Hi, I am really scared after seeing a neurologist last week and he is suggesting ALS as I have atrophy of my hand muscles along with fasiculations in my hands, arms and upper body. I ahve alos lost quite a lot of weight and have become weaker over the last year.
Has anyone else experienced thase symptoms? I had a positeve IgM last July for Lyme.
Posted by glm1111 (Member # 16556) on :
go to symptom list. Have you been dx with Lyme by LLMD? Parasites and Worms play a MAJOR role in Lyme disease.
I was dx in 1999 and had severe neuro symptoms along with lesions. The neurologist I saw didn't have a clue and dismissed the lesions on my brain.
Since treating the parasites I have made great gains and am at the 80-90% mark after being misdiagnosed for over 25yrs.
Gael
Posted by feelfit (Member # 12770) on :
Chris,
I hope that you are treating for lyme if you were IgM positive! Also consider supplementing with Ledum along with lyme treatment.
Lyme/ALS patients ahve done well when supplementing with Ledum.
Do a search here for some old posts by Californialyme on Lyme/ALS
Thinking of you, Feelfit
Posted by shelly23 (Member # 16124) on :
chris how old are you, go to an ALS clinic
Posted by shelly23 (Member # 16124) on :
Also do you have any other symptoms...
Posted by carly (Member # 14810) on :
Chris, I have experienced the same symptoms. Fasciculations - arms, upper body; occasional. (numbness, tingling, other neuro symptoms, too) Muscle Atrophy - all over; mainly left side. Weight Loss - went from avg. to underweight. (no diabetes or thyroid probs.)
Now, after treating for a few months, the weight has been stable - I may have even gained 2 or 3 lbs. The muscles are still weak - I have had lyme for years and some damage has been done. This will take some time. Fasciculations - rare to never.
For ME, ALS was never a concern. As Shelly suggested, it is a good idea to explore all aspects of your symptoms and find out what your particular issues are.
Then you can get the treatment you need.
...Again, to answer your question... Yes, I have experienced similar symptoms and do not have ALS.
Good luck
Carly.
Posted by Chris55 (Member # 19019) on :
Thanks for your responses. I am seeing a LLMD in MO, but I do not feel he is aggressive enough in his treatment protocol. He only uses one abx at a time.
Feelfit, how do I do a search of postings? Every time I go to sitesearch I get an error page from windows.
I saw another Dr in MO who saw cysts and flagella under a dark field mocroscope and he has changed my supplements a bit and is caring enough to call to see how I am doing.
My Igenex IgM was 18 ++, 31+, 34++, 39 IND, 41++,
The IgG was 39 IND and 41++.
I have been on abx since July, plus a month of Doxy back in May when I did feel a bit better then got worse the third week, but the LLMD did not put me back on them but onto Ceftin. I don;t feel I have really herxed except for some minor fevers at night, and my weakness and balance problems have progressed.
I am using Venus Fly Trap and OLE and will be on OO soon as well as Samento and CUmaunda. I am going to try IV Claforin for 2 more weeks to see if it did help, I have had it for 6 weeks and have hsd a break since Saturday.
The fasiculations are mainly upper extremity but I can feel them in my torso at night sometimes and in my legs (crawling sensation.) The atrophy is in my hands between the thumb and first finger, started on the left now begun on the right.
I have other symptoms including the weight loss,(45 #) short term memory loss, hair loss, abdominal wall and rib pain, increased eye floaters, fatigue, brian fog at times, nasal and throat stuffiness, tingling in my feet , heel pain, and many more. Some have improved with treatment but the neuro damage seems to be relentless and it is this that has me worried.
I am getting an EMG next month and a nerve conduction test so it will be interesting to see what they find, I am going to ask for a new MRI or PET scan as the last one I had done was a year ago and at the start of my symptoms.
Oh yeah, Shelly I am 53, so for the neuros I am the right age for ALS. What they don't do though is look outside the box and have so little knowledge of Lyme and it's treatment. He wanted me to stop all of my meds and supplements as "they could hurt me" though he gave no reason why!
Thanks again
Chris Posted by mcoLyme08 (Member # 17650) on :
I have had severe muscle atrophy (lower limbs), 35 lbs. weight loss, muscle spasms and seizure-like activity.
My EMG and Nerve Conduction Studies were not consistent with ALS, but did show nerve damage, with demeylinating features.
I was put on IVIG, with no success.
So far, I've been on severe IV abx. for about a year, with no improvement, but I haven't gotten worse either.
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