Don't know what else to do

This last week has been TERRIBLE. I don't know what's going on. I was feeling better after 72 days of IV rocephrin. They took out the picc and a few days later i was a mess, major relapse. I have been on ceftin, biaxin, flagyl and nystatin since. The last 5 days i have been feeling horrible. I have been barely able to get out of bed to go to the bathroom. Heart has been going crazy, terrible joint and spine pain, loud ringing in ears, terrible diarrhea (TMI sorry), weakness, body feels waves of heat, insides are quivering, headaches, and generally feeling like dirt. A few times i've had chest pains/tightness, pain in my left arm, symptoms of heart attack but i know my heart is ok because it has been checked out. I feel weak and worthless and like an anchor dragging everyone around me down. My family looks at me with pity in their eyes and that is like a knife in my heart. I've put them through so much these last 5 years, fell off a roof landing on concrete doing construction, healed from that then some crackhead passed out at the wheel and hit me head on going 60mph, was still trying to shake those injuries and now this. I keep messing us up financially and bringing everyone down. I'm getting worse not better. I have only been treating for four months and i know that is a relatively short time but i'm going in the wrong direction. I just keep getting worse. I have done everything the docs have asked, meds, diet change, supplements, probiotics, detoxing, everything. Plus bvt. Is this ever going to turn around? Will i ever be me again? I'm letting everyone that depends on me down, a totally new experience for me. I'm usually the rock, dad, the one that fixes everything and takes care of everybody. Being a worthless invalid is really getting me down. Today was my wife's birthday and i totally forgot! I feel like such a POS for that. We've been married for 22 years. I'm getting so frustrated with myself. I'm starting to lose hope. If i could just lose the crazy heart issues and pain i could deal with the rest. Is there anything i can do to calm down the heart and what may be anxiety as well? I really don't know. I will say that i took a potassium supplement last night and today and feel less like i'm dying but still pretty bad. I took it because of my digestive issues from the last week and knowing that diarrhea can cause low potassium which in turn can cause heart/anxiety type issues. Sorry about whinning. Should i go back to doc(funds are low) or should i just ride this out and hope that it will get better? I WANT TO BE ME AGAIN! I have a ton of work to do, people to take care of, a job to get back to (at least for now) and a life to live. This up and down ( mostly down) roller coaster ride is really wearing me down. I'm getting so mad at myself for being weak and not being able to beat this. My heart goes out to all of you that have been fighting this for years. What else can i do?

July 20th was my last dose ithink. My wife keeps a med/symptom jpurnal but i'm not sure where it is and she is not here at the moment. I know they don't feel that way but i do, can't help it. I plan on calling llmd tomorrow. Just wish i could make some lasting progress.

Mike, I'm sorry to read you're having such a rough time of it. You seem like a really good man, the knd of guy I'd like to have as a neighbor or friend. Its understandable you'd be so upset about not being able to carry the weight of family responsibility on you're shoulders when that's your share of the division of labor.

I've had anxiety as a major symptom as well. I'm still treating for Lyme but am doing a ton better. Through the practice of mindfulness meditation, I learned something about the anxiety. For me there's 2 aspects to it: 1.
that wired, agitated, mega caffeine like overdose sensation and
2. The accompanying ruminations and worry about impending doom, and everything I can't get done, will I ever get better, etc. etc.

Through mindfulness meditation, I learned that the worry didn't cause the agitation, but the agitation provides fertile soil for that rumination and anxiety to grow. While you may not be able to halt the agitation the worry is something you can manage , believe it or not.

Also, I noticed you're on Flagyl and biaxin. I recently started biaxin and had to stop after 24 hours. All my strategies were minimally effective to deal with the severe agitation, anxiety, insomnia, and depression that were clearly side effects, not herx reactions. Doc said says try again at 1/4 pill 1x / day but I'm chicken to dive back in since it took me over a week to get back to baseline after I quit taking it. I'm gonna hold off just 3 more weeks until I try it again, I'm retiring from my job 9/1. Woo hoo! I couldn't function at work on that stuff. I was also prescribed omnicef but haven't tried it yet.

