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Posted 7/6/2017 5:58 PM (GMT 0)
So I thought was headed in the right direction. I was having a lot more good days than bad. Thought I had turned the corner. Still had a little Herxing when I added something new or increased a dose, but that was to be expected.

Well, I've been really sick for the last 3 weeks. I've had a few good days, but mostly bad ones, and some REALLY bad ones. For the past three weeks, I basically feel like a did before I started treatment in February. I'm doing abx (and a ton of supplements). I still haven't even gotten to the full dose of the last abx (he has me on 3).

I'm really thinking that I may have Babs, but the DNA Connexions test was negative when I took it. I called my LLMD and he had a cancellation and is able to get me in today.

I'm just scared. I'm scared that he will change up the treatment, which may very well make me even sicker. Or he's going to want to test for a bunch of other things, which is going to cost a fortune. Or he's going to suggest of IV treatments, ULV, etc., which also will cost a fortune.

I'm so tired of this. My husband is tired of this. He has been wonderful, but in the past month or so it's been obvious that his frustration and stress is growing. And I don't blame him. I can't work, so all the money we are spending is what he's working so hard for. It's absolutely not fair to him.

Sorry this ended up being more of a vent.
Posted 7/6/2017 7:56 PM (GMT 0)
mm-I had the same thing happen at about 6 months and it was really depressing. I've seen the same pattern happen to loads of people in the past 3 years so as hard as it is please try hard not to get discouraged. Treating these infections is very much like being on an extreme roller coaster ride. You get a tease that your better and WHAM!

I've read in numerous places that it can be really difficult to get a positive Bab's test if you haven't treated for Bart. That may be the issue with you? Just throwing that out there as a possibility.

I'm glad you were able to get into your LLMD-remember you can opt out of expensive testing. Don't be embarresed to say the tests are cost prohibitive and you'd reather spend the dollars you have on treating.

You can rant anytime you feel the need. We've all been there at one time or another.
Posted 7/6/2017 8:23 PM (GMT 0)
Hang on there dear. Our stories although different, are so so similar. Just follow your gut feeling, you'll find your way. Our marriage how vows are tested here for sure. For better or worse. I know you tell hubby how much he is appreciated, just keep doing it😊
Posted 7/6/2017 9:00 PM (GMT 0)
So sorry to hear how hard things are right now. I'm in a similar situation with my hubs being the only one working, and it's really frustrating for both of us.

Do you think your meds are making you feel sicker and maybe need a break? Have you pulsed at all?

The reason I ask is I've been on abx for six weeks, and I can tell where my body is starting to rebel.

Hope you can figure out a plan with your LLMD that doesn't break the bank. Hugs, Denver1
Posted 7/6/2017 9:10 PM (GMT 0)
Best of luck!! Please do let us know what the LLMD has to say too, please!

And I agree - many of us have been there, wondering what may be next.

Is it possible that you ramped up too fast on the last abx? Or that you are herxing from it even if you took it slow? I would encourage you to increase your detoxing if you can.

And, vent away!! We most certainly understand the very real struggles that these infections can bring into any relationship!
Posted 7/6/2017 9:33 PM (GMT 0)
So, the last abx I added in was Tinidazole. Even though I pulse it MTW, and still have been feeling bad every other day too, he thinks that may be it. So he's taking me off of that and replacing it with malarone to address possible Babs. Anyone with any information on the malarone, please let me know. He's starting me off on the lowest dose. I see him again next month.

He is leaving me on the Ceftin and Doxy.

I have to say I was kind of a mess when I saw him. He could tell I was obviously frustrated and stressed. He suggested that I check into Annie Hopper's Retraining the Brain program. Never heard of it. It's about retraining your limbic system. Has anyone done anything like that?
Posted 7/6/2017 10:59 PM (GMT 0)
Malarone is an anti-malarial medication - used to treat Babesia.

I haven't done the Annie Hopper's Retraining the Brain program.
Posted 7/7/2017 5:54 AM (GMT 0)
Malerone has trashed my step dad and his mitochondria. ..there is more than one way to skin this cat scratch fever ...bvt ,rife ,herbs,hbot all or none .the first 2 are usually low cost and or one time investments ...remember there is no wrong path just short n long ...luck isnt involved when you take a active participation in how best to get back to health ...sometime is hard to feel and trust but remember a surgeon will cut ,homeopaths use water and llmds only have pens to write scripts. It usually the only tool in the tool box and when youre a hammer everthing looks like a nail....
Posted 7/7/2017 9:58 AM (GMT 0)

bluelyme said...
Malerone has trashed my step dad and his mitochondria. ..there is more than one way to skin this cat scratch fever ...bvt ,rife ,herbs,hbot all or none .the first 2 are usually low cost and or one time investments ...remember there is no wrong path just short n long ...luck isnt involved when you take a active participation in how best to get back to health ...sometime is hard to feel and trust but remember a surgeon will cut ,homeopaths use water and llmds only have pens to write scripts. It usually the only tool in the tool box and when youre a hammer everthing looks like a nail....

He suggested an herbal treatment (didn't say which one, but mentioned Buhner). Thing is that herbs kind of scare me since having a horrible reaction to one drop of Oil of Oregano. The other thing is that my insurane is still covering my prescriptions 100%. So cost is a factor. It shouldn't be, but it is. I'm really at my wit's end and don't know what to do. It's 5:00 in the morning and I've been awake since 1:00. I feel horrible, I can't sleep, and I feel like I'm running out of options.
Posted 7/7/2017 10:24 AM (GMT 0)
Morning mm57553,

I know it is difficult, scary and frustrating going through all of this. I struggled with decisions about staying with llmd, taking this or that etc.

It takes time and trial and error treating Lyme and co for many of us.

There is hope and a chance for better days. When I started treatment in Sept 2016 , I felt almost normal after a few months, but then the other co infections reared their ugly head.

What I'm getting at, is that in time your treatment along with dedication to doing detox, supportive supplements, probiotics,exercise, and healthier eating that promotes gut health will help you tremendously on the path to get well.

I have been taking malorone for many months now with no negative side effects or issues. Its important to make sure Babesia is gone. It takes at least 5 months or more for that. My llmd says many doctors miss ther babesia and people stay sick.

I'm treating for Bartonella with Azith, BActrim and the full Buhner Bart protocol also with improvements.

Its normal to be overwhelmed with all of this, but don't let it take over and win.

You have the knowledge and the support here to help you make it through all of this.

Hang in there, keep moving forward. Wishing you the best of healing.

Take care, Jo
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