Update for all of you wonderful people here

Hello everybody!

Checking in because things have changed for me and I wanted to report. I learned so much here and want to give back a bit...although I'm not sure any of this will be news to anybody. You guys know SO MUCH!

I was diagnosed with Lyme in January 2016 (although I knew I had it before then). I started on Buhner's Protocol and got up to full speed in May 2016. I saw a TV interview with an LLMD in June-ish 2016. I liked his vibe, so made an appointment to see him. (Waiting list was 9 months) I decided that if I wasn't much better by then I'd keep the appointment.
I WAS much better after Buhner's Protocol, but definitely not 100%, so I kept the appointment with Dr. P in CT.

First visit in March wasn't quite what I expected, because I didn't get a chance to ask questions...so much time was spent obtaining my medical history. This second visit was much more satisfying. I got a chance to ask! He's incredibly intelligent and has been treating Lyme for 20+ years. He quotes studies and stats from all over the world, and uses both conventional and alternative treatment methods. I really like him. He confirmed what I have come to believe, after doing Igenex tests for the past year: most people who live in the northeast have been exposed to Lyme, whether they know it or not. He said, "Most don't result in clinical illness." Many do and are not properly diagnosed, as we already know. Mind-blowing visit.

He pulses abx. First, doxy for 4 weeks, then 2 weeks off. Then Tetracycline (he says backbone of treatment) x 2 weeks. I herxed on the tetra...was exhausted and had to nap a lot.
Then 2 weeks off. Next the plan is double the dose of the tetracycline and liposomal oil of oregano (compound pharmacy)
He would have liked to have started Fluconazole but there are issues with my EKG so I have to check with cardiologist before I can take Biaxin, Zithromax or Fluconazole. (I said no to Cipro.)

My case is straightforward, because I haven't been treated with abx for Lyme until now. Most of the patients he gets have failed many courses of antibiotics elsewhere and are much more difficult to treat.

I feel very hopeful.

Love to all of you who gave me so much love and support when I was first diagnosed!

Hi Kathie!-

Thank You so much for keeping us updated on your journey to healing!

I am so happy to hear about the progress that you made with Buhner's protocol. That is great news!

I am sorry that you still aren't 100% yet, but it sounds like you will get there.

I am also sorry to hear about issues with your EKG. I do hope that the cardiologist and LLMD are able to help you with this.

Thanks again for keeping us updated on your new protocol. I hope that you continue to heal!

Best Wishes!

That is wonderful news! I'm so happy you have found a good doctor (and if it is the doctor I'm thinking of he is great, have had the privilege of meeting him in person and he KNOWS his stuff).

Please keep us updated. Fingers crossed for lots of continued progress!!!

Great news, Kathie!!! And thank you so much for letting us know!

Confidence in your doctor goes a long way!! I hope that you do well and this doctor is of great help to you!! Do be sure to keep up the detoxing though.


And let us know how you are doing as you go through this treatment!

Thanks, everybody!

Little Bear, palpitations/EKG changes were one of the many symptoms that convinced me that I did have Lyme. I have a bundle branch block with prolonged QT (could be normal?). Have to get OK from cardiologist to take either fluconazole, biaxin, zithromax or cipro. I said no to any fluoroquinolones. I did a little research and found this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4404501/

He uses fluconazole for borrelia. I've tested negative for confections but we know how reliable tests are. https://www.ncbi.nlm.nih.gov/pubmed/15337633. and this:
http://buhnerhealinglyme.com/lyme/diflucan-for-lyme/

Kat1000, I took doxy 150mg twice a day...enteric coated, couldn't stomach the regular doxy...had bad abdominal pain. Tetracycline was two capsules twice a day, not sure what the dose was.
I'll be taking double that when I start the next round (haven't picked up the rx yet.) I have to be in court for the next couple of weeks, so I probably won't start the next round until that's over.

