Newly-diagnosed. Any suggestions?

I've taken all of those. For me the toughest to handle were Omnicef, and Flagyl. I take Bactrim DS which has Septra in it. That was pretty tough to start also.

My advice is to start one at a time and add the others in. That way you know which ones (if any) are creating problems for you.

None of those are considered hard-hitters for Babesia. Minocin and Septra have mild anti-malarial properties but most people use Mepron, Malarone, Artemisinin, Cryptolepis, Zith, or clindamycin for Babesia.

patience! #1
nothing with lyme fits in a box. or a time table.
everything Ive been told or have read has been a genral guide line.
you will have to find how it all applies to you.
no silver bullet.
Ive been treating for a couple of years, I do feel better, but I'm still learning alot.
diet is my weakest link, I realy struggle with meal prep.

TOM

Hi Yellow

As I sit here and think about you beginning this journey the first bit of advice I can give is to try and accept your illness. There will be many challenges you will face. Personally acceptance was very hard. I wanted to continue being a healthy wife, mom, grandmother, friend, and employee. I had never been sick in my life and Lyme was a quick slap in the face as to what chronic illness does to a person. I wish you well and hope your family and friends support all you do. Keep reading all the great advice from your Lyme friends here on Healing Well. My best to you!

Hi YellowOrange. Im glad you were so quick to find a LLMD. For me it took months of working with bad infectious disease doctors to find the right doc.

My own symptoms dramatically improved within 3 to 8 weeks of antibiotics. Symptoms like swelling, fevers, night sweats, headaches, insomnia, dizziness, chills, heart palpitations, swollen lymph nodes all eventually went away. I've had 2 relapses in addition and all three took the same amount of time to recover.

However, my brain fog and memory took months to improve (and if you ask me Im still only 90% as sharp as I use to be).

Im also on generic Omnicef which worked great at first, but I feel lately as though I have plateau.

Please do phase in the abx - and any other supplement/drug/herbs - slowly!! First of all, that way if you have some kind of a reaction (since we require such high doses of these things), you will know immediately what caused what and can take appropriate steps to stop it.

The other reason for phasing each addition to your treatment one at a time over a reasonable time is because the combination of all of them at once would likely throw you into a horrible herx! Believe me, no one wants that, or wants that for you!!!

Be sure that you are actively helping your body to detox, because the toxins will quickly overload your body if it's not able to stay on top of it all. And that brings on a horrible herx as well. Always remember, the stronger the herx, the less healing that can occur, as your body is busy dealing with the toxins and not concentrating on healing.

You should also be taking some heavy duty probiotics. There are many brands and strains of probiotics out there. The best ones require refrigeration and you should be taking a minimum of 30,000 - 50,000 each day - at least once a day. I personally like using kefir, as it's got a whole fistful of different strains of the healthy bacteria, plus more to help rebuild or keep your intestinal flora good.

Yellow,
I did take them all at nice. I as good until week 2 when I took the Flagyl- it absolutely kicked my butt and put me in bed for 3-4 days.
Are you seeing Dr J in DC?

bdoc and Sapphire4, thank you for your follow-up messages. Sorry for the delay in replying on my end; I didn't realize you had replied.

bdoc, yes, I'm seeing Dr. J in DC. Thanks for very much sharing more about your experience with treatment. I'd definitely like to continue to compare notes as I really embark on treatment. I start on my antibiotics this Monday (deep breath). Dr. J put me on very low dose Lyrica (25mg 2x/day), so I've ramped up on that over the last two weeks (and have adjusted pretty well so far).

Sapphire4, I really appreciate your thinking about me and checking in. I definitely need the support. As I mentioned above, I just started very low dose of Lyrica, which the doctor said should help support me through some of the more painful times during treatment. (I've already been diagnosed with fibromyalgia; no surprise that this all fits together.) I'm also on midodrine for low blood pressure (specifically neurially-mediated hypotension, another piece of the puzzle, though it also runs in my family).

I've also begun taking a slew of supplements (including probiotics) that the doctor recommended to help support my immune system. I'll post them soon so that others can benefit from this information. The doctor recommended those as well as a bunch of natural detox materials/methods (epsom, skin brushing, decaf green tea, gluten free diet - which I have already been on for over a year, and hydrogen peroxide, etc)...it's reassuring that the doctor takes such a holistic approach to try to support immune system recovery.

As for treatment, I've decided to start the three antibiotics on Monday as directed, and it's intimidating; it goes against my usual approach, but I'm pretty pissed off at this bacteria and am ready to wage war on it while trying my best to support the rest of my health. Just getting stocked up on supplements and detox supplies helps me feel better prepared, physically and mentally. I bought the generics of all three drugs - minocin (monocycline by Watson Labs), generic Bactrim DS/Septra DS (SMZ-TMP 800/160 by Amneal), and omnicef (cefdinir by Lupin), so hopefully they will be good quality. (I confirmed that they're all gluten-free, but let me know if you've heard differently!)

My specific treatment plan is MWF:
Omnicef/cefdinir - 600 mg 2xday (1200 mg/day)
Mino - 100 mg 2xday (200 mg/day)
Bactrim/SMZ-TMP - 1.5 tablets 2xday (2400 mg/day? wow that seems like a lot.)
I'll do that for two weeks and add Flagyl on Th and Fri of the second week (1 2xday), then take off the third week. (Moderators: not sure if it's okay to post my regimen here, so I understand if you need to edit this post. I understand that this is a treatment plan designed just for me by my doctor based on his assessment of my situation.)

I'll write and let you know how next week goes, and I'd love to hear any more guidance you have. You can probably tell from this post that I'm getting organized to try to compensate for the unpredictability of treatment...emotionally I've been making progress with cultivating patience in advance of the challenges ahead.

These are pretty short courses of antibiotics, but the doctor said that it should take 12-15 months, so we'll see what's next. Any thoughts? I'm expecting the Flagyl to be bad, but the others are unknowns. I'm also hoping that the two recent rounds of amoxicillin helped stabilize things a bit, as I did experience detox and then a more refreshed feeling (though you'll probably point out that this signals that the bacteria have moved to cyst form...)

Post Edited (yelloworange) : 6/16/2013 6:13:45 PM (GMT-6)

Hi yellow,

In reference to your question about herxing. I do find it strange that typically my herxes don't start until about 5 days in. I started pulsing flagyl on the weekends. I'm on my third week and I feel worse then the first week- but not bad. Sometimes my herxes start happening the same day I take a medication also.

Yes, protect your bank account.

Just keep your head up and maybe you will feel better sooner than you think. I started treatment in March and I feel about ~80% most days. And oh - what a wonderful ~80% it is that I am so grateful for.