Tag Archives: antibiotics

H. Pylori Treatment & Amoxicillin 

14 Jul

  
H. Pylori Treatment & Amoxicillin 

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. 

Antibiotics 

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. 


Visit To LLMD – New Treatment 

11 Apr

  

Visit to LLMD 

First let me start with a quick update; I’m still recouping from that car ride to the Lyme doctor. For those who are new, my doctor is about a 2 hour car ride through winding roads in wine country or 4 hours plus round trip depending on traffic. I know some travel much further but for me I am homebound and nearly bedridden again so leaving the house is very hard. My brain is still inflamed, I’m more lethargic than usual and can’t seem to get enough sleep although I’m skeeping 12 hours a day. 

My LLMD says although many other doctors have given up on me or called me “too complicated” she says she’s not giving up on me “yet”. This visit was one of those forced visits so I can get the face-to-face to please the stupid pain meds law. But we also went over blood results. That test I posted I while back although it mentions cancer a lot when looking online, it’s an inflamation marker test kind of like the c4a. Mine was high but not very high, which is odd because my body is severely inflamed and in severe pain daily so I think those tests aren’t very accurate as to what we actually feel like. 

She said she wants to help my brain inflamation and swelling but being a natural doctor she doesn’t like prescription meds as much. So she has me back on Chinese skullcap, quercetin and Curcumin. I asked for a migraine med but she didn’t seem to think any were helpful. I get migraines, cluster headaches and regular headaches daily but the migraines maybe 5 times a month. The brain swelling/pressure has been with me for 6 years. Sometimes it’s so severe I can’t even talk. I can tell the difference when I have aseptic meningitis versus the daily brain swelling or herx from the Minocycline in my brain. All are very painful and can cause one to want to end your life but I won’t give up guys/gals I promise. 

She said although my Lyme is 32-33 years old (and I’ve been reinfected in 99′ & nearly died) that it is not responding to anything and therefore not treatable for a “cure” AKA remission. So I’m on what they call a maintenance dose of meds to keep Lyme calm. I was on Minocycline for the Lyme in my brain but will be adding cyst busters and biofilm busters again. She thinks the doxy and Mino are not enough and not reaching the Lyme since mine are in very old cyst form. I will also be on nystatin still for candida that never seems to go away. If you are a long time reader you know I had a severe case that went bad and is TMI. 

I will also be taking Lyrica again but she put me on a low dose since I had side effects. The Lyrica is for my nerve pain and FMS. So I have pain meds for muscle, bone and now nerve pain again. For those wondering how you tell the difference? Nerve pain is the tingling, stinging, feeling of needles, numbness, nagging, shooting pain that comes and goes, sensitive skin, burning skin….etc. My worst pain was in my arms where my RSD was but since I had a few hernated discs explode in my neck (which is like hot lava under the skin) it caused my arms to become numb and have very little feeling to touch. I don’t feel needles in my upper arm anymore. I think it’s called radiculopathy

I’m trying to recoup and save my energy for my IVIG infusion on Wednesday. I get worse brain swelling every infusion so it’s a love/hate relationship with IVIG. 

I hope you all are fighting with everything you have and finding better days. Stay string my friends! 

  

To PICC Or Not To PICC

12 Jul

picc for procedure

 

To PICC Or Not To PICC

I am at the point right now where I am really sick and feeling like my old self before starting treatment. I was told by my LLMD and LLND that I need a PICC line again. I really cannot afford a PICC (the IV meds) and last time I could never find anyone willing to change my dressing. Plus I had daily clotting and my blood is not the best for IV’s. I could barely push the heparin through most time and the IV would back up and get air in the line since I clotted.

I hear doing IV antibiotics when I have had Lyme for 30 years is not really proven to help anyway and that the Rife is the only thing that can possibly work? So I am at the point where I don’t know if I should go back on a protocol, get the PICC and go broke or stay on the oral antibiotics for now.

It is the not knowing that really gets to you with lyme disease. What works for one may not work for another. So far not one thing has made me feel any better, given me any energy or any kind of hope that it is working. But I will not give up I just don’t know what to do right now, I am too exhausted to think about it. lol

 

 

 

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Update: Homeopathic Borrelia Treatment Finished

30 Mar

desert bio

 

Update: Homeopathic Borrelia Treatment Finished

I thought I would share my experience now that I have finished this treatment. If you want to know more about the treatment and where to buy it click HERE.

My memory is not the best but I believe by vial 3-4 I was herxing. This was not my usual “omg I am dying” severe herx I get while on antibiotics but it was a herx. I feel it was working. By vials 5-10 no herxing and no improvement. I can say this may work for some and maybe since I am considered a “complicated case” but my LLMD and my new LLNP that this was not aggressive enough? So I say for $49 it is worth a try.