Octobrsky13, Right? He's a sweetheart. I stopped the herbals when I started the antibiotics. Honestly, taking all of the herbs was incredibly difficult with my lifestyle. I'm a home birth midwife. I can be called out at any time day or night and can be away for as much as 3 days at a time...it was so stressful trying to plan around that. That said, I will probably take his basic LB core protocol from Green Dragon Botanicals as a maintenance dose when I'm finished with the abx. I am a major Buhner fan. I never wanted to take antibiotics at all, but the herbal regimen was costly, I have insurance which covers the abx, and it felt right to begin work with an LLMD. Buhner got me much, much better! How long have you been taking antibiotics? Is this your first round?

Traveler, I am detoxing! Epsom salt baths every night, green juice, skin brushing, castor oil packs...
So glad to see you still here!!

I have ordered around ten or so Igenex tests for folks over the past year. Every single one was either CDC or Igenex positive, or at least had some IND or positive BB specific bands. This was startling. I realized that probably everyone in this neck of the woods has been exposed. When I asked Dr. P about it, he said this: He knows of a study, Western Blots were done on a group of healthy people...no Lyme symptoms.
ELEVEN PERCENT of them had Western Blots that were CDC positive! If you extrapolate that and consider that the CDC says Lyme is vastly underreported (30,000----when actually it's 300,000) that would mean multiply that 11% by 10 and you have 100%!!!!!

We are in big trouble.

And the scary thing is that 11% positive was with labcorp or quest I'm sure. Just think how many more would be positive if bands 31 & 34 were listed.

So great to hear that you are doing good!

Octobrsky13, Right? He's a sweetheart. I stopped the herbals when I started the antibiotics. Honestly, taking all of the herbs was incredibly difficult with my lifestyle. I'm a home birth midwife. I can be called out at any time day or night and can be away for as much as 3 days at a time...it was so stressful trying to plan around that. That said, I will probably take his basic LB core protocol from Green Dragon Botanicals as a maintenance dose when I'm finished with the abx. I am a major Buhner fan. I never wanted to take antibiotics at all, but the herbal regimen was costly, I have insurance which covers the abx, and it felt right to begin work with an LLMD. Buhner got me much, much better! How long have you been taking antibiotics? Is this your first round?


I've been treating for a year - pulsing (as you know) two weeks on/two off which is technically 6 months of actual abx. But I'm treating for a relapse after long (12 yr) remission so it may take a while. I treated for 6 yrs off & on after a tick bite 25 yrs ago. I'm treating conservatively - just not comfortable with aggressive meds so want to go herbal. I also never wanted to go back on abx but I was so debilitated a year ago couldn't read enough to even work out a herbal regimen. I was fortunate to only have to wait 3 months to see Dr. P. Also seeing a LLND to help with the herbal transition but it's going really slowly;)

Hope you do well with your continued treatment and reach full remission soon;)

Kathie said...
Octobrsky13, what precipitated your relapse? Do you think you got another bite? Was it stress?
Abx worked the first time, right? Did you see Dr. P 1st time?

Not really sure. I went back to work & was exposed to mold. My life wasn't exactly stress free while I was in remission so I don't really think that was it. I am naturally pretty calm. Being ill is the type of stress I don't handle well.

I can't be absolutely certain about another bite. I didn't see a tick & I'm pretty diligent about checking but those nymphs are impossible to see & we did have a dog up until 2 years ago. I think it's a relapse b/c I relapsed twice after initial 2 year treatment & this one felt exactly the same symptom-wise.

Abx did work the first time. There were no herbal protocols back then. I didn't know about Dr. P so I saw a dr. that just treated a lot of Lyme but not a LLMD per se. I relapsed twice & retreated for 6 months each time but I was initially only treated with Zithromax. It did work but obviously not well enough. I was caught early - just 6 weeks after the bite but I got really sick, really quickly. All neuro with a touch of cardio. The 3rd. time was Zithromax with Doxy and that put me in remission for 12 yrs. I've always lived a healthy life style & I think that helped to keep me in remission and may be why I responded so well to conservative treatment. Before the tick bite I was only ever on an abx twice in my life. I never take meds or even supplements.