What happened after I stopped antibiotics

Hi, I am sharing my experience because I think we learn here from other people's experiences.

Last week I read some posts from people who were going to get off of antibiotics (abx). I decided that I should join in since it has been in my mind for a while. You see, I got infected 2 1/2 years ago and have been on antibiotics for 15 months now. I never thought that I would be on them for so long. I am currently taking Amoxicillin and Rifampin. I am symptomatic for Lyme, bartonella and bloodwork shows high readings for EBV. I also suspect mycoplasma and Candida.

I take (and did not stop taking) Super B vitamin complex, Turmeric, a multivitamin, vitamin D3, Glutathione, and Green tea.

So last Thursday was my last day on antibiotics.

Day 1 (Friday) I felt the same as before except that by the end of the day my dizziness was dissipating to where it was barely noticeable. Went about my normal routine.

Day 2 (Saturday) I felt good most of the day which is how I feel recently while on abx. My basal temperature was 98.6 in the morning and stayed there throughout the day. It usually is 97.2 - 97.6 in the morning and 98.3 during the day. I noticed that I wasn't very hungry that day so I ate very little. I also began to experience some anxiety. By the end of the day I had two mild episodes (1 minute) of numbness in my left cheek and side of my face. My left upper lid also began to flutter constantly and so did the right muscle below my mouth. I began to feel neck pain in the back but also around the front of my throat and started to get these sharp nerve pains around my head and around my eyes. At night while sleeping I was awaken by sharp pains in my back and lower torso. Like what I was feeling in my head.

Day 3 (Sunday) I woke up and my temperature was 97.3 and stayed there all day. I stayed in bed late because I felt depressed with no want to get up. My head was hurting, my right eye was at times getting this veil that I had to blink multiple times to get rid of it. My joints, back and hips hurt. I decided to get up and walked around the house doing stuff. I was very fatigued and noticed that I had a lot of anger inside me. I wanted to throw stuff around. At the same time I felt emotional. I sat down in the sofa and tears just started to drip from my eyes. I wasn't crying, I just felt depressed and angry at the same time. sometime during the day I started to get these sharp pains in my lower torso and also behind my eyes. By now my neck pain was killing me. I also noticed that my privates hurted when I urinated and the stream was very weak. I had to go multiple times to empty out. I went to bed early and watched TV. My could not concentrate on the TV and noticed that I had to lower the volume very low because the noise from the TV bothered me so much. I turned it off and began to read. I gave up because by the time I finished a paragraph I had forgotten what I had read. So I just curled up in bed and went to sleep. That night I had a few vivid dreams and a few nightmares as well so I didn't sleep well.

Day 4 (Monday) I went to work. I felt miserable. My head hurt, my stomach hurt, I could barely walk from the pain at the bottom of my feet, my legs felt so heavy. They felt like my muscles could not hold me up. I didn't even take my temperature that day. I noticed that lights were super bright and bothered me. At work I could not focus, I felt down and depressed. The morning noises from my co-workers bothered me and I felt so much anger that I wanted to scream at them to shut up! I put on some foam ear plugs that I always carry with me and I felt better. I hated those nerve pains stabbing me in the head in my stomach and I had to get up from my chair now and then because my back was hurting. But then when I got up my legs felt like they were going to drop me. I also felt very cold. I had to turn on a heater that I keep under my desk and wore a light sweater. I ate my lunch late because I wasn't hungry and even then, I didn't finish it which is very unusual.

By the time I got home I had made a decision that I was going back on abx. At night I took some amoxicillin and went to bed.

Today (Tuesday) I feel a bit better. My eyes are not giving me issues. I have a headache but the depression is not as bad and the anger/rage has dissipated. I already took my Amoxicillin dose.

From what I went through, I know that I am still infected. What i can't believe is how quickly the symptoms came back. This probably means that the abx is not killing the bacteria but rather it is just making it hide.

I am going to start taking some herbs along with my abx to see if this way I can make an impact on the bacterial load. I am so disappointed that after almost a year and a half of abx I continue to be so infected.

The worse thing is that I am feeling the side effects of the abx in my gut and feel like my body is poisoned. This is why I wanted to get off the abx, they just don't feel right anymore.

Thanks tickbite666. I think that most of my Lyme is in cyst form and hiding so the abx can't touch it. I think that as soon as the abx left my system they turned into spirochetes and started to bother me again. What a pain those little buggers are.

