Thank you!!! This forum saved me!

I wanted to thank the many contributors on this forum for sharing their stories about Lyme symptoms. It motivated me to find an LLMD and I am now recovering after just two weeks. I have progressively been getting worse for 2+ years now. I have twitches and muscle weakness as my primary symptoms but another dozen symptoms like confusion, fatigue, joint arthritis, etc…. Back in November 23’ I was negative on an ELISA test and then a neurologist diagnosed me with ALS. I was ready to accept the diagnosis but happened to come across this forum and your stories convinced me to have specialty lab blood work. They found Lyme, Bartonella, Babesiosis, Rickettsia, and about half a dozen other viruses/infections. After just two weeks of treatment I’m seeing improvement. It’s not a huge improvement yet, but it’s the first time that I have improved in over two years. You guys saved my life as far as I’m concerned. I am looking forward to sharing more details soon, but I just wanted to say thank you!! I love all of you!!

Wow, that’s got to be a good feeling to have some improvements in such a short time.

I don’t know if you tried to get any massages for the muscle weakness, but for most people that helps, but is expensive and time consuming and you have to repeated. Without going in depth, It seems to be circulation related. Have you ventured into the world of soft muscle release and rolling on the mini available variations of foam rollers…..and tennis balls , and even kids rubber baseballs for more specific areas. That kept me mobile enough to stay employed, even though I had to change a few jobs to find one that fit.

It would be interesting to know what test you had that finally showed your positive results. If you didn’t mind sharing that, it can help people in the future.

When you start scrolling through the forum archives, there’s a lot of new information for a newbie to absorb. It took me about two years of reading here before I finally looked for, and found an LLMD myself.

I knew an outdoorsman in my town who was diagnosed with ALS. But after talking to his brother is sounded more and more like tick illnesses.

Welcome to the club.

I wanted to update this post with my story/symptoms...

I had a tick attached to my head in early summer of 2020. I did not know anything about Lyme and did not think anything of it. I don't remember getting sick or any rash at the time. Then in Jan. of 2022 I noticed very small muscle twitches in my shoulders. It soon migrated to my upper arms and neck. I could not even feel them, but noticed them in bed one night. I began physically feeling them by the summer of 22'. Later that year I noticed weakness in both shoulders but more in my left shoulder. By this time the twitches were in my entire arms. Then in early 2023 I noticed weakness in my biceps. Again the left was more affected. I noticed sloppiness in my handwriting in late spring. I began taking magnesium and electrolytes and it helped my hand writing but my twitches were throughout my whole upper body and lower face now. It was late summer that I started seeing doctors and the twitches were going down my left leg. I had an emg and ncv test done. The emg was 'dirty' and the ncv even showed nerve problems in my wrists. Two neurologists diagnosed me with ALS. It was quite brutal. I had an ELISA test done just before they diagnosed me and it turned out negative. I live in Texas and Lyme is really unknown to most people I've talked to. By this time my voice was getting weaker and my chewing and swallowing was something I had to concentrate on. But some things just didn't make sense to me. NCV tests are clean in ALS but mine was not. I asked my doctors why I had swollen pads on the base of my palms andd they pretty much ignored me. It was like I had carpal tunnel. And these showed up right when I started having weakness in my hands. As I read information here and other places about joint arthritis and tongue spasms and difficulty concentrating, I started putting 2 and 2 together. I always thought my joint pain was from playing football in college and my kids would ask me why I take so long to answer their questions. I decided to find an LLMD and got a specialty lab test from Vibrant Laboratories out of California. Here are some details of the results for Lyme

B. burgdorferi
IgG IgM
VlsE1 12.6 11.5
p18(DbpB) 12.1
p31(OspA)16.1 10.2
p34(OspB)14.0 11.2
p45 14.0

I was also positive for Babesiosis, Bartonella, Ricketsia, Epstein Barr Virus, Parvovirus, Herpes Simplex 1, Cytomegalovirus, and mycoplasma pneumoniae

Now I don't have a clue what that really means, but in just dropping some medicine that my LLMD gave me I started seeing improvement in just a few days. It was small improvement, but it was the first time I saw improvement in more than 2 years.

