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Posted 3/5/2015 7:38 PM (GMT 0)
The symptoms I have been having recently are so similar to all the symptoms you hear about when reading about ALS.

My left hand has been extremely off recently. Today in particular. I am having a little difficulty typing appropriately. The coordination is just off a little and it feels like my fingers are stiffer and moving slower. There is just a little bit of a lag and it won't move with the agility and speed I would like it to. It is stemming from my forearm which is also feeling tight.

Also, my tongue is on and off. Sometimes it feels a little burnt or swollen, others dry and other times it feels like I am slurring my words...speech is harder. My wife doesn't notice anything because it's very mild but I can tell that certain sounds are harder to pronounce. Also, I will have some word combinations that are hard for me to pronounce. like: Million Millennials

How do I know that this isn't ALS? I tested CDC positive for Lyme but these symptoms are terrifying and I've been on treatment since November 20th 2014.
Posted 3/5/2015 7:47 PM (GMT 0)
Hi Happy - Since starting treatment in November - have you herxed? Have you had any improvement?

CDC has a pretty high criteria for testing positive - so I would definitely accept you have Lyme disease.
Lyme disease can give you the same symptoms as ALS. Lyme can affect the nervous system - the CNS and PNS.

It's hard not to worry about other diseases we think we might have. I do it all the time...
Posted 3/5/2015 7:58 PM (GMT 0)
Hi Girlie,

I don't know what a herx would look or feel like. I have better days and worst days and I can't really tell if treatment has done anything for me. I think overall my energy levels are up and the severity and frequency of my symptoms has definitely gone down. I used to have twitching everywhere but primarily my legs...That still happens but much less and much less severe.

The tongue symptoms have presented in the past but not for as long a time. I would have a few days here and there that it happened and now this has been going on for a little over a week.

I don't know what to think!
Posted 3/5/2015 7:58 PM (GMT 0)
Happy,

I have the same issues with my tongue that started about six months into my treatment. It started with a burning tongue but it's felt swollen and tingly throughout my treatment. This started over a year ago and it is getting better but it totally freaked me out as well. I also have had trouble saying certain words and sometimes my tongue has felt sluggish. It ebbs and flows in it's severity so I've finally accepted it as a symptom of lyme. Incidentally, my sister has been diagnosed with RMSF and also has this although her slurring is much more noticeable whereas mine is more subtle. One thing I read is that these are mostly sensory symptoms and ALS is typically more motor symptoms.

I too have had weakness in my hands and limbs. Unfortunately Lyme isn't called the great imitator for nothing which makes it all the more difficult psychologically to deal with the fear that it could be something else. I still go through this (even though I'm CDC, Igenex and Stonybrook positive) and it's exhausting!

Hope this helps!
Posted 3/5/2015 8:05 PM (GMT 0)
Thank you so much KitKate!

As awful as it is, it feels better to hear you experienced similar symptoms.

What is RMSF?

I know this may sound weird but my speech changes frequently. An hour can change how I feel. One moment it's tough to talk and I feel like my tongue is swollen and won't function properly and another, It's not a problem and I feel totally fine. Is this what you were experiencing?
Posted 3/5/2015 8:18 PM (GMT 0)
it's rocky mountain spotted fever- another tick borne infection.

I have something very similar in terms of the tongue feeling off and then fine (another reason why I think it's more lyme related). I was trying to say "lady" today and had a hard time getting my tongue to form the D sound and now it's fine, I can do it with no problem.

At one point I decided to try tumeric powder directly on my tongue because it felt so swollen. It was nasty but it actually made the swelling go down. I just mixed it with water and created a paste and put it on for as long as I could stand it. I also found that oil pulling with coconut oil helps. But this has been one of my most annoying symptoms so I can relate!
Posted 3/5/2015 9:23 PM (GMT 0)
Thank you for that! I feel so much better. Do you get stiff hands or fingers, Like it feels like they are just laggy and not as flexible and responsive as usual? It's the combo of the two that really freaks me out because they are both very strong ALS symptoms.

Anything else you can tell me is great. How long have you been battling Lyme? What drugs are you on etc....

Thanks again!
Posted 3/5/2015 9:48 PM (GMT 0)
Happy

Don't dwell on ALS. Please believe me when I tell you that. You have the golden ticket, you have a cdc positive lyme test. Not that anyone wants lyme BUT it's curable ALS is not.

Easier said than done and I need to practice what I preach but you have a diagnosis of lyme, concentrate on that and getting well, please for your own peace of mind.