Read biaxin user reviews here to see the range of what non lymies experienced :

https://www.drugs.com/comments/clarithromycin/biaxin.html

Flagyl : my wife was recently hospitalized for a diverticular abcess. Iv zosyn in hospital was well tolerated. She was sent home with oral Flagyl and the side effects were severe brain fog, dizziness, fatigue, etc. She thought she was dying til they switched her to Bactrim. Again read what non lymies experience with Flagyl, it can be gnarly.

https://www.drugs.com/comments/metronidazole/flagyl-for-bacterial-infection.html

If you haven't already, you might want to stop those meds, then wait a week and restart 1 at a time and try to figure out which are giving you nasty side effects Vs herx reactions.

Hope there's something useful for you here.
Best Regards,
David

I'm not always in agreeance when people say you need to feel like crap before you feel better. Did you feel this bad when starting rocephin? If not, I personally would try a new antibiotic. Just my opinion. And maybe start one at a time and give it time till you feel comfortable. I was on omnicef/plaquenil/azith and felt horrible. My hearing got weird like after a loud concert. So I stopped azith (took a good few weeks for hearing to go back) and just doing omnicef now. Back to a fairly consistent baseline and feel ready to add something back in. So maybe one of those drugs is just not agreeing with you.

Ceftin and Biaxin is a little redundant as they both are for lyme ...the biaxin and flagy maybhit some babs but nothing is on board for bart ....i would do the ceftin on non bvt days and pulse the flagyl only on weekends and drop biaxin and get on houttynia ....trust the bees will get ketes and biofilm and even babs but bart is the one that goes on pause with roceph then comes out when coast is clear. ..all my agitation and anxiety was bart....it really destroyed my humanity when i couldnt lift a gallon of water ...i know ....it wasnt til 9 months in with bvt i notice it su:ked a lot less....stay strong its just a bad trip

Thanks walking, i do have his book and i am taking some herbals as well. Jk is one of them. I was doing it in tincture form but had to stop due to taking flagyl(no alcohol of any kind). I have the pill version vut think i was hrrxing on it so for now i stopped it until i am done with the flagyl. I hear you it would be nice to lose a few symptoms and feel like i'm getting somewhere. Actually since starting treatment i've only got worse. Sooner or later i'll get there.

Good luck to you walking. Not giving up, that's not an option. People are counting on me. Getting very frustrated yes, giving up no.

Mike, I'm so sorry about how your feeling! I can so relate! The past month has been hell, just don't know what to do! My kids start school next week and we have so much to get done and I just want to crawl under a rock!! One thing that might help you, has helped me a little bit, is a magnesium iv if you have a doctor that does them. If not maybe getting a magnesium spray to spray on your body (although it can be itchy) as well as a supplement. Not sure if that will help much if at all but I wanted to try to help anyway!

I am so sorry Mike that you are going through this, this disease sucks. I feel like no one understands, my wife, kids and family and friends just don't understand how horrible it is. Just want you to know that I am praying for you. I know what you mean when you talk about your family looking at you with pity and it feeling like a knife through you. Hang in there, one day at a time.

Thanks so much everyone. I skipped my last bvt blue just wasn't up to it. Tomorrow is my next one i definitely will do it. Whats good for bart?

Buhner strongly advocates Sida Acuta for bart, but warns that high doses can make symptoms and fatigue worse. I've tried a few drops but not enough to tell you if it helps. Also, houttuynia is supposed to be a strong antimicrobial herb for bart, but have heard it can really cause a herx. I've used 1 drop of IHA (isatis/hout/alchornea) a few times, but again, not enough to tell anything about it. I'm scared of both of them because I'm so sensitive. When I get ready to really try it, I think I'll do one drop per day for a few days and slowly go from there.

Mike - Did you talk to your LLMD today? and how are you feeling?

Sorry to hear, Mike.

You said you didn't want to stop meds for fear of slowing down treatment.
Stopping abx for a day or two to let your body recover won't slow the healing. You need to let your body catch up with the detoxing.

Are you taking a binder ?