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Feel like I’m dying...LLMD has become non-responsive

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Posted 1/28/2020 9:22 PM (GMT 0)
Yes to the cold hands and feet. It's more neurological shenanigans.
Posted 1/28/2020 10:48 PM (GMT 0)

HumanConclusion said...
The other new thing that is weirding me out is my feet and hands have been getting super cold and difficult to warm up. Not always but daily now for about a week. Anyone else had this?

Yes, I do.

It's odd because my husband has always had cold feet and was envious about my warm feet.
Now with these infections, my feet are always cold...in fact I was shopping with a friend and I ended up buying some very warm, fluffy slippers. I have never worn slippers (and didn't even own a pair)
My hands tend to get cold too.
Posted 1/30/2020 2:00 AM (GMT 0)
My understanding is that cold hands and feet are symptoms of Babesia. Babesia infects the red blood cells and it affects your circulation. My feet were ice cold for months. And sometimes my entire legs. Maybe it's part of the babesia herx. (This is my limited understanding).
Posted 1/30/2020 2:31 AM (GMT 0)
Could be - I did just come out of a babesia flare up. It's weird, parts of me are warm and parts are cold in random areas all over my body.
Posted 2/6/2020 5:44 AM (GMT 0)

HumanConclusion said...

The other new thing that is weirding me out is my feet and hands have been getting super cold and difficult to warm up. Not always but daily now for about a week. Anyone else had this?

Yes, HumanConclusion my feet have been getting unusually cold more often now. It's the usual neuropathy I guess, and could be Babesia.
Posted 3/31/2020 3:36 PM (GMT 0)
I just wanted to update this post with some good news. I have improved dramatically over the past 2 months. To those struggling with this disease and in a dark spot, there is hope.
My decline halted when I stopped
all anti-microbals. I stopped treating with my original LLMD who had a throw stuff against the wall approach. I began treating with Dr. M in Bethesda at the end of January. He helped immensely, with a low and slow approach. Confirmed Bartonella with positive Lyme and Babesia antibodies.
The simple approach has yielded great results and am about 80% recovered right now. I don’t how long it’ll take to get that extra 20% but consideringI was bed ridden 3 months ago and required constant monitoring, this is a staggering improvement.
In other words, there is hope and keep fighting.
Thanks again to all those who helped me keep in touch with reality through my very very dark days. This forum is a huge blessing.
Posted 3/31/2020 3:39 PM (GMT 0)
I'm so glad to hear this! Could you please say more about the new approach? Is it all supportive treatment so far, with no antimicrobials? What are you doing, taking, eating, etc?

Again, very happy for you.
Posted 5/19/2020 3:17 PM (GMT 0)
I think Dr. M in MD uses Biaxin and Rifampin or Rifabutin for Bartonella treatment but may tweak protocols for each individual. I would also be interested in hearing about HumanConclusion's protocol. Based on my own experience, it seems that Bartonella is a big deal.
Posted 5/19/2020 4:31 PM (GMT 0)
I was emailing with someone who was seeing Dr M
His focus is definitely Bartonella - and he combines Biaxin with Rifabutin - I think he starts with Rifampin first - and follows up with Rifabutin.
I believe that is because Rifabutin is stronger and it’s less grievous if you kill off some of the bart with Rifampin first.
Posted 5/19/2020 4:34 PM (GMT 0)
HumanInclusion - We’d love an update
Posted 5/29/2021 9:03 PM (GMT 0)

Pirouette said...
HumanConclusion -
Long-time member here who has been MIA for a long time.
Just wanted to encourage you to keep posting concerns and questions, especially when things are really bad.
Feels like yesterday that I felt similar pains and symptoms and hopeless and "lost and scared". When my brain remembered, I would post and it was invaluable and this forum played a huge role in my recovery.

FYI, I had a lot of success reducing neuropathy with Low Dose Naltrexone - there is a lot of good info on LDN on this site. It hasn't worked for everyone but might be worth looking into.

-p

I know this post is really old bt I'm in a similar situation. How did u do a 35 day water only fast and still be alive?? Pls give me some info on that,
Posted 5/29/2021 11:36 PM (GMT 0)

MedicalNerd said...
How did u do a 35 day water only fast and still be alive?? Pls give me some info on that,

If you search YouTube for "Alan Goldhamer Fasting" (link), you'll get some good information on water-only fasting.

Prolonged fasting should be medically supervised and done in an environment of complete rest.

Here's something you may find interesting:

"Scottish man Angus Barbieri fasted for 382 days, from June 1965 to July 1966. He lived on tea, coffee, soda water, and vitamins while living at home in Tayport, Scotland, and frequently visiting Maryfield Hospital for medical evaluation. He lost 276 pounds and set a record for the length of a fast."

https://en.wikipedia.org/wiki/angus_barbieri's_fast
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc2495396/pdf/postmedj00315-0056.pdf
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