Now I'm taking multiple supplements and medication (details below) from my LLMD and am ready to fight to get my health back. I realize its not going to happen over night but its much better than the fight I thought I was about to have with ALS. Here is my regimen

Supplements- Glutathione, NAC, Alpha Lipoic Acid, Vitamins B C D, Turmeric

Herbals- LDM-100, Reishi Mushrooms, lumbrokinase, mold detox, CBG nasal spray

I bought an EWOT(exercise with oxygen therapy) system and this has helped my hands more than anything.

We will most likely be trying antibiotics after a planned ski trip. Anyways, I just wanted to share my symptoms just in case someone else has doctors trying to tell them they have ALS. No one has ALS until ALL other conditions are completely ruled out or you just give in.

Well, that says something about the vibrant test.(!)

Super interesting to hear you say this. I actually did take a picture mid October last year that shockingly showed the left side of my face drooping compared to the other side. I never noticed it other than that picture. I did notice the left side of my lip quivering a lot on one time it ‘stuck’ down for about 30 seconds. It has not done anything for the last couple months.

I had a ‘dirty’ EMG in mid October last year. When I did the EMG, my biceps were like noodles. It was only my biceps and shoulder blade muscles that sowed abnormalities. My MRI’s were all clean so no MS diagnosis. Now my biceps muscles can flex but my wife curls more than me. But I have definitely gotten stronger in the right one.

my partner lost the use of first one arm and then the other early on in the course of her illness

each one was acute and extremely painful to move and painful enough to keep her awake at night for 4-6 weeks each - then they gradually improved

initially she couldn't raise them above her head - then gradually strength returned - it was gradual - but it did get better

in her case MRI and CAT scans of the shoulder and spine were 100% clear - so the doctors had no explanation

but it turns out its radiculitis - a common sign in lyme disease - one that's been documented since the 1900's in Europe

resulting in inflammation of the radial nerves as they exit the spine and radiate into the head and body - there are 10 or 11 of these nerves - one is the facial nerve that controls the muscles in the face - one for each side - that's the one that is involved in Bell's palsy ( face dropping)

it will usually gradually recover - but you may need to do physical therapy to make sure the muscle and especially the nerves get the signals needed to stimulate the repair to get the full function back

I agree with you, Garzie. After you put out the fire in the brain or nervous system, you need to retrain the brain or nervous system. Relentlessness is key.

My son isn't ready to take a victory lap or be a poster child, but he's come a long way. In his case, since he was a pediatric Lyme patient, it may have been a little different. He didn't previously have certain functions, then lose them, then regain them. He had Lyme during sensitive developmental windows.

As a child with more human growth hormone, he was resilient, and it wasn't hard to get his symptoms into remission. But he needed so much therapy (speech, vision, auditory, physical, occupational) to gain the functions he never had before.

For adults, it's probably a little different. It could be a little harder to get the Lyme symptoms, into remission, but a little easier to regain the function that was previously known.

I was just re-watching the movie based on the story of Bruce (Dragon: The Bruce Lee Story). It's very inspiring. Exercising is definitely very important.

Another inspiring story is that of Ido. He wrote his own story in his first book, Ido in Autismland. He went his whole life without being able to feel or control his own body. He could only feel his own body in a swimming pool. He became driven as a teen-ager. After lifting weights and learning to play the piano, he is now able to feel his own body in terms of both gross motor skills and fine motor skills. (He still uses keyboarding to communicate. Speech is especially sensitive to developmental windows having been missed.)

aTmLyme I didn't know about EWOT. I've bookmarked it to come back to. That's amazing that it helped you regain function and strength in your hands so rapidly.

Love hearing these stories everyone. I’ve gone from the depths of hell 6 months ago, to having the best week of my life every few weeks because I notice improvements. I’ve stalked a lot of Lymies in different forums but this one is what really motivated me to go get the specialty testing.

Hope any of my treatments that I mention can help anyone here. Something I have been doing lately is Myofacial Release with my LLMD’s husband. He finds cysts in my muscles and growing on my bones. Then he ‘rolls’ them with his elbows and different power tools. In the last two weeks, we have been working big ass cysts (he calls them adhesions) in my cervical spine just below the base of my skull. No doubt these things are causing the majority of my problems. I’ll be doing a separate post about it soon. I feel like it bust up the cysts more than biofilm busters do.