The maybe not ALS journey

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Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/13/2018 8:18 AM (GMT -6)   
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?

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 3/13/2018 8:56 AM (GMT -6)   
Welcome!!!

First, I just want to say I am so thankful that you might not have ALS , not to suggest that Lyme and the co infections arnt dangerous and in some case life threatening.

Glad you have found us and you will see that there are very knowledgeable and supportive members here when you need them.

We do encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has excellent information on Detoxing, symptoms, testing and more.

Others should be along soon and I wish you the very best of healing and soon!!!!

Take care, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/13/2018 11:20 AM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 121
   Posted 3/13/2018 11:25 AM (GMT -6)   
Well we do hear that Lyme is the great imitator!

I'm glad you chose to follow your instincts and not just accept your diagnosis. Hopefully you're on the road to recovery now. Best of luck and keep folks updated on your progress.

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 230
   Posted 3/13/2018 11:44 AM (GMT -6)   
I knew someone who had changes in their voice due to Lyme, it resolved with IV treatment.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/13/2018 11:52 AM (GMT -6)   
We actually have a forum member who lost her voice...and then with treatment got it back.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 12:11 PM (GMT -6)   
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.

Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/13/2018 1:12 PM (GMT -6)   
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.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 3/13/2018 2:10 PM (GMT -6)   
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.

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 121
   Posted 3/13/2018 2:19 PM (GMT -6)   
Same here. With my wife being a nurse I hear all the crap about doctors. It's not all of them, but the medical system in general. Too many doctors are under too much pressure to get the patient in/out in 5 minutes and move onto the next one, book as many as you can and get scored on their RVUs. They will do some basic tests in the order of insurance company approval, but they make lousy detectives and problem solvers. There are exceptions, but they are just that, exceptions.

Like you I had great health and very active and then all the sudden wham here come the strange symptoms. Doctors did minimal testing and I had to push push push to get more. I know they thought I was crazy, but I kept researching and thinking it was this or that. I finally figured out it must be lyme because my symptom pattern fit nothing else. None of them believed it was because my knees weren't swollen and I never had a bullseye. lol Only the neurologist would order an ELISA, and of course that came back negative. When I asked my GP if he intended to do any more testing to figure out what this was (before I suspected lyme) he calmly said no. They all ignored the fact that I have been bitten by deer ticks 40-50 times over the last 10 years. That makes me either the luckiest man alive to not have a TBI or it's all a hoax lyme doesn't exist.

End of rant lol

Mrseaglea
New Member


Date Joined Mar 2016
Total Posts : 18
   Posted 3/13/2018 4:10 PM (GMT -6)   
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.

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2537
   Posted 3/13/2018 4:32 PM (GMT -6)   
I am just so happy for you that you did more research and didn't let this progress further. I have personal experience with someone who has ALS symptoms but chose to not treat aggressively and it has gotten bad. It started with slurred speech then progressed to swallowing issues. I kept telling them about the Jemsek clinic in D.C. because I knew they would do IV abx right away.

I am actually brought to tears reading your story. How many others is this happening to? Why is it easier to give a diagnosis with NO cure? They are so hell bent on denying lyme disease.

Since you have done a lot of research, you may have already heard of Dr. David Martz. He was diagnosed with ALS and actually had lyme disease. He treated with IV - azith, rocephin, flagyl and mepron. Here's a youtube in case you haven't seen it:
/www.youtube.com/watch?v=xkrpKnK-X5w

I am looking forward to following your story. Please keep us updated.

Also, I'm curious, do you have any amalgam fillings in your mouth?

Post Edited (k07) : 3/13/2018 3:39:28 PM (GMT-6)


1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 3/13/2018 4:42 PM (GMT -6)   
ALS? That is a devastating diagnosis!!

If you search this board (upper right hand corner - just below top) for "lyme ALS", you will likely see some good resources/information.

