Just Frustrated

I have been unable to form a single word since Saturday evening. This isn't anything new for me, as this has happened several times before. It is not that I am too exhausted to talk; although I know what that is like also, I just can't form a single word. My vocal cords work because I can hum to songs. I have pressure in my head every day as if my brain is swollen. I think that this is a lyme thing since it happens once a month. When I try to say a word (ex.: The) I get stuck on just trying to get the "T" sound out. This will last for as long as I have a breath. All other days; that I can talk, I stutter.

I detox daily. I worked my way up to 140 degrees for 50 minutes, drink lemon water, 30 minute salt bath, Alka Seltzer Gold, oil pulling, probiotics, sometimes I try activated charcoal (I think it leads to more GI issues for me, so for now I stopped).

My LLMD started me on A-Infalm (herbal drops) to get the inflammation down in my body. I was hoping it would help with these episodes of not talking, but I guess not :(. She also had me start Rifampin 150 mg. Is Rifampin only for Bart or can it be used for Babs also? I know she thinks I have Babs because I am currently on A-BAB (herbal drops).

I guess I just find all of this soooo frustrating to figure out!

So anyway on a lighter note; I was denied by social security. I know this was far fetched but my husband helped me file a claim. I find it ridiculous that according to "THEIR" doctors who reviewed my symptoms came to the conclusion that I am capable of working. I am a surgical tech. Would you want me in the O.R. when I have my shakey hands, Alzheimer's moments (mixing meds.), Dementia (I had a herx that I didn't know if I was married to my husband and if I lived in my house), not able to talk, having a seizure, having a blackout, oh I could go on and on about all these weird symptoms that I like to now call "NORMAL". Here is a good question: I haven't driven my car since March 2015, if I got into an accident would I be held liable, even if it wasn't my fault? YOU BET I would. Ooops, I just answered my own question!

Don't get me wrong, I am not someone who want pitty or collect from the system for no reason. I just need some help right now. Some of these meds. can be expensive and supplements I am on. But according to another letter from social security my husband makes too much money! WHAT!!!! We are not rich, but we are not poor (YET!) We have older vehicles and live in a small house that was built in 1950.

I got tested for MTHFR gene mutation. Just haven't received results yet.

Well, thanks for letting me vent!

Post Edited (Little Bear (LB)) : 11/11/2015 1:33:37 PM (GMT-7)

So sorry you are struggling so much Little Bear!

Rifampin is used to treat Bartonella - I haven't heard it used for Babesia.


Did those symptoms happen prior to treatment? If it's started since treatment - it suggests a herx reaction - then I would suggest that you back off on treatment...lower doses...and continue to detox until the symptoms improve.

Girlie-

Thanks for answering the question about Rifampin! I thought it was for Bart, maybe this is why my heart feels like it is beating faster and harder.

I have been herxing with symptoms since March (when I was just on Doxy) given to me by the doctor that first found out I had lyme. When I was on Doxy that is when the stuttering started, and sometimes I would repeat the same word over and over again out loud! These herxing would only last for 10 to 20 minutes. I couldn't stop I even tried to put my hand over my mouth.

And all my old symptoms from my past returned since starting Doxy. The same headaches I had in grade school, the chronic fatigue I had in high school, the blackouts I had couple years ago. I still have my GI issues also.

Since I started seeing my LLMD in April, I started with different antibiotics and would loose my ability to talk. The longest I went without being able to say a word is 1 week. It was like we opened Pandora's box of symptoms, that I don't know where to start or end.

Pretty much I look at all these symptoms as normal. When new symptoms show up I like to figure that they are also normal. Just killing the cooties!

So, if I'm understanding you - the herxing has been non-stop since you started antibiotics - which includes the stuttering.

Is the Rifampin a second antibiotic that you're adding? If so, you shouldn't be starting it until your herxes are under control. You need to get the toxin load down.

The way to do this - increase detox, if that doesn't work, then in addition to increase detox, lower your antibiotics, or herbs that are contributing....and don't up again until it's under control.
You need to get on top of it.

I wouldn't add an antibiotic when you're herxing - wait until the herx has stopped.

Cd-

Thanks for the info about lawyers. Sometimes my little bear brain doesn't work so well! :0

Thanks for the info on milk thistle! I will write it down for a question for my LLMD. I don't know where I would even put it in my schedule of meds. and detox. I even had to write on my daily schedule when I can eat due to meds. and supplements.

This sucks!

Milk thistle is as benign as food (except for those with ragweed allergies).

You could take it with a meal....or with your supplements.

I completely understand the challenges of timing everything. Heck, I juggle a bunch of pillminders filled with supplements and use my phone alarm to remind me to take stuff lol

Yes, it all sucks but the end result is worth it.

Thanks finisului17! -

I agree that it is herxing ! I haven't stopped herxing since I started treatment in March 2015! I guess I am unsure what herxing is because ever since I started antibiotics this has been continuous. Everyday is like Christmas morning! I don't know what I will get. I don't know what symptoms I will have, how many different symptoms together, and for how long? Some symptoms: last for minutes/ off and on through the day/ or for days. It doesn't matter what antibiotic combination I am on.

I also herxed ( had a seizure) on A-BAB (herbal supplement)! I worked my way up to 3 drops in morning and 3 drops in evening. Obviously this was too much so now I am at 2 in morning and 2 evening until further notice from LLMD.

Hey Chaos100!-

You are not stupid! You are just special like me! LOL

What does your LLMD want you to do? I see you are currently off antibiotics. I have also wondered about just going all herbal, but had a rough herx with that. I have been on treatment since March and the only positive I have is that I can currently pee! It is either A-inflam I am taking or Rifampin. I am thinking the inflammation drops. I use to always feel like I couldn't empty my bladder when I peed. I know too much info.!

I felt like you also. Once I started treatment it has been pretty rough.

Hopefully someone can chime in for your questions; but if I were you, I would post a new thread so more people can see it and help!

Best of luck and hang in there!

Chaos100 - You said you stopped the antibiotics (after continuing worsening for 7 months) -
Are you getting some relief since you stopped these past couple weeks?

What does your LLMD say about your worsening and no improvements?

What has he prescribed for the MTHFR ? anything?

If you were only doing epsom salt baths a few times a week - and that's it for detoxing - that's not enough.
So - up your detox.
See if you can do a few more epsom salt baths.
Are you drinking lots of water - and some with fresh lemon juice squeezed in?
Are you taking a binder?
How about Nutramedix Pinella and Burbur?
Alka Seltzer gold?

How about milk thistle - taking it for your liver function?
Probiotics -Taking enough for your gut health? I recently added organic Kefir - it's a great source of good probiotics. (I also take probiotics in capsule form)