Muscle wasting

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New Member

Date Joined Feb 2012
Total Posts : 9
   Posted 2/27/2012 11:31 AM (GMT -6)   

Can anyone tell me if they have any muscle wasting from Lyme i.e. throat, neck or hands? I’ve posted previously my other symptoms if you would like to read those as well before responding.


Thank you

Veteran Member

Date Joined Jun 2011
Total Posts : 898
   Posted 2/27/2012 3:16 PM (GMT -6)   
I have never heard of this...Lyme does attack the interstitial space in the body and gobbles up collagen according to my LLMD...but this reverses with treatment. Muscle atrophy might occur if one doesn't keep up some form of exercise while undergoing treatment, however.

Regular Member

Date Joined Feb 2012
Total Posts : 253
   Posted 2/27/2012 3:38 PM (GMT -6)   
i have had detox periods where i will literally lose 10-15 pounds in detoxing..then slowly gain it back. I think its the body detoxing as any times when this happens, what follows is a few weeks where i have little appetite, so body seems to be saying hold on we do not want an abundance of food right now as we are detoxing and rebuilding

I have heard the bugs like collagen as well as per yazzer

Potassium or protein with good cholesterol might help if you are at the appetite stage.coconut oil is a good cholesterol and has many anti-microbial -benefits but suggest an organic brand. I eat a lot of cashew butter
which is a protein but some nuts increase yeast

lack of potassium is said to be a part of this-muscle wasting and you need proper levels of magesium to be able to absorb potassium

the RDA for potassium is close to 5 Grams, which none of us get and the otehr problem is, most potassium is in high sugar fruits and veggies-bananas-potatoes and we would have to eat about 7-10 of these to get our RDA

potassium helps in gut peristaltis, moving the intestinal muscles so for me , i believe played a role in constipation
however, the cellular balance must be maintained of I believe it is 16:1 potassium to sodium, so seaa salt drinks sprinkled with potassium chloride-nu salt substitute can help

I order potassium chloride in bulk from; its pretty cheap as i do not think eating 6-7 bananas-potatoes is a good idea
Bartonella just started treating, severe burning in legs; hands getting numb; eyes filmy and strained, diminished sight, significant neuro-cognitive problems.
living streams (Derma, Probiotics & Flora PM which i believe eliminated liver flukes) Did 5-6 MagVIt C IV's and this seems to have healed gut but created major detox) Rifing-perl, lactoferrrin-big gut neuro herx , valtrex 4 ebv to raise WBC

Regular Member

Date Joined Jun 2011
Total Posts : 52
   Posted 2/27/2012 6:45 PM (GMT -6)   

Yes, I have ALS symptoms and muscle wasting. I have lost the use of my left side. I have foot drop on the left foot and my left leg just drags along when I walk. My left arm and hand are very weak and I have a lot of muscle atrophy.

I too had clean emg's and normal nerve conduction studies. I have had physical symptoms since 2005.

I did have oligoclonal bands in my spinal fluid but no lesions on my MRI. I was told no ALS and no MS.

After looking on the Internet, I had my doctor draw my blood and had it sent to IGENEX to test for Lyme. I did not spend the money to test for co-infections because I was sure it was not Lyme.

It turned out I had several significant bands for Lyme. I was IGENEX positive but CDC negative. I found an LLMD and have been in treatment with various antibiotics since July 2011.

I have not made many Gaines though. My foot pain has been significantly reduced but my atrophy remaines as well as my weakness. I do feel weaker when I go off antibiotics. I have stopped briefly twice to treat yeast infections.

I recently had my CD57 nk test done through IGENEX and it came back as a 15.

I have an appt. tomorrow with my LLMD and am going to ask about weight bearing exercise. I don't know if my immune system is too weak to handle excersise.

Anyhoo, you are not alone with the atrophy. Mine is noticeable and real.

New Member

Date Joined Feb 2012
Total Posts : 9
   Posted 2/28/2012 8:41 AM (GMT -6)   

I’m so sorry to hear you are dealing with the same issues…please don’t take this wrong but I’m relieved to find I’m not alone. My doctors looks at me like I’m crazy, I truly believe they think I’m in need I’m mental help. Yesterday I saw an ALS specialist @ GWH in DC and she said she didn’t think I had Lyme because it didn’t show up 3 years ago in a spinal tap…my symptoms started 07 and I have progressively gotten worst. I can’t take any antibiotics as I’m allergic to ALL and I don’t mean they just make me sick. Mine also affects my life side more than my right, I have muscle weakness, atrophy, twitching, sometimes I feel this vibrations in my body, I had a bells palsy on the left side of my face at least that is what they are calling it, that is most noticeable to me, serious throat issues and shortness of breath…I go for another EMG and Nerve conduction study tomorrow with the ALS doctor. Obviously I want it to be clean and good…but very frustrated no one can tell me what is wrong, I have a list of LLMD in my area…I think it’s time to call and get an appointment and see if I can’t help myself.


