The maybe not ALS journey

Hi guys!

I've been coming to this forum for a while now so I figured it was time to sign up and share my story.

It all started around Oct 2017, I noticed some very strange twitching in my left arm. It was unlike any that I have had before so I kept an eye on it for about a week. about week two I noticed that my right arm had the same twitching now. At this point I was starting to get alarmed and decided to make an appointment to see a doctor. I also noticed over the summer that I slurred a couple words, nothing major but I figured maybe they are connected. In the meantime I figured I would give google a look...BAD IDEA!! Now I have ALS according to google! This sent me into an anxiety frenzy!

I got into a GP rather quickly and they ran some basic blood tests and told me, "I'm sure its nothing and will go away" but they did put in for me to consult with a neurologist. The blood work came back good so
I made a neurologist appointment. My neurologist gave me a clinical exam and was concerned with some of my strength tests and my brisk reflexes. He ordered some more blood work and wanted me to get an EMG.
Blood work all looked good again. I was able to get the EMG done at a month after I noticed the twitching symptoms. The EMG results showed the twitching but no nerve or muscle damage. So this was reassuring. I also had a cervical spine and brain MRI done. These were normal, but the brain MRI showed some increased flair. This was non descriptive so no real concerns at this point. I continued on with the neurologist following up every couple months. No real changes were noticed until my 3rd follow up visit. During my 3rd visit my neurologist noticed changes in my voice and wanted another EMG performed. He was really leaning towards ALS now.

I had my second EMG done in February and I was called 2 hours after the test and asked to meet with my doctor! This can't be good right?! My wife and I rushed to his office already knowing what he was going to say. The doctor comes in and drops the bomb on us. "Unfortunately you have ALS...the EMG showed significant changes from the first one..." That's all I really remember of that meeting. Obviously we were both devastated. I'm 38 years old and have a 5 year old son that I am not going to see grow up. A million things go through your head.

After given this diagnosis I was put on rilotek and we discussed the radicava infusions. That's really all you get, good luck and enjoy your limited days while you can. Not really accepting this as a diagnosis, we began to do a ton more research. This led us to Lyme disease. It sure does sound like a possibility since I did do a lot of camping and outdoor activities over the summer. As I learned more about Lyme, I realized I had some of the symptoms. There was a week in September where I was sure I had the flu, but it never spread through my household as usual. I was experiencing bad headaches, I had to miss work because I couldn't function. I never get headaches like this! At my request my neurologist puts in an order for a western blot. It was just to humor me because its "highly unlikely to be anything else" "in my heart of hearts I feel it is ALS and nothing else".

Well the western blot came back negative but had some very interesting bands on it. I was positive Igm on band 41 and positive Igg on bands 41, 66, and 23. That 23 band was very interesting because it is specific to lyme. Knowing that my neurologists are not going to acknowledge this as being suspicious, I was able to find a LLMD. My LLMD ordered a TON of blood work and an Igenex WB. While waiting for my results it hit me...I remember a weird bug bite while camping in August 2017 that was a weird rash! I remembered showing it to my wife asking "does this look weird" luckily she remembered now too. So many symptoms had come and gone since then and I never put anything together.

A couple weeks after meeting with the LLMD my results were in! Wouldn't you know it it came back Positive! Both by Igenex and CDC/NYS standards on the IgM!

Here are my results
IgM Positive
39+
41+++
58+
66+

IgG Negative
23-25 Ind
30+
39 Ind
41+++

Now I go in tomorrow to have a mediport put in and begin 30 days IV antibiotics. Hopefully I will see some improvement now.

I am obviously relieved to have tested positive for lyme, (as sick as that sounds) but at the same time I am still worried about the looming ALS diagnosis.

Sorry for the lengthy post but I tried to keep it as short as possible.

What do you guys think of all this?

Hi Johnny5 - welcome!

