Lupus & AP doc list assistance

[MelissaMC123]

Hello, I have just finished reading The New Arthritis Breakthrough by Henry Scammell and while this book seemed to focus mostly on RA, I’m hoping I’m on to something. I have Lupus, diagnosed for 3 years, but have had symptoms for a decade. The only time I’ve seen any form of remission was when I was pumped full of antibiotics while in the hospital for pneumonia. I was rash, pain, hairloss free for four months, then all symptoms crept back in. I am currently covered in rashes from the sun, and brown blotchiness from my daily plaquenil, in pain, fatigued and so stiff. My rheumy would like me to now switch to Imuran, and I would like to find a better solution. I’m wondering about AP specifically for Lupus. Is it as effective as say it is for RA and scleroderma? When I mentioned AP to my dermatologist, he said he had heard of the effectiveness of antibiotics, but warned me of an extra sensitivity to the sun. I am already extremely sensitive to sunlight.

Also, if someone could help me figure out to access the doctor list, it would be much appreciated. I attempted to view the list for NY, and was unable to get it to work. Now every attempt is not accepted because it states I’ve used my one chance. Thanks! Melissa

[Maz]

Hi Melissa,

Glad you found us here, but sorry you had to seek us out.

The automated doc search system won’t allow you to actually view the doctor lists, just click to select the various state list options and then submit each list separately on the subsequent forms that automatically pop up after each form is submitted. The lists are then emailed to the email address that you add. Unfortunately, as you got as far as opening the first list, this will have permanently blocked your IP address if you then exited the system. So, I’ll send you the NY state AP doc list in a Private Message (PM) and, if you would like further listings, let me know and I’m happy to help.

Did you catch last month’s blog? Think you will find it interesting:

Lupus (and Targeting the Infectious Cause) – a Transcribed Lecture Given By Thomas McPherson Brown M.D.

We are all just fellow patients here, unable to provide medical insight or advice, and just personal experience of the treatment and share things we have learned. So, generally speaking, lupus patients tend to be extremely hypersensitive. This typically means the optimal approach is to start very low and slow on AP to avoid excessive herxing. For example, a lupus patient may start on 50mg minocycline or doxycycline in the first week (e.g. Monday), then if okay, will try adding in a second dose the next week (e.g Friday). Then, if okay by third week, adding in a third dose (e.g., on Wednesday) and sticking there for a few months. Herxing is very common among lupus patients, so learning how to detox can be a very big plus. The goal when starting a low dose, pulsed AP is to introduce it by titrating the dose to patient tolerance (as described in the book) in order to avoid excessive herxing and extreme hypersensitivity reactions. It’s also best not to compare what a lupus patient can tolerate with what a scleroderma patient can tolerate, because sensitivity issues and ability to tolerate different doses will vary quite a bit between rheumatic diseases. The aim is to find what the individual can tolerate and to view the treatment as a slllooow therapy, with no overnight miracles. Patience is key. A good friend of mine with lupus and retired volunteer for RBF had a sensitive stomach and although she did very well on minocycline for many years and was able to taper slowly and entirely from long-term prednisone, when she later got a tick bite and developed Lyme disease, she switched to doxycycline and found she could tolerate doxycycline monohydrate better than doxycycline hyclate.

The good thing about AP is that it can be used alongside plaquenil and it makes a good combination. Yes, sun-sensitivity can occur with tetracyclines, but the upside is that summer is almost over, so fall is probably the ideal time to think about starting. Overall, if on other meds, like plaquenil, Imuran, and/or prednisone, it’s better not to stop anything cold turkey, but just to gradually add in mino or doxy, stick with a tolerable dose (herxing is a sign the antibiotic is reaching its microbial target, so not a bad thing – but the goal is to disable the bugs, not the patient).

You’ll find us all here if you have any AP questions or looking for encouragement and support. Now, I’ll go send you your NY doc list. You should get an automated PM notification you can click on to find your PM, or, if logged in to the forum, you will also see a blue flag over where it says, “Hello MelissaMC123.” So, you can also retrieve your PMs by hovering your cursor over that and selecting, Messages, and then Inbox.

[Lynne G.SD]

Hi Melissa;
I hate to possibly add to your woes but is there a chance you might have lyme in the mix.My sister who has Lupus and MCTD and I who have SD both found out that we also have Lyme.This only happened after many years of having SLE and SD.
I say this because it is rampant in your state and I expect that most people there have been exposed to it.It would be worth checking out as the antibiotic protocols are quite different.If you have Lyme you will never be able to control the SLE

[MelissaMC123]

Thank you both so much for your quick replies 🙂 I really do appreciate it more than you know. I’ve dealt with this for years, and really feel like I need to take control. I’m grateful to have somewhere to go with my questions! I have an appointment with my gp on Tuesday. He actually mentioned LDN at my last appointment, and I’ve been doing reading about that as well. He has also tried treating me with random antibiotics, hoping to hit on something that would repeat the success I had with antibiotics when I was ill years ago. Lynne, he has mentioned Lyme and has tested me more than once….and suggested I get more sensitive testing. Although at the time, I was really just focused on treating my Lupus. Really, he’s a great dr….much more beneficial than my rheumatologist, who is constantly pushing me towards either switching to stronger drugs, or adding in a daily steroid.

So I will go read last month’s blog, and read, read, read. I will return with more questions again, I’m sure. Thanks again…

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