Can't get a diagnosis!!

[Lynne G.SD]

Hi Charli;
    It sure sounds like you have SD but don't worry as SD responds very well to AP.probably much better than Ra and co..Read the posts set up on Randy's thread.I am sure most SDers will give you lots of info.

[Maz]

[user=1799]charli[/user] wrote:

Thanks for the info.  I really appreciate it.  I was going to ask if there were any AP doctors in Indiana as I am approximately 30 minutes from the Ohio Indiana line.  I should have mentioned this earlier.   Thanks for all your help. 

Charli, sorry the list for Indiana is not too spiffing either and you're probably best off with Dr. T in Parma, in all honesty. Kim, our other volunteer who lives in Indiana, can tell you about why she made the decision initially to visit Dr S in Ida Grove, Iowa, after reviewing the few Indiana AP docs on the list, but then changed to a Lyme Literate MD (LLMD) when she discovered she had Lyme disease.

I will send you what we have for Indiana, but do recommend that you speak with Kim further about these docs. 😉

All the best in your searches!!

Peace, Maz

[Kim]

Hey Charli,

If you have a rheumatologist currently willing to rx Minocin I would definitely stick with him until you can find an AP doctor.  I have SD and had a terrible time getting diagnosed too, in fact, I had to figure it out myself.  When I asked my rheumatologist to prescribe Minocin he refused so I fired him.  My PCP was willing to rx the Mino even though he, didn't then and still doesn't, believe in the infectious theory.  I later traveled to Iowa to one of our best AP docs because I was unable to find anyone around here in Indiana.

The point I want to make about SD is that it can spread like wildfire and the sooner you can stop the progression the better.  It took me about four months of Minocin to stop the progression and longer before seeing results, so you should not expect too much too soon.  Absolutely, you should stick with the Minocin and keep up with the probiotics.

SD is a vascular disease and we all have circulation problems, hence the Raynaud's.  Most of us also have hypercoagulation (thick, sticky blood) and blood vessels that have collagen buildup compounding the whole problem.  I have benefited tremendously from enzymes (Neprinol, specifically) to thin the blood and frequent use (almost daily at first) of an infrared sauna.  The sauna will help you detox, but more importantly it will improve your circulation and the heat aids in fighting infection.  Today my Raynaud's is almost totally gone and I'm in remission.

Sadly, we're in the wrong state for AP, but don't despair, just learn everything you can and try to find a doctor with an open mind.  You might want to search for a functional medicine MD to see if they would be open to helping you.

Hang in there………you can do this. 😉

Take care…..kim

[charli]

Hey Kim! 

Thank you!  Your story makes me so hopeful in figuring all this out!  It is so hard not having a dx and knowing for sure what I am fighting.  Even with the positive scl 70 antibodies and what I feel are definate symptoms of scleroderma, doctors just don't see it. 

You said you had problems getting diagnosed, who eventually diagnosed you?  Was it the doctor from Iowa?  I would love to go see him but I really cant afford it right now.  Maybe after the first of the year, with my income tax.  Does it take a long time to get in?

I go back to the rheumy who prescribed the minocin in a couple of weeks.  He was very reluctant and I have actually cancelled a couple of appts just because he was so hesitant and I have been unsure what exactly to tell him.  My problem is I don't know if I should keep taking the minocin as I don't think I feel any better.  Could you read my latest post under probiotics and let me know what you think?  I guess my problem is not knowing if continuing the minocin with weird yeast issues is doing me more harm than good.  I am also concerned about him not knowing what blood work should be done, tests, etc. I sometimes wonder if I might be a little sensitive to the minocin unless its the yeast, or just the actual progression of the disease???  Its all just so confusing! By the way, he doesn't believe that I have scleroderma but offers no explanation of my symptoms.

As far as getting more minocin, if he is not willing to give it to me, I think my family doctor will.  He actually believes in antibotics to treat rheumatic disease!  I just dont know how knowledgeable he would be with the whole AP protocol.

Also, you mentioned enzymes (neprinol), do you have to get a rx for that?  Would they be good for someone who does not have raynaud's?

Sorry for all the questions!  I appreciate all of you on here!  I will try not to give up!!

Thanks again!

Charli

[Kim]

Hey Charli,

I read on a Scleroderma site several years ago (I'd never be able to find it again), but it said rheumatologists don't like to give people the diagnosis of Scleroderma because there is nothing good out there to treat. :headbang:  I was actually glad when I read that because it made me more aware of what I was up against and got me going.  He kept stalling me all the while I was getting worse and doing nothing was not an option for me.  I had almost every classic symptom and he still waffled so I bailed out and went to my PCP.

Going solo on this treatment is not ideal, but better than no Minocin at all.  You didn't mention what dose you're on, but if you're taking 200 mg/day you may want to cut way back and/or try pulsing.  I never did well on daily dosing, but did fine pulsing 200mg on Mon/Wed/Fri.  Most SD people do fine on daily so you'll have to figure out what dose will work for you, but either way you'll want to start low and work up.  Sounds to me like your rheumy is going to fight you every inch of the way and you don't need that.  Before you fire him, I'd make sure you have Plan B in place, though.  Your family doctor at least sounds more open-minded and will be easier to work with.  Any doctor should know what labs to run based on your disease and meds.

I don't remember exactly when you started AP, but if you just started it is unreasonable to expect results right away.

Please go to the Home section, under the Education tab and read the Physician's Protocol.  It will be useful to you and your doctor(s).

Neprinol is not a prescription and can be ordered on the web.  I usually use vitacost, but they all seem to sell for the same price.  You can do a search on the web and also this board because we've discussed it in the past.

Take care……kim

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