Advice please

Hi All. I’m very confused with knowing how to proceed. Any insight would be appreciated. Three years ago I presented with classic lyme symptoms but I wasn’t informed and no doctor tested me. I was tested for everything but lyme. Fast forward to the last 18 months and my only symptoms are leaky gut, occasional swallowing issues, muscle atrophy and progressive muscle weakness. I was dx’d by a functional doc with ALS a year ago, but to date I have seen four neurologists and have had five emgs/ncvs and no neurologist thinks ALS. However two of them had said maybe...but it would be a slow progression. In the past few months I’ve had labs come back from igenex, galaxy, lab Corp, MDL, and Accutix, and my doc called and said I’m positive for Babs, Bart, mycoplasma, Bb and Borrelia Miyamotoi. He said my Bart titers are very high through both Galaxy and MDL, and the Miyamotoi is the highest he’s ever seen. So clearly I’m dealing with infections. He wants to start IV Zithromax and IV Rocephin at 5x a week for a minimum of six weeks to see if I respond in any way. I’ve read so much and this is my greatest fear/caution with abx. It seems so many testimonials I’ve read about ALS/Lyme the patient reports heightened progression of muscle atrophy/weakness once abx was started. Has anyone on this forum experienced that, read about that, or have any insight? I know I have to do something, I feel like I’m so scared I’m going to make the wrong decision. I asked about doing Zhang or Buhner and he told me he thinks I’m too advanced to go the herbal route. Please inform me or share your opinions. I’d be go grateful. Thank you for reading.

While I don’t have an als diagnosis - I did have muscle atrophy occur early on with this disease.
Treatment did not make it worse.

With the help of a good PT and being diligent with exercises I have regained a lot of my strength back.

My upper left side is still weaker than it is but definitely much better.

The neurologist ruled out ALS in my case.

I hope you have a LLMD that is very experienced with treating someone with an ALS diagnosis.
Dr J mentioned in a video that you shouldnt treat too aggressively at first.

Kokopuff7 said...
Girlie, would you happen to have the link to that video with Dr J discussing this? I tried to do a search and can not find anything. Could be that I am on work computer.

I will look for it and post it here.

thank you Girlie!!!

Girlie said...
Dr J mentioned in a video that you can’t get too aggressive when first treating

This could be read two ways. You mean they *shouldn't* be too aggressive at first, right?

Having had the death sentence of als i understand the fear and urgency...it was a als dx nurse that told me it was lyme and about bvt ...i did do some iv antibiotics after some major nerve damage had already occurred ...but clinical doses of zhang herbs ,daily rife and bvt is what got me well again ...no drop leg, no neuropathy no bone pain and no death in 2-5 years ....
David martz md has trained a lady who told me like this. ..were special cases, we need to herx hard enough to get them out of the nerves but not herx too hard to cause any more damage .. one theory i have is few days of bactrim killed the bart/myco really quik in my nerve bundles and the dieoff is what caused the damage and subsequent wasting . .i was so scared to install a port for rocephin as a result. ..ya cowden aint gunna cut it but abx is not the only way. Let me know if i can help .glad u found us welcome ...
Her protocol is roceph ,zith, tindamax til plateau the treat bart and babs ...
I did 4g of roceph pulsing 3days a week to start....

Post Edited (bluelyme) : 11/10/2018 10:55:19 AM (GMT-7)

pilatesgal said...
Thank you everyone for your input. I am trying to digest everyone's suggestions. I am usually quite decisive and at times even impulsive when I want to get something done. However, I have never in my life been so perplexed about what direction to take. I know I need to do something. I know my body is giving this fight all it has, but it needs help. One hour I am convinced I am doing to the PICC line, and the next I am convinced that will accelerate the ALS like symptoms I have. I spoke with the Zhang clinic yesterday and they are convinced I need to address my digestive issues before any therapy will really work. So, I ordered some of those herbs and will give focus to my gut. I listened to that podcast by Dr. J, and was setback when he mentioned ALS and how it seemed he didn't really feel overly confident that his protocol worked. I would still be in the early presentation which is what he says would be necessary to even try the protocol, but I didn't finish the podcast convinced that was my way to go. I guess I need to just take a step of faith in one direction or another. Can someone who does BVT please point me in the direction of understanding that protocol? I have joined a FB group, but is there a very easy to understand site defining methodology? And is it possible to travel while doing BVT? Or does this therapy require one to be home bound? Thank you everyone

Dr. J stressed catching it early - if I'm remembering correctly - and there were certain factors that were pertinent ie ability to swallow..etc.

But, he would probably have the most success treating ALS - based on the fact he has been treating lyme a very long time..ie closet 20 years now? So, he would have seen a lot of ALS cases.
He is very knowledgeable in tick-borne illness treatment.

I am not trying to sway you away from BVT...or other alternative treatments...but if you do choose the LLMD route...please make sure you choose someone who is very experienced...not only in lyme, but in lyme induced ALS treatment.

And, please keep us posted - no matter what your decision is...we're here to support you.