Can you tell me do you see improvement with your muscle weakness, I know you said it’s better when you’re on your meds but do you notice if you are regaining strength in any of those areas that have lose muscle?


I too have been told no ALS, MS or MG.


Please let me know how your appointment goes I’m really interested in what your doctor says about you returning to some form of weight bearing exercise.



Regular Member

Date Joined Jun 2011
Total Posts : 52
   Posted 2/28/2012 9:23 AM (GMT -6)   
Believe me, I understand your relief. I have a 10 year old and a twelve year old so being undiagnosed is/was terrifying to say the least.

I had three ELISA tests done and they were all negative. I had a spinal tap and that was negative as well. I never imagined I may have Lyme disease.

Here are my IGENEX results:

18 kDa +
**31 kDa IND
**39 kDa IND
**41 kDa ++
45 kDa +
58 kDa +
**83-93 kDa ++

**31 kDa IND
**39 kDa IND
**41 kDa +

My cd57 test is a 15. (Indicative of chronic Lyme)

I grew up in Silver Spring, Maryland and lived by the Northwest Branch of the Potomac River. I spent many years hiking, biking, and camping around Great Falls, VA, Harper's Ferry, Sugarloaf Mt., etc. I believe I was infected over twenty years ago when I lived there. I live in Michigan now.

The only thing that pointed me to an LLMD and IGENEX was Googling stuff on the Internet. I was told by my primary Doctor to stop looking for answers and that I probably had MS.

Do not stop looking for answers. Find a reputable Doctor and have some testing done. Spend the money. If I die from this, at least I have some answers and feel 1000 times better knowing what is eating me away. Plus the fact there is a chance of recovery.

Rent the movie, "Under Our Skin" and watch it. There is a patient in the movie that has speech and swallowing issues that were resolved by long term antibiotics.

I too could never find anyone with my exact symptoms but we are like snowflakes and no two cases are the same.

Unfortunately you will have to fight for your own health with Lyme but with a good LLMD and a good support system, you can do this!

New Member

Date Joined Feb 2012
Total Posts : 9
   Posted 2/28/2012 9:51 AM (GMT -6)   

I am defiantly going to look into this, I was born in New Jersey but grew up here in Northern VA…I think I know I was bit 8-9 years ago I found a tick on me 24 hrs after being out in the woods…and we believe I was possibly infected again last spring, since I can’t take antibiotics my PCP has not treated me.  I’m scared to death, I also have two girls 13 and 15 and I stress daily about what is going to happen to me. I cried Lyme 3 years ago and no one would hear me out, maybe I wouldn’t be so bad off today?! But who knows. I do know that I’ve been told over and over again it’s none of the classic nuero muscular diseases it mimics. 


Can my PCP doctor order those test prior to seeing a LLMD doctor? I know it take a while to get in to see one.


I’m going to check out that movie for sure.


You are the closes case to mine I have seen/heard of yet…super happy you responded, I finally have hope that as answer is out there for me.


You say if you die from this, does your LLMD give you reason to think that this will not be managed or treatable to live as close to a normal life for a good long time? I thought and maybe my search is not correct…I thought this disease was treatable and I haven’t heard of any deaths from it.


I haven't been able to exercise in years as if makes it worst do you expierence anything like this?


I so agree though, if you don’t stand up and fight for your life who will!

Regular Member

Date Joined Jun 2011
Total Posts : 52
   Posted 2/28/2012 10:05 AM (GMT -6)   
Yes, exercise makes me go downhill. Not everyone but it does for me.

Yes, people do die from lyme but I do not plan on it. I was just emphasizing the happiness of finding answers.

I have not gotten better on antibiotics but I have not gotten worse.

My LLMD thinks yes. He claims he has seen miraculous discoveries.

I am off now on my two hour drive to see my LLMD.

Watch the movie, it will clear a lot of things up. Here is the link to watch it for free:

Regular doctors don't know crap about Lyme disease.

I have also joined another forum: MDJunction - Lyme. I have found good advice there too. You will have to wade through some nonsense as on any internet forum but it is all we have.

Read some positive stories, it will help.

Be patient, this will be a long road. If you have Lyme, you will most likely get worse before you get better.

Remain hopeful, you are a parent and need to stay strong. Set things aside and take the time to heal. This is important.

