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Posted 2/27/2012 4:31 PM (GMT 0)

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

Posted 2/27/2012 8:16 PM (GMT 0)
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.
Posted 2/27/2012 8:38 PM (GMT 0)
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 purebulk.com; its pretty cheap as i do not think eating 6-7 bananas-potatoes is a good idea
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Posted 2/27/2012 11:45 PM (GMT 0)
Puzit,

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.
Posted 2/28/2012 1:41 PM (GMT 0)
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.   Thanks
Posted 2/28/2012 2:23 PM (GMT 0)
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:

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

IGG
**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!
Posted 2/28/2012 2:51 PM (GMT 0)

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!

Posted 2/28/2012 3:05 PM (GMT 0)
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: http://www.hulu.com/watch/268761/under-our-skin

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.

SICKNESS IS A VERY LONELY PLACE TO BE BUT YOU ARE NOT ALONE, EVER!

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

Posted 2/28/2012 10:11 PM (GMT 0)
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
Posted 10/16/2013 8:18 PM (GMT 0)
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.

Thanks,

God Bless.
Posted 10/17/2013 2:05 AM (GMT 0)
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.
Posted 10/17/2013 3:19 PM (GMT 0)
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.
Posted 10/30/2013 3:23 PM (GMT 0)
What are you all doing for treatment? Herbals abx?
Posted 8/27/2016 1:41 PM (GMT 0)
Hello everyone,
This forum is helpful to read. I was diagnosed with ALS 3 months ago after muscle twitches spread through my body and my left arm and hand progressively weakened. This of course was devastating--I'm 35, just got married, just bought a house. We found out last month that it is chronic Lyme disease, through Igenix (and CDC criteria), in addition to autonomic response testing.

I've started a variety of treatments, including herbs to kill parasites in my kidneys, a homeopathic antiviral, and Cumanda bark extract for the Lyme. I'm also on drainage remedies to support my lymph and organs.

So far some very mild herxing, yet I'm still quite concerned about the neurological symptoms, especially in my hand. I've lost a lot of function--typing is slow, can't open containers or get dressed quickly, and if I was in any kind of profession that required my left hand, I'd be disabled.

My first LLMD (who I don't like or trust much) thought I need to do IV antibiotics, but my research says it could make things worse in the long run.

Anyone find anything that works for restoring neurological functioning, especially nerve repair?

And please, no fear-mongering or unskillful and critical comments--they aren't so helpful right now. I thrive on hope and inspiration. :) I welcome dialogue with those of you in a similar situation.

Thanks!
Posted 8/27/2016 3:38 PM (GMT 0)
Welcome to our community, Towanda707

Before I was diagnosed with Lyme, I had muscle twitches throughout my body, and weakness - worst on my upper left side.
A neurologist ruled out ALS and MS (physical exam, along with brain MRI)

Lyme diagnosis must have been a relief for you!

For me, treatment and physiotherapy (I developed frozen shoulder and muscle atrophy) - has what's helped me the most - for strength and function.
I still have bad nerve pain.

I have added some recommended Buhner tinctures for the nerves - Greater Celandine and Kudzu.
(From Woodland Essence)
I also have restarted my Alpha Lipoic Acid - which is good for nerve repair, as well.
I take B Complex, and extra B12.

So far, not noticing a huge difference in pain...but my tremors in my left hand are gone...this has slowly gotten better...so not sure what I can attribute it to - it was getting better prior to adding the Kudzu and Greater Celandine.

Since you are new here, it would be helpful for you to read through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Question: Are you detoxing daily?

This forum is a great support system - lots of knowledge, great place to ask questions...or just come to vent.
Posted 8/27/2016 4:10 PM (GMT 0)
Welcome to our forum Towanda! We are glad that you have found us. This is such a great place to get your questions answered or just to have some one share in the journey that understands.

One of my worst symptoms has been the nerve damage. It has affected my arms, my left leg and foot, my vision and mind.

I have been doing Buhner's Core protocol as well as additional herbs for specific symptoms. I can't really tell you which ones are helping, because I think they work synergistically. What I have been using I have gotten from his "Healing Lyme" latest addition.

I am having good results! The nerve pain in my arms is almost gone. And I used to have this such pain in my feet. It isn't gone but definitely better. I still have a long way to go, but I am very hopeful.

