Major relapse

I did 72 days of IV Rocephin, they removed my PICC line last Friday. I felt like i might be able to get back to work Friday and Saturday so I called work and told them I would be back next week. My FMLA time is up. Started to feel bad on Sunday and then Monday and Tuesday all hell broke loose and it was almost as bad as it was when I first started treating. Unbelievable twitching, horrible joint pain and spine pain, ears ringing very loudly, weak and worst of all heart palpitations. My spine hurts so bad it takes a while for me to be able to stand up and then straighten out and stand up all the way. I walk around like I'm looking for nightcrawlers for a couple of minutes. I thought I was past the worst of it but I guess not. Every day this week I have got progressively worse. My llmd prescribed biaxin, ceftin, Flagyl, and Nystatin. I started all of them tuesday except the Nystatin because the pharmacy had to order it. He had originally prescribed doxycycline instead of the biaxin but I immediately broke out in hives when I took it. I feel fortunate to be dealing with the llmd that I am if I email him he usually responds within a couple of hours by either emailing me or calling me. If not within a few hours definitely by the next day . The antibiotics are tearing up my stomach. He also had me start taking grapefruit seed extract. I'm struggling with the Flagyl it makes me feel very uneasy/anxious and a on the hot-headed side. Anybody else struggle with flagyl? Could I possibly pulse the Flagyl to alleviate some of the side effects? My doc has me taking it (500mg)everyday twice a day for a month. I'm experiencing my worst twitching and leg jerking yet. It literally kept me up all night last night. This is so frustrating! I don't understand how I went from feeling so so to feeling horrible in just 4 days. I just keep thinking if the original doctor I saw would have listened to me when I had the EM rash and told him I had Lyme's all of this could have been avoided but no the clown laughed at me and said there isn't lyme around here. He has destroyed my health and finances. Incompetent jerk. This has been a total nightmare but i don't ha e to tell you guys that.

WV Mike said...
I did 72 days of IV Rocephin, they removed my PICC line last Friday. I felt like i might be able to get back to work Friday and Saturday so I called work and told them I would be back next week. My FMLA time is up. Started to feel bad on Sunday and then Monday and Tuesday all hell broke loose and it was almost as bad as it was when I first started treating. Unbelievable twitching, horrible joint pain and spine pain, ears ringing very loudly, weak and worst of all heart palpitations. My spine hurts so bad it takes a while for me to be able to stand up and then straighten out and stand up all the way. I walk around like I'm looking for nightcrawlers for a couple of minutes. I thought I was past the worst of it but I guess not. Every day this week I have got progressively worse. My llmd prescribed biaxin, ceftin, Flagyl, and Nystatin. I started all of them tuesday except the Nystatin because the pharmacy had to order it. He had originally prescribed doxycycline instead of the biaxin but I immediately broke out in hives when I took it. I feel fortunate to be dealing with the llmd that I am if I email him he usually responds within a couple of hours by either emailing me or calling me. If not within a few hours definitely by the next day . The antibiotics are tearing up my stomach. He also had me start taking grapefruit seed extract. I'm struggling with the Flagyl it makes me feel very uneasy/anxious and a on the hot-headed side. Anybody else struggle with flagyl? Could I possibly pulse the Flagyl to alleviate some of the side effects? My doc has me taking it (500mg)everyday twice a day for a month. I'm experiencing my worst twitching and leg jerking yet. It literally kept me up all night last night. This is so frustrating! I don't understand how I went from feeling so so to feeling horrible in just 4 days. I just keep thinking if the original doctor I saw would have listened to me when I had the EM rash and told him I had Lyme's all of this could have been avoided but no the clown laughed at me and said there isn't lyme around here. He has destroyed my health and finances. Incompetent jerk. This has been a total nightmare but i don't ha e to tell you guys that.

You are definitely dealing with a co-infection, likely Bartonella given your very quick relapse time after stopping IV Rocephin. I recommend treating Bart and/or Babs right away. Relapses are not fun, but you will get out of it once you treat all the co's.

It's unconscionable what we are pit through. I have no words or wisdom, but you are not alone and I wish you a quick fix for this relapse!

So sorry!

Denver1

Mike - Most LLMD's pulse flagyl. It's a cyst buster and doesn't need to be taken daily...plus because it's got an FDA black box warning - I wouldn't want to take it daily for months.

Did your Dr. discuss treating the coinfections - Bart and Babesia?

Sorry to hear you've relapsed and so quickly. DS pulses Flagyl Thur/Fri of the first week of the month (1 pill/2x day). He also takes a biofilm buster (you mention GSE which is one) from M-F that week. He doesn't take a biofilm buster the rest of the month - just the week he does Flagyl.

I'm sure there are many ways to pulse it and I bet others will chime in with how they are using it.

Hope you pull out of it soon.

You could take the flagyl twice a week...

