What is your treatment plan?

I tested positive for Lyme via Igenex and saw a LLND (he clinically diagnosed me with Bartonella) who prescribed me a few different combinations of abx to treat lyme only for approximately 8 months. At that point I stopped treatment for 2 1/2 months due to climbing Liver enzymes.

Combos: amoxicillin/biaxin; Ceftin/biaxin; Ceftin/tinidazole (tini- pulsed)

After the break, (liver enzymes normalized) - I was prescribed minocycline...and a month later added Rifampin to treat Bartonella. After a few months, I switched the biaxin to mino for several months...and then back to mino.

I did that treatment for over a year...and also combined Buhner's herbs for several months.
I did several rounds of Artemisinin for Babesia (not sure if I had it) (on my own). My LLND doesn't think I have Babesia.

At some point in that year, I decided on my own to pulse my Bart treatment...so started doing M/W/F two weeks on and one week off.

I then saw a different LLND for a second opinion...she suggested LDI...but wanted me to test for Babesia and Candida via pcr blood and urine. After the test, she had me go on Bactrim, azithromycin and Flucanazole for 2 weeks to prior to the LDI.
I did that...but never did try the LDI.

When I tested, I also added Bartonella to the test...and it came back positive. (rest negative)

I continued to take Rifampin and minocycline for Bartonella - but my LLND switched the dosing of the Riffy from 300 twice daily to 600 once daily.

A few months ago, I started to treat Babesia with Mepron, minocycline and a third antibiotic (started with Zithro, then biaxin, and now bactrim ) along with Artemisinin - doing a pulsed approach - M/W/F week 1; M/T/W/Th/F week 2; then 1 week off.

That is where I am now. So, well over two years of treatment before a solid Babesia protocol.


What has worked? For me, there was no protocol that I felt quick resolution of symptoms. I have lost many symptoms slowly over time.
I haven't counted - but I believe I have had close to 40 symptoms.
I am down to about 10 now.

What hasn't worked? I think spending too long on lyme only treatment - I had plateaued...before starting Bartonella treatment. ...and then too long on Bart before treating Babesia.

Where I am now...I think could have been accomplished in less time (I've been treating for over 2 1/2 years now)

I tried using Mino for a year, and all I did was have a never ending herx, that left me severely compromised, so I detoxed for a very long time, then switched over to herbs - but I'm not sure you are looking for the herbal suggestions? If so, I'll continue on in another post. LOL.

BeKindPls said...
Thanks, Girlie, this is really helpful. Interesting, I never tried the LDI either and the doctor was really pushing it on me. I felt like a guinea pig and didn't feel comfortable chancing it. Thanks again

I'm not hearing as much about the LDI anymore...wondering if it hasn't been working well?

Girlie said...

Mustard Seed said...
Lyme positive and Anaplasmosis positive through Igenex.

Started with Doxy/Zithro/Plaquenil
Added Malarone a month later.
Swapped Doxy for Bactrim.

Then did Mino/Ceftin/Levaquin/Malarone

Then did Rifampin/Biaxin/Mino
Then swapped Mino for Tindamax, and started pulsing Alinia.

Then did Diflucan.

Then did Klinghardt parasite protocol (Ivermectin, Albendazole, Alinia, etc).

Now back to Babs: Mepron/Zithro + pulsing Bactrim with Flagyl.

Also done herbals, Buhners, Artemisinin, Beyond Balance, supplements, etc.

I haven't improved at all unfortunately.

MS - I didn't realize that you haven't had any improvements. Is this after a year of treatment?

It's about 1.5 years.

I have some minor symptoms come and go, but 99% of my problems are concentrated in a small handful of symptoms that haven't budged.
24/7 headache and huge leg weakness being the 2 primary things.

I had only two infections come up as fully positive by CDC: Lyme, RMSF. This was after the full year on Mino.

