New and wondering about doctor visit tomorrow

[kerry23]

:crying:Hello,

My name is Kerry, I am going to my first visit to my scleroderma “specialist” in Saratoga Springs, NY.  The doctor's name is Dr L. S. and I was curious to know if anyone in this forum has ever been to him and if he will treat me with Antibiotic Protocol.  I am very excited and nervous but I am just want to try this treatment before they put me on all these other medications that are so dangerous.  The thought of some of them scare me to death!  I was just diagnosed in late June and I can't believe how rapid this disease is progressing. 

Doctor's full name removed as per Forum Guidelines. Thank you for your understanding. RBFV

[lynnie_sydney]

Welcome to the Forum Kerry. As you may have seen from the notice, many people are experiencing problems accessing the Forum at the moment so you may not get as many replies as you normally would.

Do you have a list of AP Doctors? If no and you would like one, please send a Private Message (PM) to request one. One of the U.S. Volunteers will forward you one for your area. They will also be able to forward you a list of the most experienced AP docs in the country if travel is an option. So that your message does not get lost while we are experiencing these difficulties, send a  PM to my board name 'lynnie_sydney' with your email details. I will pass that on to one of the U.S. Volunteers and they will email you the list(s). To send a PM click on 'no new messages' above, then type in my name in the PM box address line and send you message. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Steve201]

kerry

the disease is very scary but sometimes the cure seems worse than the disease….make yourself up a 3 ringed binder…put all your test records…doc's notes..questions you have..any research into that binder…

take it with you whenever you go to the doc and don't leave there until he answers all your questions….

as for AP…if your in rapid progression ..they need to stop it and then use the ap for healing….to me that sounded funny but it seems that's the way it worked…stop the fwd motion of the disease sometimes takes strong stuff to make it reset the body..

then they use the ap to help the body heal ….

 

good luck..hope this helps..

Steve

[richie]

Hi–I really dont know if he uses an antibiotic approach to treating scleroderma but he has an excellent background —If this doesnt pan out you might consider going to Boston to see the Harvard doctor —

richie

[RickinCA]

Steve –

By strong stuff, you are referring to the establishment meds, eg MTX, Celcept, etc?

I wasn't aware you had been on those as well.

thanks,

rick

[Steve201]

[user=2703]RickinCA[/user] wrote:

Steve –

By strong stuff, you are referring to the establishment meds, eg MTX, Celcept, etc?

I wasn't aware you had been on those as well.

thanks,

rick

Rick

I was on cytoxan/prednisone ..nasty nasty stuff…hard to take and keep down..

I was on it for about 2 yrs…took me about a yr. to get off prednisone..

 

Steve

 

[RickinCA]

Gotcha, Steve.  That was probably via Dr. F up where you are as I remember. Your symptoms sound so close to what I've been dealing with. Cytoxan and prednisone sound pretty intense for sure.  Assuming you were aware of AP when you chose the your first treatment regimen.  It sounds like you made the perfect decision to me, based on where you are today.  I will definitely keep that in mind as things plod along. 

rick

[Steve201]

Rick
Dr. F made the decision with consultation with Dr. S…I was loosing the battle and they felt they needed to get me reset in a hurry….later…we added mynocycline which immediately started helping….mainly in the intestinal track..due to hyper pigmentation from the flourecent  lights…I changed to tetracycline..
Dr f moved to UCLA about a yr into my treatment….Dr. S has been the coach from then on….
now 10 yrs later..I'm still vertical and driving my wife crazy…:cool:
if your having the same progression…get serious…you may need to be on cytoxan/predisone combination..that's a consultation and lab study you and your doc needs to look at…mine was really aggressive…..at one point I'd lost about 28% of my lung capacity …don't wait for a second to concider whatever you need to do …

when the lungs get involved…it seems like the disease really takes off…

Steve

Physician's names removed per RBF policy.  Thank you for understanding.

[kerry23]

Thanks to all that replied.  What a disappointment.  He will not and does not believe in A/P treatment.  Told me there is not much joint pain involved with Scleroderma, oh yeah?  Why do I wake up so stiff and in pain everyday?  He doesn't think I have Fibro, I do, he does think I am overlapping with sjorems, which I figured.  No Lupus, No RA, Okay with that.  He just wants my lungs tested but I am not short of breath but I will do it.  I was not happy with this doc.  Want to go to another in Berekely Heights who might do A/P.  This doctor told me a doc that will do it in Rheinbeck NY.  That seems to be the biggest problem here is finding someone to put you on this type of therapy.

[nspiker]

kerry,

What a disappointment that your doctor was so resistant to try something as benign as minocin:(.  When I was first seeking a doctor to prescribe AP,  I had to write a letter and plead with my rheumatologist for minocin.  After many discussions, he finally agreed.  My regular general doctor had no problem prescribing antibiotics for me.  He was a godsend.  You may want to ask your PCP if he can prescribe for you, so that you can get started. 

There have been so many people here of late, with scleroderma-induced lyme.  Have you considered getting tested for lyme and co-infections? 

nancy

[kerry23]

I have been tested and only band positive or reactive was 41, Over the course of the past 2 years I have been on heavy antibiotics for ear infections so one of those antibiotics could have knocked out the ear infection along with lyme (unknowing if I had it).  Co infections?  No, I know Igenx is a good test for that.  I am at my wits end trying to find someone who will treat me with A/P.  Where is the formula for me to print out to give a doctor?  I know it is somewhere on this site, can you show me?

[nspiker]

Kerry,

To access the site information, go to home in the upper right hand side, then select newcomers.  It will bring up all the information. 

I have been tested for lyme five times, and it was always negative.  Igenex test was negative, with ONLY band 41 positive.  You can't trust your test.  I was on AP for months, with no improvement.  Based on the number of SD patients who test positive for lyme, I would pursue more testing.

nancy

[kerry23]

So you are on the antibiotic protocol and nothing is working yet?  Are you becoming worried that it might NOT work?

What is that 41 band?  Does it mean we had it at some point?  Does it mean infection somewhere else?  It states syphilis, which is ridiculous on my part.  How long have you been on Monocyin?  Do you feel any better?  I am getting very confused on this whole matter.  Did Lyme create the autoimmune disorders?  If you want to talk directly feel free to email at kerry23@optonline.net

[Kash]

Sorry to hear about your appointment. It is not uncommon to have a visit like yours. As hard as it is some days, just keep pounding the pavement for someone who will listen and help you. If finances allow, you may have to travel to a Doctor who is familiar with all this…

Hang in there. The fine folk on this board will give you resources and a caring ear.

Barb

[nspiker]

Kerry wrote:

So you are on the antibiotic protocol and nothing is working yet? Are you becoming worried that it might NOT work?

Sorry, I didn't make myself clear.  AP alone did not work for me, and even though I tested negative for lyme, I am currently being treated for lyme and babesia.  I am much improved with this treatment.  My point is, even though you test negative with ony band 41, doesn't mean you don't have lyme.  Ultimately, lyme is a clinical diagnosis.

Band 41 can cross-react with viruses, and other bacteria that have a flagella.  It can be lyme, or it could be some other bacteria/protozoa. 

Lyme, in many cases can cause many autoimmune disorders.  That's why it is good to rule it out, because it is the “big daddy” of bad bugs.  It takes an arsenal of drugs to kill that beast!  Minocin alone won't touch lyme.

nancy

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