Haven't been here in a few years after being treated aggressively for Neurolyme in 2006.
I spent two years on antibiotics, one on orals and one full year on rocephin IV.
I had two years where I had no symptoms and no treatment since the initial treatment in 2006.
Over the last few years my symptoms tend to creep up and I end up pulsing for three straight months and have nine months where I don't treat.
Recently I started losing muscle bodywide I first noticed I was having difficulty sitting because my glute muscels were disappearing.
I had the fasciculations and body jerks first time around but never muscle loss.
Then my shoe size went down a 1/2 size. I lost all the muscle in my right ankle and it's now atrophying in the left ankle area. The padding under my feet is also gone. I used to be able to wear nothing on my hardwood floors, now I need bedroom slippers.
So I end up going to the University of Pennsylvania, saw a Neuromuscular Dr. who specializes in ALS. She did an emg and ruled out ALS. She said I had a good emg, and that I didn't fit the ALS patient. She said ALS tends to go up one side of the body then the next.
She couldn't explain the muscle loss since her job as a Dr. was to rule out ALS.
She said though that I should have had a teaspoon of muscle over the ankle and had none.
She did say she thought it might be radiculopathy of Lumbar 4/5. I have a history of three neck surgerys so I told her I'd follow up with my spine Dr. in California.
I got back to San Francisco and my spine Dr. set me up with two neurosurgeons. Both ruled out back surgery. My neurosurgeon at UCSF felt I had either a myopathy or adult onset dystrophy.
I'm seeing a nerve/muscle Dr. at UCSF to see if they can shed any light on what's going on. Both neurosurgeons said Lyme might be the culprit.
My question after all this, has anyone out there had significant muscle/tissue loss with lyme???
I hate to blame it all on lyme, but I'm clueless. Both neurosurgeons can not believe I can still walk on my right foot. The loss of muscle is very obvious. Your thoughts???
Posted by cht girl (Member # 26170) on :
Absolutely. The muscle loss/atrophy has been my most prominent symptom. Fasciculations, muscle loss and slowly progressive weakness have been the hallmarks of my neurolyme.
I have been on IV antibiotics for 1 and 1/2 years, and most days feel very well, but I still get a "flare" of muscle spasms, fasciculations and then a few days of weakness in the involved muscles every 1-2 months. My greatest fear is that when I stop the IVs, it will begin to progress again. (orals helped reduce my symptoms but never to this degree).
I am so glad ALS has been ruled out for you, and I hope you get some answers on how to control the myopathy, etc...
Good luck
Posted by Maryinvt2 (Member # 37822) on :
I lost muscle strength in my legs in Denver this summer. I had test done and found I was low in Vitamin D3. And after starting to take it I found I gained my muscle strength all back in 2 1/2 to 3 weeks. But I think my case was a different set of circumstances.
Posted by poppy (Member # 5355) on :
What you said about your ankles, first one, then the other, makes me wonder if this loss isn't asymmetric elsewhere (not happening at the same time on both sides). I know the doc said this was characteristic of ALS, but so is it characteristic of ALS/Lyme.
If you haven't been here in several years, maybe you don't realize there is a whole group of people like this, treated at one time by Dr. Martz and Dr. Harvey. They found that most of these patients couldn't take full doses of meds, had to be lower because the inflammation from the herx added to the inflammation from the infection and killed off neurons. Dead neurons lead to muscle atrophy. Lyme is a neurological disease.
If these people were not already too advanced, they could be helped--improved or stabilized. I have also heard of people with significant muscle wasting who regained the muscle with treatment for lyme and got to remission.
There have been a number of posts on this subject, maybe a search of the archives?
