Which Dr. to use for IV AP and moving forward?

[A Friend]

[user=439]amyid[/user] wrote:

Hi my name is Amy…….  I now have an appointment in AUG!  I am excited, but was a bit nervous at how casually they set it up.  I guess partly I feel I am “stepping outside the box” and I traditionally follow mainstream medical practices.  This just seems right, though.  

Amy, about your observation about “how casually they set” your appointment.  It probably does not seem out of the ordinary for them.  That office has been doing this constantly for about 20+ years, and patients' results have been outstanding.  Some older, longtime patients have come in in wheelchairs, I was told, and by the end of the 5 days of IVs, some have already seen improvement in their abilities. 

Also, about your  traditionally following mainstream medical practices, most of us have been conditioned to think that is a good thing… until we learn about and need AP.  What it has come to mean to me after 16 years of having to virtually figure out other related things for myself is that medical school, when it comes to treating chronic illness, greatly under-educates med students in how to treat the causes of our problems, and greatly over-emphasizes the writing of the prescription that temporarily alleviates symptoms, but does not result in diminishing the cause of the illness. nor treating it — nor have most of them been aware of simple ways to keep their medications from causing yeast overgrowth and other maladies. 

So, you can see how and why I and many others have embraced the rare AP physician who sends a lab test to a special laboratory and determines there are mycoplasma, etc. infections, and then prescribes an abx that is FDA approved for treating these particular infections.  Again, I emphasize:  To me this is not treating outside the box of what should be done; it is, however, treating outside the box of what usually IS done. 

Sixteen years of all this (about 11 as a support group leader) has greatly tried my patience, and made me sound cynical.  Guess I'm tired of having to too often be my own physician and work so hard to solve my own problems, when they went to medical school and I didn't.  When it comes to treating chronic illness, our system could… and needs to… do better!

It's normal for us to be a bit fearful.  It's seems like we are jumping out of a plane without a parachute, because we have been conditioned to think that our physicians can solve our problems and will take good care of us.  Some of them can do a pretty good job, but we have to look much too hard for them.  But, I believe we always have to fine-tune some of our problems, as our physician cannot know everything about us, as we are very complicated beings.  We have to educate ourselves, and this is hard work.  

Keep the faith.  Dr. S. is a very good and experienced physician.  He even delivers babies… very mainstream thing to do, huh? 

AF

[magsmc]

Thanks, Fran.  It's nice to find someone who knows the boat I am in!  I've also never spent more than maybe one night away from my kids.  I also don't have a huge family support system, so it will be my husband staying with them and I'll be on my own.  I'm trying to gear up for that and hope I won't need support while I'm there.  I am praying for a good result!  I appreciate your comments.

[magsmc]

Sorry, I haven't figured this board out and didn't know where my last post would land!  Thanks EVERYONE who responded here.  I am grateful to have found this site.  I only wish the internet had been more prevalent when I was diagnosed in 1993!  For years I was on my own and it was difficult to get information.  It's amazing now how information can be shared.  I do appreciate this board and everyone's support as I start this venture!

[amyid]

AF~

Thanks for sharing your experience.  I, too, have had to do my own research and investigating when being treated for chronic sinusitis and IGg deficiency :sick:a few years back.  So I do understand the necessity to be your own advocate.  I found a DR. then who had written a book about the role of fungal infections and chronic strep. I worked with my ENT, though he was a bit hesitant, and had some great success on the “alternative” treatment.  (It was very logical and used “traditional” meds, but like AP for RA, those “traditional meds” were not the “norm” as taught by most med schools for treating sinus issues).   

My fear is just of the unknown.  Which I think most people share.  You are right, a lot of it is due to the conditioning of the societal notion that Dr.'s know best and if it isn't the “majority” belief, it isn't the best.  I am working hard to get that conditioning out of my head.  However, this RA diagnosis is new and my head is spinning:crying:…from the diagnosis, from the pain, from my meds, from fear that AP won't work…I am still finding my feet, so to speak.

Thanks for everyone's stories…knowledge is key and shared experiences are a great way to learn.

Peace,

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[lynnie_sydney]

Hi Amy and magsmc – I first became symptomatic in 1987, received a diagnosis in the early 90's – and found out about AP in 2001. Even though my condition was longstanding by the time I tried AP, I have had spectacular results. 

However, it can be a little daunting at first to know whether you are doing the right thing for yourself, given what you may be told by docs and by other people. As you continue to educate yourself, however, you will find that you become more comfortable with the concept of being the case manager of your own healing and wellbeing and of seeking out expertise to assist you though not to dictate to you. Let me tell you a little about me to illustrate this. My change in perspective came a few years before I even knew AP existed. I sat for 2/12 hours in the rheumatology dept of a major teaching hospital waiting to see an eminent professor who did not take private patients. I watched a parade of grey, wizened and crippled people go past me. I was shocked and, at first, in despair – I was 35 and I thought my life was all but over. Then, inside, something suddenly shifted and I had the strongest conviction that this was NOT going to be my road. Whilst not having the slightest clue of what would turn up a few years down the track, I believe this was a turning point for me – that day I decided to “swim upstream”.   

You have already made that decision. You'll find plenty of great people here to swim alongside you and encourage you when you need it. Best to you both. 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)

[amyid]

Lynnie,

Thank you so much for your post.  Your “swim upstream” moment was profound.  Thank you for reminding me I am a fighter.  I will have to set my mind on this, I have worked hard to fight for myself in other areas of my life, why not FOR my life?  I think that's why I am so tentative…my life (as in a good “quality of”) is riding on this.   Your words were laced with understanding and compassion for that, I thank you.  I appreciate that you remember how scary it is for “newbies”.   Your post left me with more peace in my heart.:blush:  On that note, I am going to tuck my kiddos into bed.

Good night!

Peace,

Amy

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[magsmc]

Lynnie,

You brought tears to my eyes.  I have been trying for 15 years to be a fighter and to “swim upstream”.  Although I have had this determination, many times I waiver, and it is difficult as I really don't have a support system.  Most of the people around me either ignore the situation or give me the pity act, and most sort of roll their eyes when I even mention going against mainstream recommendations, even to the point of making me feel guilty or that I am jeopardizing my children's future by doing so!   More recently, I have been resigned to a degree, feeling a sense of helplessness about this disease and my future.  I am glad I re-stumbled across this forum.  I konw I have an uphill battle, but I am willing to fight it.  Thanks to you and this forum for helping me get my sense of hope back. 

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