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Old 11-03-2005, 01:03 AM #1 (permalink)
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Default CONNECTION BETWEEN ALS & LYME'S?

my aunt has been diagnosed w/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?
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Old 11-03-2005, 09:21 AM #2 (permalink)
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Hi. Welcome to our site. Has your aunt been tested for Lyme disease? Where are you located ? From what I have read there are only 2 labs in the U.S. that do accurate testing.
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Old 11-03-2005, 11:13 AM #3 (permalink)
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Default still looking for more...i wont give up

we are in wisconsin. i have done extensive research on this disease & have found that there are clusters of als/lymes patients in one certain part of our state.

raises some questions with me.

i do believe in my heart that this is lymes. i just wish they would find it in the testings. they wont start treating you for it without the results showing positive.

sad in wisconsin

p.s. do you know where the accurate testings can be done?
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Old 11-04-2005, 08:36 AM #4 (permalink)
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Default still looking for more...i wont give up

id be curious to find out how many people in northern wisconsin have any disease having the same symptoms...als, ms, lymes, parkinsons, etc.....these people all might have the same thing & just dont know it
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Old 11-13-2005, 05:12 PM #5 (permalink)
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Default ALS/Lyme

I agree with you about the ALS/Lyme connection. My husband has both and has been treated with IV Rocephin and oral Zithromax. His doctor has a Tick-Borne Disease Center in New Jersey and generally does a series of up to 20 Lyme tests seeking a positive. He also tests extensively after the treatment is done!

It is generally hard to get a positive if you have had Lyme for a long time and the treatment is often long and difficult. It is certainly worth it, though!

We are just now reading about the likelihood of co-infections, especially Babesia, and the possible need for an antimalarial in addition to the antibiotics. This is, I think, the theory of Dr. William Harvey of Texas who is now retired and had great success treating patients with ALS and Lyme!

Let us know what you find out and what treatment, if any, you pursue!

Best of luck!

Barb
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Old 11-14-2005, 01:07 AM #6 (permalink)
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Default to al & everyone who wants to be tested for lymes

al...you spoke of 2 tests. are you referring to IGENEX & BOWEN?

after all of the reading i have been doing for over a year now...it seems that these are the only accurate lymes testing laboratories in the US.

i phoned both laboratories who gave me names of physicians in our area that use their kits. from what i understand, most physicians cannot use them as they work for a hospital that has their own laboratory.

such is my aunts case...she was tested at a hospital that has their own laboratory. these hospital laboratories are not "tick infectious disease" laboratories.

i guess its like taking you child to a family practitioner instead of a pediatrician?

i sure hope that everyone who is diagnosed with als, parkinsons, ms, & any other related disease contact these 2 laboratories for a lymes test...

maybe then we can get further in our findings & do something to beat this good luck everyone & keep praying - much love, denise
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Old 11-17-2005, 07:56 AM #7 (permalink)
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Make an appt with Dr. Gregory Bach just outside of Philadelphia in Colmar, PA. People come from all over the world to see him.

My mother was diagnosed with ALS and we went to Dr. Bach last week. He has already started her on Rocephin and Zithromax without waiting for the lab results. He is treating her for Lyme based on her clinical symptoms. She had the bullseye rash on her leg a couple years ago that she ignored. Not all Lyme sufferers get the rash though.

We also ran into a family friend who was diagnosed with ALS and is using a walker and has speech impairment (his symptoms are much further along than my mother's). He has been seeing Dr. Bach for about 6 weeks and is showing improvement after starting antibiotic treatment for Lyme. His Lyme tests came back positive.

Please give Dr. Bach a call (215) 997-9421

Last edited by David : 03-27-2006 at 05:08 PM
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Old 11-20-2005, 10:05 AM #8 (permalink)
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My dad was told he had ALS, and we proceeded to have him tested at the IGENEX lab. He tested positive for Lymes there. He has been receiving treatments for the Lymes since June, and has made some progress. His symptoms were with this speech, and I do think his speech has improved some. However, he has continued with some of the ALS symptoms too. For example, he still has choking episodes, he has started having some twiching in his arms, he is able to put more words together when talking, but his voice is weaker, etc. I truly think there is a connection between the Lymes and ALS. My personal belief is that the untreated Lymes is what brought on my dad's ALS symptoms. Some doctors think that ALS is the end session of Lymes disease. All in all, it has been a crazy year. I do have to say though, since my dad has began the treatments for the Lymes, his whole attitude has changed. He was going through some depression before, and now it is if he has some hope and is much more positive. If the only thing the Lymes treatments gave my dad was a positive outlook on this, and keeping himself active, then it is worth it.
Dana
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Old 11-23-2005, 12:09 AM #9 (permalink)
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Default Re:

what are they treating your dad with? im glad he seems to be improving. he is lucky to have you searching for answers i too believe that lymes & als are affiliated. i may have my aunt start on the salt/vitamin c protocol. i am still looking into it though so i havent said anything to the family yet. have you read/heard anything about this protocol?

