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Floxed and Lyme - please help

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Posted 8/19/2019 1:54 PM (GMT -5)
Hi everyone, I rarely post on here (usually when I’m in complete panic mode lol) but I frequently read others posts!

I am at rock bottom for treatment and in a dark place mentally. I was diagnosed with Lyme 3 years ago and bartonella about two years ago. I was doing well with treatment but then my LLMD thought I would benefit from Cipro. I did not know the risks. I know unfortunately this is the story for many people trying to treat their Lyme so I’m hoping some fellow Floxie’s might be able to help. Within five pills, I couldn’t walk and had severe muscle weakness, lost 10 lbs in two weeks, and severe tendon pain in my Achilles. I was in a wheelchair for months but did recover. However, I stopped Lyme treatment for almost a year while focusing on healing from the cipro toxicity and my Lyme has gone out of control.

I recently begun herbal treatment and I seemed to have had a reaction to Samento with my tendons about A month ago. My elbow swelled and locked up, then my wrist, my other elbow, and now my knees. I stopped the Samento.The pain jumps around and this is NOT the same pain I had with Cipro but I’m scared because it’s tendon pain. One day my knee feels like it could explode and then my elbow hurts the next day (which feels more like Lyme/bart). There is a lot of arguments on Samento being related to Fluoroquinolones but even Buhner himself said they are different and not related. I read through forums on here about it and can’t get straight answers. It’s very frustrating and confusing. I can’t tell if this is Lyme/bartonella or my Cipro injury reappearing. I’m terrified to keep treating Lyme but also scared of what will happen if I don’t. It’s also important to note I previously took cats claw for months and was fine. Also, every time I herx now (from anything...even Myers cocktails and glutathione) it feels like I’m getting floxed again but then passes.

Also have any other Floxie’s been able to tolerate antibiotics or herbs post flox?
Posted 8/19/2019 2:20 PM (GMT -5)
emilywar,

I am so sorry about what happened to you. I can imagine how frightening it must be to feel like floxing is happening over again when herxing. I have not been floxed. I had a reaction to Ciloxan (a Cipro eye drop) decades ago and had a positive allergy patch test to quinoline.

I have mainly treated with Buhner’s herbal protocols. I take regular cats claw at super tiny doses - like less than 1/16 tsp of powder.

First, you don’t have to take cats claw or samento. There are other immune boosting herbs. The tendon pain and moving pain sounds like bartonella to me.

I would recommend taking Japanese knotweed. It can also cause increased joint symptoms, at least it did for me. Start low and slow with anything. Also take the immune modulators like Chinese skullcap and red sage (danshen). Skullcap has been very helpful for me. I don’t respond well to red sage and only take a few drops of it.

Houttuynia is awesome for bartonella and slowly reduced a lot of my joint stiffness and tendon soreness. Sida acuta after that.

I would start them in the order I listed. Take each one by itself for at least a few days to gauge how it affects you before adding the next. Don’t be surprised if symptoms worsen at first. If they do, drop down the dose to where it’s tolerable and slowly work up from there.

You can do this!!!🤗
Posted 8/19/2019 2:25 PM (GMT -5)
Thank you for the advice!! I was in Houttinyoua And doing well on it But I think I’m still so traumatized from the Cipro that I’m scared of every little thing.
Posted 8/19/2019 5:36 PM (GMT -5)
Emily - I’m so sorry about the floxing! That must have been a terrifying experience.


I have a bad Bartonella infection but have refused taking Cipro or levaquin - due to the floxing risk.

If I were you - I wouldn’t take the Samento - if it causes you fear.
There are other treatments - (that’s what I keep telling myself too when I wonder about the Levaquin and Cipro for bart)

As WBF stated - there are several herbal options - JK, Houttuynia , Sida Acuta are good for bart.
Posted 8/19/2019 10:05 PM (GMT -5)
have you tried the pk protocol or iv vit c 25 gram was soothing after a while?
Posted 8/20/2019 12:49 PM (GMT -5)
Emily I wish I had advice for symptoms but I have no experience in this department. I had to look up what floxed was. I'm so sorry you are dealing with this. Thoughts and prayers are with you.
Posted 8/22/2019 9:02 AM (GMT -5)
Thank you everyone! I really appreciate the responses.

I have tried high dose vitamin c. I just saw a new LLMD so I’m hoping these new herbs they gave me I can tolerate.
Posted 8/22/2019 10:22 AM (GMT -5)
Dr SP (whom I really trust when it comes to bart and these things), has a theory that many people who are floxxed have inadvertently stirred the pathogen hornet nest in a most major way. It could be that the bart is residing in all these tendons/tissues, so anytime you hit it with a super effective med with strong tendon tissue penetration (like a quinolone) it will drive a rather strong response.

What dosing schemes are you using? you might want to see if you can lower dose and if see if that helps.

Are you doing lots of detoxing? if you are able to, I'd try to incorporate a lot of detox, you might be getting a flare everytime you mobilize the toxins and aggravate the infections. So hopefully if you can keep toxin load managed it might put a cap on flare severity (if that is what is in fact happening).

Post Edited (sebreg) : 8/23/2019 9:43:08 AM (GMT-6)

Posted 8/22/2019 10:47 PM (GMT -5)
Interesting theory. Thanks for sharing that, sebreg.
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