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Posted 3/20/2019 1:14 AM (GMT 0)
Long time lurker; finally decided to register and start posting. I'll try to be brief with my story:

In the summer of 2016 I came down with what my family doc called a “viral syndrome”. I had extreme fatigue for about a week. Blood tests showed that I had a low white blood cell count. No other unusual findings. Health seemed to return to normal without treatment.

In the summer of 2017 I again came down with extreme fatigue and additional symptoms- heart palps. Light headedness, shortness of breath, night sweats. Family doc ordered ECG and more blood work. ECG showed 1st degree AV block. Blood tested positive for Lyme and Babesia (no other co-infections were tested for).

Started antibiotics immediately. 30 days of Doxy, then a 2 week break, then 2 weeks of Atovaquone(Mepron) + Azithromycin. I felt better during treatment, however, a few weeks after treatment the heart symptoms returned. Rather than "another round of Doxy", I began treating with Buhner Protocol.

I have been on the core Lyme herbs for 15 months or so plus some of the heart specific and neuro specific herbs. Also went through 6 weeks of Cryptolepis and Sida Acuta a while back when the night sweats returned. With some ups and downs the herbs got me feeling better.

I had been on the herbs for more than a year, so I decided to try weaning myself off of them. I first ran out of Chinese Skullcap so I stopped taking that one. A week later I had trouble sleeping for 3 nights in a row- not sure if it was related to stopping the Skullcap or what, but after that I just started feeling awful again. Heart issues are back, fatigue, brain fog, anxiety, night sweats… also started taking my morning body temp and it’s been averaging 96.8.

Had another ECG at the family doc and it again showed 1st degree AV block. IV Rocephin is usually prescribed for Lyme when heart is affected. Doc suggested I see a Lyme specialist and inquire about it.

I made an appointment with Dr. S. at the Tick Borne Disease Center of Southeastern PA. He is not an LLMD but he will take my insurance. Unfortunately he’s pretty backed up so I won’t be able to see him for another month.

I have heard that most LLMD’s prefer to treat co-infections before using IV Rocephin. Because the night sweats have returned, I am still concerned about babesia and maybe bartonella. I don’t know how thorough Dr. S. will be with all of the possible co-infections, so I am considering treating with Buhner’s complete babesia protocol while I’m waiting to see him (last time I only used Crypto and Sida). I haven't stopped the Lyme herbs and I plan to continue them indefinitely.

So that is where I’m at right now. Couple things I’m wondering specifically:

Anyone here have experience with IV Rocephin for heart involvement?

Any experience with Dr. S. and the Tick Borne Disease Center of Southeastern PA?

All other thoughts or suggestions about my situation will be greatly appreciated!! Glad to have this place for sharing stories and information. Thanks for reading
Posted 3/20/2019 3:03 AM (GMT 0)
I recommend allimax.com allicin you have to that 3 per day, garlic is and has been used for years to cleanse the blood. This does kill babesia better than anything else. Lauricidin can kill babs also do not rule out these natural products. I almost died from hypocoagulation last spring I fought hard to get feeling better and sometimes you have to use pharma to get ahead of the illness then use the herbs, heart block is very serious and you can beat it it is usually by iv treatments not just roceph, ceftin can be used too and intercellar shots can work almost as good as iv. Goodluck and I will pray for you and all of us like I do daily. My llmd, allicin,lauricidin,lumbrokinase,ginger tea, and antibiotics saved my life three docs told me I was within 30 days or so of dying. You can heal but sometimes you have to get aggressive, and you need a great llmd to get you there.
Don
Posted 3/20/2019 12:05 PM (GMT 0)
I live in Eastern PA, i haven't really been happy with the LLMDs here. so, i travel out of state.

"Tick Borne Disease Center of Southeastern PA" seems suspect, as a lot of the reviews say the doc there doesnt believe in biofilms and co-infections, two of the main themes of treating these diseases.

if you cannot travel out state, i would recommend seeing Dr M in Exton, PA. IMO, she is good with diagnosing and treatment, but falls short in treatment length/duration. but i believe she would accurately get you diagnosed and started with the correct treatment, and get you aligned with the right testing for your heart.
Posted 3/20/2019 3:58 PM (GMT 0)

potsnpans said...

In the summer of 2016 I came down with what my family doc called a “viral syndrome”. . . . Health seemed to return to normal without treatment.

In the summer of 2017 I again came down with extreme fatigue and additional symptoms

potsnpans,

Sorry for your troubles and welcome to the forum. Glad you finally joined. The first part of your story caught my attention: 2 summers in a row, health returned in between. So, I must ask - did you live in or spend time in another place each summer?
Posted 3/20/2019 7:15 PM (GMT 0)
Welcome to the forum, potsnpans!
I’m glad you’re looking for a LLMD to treat you.
Your antibiotic/Mepron treatment was too short in duration.
These chronic infections can take many months to years of treatment.

I know it’s more convenient to stay in PA to treat but if you don’t find a good LLMD there - then it’s best to travel to a good one.

I have talked to a few people from PA who weren’t happy with their lyme docs.
These Drs were in/close to Erie.
Posted 3/21/2019 12:52 AM (GMT 0)

sierraDon said...
if you cannot travel out state, i would recommend seeing Dr M in Exton, PA. IMO, she is good with diagnosing and treatment, but falls short in treatment length/duration. but i believe she would accurately get you diagnosed and started with the correct treatment, and get you aligned with the right testing for your heart.

Thanks! I'd really like to see her but I don't think I can afford it. My hope is that I can treat co-infections with herbs and get IV Rocephin (covered by insurance) from the other doc for heart issues.

WalkingbyFaith said...
The first part of your story caught my attention: 2 summers in a row, health returned in between. So, I must ask - did you live in or spend time in another place each summer?


Well maybe I should have left that first summer's illness out of the story. I've been in PA year round. I've just pulled plenty of ticks off of myself over the years- my yard/garden is full of them. I suspect it was Lyme and my immune system was able to handle it before it really set in. In any case, it's not particularly relevant.
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