GOING TO DR F VERSES GOING TO A LOCAL AP DOC

[Anonymous]

Hello,

I am very new to RB, but after having discovered it last week and after having been contacted already by some very supportive people, we are regaining hope in the future.

My wife (34 yrs old) was recently diagnosed with Scleroderma.  She has no skin involvement that we can tell (as of yet).  She has been diagnosed with SD based on her SCL-70 coming back very high (550 range) 5 weeks ago.  She had it retested last week and it was back down in the 250 range.  Her symptoms are acute high blood pressure (managed sucessfully by lisinopril), sore hands (like carpal tunnel), water retention and swelling throughout her extremities, and shortness of breath.  She has had all kinds of strange pains throughout her body since October.  She is a marathon runner (2 so far) and was training for her third when things went down hill.  Her only other medical condition was hypothyroid which has been sucessfully treated with replacement hormone since 1998.

Now that we know about AP and have her dianosis, we are at a cross roads.  We would like to travel to see Dr F in California, but we live in Virginia (Military family).  Getting to Dr F would be costly as insurance will only cover a portion of his treatment fee (quoted at $4000–5000) since it is out of network for us (military insurance works funny) and the travel would be all out of pocket.

Our other option is to go with a Dr K in Northern Virginia.  He is reasonably close (2–3 hours) and was recommended to us through RB.  When I called the office I got an answer along the lines of “AP is not the preferred treatment option, but there aren't really any treatments for SD”.  It seemed that the Dr's office was familiar with AP and has used it in the past.

So my question is this, can anyone explain how/why going to Dr F in California is better than being treated locally by someone who is less excited about the treatment and has less experience.

[Goodwife]

Hi.

My hubby was diag. w/SD when he was 38 (approx 2 yrs ago).  He has been on AP 17 months and doing wonderfullly.  His symptoms were similar to your wife's, swelling, raynauds, ulcers on fingers, aches, but extreme fatigue and the scl70 high.  Dr. F as well as Dr. S in Iowa are probably from what I've read from other people, the two most experienced wellknown docs in the country to treat these types of illnesses w/AP.  However, they are not the only ones.  If you search the 'net for ACAM (American College for the Advancement of Medicine) you will see docs from all over who practice “integrative” medicine – thinking outside the box.  This may help you find an experienced doc closer to you geographically.  We are using our GP and our own research, and a naturopathic doc and also an integrative med. doc from the ACAM site to treat his SD.  Although it has been hard when we had questions to just  rely on info from this board to answer questions (which is a true blessing!) we thought our only option was to travel very far to find experience, or listen to a rheumatologist who would not even discuss AP and wanted to put hubby on the traditional meds that don't seem to work very well.   If you are diligent in your research, you will be able to find someone closer – I would think even Ohio or PA would be closer and may have what you are looking for.  These are just my thoughts.  Good luck to you! 

[whaleharbor]

Jack,

I personally have not found someone close by who truly treats with AP…so I'm flying to see Dr. T in Boston (you can email me and I'll give you the particulars).  He was closer to me than Dr. F or Dr. S geographically.  The reason I chose to go to him is that I was put on a very low micro dose of doxy 20mg (normal dosage is 10x that) from my Rheumy who gave it to me to appease me but doesn't believe in it.

While I agree that we don't have to understand or agree with it to make sure it works, I felt (for me) that I had to go to a doc who was not setting me up for failure even if his intentions were good.

Plus I feel like this is something that I should have at least have had the option of years ago (I've had RA for 17 years).  The fact that the local doc didn't even offer me this as an alternative when the American College of Rheumatology lists Minocin as a DMARD has shaked my faith in my doc…again his intentions were likely good, but the outcome for me has been not so good.

I don't want to mess around anymore with something that could kill or cripple me and/or the treatment could kill or cripple me.  So I'm seeking a real AP doc.

And I'll tell you what…if I don't like Dr. T…I'll find someone else.

Isn't our health, our life worth whatever it takes to get better?  My new theme song “We're Not Gonna Take It Anymore” by Twisted Sister!

But that's just me…

– – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Anonymous]

Thank you for the replies.  We truly appreciate the input at this point, so please keep them coming if you have an opinion on this. 

We will let you know what we decide shortly.

 

[richie]

Hi

You should look into Dr T at Harvard up in Boston –he got me all better from difuse scleroderma

Richie

[JBJBJB]

Four faith

faith in yourself —- you can fight with this disease

faith in your doctor —- you chose the best doctor who can save your life

faith in your treatment —- trust your treatment results will bring your disease into remission

faith in God

 

[Cheryl F]

Jack,

In my opinion, the biggest decision to make first is whether you choose the AP that uses only oral Minocin, or whether you are insistant on the IV Clindy therapy as well.  There are very few doctors who are willing to use the IV Clindy.  Dr. T in Boston will not do the IV Clindy.  The oral protocol has gotten many scleroderma patients well.  However, many feel that the IV Clindy gives the treatment an extra jump start and that this is the “more aggressive” treatment.  I think that you need to do the reading to decide for yourselves which treatment you choose, then, find the best doctor that can give you that treatment.  If you can find a doctor locally, Dr. S in Iowa will consult with them to provide his experience.  Dr. T in Boston will also consult with other physicians if the oral minocycline AP is what you choose.  But first you have to decide what you want.  Each of the most experienced AP doctors has their own protocol that they tend to follow. 

Cheryl

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