I started back on Clindamycin and Minocycline right after since I was losing my ability to walk and really having a tough time. Within 3 days back on antibiotics I had a severe herx and spend all night in bed with my head splitting open and crying. I was so close to going to the ER but as I have said before they never help me and roll their eyes and yell at me when I mention Lyme or antibiotics. So I used all my detox methods and hoped for the best.

I am having a horrible few weeks (ore horrible than the usual horrible lol) and I cannot wait to see my new LLNP. I tried to get in earlier but he is booked as usual. I have no idea how I am writing this now but I needed a distraction from all of this.

 

– I want to wish all of you Lyme warriors a Happy Easter!! Remember to find just the smallest reason to smile through the pain and know that better days are ahead. Never give up the fight.

 

 

 

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What Lyme Looks Like: Photos Of Some Of My 2 Years Of Lyme Treatment

28 Mar

 

What Lyme Looks Like: Photos Of Some Of My 2 Years Of Lyme Treatment

This is what 2 years of Lyme treatment looks like for most with chronic lyme disease. This photo is only some of my meds, injections and a small portion of IV stuff. I couldn’t find the huge box of IV stuff. Plus early in my treatment I forgot to save my pill bottles. I always wanted to post photos of this so that is why I saved most just as a visual reference to what us Lymies go through and take to try and have even one “decent” day or quality of life.

By the way out of all of these meds only maybe 1 or 2 made me feel “okay” for a day or two enough to walk outside and smell the fresh air. Just being honest. I won’t give up hope though it took my aunt 8 years of antibiotics before she felt any relief and she’s only had lyme for 20 years to my 30 so I expect maybe 8-10 years?

 

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pills 1

pills 2

pills 3

P1000014

Back On Antibiotics – Herxing

26 Feb

antibiotic

 

Back On Antibiotics – Herxing

I couldn’t handle being off of antibiotics any longer. I wanted to give my body a rest after the candida scare and after the Picc and clotting. My PCP recommended taking a break also so I went with it but on my own. After (insert number of days here because I forget) I have been of antibiotics my symptoms were getting worse.

Here is some pretty solid proof that 10 days of antibiotics does not kill or “cure” chronic lyme disease and tick-borne diseases stupid IDSA/CDC. I have been on 2 years of aggressive treatment and I am nearly just as bad as when I started 2 years ago.  I would say I have progressed 5% – 10% at the most but now after stopping antibiotics I am going 2 steps back.

My neuro problems such as the turrets twitching in my head, tremors, vertigo and other issues seemed to calm down a lot better while on antibiotics. Now that I have been off I noticed they started to increase each day until recently when I had them all back full force. My head will nod on it’s own about 3-4 times (turrets twitch).

My tremors which were calm for the first time in 16 years are back and shakier than ever. My POTS and blood monitor reading is more tachy now and my reading today was 140/101 with 89 pulse and 96% oxygen. I was low with bradycardia last year and in the 50’s range. It is getting tough to walk again and I am more bedridden. The vertigo has increased (besides what mino did) and I run into walls no matter where I walk. I have to hold onto walls and objects to walk.

My brain fog and cognitive issues are also getting worse. I have no idea what day/month/year it is. I was starting to stutter daily which has never happened to me. Still have dyslexia. I cannot remember names, faces or words at all. I now just tell a story and say “that one thing” a lot. I already had bad memory short term and long term. Things were just getting worse.

So this week I started back on Suprax and Coartem. I will be back on oral Clindamycin and Minocycline soon. So far I have only herxed one time (which is as I write this). My head is splitting open, migraine and feeing very warm. But I had to get back on the antibiotics since I was in a lot more pain in my bones, muscles and body. My “stone man” was increasingly worse. I am having cold spots and neuropathy down my spine.

I have listed all of my symptoms on a previous post and there are 100’s so I won’t list them here but they are all still with me. I was hoping to go out for walks when Spring gets here but that is looking like it may not happen with this pain, vertigo and dizziness.

I will also be trying a Homeopathic treatment that should be coming in the mail real soon and I may post about it. I am also thinking about trying rifing again one day. Need to stop these bugs from having a party in my body.

I will try to update as much as I can but I haven’t had many “good” days. I hope all of my spoonie and Lymie friends are having better luck in your lyme healing journey. Keep up the fight and never ever give up life is too beautiful and there are many good days ahead. Take care for now friends.

 

– I will continue to spread Lyme awareness in Jeremiah’s name. He will be missed.

 

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Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb

slip-man-hi

 

Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…

 

 

 

 

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