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Hi
One more note–if the approach of Dr T up at Harvard had not worked –M at Pitt most likely would have been my next choice –But it did work !!!!!!!!!!!!!!!!!
Richie
Yes Richie, Dr M was great. Unfortunately I wont be seeing him now, he said I need to see his colleague Dr O because the Scleroderma is secondary to this Antisynthetase Syndrome.
John…. I think I had sent you a pm awhile back asking for more info on MP.
Anytime a patient has life-threatening lung or heart involvement then they must pursue life saving treatment while they are pursuing a long term cure. I firmly believe that the cure for SD or for Terri's disease will be AP or MP, but in her shoes I wouldn't hesitate to take steps to treat the emergencies, short term repairs, whilst I work out a treatment to keep me around for the long term. If you need a blood transfusion or dialysis, oxygen or whatever then get it, but work down the bacterial load while you are at it and don't take immune suppresants.
Also, someday soon I think Terri's disease will be diagnosed as an intracellular infection by X-Y-Z species of CWD bacteria in organs A-B-C. Doc won't rush off to show her x-rays to his colleagues, he will simply start treating her with some version of AP or MP, whatever the state of the art will be at that time. Hopefully when that day comes the docs won't be so clueless as to let these diseases progress so far before treating them. But my point is that IMO Terri has the same disease that I have, an intracellular infection, just more advanced and involving different organs and tissues, but requiring the same curative treatment (killing the microbes).
Terri, bless you, this is about the most frightening thing you could possibly go through. I wish you well.
Terri,
If you don't suppress your immune system while waiting for the AP to do it's thing your auto-immune disease will continue to have your immune system attack it's self instead of protecting itself. You can't take any chances at this stage. To simply treat your symptoms while on AP, right now at least is not enough. This is serious, hit it with all that you have at your arsenal at this point. When things stabilize you can then afford to exercise all your options. You have to be aggressive right now. This debate could go on forever. Just follow your gut instinct. Take care of yourself and keep us posted on how you're doing. You're not alone.
Peace and Prayers,
Steph
I am wondering if I can do both at the same time. Start out with the big guns while I am waiting to get into the AP doc and start the AP as well?????
Hugsssssssss
Terri
Hey Terri,
Absolutely! I am on Immuran, an immune suppressant while I continue to wait for my AP med's to hopefully put me in remission. I knew, with diffuse scleroderma (heart/lung involvement) I couldn't fool around and give it any leeway while the antibiotics kill off the bad guys. The combination of med's has not adversely affected me at all, that I notice.
Hope this is helpful,
Steph
Thank you Steph.
Can you tell me what if any side effects from the immune suppressants you have had? And what improvements have you noticed?
Hugssss
Terri
Terri,
I always have some degree of nausea with the immune suppressant and some fatigue. It isn't always pleasant on the immune suppressant but a necessary evil. So sometimes I cheat and take a little break now and again. But I don't suggest you take a break at all until things are stable. My disease damage (heart/lung) has certainly stabilized since doing immune suppressant for the last year. My AP has also lately started to kick in but it did take a while. Hope this is helpful.
Hugs,
Steph
Thank you Steph, Richie, John, and Linda… All the info is so important to me. Thank you to all of you!!!
Hugssss
Terri
For the first time in my RB life I had tears in my eyes reading through this thread. Such a great desire to share and to help, with all differences accepted and respected. You guys are awesome. And Terri your responses have amazed me, showing a level of calm focus and determination that is remarkable at this point – and that will surely serve you well. 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)Terri,
I just said a prayer for you. Hugssss to you too.
Now take a deep breath and think about what John said. The names of the various auto-immune diseases are just labels. Nothing more.
Think about what A-Friend said “Our bodies are designed to heal”. Very important!
I agree with Steph. Since your disease is so aggressive, it is probably a good idea to take some of the immune suppressing meds initially while pursuing AP. You may need two doctors to accomplish this. The AP takes time.
One more thing you can begin doing now, is eating as nutritiously as you possibly can. Skip the sweets and processed, refined foods. Eat meats and veggies plain and simple. Avoid red meat temporarily as it aggravates inflammation.
Buy a juicer, a good juicing book like “Juicing for Life” and start drinking some fresh vegetable juice every day to be sure you are getting plenty of nutrients. A study from Yale discovered 70% of our immune system resides in our gut so you can bet that all of us with chronic illness have a damaged gut.
Nourishing your body down to the cellular level will give your body its best advantage to assist the medicines and heal as rapidly as possible.
You may need a good doctor trained in integrative and nutritional healing to get your body in optimal fighting condition.
So, suppress the immune system initially to help you get past the crisis point, while also beginning AP to deal with the microbes that are certainly in your body and heal the gut which houses 70% of your immune system.
God wants his children to be well.
Love to you!
Susan
Which books on better eating and what to avoid do you all recommend?
And I hope that some of the receipts in the Juices for life are better then some home made juices I have tatsted LOL
Hugsss
Terri
Terri wrote: Which books on better eating and what to avoid do you all recommend?
AF replies:Terri,
Am thinking some of Dr. Garth Nicolson's writing about nutrition and supplements may be helpful for you, and have included some links below.
Best to you, AFhttp://www.immed.org/publications/PORnicolson_copy.pdf
Suggest reading page 141 of the above link… from Dr. Nicolson's web site — for a general overview of his recommendations (these are contained in NT Factor, a lipid replacement therapy dietary supplement).Note: His Dietary Considerations article is very good; however, for some reason it is in huge print and cannot easily be viewed. I've contacted the Webmaster about this, so hopefully it will be corrected. A search found what looks like the same article by him on other sites, and have been included below.
http://www.fibromyalgiasupport.com/Fibromyalgia.cfm/id/5233
[This has Fibromyalgia in its heading, but could no doubt be a very helpful one.]http://www.immed.org/illness/treatment_considerations.html#publications
http://www.immunesupport.com/library/showarticle.cfm/id/3986
Hi Terri,
I have been in your shoes and at that time I did not know about AP so I went with the Cytoxan. Big mistake. It only made things worse after stopping the cytoxan. Along with the pulmonary fibrosis I also have no motility in my whole digestive system because of the Scleroderma. In my case I needed multiple antibiotics and a good antifungal and lots of vitamins and digestive enzymes. It has been a slow road with lots of bumps but I have made so much progress. I do not understand why your doctor is even considering cytoxan as in many studies done it proves it does not work. I actually think that had I not taken the cytoxan, my disease would not have progressed so fast. I do agree you must address the inflammation for the antibiotics to penetrate. All the best and I will be thinking of you.
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