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» LymeNet Flash » Questions and Discussion » Medical Questions » Need advice about ALS & Lyme

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Author Topic: Need advice about ALS & Lyme
hopingandpraying
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An acquaintance's husband has declined severely in his health. He was diagnosed with Lyme three years or so ago. Now he has a feeding tube, trach, and was diagnosed with ALS.

He has been under the care of a LLMD from what I gather and was treated with IV Rocephin (don't know what else he was treated with). I also don't know about any co-infections.

His wife just found out not long ago that she also has Lyme. What's even sadder is they have a young adult son who is autistic! When it rains, it pours!!!

I want to help but need some more advice. What should they do? Should they try to get him flown via some kind of med flight to one of the top LLMDs or is it just too late?

Anything will be greatly appreciated. Thanks.

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
droid1226
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This subject makes me so sad.

This past yr I've talked to the husband of a woman who my LLMD has been treating for ALS/lyme. He's a basketcase at this point as you can imagine. She had zero movement in any extremities except her one arm which some power was given back to by a series of 4 IV antibiotics. That was about as good as it got.

My Dr. also treated with nasal oxytocin. Not sure if that was symptomatic or causal treatment.

My Dr. asked if I would speak to him because I had been seeing many neurologists up to the point of testing positive for lyme in 2011. I was given the advice that ALS is something that I should prepare for & consider considering my grandfather had it & also my 39 yr old cousin has it. My right leg lost all power & was not moving & atrophied in a matter of 2 months. All I can tell you is that IV levaquin reversed & restored function in that leg, Ceftrexione did nothing.

I did NOT want to take levaquin because of all the terrible stuff that it does to some people but I think when you are desperate enough, most people would try anything.

From that point on, I honestly believe Levaquin saved my life. I always wonder what would happen if my cousin tried it but he's not willing even though he had lyme as a kid.

I can give you the information of that person if you'd like to talk to him possibly. Or they could talk to them. I haven't spoken with the husband in a few months so I'm guessing it's either really good news or not so good news as things were progressing rather quickly.

Sounds like the same situation. From my own experience, if I ever, ever start showing any foot drop or extremity weakness again I'm immediately going back on IV levaquin.

Mainstream medicine is truly heartless as the ALS center here at the Cleveland hospital treats & diagnoses ALS as if you just had a cold. Very systematic & like you're a sack of meat. I've known 2 people who've died from this horrific disease & riluzole didn't work for either.

I'd say go for broke. Nothing to lose. Idk how old this man is that you're speaking of but the woman who I'm speaking of above was in her late 70s so that may have factored in the family's decision making process.

All the best. Hope this is somehow resolved as this hits very close to home.

Please PM me if there's anything I can do.

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Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Tincup
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Sorry to hear both your stories above. Droid, it makes me sad too. Very sad.

You will need an expert or it could make things worse. Herxes, well they can be very bad in this situation.

https://sites.google.com/site/marylandlyme/jarisch-herxheimer-herx

They will need to be very careful with antibiotic dosing, in fact pulsing rather than continuous dosing would need to be done with careful monitoring throughout.

Here is some ALS/Lyme info that may be of interest.

https://sites.google.com/site/marylandlyme/lyme/als--lou-gehrigs

Also, some get benefit from IV gamma globulin, and from what I've been told proper detoxing is important too.

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www.DrJonesKids.org
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Posts: 20352 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Not all cases of ALS can be traced to lyme, obviously, but a good many misdiagnoses have been made.

Documentary: Under Our Skin -

- one of the patients featured in that is a doctor who had been misdiagnosed with ALS -- when he was correctly diagnosed with borellia & babesia, and got substantial treatment, he recovered to a remarkable degree.

There are some medical articles about this doctor's experience, too.

"Lyme Induced Autism" website also important to consider for their son.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/119754

Topic: ALS / Lyme
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
droid1226
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The positive side to this is that Dr. H has reversed absolute ALS that was triggered by lyme. I remember a story in his book where the guy couldn't walk & had bad bulbar symptoms (which the next step is a trach)

Also another positive note for lyme patients is that of all of Dr H patients, his subset of ALS patients is no higher in Lyme patients than it is in the national population. So lyme may trigger it, but so does genetics, sports players, etc...anything that gets to that part of the brain or myelin sheath.

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Posts: 1181 | From ohio | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Thank you so much to all for posting - I really appreciate it. Will research some more and pass on the very helpful information you all gave.

The man I asked about is only in his 50s, supposed to be in the prime of his life! Very, very sad.

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymieloo
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Hopingandpraying, I can't offer any advice since I'm so new to this myself. I can and will however, send up prayers for your friends. And bless you for caring so much and doing what you can to help.

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Bless the Lord, oh my soul. -- Psalm 103

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Phoiph
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Hopingandpraying & droid...

I am hoping you both consider mild hyperbaric as a therapy for ALS.

I have a neurologist friend who successfully treats many neurological conditions, including ALS, with mHBOT. She also prescribes specific micronutrients/nutraceuticals in combination.

There are success stories out there...here's an example:

http://eripaul-ivil.tripod.com/theamericanassociationforhyperbaricawareness/id3.html

It is frustrating to me how little known and underutilized this therapy is, especially when I know first hand from my own recovery from neuro-Lyme how effective it is.

The right protocol is key...

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Robin123
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Dr M in Colorado reversed his ALS Lyme with antibiotics, I think. His case is discussed in Pam Weintraub's book, "Cure Unknown."
Posts: 13041 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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These are all excellent suggestions.

Once again, from the bottom of my heart...thank you, thank you, thank you to all who posted or sent me a pm (keep them coming, if you have any more information).

Lymieloo - prayers are the best medicine for anything! Your kind words really touched my heart and it truly is a privilege to help others.

Posts: 8824 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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