This is topic Is this late stage lymes? in forum Medical Questions at LymeNet Flash.


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Posted by kcmorton (Member # 27806) on :
 
Hi, I am new to the post and wondered if anyone had similar symptoms..I had a bullseye rash 3 years ago, was treated 3 weeks with doxy, never had any problems at all until 6 months ago. Every night my limbs go numb, sometimes during the day. I have become very anxious. Have done mri, lumbar puncture to test for ms, tons of bloodwork...nothing turning up. My igenex has a couple bands positive, several indeterminate, they are saying negative. This week my tongue and right side of my face and upper body went numb. 6 months with no answers.....feeling very frustrated. Does this sound like lymes to anyone?
 
Posted by bcb1200 (Member # 25745) on :
 
Yes...sounds like lyme. Some LLMD's feel if you have any bands or IND present then you have it.

Suggest you find an LLMD. Check out the "seeking a doctor" section of this site or contact www.ilads.org
 
Posted by sixgoofykids (Member # 11141) on :
 
A bullseye rash is diagnostic of lyme, so you know for sure you have been exposed. Symptoms would indicate Lyme without testing because of the bullseye rash.

Sounds like Bell's Palsy maybe? That is a typical lyme symptom.

I would schedule to see an LLMD if you haven't already. Three weeks is very little for Lyme treatment.
 
Posted by Paul Mall (Member # 27581) on :
 
I did have the right side of my face go numb and thought I was having a stroke at one point

Paul
 
Posted by Lymetoo (Member # 743) on :
 
Sounds like Lyme to me too. Three weeks of doxy is usually not enough to kill it out.

Check these links!!!!

Dr C's Western Blot explanation:

http://tinyurl.com/ffn3x

SEEKING A DOCTOR (post here to find a Dr!!)

http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

If you'll post your test results (bands) we can help you interpret.
 
Posted by Keebler (Member # 12673) on :
 
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Sadly, it sound exactly like lyme. Find a Lyme Literate Medical doctor.

A lumbar puncture is NOT a good test for lyme. Not at all. And MS is often undiagnosed lyme or a similar stealth infection.

You had the bulleye rash. You don't need anymore lyme tests. You should be assessed for other tick-borne infections, however. First see a LLMD and go from there.

Avoid all doctors who are not ILADS-educated, so to speak.

www.ilads.org

ILADS

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

www.igenex.com

IGENEX - testing for the full range of TBD (tick-borne disease)

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

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

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


http://www.lymediseaseassociation.org/

Lyme Disease ASSOCIATION

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

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.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:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

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

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

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

This article has much attention on both lyme and Cpn:

http://tinyurl.com/preview.php?num=64y3rv

(then clink "PROCEED TO THIS SITE")

May 2008 Volume 39 Number 5 LABMEDICINE
www.labmedicine.com - American Society for Clinical Pathology

CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES

- by Garth Nicolson, Ph.D.

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

http://www.underourskin.com

Documentary: UNDER OUR SKIN

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

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

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

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.

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

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

MAKING THE MOST OF YOUR LLMD VISIT
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Posted by Keebler (Member # 12673) on :
 
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http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

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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

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

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

125 pages - Powerpoint presentation

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

By the same author as above, Chapter 1 from the book "Insights Into Lyme Disease Treatment"

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

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

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1272566632&sr=1-1

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

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


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

A Treatment Guide: Lyme and other Chronic Infections - by DKt, MD, PhD

October 2009 - 87 pages

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http://www.klinghardtneurobiology.com/popups/PC1.html

Online Radio Interview

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

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

HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection by DKr, M.D. (2004)

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

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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Posted by Keebler (Member # 12673) on :
 
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How close are you to Bozeman, Montana? There is an ILADS-educated LL ND (naturopathic doctor) there.

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

http://www.lymenet.org/SupportGroups/

Find area Lyme Support Groups -- to help find a LLMD or LL ND, and lyme friendly local support.
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Posted by Consuelachacha (Member # 26538) on :
 
Definitely sounds like Lyme.

If you still have the rash, I recommend taking a picture to have for reference.

Hopefully you will find an LLMD to help you.

Please don't wast $1,000's of dollars like I have on Dr.s that "don't believe in Lyme" and/or just are not educated about Lyme.

Good luck to you.
 
Posted by kcmorton (Member # 27806) on :
 
Thank you so much for the responses,so very helpful!! I am experiencing some numbness and tingling in my tongue now?
My results from igenex...31, 34,39 IND 41+++
45++ and 58+
I am trying to get in to see someone as soon as possible, still looking for lyme doc. Does anti anxiety med help at all with symptom relief until I can be seen?
THANK YOU!!
 
Posted by needhelp38 (Member # 27665) on :
 
Hi kcmorton

I too had the same thing happen to me. I have had Bells Palsy 5 times and it has effected my tongue and right side of my face as well as my throat and gag reflex. I have not been tested yet I have been diagnosed as having MS. I have an apt on Sept 9th with a LLMD to be tested. I was bitten as a child but don't remember having a rash. I was sick a lot growing up and now I am 38 and I have a lot of neurological probelems. Like everyone on here PLEASE see a LLMD they are different than a regular doctor or even a neurologist. I just found out that what they say is true doctors DO NOT BELIEVE IN LYME I asked my primary and OBGYN just to see and they hesitated to say anything. Do it get to an LLMD no matter what it takes, you do not want it to start causing vision or neurological symptoms. If you want to read my story, it is on here under "Wrong Diagnosis". I hope it may help and with you definitly having the rash you need to get to the doctor before it starts causing havoc on your body.

I don't know if this will help you but I take Klonopin for anxiety, depression, and the anger outbursts I have and it does help me. Without it I would be bouncing off the walls and full of rage I hope this helps. Take care and good luck.
 


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