posted
I really NEED someone who has these neuro symptoms and a diagnosis of Lyme to post here for my sanity.
I have heard of a few cases where poeple have been diagnosed with ALS only to find that they actually had Lyme and they were treated and overcame their symptoms.
I am a 30 year old mother of three who came down with ALS symptoms in July. *Weakness in Quads/Shoulders *Tightness in Forearms/Calves/Neck *Full Body Muscle Twitches (which are less common now and tend to be in my right foot or in muscles here and there.) *Myoclonic Jerks (In motion, At rest, falling asleep) *SOME tingling and numbness in my 4/5 digits of each hands. I have started taking Doxy 400mg/day orally two and a half weeks ago. I had two days of horrible headaches and feeling Ick starting on the 5th or 6th day... and over the last week have struggled with little bumps (look like poison ivy or a rash of sorts) various places on my body. (Left hand, arm, inside of right foot.) Is there anyone else out there that had these neuro symptoms and also a confirmed diagnosis of Lyme? I don't go to the LLMD until the first week of November and am going CRAZY here. Help!!!!! Michelle
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I can't relate to all your symptoms, but I have had an array of neurological symptoms...and I've been tested CDC positive.
The symptom that lead to my dx was numbness in my foot. Since starting abx, that's occurred almost all the time in my fingertips. Again, since starting the abx, I've experienced paralysis and some twitching, as well as floaters in my vision and an exaggerated sense of smell.
Underlying all the symptoms for me has beena profound exhaustion.
I hope this answers your question and that you're able to find some relief between now and your LLMD appointment.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I have all those symptoms, too, and have been diagnosed lyme+. My neuro symptoms are my worst symptoms by far. It is scary, but not uncommon with lyme. I also, in addition to what you mentioned, have a creepy crawly feeling on my skin, burning sensation on my fingertips (like I have touched the stove), dizziness, spells of feeling like a seizure is about to come on, weakness, and BAD brain fog. In fact yesterday (I am almost ashamed to admit)...I forgot my husband's name! Ugh! I had the rule/out nerve and muscle tests (awful), but I just came up with good ol' lyme! Good luck, and hang in there!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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posted
I have neuro symptoms similar to yours--My legs are weak, I am off balance, my muscles twitch, and I have myoclonus seizures. I have had 2 positive tests for lyme--onw wiht Bowen and one with Igenex.
I am much better now than 2 years ago, but I still have the symptoms at a lesser degree. Hang in there!! Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10180 | From Illinois | Registered: Aug 2004
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posted
Hi-I got lyme 33yrs ago, dx w/MS 14yrs ago, lyme/co-infections 6yrs ago. Then 5yrs ago,got 3 Root Canals (big mistake) I was keeping my head above water B4 the RCs and then everything went down hill faster.
I have the classic MS/lyme symptoms but it can get better. Just don't get RCs to make it worse. I have lesions on the brain, so my ins will cover IVIG treatments (liquid gold)under the MS dx. See if you can get this along with the abx.
I also found out that I have the DR4 genotype, I suggest you test for that also to see what you are up against. I got off abx last yr for 10mo. Bad mistake, got worse, but now I know that because of the Band 31 and DR4 I will always been dealing with this. My husband also has Band 31 but never has had joint pain (better genes than me)
You will get better, it takes time, there is no quick fix for this disease. Have you heard of Dr Martz in Colorado Springs CO? He was dx with ALS, then found out he had lyme. He is back to his practice, opened a Lyme Clinic. Teresa
Posts: 315 | From USA | Registered: May 2005
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posted
I have been treated now for 6 months with orals - my symptoms are primarily Nuero - We are still working on the 4 co-infections - I also had the bumps on the arms - we really think it was from the Bart - my Bart titers are gone now - bumps gone also. Still working on Babs and the others. take a look atDr Bs new outline - at the nero toxin issues. My LLMD hasme on a Liver detox that is helping some of the recirculating nerotoxin issue plus healing the liver from the last 6 months of ABX - The first week was rough but now my nuro issues are extremly better. We will go back with a cyst buster in 2 more weeks. My LLMD is going to the big conference and we will access the next best method touse - thing do get better but that first 6 months had some ups and downs. Also really take a good look at your thyroid funtions. They did the Iodine drop test on the arm, The stain should stay visible for 12 hours. If is disapears in less, it means your low on iodine - direct realation to thyroid funtion. My stain disapeared in 3 hours. they gave me somethryoid suport and iodine sup. Its been 3 weeks now and things are getting much better. The stain now goe away in 8 hours.
Posts: 582 | From milwaukee wi | Registered: May 2005
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