Feel like I'm getting worse...long post

[Elleon_arual]

Hello everyone.

I have been staying off this board because I haven't been feeling good.

So it's been about a month since I started Ceftin and Zith. The first 2 weeks  I felt GREAT on it. Literally like no symptoms.

The past 2 weeks I feel like I am spiraling downward. My neuro symptoms are back big time.  

I am starting to question if I have Bart or not too. Remember that my LLMD said I had clear symptoms of Babesia but won't treat for some reason. I am going to list my symptoms and I would appreciate any opinions on them.

Symptoms: dizziness (but more like I'm walking on a cruise ship that is in rough waters), shaking/tremors in hands, bad TMJ pain along with numbness tingling around my jaw and nose, WEIRD feelings in my head (cannot describe them), pressure at the base of my skull and pressure at the front of my skull and pressure in my temples, constant ear popping in my left ear. Pressure in the roof of my mouth (this is the symptom that Cave76 is the only one I've found so far who also had this).

I have also started having some burning sensations in my toes that last like 10 seconds each time.  I also have been having terrible night sweats.

I feel like I'm dying.

My husband had his appointment with our LLMD today. His IgeneX came back positive (He didn't get copies of it ugh). Our LLMD said he has only had Lyme less than 6 weeks. I don't get that since he had symptoms way back in April before I even had symptoms. Then I started having the same symptoms and we thought it was something in our house so we moved. He put him on doxy and also wrote both of us a script for B12 shots? He also told me husband he would get better in 3 weeks?

Has anyone ever done B12 shots? I thought that was for fatigue which we never really had with this.

I am so stressed out. Plus, I know it is bad to say but if my husband does get better so quickly, I don't know how I'm going to feel about that. I already feel like resentment I guess that he isn't very sick at all when it's a problem for me to even walk anymore cause of the dizziness. I keep walking into things if I'm in a store. I know that sounds selfish but I cannot go on living like this. I cry every freaking day. It's not fair.

I have called about 30 other LLMD's within reasonable driving distance of me and they are so outrageously priced, we cannot afford it. Because it is the 2 of us now and my husband is losing his job so we have no money.

[Ricobord]

Most of your neuro symptoms could be Bart. Burning sensations are often from Bart, especially in the extremeties.  Night sweats are usually Babesia. I've heard lots of stories about people who experience a big flare in coinfection symptoms after they start treating Lyme. It could happen weeks or months later. I wouldn't be surprised if most of what you're describing are Bart symptoms.

If you're not already on Magnesium, get some. It needs to be malate, orotate, citrate, or aspartate.  The cheap 'oxide' version doesn't help.

As far as your hubby, I'm glad he got a Doxy Rx.  But I'm concerned that 3 weeks won't do it for him.  If he's the breadwinner, then I strongly encourage you to do whatever you need to do to get him longer treatment so he can get well and be able to work.  The last thing you want is for him to have a big relapse while he's job hunting. Sell something if you have to!  (I'm not impressed with your "LLMDs" PA who thinks he will be cured in 3 weeks.)

On the sexual transmission topic, the "official" word is "no."  But a very recent paper by Stricker, et.al. suggests that it's very possible.

Hang in there! Sorry you're struggling. I know what that's like. I had a really bad herx day today, and it's so discouraging to take what feels like 5 steps backwards.  It's not a straight line, but keep at it!

[Elleon_arual]

Hello! Thanks for replying.

No my toes look completely normal. They never swell up or turn red, just feel like its burning.

[MeganY24]

I can't tell you which symptoms indicate Bart because I have both Bart and babs but I can tell you that I experience the same symptoms.

I feel like everyone around me assumes I'm drunk lol. When yours toes burn, do they look red and swollen? I have something that's called (fill in the Lyme brain blank) phenomenon.

Sorry I'm not much help, but you're definitely not alone.

[Elleon_arual]

I'm also VERY hot. All the time but it really hits me in the afternoon. Like waves of heat coursing through my body.

