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Bluelyme and/or others Help plz

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Posted 1/10/2019 9:23 PM (GMT -5)
I’ve been browsing this forum for examples of people diagnosed with ALS and then subsequently found to have a positive Lyme test. I believe user Bluelyme is on forum regular who has this diagnosis history. I’m looking for advice for a friend who is not doing well at all.

A year and half ago she began falling, feeling weak, numbness, etc. Two separate hospital stays resulted in first a diagnosis of stiff person syndrome (due to high anti-GAD numbers) then a few months later was rediagnosed with ALS. Both hospital stays, extensive testing was done including for Lyme disease. One facility was a university hospital and very thorough.

Over the months, she has loss use of every limb, no longer has much of a grasp, cannot lift her arms, cannot walk, Speech poor, swallow weak, breathing starting to decline, etc. A very rapid course of deterioration. Her family has always considered Lyme as a real possibility. They sent her urine (after massage) to DNA connections. They got a result back today showing a positive result for Borrelia miyamotoi NPS.

Please, can anyone offer advice or suggestions? Would antibiotics be too challenging for her? Can she stop the progression? Can you recommend a Lyme specialist? What would you do with these results? Thanks to any and all who can weigh in!
Posted 1/10/2019 10:06 PM (GMT -5)

Fisherdog said...
I’ve been browsing this forum for examples of people diagnosed with ALS and then subsequently found to have a positive Lyme test. I believe user Bluelyme is on forum regular who has this diagnosis history. I’m looking for advice for a friend who is not doing well at all.

A year and half ago she began falling, feeling weak, numbness, etc. Two separate hospital stays resulted in first a diagnosis of stiff person syndrome (due to high anti-GAD numbers) then a few months later was rediagnosed with ALS. Both hospital stays, extensive testing was done including for Lyme disease. One facility was a university hospital and very thorough.

Over the months, she has loss use of every limb, no longer has much of a grasp, cannot lift her arms, cannot walk, Speech poor, swallow weak, breathing starting to decline, etc. A very rapid course of deterioration. Her family has always considered Lyme as a real possibility. They sent her urine (after massage) to DNA connections. They got a result back today showing a positive result for Borrelia miyamotoi NPS.

Please, can anyone offer advice or suggestions? Would antibiotics be too challenging for her? Can she stop the progression? Can you recommend a Lyme specialist? What would you do with these results? Thanks to any and all who can weigh in!

Hi Fisherdog - welcome!

It’s too bad that she didn’t get to a LLMD a year and a half ago before symptoms progressed so dramatically. So sad!

I urge you to suggest a LLMD who has extensive experience with not only treating Lyme disease but also Lyme induced ALS.
It will take a miracle - and she will most likely need IV treatment.
The LLMD I see said in an interview that he can offer some hope for ALS patients if they can still swallow.
If it were my loved one - I would give it a shot - so no regrets - miracles do happen. It will be costly though - thousands of $$... BUT I think they will know within a couple of months if it is working and whether or not to continue.

Send me an email if you want the contact info of my LLMD. I can fill you in with more details too.
He is one of the most experienced llmd’s there is.

What area of the U.S. is she in? (NE...NW...SW.... etc)
Posted 1/10/2019 10:15 PM (GMT -5)
Thank you - email sent! My friend can still swallow, albeit carefully.
Posted 1/10/2019 10:15 PM (GMT -5)
I’m so sorry for your friend.

Google dr dave martz. He had lyme ALS and was able to stop and reverse some but not all.

I think one of the best places to try for this situation is Jemsek Clinic in DC. IV antibiotics would be the route to go - especially if having trouble swallowing. I think they will only treat if there is enough function left.

I lost a family member to lyme ALS recently. I feel getting treatment quickly is very important when it goes this direction. I’ll be rooting for your friend.

Post Edited (k07) : 1/10/2019 8:18:11 PM (GMT-7)

Posted 1/10/2019 10:21 PM (GMT -5)
Thank you for the advice- I will look up Dr Dave Martz. I have been researching Dr J in DC!