Katebirch, I have not taken any cyst busters. I felt so good with basic abx that I never added them in. I guess I am paying the price now.

Happyjo, if you are not allergic to amoxicillin, any amount will work. I am very medicine sensitive and so when I first started treatment I started with 500mg a day of amoxicillin. This was enough to make me feel better. I am now at 2 grams a day.

I have not done IV abx. I started with Amoxicillin and Clarithromycin. Months later I switched to Doxycycline then switched clarithromycin to azithromycin. This combo didn't work for me so I went back to Amoxicillin. Later I added Rifampin and at times I supplemented with Bactrim. I also took fluconazole for two days. a few weeks ago.

As for herbs, I have only tried Japanese Knotweed on two different occasions and each time my heart had a bad reaction to it so I stopped.

I hope to begin using Cats Claw, HH, CSA and Paul d' Arco as well as to begin the herb treatment. I will add one each slooooowly as I try to wean off the abx again.

lymebarthiker, I don't mind you asking and I appreciate the help.

I am symptomatic for Lyme, Bartonella, EBV, Candida, mycoplasma. I suspect FL1953 and babesia but these are lurking in the background the way bartonella was until I started treating Lyme then it took center stage.

Been on abx for 15 months now (combinations of Amox, Doxy, Azith, Biaxin, Bactrim, Rifampin). I have been tested for Lyme via ELISA and Western Blot. Western Blot showed band 23 positive. I also tested very high for EBV. MRIs show possible FL1953 and/or bartonella in the brain vessels. Lyme lesions were also found in the brain (they called them brain freckles).

Hi Healing98,

I feel really bad for you that you are going through this. I have known other people who had a difficult time stopping antibiotics and what they did was mix herbs (or botanicals) with antibiotics to wean off the abx.

I know I keep quoting Dr. Jernigan but that's because it's his articles that I have read and make sense to me. He wrote this from the article below:

"Some people only feel good if they are taking the antibiotics. This is possibly due to the fact that some antibiotics work by impeding the growth of bacteria without actually killing them. Again we see an unacceptable solution, since this leads to years of dependency upon antibiotics. This is justified by some, due to the relief the treatment provides, even though it is but again simply a drug-induced illusion of health.

As mentioned in 'Lyme Toxins: the Primary Cause of Your Symptoms,' (Townsend Letter, April 2007), certain classes of antibiotics can activate bacteriophages, viruses. An astonishing new finding was released by John Travis in Science News (July 2003;164).

Travis reported that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin™, Cipro™, Tequin™, and Avelox™, actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria), to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins.

These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, and often lying dormant until activated by a change in the host (your body) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003).

So now we see that not only are these toxins released through the die-off of bacteria, and not only can antibiotics actually increase the production of the toxins, but these viruses can cause the bacteria to rupture spilling their toxins into the body (Waldor 2004). Other antibiotic classes need to be studied in this same manner to verify their safety."

www.townsendletter.com/April2007/antibioticlyme0407.htm

Maybe if you know what's going on inside your body it may help, I don't know...

Best to you,
Denise

Utahgal and Dejavu, thank you.

I bought Dr. Jerdigan's book and even though I found myself appreciating his point of view on most things, I find that on others he really is way out there and I tend to disagree with him. Not that I think that I am better than him or that I know better, but I am a stubborn mule and with some things or theories no one can change my mind on how I think. I do find his way of thinking refreshing and would like to one day meet him and have a long chat with him.

As for viruses that infect bacteria, that is pretty scary, isn't? That even bacteria can get infected. It is a whole different world down at the microscopic level. We have been to the moon, yet we know so little about what happens inside our own bodies.

This is also interesting regarding fluoroquinolones:

floxiehope.com/2013/06/20/what-is-fluoroquinolone-toxicity/

Denise

You can get cyst busters online. They don't work for me, bc I'm not on a high enough dose of antimicrobials yet. The cyst busters just make me worse. It's worth a try for you though.

IVs are supposed to have the highest success rate of any of the other methods.

I notice a difference after about two days.

Regardless, I've decided I'm going to take one day a week off of my antimicrobials, just so I can repopulate stomach flora and detox.

But I'm def. not going to stop anytime soon, unless herxing becomes unbearable again.