Good for you for doing your research. You are being proactive and with your mindset you will find the answers you need.
Posted 8/27/2016 7:13 PM (GMT 0)
Hi everyone,

Sorry you are all going through so much. I also used to be muscular, fit, strong. Now I'm just thin and can barely lift a 3 lb. weight. Since fibromyalgia four years ago (which LLMD now thinks was/is LYME) exercise sets me back. Walking, biking, hiking are ok. Until I was bit July 4th weekend - now I'm healing. I read on this board that we lose a lot of collagen with Lyme so I'm taking (also learned from this board) a collagen powder. It is called: Peptan Hydrolyzed Collagen Protein Powder. For joint pain relief, skin, hair, nails, building muscle bone Density and osteopenia. The brand is Protein Essential. I make organic bone broth soup (also full of collagen) and put the powder in after I pour the soup in a bowl - you can't even taste it. If you don't have time to make bone broth you can buy it at most health food stores. I order the powder on Amazon. Which I could give attribution to the lyme angel who told us about it. Can't say if it is working yet because I just started it last week but I don't see how it can hurt.
Posted 8/27/2016 8:00 PM (GMT 0)
Huddie-

Keep us posted on the Peptan Hydrolyzed Collagen Protein Powder.

I realize it will take a few months to tell anything.


Towanda707 - I WAS a wreck for years. My hand "shocks" are gone now (fingers crossed, no pun intended). Can sleep again.

I am limited in typing and guitar picking, but I can do it. Still drop things, but way less. Worse in morning. Never had good typing finger motor skills, guess I never will. But even two finger typing hurt before. Now I can use two fingers and thumbs LOL, but I cant have a job which requires rigorous typing skills. Had to quite a job that required a lot of mouse and key work. It bored me to death anyway.
Posted 8/27/2016 8:18 PM (GMT 0)
I have watched with confused dismay of my muscles wasting away over the years. Probably 10 years or so. My 35 year old daughter has experienced the same thing, in spite of our decades of carrying hay bales and feed sacks (50# ea.). 'Wrestling' around horses and saddles and everything else that goes with maintaining a country minifarm. In addition she's had jobs that required lifting of human patients and animals on such a regular basis it should have counted for resistance workouts. Instead of getting stronger we have both gotten considerably weaker.
Posted 8/27/2016 8:27 PM (GMT 0)
AM - Fingers crossed - LOL. Is it bad that I like lyme dark humor?
Posted 8/27/2016 8:43 PM (GMT 0)
Huddie- No,

normal in my book.

Seriousness kills people.
Posted 10/19/2017 7:04 PM (GMT 0)
When I do too much my quads start to burn and feel weak. I started having symptoms in June and was diagnosed in Aug and started on IV Rocephin within a week. I've been on it since and I've seen major improvements except this. I can't drive because when I push too hard, my muscles feel like I have 30# weights on them and I literally find it extraordinarily hard to move. It'll take me down for a day. Any solutions??
Posted 10/19/2017 7:45 PM (GMT 0)

Tsak11 said...
When I do too much my quads start to burn and feel weak. I started having symptoms in June and was diagnosed in Aug and started on IV Rocephin within a week. I've been on it since and I've seen major improvements except this. I can't drive because when I push too hard, my muscles feel like I have 30# weights on them and I literally find it extraordinarily hard to move. It'll take me down for a day. Any solutions??

we are trying a new protocol over here

https://www.healingwell.com/community/default.aspx?f=30&m=3928795
Posted 10/19/2017 9:26 PM (GMT 0)

Lapis_29 said...

Tsak11 said...
When I do too much my quads start to burn and feel weak. I started having symptoms in June and was diagnosed in Aug and started on IV Rocephin within a week. I've been on it since and I've seen major improvements except this. I can't drive because when I push too hard, my muscles feel like I have 30# weights on them and I literally find it extraordinarily hard to move. It'll take me down for a day. Any solutions??

we are trying a new protocol over here

https://www.healingwell.com/community/default.aspx?f=30&m=3928795

Some great scientific evidence that is to the point and makes sense. It should in theory help.

It gets right to the reason why it's probably happening and what to DIRECTLY do about it.
Posted 2/10/2019 12:03 PM (GMT 0)
I have tremors and weakness in my right arm and leg; also no mention of MS or ALS band 41 and partial band 39 positive; also Ebv and herpes 6.
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