I'm sure my doctor thinks I'm a loon!

[Alli]

Hi Everyone,

Well my much anticipated visit to my lung doctor proved to be all that I had hoped for, in my opinion!  Of course, my doctor, according to his notes which is why I HAD to attach, I'm pretty sure thinks I'm a lunatic – but a happy one nonetheless!  I was going to just take excerpts from his notes but didn't think that would do his notes justice. 

I had a full set of lung fuctions performed and all 3 areas had shown signs of improvement, yeah, yeah! 

Here's a break down over the past 3 1/2 years.  I have to do this so I can physically see the changes and hope some of you can add your thoughts.  **Had to edit my results – noticed that I had posted incorrectly**  Now I can really see that everything has increased, especially the FVC – the best it's been in 4 years and the TLC is the best ever.  Diffusion, although better, still low.  I don't know for sure what is the best PFT to look at in regard to improvement.   Meaning which one of the 3 tests is the most significant tracker.  If anyone has any insight on that, please let me know – thanks!!!

3/2010 – FVC – 1.34, 43%    TLC – 3.08, 65%     DIFF – 6.53, 25%

STARTED AP NOVEMBER 9, 2009

9/2009 – FVC – 1.12, 35%    TLC – 2.24, 47%     DIFF – 4.13, 16%

4/2009 – FVC – 1.21, 39%    TLC – 2.58, 54%     DIFF – 7.77, 30%

7/2008 – FVC – 1.24, 39%    TLC – 2.47, 52%     DIFF – 11.87, 45%

STARTED CELLCEPT AND TRACLEER DUE TO PULMONARY HYPERTENSION (7/07)

7/2007 – FVC – 1.36 – 41%   TLC – 2.74, 57%    DIFF 10.3, 46%

8/2006 – FVC – 1.29, 39%    TLC – 2.45, 50%     DIFF 11.4, 43%

I didn't have a repeat ECHO, we will do that again in 6 months, but my last two echos numbers are: 

8/2006 – systolic pressure was 32 mmHG

7/2007 – systolic pressure was 56 mmHG

9/2009 – systolic pressure was 52 mmHG (due to Tracleer & Cellcept??)

He did not want to give any credit to AP Therpy or Dr. S, no matter how often I asked him to explain the little change, as he called it.  It's funny because in September he commented several times of the significant decline in my Diffusion (4%) and that he was extremely worried about it.  That was the visit he sent my information to University of Colorado for transplant consult.  But now that my DIFF showed a 2% improvement over 6 months, his comment was well, it's a “little” bit better.  Ahhh but a little bit better is still better.  I did give him an “out” -asking him if he thought the improvement was just a fluke – he did not respond.  I must say I was in a happy, teasing mood, I'm not so sure he appreciated me. 

And of course, he couldn't help but add that I am more involved in my disease – well of course I am, since I found roadback – but why waste my breath explaining.  As I said in my first post, for years I was in denial and he was at one time the dr. we referred to as “Dr. Death”.  So, I don't get why he doesn't realize why I wasn't anxious about keeping my appointments with him.  All he ever wanted to talk about was cytoxan and that was a NO NO in my mind!  And I cried everytime I saw him and felt like I was dying.  This was my first office visit with him that I didn't find myself in tears.    Actually I did almost cry – they were genuine tears of excitement. 

He did still recommend that I seek a consult with UOC so I said I would consider it, after my next round of IV treatment in May.  He stated that he would like for them to evaluate me and atleast get my condition and information in their system so they have it should I continue to deteriorate-GRRR!!!!   I know what you're all thinking…..fire him, right?  Well, that thought did cross my mind, many times, but now I'm at the point where I want to show and prove him wrong and possibly open his eyes and mind to healing other AI patients with non-toxic drugs.  Is that so wrong? 

