Connection Between ALS and Lyme disease?

[kneecey53215]

my aunt has been diagnosed with ALS.

I think it just seems a little strange that she had been bitten by a tick a month before she started to have slurred speech.

shortly after she started to have the muscle deterioration.

I have read others talk about misdiag.

I truly believe this may be the case with my aunt. Anyone else think the same?

[Terry]

I was diagnosed with ALS in August and a week ago got positive results from a Lyme test. I meet with a infectious disease specialist on Friday.

[kneecey53215]

how often have you been getting tested for lyme's? were you bitten by a tick? tell me a little more about yourself please :) thank you

[kneecey53215]

what did the infectious disease specialist say? im so glad you didnt give up & remain thinking it was als.

this is a problem with my family. i think everyone is just going with the ALS diagnosis & is not searching for other answers. my aunt was bitten by a tick. thus, youd think someone would keep getting her tested for lymes right?

i wish i could help....

[Terry]

I get tick bites 4 or 5 times a year. I've had as many as 10 ticks on my clothing at once. Ticks like tall grasses. I have several farms enrolled in Wetland Reserve Program which are all tall weeds. I also spend time each spring with my farm clients touring their operations.

I fired my GP when he would not give me a Lyme test after my ALS diagnosis. My ALt Med MD ordered a kit from Bowen Research and I was tested about 2 weeks ago.

I meet with an infectious disease specialist to discuss the results at the end of the week.

Do a search on "ALS Lyme" you'll find all sorts of interesting reading.

[Terry]

I have Lyme disease. Yippee!

I met with the Infectious Disease Specialist this afternoon. She said based on the high antibodies and that I'd never had Lyme treatment that I had Lyme. I start 100 mg of doxicycline twice a day tonight.

Its oral so I might have to fight some nausea. But that's better than the alternative.

Some people see results in a week. Others it takes up to 3 months. I'll take it for a month either way.

I'm excited.

[Al]

Great ! Terry Let us know how you are feeling every few days if you can.

[Terry]

I've been on Doxicycline since Friday. Saturday night I had a big boil on my chin. I took some aspirin and it was gone by the next morning. Also had some sharp pain in the base of my shoulder that radiated out my back. Aspirin helped with that also. I'm guessing those were Herxheimer reactions.

Got on the bike Sunday morning and rode 42 minutes like it was nothing.

This morning woke up with a head ache but aspirin took care of that also. I had more head aches in the morning in the last 6 months than any time of the day the rest of my life.

I bought a laser machine ($12,700 US $). It really helps with joint pain and muscle strength.

I'll post again in a couple of weeks.

[upila]

Hi Terry,
Wish your posts keep on posting good news!
Question: is there a web-site on the lazer machine? What is the principle of it's operation?

[Terry]

How its going:

The first week I had some herxheimer reactions. Extreme fatigue, nausea and knocking in the ears. These are common herx reactions to the bacteria dying. I've had this for some time so there is a build-up of Lyme bacteria neurotoxin in my body. Your intestines reabsorb the toxins.

The ionizer detox foot baths I've been doing have probably helped my symptoms by clearing some of that out. there is a drug that can bind the toxins. I'll talk to my Alt Med MD about it next week.

[gapwedge]

Hi Terry -

Did Bowen say you don't have als? Or did they simply say you have Lyme? Before the Bowen test, did you test negative for the other two standard Lyme blood tests ... Western Blot, etc.. or did you never take these other tests? Finally, I see this current antibiotic is doing a number on you, has your doctor suggested looking at metronidazole or tinidazole as another lyme treatment?

Thanks

Tom

[Terry]

gap:

I've been diagnosed as having Lyme. Clynically and thru the bowen test. That does not mean I don't have ALS. Since my general health has greatly improved in the last 2 months, my theory is I have Lyme which has manifested Bulbar ALS symptoms.

Secondly, I'm having common Herxheimer reactions(those are caused by Lyme bacteria dying).

I'm trying to get the doc to rachet up my doxycycline to 400 - 600 cc's a day.

[gapwedge]

Sounds like a plan Terry. I wish you the best of luck. God bless.

Tom

[dana]

Hey Terry,
What were your ALS symptoms before you started the Lymes treatments? My dad also has the bulbar symptoms and has tested positive for Lymes. He is on the iv rocephin and other oral medications, and seems to feel better both emotionally and physically. I notice that he still gets tired, and that his speech is still not the best, but both he and his doctors think that he is improving. His symptoms were mostly all with his speech, but he was also having choking episodes. The docs haven't ruled out ALS, but they know that there is some other stuff going on with him since he tested positive for Lymes. Just curious to hear what your symptoms were.
Dana
Oh, by the way, my dad was tested for Lymes at the Igenex lab.

[Terry]

Dana:

I was diagnosed Bulbar ALS on August 12. At that time I had 45% lung expansion, could barely talk and had choking episodes every meal. I had irritable bowel syndrome.

Once I changed my diet, got on supplements, started the ionizer foot baths and laser treatments my general health improved greatly. All of the following changed before I was diagnosed with Lyme.

On the take a deep breath and count out-loud test I went from 13 to 28. I can carry on a normal conversation with slightly slurred speech. I have a choking episode about twice a week. I have greatly reduced the impact of irritable bowel syndrome.

