posted
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: 8982 | From Illinois | Registered: May 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
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.
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: ALS / Lyme -
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
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.
posted
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: 8982 | From Illinois | Registered: May 2006
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posted
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.
-------------------- Bless the Lord, oh my soul. -- Psalm 103 Posts: 102 | From WA | Registered: May 2015
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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:
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...
Posts: 1888 | From Earth | Registered: Jul 2013
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posted
Dr M in Colorado reversed his ALS Lyme with antibiotics, I think. His case is discussed in Pam Weintraub's book, "Cure Unknown."
Posts: 13117 | From San Francisco | Registered: May 2006
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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: 8982 | From Illinois | Registered: May 2006
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