Muscle Atrophy - Healing98 please read!!

hey guys, well, I am currently training for the 5 borough bike tour which is a bikathon of about 40 miles from the city to staten island. I was hesitant to sign up with my husband, but he signed me up anyway. He said this would be a great break thru for me and accomplishment after beating lyme. As of today, I have no symptoms. The muscle twitching I did have is next to none. I still have leftover nerve damage in my right shoulder, and it is only aggravated when I overextend my arm or weight lift.

I was super excited until today - when I am realizing how close the date is, May 3rd - I am getting a little nervous. I just don't want to overdo it and mess myself up somehow. My Dr said it's a go, if I feel I can do it, so I think tomorrow will tell the tale because I am doing 20 miles (which is about 1/2 of the actual bikathon). But she said to be prepared to take a week or two break from exercise after the bike tour to let my body recover.

I got struck with the flu for 2 weeks, so I had to stop working out. I just worked out Wed - I lifted weights for 1/2 hr and ran on the treadmill for a 1/2hr. I was super tired yesterday and am ok today. But tomorrow my husband and I are going to do that 20 mile bike ride. I did an 11 mile bike ride last week with no problem. So I think and hope I will be ok.

I just am still trying to wrap my head around this muscle atrophy business. When I was super sick last year, I literally loss muscle - I mean I used to stand on my tippy toes and feel my calf muscles, I had nice biceps and triceps when I tensed my arm, etc. It all disappeared. And if people say that its from not using your muscles, I am having a hard time believing that because I still had to use them since I have 3 kids - I didn't stop what I was doing because I was sick, I was just in much more pain since I couldn't just sit around. Now, thank God, my calve muscles, thighs, biceps are back, still have to work on my triceps though! But it still all isn't what it used to be, so I have to work back up to It!

Healing98 - I read an old post from 2013 that you used to do marathons and such and now you can't and you look different. Do you know what exactly happened with your muscles? Did lyme actually break the muscle down? I am so sorry this did happen to you - have you made improvements since then? Bc you wrote that you can only do a 15 min walk. I was super lucky in that it didn't pull me that far back, but I am still so frustrated because I can now feel what damage lyme did to me - I used to exercise everyother day and bounce right back. Now I have to take at least 2 days off inbetween. Why???

Any thoughts and opinions would be sincerely appreciated, thanks!

And those of you who know me - I am SO SO sorry for not being on here more - when I was sick with the flu I was a mess, and then we went away, and then I had to put in a submission for that chronic illness movie Invisible, and before that I was helping out two people on LI with lyme - literally met with one of them and was texting both of them back and forth on a daily basis. So that ate up the time I would have been on here.

I am looking forward to some replies!! =)

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Hi Chapelle!
Yes, before Lyme I used to run 365 days a week. Not an easy task here in Chicago with its cold winters and sizzling summers. I would do charity 5k and 10k runs on weekends and the marathons here and there. I was also doing a lot of biking in between.

Something happened to me after the infection that when I do anything more than a slow-normal walk I get very weak, dizzy and feel like I am going to collapse. This also happens whenever I use any amount of strength such as trying to open a jar, carrying groceries, or running across the street.

I had a stress test done and my heart is fine. It almost feels like as if my body doesn't have enough sugar to feed my muscles and I go into a diabetic shock. however, I tested by blood glucose, blood pressure and heart rate when this happens and they are normal. MRI have not shown any inflammation and blood work has also been normal.

about my muscles, I had muscular legs, a rock solid gluteus maximus (per my wife) which filled my jeans quite nicely. but after Lyme, my muscles began to shrink and get soft. I had a test done where they ran electrical current through your muscles to check their condition and that was also normal. My muscles are also abnormally sensitive where if I get punched (birthday) or if it gets rubbed too hard it hurts like as if the muscle is being pulled away from the bone.

The strange thing is that as long as I walk slow-normal I can walk long distances. I have a pedometer app on my smartphone and I reach my daily walking goal of three miles a day without a problem. I was hoping that walking three miles a day would bring back some of that muscle or at least give me more strength but that has not been the case. Almost as if my muscles are being starved of something. It is not magnesium since I take magnesium malate every day. I eat lots chicken and eggs and vegetables and plenty of water (4-5 water bottles daily) so I doubt that it is my diet.

So, I unfortunately don't have an answer for you as to why it happens. I have a feeling that it might be due to a hormonal, cortisol or testosterone imbalance due to the adrenals or thyroid or perhaps to my blood cells not being able to carry enough oxygen due to my Bartonella infection. I have spoken to a number of Endocrinologists and they can't figure it out.

