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Muscle/Tissue Loss and Deterioration?

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Posted 8/1/2012 11:41 PM (GMT 0)
Hi,
Can anyone tell me if muscle loss and tissue damage/loss could be a symptom of lyme? I am not talking about the kind of muscle loss from deconditioning or being inactive. But more so, rapid muscle and tissue deterioration that would be similar to some autoimmune attacks that destroys healthy tissues and even breakdown muscle? The kind that is visibly noticeable. Thanks
Posted 8/2/2012 12:42 AM (GMT 0)
Good question..my question is...what is a good liquid supplement to take for bone/muscle health?
Posted 8/2/2012 10:36 AM (GMT 0)
I have had multiple rotator cuff tears, multiple knee tears, ankle tears, wrists recurrent cts, lots of muscle pain and breakdown all from lyme
Posted 8/2/2012 2:02 PM (GMT 0)
Yes, that is one of the lyme issues I have. I have specialized physical therapy 2 times of week for muscle loss and connective tissue malfunctions
Posted 8/2/2012 2:14 PM (GMT 0)
The lyme bug loves collagenous tissues - anything that's easy to spiral through, so yeah unfortunately that means connective tissues (including brains). Glucosamine is a really good supplement to support collagen growth/repair, and so are certain vitamins that you may want to take anyway, such as vitamin C.

I do remember hearing of an herbal blend, muscle tone something-or-other - never tried it but it was recommended by a source that I usually trust, so if you do a little research you might be able to find/look into it.

 

Posted 8/3/2012 6:26 PM (GMT 0)
Thank you for your replies. The muscle loss has been the one symptom that has made me question whether or not this could be lyme so it is interesting to hear this feedback.

I have had some elevated CPK levels which would support muscle breakdown, but I have not had any elevated autoimmune markers. There is the possibility that I could have a myositis but to rule that out I guess i would need a muscle biopsy which I nervous about doing. With that said, I'm actually hoping I actually have Lyme at this point. Something that is treatable. It would be much better than a neuromuscular disease and probably better than an autoimmune of the muscles (myositis).

IF anyone else has actually had elevated CPK levels and/or experienced muscle loss I would be sorry and interested to hear. Thanks
Posted 8/4/2012 3:16 PM (GMT 0)
My CPK test was normal 6 months after the rapid muscle loss and weakness, but even with therapy the regaining of the lost muscle mass is minimal, weakness is improving, burning is still the same.
Posted 10/21/2012 3:34 PM (GMT 0)
Hi!
I am having the same issues! My PT told me I had connective tissue disorder bc I am so weak in scapula muscles and they wing out really bad. I have tons of knots in my tissues on scapula that burn and cause headaches, numbness, tingling. After 1 1/2 years of dying a slow death(pain, swollen knees, weight gain, headaches, numbness, headaches, edema, swollen knees, red pinprick dots, insomnia, depression) with a ton of doctors telling me I have fibromyalgia or CFS, I finally got a
WB and it's Lyme and babesia!

I'm on 4 antibiotics (cycling 2) and a ton of supplements. I keep hearing Lyme loves collagen, connective tissues...
Does anyone have lumps, dimples on front of their thighs? It's not cellulite (massage therapist said lumpy connective tissue) acupuncturist said Lyme attacking tissues. When I stand I have all these indents, bumps, pits on front of legs above knees but no bumps, pits on cellulite at all on back of legs or hips.

When I rub my legs (lying down or standing) it seems like there are little tracks, lines under my skin in my muscle, connective tissue. I know this sounds strange - hard to describe almost like an Ant farm is in there making tracks!

I'm on ABX from my llmd for 4 weeks now...having some good days but bad ones still. I've lost some weight and my mood has lifted...just wondering if this happened to anyone and if it will go away or can I do something for it!
Thx!
Posted 10/21/2012 3:36 PM (GMT 0)

AndyD81 said...
Hi,
Can anyone tell me if muscle loss and tissue damage/loss could be a symptom of lyme? I am not talking about the kind of muscle loss from deconditioning or being inactive. But more so, rapid muscle and tissue deterioration that would be similar to some autoimmune attacks that destroys healthy tissues and even breakdown muscle? The kind that is visibly noticeable. Thanks

