Quick update: getting IVIG infusion Thursday but like I said in a previous post I may owe thousands of dollars due to an error. I’m supposed to be on them for life or ongoing but I can’t afford that. I will start LDI injections (different from LDA) this week. You inject and take prednisone for 3 days with it. I hate prednisone for how it makes your face/body swell. I’m not progressing and feeling worse. In 6 years of treatment I may have progressed 5-10% but I think I took a step back. The only symptom that is better are my tremors which were like Parkinson’s but now doing better. Also I’m able to walk pretty good so I hope my spine doesn’t go out again and put me back in the wheelchair. Also football season and fall are coming and it’s my favorite time of the year with new tv shows.
After taking pretty much every brand and antibiotics on the market I had a few that were much tougher to take than others. I see people who take them for only 10 days and say “how can anyone do ten whole days of these”. If those people only knew what lymies have to go through. I have been taking antibiotics everyday for the last 5 years or so. I don’t remember a day not on them except when I had severe candida and c-diff I had to stop for a month.
Anyways after all those antibiotics my Lyme has responded to only a few and there are a couple that were tough. Doxycycline was the first antibiotic I ever tried and my Lyme didn’t know what hit them so I had a nice die-off rash on my body which was dime to quarter-sized marks on my body. They look almost like birthmarks but they go away after about 2-4 months. The second time I took Doxy and third, fourth I didn’t have any response to the med. I think it was just that first antibiotic in my body that killed off the non-cyst/biofilm Lyme in my body. The other antibiotic I have a response to is Minocycline for the Lyme in my brain.
One of the antibiotics I don’t like is flagyl. Now the one I don’t like is the sulfur smelling Amoxicillin. I’ve been on it before but right now I’m taking 4 pills 500mg each (2000mg per day) for the H. Pylori with Clarithromycin 500mg 2 times a day (1000mg per day). They gave me Lansoprazole 60mg per day to keep the antibiotics down. But all I taste in my mouth is the Amoxicillin all day/night long. Even if you drink water, eat a lemon, garlic…etc you still taste Amoxicillin. Even mouthwash doesn’t help and while you sleep it will come up your throat into your mouth. It’s not very pleasant and your sweat and other stuff smell just like it.
Amoxicillin is also giving my severe restless leg syndrome (RLS) or something similar where I will wake out of a deep Chronic Fatigue sleep and I toss and turn every second for hours until it drives me insane and I need to get out of bed and walk to the living room where I lay in my chair the rest of the day/night (24/7/365 is in bed or the chair, except doctor appoimemts or rarely going to eat for an hour with my godson & friend). While in the fair I have to keep moving my legs until I can get some nor I in me then it seems to relax some. I tried my usual muscle relaxer, magnesium, morphine before bed etc and nothing seems to help it. It only started while taking the H. Pylori meds.
I had a few other antibiotics that either left a metallic taste in the mouth or did damage to the muscles but I can’t remember the names right now. Once this H. Pylori treatment is over I will go back on Minocycline daily and Tinidazole. I just didn’t want to mix so many antibiotics each day like I used to do when first treating. Dr. H had me on aggressive treatment and it did damage on my gut and body yet he never seemed concerned.
For those with H. Pylori you may be on the same meds I am taking. If you want to know what can help get rid of H. Pylori I will list the meds below. Mine has caused severe D. But I’ve had IBS-D for a good 15-20 years ever since going to Mexico. Already treated for parasites and other stuff but recently found out I was positive for H. Pylori too. I swear every test I say “I don’t have that this will be negative” and it comes back positive or high or low so don’t ever think it can’t happen to you or you don’t have something. What I mean is with all my hundreds of symto a I don’t even notice when something is giving me a symptom. Like some people say “that gave me stomach cramps and bone pain” I wouldn’t notice became I always have stomach cramps and home pain..etc.
H. Pylori Treatment Meds (take for 14 days then blood test to see if gone)
Amoxicillin: 2000mg per day (2 – 500mg pills twice per day)
Clarithromycin: 1000mg per day (2 – 500mg pills twice per day)
Lansoprazole: 60mg per day (2 – 30mg pills twice per day)
Spoonies: start each day with a positive thought and positive word about yourself and find something in each day that makes you smile. Even if it’s just a summer breeze blowing through your window and it brings back memories, let that make you smile. We will all get to those better days.