As I said, I did start with Mino, but then had to switch to herbs. I was lucky that I found a practitioner that was willing to REALLY listen to me and learn from me. She dug into the research and developed a plan for me after I had brought her two herbals to treat with - the Chronic Tonic and Houttuynia.

She had me make my own version of the Chronic Tonic, found here: www.healingwell.com/community/default.aspx?f=30&m=3244272

I herxed seriously on this, even though I was only starting with half strength tea and only one cup a day. I managed the herx and got past it, and by the second month, I knew it was working for me because I was having a reduction of symptom severity for the very first time ever.

I next added in Houttuynia at 3 months of being on the Chronic Tonic. (www.healingwell.com/community/default.aspx?f=30&m=2887463) Again, I started at half strength doses and only one cup a day, but that was a herx from H*LL, but I refused to give in. I lowered my doses a bit more, and really hit the binders hard, as well as increasing my detoxing so that was nearly all I was doing all day long, every day -either treating or detoxing. Within a few weeks, I was off and running and able to slowly titrate my doses of both up.

I used this combination of herbs for 12 months, and never looked back. I was making great progress. about 1 month before I was done though, my Babesia symptoms really started ramping up. Because of the herbs that we were going to use for Babesia treatments, I couldn't be treating the other infections because the herbs were not to be used together. So I stuck it out until I finished with Lyme and Bart treatments.

My Babesia treatment is kind of unknown, because my doctors handwriting was sooo bad!!! And she moved out of state to take care of her parents, so I lost the ability to ask her questions too. I really am not sure what all was used, unfortunately.

But it worked. I was healed and loving life - full of more energy and just feeling sooo good - more than I had ever experienced before - but life and family stress decended on me and my hubby and I ended up with severe adrenals issues - then had a tick attach and so I'm back in treatment.

I've chosen to try Buhner's this time, but I've been struggling with it and may choose to go back to the Chronic Tonic and Houttuynia yet again. We'll see, I do want to give Buhner's a fair try, and I do like that it's much easier to start on, but if I can't stick to it, it will only prove what we have been saying for a very long time - what works for one may not work on another person. Still - keeping my fingers crossed that I'm only just still struggling with it all and things will smooth out soon enough.

Thanks, all! This is great information for everyone. I think it's important that we learn about different options and know that we have choices. Thanks so much for sharing.

I've been on buhners. I absolutely love his books more than anything and coming from a very conventional science background based in technological therapies he really changed my mind on a lot of things. I am really sensitive to the herx though so after several failed attempts to implement the standard protocol at full doses I just had to start with knotweed only at microdoses and work up. I'm finally getting towards a normal low dose of knotweed and then I'll add cats claw again then probably sida acuta since that seems to hit my infection hard. Then we'll see. Doing great on the knotweed now that I'm going slow though. Do feel like I'm plateauing a bit but I'm not even at 1tsp powder yet and the "max" is 3tsp

In treatment for 1.7 years .started with bactim short course for ear infection , 1st day felt great ,next blood boiled ,vasculitis ,brain fog, muscle wasting etc .has symptoms for 20+ years ticks as a kid .saw 33 docs neuro said wait for als. Forget that

confirmed via microscopy then igenix then dna connexions ,had have ascaris ,giardia ,babs bart ,cpn hh2 hh6 ebv cmv and of course borrelia etc .

jumped in with bvt and iv h202, later got a port a cath, did whole herbs including african herbs ,dragons blood ,smilax ,teasel andrographis ,have done intense rife schedule with plasma machine ,pulsed a year of rocephin with iv zith ,riffy 4 months with some tini and alinia sprinkles ,currently on iv silver ,iv curcumin ,bvt ,herbs with zhang and rife ,sready improvement .

joint pain almost gone twitching gone ,hypoglycemia gone ,platelets rising ,fog down vertigo almost gone livedo better .microscope shows the spirochetes hiding inside rbc and wbc they certainly do not like the venom

Post Edited (bluelyme) : 5/24/2017 7:35:44 PM (GMT-6)