Doing AP yourself

[paper tiger]

I have ordered a copy of Brown/Scammell's book, but amazon always takes awhile for me. I'm sitting pretty in Japan right now, but I woke up with a brand new extravasate on my pinky's nailfold, and I realised that I really don't want to learn just how quickly and viciously SD progresses.

I have an appointment with an AP doc on August 20, but that's a long time to sit and wait… So, the second I get back, I'm going into a travel clinic, telling a little fib about impending travel through Vietnam, Cambodia and Thailand, and requesting a doxycycline prescription for about 2.5 months.

So, my questions are as follow:

1 – Am I totally stupid for essentially self-prescribing myself doxy? I like to think I am taking my potential remission into my own hands, but am I instead just playing with fire?

2 – I'll likely get a prescription for generic doxy 100mg. I've heard about drug hypersensitivity. Can the pills be cut in half to be taken it twice daily MWF? If not, is 100mg twice daily MWF too dangerous? And does anything make doxy more 'penetrative', mino-style?

3 – I've read up a lot on diet changes on this message board, but it mostly pertained to people with RA. What significant dietary changes should I be making?

4 – What side effects should I expect? I haven't taken prescription meds in at least 7 years, and before that, maybe 10 years. Does an absence of antibiotic use in the past suggest an elevated risk of drug intolerance by any chance?

Anything else you guys could help me out with would be much appreciated!!

And with that, it's time for my morning miso and onigiri. ???????????

[mikana]

Hi there, Paper Tiger…my husband was diagnosed with SD 12/08 and found out about AP and Road Back thru Myspace (yeah, they have literally saved his sanity) and read all 3 books and read most of the info on this site and spent time finding an AP doc. We asked his GP to prescribe Minocin for him 100mg 2x a day and he said he had no problem with that because we had a long talk with him and told him that we felt this was our only hope for a long healthy life together. We also gave him a copy of “Scleroderma and The Proven Therapy That Can Save Your Life.” He had no experience with AP but we told him we had an appointment with Dr. K in Lufkin, TX and he said he would be happy to work with her in our treatment of the disease.

To make a long story short, Mike started on Minocin and continued taking it until the time we were able to make the trip to Lufkin. We tried to follow what we had read and knew that it was at least better for him than the traditional meds the original rheumy had prescribed. We now have a GP, AP and Rheumy that are all working together and as all here can tell you, the sooner you start the better.

Best of luck my friend and stay strong and positive. You WILL get better with AP.

[Kim]

Paper Tiger and Mikana,

My story is just like Mikana's.  When I was first diagnosed with SD and found out what my rheumy's plans were for treating me I thought surely there had to be something else.  Once I found this site I approached him about abx and he refused.  He even went so far to say that at this time there really wasn't anything to treat SD, only help with the pain as it progressed. :angry:  He's now my ex-rheumy.  I then took the protocol to my PCP and asked for his help.  Once he read the protocol he had no problem prescribing the Minocin and doing the follow-up tests.  I'll be forever grateful to him for helping me start AP a.s.a.p., because I truly think that starting sooner is key. 

Knowing what I know now, by all means I would start treating SD immediately, even if it means your medical team is not in place yet.

Mikana, how is your husband doing now?  Better, I hope.

Take care…..kim

[paper tiger]

Thank you for your replies! It's good to know that I won't be the first to take this into my own hands! But what do you think of starting AP without a doctor even knowing you're doing it for the sake of treating SD? Is it foolish to take doxy when no one will be doing follow up tests (until I meet with the new AP doc in August)?

Also, have you (or in mikana's case, your husband) ever taken doxy? What's your opinion of dosing? Can I start 100mg doxy twice daily MWF or is that too strong?

[paper tiger]

[user=1359]paper tiger[/user] wrote:

Thank you for your replies! It's good to know that I won't be the first to take this into my own hands! But what do you think of starting AP without a doctor even knowing you're doing it for the sake of treating SD? Is it foolish to take doxy when no one will be doing follow up tests (until I meet with the new AP doc in August)?