Many, many, many of us have been failed by allopathic doctors and/or written off. (I still have stress from a hospital stay from years ago for Kid#1 -- it was beyond a nightmare.)

Kid#1 had devastating, severe, life-long diagnosis as a young child... and all of those diagnosis have been dropped and has been healthy for over a year now. He was a VERY challenging case to treat, and it took several years. But my point is... lyme (and coinfections) can cause a wide variety of symptoms and diagnosis in people (and children). BUT it is possible to recover and heal... and lead a healthy life again. (But it wasn't easy road of treatment -- but much much much better than the life-long no-hope diagnosis that was given to my child years ago.)

There is HOPE. Truly wishing you the very best in your healing journey. I feel very positive that you are heading in a more hopeful direction of treating the pathogen - instead of just accepting the gloom diagnosis of ALS without any hope. Plus a CDC positive - wow!!! {{{HUGS}}}
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4891
   Posted 3/14/2018 10:31 PM (GMT -6)   
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

Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/15/2018 3:51 PM (GMT -6)   
Thanks for all the comments guys!
It's been a busy few days. I had my mediport installed yesterday and started my antibiotics today.

I went to see a "traditional" infectious disease doctor this afternoon and that was pretty pointless. He really doesn't think it's Lyme and said my positives from the igenex test are most likely false. "Igenex isn't a good lab" were his words.
He did however strongly suggest that I get another opinion regarding the ALS and to be sure that it is out of the current hospital system that I have already been diagnosed from.

I always feel worse after I see these darn doctors!

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2537
   Posted 3/15/2018 4:36 PM (GMT -6)   
What antibiotics are you going to be taking?

Thinking of you and hope you see some progress.

Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/15/2018 4:39 PM (GMT -6)   
I am on an IV ceftriaxone.

Thank you! Me too!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/15/2018 4:48 PM (GMT -6)   
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?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/15/2018 5:06 PM (GMT -6)   
That's the plan.

Yes this LLMD was actually referred to me from a family member that I was unaware even had Lyme.

I am on quite a few supplements that I'm taking along with the antibiotic. I can't think of the names right now. Is there a particular one I should be aware of?

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2537
   Posted 3/15/2018 5:56 PM (GMT -6)   
Hopefully he adds to the iv cetriaxone after a bit.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 3/15/2018 7:21 PM (GMT -6)   
Yep you got lyme. Your back story, symptoms (other than just muscle twitching) and then active band 23.

Because ALS (without knowing the cause) sucks so much more, I feel like it's a celebration to say "Welcome to the lyme world".

You can treat lyme and see improvement, that is the good news.

Even if you had "ALS", ALS is a BS name given to a certain group of symptoms. There's a root cause to "ALS". There's a root cause to every single health issue.

But what happens is when the main stream medical community can't figure out what is causing something aka "Disease of unknown origin" they just slab a name/acronym to it, sell you some meds and say "good luck".

So even if it wasn't lyme related, something is causing it. Finding out what is the key and you did just that.

I experienced very troubling "ALS" symptoms in my lyme journey and through proper treatment and supplementation I recovered and bounced back. You can too.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1903
   Posted 3/15/2018 7:25 PM (GMT -6)   
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.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 3/15/2018 10:45 PM (GMT -6)   
Jonny5 said...
That's the plan.

Yes this LLMD was actually referred to me from a family member that I was unaware even had Lyme.

I am on quite a few supplements that I'm taking along with the antibiotic. I can't think of the names right now. Is there a particular one I should be aware of?


As k07 stated - hopefully a 2nd antibiotic will be added soon. Mono therapy is not recommended for lyme and co's.
That's why I asked if you are seeing an experienced LLMD. You want one that has been treating awhile and really knows his stuff.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Jonny5
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/16/2018 5:34 AM (GMT -6)   
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
New Member


Date Joined Mar 2018
Total Posts : 13
   Posted 3/16/2018 5:36 AM (GMT -6)   
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.
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