Questions » Do I still have Lyme or a separate Neuro problem?

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Author Topic: Do I still have Lyme or a separate Neuro problem?
LA
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Member # 26353

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I had initially had CDC positive IgM (3+ band), but negative IgG (1+ band) back in June. I had 28 days of Doxy and was 90% better. 2-3 weeks after stopping Doxy,the symptoms all came back. (Tiredness, muscle pain, twitching, parasethesia, myoclonus, bowel and bladder problems, brain fog)I have had MRIs of my head to my tailbone, all negative. Spinal tap- negative, ENG negative

2 Months after finishing the antibiotics, this is my the bloodwork (from LabCorp):

Western Blot
IgG:
41 Present/Abnormal
93, 66, 58, 45, 39, 30, 28, 23, 18 absent
IgG = Negative

IgM:
23 Present/Abnormal
41 & 39 Absent
IgM = Positive

Lyme PCR = Negative

Lyme IgG/IgM Ab= 1.01 High (Normal 0-0.90)

CBC - all normal
C reactive protein = 10 High (Normal 0-4.9)
ANA and Sed Rate = negative / normal

Doctors keep telling me to go to a Neurologist, it is a neurological problem, not Lyme Disease. I don't know what to do.

Posts: 60 | From NJ | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
kimmie
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Positive IGM with symptoms indicates active lyme infection. Elevated CRP (c reactive protein) indicates elevated inflammation.

Your 28 days of treatment has not been enough to obtain a cure/remission.

You would be best seeing an LLMD..lyme literate medical doctor as you need aggressive and longer antibiotic therapy. You can do a search under looking for a doc...just post your location. The sooner the better.

Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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You were under-treated, post in seeking a doctor to find a Lyme specialist near you.

This movie trailer might help you to understand why you were under-treated - www.underourskin.com

You should have been completely better for at least four weeks before stopping the doxycycline. Chances are you were on too low a dose, too ..... you should have been taking about 400 mg per day.

--------------------
sixgoofykids.blogspot.com

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Keebler
Honored Contributor (25K+ posts)
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-
You don't need any more lyme tests. Once you have a positive, until you feel better for a couple months, you should be under treatment -and with specific support measures.

After that, even if you have a flare, no lyme test is needed but you would want to consult with your LLMD to get right on it to calm things back down. There is no cure for lyme but, once in remission, if you slip out of that it's easier to bring under control if you address it early on. Many find good, long remissions.

Now, you do need to find a lyme literate MD (LLMD) and also be assessed for other tick-borne infections.

As you have 57 posts and have been here a few months, I'm very surprised that no one told you that 28 days of one antibiotic at a low dose is not adequate treatment. I don't know how that was skipped over. I do hope you find good, substantial care soon.

Good luck.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-
LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.

LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.

ILADS = International Lyme and Associated Diseases Society

TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.

STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.

Lyme is just one of many chronic stealth infections.
-

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Keebler
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Links to copy and paste to your study file:
--------------------------------

www.ilads.org

ILADS - be sure to read all the articles in "Articles and Presentions" Get the DVDs of ILADS of past seminars.

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

http://www.lymediseaseassociation.org/

Lyme Disease ASSOCIATION

- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.

This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.

-================

http://cassia.org/checklist.htm

Symptom checklist for lyme.

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

http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

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

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

LYME DISEASE MEDICAL LITERATURE SUMMARIES

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

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

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

This explains WHY you need an ILADS doctor:

http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

Excerpts:

`` . . . Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.

* To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . .

`` . . . Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation. . . .

". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."

. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . . ------


- Be sure to read the full article as it discusses the sharp differences between CDC / IDSA and ILADS' understanding of borrelia.

- Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
======================

www.jneuroinflammation.com/content/5/1/40

http://www.jneuroinflammation.com/content/5/1/40/abstract

Journal of Neuroinflammation 2008, 5:40

25 September, 2008

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis

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

http://www.underourskin.com

Documentary: UNDER OUR SKIN (you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)

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

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

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

It is best to see a LLMD in person first for a physical exam, history and symptom assessment. Then the LLMD can guide you to the best tests.

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

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

TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com

IGENEX

-----
There are a couple other good labs for certain tests. Your LLMD will know.

http://www.clongen.com/

CLONGEN LABS

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

http://www.frylabs.com/

FRY LABORATORIES

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

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

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

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

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

Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates

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

Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605

MAKING THE MOST OF YOUR LLMD VISIT
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

------------
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.

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

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

It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.

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

THE LYME DISEASE SOLUTION (2008)- by KS, MD

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

Web site: www.lymedoctor.com
-

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
https://acrobat.com/#d=sbb-EmpQrQTgrPoezLGreg

The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.

- by Michael D. Parent (2010)

- 82 pages

* This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy. The abstracts are available on U.S. Government's Public Medical Database [pubmed.gov]
-

METALLIC BLUE - E-mail: [email protected]
-

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lymeshmyme
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I'm no doctor, nor am I an expert, but I echo what everyong else has said... it sounds like Lyme to me.
Posts: 256 | From Texas | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

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Don't go to the neuro. Your lyme was undertreated. (too low a dose and too short a course.) Find an LLMD fast.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3123 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
   

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