new to protocol, questions

[ellie6]

I am just starting the protocol and have question. Does doxy work as well as mino. I seem to tolerate doxy better. Historically I have reacted with an increase in my joint pain within days of starting either of these meds while being treated for Lyme. I’m hoping this protocol will prevent that from happening. I am also attempting LDN again as well. In the past I have also reacted with an increase in joint pain with this as well so I am thinking of pulsing this too. I have had a rough time tolerating probiotics in the past but I’m assuming with the dozy I need them. They too have caused me an increase in pain so I’m not sure how to proceed.

[m.]

Doxy put me in remission. My thinking was to start with doxy, and if & when doxy didn’t work, to switch to minocycline.

I caught my arthritis early, and skipped IVs, but kept an open mind about perhaps needing them someday. Not yet!

[lynnie_sydney]

Hi Ellie – not sure what you mean by ‘starting the protocol’. There is no single protocol. And, from your post, it would seem like you have been on various antibiotics before. It would really help others to provide you helpful responses if you were able to put a brief history into a signature which will come up each time you post – such as diagnosis, date of symptoms, past treatment, what you are doing now etc. (To do this, click on User Control Panel above left, go to Profile, then type info into Signature box)

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[ellie6]

Sorry, didn’t mean to be so confusing. I thought there was pretty typical “protocol” that was used . I have updated my signature with some info.

[PhilC]

Hi Ellie,
@ellie6 wrote:

Does doxy work as well as mino. I seem to tolerate doxy better.

Generally speaking, no. But that is irrelevant since you can always switch to mino later when you feel up to it.

@ellie6 wrote:

I am also attempting LDN again as well. In the past I have also reacted with an increase in joint pain with this as well so I am thinking of pulsing this too.

What dose of LDN were you taking?

@ellie6 wrote:

I have had a rough time tolerating probiotics in the past but I’m assuming with the dozy I need them. They too have caused me an increase in pain so I’m not sure how to proceed.

Exactly what kind of probiotics were you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[ellie6]

Hi Phil,
When I have taken mino in the past it seemed to bother my stomach. The interesting thing with doxy is in the past whenever I would take it within 24-48 hrs all my pain would vanish, but a few days later it would be back worse than before making it too difficult to continue. Of course the dosage was much higher.
I am only on 1.5mg of LDN. Usually within a few days my pain increases on tis as well.
I have tried many different probiotics. The one I’m currently using is custom’probiotics http://www.customprobiotics.com/custom-probiotics-adult-formula-cp-1.htm. Unfortunately I just suffered a horrible herx after starting it and needed to back off for now.

[PhilC]

Hi Ellie,
@ellie6 wrote:

I am only on 1.5mg of LDN. Usually within a few days my pain increases on tis as well.

LDN makes some people worse, much worse in some cases. It’s not really clear why, but one possibility is that these people were on too high of a dose. So you may need to decrease your dose. At present, the lowest dose that has been tested and found to have an effect is 0.5 mg. If you were to try that low of a dose and still have problems, then LDN may not be for you (at least for now).

@ellie6 wrote:

I have tried many different probiotics. The one I’m currently using is custom’probiotics http://www.customprobiotics.com/custom-probiotics-adult-formula-cp-1.htm. Unfortunately I just suffered a horrible herx after starting it and needed to back off for now.

I have also reacted to several different probiotics, presumably due to the presence of milk peptides or proteins (sometimes hidden).

These are some probiotics that I’ve had success with:

Enzymatic Therapy Acidophilus Pearls *
Natrol Probiotic Acidophilus BioBeads
Gr8-Dophilus from Now Foods *
Saccharomyces Boulardii + MOS (Jarrow Formulas brand) *

The probiotics above that are marked with an asterisk are the ones I am currently taking. Initially, I took Saccharomyces Boulardii + MOS every day for one month, but now I only take it once or twice a week. Since Saccharomyces boulardii is a species of “friendly” yeast, it should be resistant to most antibiotics. That’s why I don’t take it every day.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

@ellie6 wrote:

Hi Phil,
When I have taken mino in the past it seemed to bother my stomach. The interesting thing with doxy is in the past whenever I would take it within 24-48 hrs all my pain would vanish, but a few days later it would be back worse than before making it too difficult to continue. Of course the dosage was much higher.
I am only on 1.5mg of LDN. Usually within a few days my pain increases on tis as well.
I have tried many different probiotics. The one I’m currently using is custom’probiotics http://www.customprobiotics.com/custom-probiotics-adult-formula-cp-1.htm. Unfortunately I just suffered a horrible herx after starting it and needed to back off for now.

Hi Ellie,

Just a couple thoughts that popped to mind.

The description of your symptoms after starting doxy and having a period of quiescence, followed by worse pain sounds pretty classic for Lyme herxing. I’ve experienced this every time I’ve changed protocols to something that hit my Lyme. There’s a little honeymoon period and then herxing usually sets in within a few days. It’s a challenge with rheumatic disease, because as Brown described, rheumatics suffer from hypersensitivity to bacterial endotoxins…we’re literally allergic to the toxins released by the bugs as they die. While mycoplasma is a slow-growing, slow-replicating bug that doesn’t require daily dosing, Lyme, on the other hand, is believed by LLMDs to need higher, daily dosing to prevent resistance (pushing it into biofilms and pleomorphic forms) and to zap it. I found it incredibly hard going through Lyme protocols, too, and learning how to detox helped a lot.

I’ve read that with LDN (which I’ve also tried) that folks who have an issue with gut-overgrowth of candida usually need to clean up the candida, first, because they can’t tolerate LDN until they do. If you have leaky gut probs, which most folks with AS and PsA do, then candida may be a problem that needs to be addressed first. As you’ve been on numerous protocols and haven’t mentioned any rx’d anti-fungals in your protocols, I wonder if it’s possible that with your sensitivity to certain probiotics that this has turned into a vicious cycle?

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=303

My guess is that cleaning up and healing your gut, first, is needed and a good doc who can help with this would be ideal.

[Author]

Posts