I am having the same problem! In my scapula and front inside part of legs above knees
Posted 10/21/2012 4:35 PM (GMT 0)
See my recent post on Spirulina/Chlorella
Posted 10/21/2012 10:58 PM (GMT 0)
what brand spirulina and chlorella to purchase ?? link ?
Posted 10/22/2012 12:59 AM (GMT 0)

teasci said...
Yes, that is one of the lyme issues I have. I have specialized physical therapy 2 times of week for muscle loss and connective tissue malfunctions

What type of PT do you do? Did your Dr just call your condition a connective tissue malfunction? Any info would begreat! What part
Or parts of your body has been affected?
Posted 10/22/2012 1:53 PM (GMT 0)
LottaAnsy,


http://www.iherb.com/Now-Foods-Certified-Organic-Chlorella-500-mg-200-Tablets/21320

and either

http://www.iherb.com/Now-Foods-Certified-Organic-Spirulina-500-mg-180-Tablets/14477

or

http://www.iherb.com/Nutrex-Pure-Hawaiian-Spirulina-Pacifica-Nature-s-Multi-Vitamin-500-mg-400-Tablets/12641

all these brands are safe and tested to have the utmost quality. When taking these together,a 2:1 ratio is important. So,1000mg spirulina,500 mg chlorella.

http://chlorellafactor.com/ has all the info you need on both of them :)
Posted 4/29/2013 5:51 PM (GMT 0)
Hi Andy D81! :)
I read your post and think we may have the same symptoms. 
I've been limping and in terrible pain for 1 1/2 yrs.  3 different Dr's diagnosed me with Lupus and Fibro.  (I was in denial and refused to believe it...I've always suspected lymes...I was mistreated 25 years ago. -My mother and twin sister also diagnosed with lymes but treated differently.)
It started with hip pain and limping and progressed to extremely sore to touch, dented tissue and unable to walk any real distance....no more than around house.  It was localized to a small area on right side of thigh/hip region.  I had a massage and the therapist said it felt like a torn muscle and she could feel the void in the tissue.  Dr's thought it was bursitis.  The only thing that came up on my MRI was Bone Marrow Edema and fluid.  The ortho's and Rhemie's didn't have any answers.

My ANA's were elevated and had some bands on the LabCorp WB IgM P23 Positive and IgG P 41 Positive.
I recently had my blood sent to IGenex. 
Negative on IGenex IGM and IGC but had the following bands
18kDa +
**23 IND
30 kDa +
**34 IND
**39 IND
**41 IND
**83-93 +

So my doc is treating me for lymes with Bactrim 800mg.  After 5 days I feel a little less pain in the hip. I'm hopeful for the first time in a year. I believe the spirochetes have attacked my hip/thigh muscle tissue.  I hope this antibiotic can kill it deep in the tissue.
I wanted to see if you or anyone else has had a similar experience and how it was treated.  It's been awhile since your post...I hope you are healthy and well and can share your experience and any helpful advice!

Thanks for listening!
Cindi :)

 

Posted 4/30/2013 1:18 AM (GMT 0)
Andy,

I have read that the lyme consumes our soft tissues.

My daughter was becoming very skinny while she was sick during her 5 years of illness. It is important to have good nutrition while you are sick, and also that you are able to absorb your nutrition by insuring good GI tract health.

Don
Posted 4/30/2013 6:36 AM (GMT 0)
Hi,

I lost literally all of my muscle power and a LOT of muscle tissue (I'm naturally muscular, so to say, runs in the family), my skin has become very thin, especially these lasts months. I'm not skinny because I'm bloating up because of inflammation, but I certainly feel a huge difference with before. I can't open bottles, can't lift something that's more than 5 kilos (even that is difficult on some days), can't do sports, walking is a challenge, some days I just can't lift my arm or get out of the sofa.
On my chins I have areas where I can feel the tissue loss, feels like a dent.
I'm not healed yet, so I can not say what helped me with that particular problem. I had reactions on previous post though, from members saying it'll all come back - I was happy to hear that.

Good luck!!

Marie
Posted 5/1/2013 12:00 AM (GMT 0)
I'm continuing to lose both muscle strength and mass, particularly in my arms and shoulders, and have the thin skin MarieLS describes. I've also noticed a loss of muscle in my face and neck which has recently aged my appearance.

I've had a torn ACL, meniscus and shoulder tears in the last year. I thought this very strange since I've always been very active and the tears occurred during minimal exertion. Maybe Lyme related...