I am so delighted to hear of what you are up to. I also envy you because being out there with all the other bikers out there in the fresh air is so much fun. You feel so invigorated after a run and so full of energy. I hope to one day do it again.

I almost forgot... get the best gel bike shorts that you can afford. and use plenty of lubrication where the sun don't shine, otherwise you are going to be in lots of pain after the bikeathon

Post Edited (Healing98) : 4/18/2015 7:49:52 AM (GMT-6)

Chapelle, I have a knot in my throat and feel this emotion inside after reading your post. I am so excited and happy for you. This June will be three years that I got infected and I honestly am forgetting what my life was like before the infection.

In high school I ran track and cross country so later in life it was easy for me to take up running again. I also love bike riding. When my friends and I got our driving licenses, I would still ride my bike to my friends' houses even though I had a car because I love it that much. I remember going out with my friends on a 40 and sometimes 60 mile ride in some of the trails around Chicago. There is one, the I&M canal trail which I love and rode often. I think it was here where I was bitten. My dog and I used to ride and run here often. He could only do 6 miles before he gave up but he loved running with me alongside my bike. I had to put him down last year because he had Lyme as well and he could not beat it. It was devastating for me because I was sure that I was going to follow him since I was very sick too.

Your efforts to ride are encouraging for me because you have proven me that it can get better. Most of my symptoms are under control where I can work and live a somewhat normal life, except for when something traumatic happens or if I get scared. I get the same way that I do when I try to work out or do something strenuous. I hope to one day find a doctor who can figure out what is going on and can treat me.

As far as your ears, I used to wear a bandana/kerchief around my head before I put on my helmet. I have long hair and when I took my bike helmet off I would have "crazy hair" (that's what my grand daughter calls it) so the bandana kept my hair from looking crazy. It also helps keep your ears warm without making them too sweaty so you may want to try that.

Well, I so glad that your husband is so understanding so don't give up!

I supplement with creatine monohydrate and feel that helps quite a bit. I too have muscle atrophy and like most, can not figure it out. Before I tested positive for lyme, my "perfect" bloodwork was high in creatine kinease and doctors asked if I exercised or was active. Which at the time I was, so that was why, they said. Little did I know at that time, there was more to this. I used to use it back in the 90's, with good results, so recently started using it again. Quicker recovery, less soreness, believe it is helping quite a bit.

happyjo said...
GH~U no longer use weights then? And what can you do to help from feeling muscleain & damage? Also, if you subscribe to Protozoa, it is said staying away from fat (animal, in particular), is the way to go. I agree with you & your Paleo comments!

Just a few exercises & long walk yesterday, & by evening (awfully quick!!), it was as if my body had been on a Himalyan trek!

Wondering how Chapelle is doing?

I've started doing light exercises with resistance bands. I herx pretty good too. The protozoans can live anywhere but they seem to only survive my immune assault in the synovum and in biofilms. I'm doing light weight and low rep, just functional movements with resistance. Limiting fats does help but if you limit fats and limit protein, there isn't much left to eat. I have SOD2 mutations so carbs are an issue too.

I can't believe you all can work out. I can barely climb the stairs in my house or even hold a pen in my hand. Gosh.....I'm even worse that I thought. Depressing.

sorry I was MIA for a while there guys....

Healing98 - I got a knot in my throat reading your response!! Gosh, yes, it can get better, you have to believe it can - you just need the right tools and the right protocol to get there, and you will !!! Hear that Utagal - don't think that way, it was my positive attitude and ambition that got me to where I am. Of course I cried my eyes out several times a day when I was first sick and didn't think I would ever be the same again, but I didn't let lyme get the best of me. I sure as heck will never be the same again - and I came out an even stronger person on the inside because of it, and I intend to work towards becoming even stronger on the outside too!

And yes, healing98 - I purchased a neoprene headband that covers my ears, worked wonders! Did 25 miles with hubby yesterday with complete success! it took us 1.5 hrs. I have no idea if that is fast or slow, but I did it! My mom is worried about me next week - she doesn't want me to pull a muscle or for my heart to race too fast (I just always had a rapid HR even before lyme, still clueless as to why - no Dr has figured it out). I know how to pace myself, like yesterday, if it gets too fast, I just slow down to let my HR slow down - this is not a race. I even told my husband to go ahead of me, but he doesn't want to =) Wish me luck guys!! it is this sunday!! I will post a pic - if I can figure out how to LOL

Yes Georgia is extremely knowledgeable, we are the two pharmacists on here! Thanks Georgia, appreciated your response and all of the info as always!

there is more to this story, I am starting a new thread, but after my first bike ride, I discovered I got bit by a dog tick - not kidding! read the new thread if you are interested! LOL I am going to write it now.