I've been on Lyme antibiotics since October 15 and the only improvement I can notice is I feel "pumped" after lifting weights instead of wasted. I still twitch.

I start on Welchol tonight. Welchol binds with the Lyme neuro toxins and allows you to pass it with bile and other wastes. I expect to see some improvement in a couple of weeks.

[dana]

Never mind Terry...I just read your introduction which answered some of my questions. Has your speech and choking gotten any better since you started taking the medications?
Dana

[Terry]

Dana:

I've only been on antibiotics for 2 weeks. If there has been an impact on speech it has been slight. My biggest improvements on speech have come from electronic accupuncture. That is instantaneous.

I took Welchol last night. It sure fired up the irritable bowell syndrome. I've got a 2 day tax seminar next week. I won't be taking it those days. The week after I'm going to Arkansas duck hunting so I'll probably lay off it then also.

[dana]

What is the electronic accupuncture? Is it similar to regular accupuncture? Do your receive these treatments from a doctor? I'll pass this info on to my dad. I think he would try anything to get his speech better. He practices reading aloud hoping it will improve his speech. I think it gives him a little confidence boost if anything. Thanks for the info Terry. I appreciate it.
Dana
Have fun duck hunting. We have a lot of ducks and deer where I live...a hunter's dream! :)

[Terry]

Dana:

The eletronic accupuncture is similar to regular. I've been on Welchol for 10 days and I'm starting to get some results. Feel like I'm getting a spring back in my step.

[gapwedge]

Hi Terry -

Also very interested in you success in improving speech using electronic acupuncture. I'm assuming you have the e-Acu-Pen electronic acupuncture pen, right?

What part of your body do you apply it to that makes your speech improve? I've looked for acupuncture resources and can't find any that discuss speech issues. Are you administering the electronic acupuncture on yourself?

Any additional info would be appreciated.

Tom

[Terry]

I go to a chiropractor and she has about 8 or 9 points on each ear. I'm going this morning and I'll get a better description.

[Terry]

Tom:

I went this morning. Here is the long explanation. This is called Auriculotherapy. Its like reflexology for accupuncture. The patient holds a wand(that completes the circuit) and the Doc uses a pencil-like probe to send a mild shock thru various points on the ear. There is a meter that helps find the exact points.

Here are the points she uses on me:

Shen Med
Autonomic
Point Zero
Spinal Motor Neurons
Endocrine
Medulla Oblongata
Thalamus
Mouth Point
Tongue Point

[gapwedge]

Wow, that's sounds pretty cool Terry! I'll do a bit of research on it - thanks! In the meantime, a few questions if you have time... How long does the session take? After the session, is the improvement to your speech immediate? How significant an improvement do you find it gives you? How long does it last?

Thanks, Tom

[Terry]

Tom:

The therapy lasts about 15 minutes and the results are immediate. It seems to last about 3 days, however the results seem cummulative also.

Take a look at the cool laser treatments also. The results are similar.

[gapwedge]

Sounds good. I'm in New York, so would imagine I'll be able to find a practitioner... hope so... if anyone knows of one near me, please chime in!

Thanks, Tom

[Terry]

Dana:

An update on my treatments with IV Rocephine.
Overall, I feel a little worse than before I started. I sleep a lot more than usual. I feel fatigued a lot. Occasionally I'll have a day where I feel great.

I'm getting a liter IV of Vitamin C every week and a shot of B12. The welchol is starting to kick-in. My herx's are of short duration 3- 4 hours.

I've managed to miss the flu and colds the rest of my family is getting.

How is your dad doing?

[dana]

Hey Terry,
Dad is doing a little better. He has been pretty sick since right before Thanksgiving. He had a horrible cold with hot flashes and was not eating hardly anything at all. He has probably lost 15 pounds in the last two and a half weeks. He just started getting his appetite back yesterday and began eating again. We have been pretty worried about him. But, it looks like he is beginning to climb the upside of the hill finally. I am going to mention the accupuncture idea to him for the speech. (I forgot to mention it before) He did some accupuncture towards the beginning of his illness (before he was diagnosed), but stopped after awhile. He might be interested in starting up again if it could help him talk better. It is getting harder and harder to understand him. Poor guy...it makes you feel so bad for him when you can't understand what he is saying. Anyways, I hope you are feeling well and taking care of yourself. Keep me posted on any changes you find with the rocephine.
Dana

[Terry]

Dana:

Look into Welchol. When I take 2 doses twice a day the Herx are minor the following day. If not then I'm miserable.

It takes about 3 weeks to kick in.

[upila]

Hello,
Can you please tell me if anyone from New England's States reading the forum knows of a Lyme literate doctor-PLEASE.
My father was diagn with ALS a year ago, we just now prevailed to have a Lyme test - came back positive, the neuro can't help (we are used to that!) and told us to look for a Lyme dr. I have been calling, surfing the web and doctors' information it is not as readily availble as one might think for such a prevalent disease in New England.
Thanks you!!!!
Upila

[upila]

Thanks, Terry - I just looked at it, and seems will be spending quite some time there. I have found here the pool of wonderful, helpful people - the same there, too. Can't imagine what we would do without helping one another!
Upila