Posted by sfcharm (Member # 9392) on :
up
Posted by lyme-o (Member # 35115) on :
Hubby has been positive for Lyme since April of this year. Started with foot drop 2 years ago. We had no idea what was happening. Went to LLMD October last year. Now he has a pronounced limp. LLmD pretty much a quack. April of this year, sees LLMD topnotch in the country. Now using a cane. Fingers don't work well, fatigue all the time. Today he uses a walker. Has been off IV for 3 weeks. Had a problem. Will start IV Levaquin this week. Scares me from what I read. Breathing and muscle weakness major issues. Hopefully new IV will help
Posted by sfcharm (Member # 9392) on :
up
Posted by Jennifer70 (Member # 30280) on :
yes definitely. Im finally starting to build some back up but prior to treatment, I didnt know i had lyme and went to a personal trainer at the gym, and pushed myself to lift weights etc..and literally nothing! didnt build any muscle at all, it was insane.
Now i've been treated for a while and im doing yoga totally noticing a huge difference. I have fasciculation (muscle twitches and rumblings)
Posted by 2young2dieMom (Member # 25434) on :
I was dxd with ALS at Yale over 2 years ago. I've had significant muscle loss in my shoulders, hips, glutes and now my breathing has begun to get difficult. I also thought my neck was the problem but many spinal surgeons have said it isn't. My EMG is abnormal but 2 other neuros said I didn't have ALS.
The breathing issues are very scary. I just got a cpap and am trying to get used to it. I'm taking mepron now. Seems to help alittle.
I've only tested positive for protomyxoa, nothing else in all my Igenex tests.
Posted by canefan17 (Member # 22149) on :
2young,
Have you looked into Myco/Bart
I have same issue as you and for me it's def Bart/Myco (tested highly positive for Myco P on IgG)
Dr K has also said he believes ALS to be Bart/Myco.
That's in his old notes
Posted by paulieinct (Member # 17514) on :
4 1/2 years into treatment, and feel about 80%. But I have had symptoms that were ALS-like. Even now, I can't really run. But I am 64. What is normal for 64?
I know I've been deconditioned and need to get back to the gym.
But I would like to share that I've been taking DHEA for years now, on and off. In my case, I know it feeds my muscles, via testosterone. I know it's making testosterone because I see body-hair growing on by forearms, where I used to be hairless.
Might be worth a shot for those concerned about muscle atrophy. I take 25 mg/day, sometimes 50 mg. Life Extension brand, in caps. I periodically stop for a few weeks/months, which is wise to do with any hormones. DHEA is a precursor to testosterone/estrogen.
Posted by sfcharm (Member # 9392) on :
Thank you all for your replies. Am having muscles biopsied at Stanford in the next month or so.
Also found something on my thymus that they think could be causing all this.
Personally I think it's the lyme. It's an uphill battle.
Posted by bearlythere (Member # 31973) on :
My doctor said that Bartonella is the infection that causes muscle weakness. I have horrible weakness in my legs and arms...so scary.
Posted by lyme-o (Member # 35115) on :
What about your fingers? Are you still able to pick things up and button your clothing? Has that become an issue also?
Posted by sfcharm (Member # 9392) on :
I do not have AlS and have no problems with strength or buttoning of shirts.
No muscle weakness what so ever. I am at the gym five days a week, do weights, 30 minutes on elliptical.
I have no idea what's causing the muscle atrophy/loss. Maybe it's not even because of the lyme. I wonder if the antibiotics played a role in the muscle loss?? Who knows.
I think the Doctors are all stumped as well.
Hope the muscle biopsy will tell us something. I am going to ask the Dr. to have the pathologist test the muscle for lyme bacteria as well.
When I had my gallbladder out in 08 they tested it for lyme and it was negative.
Posted by 2young2dieMom (Member # 25434) on :
I have loss of strength and dexterity in my fingers. I have been tested for myco and bart, all negative. My only positive test has been Protomyxzoa.
i've never had a muscle biopsy. Let us know how it goes.
Posted by James H (Member # 6380) on :
I do not know your age or gender, but you might want to have your testosterone level checked. Really! (This is true for females too, just levels are much lower.)
