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On my final few days of ABX after almost 18 months - here are my thoughts

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Lyme Disease
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Posted 10/21/2018 10:53 PM (GMT 0)
Thanks. The cost of the antibiotics doesn't matter for me as I get them for free. Public healthcare here covers them.
Posted 10/22/2018 1:16 AM (GMT 0)

Girlie said...

k07 said...
I may also consider the new high dose dapsone protocol for 7-8 wks. I failed to have improvement on other abx. Look forward to dr h publishing results in 2019 - hopefully early in the new year! Maybe wait for that, Sean.

How high? Are you talking about the 200 mg protocol?
Is that daily for 7-8 weeks?

Hopefully he starts you off with very low dose.

Not sure yet. Hopefully there’s a ramp up period to see how I react to it. I’m scheduled to go in March. I’m just getting tired of this and I like the idea of 8 weeks and then off all abx.
Posted 10/23/2018 1:01 AM (GMT 0)
I too was on a regimen of antibiotics for about 15 months. I had no herxing and no other real improvements. My symptoms were not severe compared to my wife for sure, but enough weird stuff going on that I thought treatment was beneficial. My wife got extensive treatment in Germany including hyperthermia which I did as well, but not as extensive. I too decided that since treatment was not helping there was no need to continue. So, now I wait. I have other ailments going on as well (psoriasis and anxiety) and am in recovery from alcoholism for five years. I have even stopped taking supplements just because I really don't know what they are doing.
Posted 10/23/2018 9:36 PM (GMT 0)
Hey SeanIRL

Thanks for your post. I know it's a few days ago now but i wanted to add some thoughts and questions.

So i've been on antibiotics for about 8 months. I've felt very similarly to you. Initially i wasn't fully convinced i had lyme, i had 1 band on the igenix western blot and 2 on the immunoblot. Then i got a positive result on the newer ispot(not sure if they have a lot of false positives).

I wanted to try antibiotics because i wanted to see a reaction, positive or negative. Generally i haven't seen anything that can be considered a true herx. Some times i feel worse, or get a new symptom. Occasionally i traced it to not detoxing enough or starting a new medication. But stopping the medication often wouldn't resolve it or adding detoxing wouldn't make a difference andd then symptoms would suddently shift again without any medicinal changes.

Generally i handle ABX pretty well, some stomach issues from it and some yeast issues, but no real terrible pain. My concern is that i am doing damage to my body without actually treating anything. You sound like you took things more seriously, or at least understood some of the medicine better than i do, but i'm getting close to giving up antibiotics as well.

So questions for you if you don't mind.

1. When you got bit by the dog, did anything else happen. Fever, some other disease or anxiety?
2. If you stop antibiotics, what will you try next? Or will you stop everything and just try to live life as best you can?
3. Do you feel anything makes your symptoms better or worse?
Posted 10/23/2018 10:51 PM (GMT 0)

Garion said...
Hey SeanIRL

Thanks for your post. I know it's a few days ago now but i wanted to add some thoughts and questions.

So i've been on antibiotics for about 8 months. I've felt very similarly to you. Initially i wasn't fully convinced i had lyme, i had 1 band on the igenix western blot and 2 on the immunoblot. Then i got a positive result on the newer ispot(not sure if they have a lot of false positives).

I wanted to try antibiotics because i wanted to see a reaction, positive or negative. Generally i haven't seen anything that can be considered a true herx. Some times i feel worse, or get a new symptom. Occasionally i traced it to not detoxing enough or starting a new medication. But stopping the medication often wouldn't resolve it or adding detoxing wouldn't make a difference andd then symptoms would suddently shift again without any medicinal changes.

Generally i handle ABX pretty well, some stomach issues from it and some yeast issues, but no real terrible pain. My concern is that i am doing damage to my body without actually treating anything. You sound like you took things more seriously, or at least understood some of the medicine better than i do, but i'm getting close to giving up antibiotics as well.

So questions for you if you don't mind.

1. When you got bit by the dog, did anything else happen. Fever, some other disease or anxiety?
2. If you stop antibiotics, what will you try next? Or will you stop everything and just try to live life as best you can?
3. Do you feel anything makes your symptoms better or worse?

The night of the bite, I laid in bed and my legs started twitching hard. I never had any twitching before that. I was worried it might be tetanus because it can cause twitching, but my tetanus shots were up to date and I got another booster the next day to be sure. I also feel like my depersonalization got much worse but that's hard to say because it's such a vague symptom and I difficulty remembering when it truly started. But it's certainly the worst it has ever been.

As for what to do next - I don't know. I just don't know. Wait for better answers from research.
Posted 10/24/2018 12:14 AM (GMT 0)
Sean - I haven't read all of your thread (my apologies) but I would strongly suggest you look into mold as a possibility seeing the abx have done virtually nothing. Great Plains Lab has a urine mold test which is relatively affordable (at least compared to the old Real Time Labs test) and it'll tell you if you have mycotoxins in you and what kind. Mold and Lyme/Co-infections manifest themselves with very similar symptoms.
Posted 10/24/2018 1:14 PM (GMT 0)
Sean - Yea i concur with Mister Mike. I actually took the Great Plains Lab for Mold. Came back with one strain. I did treatment for that, but haven't seen any improvement. Still definitely worth looking into.

