Many years ago I had a sudden deafness in one ear Does this sound like her? https://www.nidcd.nih.gov/health/sudden-deafness I went to the ENT who wanted me on steroids. Apparently there was a 10 day...
I just went through something similar. I went to chiropractor and he dry needled the muscles. It was still painful that night but the next day it was so much better....
My headaches started when I took MB and stopped when I discontinued it. I am not on any abx so it was clearly linked to MB...
How much MB are you taking? After ramping up to 30 mg I felt amazing when I took it (2 weeks on 2 off). Because of success I was to take it daily (5 days on 2 days off all the time). After doing that...
I just read this over on lymenet.org https://www.mdpi.com/2079-6382/12/6/1021 Abstract This study aimed to demonstrate that severe neurological motor deficits in the context of late tick-borne...
I agree with Girlie. Get to a llmd is extremely reputable. It will be expensive. I asked Dr. Jemsek about treating a person with ALS and he said at some point they are too far along with the disease...
He had me on flagyl two days a week (thursday, friday) and I lost hearing in one ear. His theory was that I had a bunch of cysts in my ear and they burst. he even agreed that steroids were the only...
During treatment I ate a protein and vegetable. I really kept it simple and boring. I did cook so I had leftovers however they were immediately sealed in plastic wrap or a baggie (maybe you have an...
When I first started treating it was with my PCP who wasn't lyme literate nor was I. He gave me doxy and I didnt get better nor did I really feel anything that I can remember. So he was willing to...
My LLMD had a patient from Germany. She moved here temporally to be on his IV protocol. He sent her to the chiro I use. Somehow she ended up at a doctor who was doing a new surgery for CCI. After...
Did you call Dr. J? I wasn't clear from your comment above. He gave me a new protocol for ivermectin (I think it was to take it every other day) and a 10 day script of minocycline....
That sounds very complicated. Given the issues I have and that I am in the US, I am surprised you can even get that done. I shouldn't be so snarky about them. Wow 3 years! I am happy to hear he does...
I should have worded that differently. It wasn't meant as a suggestion to you in particular given your situation. More to jemsek patients in general given my experience with them. I have had my share...
Yup. My big suggestion is that if you need a refill or have issues with them calling in your rx (like they don't do it, not sure what the issue is with this now), ask through the portal so there is a...
Before zith I was sleeping better than I have in a long time. It was amazing. Went to llmd and he decided to switch it up and took me off of mino and onto zith. When preparing for my appt I looked...
I have had insomnia for 30 years. After a dose of zith last fall, it is particularly bad. I can't seem to recover from it. I am so beyond annoyed about it. Anyway, I am going to a sleep neurologist...
Sorry. Lactate ringers https://www.mayoclinic.org/drugs-supplements/lactated-ringers-intravenous-route/description/drg-20489612 He runs them for detox. Every other day and weekend. I left my port in...
This paper was posted on Dr. Richard Horowitz's FB page https://www.mdpi.com/2057782 And his comment: Can anyone figure out the dosage of MB that was used?...
I wouldn't say I didn't feel improvement. I may have had more frequency or length of "blue sky moments" as he calls them but I don't remember. For me treatment was rough. Thankfully he runs these...
I don't know if I felt better or not. I was so wiped out from his IV treatment. I pulled out my IV protocol which is 10 years old. Looking at it I don't know how I survived. IV TIG was always used...
I had this with IV (dr j). It was toward the end of the protocol. They called it the tiger. It was yellow. By then I was so wiped out from everything. It was rough...
Did you have to go through an Independent Medical exam for the private LTD? You probably know this but even though you have been approved for 2 years (I assume this is the private) the insurance...
Do you have a link to that study? Do you think cultured products populate the gut better than traditional probiotics? Do you have a link to that post? I was thinking about trying the soil based ones....
I could have written this post. I am really starting to regret my long-term abx. I am sure pulsing helped but IV was rough. I needed them but I should have looked for other reasons sooner (like gut)...