Back in 2005 - 2006 our LLMD at the time noted that I had very low testosterone when doing the labs and tried to do something about it to make me feel better, but she had a fear of side effects. She scared me that if I used just a little too much I might turn into an angry wife beater or serial killer.
Such fears turn out to be baseless, but she scared me enough that I filled the prescription but did not use it. I am told now that it is actually Estrogen that causes the so-called 'roid Rage, LOL!
Years later I am in pretty decent health but my muscles seemed to be slowly going away, and exercise did not seem to make them stronger.
Then one day a light bulb came on and I remembered the abnormally low testosterone in the labs back in 2005 and started doing research. Bingo! Low testosterone causes that problem plus a bunch of others many of us have.
So, I dusted off a horribly outdated tube of compounded cream and started rubbing it on every day as prescribed. Huge difference! I had energy and felt like tackling big projects, and my muscles have been coming back and firming up. I feel years younger now that this is corrected.
Your LLMD can test you and prescribe something. Or you can go to one of those specialty clinics that are springing up in major cities if you do not have an LLMD and your PCP is not up to speed on such things. That is what I finally ended up doing.
Testosterone has been demonized by mainstream medicine, and there are many persistent myths in mainstream medicine just like there is with Lyme.
It is worth a try to see if that is your problem instead of something more sinister. Sometimes a bad problem turns out to be something simple!
(He is not an LLMD, he just works with hormones. The link is just because he has some good information.)
[ 11-05-2012, 10:46 PM: Message edited by: James H ]
Posted by cht girl (Member # 26170) on :
To all those following this thread, this is a very interesting article related to this topic: http://jnnp.bmj.com/content/63/2/257.full. Posted by sfcharm (Member # 9392) on :
What a great picture of atrophy of hands from lyme. My feet look very similar, complete loss of muscle.
Thanks so much for the post, just now viewing it after being away for two weeks.
Posted by Mathias (Member # 5298) on :
I had a CNS infection of mycoplasma fermentans which was diagnosed through a spinal tap and PCR.
My symptoms were very ALS like. Twitching, muscle wasting, weight loss, weakness, etc.
I had 2 separate EMG prior to the mycoplasma dx to rule in or rule out ALS. I was close to being dx'ed with ALS and if I was not eventually dx'ed with something else, ALS likely would have been what I ended up with by default.
Mycoplasma is poorly understood. I believe many ALS cases are misdiagnosed mycoplasma infections or Lyme infections.
My ALS symptoms were not due to Lyme in my case.
Hope this info helps...
Posted by koo (Member # 30462) on :
I had this as well. I am sure it was due to poor endocrine function....specifically adrenals. I also had scant HGH.
I did try DHEA, but I think it was aggressive ABX treatment that eventually righted this.
I can FINALLY tolerate exercise again.
I think before undergoing muscle biopsy I would try something simpler like a complete endocrine workup.
I think a lot of us with neuro lyme hit this bump in the road with mixed signals regarding endocrine function.
Posted by twicebitten (Member # 5412) on :
koo, when you say aggressive, you mean IV?
I have this "wasting" as my old doc used to call it. Primarily in legs, feet, ankles, but also now in hands/wrists area.
My shin bone is so sharp you could almost cut yourself on it. It feels like just bone and skin. There are depressions in the feet and ankles that just look like chunks of the muscle has been pulled out. I never got much comment or help from any docs.
My 1st llmd noticed it and said he wasn't sure what it was, or what to do. 2nd llmd said he couldn't see anything, just drink protein shake.
After that I knew better than to mention to a regular doc. I do believe I have mentioned it to a neuro or 2, without any comment from them back.
I heard someone on here once say to get some msm (I think it was) lotion. I did try that, but didn't notice any improvement. The one I got smells too..not that it would matter if it worked for me.
It always reminds me of people who are in wheelchairs and how their limbs look, scary stuff. But, at least you can understand that with them not able to use the limb. This is just weird.