Also, have you (or in mikana's case, your husband) ever taken doxy? What's your opinion of dosing? Can I start 100mg doxy twice daily MWF or is that too strong?

Actually, when I think about it, do people ever just take a dose once daily? If I took 100mg once daily, MWF, would it be as effective as 50g twice daily, MWF?

[Parisa]

Papertiger,

There have been self-treaters here over the years.  In your spare time, you can read all of the old posts on Roadback if you can't find any recent ones. 

Selftreatment isn't ideal.  You really need to do your research but it sounds like you are doing that.  The best approach is as people have mentioned here to try and get a primary care doctor to at least monitor your bloodwork.  Of course as I'm saying this, I realize that my son has been on antibiotics (doxy) for acne for about 4 months and his pediatrician hasn't mentioned bloodwork. 

If I thought I had scleroderma, I wouldn't be able to wait months for an AP appointment.  I would want to start on the treatment yesterday.

[Kim]

[user=1359]paper tiger[/user] wrote:

Also, have you (or in mikana's case, your husband) ever taken doxy? What's your opinion of dosing? Can I start 100mg doxy twice daily MWF or is that too strong?

This is where things get sticky on this board.  None of us are doctors and we can't “prescribe” for you.

Your best bet would be to read the protocols and know the range of doses.  Some can take the highest dose from the start, but most do better starting on smaller doses and working up.  I've always done better pulsing, but others swear by daily dosing.  As you can see, it's clear as mud.  It complicates things further when/if you plateau and need to add in a second antibiotic.  SD can spread like wildfire in the early days and you are smart to get on Minocin a.s.a.p., but at some point you may have to travel to a specialist using abx for SD.

Take care and let us know how you're doing…….kim

p.s. You can add your diagnosis to your signature line so other SDers can help.  Go to “my account” and you can edit your profile.

[paper tiger]

Thanks Kim! I'll definitely change my sig when I get back on a computer with an english keyboard.

I think I'll start doxy 100mg twice a day MWF if I get prescribed capsules, and 50mg twice a day if they're pills that I can cut in half and see how it goes (standard malaria treatment is 100mg so I reckon the doc would get a bit suspicious if I began asking for specific types of pills and dosages, heh). In your experience, though, will I need to start probiotics straightaway, or can I put it off two months until I meet with the AP doctor who can fully explain everything? Not too keen on yeast overgrowth. I've cut out sweets in the past few weeks (and I have a pretty big sweettooth), but my diet is at least 40% fruit, and I'm not so sure I can scale back.

[Kim]

Hey Paper Tiger,

You're taking a big chance starting abx without probiotics……at the very least, you can eat some unsweetened yogurt.  Candida is such a bugger to treat once it takes hold.  I'm still fighting it and wish I had your conviction to eliminate the remaining sugar in my diet.  I've never eaten a lot of sugar and have cut way back, but really need to eliminate it entirely right now. :X

You're obviously smart, informed, and ready to kick SD to the curb so you should have excellent results. 😉

Have a great trip…….kim

[Parisa]

Definitely don't do the doxy without the probiotics.  Alot of our health is in our gut and the probiotics help to maintain that health.

[mikana]

We (Mike) started probiotics almost as soon as he started Minocin. We had read how important that is. Also he is on a major dosage of Clindy until 6/08 when we go back to see our AP doc. We will see where she takes us from there. Yesterday he had all of his bloodwork done and we are a bit anxious to see the results. They were done by our fantastic rheumy who works with our AP doc and then he will fax the results to her so she will have them when we go next week.

We have been fortunate to find a GP, Rheumy, and also a dentist who are very supportive of working with our AP doc. And she will work with any doctors we choose as she is 300 miles away. It took a bit of going thru doctors (?) to find the right ones but I think we have found a great team. We only need one more….a dermatologist and then we are good to go.

Best of luck and keep thinking positive

Lana 

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