Paralyzed by Lyme

My sister has been completely paralyzed for over a year. She has been diagnosed with ALS several times but definitely has Lyme, babesia and bartonella.
I have searched these forums to find what people are doing for treatment and you all have supplied me with valuable information and treatment direction for her. I am very grateful.
She has been so courageous and we do see some signs of recovery, but as you are all too well aware, this disease is treacherous.
What I hope to find is people who have gone through this and recovered or are in recovery so that I can relate your stories to her and keep her encouraged.
Thank you for your strengths and spirit.

Artaseret welcome ...i have researched this and have found a few camps . Randy reminder myself and many others have had the wasting and nerve damage that these infections entail ...nerves can heal ...

the real story of dave martz has inpired me to no end ...my friend who is a nurse was dx with als had drop foot ,is now working .i met ellie lobel who was in a wheelchair ,she is traveling . I was dx with adult onset muscular dystrophy and vasculitis i stopped using my cane.a friend in florida tossed his walker after 2 months of bvt ...
The mylien shieth can indeed repair if it is given what it needs ...
so can the brain ...some damage is done but life goes on and we are resiliant beings .

things that have helped stabalize me are iv rocephin pulsed ,bvt ,iv phosphatydlcholine ,iv ala ,iv silver , rife ,parasite treatment,rifampin ,zithromax
and many other herbs ...

a smartport has made treatment easier ...my brain is entact like hawking so i imagine myself when i was well..
bartonella mycoplasma borrielia and bartonella (2×) is what is eating the nerves ...get the bugs at the root and the tree will grow ...

i am in contact with a few who have this extra affliction ,we are a support ..can she type ? Is she on cpap..how is her swallowing ..do you have a good really good llmd (not many are familiar with this severity of lyme)
Dave martz said you need to herx to kill the bugs but not so hard as to do more nerve damage ...i have the protocol from his old clinic and his protoge if you want ..?

a few more questions ? What meds is she on what has her treatmwnt been and how are your resources ? Is she willing to get out of hell by going through it to return to the living ? What part of the country are you in? And bless you for being a sibling who cares enough to post and research if we can help in anyway please ask

Post Edited (bluelyme) : 2/6/2017 12:44:01 AM (GMT-7)

Thank you for all the caring response.

My sister had an LLMD in MA but we live in CT and it became impossible for her to keep making the trip once a month for a doc who didn't really seem very positive about recovery. Currently, her PCP pretty much gives her what we ask for.

I would love to find an LLMD here familiar with this severe a case but it seems an impossible task. All help is greatly appreciated.

The paralysis really took hold Sept 2015 and is complete except for head movement, bathroom capabilities and some new leg and arm movement which we encourage with daily passive exercise. The brain fog she did have passed early on and she is quite aware - which she often says may not be a plus. She has a great sense of humor and we do manage to find things to laugh about.

She has a feeding tube as she cannot swallow and oxygen which she uses most every night.
She's been on Ceftriaxone since 3/16... Was on Rifampen 600mg from 4/16 until she started azithromycin in January/17. She also went on Atovaquone in Jan but the coughing side effect was horrendous.

Current Daily Meds/Supplements:
Ceftriaxone IV Infusion 3g daily
Azithromycin 250mg
Fluconazole 200mg (Once a week)
8ml Glutathione
Ursodiol 300mg 2x daily
Probiotic 3mg 3x daily
Cranberry Supplement 400mg
Biosil 5 drops 2x daily
Vitamin C 2000mg
Vitamin D3 w/K 2kIU
Vitamin A 5kIU
Vitamin B6 100mg
Vitamin B12 500mcg
Magnesium 750mg
Zolpidem Tartrate 10mg
Lidocaine Patch pain

Thank you once again... I'll be reading her the success stories!

Your sister is lucky to have your help and support. Don't forget to take care of yourself.

Just wanted to follow up with a couple links:


/ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/





www.merckmanuals.com/en-ca/professional/nutritional-disorders/vitamin-deficiency,-dependency,-and-toxicity/vitamin-a

Do you know Dr. Martz' story?

ALS misdiagnosis. Treated for lyme (after a few negative lab results, then did Igenex lab)

/www.youtube.com/watch?v=UY9FdULDV6M


Also, the Under Our skin documentary, and the sequel Emergence.

They can be rented online.

I like the weaning approach.

THE Dr. J. does it that way...

Have you spoken with creek trail...she says ivig is necessary. ..i am using bvt as immune booster with reishi cats claw cordyceps and wheat grass..
imo the encysted lyme will come out when threat of abx is removed..
also i believe bartonella and mycoplasma is the cause of nerve damage

just curious was there a event or medication that triggered the als symptoms ?

Also in my opinion immune sx helps to keep ebv and other thing down but with intercellular systemic infections wbc are not able to fight this super pathogen...microscopy and immuno globulin test as well as nk test cd4 cd57 can show you where she is at...

Post Edited (bluelyme) : 2/13/2017 10:51:39 PM (GMT-7)

Have you seen Mindy at Creek Trail?
I have met two guys with ALS that have stabilized it-both aggressively cleaned out their dental materials from their mouth. Which when I asked Dr Rau and Yu is what both said needed to be done asap.
Both of the gentlemen in my small universe saw a biological dds and have stabilized.
In Dr. Yu's public web sight you can find his article on Ron who has als-it may be worth a read
best of luck

Hello ...
today was a terrible day for my poor sister. She is having an excessive amount of thick foamy saliva and since she cannot swallow she coughs and chokes a lot. Oxygen is about all that helps.
Unfortunately we also tried a hoyer lift and it didn't work well (it's a loaner) so that just made matters worse. As if this horrid disease isn't enough.
To answer bluelyme.. there was no trigger for the ALS paralysis (except for the Lyme of course). Her symptoms followed the progression of ALS to a T except that it only took a year for her to become completely paralyzed.
We continue our search for an LLMD who can help. I've contacted several but, so far, no one has experience with this level of the disease. I have not heard back from Creek trail.
And so we battle on ...

btw, one question artaseret, does she have a positive lyme disease test ?

mpost... you may think us delusional, but we don't accept that my sister now has ALS and will not recover.

She has tested positive for lyme, bartonella and babesia and simply put, we believe she will recover once we kill the bugs, and rebuild her system.

If we're wrong, she'll die.

So, we will continue to believe and will try everything we possibly can to help her heal.

fhttp://www.preventionandhealing.com/articles/Time-to-Heal-at-Last-ALS-amyotrophic-lateral-sclerosis.pdf


I have met this guy several times at Dr. Yu place getting IVs. Yesterday Dr Yu told me that he is writing a book about his road with als. He is wonderful and uplifting. He seems to have stabilized his als-thought this might be an interesting read