posted
I'm starting to wonder if I have something else going on besides lyme.
I have always dealt with more muscle issues than joint. Currently I have had no joint issues in a couple of months, or more. My muscle weakness use to rollercoaster, was more on my left side, my right side would be more spasmodic.
But, lately I feel as if my whole body is weak. That it is all weighed down. Even pushing a grocery cart has proved difficult. I even feel the heaviness on my lungs while simply sitting doing nothing. Or keeping my head up off the chair while typing this... I am having to lean it back quite often.
I had used a muscle relaxer on occasion for a few days this last week at a low dosage, and even lowered it. And have totally stopped now. I'm thinking that it increased the muscle weakness.
But the weakness has continued. The heat and humidity is finally down some in our area. But, when we were in the 90's with high humidity, and I had to drive so I was out in it for an hour I was totally exhausted and barely able to get out of the car. Just parked it at my moms, turned off the engine opened the door and sat there.
I was tested for myasthenia Gravis initially (test for antibodies i think) and it was negative, a yr and a half ago. But, they didn't do any of the other testing they could have. I am wondering if I should be tested again.
I do show signs of eye drooping when I'm really tired or sick.
But, I also have muscle ticks throughout my body which i don't think MG has.
Is whole body weakness a symptom of a co-infection that I don't know about??
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Hi Laura. Boy can I relate to what you posted. I feel like my limbs are too heavy to lift up or to walk at times, and I also feel tremendous weakness.
I also get the muscle twitches that you described throughout my body. I can tell you that I have positive tests for lyme, babs, ehrichlia, mycoplasma, toxo, epstein barr, ana, parvovirus b19 and c pn and HHV6.
My dr (who I am soon leaving) is stumped as to what coinfection may be causing it in my particular case, but he did say that it is definitively from tick borne illness. I did have extensive neuro testing however. Have you ever had an EMG or an MRI or SPECT scan?
I hope you feel better soon. Sorry I couldn't be of more help, I just want you to know that you are absolutely not alone with this. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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I also feel that way, especially when it is exceptionally hot or humid. Although yours sounds a bit more debilitating than mine.
I don't have any diagnostic reason to believe it, but I had thought it was the Babesia causing it. I've found that epsom salt/peroxide/ginger baths seem to help a bit with it. Maybe it is the magnesium?
Nothing definitive or entirely informative from me, unfortunately. Just a *raise hand* and say me too.
I'm being treated for lyme, babesia, bartonella, mycoplasma. Maybe this will help you uncover something?
Posts: 274 | From United States | Registered: Feb 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My primary symptom for the 10 years I went undiagnosed was extreme muscle weakness. It was all muscles of the body.
I could not hold my mouth open to have my teeth cleaned without my jaw muscles getting exhausted. I could not hold the phone to my head for more than 30 seconds due to arm weakness. I could not stand for more than a minute or two. I dreaded rising up from a chair or stepping up a curb.
When I got good lyme treatment, this symptom finally went away. It did not go away with 2 years of lousy lyme treatment.
Besides the lyme treatment, I had to do the Burrascano exercise program which meant one continuous hour of weight lifting every other day--a full body workout.
Can you imagine how I felt when my lyme doc told me that I would never get well unless I did this? Might as well tell me to climb Mt. Everest.
It took me about 3 months of trying before I was able to lift very light weights for an hour. I switched off from arms for a few minutes to legs for a few minutes, then back to arms, etc. to get through the entire hour.
It took months of this before my muscle weakness finally went away.
All told, I had this terrible symptom for at least 12 years. But, I got rid of it and all other lyme and coinfection symptoms over 7 years ago now.
I advise lyme patients to hold off on going to specialists and being tested for other illnesses until they are finished with their lyme and coinfection treatment. These illnesses are "the second great imitator," (with syphilis being named the first great imitator) meaning that they imitate many, many other illnesses.
YOu can spend an awful lot of money and a lot of time going to specialists to be checked out for MS, Parkinson's, ALS, Alzheimer's and every other neurological, etc. disease you can name and come up with nothing.
In fact, that is par for the course for a lyme patient because these illnesses attack the nervous system and can attack any other bodily system--digestive, gynecological, respiratory, joints, etc. Before my diagnosis, I had seen many specialists and had many tests. None of them showed anything. So, just know that this is the typical history of a lyme patient.
Treat the lyme and cos and if anything is left after that (and usually there won't be ANY symptoms left), then you can go to a specialist. That is the most logical approach to this disease since it can imitate every illness known to man practically.
You will see "obvious muscle weakness" listed as a lyme symptom on page 9 of Burrascano. So, I think that takes care of it. You can stop worrying.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I see my lyme dr tomorrow. He is not lyme literate, just lyme friendly. I havent been tested for any co-infections. And he is not knowledgable about them. We have talked about him consulting with the best LLMD here in the state, as that LLMD is willing to consult. I think it is time.
I just found it weird that my muscle weakness had changed I suppose. Because it became whole body, instead of just parts of the body at a time. And it just had me thinking back to before I was diagnosed with lyme. And all of those tests..... MS, ALS, MG, Pseudo tumor cerebri..... etc.
I have been on cipro for about 2 1/2 months now. Not sure if I should be continuing it or not.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
chastain.... I had an EMG done before I had the official diagnosis of lyme. When the numbness weakness, tingles etc had just began. The EMG was normal. I doubt a yr later that the results would be the same.
I have had a couple of brain MRI's. Last one was done 9 plus months ago. They were normal. I have my eyes checked, dialated at least 4 times a year. Eyes are normal... Optic discs are abnormal. slightly elevated or swollen.
I haven't had a spect scan done.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
TF - I am looking online for Dr Burrascano's exercise program.Is it posted anywhere? Thanks
Posts: 305 | From United States | Registered: Nov 2011
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posted
I have the muscle weakness too. It comes and goes. It is primarily my arms and it used to be neck. My neck has gotten better, but my arms still give me problems. I also had right leg weakness. It seems better.
My ongoing arm issues really worry me. My weakness is not a flu-type exhaustion weakness. It is a neurological type weakness where i feel like if I'm holding a glass in my hands, it may just slip out. Or that I'm just slowly being paralyzed and cannot hold my arms up or pick up a camera to take pictures of the kids, hold the steering wheel type weakness.
It is an awful symptom. That, along with my balance issues. Both really scare me and I have tought numerous times it could be ALS, but I'm only 35 and was 30 when I got sick.
I have positive babesia and Lyme tests, borderline positive bartonella.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I saw my dr today. He didn't seem overly concerned. He did order another muscle wasting blood test... In the past they have all come back normal. We are also checking my overall glucose level as it has been a year since I have had that done (it was normal then but I do suffer from low blood sugar)
I found myself having to use my inhaler tonight so that I was able to talk with my friend on the phone. And less than 3 hours later I would like to use it again, but its not time. I am not asthmatic.
But, my lungs do feel heavy. My throat feels swollen. It takes effort to chew my food, and I find myself not eating, or stopping eating because of the effort it takes. However, swollowing is not an issue just the chewing.
I'll call my dr tomorrow for the blood results, and go from there. The heavyness seems to have come and go throughout the day today. More noticeable in my arms, neck, and lungs than my legs.... Although maybe that was because I was in the passenger seat of a vehicle most of the day?
I'm trying to give this some time to see what happens, to see if it rollercoasters like the rest of my symptoms or if it stays, and needs to be readily addressed.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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gmb
Unregistered
posted
you really should treat Babs for a minimum of 4 to 5 months
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