Malarone Compared to Mepron, Heavy Protocol

running wild said...
My LLMD strongly believes Babesia and Bartonella are pushing Sjogrens Syndrome, making it worse and worse. In conjunction, that affects dsyautonomia.

The gambit of medications and herbs he as proposed are going to be a big challenge if I start it. But seems I have read malarone can be very hard to take with herxes, and mixing it with azithromax even tougher. He wants that three days a week . At this point, I am at low point with all my symptoms - lowest in 22 years and losing hope At a point something desperate needs to be done, and that is what he was getting at.

He has nystatin every day, biocidin to clear infections, methylene blue, LDN and more.

I trust him but don't know if I can even begin to handle it.

I think it’s worthy of trying.
Three days a week gives you time to recover before taking it again.
If you feel horrible after the four days off - then you could extend the off time for a few more days.

Would it be wise to start off treating only Babesia to see reaction first? Girlie - If I remember correctly, didn't your liver and kidney numbers get worse when you started treating?

Thanks, Girlie. I had remembered your liver enzymes were high, but couldn't think of exact reason.
He also wants me taking Cryptoplus one week and Artemix the next. Also with the zithromax and Maralone, he wants me on Bartcore for Bart and methylene blue, LDN and a few more.

I have to go very slow. That's why I'm wondering if you and others think starting with Babesia and then adding is best. I'm nervous about trying any of it as Sjogrens needs immune system tamped down (which LDN could do if I tolerate it) but others won't. I just keep going back to how infections can make autoimmune conditions worse but so can building immune system.

Weak feeling legs and progressively out of breath and weak going up multiple stairs. I gotta try something.

SlowButSteady said...
I was on Malarone, Azithromycin, crypto plus and Artemisinin for quite a long period early in my illness. I actually found the malarone and azithromycin tolerable. It was the crypto plus and artemisinin that hit really hard. I had to dial those up very slowly. In any case may want to add each individually and titrate up slowly. Nothing wrong with that!

My most recent Igenex is neg on all accounts for Babesia. That only leaves Lymes, Bartonella and Anaplasmosis lol.

Negative tests can be false when testing for Lyme and coinfections.

What I was told (by 3 - maybe 4 lyme docs) positive results means you have it… but negative results aren’t reliable - it could be a false negative.

That is why my Lyme docs treats Babesia and Bartonella.

Happy to see that, SlowButSteady. All the testing can get confusing, then mix in an autoimmune disease, and really opens the door to just about anything. LLMD thinks treating the infections is worth a shot, and at this point, I can't get much lower.

One of the things that throws me is I have never had night sweats in all the years I've dealt with this. But right now, very weak feeling legs, neuropathy, fatigue, dazed, dizziness and sometimes an afternoon very low fever.

SBS - Did you start out treatment at very low doses?

Hope you adapt to the IV meds. Many years ago I tried it with Clarithromycin (spelling?) and started shaking and fever went to 106. That's when he changed me to Bicillin injections.

Good luck with that. Do you still have the other symptoms I mentioned above? Hope not.

Running Wild,
Is this LLMD in GA, or are you traveling out of state? Is this a completely new doc or one you’ve treated with in the past?

SBS - So glad to see you have adapted well. It's always a big question when new things are started. And good to know your symptoms of Babesia are better. Did you have a lot of the symptoms you mentioned even before treatment?

WBF - The LLMD is in Nashville. Have used him since late 2013, off and on. He is he one who originally helped me get to 85% and he also knows autoimmune. Very good, caring person.

garzie - I didn't know that about Bartonella soptting or suppressing babesia fevers. It's strange, but the afternoon, mild fevers I have experienced for years have started back again at about 5:00 pm then fade in a hour or two. I can feel them coming even before they get higher (only like 99.2) with dizziness, fatigue and more trouble breathing.

Treating infections again is not a simple decision as it always runs the risk of causing a ramp up in autoimmune. But at this point, in my mind, something has to be tried as tings have gotten so much worse. Not much of a risk, and that is what led to my decision. But I will not start the treatment plan as my LLMD has planned. He agrees to start in stages and very, very low.

running wild, I had a ton of symptoms when this hit me like a bus.

Started with minor migrations with visual symptoms right before it hit. Just figured I had low blood sugar and ate something.

Then it got progressively worse in two weeks and my right leg was going numb. Terrible head pressure and headaches. I thought I had brain cancer. But CT was neg and fortunately the ER doc tested for lymes on a hunch.

That came back positive and things still progressively got worse on the doxy prescribed. They did a lumbar puncture, which didn't heal for 10 days (flat on back). UH>

Mayo did give me 28 days of Rocephin then said "See yah!".

Then began my LLMD search. I am currently on my second doc, and am very impressed. Many of my symptoms are now gone, but others have popped up as I progress. Similar to the weather in Wisconsin, don't like it - wait a day!

Very hard when you are reacting to everything you are trying to treat with. I see you did recover to 85-90% for awhile, that is certainly good news and shows opportunity!

I strongly believe in treating babs first, then hitting any other coinfections. Leaving lymes more vulnerable to immune system and ABX. One thing I am on is plaquenil, that has reduced inflammation, but does tamper the immune system. A bit of a paradox as you eventually want your immune system to take over the fight. Will cross that bridge when I get to it. The bladder stuff keeps my quality of life limited right now, but no more neuropathy! I believe the inflammation was causing the neuropathy, as it still can show up for a day or two when herxing.

Keep battling running wild, I will be praying for you this evening.