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Posted 9/16/2018 6:20 PM (GMT 0)
Hello all,
I’m reaching out in a fit of anxiety. I’ve had a positive diagnosis of Lyme, RMSF, Bartonella, and Babesia. I’ve been seeing a llmd for over a year now. After 3 months oral antibiotics and 4 months of iv therapy, I’m still having symptoms, scarey ones that are starting to make me wonder, what if it’s not lyme?? Does anyone else struggle with this??

My symptoms include, muscle twitching, sometimes to point I randomly kick my leg or move my hand. Buzzing sensation on parts of body,mostly feet. Chest pain, heart palpitations, occasional air hunger.

Thanks so much I’m adv to any advice. confused
Posted 9/16/2018 6:25 PM (GMT 0)
Classic lyme symptoms, I have had the same -- that's Lyme disease. Or whatever complex of multiple co-infections with lyme.
Posted 9/16/2018 8:17 PM (GMT 0)

Vodka, Cran with Lyme said...
Hello all,
I’m reaching out in a fit of anxiety. I’ve had a positive diagnosis of Lyme, RMSF, Bartonella, and Babesia. I’ve been seeing a llmd for over a year now. After 3 months oral antibiotics and 4 months of iv therapy, I’m still having symptoms, scarey ones that are starting to make me wonder, what if it’s not lyme?? Does anyone else struggle with this??

My symptoms include, muscle twitching, sometimes to point I randomly kick my leg or move my hand. Buzzing sensation on parts of body,mostly feet. Chest pain, heart palpitations, occasional air hunger.

Thanks so much I’m adv to any advice. confused


I had both the twitches and also the Myoclonus jerks.

The twitches (fasciculations) happened 24/7 and multiple muscles - back, arms, legs, butt, neck...
But the jerks only happened at night when I was laying in bed.
My right leg which was “buzzing” would suddenly jerk/kick up.
Posted 9/16/2018 8:21 PM (GMT 0)
So you’ve treated for 7 months - but in that time it’s not likely you’d address the lyme , bart and Babs sufficiently

Babs can take 5 months or longer - and Bart can take many months too.
Posted 9/17/2018 12:13 AM (GMT 0)
Treatment suggestions? My llmd keeps just putting me back on same 3 antibiotics I’m starting to worry maybe that’s why I’m not getting anywhere??
Posted 9/17/2018 12:46 AM (GMT 0)

Vodka, Cran with Lyme said...
Treatment suggestions? My llmd keeps just putting me back on same 3 antibiotics I’m starting to worry maybe that’s why I’m not getting anywhere??

So you’ve stopped and restarted a few times?

What three?

Babesia needs anti malarials and bart often needs Rifampin or Rifabutin
Posted 9/17/2018 11:51 AM (GMT 0)
Yes, Ive had a couple month long breaks before starting again. The 3 antibiotics I've consistently been on are Ceftin, Bactrim, and Rochephin. Initially I was on Doxy for awhile as well, but made me pretty sick.
Posted 9/17/2018 2:28 PM (GMT 0)
Imo it's important to strategically rotate treatments especially when patient plateaus or isn't responding to meds anymore. These are tricky bugs, they need to be surprised with new killing agents every so often.

The muscle twitching is so unnerving, that symptom really scared me when I had it.

It's hard to give specific treatment recommendations. Each doctor has a different strategy. But maybe could look into specifically targeting babesia a bit more with antiprotozoals... there are also herbal options out there.
Posted 9/18/2018 12:37 PM (GMT 0)
Keep fighting! Don’t give up!
In 2012, I was diagnosed with Lyme/Babesia and Unknown Co-infection after bulleye in 2011 and testing negative for Lyme. Positive 23 and 41 band but not enough for CDC requirements, the big lie. My Igenex test was Positive with Lyme/Babesia Duncani.
Ive been told that Lyme is very difficult to kill, and you can only put it in remission. In 2012, had the IVPicc for 3 months and then in 2014 for 7 months while taking 2 antibiotics and 1 malaria meds everyday. Took 3 antibiotics/Malaria medications for 4 straight years. I also tried the Cowdon Protocol, which helped. The 7 month Picc line helped me almost get back to normal. Once a month, I have a small rash, fatigue, random joint pain, brain fog, right foot pain, calf pain, weird ear issues, gum tenderness, tingling hands at night, numb area on left jaw and short of breath, dry eyes (just started) — seems to start around the full moon and last about 7 to 10 days, half of the symptoms seem to go away until the next full moon.
I have a positive IGM23 still. Ive been tested for Lupus, MS etc. All neg. but I have a positive ANA.
Im trying the Infrared Sauna 3 to 4 times a week. Im finially sweating, a lot!
Just like you I am Looking for answers, Looking for ideas to try. Don’t give up, sweat and eat healthy.
Posted 9/18/2018 1:32 PM (GMT 0)

