no more fasciculations update

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no more fasciculations update

Postby eric on January 5th, 2004, 10:27 pm

I posted awhile back about how I was able to stop the fasciculations. they did not stop just like, that it took 4 months of constant high dose antibiotics. as many of you dont know I had muscle atrophy in the calves and just above the ankle. it was as if my legs and ankles were getting thinner. I showed this to my infectious disease doctor and he said once the infection is under control this will all reverse. he said that I had inflammation of the blood vessels of the brain and that it was hard for any neurologist to find it since there initially is a fever, and then nothing because lyme spirochetes after a brief fight from the body are able to fool the immune system in not attacking it. that is why I have a vasculitis with no fever and it is unheard of from neurologists because of that reason.
the next stage of this disease is autoimmune but reversable.
I am alot better then I was before but I have along way to go to get better. the reason for me bieng at this stage of lyme is because of the ingnorence of doctors who dont listen to there patients.this could have all been avoided.
eric
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Postby Twitchlots on January 12th, 2004, 11:31 am

Eric...I'm in the same boat as you. My Lyme appt isn't until 2/9/04. I've done a lot of research on Lyme disease and am 110% certain that is what is causing my twitching, etc. I live in Maryland and here on the east coast Lyme is an epidemic in 10 states! Keep up usdated. I plan posting an update on myself after I see the Lyme specialist in Washington DC.
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Postby Twitchlots on January 12th, 2004, 11:34 am

I know my profile says West Virginia but we were right on the WV/MD border and have since moved "across the bridge." twitchlots
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Postby eric on January 12th, 2004, 11:03 pm

Twitchlots wrote:Eric...I'm in the same boat as you. My Lyme appt isn't until 2/9/04. I've done a lot of research on Lyme disease and am 110% certain that is what is causing my twitching, etc. I live in Maryland and here on the east coast Lyme is an epidemic in 10 states! Keep up usdated. I plan posting an update on myself after I see the Lyme specialist in Washington DC.

from your posts it sounds like you may have it.
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Postby Sahti on January 24th, 2004, 6:14 pm

Eric!
It must be such a relief to know that your emotional turmoil is ending. I'm glad to hear. I'm still researching Lyme and another autoimmune disease (Celiac) which my doctor highly suspects I have, after she ran a battery of blood tests. I will be making a post on this situation shortly! PLEASE keep us updated :)
Also, Twitchlots, don't mind the criticism from other BFSers, the twitches are caused from a wide range of ailments, are usually never ALS, and some twitches just... twitch! Many people's situations differ - I made a reply to your post.
"The most important things are the hardest to say, because words diminish them." - Stephen King
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Postby Floater on January 29th, 2004, 9:23 pm

:lol:
Last edited by Floater on July 15th, 2004, 8:32 pm, edited 1 time in total.
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Postby eric on January 29th, 2004, 11:04 pm

Floater wrote:Eric you mentioned you had vasculitis....Is that where your blood vessel dialate causing hyper dyndamic circulation ... i twitch all the time...but along with my twitching my palms of my hands and feet have become red...like there is to much blood flow to those parts....i can move the blood around by pressing on my fingers....also my face flushes everyday after work... i went to the doctor ....he told me i had rosacea and put me on tetracycline 500 mgs a day....my liver enzymes are also slightly elevated...but cat scan revealed my liver is normal...now they want to do a biopsy of the liver....i donno....i think something weird is going on and you mentionrd vasculitis.....what antibiotics are you on ? just out of curiosity..

aaron

I had inflammation of the blood vessels caused by the lyme bacteria. infection directly of the blood vessels and the skin and reduces blood flow in areas.
how long were you on tetracycline? did you get a herx while on it? this is very important! let me know.
I am on intrevenous rocephin for 4 to 6 weeks I just started today. i was on biaxin for three months and doxy 1.5 months and amoxicillan which had no effect.
do you have tender spots in your neck that feel like a muscle always hurts deep down? do you find your self cracking your neck or back more often then most people? do cuts on your arms look like a bluish hue?are your eyes hurting behind sockets?
let me know?
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Postby Floater on January 30th, 2004, 7:18 pm