My e-mail is available on this board if it helps. Just click on my profile name.


Post Edited (Wiseguy) : 2/28/2012 8:10:15 AM (GMT-7)

Regular Member

Date Joined Jan 2012
Total Posts : 371
   Posted 2/28/2012 5:11 PM (GMT -6)   
Sigh-- i also feel like crapola after exercising. I also have VERY limited use of my hands as far as lifting any kind of weight with them or holding small delicate objects--forget it! I dunno if that's considered muscle wasting, but I am in bad shape. I tried lifting a 2 pound weight at the store yesterday and it felt like 50 pounds to me. My husband probably thinks I'm exaggerating I'm sure. I have my 1st LLMD appointment Thursday !! Thanks to a lovely member of this forums referral. I suspect I was bitten as a child (I'm 30) and again about 4 years ago. I got REAL sick and went for blood work and came back positive for Lyme. I was told 1 month of doxi would "cure" me. Um.. no. I got sicker and was told I just had fibromyalgia or chronic depression. I am so mad at all these drs I trusted. I only know about chronic Lyme because my husband had a client come in and they were talking about me and how sick I was. Turns out she and 11 ppl in her family got Lyme at once. There were books and movies made about her & her family. Shes a brilliant lady. She told my husband sounds like Lyme and he said as a matter of fact she (me) tested positive for Lyme 4 years ago. She told him to get me to an LLMD asap. Thank god for my husband speaking about me to clients (he works in financial) and thank god for her!!!

Soo.. It sucks. Our trusted physicians are illiterate baboons
Formally diagnosed with Lyme 07/08, only treated with 1 round abx doxi. Never got better only worse. Waiting for my first LLMD appt in March '12.

Symptoms: Extreme fatigue, severe constipation, severe joint pain, severe neuro symptoms, severe anxiety, chest pains, RLS, IBS, suspected name it..I probably have it LOL.

New Member

Date Joined Oct 2013
Total Posts : 11
   Posted 10/16/2013 3:18 PM (GMT -6)   
Hello Puzit et all,

I just found this thread and wanted to see how you all are responding to treatment. I have the same thing - localized wasting. It started in my face almost 2 years ago, and now it has moved to my hands and forarms. they are dreadfully thin, you can see all tendons and veins. It looks to me to be subcutaneous fat loss rather than muscle. Did any of you find treatment for this? what did you choose? have your symptoms improved? I am quite concerned at this point. I am a mom of 2 small boys, mid 30's. If I accidentally hit my arm it kills as there is no cushion left on it. I would love to hear from you all on what is working for you. I was just diagnosed last week and still looking for someone to treat me. I am in western Canada but pretty much willing to travel anywhere.


God Bless.

Veteran Member

Date Joined Jul 2013
Total Posts : 1195
   Posted 10/16/2013 9:05 PM (GMT -6)   
Hi everyone. I too have had muscle wasting. Just looking at pictures of me from a year ago and today you cannot tell it is the same person. I used to run marathons before, would go on 60 mile bike rides and would work out for two hours straight. Today, I too fall apart if I lift something heavy or do strenuous work such as pushing the lawn mower. However, I am able to do for a 15 minute walk (slow) and feel OK.

My doctor did find via my blood tests that the Lyme had affected my testosterone levels where now they are very, very low. On top of that I have low vitamin D and suffer from hypothyroidism.

My doctor believes that the low testosterone and the hypothyroidism are secondary due to the trauma to my hypothalamus by the Lyme infection. He has recommended testosterone supplements so that I can begin gaining muscle back, strength and my energy. I am holding off on it because some people have gotten better on the above ailments after taking abx. I hope to be one of those soon.

Veteran Member

Date Joined Jan 2013
Total Posts : 1134
   Posted 10/17/2013 10:19 AM (GMT -6)   
My muscle mass is pretty much gone but that is because I lost 25-30 pounds due to Lyme. Once I can start working out the way I used too (I can't do it yet) I know it will return. It's disturbing I know :-( I have so many clothes I can't fit any more and I used to work at Ann Taylor LOFT so 3/4 of my wardrobe is nice and staring at me in the face!

It will come back to you...I'm determined to get if not all of my weight then most of it.

Healing98 I'm with you too. I hung my marathon medals on my wall and looked at pics from just last year! Geez what a difference! But looking at my medals daily reminds me that I will get better and run more.
"Hope is that stubborn thing inside us that insists, despite all evidence to the contrary, that something better awaits us."

And that something is total healing for all!

New Member

Date Joined Oct 2013
Total Posts : 11
   Posted 10/30/2013 10:23 AM (GMT -6)   
What are you all doing for treatment? Herbals abx?
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