I’m sorry to hear about the loss of your loved one. Do you think all cases of ALS are ultimately caused by Lyme? This is all new to me, but I’m guessing the neurologists treating ALS are not in agreement with Lyme treatments or testing like the dna connections lab does?
Posted 1/10/2019 11:00 PM (GMT -5)

Fisherdog said...
Thank you for the advice- I will look up Dr Dave Martz. I have been researching Dr J in DC!

I’m sorry to hear about the loss of your loved one. Do you think all cases of ALS are ultimately caused by Lyme? This is all new to me, but I’m guessing the neurologists treating ALS are not in agreement with Lyme treatments or testing like the dna connections lab does?

Dr J is who I see and recommend.

Right - highly unlikely that the neurologist would consider Lyme as the cause.

Here’s an interview with dr J

https://m.youtube.com/watch?v=wde0l-5ykvi
Posted 1/10/2019 11:05 PM (GMT -5)
Thx girlie!
Posted 1/10/2019 11:13 PM (GMT -5)
Dr Martz - speaking about his Lyme/als journey

https://m.youtube.com/watch?v=uy9fduldv6m
Posted 1/10/2019 11:36 PM (GMT -5)
Hello llmd CC in mo treats this and has had success girlie or I can give you info on llmd cc
Posted 1/11/2019 7:58 AM (GMT -5)

Fisherdog said...
Thank you for the advice- I will look up Dr Dave Martz. I have been researching Dr J in DC!

I’m sorry to hear about the loss of your loved one. Do you think all cases of ALS are ultimately caused by Lyme? This is all new to me, but I’m guessing the neurologists treating ALS are not in agreement with Lyme treatments or testing like the dna connections lab does?

I’m not sure. I would venture a guess that in most cases it’s multiple factors -the perfect storm and genetics that lean that way. In my family’s case it was the tick bite, then flu shot, amalgams, yeast issues. No antibiotics till the progression got pretty scary. And then the treatment was not really ideal - monotherapy. Did not see a good LLMD.

Do you know if friend has amalgams? If you read about mercury poisoning it is similar to the beginnings of ALS.

Post Edited (k07) : 1/11/2019 6:02:22 AM (GMT-7)

Posted 1/11/2019 8:44 AM (GMT -5)
I don't think all cases of ALS are lyme-related. But I'd suspect it can be an important factor in a subset of cases, and likely other infections as well. Good idea to look into other angles like metals which k07 mentions and also environmental toxins (pesticides and volatile organic compounds, this is something Dr Horowitz mentions in his book as a common factor in the ALS patients he's seen). And like Girlie said, I also think these conditions usually manifest from a perfect storm of cofactors.

May also want to explore Dr Alfred Miller's interviews, he talks about lyme and ALS. His daughter-in-law had ALS connected to lyme: https:// https://canlyme.com/2017/05/03/listen-to-retired-rheumatologist-dr-al-miller-discuss-lyme-disease-as-relates-to-als-and-other-diagnoses/

If your friend can, seeing Dr J for evaluation would be a good thing to try imo.
Posted 1/11/2019 10:17 AM (GMT -5)
Thank you k07, donjr, and sebreg for your replies and various links and suggestions. I’ve looked up CC in MO and will definitely research amalgams (never heard of before) and watch the video link for Dr Alfred Miller. Thx again everyone.
Posted 1/11/2019 10:38 AM (GMT -5)

Fisherdog said...
Thank you k07, donjr, and sebreg for your replies and various links and suggestions. I’ve looked up CC in MO and will definitely research amalgams (never heard of before) and watch the video link for Dr Alfred Miller. Thx again everyone.

Amalgams are the “silver” fillings in teeth. They are actually 50% mercury.
Posted 1/11/2019 3:33 PM (GMT -5)
Hi fisherdog,
What a diligent friend you are to find us on her behalf ..ya i hear miyamoto is a highly virulent spirochete... Lots of sound advice above . Feel free to pm me over on lymenet forum. Dr martz had a clinic in co spgs ,his nurse may still work there. When i asked for their als protocol its conservatively aggressive with iv abx and orals . Hitting bart 1st and hard is essential . There is a e book called "eric is winning . He used ozone . After talking with a nurse who also had this death dx she choose bvt and hbot ....the thing is to herx hard but not too hard to damage any neighboring cells ...i used many modalities to clear 9 bad pathogens some of which were mycoplasma ,cpn , bartonella ,toxoplasmosis, hpyori , ....i read this article on how they think it a retrovirus that gets switched on . Then i read how bee venom decimated aids cells in vitro...can she travel ..? Was there a trigger medication or trauma? Whats she on now and can she finacially and physically handle it . Hoping she has the will to fight. This guy just used supps and tinidazole to slow his progression http://www.shackel.org/mytheory.html
Posted 1/11/2019 3:49 PM (GMT -5)
I just had an email from another forum member who's friend also had the ALS diagnosis...and I recommended Dr. J's clinic.