lymearita said...
Keep fighting! Don’t give up!
In 2012, I was diagnosed with Lyme/Babesia and Unknown Co-infection after bulleye in 2011 and testing negative for Lyme. Positive 23 and 41 band but not enough for CDC requirements, the big lie. My Igenex test was Positive with Lyme/Babesia Duncani.
Ive been told that Lyme is very difficult to kill, and you can only put it in remission. In 2012, had the IVPicc for 3 months and then in 2014 for 7 months while taking 2 antibiotics and 1 malaria meds everyday. Took 3 antibiotics/Malaria medications for 4 straight years. I also tried the Cowdon Protocol, which helped. The 7 month Picc line helped me almost get back to normal. Once a month, I have a small rash, fatigue, random joint pain, brain fog, right foot pain, calf pain, weird ear issues, gum tenderness, tingling hands at night, numb area on left jaw and short of breath, dry eyes (just started) — seems to start around the full moon and last about 7 to 10 days, half of the symptoms seem to go away until the next full moon.
I have a positive IGM23 still. Ive been tested for Lupus, MS etc. All neg. but I have a positive ANA.
Im trying the Infrared Sauna 3 to 4 times a week. Im finially sweating, a lot!
Just like you I am Looking for answers, Looking for ideas to try. Don’t give up, sweat and eat healthy.

lymearita: you say 'finally sweating'. Is this Lyme related? Because I was in an IR sauna with my wife for half an hour last week. I finished absolutely drenched and she was bone dry! Wondered if it was almost a symptom?
Posted 9/18/2018 1:56 PM (GMT 0)
I wonder about that too. Before all this I used to be a major sweater. I would soak shirts and have sweat dripping off me in 85 degree weather and super sweaty feet all year round. Now I only barely sweat if I am exercising in 90 degree weather and it is barely any sweat. Hard to tell if that is due to damage done by infections, age, or losing weight. I actually kind of enjoy not being a sweater anymore...
Posted 9/18/2018 2:47 PM (GMT 0)
It’s so hard to stay positive, some days I’m convinced this is killing me. Is picc line really only way to go? Anyone have success with just orals with neurological symptoms??
Posted 9/18/2018 4:35 PM (GMT 0)
When I first got lyme and didn’t know it yet - I went to town with hubby on a very hot day. I felt too sick to go into the store with him - so he left the keys in the ignition so I could turn on the AC. He was only going to be a few minutes.

He was delayed and came out about 15 or minutes later and I hadn’t turned on the AC so it was hot - but not one drop of sweat on me.

That changed tho - I started to sweat several months later.
Posted 9/18/2018 4:43 PM (GMT 0)

Vodka, Cran with Lyme said...
It’s so hard to stay positive, some days I’m convinced this is killing me. Is picc line really only way to go? Anyone have success with just orals with neurological symptoms??

No - not everyone needs to have a picc line.

I’m not in remission yet - but I have had improvements in neurological symptoms - I’m about 90% recovered with brain symptoms.

I’ve been treating for 4 years now BUT it should have taken only 2 to 2 1/2 to get where I am.
My first lyme doc didn’t start treating coinfections until a full year after treating Lyme only.
Then he treated me for bart for about 1 1/2 years but not Babesia (except for Artesunate which wasn’t enough)

Then I self treated Babesia for several months before going to a new lyme Dr. In February of this year. I’ve had a couple improvements since then.
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