Posted by LSG Scott (Member # 21624) on :
a pfo also known a hole in your heart could cause this to happen
Posted by bluelyme (Member # 47170) on :
Would pfo show up on echo? Does anybody know the solution to ending this? What is inf cause , bart /proto or Bb?
[ 02-16-2016, 08:26 PM: Message edited by: bluelyme ]
Posted by paleogal (Member # 45991) on :
I second that question - how do we end this? When were you able to put muscle back on?
I have atrophied everywhere (no more flat abs, nice arms, etc), but I also can't put muscle back on even when I try. Posted by Robin123 (Member # 9197) on :
PMing you -
Posted by bluelyme (Member # 47170) on :
Did you figure it out ...parasites?...dead bugs. Bugs softening us up to eat us better..all of the above?
Posted by LSG Scott (Member # 21624) on :
vit d3 level of 85 and sea salt protocol stopped all my muscle withering away stuff in its tracks, thank you Jesus, his grace is great just believe in it and receive it!
Posted by LSG Scott (Member # 21624) on :
vit d3 level of 85 and sea salt protocol stopped all my muscle withering away stuff in its tracks, thank you Jesus, his grace is great just believe in it and receive it!
Posted by bluelyme (Member # 47170) on :
Thank you lsg scott i will up vit d and treat parasites more aggressive
Posted by Pocono Lyme (Member # 5939) on :
I had muscle wasting from Babesia. I've also read about low testosterone and adrenal fatigue causing this. I'm female and now do testosterone cream in addition to being treated for adrenal exhaustion. It's made a huge difference for me. I see a bio-identical hormone replacement doctor for this.
Posted by bluelyme (Member # 47170) on :
I been have been using t cream ....it sure makes me moody....what are you doing for adrenal support? I have been under unreal stress for two years
Posted by Pocono Lyme (Member # 5939) on :
Natural adrenal products didn't help me at all. I think I was beyond the point of them helping.
I do Cortef at least four times/day at different doses.
Posted by Keebler (Member # 12673) on :
- Getting enough protein - eggs, muscle meat, fish (from good clean sources) - as well as some from legumes?
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . 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. . . ."
- 20 pages - Full article at link (or web search the title if it does not go through). -
Posted by Keebler (Member # 12673) on :
- Celiac, gluten issues? -
Posted by bluelyme (Member # 47170) on :
I am doing lots of protien, quit gluten years ago ,it is weird site specific wasting that is happening all over ..creating divots of where muscle used to be? that has happened in 6 months , kinda like mpa vasculitis, i think it might be bart. Er doc said disseminated cmv ...i said i dont have aids (that kind of wasting)and then i found lyme n co..anyone stop it other than dave martz and this guy http://www.lymeneteurope.org/forum/viewtopic.php?t=5777
Hands starting to look like http://jnnp.bmj.com/content/63/2/257.full. Got port ordered for march and was going to try to get some rifampin /mino at next appt with llmd. Its just a daymare i cant wake up from
Posted by tulips (Member # 44773) on :
Hi, I haven't read all of the other posts in response to your question, but yes, I've had muscle loss and loss of glutes and went down to 100 pounds. My normal weight is 130. My feet were useless, empty pods with almost all of the flesh gone from them.
I started drinking a bottle of Ensure Nutrition shake each day which reversed the flesh and muscle loss. But, you also have to go after the cause. On my symptom list, Lyme Borrelia causes unexplained weight loss or gain and Babesia causes muscle loss. The solution to the cause of the problem was either herbal or abx. I went on abx.
Then when I relapsed, I turned to Buhner's Core Protocol for Lyme and Co. On BuhnerHealingLyme, he gives, on page 1, the herbs and homeopathics to take for each disease along with the doses.
Posted by bluelyme (Member # 47170) on :
Thank you tulips...i got new edition of his book and will be adding a few more herbs to regime...
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