posted
Hi, Really upset always had athletic body from baby on. Heredity thing from dad even when he was sick with cancer he died with all his muscles still.
When I was not able to work out or go anywhere still kept good muscle tone.
Now going out, working out & when I started all this neuro prob. last 9 mo. my muscle tone also went, ALL of it everywhere every part just like that??
No way in certain areas could even work out to get back.
Any, Ideas what it is.
Asked doc about HGH, with all my prob. he is not for it.
Hugggss, to ALL in Need...
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Kerry ...many here including me have had this wasting syndrome ...i believe its bartonella mycoplasm affect8ng lower motor nuerons ...some have had resolution ...some it took just a 3 years of fq and tetracylines ..some pulsed various for 1 ...some abx didnt help ..
my hands and feet were becoming empty pods ..roceph and bvt seemed to have put it on pause ..trying high dose royal jelly ,biotin ,lions mane ,efa and patricia kane protocol .. I have a thread on healing well (anybody else with muscle wasting)with links to my research on the subject feel free to pm me .. rickestsia may be a factor too...hugs back
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Thanks bluelyme, It is funny have so much pain, terrible nausea, neuropathy pain, +++.
When it comes down to how look so embarrassed with this.
Was same in hosp. lately my concern was getting my purse to be able to put on make-up. Yeash, silly with all the serious stuff had going on.
3yrs, Yikes, I am unable to get a doc. to bother with me with the Lyme part of me, even when in hosp. Not 1 ID doc. knew about. This is only way to see ID doc. if you are hospitalized.
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It may be other things too, other than infections (like problems to absorb food, nutrients).
I no longer have lyme, but had somewhat muscle wasting too. A lot of difficulty gaining weight.
It seems to have stopped, but it was not lyme for me (as lyme and coinfections are gone more than 7 years ago). I do think it may have to do with candida though (also infection...).
But I can't be sure. I would check for food allergies or intolerances (such as gluten, milk proteins, stuff like that).
Intolerance or food allergy is a killer, for people with problems to absorb nutrients well....
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I had a lot of muscle wasting. I went from being toned to flabby in like 3 months in 2014. It was depressing.
Luckily, I'm now well enough to work out twice a week and do strength training (light stuff like with resistance bands), and I am putting muscle back on. I'm also regaining all those little balance muscles necessary to...well, to walk in a straight line without stumbling.
However, I have been completely unable to lose weight.
I think it was bartonella that did the muscle wasting, but I like Brussels's suggestion to explore food intolerances, too.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
This is a big deal. I have this problem, too. I used to be a professional dancer, aeons ago. My biggest joy in life was dancing, skating, swimming, biking, working out, etc. Now I have bad muscle atrophy and even motor problems. ANd horrible balance/perceptual issues.
Most people would still say that I have an athletic body, not at all overweight. But doctors mention the lack of muscles, the osteoporosis, etc. ANd I see the atrophy everywhere.
Interesting what you guys have said re Bartonella, etc. I know that the big 3 (Bb, Bart, Babs) + Mycoplasma are biggies for me still. Sigh.
Also, you mentioned how fast it came on. I know that when I got Complex Regional Pain Syndrome, it happened in those areas in a flash. The muscle, skin, bone, nerve atrophy seemed to happen overnight!! Boom!
To be continued.
Posts: 3771 | From around | Registered: Mar 2008
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Of all the zillions of problems I've had with Lyme this is not one of them. But if I did have muscle loss I would be looking really carefully at all my hormones.
Low thyroid can cause muscle wasting -- sometimes very fast and surprising loss of muscle tissue if the thyroid has been attacked.
Low adrenal function blunts the cascade required to synthesize new muscle.
Estrogen is just a miserable hormone and all of us have too much of it; chronically ill people tend to have too much of it because estrogen is synthesized in response to sepsis and shock.
Testosterone is needed; if your HPA axis is messed up you might not be making enough of it.
If it were me and I was really worried I would be scouting for a *really good* primo endocrinologist who's willing to do extensive analysis and testing. These things can get thrown out of balance and then never swing back. I wouldn't be trying this on my own though; too many things can go wrong.
Posts: 2057 | From Florida | Registered: Feb 2015
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I have always had muscle tone too. I noticed a dramatic change once I began menopause. Suddenly, my body started looking old. Ugh. I'm going to check into testosterone and do my best to lift some weights even though I am so weak.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Same here. I was always very muscular and lean.
But after being sick awhile, I was skinny and sort of soft looking, no tone, little visible muscle, no veins, and very weak. for a short time I was able to exercise very lightly, and while some tone returned, I was unable to regain any real muscle mass. (but I had no problem gaining fat, of course!)
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
Hi, yes this happened in few months, every part of me. I been low on estrogen for many yrs.
Had no problems after menopause. Have been on strict diets, testing myself, do not seem to have problem with gluten or milk products.
I was super athletic till became ill. Then was housebound even then kept my muscle tone.
I felt least with everything else all pain, nausea, 100`s seems of other problems / proud kept my athletic build. Grrrrrr
Now, I am working out almost every day & gone just like that. Have been losing weight without trying.
Not sure why same time as dysautomonia, all my new neuro prob. at same time.
Getting very frustrating that seems 1 just keeps losing just about everything including your self esteem.
Thanks for all your notes.
Hugggsss, to All in need..
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
For a while it seemed like the more i used it the more i wojld lose it ...i have been supplementing carnatine ànd using highdose biotin and royal jelly ...
ya my hormones are that of a elderly person but ..this is something else ...sort of unreal ...kerry can you do herbal treatment or bvt ?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
There's something about Lyme that makes the body misuse or reject carnitine. I'm connecting a couple of things here but it might have to do with inappropriate cortisol which also can go along with POTS/dysautonomia. There's also euthyroid sick syndrome where the body stops processing T3 in order to slow the metabolism down, because it wants you to rest and recharge.
I do think there's some hormonal thing happening here.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
sorry kerryblue. I have muscle wasting especially in my quads. It's hard. I wish I had more answers than to keep treating and trying to strengthen.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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