I tested pos for LD on IgM and am being treated for LD and Babesia but I agonize every single day on whether my symptoms are related to these or to something else/additional.
Posted 5/1/2013 9:55 PM (GMT 0)
My husband has muscle atrophy and lost a lot of weight. It is one of the reasons the neurologist diagnosed him with ALS. It was verified through blood testing at Igenex that he has Lyme so the answer of course is yes.
Posted 5/2/2013 12:37 AM (GMT 0)
I lost so much muscle and weight like you guys. I was really hardcore cardio girl fit light weights and running and swimming before I got sick. Muscle wasted away, lost weight all of it.

Strangely ate tons of protein and all the right food but it seems the bugs really take our nutrients from our cells like they say. Just this last couple of months put a "bit" back on thankfully eating more good fats coconut oil and olive oil and more protein, but muscle tone etc is gone, gone, gone. I could literally pull up and pull down my jeans not opening/unzipping them. I looked like a holocaust person and I was already lean.
Posted 11/29/2015 7:00 AM (GMT 0)
Did abx help? 1run...has any one gotten muscle tissue back?
Posted 11/29/2015 1:33 PM (GMT 0)
Yes you can regain the muscle mass, i mean if body builders can gain more muscle mass through the use of amino acids, why shouldn't we ?

Amino acid supplementation is best, especially L-Glutamine. It also helps restore intestinal health.
www.ncbi.nlm.nih.gov/pubmed/25811544
www.livestrong.com/article/542549-what-does-l-glutamine-do-in-the-body/

I use a powder supplement from the German clinic, it contains

L-Alanine
L-Arginine
L-Aspartic acid
L-Cysteine
L-Glutamic acid
L-Glycine
L-Histidine
L-Isoleucine
L-Leucine
L-Lysine
L-Methionine
L-Phenylalanine
L-Proline
L-Serine
L-Threonine
L-Tryptophane
L-Tyrosine
L-Valine

It is awesome, also tastes good. I used to take it with almond milk but recently because my stomach is much better i switched to organic cow milk (or goat milk when i can find it).

Buhner also recommends L-arginine 5000 mg daily in divided doses (don't use it if you have active herpes, chicken pox, or shingles) - it's on the front page on his website buhnerhealinglyme.com

But you need large amounts, several grams per day. 500mg a day will maybe help your intestines but not build muscle... When you take several grams, it is usually a good idea to take it with food. If you take small amunts 500-1000mgr you can take on empty stomach.
Posted 11/29/2015 7:52 PM (GMT 0)
I read an email from a friend today which led me to this site. I have a question about the L-Glutamine. On the web, I found scare talk that it can act as a neurotoxin. Is that because it is in the isolated form as in not in combination with other amino acids?
Posted 11/29/2015 8:12 PM (GMT 0)
it's the most abundant aminoacid in the body, found in lots of types of food.
/en.wikipedia.org/wiki/Glutamine

dont think it's neurotoxic.
Posted 4/27/2016 8:06 PM (GMT 0)
I have had blood test and ct scans and all were normal I had 2 lyme test and we're negetive. I started having really bad muscle aches and joint pains and felt hard to sometimes get a deep breath . They retested me again in Jan of 2016 and first part came back positive second part negetive . They started treating me about 3 weeks on doxycycline . My question now is I lost about 9 pounds in 3 months and muscle . My hands look thin ' face and feet is this really lymes disease
Posted 4/27/2016 8:42 PM (GMT 0)
Hi Miller7 - welcome to our community!

What lab did your lyme test? Most labs are not very good - many, many false negatives.
The lab you should do a test with is Igenex (in California) You can order the test kit, it's delivered to your home...and get a Dr. to sign the lab req...and get the blood draw...ship it back to Igenex.
The Lyme Western Blot Igm and IgG is $210.

Now, Igenex is better than the others...but there are still false negatives - as a positive test relies on our immune system to produce antibodies...which in Lyme - is suppressed.

I lost 14 pounds when Lyme first hit me. In a matter of weeks from 138-124 - and my muscles were limp...i couldn't flex them at all. I was in good shape prior to that.
The backs of my hands look like I'm 80 years old - looks like I've lost the collagen...very veiny now.
My face - under my eyes - is hollow.
Yes, it can be lyme disease.

Do you have the results of the Lyme test? Can you type it out in a post? Sometimes they are an overall negative, but there are indications that show you have been exposed to lyme bacteria. There may be some bands show positive...or 'present' - but not enough for the lab to call the result a positive.
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