Hugs
Posted 3/5/2015 10:03 PM (GMT 0)
Thank you so much Sailorkim! You are so sweet. I totally agree with you that it is much easier said than done. On good weeks I feel the same and then I'll have a few very strong and strange symptoms emerge and I will fall back into this cycle of thinking it's something awful and non curable such as ALS.

Hugs
Posted 3/5/2015 10:12 PM (GMT 0)
Understandable. I am scared every single day but I come here and I find the support to be brave. I truly mean that, there are some awesome people here.
Posted 3/6/2015 2:01 AM (GMT 0)
Happy,

I have occasional hand stiffness but my limb issue is in my right leg/foot. I get extreme weakness there and it's where my first symptoms started. I am better now but have dealt with times when it was difficult to press on the gas and brake pedals - very unnerving.

I started with antibiotics but they really messed with my gut so I switched to full herbals under the supervision of my LLMD. I've been battling this for almost 2 years and I'm definitely better but still symptomatic. I'm also asplenic (no spleen) so that complicates things for me in terms of healing.

My other annoying/weird/scary symptom has been throat/jaw and face tightening, pain, discomfort. When that started happening I got completely freaked out. Sometimes my swallowing is affected so of course I thought here we go I have some other horrible neurological disorder. I'm now thinking (with the help of some people on this board) that the lyme or bart (tested positive for BLO through Fry Labs) has attacked my vagus nerve. And again this symptom comes and goes.

I, like you, have not really been able to tell when I'm herxing or it's just a symptom. But what I have figured out is that these symptoms do come and go. I hope this helps. If I can answer anything else please let me know.
Posted 3/6/2015 2:37 AM (GMT 0)
Great post question. I have had the same question often. My infectious disease doctor kept on bringing up ALS and MS. I was flipping out about it to say the least. I even wrote up my will. I was frantic. He ran a lot of tests and ruled it out. One big thing though you mentioned is YOU HAVE A CDC POSITIVE TEST for Lyme. That is really solid. That is a step ahead most on here.

My question would be are you getting significantly worse? ALS would deteriorate extremely fast according to my Doctor. Lou Gerhig died within 2-3 years. Most don't make it past 5. And if you research ALS, many studies show that antibiotics make ALS much much worse. So if some of your symptoms are going away or you are even at "status quo" I would say it's a move it the right direction of Lyme.

Herxing is definitely a mixed bag. Tough stuff. Sorry to hear this.

Try to avoid self - diagnoses if you can. It messed with my head a lot.

JMOON
Posted 3/6/2015 11:44 AM (GMT 0)
Jackie

What studies have you found that show treatment makes ALS way worse (abx). Do you mean the herx is worse or the downhill slide is faster?
Posted 3/6/2015 12:08 PM (GMT 0)
ALS is curable but that is another topic. What *you may* have is too much oxidative stress. Eating the Wahls Diet, taking anti-oxidants, or just getting your methylation pathway functioning, whatever it takes. Odds are high that you are nutrient deficient. Odds are high that you don't methylate properly. ****

POST EDITED, NOT A MEDICAL SPECIALIST, CAN NOT STATE ABSOLUTES.

Post Edited By Moderator (BnotAfraid) : 3/6/2015 12:07:09 PM (GMT-7)

Posted 3/7/2015 2:38 AM (GMT 0)
Georgia hunter

Thanks for the email earlier. Looking into info you provided!
Posted 3/7/2015 3:53 AM (GMT 0)
I meant the slide. There is no known "direction" reversal. Most meds just try to slow the speed of deterioration.
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4452343/k.2B93/Amyotrophic_Lateral_Sclerosis.htm

Here is just one of a lot of studies about ABX and ALS:
http://abcnews.go.com/Health/Healthday/story?id=4509240

Just relaying info from my DR.

News flash @Georgia has a cure. LOL. Good grief. I just had a friend of a friend that passed from ALS. It is really terrible for all involved.

Kind regards
JMOON

Post Edited (Jackie Moon) : 3/6/2015 9:10:14 PM (GMT-7)

Posted 3/7/2015 7:19 AM (GMT 0)

Jackie Moon said...
I meant the slide. There is no known "direction" reversal. Most meds just try to slow the speed of deterioration.
http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4452343/k.2B93/Amyotrophic_Lateral_Sclerosis.htm

Here is just one of a lot of studies about ABX and ALS:
http://abcnews.go.com/Health/Healthday/story?id=4509240

Just relaying info from my DR.

News flash @Georgia has a cure. LOL. Good grief. I just had a friend of a friend that passed from ALS. It is really terrible for all involved.

Kind regards
JMOON


I was just reporting what physicians treating the disease have said. I can't even cure myself, but if physicians in Europe that treat many ALS patients get the same positive results, I'd surely look into it if I had ALS.
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