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Update with new treatment protocol

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Lyme Disease
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Posted 7/7/2015 7:30 PM (GMT 0)
Update: Since my Dr. has seen no progress in my lab results she has taken me off of antibiotics for a full week and is starting me on this:


1) Doxycycline 100mg. 1 pill twice a day
2) Metronidazole 500mg. 1 pill twice a day only 3 days a week
3) Rifampin 300mg. 1 pill twice a day for the other 4 days a week
4) Malarone 250/100 1 pill twice a day for 3 days
5) Weekly Rocephin IM injections.

Has anyone been on a protocol like this and was successful?

I am going to get a second opinion with a different LLMD July 27th to see her thoughts since she has more experience working with individuals with a genetic component like MTHFR, who have a hard time getting rid of toxins
Posted 7/7/2015 7:38 PM (GMT 0)
What is she wanting to see in your lab results? I don't know of any lab results to show you are healing.

Has there been progress symptom-wise?

So, it looks like she is treating you for bart and babesia?
Posted 7/7/2015 8:50 PM (GMT 0)
She wanted to see an increase in my CD57. I never really had symptoms which is the frustrating part. She had caught Lyme through a series of routine blood work. So it seems the antibiotics are making me feel worse than before I started treatment. I'm on a week break before I start that protocol and feel great.
Posted 7/7/2015 9:20 PM (GMT 0)
I've never heard of routine blood tests detecting Lyme. Do you know what test you had to show you're positive? You don't want to take all those heavy duty antibiotics if you're not sure you have it and have no symptoms and weren't bitten by a tick. The Doxy dose isn't even high enough to kill off Lyme. Minimum is 300mg. though most LLMD's give 400mg.
Posted 7/7/2015 9:30 PM (GMT 0)
I had routine blood done which included a C-reactive protein and mine was 32,which is really high. This led my doctor to test for various autoimmune disorders and ran a western blot and CD57. My western blot was abnormal in one category and CD57 was 21. I don't remember being bitten and had fatigue which I thought was due to EBV along with TMJ, headaches which run in my family and back pain. Are CD57 pretty accurate?
Posted 7/7/2015 10:22 PM (GMT 0)
I've never had the CD57 done but I know you can't go by that alone. If your Western Blot was positive then you do have it plus it does look like you have symptoms. I also thought my fatigue was EBV- related even though I was bit and that prevented me from being diagnosed sooner. Try and ask for a higher dose of Doxy if you can. I think 200 mg. is a real waste. I would only herx from 300mg. or higher though 400mg. was too high for me to tolerate.
Posted 7/7/2015 10:29 PM (GMT 0)
I have read that the CD57 is unreliable...and I've read of a few LLMD's who don't even bother with it to rate progress.
That protocol is hitting lyme cysts, bartonella, babs are at once. (except the doxy dose is low)

I wouldn't start it all together in one week....you need to be able to gauge what's causing a reaction/herx if you have one.
Posted 7/7/2015 10:40 PM (GMT 0)
Do yall think I should wait until the 27th with my new dr appt to start this protocol since it is from my old dr? She is wanting me to start it all at once. I gues since I am in grad school and extremely stressed, I associated my symptoms with that. It's frustrating to have all the antibiotics make me feel terrible when I feel fine without them!
Posted 7/7/2015 10:43 PM (GMT 0)
P41 was my only abnormal on the western blot. What other tests do yall recommend?
Posted 7/7/2015 10:58 PM (GMT 0)
I agree with Girlie that you shouldn't start with all those abx at once. A good LLMD usually starts with let's say Doxy and Rifampin to treat Lyme and Bart and then later on adding a cyst-buster like Flagyl or tinidazole to the mix then Babs at some point but not all at once.

Band 41 wouldn't be enough for me to treat unless I had pretty definitive symptoms. What lab did you test through? If it wasn't IGeneX then you may want to test through them as you have more bands that didn't show since other labs are not as good and throw out key bands like 31 and 34.
Posted 7/7/2015 11:07 PM (GMT 0)
Yea I agree as well and that is part of the reason why I am getting a second opinion. My doctor now is not good at communicating with me and explaining her reasoning. I haven't even been able to talk to her since she provided me with this new protocol. It has all been through email from her assistants and her next available appointment is not until middle of August. Unfortunately, I have to wait until the 27th to be seen with the new doctor and do not know what to do in the mean time. Especially since I also have MTHFR and it is very hard for me to get rid of toxins.

I had all of my testing through labcorp. Hopefully this new doctor will provide me with better treatment and feedback!
Posted 7/7/2015 11:33 PM (GMT 0)
I had definite herxes on Doxy though only at 300mg. and higher which is a good indication of Lyme. What were you recently on and what kind of symptoms were you experiencing?
Posted 7/7/2015 11:40 PM (GMT 0)
MONDAY AM: septra, flagyl, biaxin PM: Septra, biaxin, flagyl
TUESDAY AM: septra, flagyl, biaxin PM: Septra, flagyl, biaxin, diflucan
WEDNESDAY AM: Septra, flagyl, biaxin PM: Septra, flagyl, biaxin
THURSDAY AM: Septra, flagyl, biaxin PM: Septra, flagyl, biaxin
FRIDAY AM: zithromax, malarone, biaxin PM: biaxin, diflucan
SATURDAY AM: zithromax, malarone, biaxin PM: Biaxin
SUNDAY AM: Zithromax, malarone, biaxin PM: Biaxin
I then have a 4 day break free of all medicine and start back on the monday schedule after the break.

This was my previous protocol. But she had taken me off of it because I couldn't tolerate it and my labs did not change. When I was on these meds I would be nauseous every day with some days of vomiting, extreme fatigue, racing heart and getting out of breath and just feeling like crap in general. I am supposed to stop all medicine for a week and start up the new protocol in the first post. I am just hesitant to start before my appt with my new doctor.
Posted 7/8/2015 12:31 AM (GMT 0)
Some of that could definitely be herxing. I would call the new LLMD to see if he/she has the IGeneX kit. If not, you can order one from the lab and bring it with you to your appt. to get blood drawn. You're negative through Quest but that means nothing. IGeneX is so much better.
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