take care & keep informed! much love, denise



Quote:
My dad was told he had ALS, and we proceeded to have him tested at the IGENEX lab. He tested positive for Lymes there. He has been receiving treatments for the Lymes since June, and has made some progress. His symptoms were with this speech, and I do think his speech has improved some. However, he has continued with some of the ALS symptoms too. For example, he still has choking episodes, he has started having some twiching in his arms, he is able to put more words together when talking, but his voice is weaker, etc. I truly think there is a connection between the Lymes and ALS. My personal belief is that the untreated Lymes is what brought on my dad's ALS symptoms. Some doctors think that ALS is the end session of Lymes disease. All in all, it has been a crazy year. I do have to say though, since my dad has began the treatments for the Lymes, his whole attitude has changed. He was going through some depression before, and now it is if he has some hope and is much more positive. If the only thing the Lymes treatments gave my dad was a positive outlook on this, and keeping himself active, then it is worth it.
Dana

Last edited by David : 03-27-2006 at 05:08 PM
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Old 11-23-2005, 12:33 AM #10 (permalink)
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Default Re:

did your mother & family friend go through a detoxifying stage first? have they herxed at all since starting the antibiotics?

my aunt was diagnosed with als & i believe she may have lymes. she was just tested last monday by a llmd that uses the igenex kits.

i am hoping her results come back positive for lymes. if they do not, i believe he is going to start her on the 5 day antibiotics & test again. i am hoping he will be able to help her.

i am hoping together we can find help for all of us! dont give up!

Last edited by David : 03-08-2006 at 01:06 AM
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Old 11-23-2005, 04:50 PM #11 (permalink)
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Hi Denise,
My dad is on an antibiotic called rocephine which is administered through an iv tube in his chest. He does this for about half an hour in the morning, and half an hour at night, Monday through Thursday. On Friday through Sunday, he takes oral medications instead of the iv antibiotics. I'm not completely sure on all the names of the meds. He has been taking all of this medication since June. The doctors do not know how long they will keep him on all of the medication either. It's kind of trial and error process. What I have found is that the doctors do not really know a whole lot about these diseases (ALS/Lymes). It is really unfortunate. I just continue to pray for a cure, and that my dad will get better. As far as the salt/vitamin c protocol, I haven't heard of it. What is it exactly, and how does it help?
Dana
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Old 11-23-2005, 08:25 PM #12 (permalink)
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Default Re:

hi dana,

i was very lucky & was able to speak to the owner just a few minutes ago. i was able to access her phone number & call her.

she was very helpful & thinks i should start my aunt on the salt & vitamin c right away. she is also very sweet & very knowledgable.

she has had lymes for 17 years & doesnt believe in the medical profession anymore. i cant say i blame her. im loosing faith as well.

im going to be seeing my family in a couple weeks & we are all going to sit down & talk about this. i want my aunt to start this treatment immediately. i am excited to start it & cant wait.

i have read through the whole lymephotos website, so if you have any questions, please feel free to ask. when i talked to the owner of the site, she game me a little extra info that might be helpful as well.

im so glad i talked to her. i am very confident about this!
talk to you soon...much love, denise

Last edited by David : 03-08-2006 at 01:07 AM
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Old 01-29-2006, 12:00 PM #13 (permalink)
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how is your dad doing dana? by the way, what state are you guys in?

Last edited by David : 03-08-2006 at 01:07 AM
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Old 01-29-2006, 12:01 PM #14 (permalink)
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how is your dad doing dana? by the way, what state are you guys in?

Last edited by David : 03-27-2006 at 05:08 PM
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Old 01-29-2006, 12:07 PM #15 (permalink)
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Default Re: ALS/Lyme

how far progressed was your husband before starting treatment? how is he doing?

my aunt just started treatment yesterday as she finally has a cdc reportable case of lyme disease.

she had a pic line put in & started rocephin. she is also taking a few oral antibiotics.

Quote:
I agree with you about the ALS/Lyme connection. My husband has both and has been treated with IV Rocephin and oral Zithromax. His doctor has a Tick-Borne Disease Center in New Jersey and generally does a series of up to 20 Lyme tests seeking a positive. He also tests extensively after the treatment is done!

It is generally hard to get a positive if you have had Lyme for a long time and the treatment is often long and difficult. It is certainly worth it, though!

We are just now reading about the likelihood of co-infections, especially Babesia, and the possible need for an antimalarial in addition to the antibiotics. This is, I think, the theory of Dr. William Harvey of Texas who is now retired and had great success treating patients with ALS and Lyme!
Barb

Last edited by David : 03-27-2006 at 05:09 PM
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