This is topic severely weakened leg muscles in forum Medical Questions at LymeNet Flash.


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Posted by Ellen101 (Member # 35432) on :
 
Is anyone else dealing with severely weakened leg muscles. I want to try to do some form of exercising so I tried doing just some of the simple walking/toning tapes and I was horrified at how weak my muslces have become.

I could barely do the moves at all. My main symptom has been extreme muscle and nerve pain in my hips and legs since diagnosis.

When I went to PT she could not believe how inflamed and weak the muslces had become. Will they ever improve? Any ideas on the best type of exercise to do without inflaming things more?
 
Posted by Sammi (Member # 110) on :
 
I attribute muscle weakness like you describe to Babs. Do you have it?
 
Posted by Sammi (Member # 110) on :
 
I attribute muscle weakness like you describe to Babs. Do you have it?
 
Posted by Ellen101 (Member # 35432) on :
 
I tested negative for it. Positive for RMSF and mycoplasma.
 
Posted by outerspace1226 (Member # 34274) on :
 
toxoplasma? causes very weak/pain in leg muscles. you gotta force your way through some sort of exercise. some is better than none.
 
Posted by Ellen101 (Member # 35432) on :
 
Yeah, not sure about "forcing my way through it". I was in so much pain last night I could not sleep. I'm wondering if exercises that work particular muscles should be avoided and maybe I need to concentrate on just gentle stretching.
 
Posted by Sammi (Member # 110) on :
 
Gentle stretching can be very beneficial.

Besides muscle weakness, do you have any other hallmark Babs symptoms such as shortness of breath, headaches, night sweats, etc.?
 
Posted by Ellen101 (Member # 35432) on :
 
Some night sweats, but I really think its because the rifampin has affected my estradiol.
The pain seems to be coming from my SI joints. Can't even touch them. Tried a chiropractor, no help.
 
Posted by nonna05 (Member # 33557) on :
 
If your supplementing Estadiol, then yes it's affecting it..Rifampin does that to many meds...You should adjust up while on it..That said it didn't matter what Hormone they put me on ..
'
The pain and fatigue and weakness are the worst...

TF, sixgoofy and many others say we must do some sort of exercise when you get to point can try..

I have tried a coulple time lately , and was way to much yet...
I was chronic before diagnosed..
Yet I can tell my body is wanting to try...soon.. I'm getting small hand weights to start and a band for legs to push..

Did you see the u-tube 2012 for DR.B????


He say's it's a must...So I must...... I just tried the stairs a bit more often lately to get what I can moving...............


Did you watch UNDER OUR SKIN/?/

I don't know her name , she was younger and worked with a band ,,,

She just kept saying the Pain, pain, pain,
 
Posted by Keebler (Member # 12673) on :
 
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Of course, by sure that the infection(s) adequately addressed by an ILADS-educated LL doctor.

Get THEIR advice on this. You may also want to consult an ILADS-educated LL ND (naturopathic doctor). Most will know also about Qi Gong (Chi Gong) and can give you some simple movements.

You may have to adjust your idea of what you SHOULD be able to do right now.

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

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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Posted by Keebler (Member # 12673) on :
 
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Mitochondria support in detail here:
--------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=077325;p=0#000000

Topic: To everyone with CARDIAC symptoms please read!

Includes articles & discussion about exercise safety & methods

MITOCHONDRIA, MYELIN & ADRENAL SUPPORT - and how these can help in various ways.
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Posted by Keebler (Member # 12673) on :
 
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Yoga &/or the most gentle kinds Qi Gong, adapted to your needs -

- and even massage from a LL massage therapist who can move your body FOR you with you then providing some resistance -

may be best for your muscles right now.

Any PT you work with needs to be very lyme literate and ILADS aware. A body with lyme simply cannot be treated the same as one without.

But most insurance companies (especially Medicare) will not allow for that. Certain measurements are supposed to improve rapidly and most PTs are very limited in how much hands-on work they are allowed to do as it's seen as pampering.

You might share the links above and these, too, with your PT:

http://cassia.org/essay.htm

When To Suspect Lyme Disease

� by John D. Bleiweiss, M.D.

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

www.underourskin.com

UNDER OUR SKIN - check it out on Hulu

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

www.ilads.org

ILADS
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Posted by Keebler (Member # 12673) on :
 
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http://www.feldenkrais.com/events/atm

Feldenkrais Awareness Through Movement� CLASSES

-------
http://www.feldenkrais.com/practitioners/find

Search for Guild Certified Feldenkrais Practitioners

[Some physical therapists are also trained in Feldenkrais. That would be great if insurance would cover it.]

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

http://www.feldenkraisresources.com/

Feldenkrais Resources � CDs, DVDs, books, workshops, etc.

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

http://www.feldenkrais.com/method/article/walking_the_earth/

WALKING THE EARTH - By Deedee Eisenberg

Excerpt:

. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet �refused to follow orders.�

Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.

At this point, Sarah�s massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.

�In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.

I knew I was walking incorrectly, but I didn�t know how to correct the problem�now that I�m walking better, I have more stamina,� she explains. . . .
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Posted by Keebler (Member # 12673) on :
 
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MAGNESIUM & FISH OIL - and key antioxidants - can help address inflammation.

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

Avoid glucosamine, though. It may make lyme worse.

Glucosamine (maybe all form? maybe just one form?) should not be used by those with lyme, according to the authors here:

http://www.townsendletter.com/FebMar2006/lyme0206.htm

THE BIOCHEMISTRY OF LYME

3/4 of the way down, Excerpt:

[section] Carbohydrates Consumed by Lyme Spirochete

An effort to determine which carbohydrates Bb consumes revealed that the organism utilizes the monosaccharides glucose, mannose and N-acetylglucosamine, as well as the disaccharides maltose and chitobiose.

A popular treatment for arthritis includes the administration of chondroitin sulfate and N-acetylglucosamine.

If the arthritis is Lyme-induced, N-acetylglucosamine is contraindicated. 22 (See Chart 14.)

- Full article at link above.
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Posted by Keebler (Member # 12673) on :
 
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Web search: SOTA LIGHTWORKS

It's a LED light wand for joints.

Carol in PA knows much about this. It has helped many with pain relief.
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Posted by Keebler (Member # 12673) on :
 
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http://icmr.nic.in/ijmr/2006/august/0804.pdf

THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTIONS

Indian J Med Res 124, August 2006, pp 129-148

- by Anura V. Kurpad

Fifteen pages of text.

Excerpt from abstract on page one:

. . . In general, the amount of extra protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . .

[note: see what author states about lysine supplementation appearing to help immune function.]
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