I am at a crossroads in my illness and treatment, and really need some advice from people who have been ill for a long time (and especially from those who have gotten better!).
In brief: I got very sick in mid-2006, treated 4 months orals and 10 weeks Rocephin plus some Flagyl pulses. Stabilized and felt about 75%. My sort-of LLMD didn't treat coinfections. I was relatively fine off antibiotics for about 1 1/2 years. During this time I did some alternative stuff but nothing really intense.
Read about coinfections and realized I needed to go back to treatment with an LLMD. Started seeing Dr. S in CA in early 2009 and have been on various oral antibiotics (for Lyme and Bartonella) and anti-Babesia (Mepron and Zithro) meds since then. I switched to seeing Dr. H in CA this past fall (2010).
I was off tx for Babesia for most of 2010, and definitely felt it creeping back, and have been feeling pretty ill for the last couple months, even though I continued tx. I started back on Malarone at 6 tablets a day a couple weeks ago and completely crashed: insane anxiety, malaise, weakness, disorientation, extreme fatigue, etc. These were things that I associate with both Lyme and Babesia, and it feels more like a relapse than a herx. I backed off to 1 Malarone/day and am trying to ramp back up. I was shocked by how sick I got again so quickly.
At this point I am facing having to build myself up from what seems like scratch again. After nearly five years, it's very disheartening, and it feels like I will be on antibiotics for ever.
I want to start 2011 with a fresh perspective and a more comprehensive approach to this illness. I have a rife machine, and Dr. H has rx'ed some herbs to complement the antibiotics. I am just hoping for some advice and input on what might be the missing piece in my treatment and approach.
Thanks for listening!
-Emily
Posts: 33 | From CA | Registered: Apr 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Up.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Did you ever add artemesinin to your anti-babs protocol? Some people, including me, think that was the missing piece. But you don't take it forever, and it is an addition, not monotherapy. But then even with this, babs still persists in some, and they go on to try lariam, or one of the other anti-malarials. Coartem, chloroquine+.
What is your bartonella status?
Posts: 8430 | From Not available | Registered: Oct 2000
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My babs finally went away with zithromax and artemisinin. Finished it off in 2 months.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
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You can beat this. It's your first crummy Lyme doc who set you up to require even more intensive treatment. Sorry about that.
You are with good doctors who treat thoroughly. Like you, I treated my Babs for an entire year, then was fine for 18 months, then had a relapse. I also had extreme herxing when I started Mepron again.
But it didn't last. In fact, I only herxed for the first few days, but I stayed on Babs meds for 2 months. I think you will find you can increase your Malarone dose pretty quickly once the early herxing subsides.
I don't believe you are starting from scratch. Your pathogen loads are down, but you still have symptoms. Babesia is tricky, and most docs agree that even a low pathogen load can cause symptoms.
You are smart to prioritize your healing for 2011! Put that rife to use! I know many patients who have recovered on the combo of abx and rife.
Plan to treat with abx until you are symptom-free, and then the ILADS recommended 3 more months. Then plan to maintain with rife and/or herbs for at least one year.
And don't get too stressed about relapse. It is part of our illness. You just get back on the horse and keep riding.
I would like to add that I am now treating for parasites, and moving forward in my Lyme treatment at a much faster pace. And many of the anti-parasitic herbs treat Babs, so I feel I'm keeping my population from growing again.
I did Humaworm for 1 month, and now I am on Hulda Clark's protocol. I find the cloves, which are known to be anti-malarial, to be really stong against the Babesia.
You could do a parasite challenge by running parasite frequencies on your rife, and seeing how you respond.
posted
Thanks so much for the input, everyone, it's very helpful!
BoxerMom, did you do the parasite treatment while on antibiotics? I have done a lot of travel in developing countries and I am sure parasites are in the mix...
Posts: 33 | From CA | Registered: Apr 2007
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