Diet. Gluten free wasn't good enough. Anti-candida diet did me in. I suspect a lot of my remaining symptoms are diet related. Exercise. I now have osteoporosis which I contribute to years of being...
I have one. My big issue with it is that those wood benches/walls at 90 degree angles and are hard. This makes my pain in neck and traps worse. I have no support for the neck and back. I bought one...
Have you noticed if your memory improves (or cognitive) with your abx week? I felt like wonder woman after mine. Then it decreased the further I got away from that week. He (Dr J - I think you see...
Is the stimulation of the vagus nerve a "forever" thing or were you able to do it, get the desired results and stop?...
I saw my PCP and she wants to hand off my brain stuff to a neurologist. My misgiving is going to a neurologist. I dont feel like dealing with the anti-lyme sentiment. I guess I will have to suck it...
I am considering going to a neurologist. I fear this with every bone in my body but because of my ongoing cognitive issues I would like for more testing Before I subject myself to an anti-lyme...
When I was put on this many years ago I was told it is a "cleaner version of rifampin" and havent questioned it since. It also is more expensive. My son used rifampin with his LLMD and he got better...
I briefly scanned through my old protocols. It didnt seem that I was ever on zith until IV. Whenever rifabutin was used it seemed to be paired with omnicef . Currently I am on 1 week zith and then 1...
I second this. I ended up at 20 pills to get things moving. I think he said though that the intestine is a muscle and needs to be exercised. Mine had not been exercised in a long time. Eventually I...
I havent herx'd in a long time. Years I think. My body just cant take a lot of treatment. It is done....
Yes I see Dr. J. I have been treating with him since 2012. IV and orals 2 years ago he took me off his maintenance protocol. His new thought was mycoplasma. He doesnt think I have much "residual...
All my remaining symptoms improve with diet - except cognitive No I am not getting better. When I took LLMD's regular maintenance dose (1 week of 3-4 different abx) I would get a huge boost...
exactly. Which is another reason I am considering reducing dramatically. This stuff isn't cheap. That is interesting. This is what I have been doing with supplements and probiotics are my next group...
For a few years I had been on a 1 week on 4-5 weeks off (maintenance). That week contained 3-4 different abx. Now I am on week 1 of zith (MWF) and then week 2 rifabutin (MWF). Then 5 weeks off. I am...
Maybe nothing tick related is wrong with me. It is just bacterial overgrowth caused by years of abx. And for some reason it takes a dose of multiple abx to reduce the overgrowth enough to improve my...
Wouldn't my email still be essentially public? Maybe I am not understanding...
Has anyone ever taken Astaxanthin? Someone mentioned the product ValAsta which is a liposomal delivery product of Astaxanthin as way to help my inflammation. It sounds wonderful but I am hesitant to...
The doctor gave you a rx for it? I get mine from https://www.infuserveamerica.com/ I think you need a rx though....
Interesting. My abx schedule this cycle is week1 MWF zith week 2 MWF rifabutin repeat every 4 weeks. Doesn't seem like enough to do anything but he is the doctor. Ryan, I don't think this forum has...
The remaining symptoms that are not resolved with diet are cognitive, fatigue, and insomnia. Besides that I dont have any symptoms of another infection. Maybe it is a leaky gut thing and my gut is...
I feel your pain. The brain is something I just cannot get back. The only way I could get better functioning was when I was on the combo of rifabutin, minocycline, omnicef and timdamax. I would do...
My LLMD has had me on famatodine and zyrtec twice a day for a long time. I cant even remember when i started it....
Me too! I went 10 years (no lawyer) and Cigna finally bought me out. Those neuropsych tests are really interesting. (Unfortunately I still have cognitive issues with no end in sight)...
I have severe constipation. Nothing moves. Right now I use a lot of dulcolax. Sometimes that doesnt work. What does help me is if I add stomach massage. It is really easy. I can feel where everything...
Can you go to the the gyn and get tested? My LLMD refused to believe I had yeast based on symptoms. I went and got swabbed for every possible thing and it came back with candida glabrata. I loved...
Lymie24, Are you with Dr. J in DC? I cant remember....