A doctor who i trust gave me the analogy of a camel. There can be lots of things weighing us down like packing things on a Camels back. Borrelia, Mold, Stress, bad detoxing genetics... It all adds up, and then eventually the Camels knees buckle. Could be that the dog that bit you just took you over that edge, and everything came rushing down on you all at once.

I know for me my twitching started after a really stressful time in my life, the day the project ended i woke up and noticed i had a lot of twitching in my legs. Since that day it has not stopped and slowly moved all over my body.

I also feel like i'm in the same boat with what to do next. I'll stay on antibiotics for another month or two, maybe complete a year of treatment. I'm also considering making an appointment with Dr J. But beyond that i feel i've exhausted most options.
Posted 10/24/2018 4:20 PM (GMT 0)
Have you considered that maybe you got bartonella from the dog bite? Bartonella really can keep you from improving if whatever you are doing isn't treating it.
Posted 10/24/2018 7:13 PM (GMT 0)
Pretty sure Rifampin and Doxy cover Bartonella. And according to his signature he was on it since 2017
Posted 10/24/2018 7:36 PM (GMT 0)
I'm wondering if only certain strains of bartonella respond to rifampin.
Posted 10/24/2018 8:36 PM (GMT 0)
Sean - After i was bit by dog i noticed my skin started looking yellowish. I just looked not well. Then I had some female issues which I’m sure came out due to weakened immune system. For the 3 years prior to bite I had on and off mysterious problems - tinnitus, rosacea, itching, palps, knee/hip pain, unable to bend over without vision going weird, allergies, etc. So I agree with Garion, the dog bite probably pushed you over the edge like me.

Brucella (very similar to bart) can also come from bites. I was actually IGM + but the confirmation test (agglutination) was -. Something to think about...brucella is treated for at least 3-6 months with 3 abx preferred. Usually doxy, rif, bactrim. I don’t think you’ve tried bactrim?

Post Edited (k07) : 10/24/2018 2:39:16 PM (GMT-6)

Posted 10/24/2018 9:18 PM (GMT 0)

Garion said...
Pretty sure Rifampin and Doxy cover Bartonella. And according to his signature he was on it since 2017

not all the time. Sometimes Rifabutin is needed..

BUT, I would suspect that he'd have at least a reaction to it...(the rifampin/doxy)
Posted 10/24/2018 9:20 PM (GMT 0)

Notime4lyme said...
I'm wondering if only certain strains of bartonella respond to rifampin.

I've not heard that...but sometimes Rifampin doesn't quite do the job...and Rifabutin may work.
Dr. J just prescribes Rifabutin right away.

But, as I posted above - I would think there'd be some reaction...


I'm wondering more about the Babesia getting in the way...as I've known people not to react to Malarone...in fact when I tried it - I don't think I felt anything...but mepron? Holy moly.
Posted 10/24/2018 10:15 PM (GMT 0)
Hi Sean,

Your conclusion "antibiotic treatment is non-functional for treating lyme" is correct.

Spirochetes hide from antibiotics. They have biofilms and go intracellular. The only thing abx will do is kill spirochetes floating in the blood. Abx will never eradicate this disease.

Read up on the Horowitz protocol. He's using dapsone which goes intracellular, plus abx.
Posted 1/20/2020 4:04 PM (GMT 0)

SeanIRL said...
I tested positive for lyme with arminlabs last year and was seeing a good IDS since for treatment. I've been on ABX for almost a year and a half and my treatment was very thorough. Despite that, I haven't seen any real results unfortunately, except maybe a reduction in some twitching. Here are my thoughts on treatment.
For those curious - I've been on the following in various combinations at high doses. Usually 3 - 4 abx at any one time.
Lymecycline, azithromycin, rifampin, doxycycline, cefuroxime, malarone, amoxicillin and flagyl.
I seemed to tolerate all antibiotics well. Azithromycin would make me queasy if I took it on an empty stomach and flagyl made me feel more tired. But other than that, I tolerated all pretty well without any side effects.
I've also used the following natural treatments on top of antibiotics - Carvacrol (97%), sarsaparilla, cat's claw, d-limonene, rhodiola rosea, oil of oregano, artemisinin, whole leaf stevia extract, nattokinase, serrapeptase and a few other natural treatments that I can't think of right now.
At no point over the past year and a half, despite being on pretty high doses of multiple antibiotics did I experience any herx reaction. I also didn't experience in change of any major symptoms.
My conclusion is that either my arminlabs test is a false positive, or antibiotic treatment is non-functional for treating lyme. I have about a week of antibiotics left and after that I'm ceasing treatment. I see no purpose in continuing what clearly isn't doing anything.
I wish you all the best in your treatment, but for me - antibiotics isn't doing anything for me and clearly won't do anything.
I hope this post doesn't dishearten anyone, but it's important to give an honest evaluation of treatment.
Take care.

Hey Sean IRL

Can you tell me where you purchased the carvacrol 97%? What dose do you take daily? Is it hard on the stomach like oregano essential oil? Did it make you herx the first times?

Thanx for answering!
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