i been on tetracycline 1 500 mg pill a day for rosacea.. been on it for 10 days so far.. One month after the twitching started all the joints in my body would crack and pop with the slightest movement....especially in the shoulders and knees....i mean every joint except my knuckles. they did not crack....hundreds of pops a day...but over time the popping became less and less... my liver enzymes also elevated during bfs. also had myoclonus and a couple nights i awoke drenched in sweat...weird neuro things happed to me like when falling asleep my arms and hands felt like they disapeared... i had no sence where they were until i moved them...my head and right hand use to shake real bad while falling asleep... i can go on and on... but my twitching seems to be less and the buzzing seems to be dying down and my joints barely pop since taking antibiotics.... but i also take klonopin so that might factor in the improvement... with time we will see... my big problem now is the facial flushing and blood collection under the skin of my palms and soles of my feet... caused by excessive blood flow.
oh yeah... one month before bfs i had touched a tick on my friends dog but never was bitten...maybe i should have washed my hands.

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Postby eric on January 30th, 2004, 9:31 pm

Floater wrote:i been on tetracycline 1 500 mg pill a day for rosacea.. been on it for 10 days so far.. One month after the twitching started all the joints in my body would crack and pop with the slightest movement....especially in the shoulders and knees....i mean every joint except my knuckles. they did not crack....hundreds of pops a day...but over time the popping became less and less... my liver enzymes also elevated during bfs. also had myoclonus and a couple nights i awoke drenched in sweat...weird neuro things happed to me like when falling asleep my arms and hands felt like they disapeared... i had no sence where they were until i moved them...my head and right hand use to shake real bad while falling asleep... i can go on and on... but my twitching seems to be less and the buzzing seems to be dying down and my joints barely pop since taking antibiotics.... but i also take klonopin so that might factor in the improvement... with time we will see... my big problem now is the facial flushing and blood collection under the skin of my palms and soles of my feet... caused by excessive blood flow.
oh yeah... one month before bfs i had touched a tick on my friends dog but never was bitten...maybe i should have washed my hands.

aaron
are alot of your symptoms really related to sleep or initiating sleep?also can you clarify what you mean by excessive blood flow and is this what a doctor would say that is happening.
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Postby Floater on January 31st, 2004, 12:27 am

i use to have sleep problems...i was on ambien for 6 months...then came the twitches...the bloodflow thing...well my palms are red...which is a symptom of people with liver disease...its called palmar erythema...my doctor said its not liver palms persay...he thinks i didnt do enough damage to my liver to cause them to get that red...its like the capillaries are dialated and congested with bloodflow////causing the palms to be red.. if i hold my hands up in the air they become normal in coloration..but if i bring them down they start to speckle and get red...they pulse sometimes and feel warm...palmar erythema is found in other diseases like reumatism,,, thyroid problems ..pregnacy.. lung disease.. i donno....all i know is i notice the change..
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Postby garym on January 31st, 2004, 10:29 am

aaron,

just so you will know, when i put my hands down (i just did it), they do the same thing. They turn red with little white spots, and when i pick them up it goes away, and they return to normal coloring. Try not to focus on all the symptoms, or find new ones. I've had all the symptoms you listed, and different ones also, but I almost went nuts looking for and finding "new ones" that weren't actual abnormal. The only way i've remained sane is to avoid this cycle of searching and hyper-sensitivity to changes in my body (there are times when i'm unsuccesful).

good luck, and maybe you should find someone qualified to check for lyme. I for one believe there can be/is a connection for some of us.

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Postby eric on January 31st, 2004, 6:58 pm

Floater wrote:i use to have sleep problems...i was on ambien for 6 months...then came the twitches...the bloodflow thing...well my palms are red...which is a symptom of people with liver disease...its called palmar erythema...my doctor said its not liver palms persay...he thinks i didnt do enough damage to my liver to cause them to get that red...its like the capillaries are dialated and congested with bloodflow////causing the palms to be red.. if i hold my hands up in the air they become normal in coloration..but if i bring them down they start to speckle and get red...they pulse sometimes and feel warm...palmar erythema is found in other diseases like reumatism,,, thyroid problems ..pregnacy.. lung disease.. i donno....all i know is i notice the change..


in the early stages of lyme I had red hands and the cuts on my hand were bluish pink. i could not think of why this plus other symptoms were happening and I would show my wife and say my hands they are not normal. normal is when they have a beige hue but this is complete red and yes I would put them up in the air to stop the color. that was early lyme ! also I had tingling in the hands. good luck
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