Margaret

Thanks for posting experiences. I just feel so confused when symps happen that dont fit my expectations all these experiences help me not be as upset knowing others are also having similar experiences.

Healing98 said...

From what I went through, I know that I am still infected. What i can't believe is how quickly the symptoms came back. This probably means that the abx is not killing the bacteria but rather it is just making it hide.

mmm no. that tells you you have some sort of autoimmune disease. antibiotics are making the immune response weaker. so they have mild immune suppressive effects.

what u experience is your immune system coming back with a roar and a vengeance. it is like that because of lyme. lyme does not die and it keeps it overactive in some ways and inactive in others, thus imbalanced. And in that state the immune system attacks its own body, creates inflammation, destroys delicate tissue in brain and eyes, creates malabsoption in gut by inflammation of the gut membrane, etc...

this is most certainly what will happen to me next. i just stopped antibiotics today per LLMD advice and switched to herbs.... ill tell u what happens next but i have a clue it's going to be similar to your experience...

tickbite666 said...
It usually takes more time for Lyme sx to return after stopping ABX due to its long reproductive cycle of 28 days or so. If symptoms return quickly upon stopping ABX think co's. I think I read this in either Dr B's guidelines or Dr S's Lyme Disease Solutions book.

That's supposedly the truth Healing98, however...

Biofilms rapidly come back right after you stop taking antibiotics I suspect and this slime could also be a cause of symptoms as well, especially fatigue.

I've been hearing the same thing for the last 8 years since I began treatment, that Lyme has a reproductive cycle of 28 days or so... And that what I'm feeling is coinfections.

However, after understanding biofilms and dormant persister cells, then actually treating them for the first time in my life after 6-7 years. I'm not relapsing like I did!

Lyme literate doctors like Dr. H has figured out, you must treat biofilms first, to disolve that protective coating, then afterwards target the multiple forms of borrelia, whether it be round body forms and dormant persister cells.

If you're not using a persister cell killer, quality biofilm antibiotic or herb. You're probably going to keep relapsing.

A lot of these patients that Dr. H has treated with his new regimen aren't replapsing like they used to... But still, this bacteria can still reproduce and come out of hiding anytime it wants to, whether it's 6 months down the road, year down the road, even 2 years down the road. Regardless of anyone saying they reached remission or say they're cured, I suspect it only takes 1 dormant borrelia bacteria cell.

I also think you feel crappy because you're coming of a drug in general, that your body may be used to, kind of like a heroin attic, so you have to consider that! Once your body depends on a drug for long time, it may count on it to make you feel good. Just a thought...

Then there's the fact you've damaged a lot of the good bacteria in your gut, which some scientists say make a huge percentage of your immune system. What always helped me feel better after coming off antibiotics is pound the yogurt and strong probiotic pill.

Post Edited (Charlie55) : 5/14/2018 9:17:02 PM (GMT-6)

mpost said...

Healing98 said...

From what I went through, I know that I am still infected. What i can't believe is how quickly the symptoms came back. This probably means that the abx is not killing the bacteria but rather it is just making it hide.

mmm no. that tells you you have some sort of autoimmune disease. antibiotics are making the immune response weaker. so they have mild immune suppressive effects.

what u experience is your immune system coming back with a roar and a vengeance. it is like that because of lyme. lyme does not die and it keeps it overactive in some ways and inactive in others, thus imbalanced. And in that state the immune system attacks its own body, creates inflammation, destroys delicate tissue in brain and eyes, creates malabsoption in gut by inflammation of the gut membrane, etc...

this is most certainly what will happen to me next. i just stopped antibiotics today per LLMD advice and switched to herbs.... ill tell u what happens next but i have a clue it's going to be similar to your experience...

I don't think this is well substantiated. I've been through what the OP is describing and it is ONLY with antibacterials. Not antiinflammatories or any of that. Autoimmunity is certainly a part of this infection at any stage but the simplest explanation here is infection relapse.

op if you can get on the herbs that'd be great. I still experience the same thing, but I feel pretty good on them. So I don't feel as bad if I have to take them forever. Everyone's different

I do agree that abx can suppress the immune system - Dr J does pulsing and drug holidays to allow your immune system to kick in.

I was talking about the autoimmune part of it - going into overdrive and wreaking havoc. Maybe I misread or didn’t understand - too tired to read thru the posts..

I also have lower wbc count when on abx and it rebounds within a few weeks after cessation .