I'm sorry for all you've gone through...but glad that you have Lyme disease - and it's something treatable. (sounds odd to say I'm 'glad you have lyme disease')


I recommend you find a top LLMD to treat you, one that is very experienced and has treated people misdiagnosed with ALS before.

Not sure where you live...but you can send me an email if you want.

I knew someone who had changes in their voice due to Lyme, it resolved with IV treatment.

Jonny5,

Welcome and thank you for sharing your story!! I know I've read where others thought ALS and it wasn't. I'm sure some will respond when they see this.

Great job of sleuthing it out and not settling for that diagnosis!!

I spent years shirking the idea of Lyme disease even when doctors asked questions. All I knew about Lyme was you got it from a tick bite and had a bullseye rash. I never had neither as far as I knew. I didn't know the truth then. Even after I got really sick and obsessively googling symptoms, I stuck with only the "legitimate" sources and avoided anything "alternative" or "out there", successfully missing anything that sounded remotely like what I was experiencing. If I had learned and started treatment sooner, I probably wouldn't have gotten to the point I'm at now.

I had voice changes, too. An allergist even commented on it a few years back. Seemed to come and go. I haven't noticed it in quite some time.

"I lost a lot of respect for doctors over this." -- Ditto. Well said.

I'm very glad you didn't just accept your ALS diagnosis and kept pushing for answers. Lyme treatment will be tough but it's better than the alternative. I, too, have lost a lot of respect for most doctors over this. I dread going for regular check ups at my GP or dermatologist's office. How these doctors can live in the Northeast (or anywhere now!) and close their eyes to what is going on with lyme disease is insanity!

Good Luck and let us know how things go.

als is bs imo ...they gave it to me but after treating for lyme and bart for 2 yrs with various and copius treatments including 1.2 yrs of multiple iv abx and bvt- i am 80%... active working and not twitching ...same with the nurse that saved my life ...read dave martz story please and contact his clinic....hmu on lymenet if i can help

What antibiotics are you going to be taking?

Thinking of you and hope you see some progress.

Jonny5 said...
I am on an IV ceftriaxone.

Thank you! Me too!

Jonny - fight it hard...and don't waste any time.

I didn't read through all the posts again...so I'll just ask...are you with a very experienced LLMD?
I would find one that really knows his stuff and has been treating lyme for many years.


What are you taking with the IV Cetriaxone?

Hopefully he adds to the iv cetriaxone after a bit.

Jonny5 said...
Thanks for the warm welcome guys!

I just had a hard time believing that I had such a rare disease. I have been very healthy my entire life and it just didn't make sense.

The sad part about it is these "traditional" doctors were fine just leading me down the hallway to the gas chamber. When I asked about Lyme they shrugged it off. If it were their life I am sure they would exhaust every possible cause. I lost a lot of respect for doctors over this.

My voice is strange...there are times when it is pretty normal. Basically low stress situations. Other times I struggle to get the words out and they are very nasally. Of all my symptoms it is most frustrating because I am a rather social person.

Common lyme symptom my friend. I get hoarsed voice and when lyme was really bad would have quick sand mouth and not just slur my words but have a hard time moving my mouth to the proper shape to form words.

Heck, half my face would go numb (nerve issue NOT ALS). It's over 2 years later, I would have been dead by now. I'm actually in the best physical shape of my life post lyme.

My speech will get kind off hoarse, but for the most part it seems air movement or soft palate related. Like the air from my voice escapes into my nose.

Jonny5 said...
I will also inquire about the antibiotic regimen.

It may be a coincidence, but this morning I actually woke up with more energy and feeling better than I have in a long time.

That is great! Let’s hope it continues.

Did your llmd talk about detox? In general, it is a good practice for everyone. But when killing off bacteria it is even more important to help your body get rid of bad junk. I like epsom salt baths, bentonite clay baths (messy!), FIR sauna, hot lemon water with fresh ginger, and binders like modified citrus pectin, charcoal, etc. Lot’s of other things you can do.