Anyone with SLE in remission?

[deedi95]

Hi, I am new to the community and have recently started the AP protocol with doxycycline 100mg MWF. I was diagnosed with SLE 3 years ago and even though my symptoms are manageable, I feel like I did not see a subtle improvement yet. I have been reading about peoples positive experiences here mostly with RA/SD but only a very little of them contain SLE. I feel like I need some encouragement from people with SLE that are in remission with AP therapy. If anyone here can write their positive experience, it is very much appreciated!

[Maz]

Hi there,

There is a a forum member, “Karen tysland,” who has recovered from both lupus and RA. You can find her story here:

Karen’s Story

She posted recently, so if she doesn’t see this question from you, you could try sending her a private message (PM).

When did you start your doxy? If it’s recently, you may just be in the early stages of feeling worse before better. If it’s been a while, have you considered asking your doc about changing your dose, your generic, adding a second abx, or trying Minocycline?

[Lynne G.SD]

Hi Deedie
My sister recovered nicely from Lupus,she used mino and Zith in very small doses between 25 and 50mg along with olmesartan.This was a modified Marshal protocol made by her doctor in Vancouver..She died of brain cancer recently so I can’t give you any more info

[SS]

Hi Deedie:
I have mixed connective tissue(mctd) more towards Lupus.
I am in remission for the last 15 years.
I started with Minocin 100mg alternate days and have reduced the dosage now.
Please go to my story “sankamithra mixed connective tissue/lupus”
and see my remission information.
Thanks
Regards
ss

[deedi95]

Thank you Maz, Lynne and SS for responding. I appreciate every one of your responses, they gave me courage to keep up with this protocol. I have been using doxy 100 mg/day MFV for nearly 3 months. Unfortunately in my country its impossible to find mino, so I am left with doxy for now. My doctor who happens to know a lot about this protocol told me LDN might help too so now I am looking for ways to get it. I am aware this is early to give up, I will keep going.

[Maz]

Hi deeds,

Well, the upside is that it’s still very early days – AP is a long term therapy and anyone with an inflammatory component with their rheumatic disease can expect to feel worse before they feel better. You might find the info in the After Starting AP FAQ section of the site to be helpful:

After Starting AP

Between 6-8 months after starting AP is when most folks will go back to the drawing board if labs and/or symptoms aren’t improving. Sometimes labs improve before symptoms and vice-versa. It can feel a bit like taking a couple steps forward and one back all the way to remission.

There are tweaks that can made to the protocol if no improvements are being experienced. Is your doc from the AP doc list? He/she sounds knowledgeable. LDN can be prepared by any pharmacist who can compound medications. If they need guidance, I think Skip, at Skip’s pharmacy has been helpful to those asking questions.

In addition to adding LDN, as your doc suggested, there are numerous ways to help with getting rid of toxins that increase free-radicals and inflammation. Diet, anti-oxidative supplements, FIR saunas, hydration, etc. You will find lots of info by using the search box above and you’re welcome to post as often as you like to ask these kinds of questions.

Hope you turn a corner soon!

[Author]

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