[Elleon_arual]

Mojo,

What symptoms sound more like Bart to you? I am trying to figure it out because all my symptoms to me feel like they could be either one!

And yes, I would like more on Cowden protocol if you could message me.  I am all about the herbals!

[mojogal]

Sorry to burst your bubble but having both Babesia and Bart's, your symptoms sound more like Bart's.

I found out something very shocking to me a few days ago. After 18 months of abx, I did not improve, in fact I got worse. My LLMD and I decided on me trying Dr Lee Cowden's herbal protocol. I have been researching him like crazy because I actually talk to Stephen Buhner on FB and Stephen is a master herbalist and I like what he had to say but the things I found out about Dr Cowden really made me want to chose him.

If you would like more information on the Cowden protocol, please PM me and I would be happy to tell you.

[Elleon_arual]

Thanks so much for the comment. It really helped me feel better about all this.

I just had lunch with my husband and I was questioning him about the 6 week thing. Apparently, he didn't meet with our LLMD but the physician assistant because our LLMD was out sick. So she apparently doesn't know much.

I told him like we KNOW you didn't get bit by a tick within the last 6 weeks so how does she rationalize that diagnosis? And he said she even said the same thing, she doubts he got bit so recently. So why say it?

He asked her if he could have gotten it from me. And she said NO, Lyme isn't sexually transmitted. Wasn't there just an article published stating the opposite?? Plus, I still firmly believe that HE gave it to ME!

I too feel that men aren't affected as much as women. I have read some stories about men who were affected severely but they are few and far between.

I feel like I am getting worse because the Lyme is pushed down now and one of the co-infections is rearing it's ugly head. I was going to try to move my next doc appointment up (it's a month today) but my LLMD is going away for 2 weeks now.

I am pretty much self treating now besides the antibiotics.  I have bought a lot of herbals in hopes to get better. I feel lost and desperate because we can't afford to go to any other LLMD. Since I started feeling worse, I cut out all the herbals thinking it could be a herx and I need to back off things for now.

When I was on the herbals, I kept having this feeling like I was starving to death. No matter what I ate, I felt like I hadn't eaten in days.  Then I got EXTREME diarrhea, like I thought, this is it for me, it's all over.  I'm not sure if that could have been a herx or not?

Someone on another forum said she had the same thing and her LLMD said it was die off of Bart in the gut.  So now I'm wondering if I have Bart? Babs and Bart symptoms overlap so much, I don't know what I have.

[cave76]

I'm sorry that you're feeling worse now. I'm not one to sugar coat anything but this may be temporary. One of the main hallmarks of Lyme is the waxing and waning of symptoms so try not to get too discouraged. (Yeah, easy to say!)

About your feelings re: husband. I think that what you're feeling is fairly normal and I'm sure that all of us 'resent' to some degree those who have Lyme but get better fairly quickly or never have the awful symptoms that some of us get.

I've always noticed that men usually either don't get Lyme as bad or get over it faster. (I know----- there are plenty of men who really have it bad----- but I'm talking in general.) Some feel that women's hormones  have something to do with that. I don't know.

Don't feel bad about those feelings. In the beginning I used to cry whenever I would see a woman much older than I was run for the bus or something similar!!! When I could barely walk! I know we both wouldn't wish how we feel on someone else but I used to have this horrible thought------ I'd like to have them feel like I do for just a month! Horrible thought, but real. That wasn't going to earn me much Karma but it was there. :(

And what that LLMD is saying ---- knowing your husband has only had Lyme for six weeks? Will get better in three weeks?? That's such a crock! There's nothing in any test that can tell how long a person's had Lyme. And if your doctor is right about curing your husband in 3 weeks----- send me his name: I'd like to  make an appointment with him!

But---- how you feel today won't be how you'll feel in a week or a month. That I can almost guarantee you. Things come and go. Hopefully this 'thing' will cycle out quickly.