I'm new to this board, but I wanted to get your opinion. This is going to be a bit long and I apologize.
Two years ago, I started having extreme fatigue and tremors. Soon afterwards, all heck broke loose and since then I've been dealing with painful muscle spasms in my legs, arms, back, shoulders, ribs, etc. I've also had buzzing and tingling sensations, burning nerve pain in my feet and face, numbness in my feet and face, pain and stiffness in my left elbow and both hands, shooting nerve pains, weakness in my legs and arms, slurred speech, balance problems, extreme forgetfulness - well, anyway, you get the picture. It's been horrible trying to cope with all of this and not knowing what was going on, especially since I'm getting progressively worse and have lately had to use a cane to walk. I also lost my job because of this stuff.
I've been seeing an MS specialist for two years and have had every test possible - MRIs, spinal tap, blood tests, a nerve conduction study, EMG, evoked potentials, etc. The only test that ever came back abnormal was the evoked potential test on my left leg. (By the way, I have a present Babinski reflex in that foot too.) I had a Lyme disease test too, and they tested for Lyme disease when I had my spinal tap, but both tests were normal. My PCP feels that I have MS, but there are no lesions on my MRIs, so now we're all stumped.
A week ago, my GI doctor started me on two antibiotics for a bacterial infection in my stomach which was causing an ulcer. I'm taking 2000 mg. of amoxcillin and 1000 mg. of Biaxin a day. When I first started taking the meds, my neurological symptoms all got worse and I felt horrible. However, yesterday, I woke up without pain, no tremors, no buzzing, no weakness, and was able to walk with barely a limp. My mind seemed clearer too. I actually felt normal for the first time in two years, and I feel the same today.
Do you suppose that I might have Lyme disease and the antibiotics are helping? Would I see a difference in just a week's time? Are those doses of antibiotics strong enough to make a difference? And if it IS Lyme, will 14 days on antibiotics be enough? (Oh my gosh, it would be awesome if this were true and I get back to normal or near normal!!!)
Last edited by TNWalker0709; 07-14-2008 at 11:42 AM.
Unfortunately it sounds like you have Lyme's. Lyme's tests ARE NOT always accurate. There are many many people who have had Lyme's test come out negative and they had Lyme's. So PLEASE be careful trusting these tests. Because your symptons are affecting several systems in your body, you should definately consider Lyme's. Especially the forgetfullness paired along with muscle pains and spasms. VERY typical with Lyme's. I have had Lyme's now for 10 years and it has been a long, hard struggle until recently. Luckily I tested positive the first time. So I knew I had it, however meds did absolutely nothing for me expect make it dormant for a few months and it would come back. I personally have had no luck with antibiotics, however I am alergic to amox. so was not able to take it. My symptoms included: Extreme exhaustion, feeling overall weak (like I got hit by a bus) muscle weakness (like I cant even lift my arm), spasms, ankle pain, heart palpitations, tingling, joint pain, forgetfulness (search 2 hours for my keys, forget where I am going, etc, etc., feeling like I am in a fog, and weight gain. However, Lyme is multisymptomatic and mimics 200 other diseases. There are hundreds of symptoms but the most telltale signs are that it affects different body systems all at the same time.
As far as the amox. making you feel better. Yes it is possible!!! Unfortunately, traditional meds didn't help me however I found a website that several other lyme sufferers created that recommends salt and vitamin c. I have had lyme's for so long with so little help from doctors so I thought I would give it a try. It started working almost immediately, I actually felt it moving throughout my body. It was incredible with 1 day I felt SOOOO much better and within 2-3 I couldn't believe it. After 10 years of suffering I felt like a normal human being again. I remember thinking, wow, is this how normal people feel all of the time, its amazing!!!! Unfortunately I was diagnosed with Lyme's when I was 22 and spent most of my twenties in pain but now at 32 I feel so young again. Anyways, back to the amox. 14 Days is DEFINATELY not long enough. You would need a MINIMUM of 6 weeks of treatment maybe more being that you may have had it for 2 years. And there is also a possibility that the Lyme will go dormant for a few months and come back being that you are probably in the later stages. If the amox stops working or you have difficulty finding a doctor to prescribe the amox for more than the 14 days than try this website: lymephotos.com. It worked miracles for me, just make sure to drink plenty of water. Some of these people are using a continual treatment. However, the salt + C combo gives serious gas, and going to the bathroom (#2). I take it for a few weeks and than I discontinue to give my intestines a break and then start again when I start feeling unwell. It has worked miracles for me. I had lost hope. However, it sounds like the amox is working for you so go with that first. I know how you feel and what you are going through, it is a battle every day just to do the every day normal things. And the clearness of the mind is amazing. Good luck to you.
I am sorry you have been sick for ten years. Were you ever tested for the co-infections ticks can transmit--Babesiosis, both types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? Often, when people do not improve it is because they have co-infections that have not been treated.
Sounds like Lyme disease or some co-infection (not Lymes). There is no 's' on Lyme disease.
I have been struggling for a year and finally got diagnosed and finally got some positive testing. But, I ended up having to go out of state and finding a competant doctor. My local PCPs did not believe me. S#$# them. get to someone good.