They just had their first consult...and the J team said he does not have ALS. Both Dr. J and the NP said they have to be careful with treating...too aggressive could cause damage.
Posted 1/12/2019 5:45 PM (GMT -5)
And not aggressive enough and the nerve damage continues ....i hope she can find some iv rocephin stat ! Do keep us posted plz
Posted 1/12/2019 6:38 PM (GMT -5)
I agree with Dr J's approach. With advanced cases of these neuro-conditions I've heard from multiple well-regarded llmds that you have to start antimicrobials conservatively because if you overdo it the initial herxes can end up causing severe damage. It's a balancing act.
Posted 1/12/2019 6:41 PM (GMT -5)
http://www.preventionandhealing.com/articles/ALS-Patient-Unexpected-Journey-Patient-as-My-Teacher.pdf


This article is about Ron who beat als and wrote a book about it. I believe he even gives out his email in this article. I have met him at Dr Yu and a kinder person you will never meet. You may get his book or even get I tough with ron
Posted 1/12/2019 7:08 PM (GMT -5)

bluelyme said...
And not aggressive enough and the nerve damage continues ....i hope she can find some iv rocephin stat ! Do keep us posted plz

Dr J likely is likely one of the most (if not THE most) experienced LLMD in treating those with ALS....he's been at this a long time.
He's treated a lot of patients with IV abx...and many with ALS....so she would be in good hands...IMO.

The problem is the $$$$ cost.
Posted 1/12/2019 11:28 PM (GMT -5)
Bluelyme is right about the retrovirus being switched on. I was just talking with Dr J the other day during my follow up appointment and he said he is researching using anti retroviral drugs for ALS patients along with ABX. So please consider something to hit bacteria and retroviruses in ALS. (Bee venom or Dr. K's anti retroviral protocol should be sufficient.
Posted 1/12/2019 11:35 PM (GMT -5)
Interesting - since Dr J did many years of hiv treatment prior to Lyme.

Sheeks (or anyone else) - what drugs are we talking about ?
Posted 1/13/2019 1:04 AM (GMT -5)
I have no clue, but I'd suspect the majority of anti retrovirus drugs on the market are HIV drugs. So google search HIV antiretroviral treatments and you probably have a winner. Dr K also has an herbal protocol for retroviruses and Beyond Balance has IMN-R to target retroviruses.
Posted 1/16/2019 12:22 AM (GMT -5)
Bluelyme and all others- thank you, thank you, thank you! What a helpful and kind community. I’ve been offline for a couple of days- and just now thought to check back in to see if others weighed in.

We’ve called several of the doctors listed in this thread. Travel is going to be challenging, but I’m hopeful we can get my friend to see a specialist. I will share all the information about treatments and the links from above with her.

I’ll try to keep popping in to learn more from this forum. Again, I thank you all. God bless!
Posted 1/16/2019 12:27 AM (GMT -5)
Btw- Bluelyme you asked about a trigger medication or trauma. My understanding is that she had untreated thyroid issues shortly before onset (sounds like they were signicantly skewed numbers) and also a minor back injury - which did not seem concerning when it happened.

She’s 45 years old and this has come out of nowhere. I’m sure you all understand!
Posted 1/16/2019 12:19 PM (GMT -5)

Girlie said...
Interesting - since Dr J did many years of hiv treatment prior to Lyme.

Sheeks (or anyone else) - what drugs are we talking about ?

Suramin is the drug Dr. K has used for autistic treatment related to retrovirus leading to cell danger response stuck “on”. I tried homeopathic suramin for a bit. Not sure I was taking the right dosage. He also likes chinese skullcap, cistus tea and some other stuff.
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