Thanks yancync, im sorry thst your son has to go through this. Im hoping he gets well soon. Trav im sorry to hear about your disc, i know how bad that hurts. Hope you feel better soon. I have never been symptom-free but I did have a couple weeks where I was at least able to get out of bed and move around. The plan was never for me to be done with treatment I was going to come off the IV Rocephin and then start my new antibiotics the following week. Everything just went to crap in that week break actually after about 3 or 4 days. I just read the links and while I have some of the symptoms I don't know. I do have a strange nodule under my skin above my eyebrow and I do get drenching sweats and of course have the joint pains and all over body pains. I don't know what to do I have seriously seen at least 7 doctors. I am seeing an l l MD now I have the most faith in him but I still don't feel like he is super familiar with lymes. He is however always available and always responds to my calls or emails within a few hours or at the very latest the next day so I do appreciate that. And he seems like a good guy who is genuinely concerned. I will push for co-infection testing.

yancync if you are quickly relapsing from removing the Rocephin than you didn't treat long enough, dealing with co-infection(s) and/or persisters.

also understand the bugs will go into hiding if the environment isn't healthy for them to come out and play in. your daily IV abx could've put some of them in hibernate mode and when you stopped they're like hey its not raining anymore i'll go outside.

not sure how much i believe the quick reproductive cycle of co-infections like babesia or bart is the reason for quick return of symptoms. just my own research/travels it seems its more likely bugs coming out of hiding (in biofilms, deep in tissue or other protective areas from the immune system/abx) is the more likely culprit.

even if you don't have any symptoms from co-infections (and i have no idea why anyone would say that since its all shades of gray) sometimes you need to treat them because they're blocking healing of whatever is causing your symptoms.

Dr. J in DC believes babesia is usually the blocker for chronic cases and it must be removed before you can make any lasting progress.

your current protocol is really a lyme specific only protocol there's no tier one drugs in there for the co-infections and certainly no anti-malarial for babesia. my wife did biaxin/ceftin/pulsed tinidazole for almost a year and got nowhere. when she started treating babesia all hell broke loose so that tells you something.

i think mold/heavy metals does play a role in some people's lack of progress but personally feel its far more overblown than reality. to me you're most likely dealing with multiple pathogens that need to be dealt with alongside lyme.

you don't need testing mike its really a clinical diagnosis since the tests are quite inaccurate. i would go after the babesia first cause you said you have drenching sweats that's a classic babesia symptom.

sure plenty of non-abx options for babesia. artemisinin and cryptolepis come to mind.

Gosh Mike, I'm so sorry about the relapse. My first thought was since you had such good results with Rocephin, is there anyway you could get back on it? So many of us struggle to find the right combo to get any type of improvement. So if you know it works, and the orals are tearing up your stomach, it might be something to consider.

I also would guess that the relapse happened because you did not treat long enough and you were not addressing persister bacteria. Also, your immune system needs to be strong enough to hit the stragglers. Just my opinion. For persisters, docs are using bactrim or dapsone. I'm sure there are other things but I'm drawing a blank. But more importantly is getting your immune system up to snuff. I can't tell you how to exactly do that. I do know you must eat well, drink clean water (I drink reverse osmosis but a doc on recent immune summitt said he buys distilled and adds a bit of Apple Cider Vinegar (braggs) to add back in some life to it), take probiotics (rotating a few), Sleep (are you sleeping well?), and limit your stress (I'm sure you are stressed about work). Easier said than done, right?

Mold and metals do bring your immune function down too. I would not focus solely on that since you got almost back to normal on rocephin. But definitely explore as an additional way of getting your body to full health.

Post Edited (k07) : 7/28/2017 2:27:09 PM (GMT-6)

WV Mike said...
Girlie are you saying take it 2 days a week or only two doses per week? Yes there was mold in my home due to an improperly shingled roof. I tore off the roof replaced all the wood and shingles tore off the front wall of my house and replaced all of the studs and the drywall in the rooms affected and I am working on replacing the drywall in the rest of the house now. As for the heavy metals I do have quite a few fillings but my dentist has been slowly replacing them I do eat a fair amount of fish and I feel like I could have been exposed as I used to dig for arrowheads quite frequently in the Ohio River. We would dig in the silt under the water for the arrowheads that the river has eroded from the bank. I'm sure I was exposed to all kinds of bad stuff doing that for years. I really appreciate your help.

Was the mold prior to getting sick? I can't recall what your timeline was like, did you get sick right after tick bite? Lyme and mold seem to go hand in hand for some people. I think you get one and it drags down your immune system and then if your genetically susceptible to the other and get exposed it drags you down even more.

k07 said...

Rikky1 said...
>>For persisters, docs are using bactrim or dapsone

would love to hear more on bactrim because i haven't read anything that says that. Dr. H in NY and Dr. J in DC both use Dapsone for persisters in combo with abx/pararsite meds as the troops to destroy the buggers when the persisters are broken open.

I see Dr. H and told him I was nervous about dapsone. He put me on bactrim and said it can hit persisters too. But I think not as good as dapsone.

So what is there to be nervous about with Dapsone? (I'm not familiar with it)

Is it hard on the liver? worse then the Riff and Mepron?

Dapsone can cause anemia issues. I've always struggled with low iron my whole life. I'm in a dapsone group and some people do well with it and others don't at all. Dr. H does give high does folate and something else, I can't remember. And tests methemoglobin every 2-3 weeks. He straight up told me it causes crazy herxes too. I can't handle any stress or worsening at the moment - got way too much going on. One good thing about it is I believe it has no impact on gut. I don't know about the liver.

Post Edited (k07) : 7/28/2017 2:52:17 PM (GMT-6)