posted
Hello everyone. It has been about 2 months since Dx. I took one month treatment of Abx and as of now only on Lyrica and a muscle relaxer.
The thing that upsets me is that I am starting to feel normal again however the past few weeks anytime I exercise, when I finish. I start having massive muscle spasms all over my body.
In particular my face, neck, and abdomen. Obviously I did not work these muscles out so I know it is not muscle strain.
I also was diagnosed with benign fasciculation syndrome too. However I really feel it is progressing Neuromyotonia. The reason I say that is because with classic cased of NMT a person develops spasms and stiffness after exercise and become intolerant to exercise. This is exactly what is happening to me.
The EMG showed some involuntary firing when at rest so I am guessing this Lyme disease as wiped out my nervous system. I am so tired of this.
I have gained weight too which I am "trying" to correct with exercise but I am correcting with diet. I just feel my whole life has been ripped apart.
I stopped going to doctors, I am sick of getting the run around saying its in my head. I am dreams every night. I no longer have night sweats as of now but I have the wildest dreams.
I am surprised the Lyrica makes me feel as if I am normal again. They want me to take a higher dose but I do not wish to do so as for the low dose helps while the high one makes me feel drugged.
I have gotten to the point where I am ready to say whatever happens to me happens. I give up on trying to do anything anymore. I try to be strong but when your health is ripped away, it is heart breaking.
The thing the so called docs do not realize is that .. you all know this but I am saying it anyways... Lyme disease creates multiple diseases if untreated and mine went untreated about 3ish years now.
I work as a chemist and I know being around the chemicals does not help however I noticed that there is a decline in cognition as well. Easy things to remember are not so easy.
I know it sounds dumb but I will say things like " Go put that in that thing over there and I will point." It comes and goes. I can still do math well however recalling words and peoples names sometimes takes time. There is a delay.
The MRI came back "normal" as they say however I am no radiologist so I have no idea what I am looking at when I scan through it.
I am trying to stay strong however OMG, I just wanna throw something sometimes. I am turning to all natural medicine to help resolve this. The Doxy made me gain weight surprisingly. I gained at least 10 real fat pounds.
I appreciate those of you who take the time to read this and respond. I just need someone to listen. I no longer discuss this with people around me because I can see it in their face they get tired of hearing it.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
I appreciate that. I know what you mean. The Lyrica helps with pain. Helps with the depression for sure.
For me my muscles does something strange. If I turn my head left or right it will start shaking. If I lift a dumbell and do an arm curl I can contract fine, when I go to let it down my arm starts wrenching downwards.
The doctors never seem to get it. To them they say its normal, to me it is not. One day wake up and your muscles are not the same as the day before. I know my body well.
However it is normal to feel as we all do on this site. This is hell and it is ****ty that we have to endure this.
I notice I try to find things to blame for why I feel terrible. But the only thing to do is give up trying to blame and just move on. But each time I feel that quiver, weakness, facial tension or even mild paralysis the thoughts come rushing back and the anger does too.
You know what gets me is people at work think it is something like a cold... take something and it will go away. In come cases yeah but for me, the damage is done. It is possible the Lyme causing bacteria has been destroyed but my nervous system is damaged badly.
Sometimes I have tingling in my legs and arms. I have for certain peripheral hyperexcitability with my nerves. Anyways. I will be here tomorrow. I am tired. Had a good night everyone.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Aneg, do you have an LLMD? I don't know your backstory but for many, many people one month of abx is NOT enough.
You're not going crazy! It just sounds like you still have Lyme. There ARE doctors who will listen to you - they are few and far between but they are there.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Yeah I know of some however most want like 500 dollars to see them and I simply do not have that kind of money laying around. So I am having to do what I can to manage and I am having more blood work done which my insurance will pay for.
I am using pure supplements I get and hoping they help. Especially glutamine since my muscles are weak.
-------------------- Life is short, live it without regrets. Posts: 33 | From DFW | Registered: Sep 2015
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posted
Aneg .. try upping your magnesium levels. It can't hurt and may help!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
you had lyme 3 yrs and only got a month of abx?????
this it nuts
if you arent going for adequate treatment with a lyme doc, then do herbs or something and dont look for fancy long named syndromes for every symptom. Non-lyme docs will be only too happy to diagnose you with an endless number of syndromes. Anything but lyme.
[ 11-12-2015, 11:38 AM: Message edited by: poppy ]
Posts: 2888 | From USA | Registered: Mar 2004
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