I am also attaching a copy of my last labs, they are just standard labs because of the Tracleer but good news is:  This is the first time my panels have ever come back without any stars indicating something is too low or too high – another milestone – yup!  In the past my hgb, hct, mch, mchc, total iron and iron binding has been extremely low, my platelets, RDW, CO2, high.  Could this be from the minocycline?

When I received the notes yesterday I laughed outloud as I read them and wondered if he knows that I request copies of his notes.  Jeepers, he really does make me sound like a loon.  I decided I didn't care – I will laugh myself all the way into remission, no matter how long it takes.

I am still doing well – still feeling like I am improving and filled with hope.  I am however considering being tested for celiac and lyme, just from all the reading I have done.  If, infact I do test positive for lyme I don't want to waste any time working through a protocal that needs to be changed up.  The celiac thing, I am hoping that I don't have because I'm not so sure I can cut out all those goodies – even if I know in my head that ridding myself of those nasty food toxins would make me feel better, with or without an AI disease.  

I asked about adding supplementals to my care.  I was worried about interaction with the drugs that I am currently taking.  He seemed to think everything would be okay, so I am going to add Omega 3 and Neprinol for starters.  Just have to do a little planning and budgeting – but looking forward to it as I think the Neprinol will really help.  He suggested taking a multi-vitamin, which I have never done! 

So, my next visit is to my rheumatologist – that is the end of April.  She has already received lung doctor notes so it will interesting to see what her input it.  Oh my goodness the saga to good health continues.

Thanks for listening, reading and sharing your thoughts……….Alli

[lynnie_sydney]

What a – great story Alli, I can feel you smiling all the way from Sydney. Thanks for sharing your good news. And I know you may want to prove yourself to your doc – just dont waste any precious energy you could be using on your wellness journey doing it – many of them just dont cant believe it, too far out of their paradigm to accept. 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)

[mkbeeliever]

Good for you Alli – I'm cracking up reading his notes.  Hysterical.  You go girl, show that man, make a believer out of him!  Congratulations on all of your improvements!!!  Dr. S is who you need to put your trust and your energy into.  This doctor is very jaded.  :headbang:

Blessings,
Michelle

[Kim]

This is great!

What are you thinking, Alli, “going off on a tangent with this physician in Iowa.”  :roll-laugh: I also love his comment about you getting involved in your health care.  Really, how dare you? :roll-laugh:

I predict your doctor will try and tell you you went into spontaneous remission.

So happy things are improving, Alli.

Take care…..kim

[mschmidt]

Alli,

Congratulations on your good news–that's just fantastic:roll-laugh::D  Not surprised at your doctors notes–go figure that you actually care about being your own health advocate…ugh!  Like Lynnie said, don't waste any energy trying to convince him, and instead focus that energy on healing–it's much better served there.

Keep up the good work!

Maria

[Kash]

His notes were that of a loon.  He sure did get his knickers in a bunch over your other “treatment”.  My last appointment with a dr did the same thing – he was fixated on this “other treatment”.  I couldn't get him to stay on “his” treatment.  Wouldn't it be nice if they spent just a little more time thinking about what we are saying rather than wasting time having a hissy fit over it?

Your sense of humor is great ~ thanks for the smile.

[Parisa]

For some reason, I wasn't able to read the attachment but I've got a good idea of the kind of comments he made.  I'm sure the first rheumie my husband saw had all sorts of nasty things to say about me.  I'm so happy to hear about your improvement.  If you haven't already, look into NAC as I truly believe it with Zithromax was fundamental to turning my husband's lungs around.

[lizbeth]

Hi Alli,

Congrats, it's good to see an improvement!  I loved the notes, it interesting that he saids you seem to be going off on another tangent…  How rude, just because it's not his way doesn't mean it's the wrong way.  I hope you just get better in leaps and bounds and prove him wrong! 

I also like that you have requested his notes, I must remember to do that!

Lizbeth

[Alli]

Thanks for the responses, makes for more smiles and giggles on this end.  It is great to feel like I have more control over my situation and it's wonderful that I have found all of you.  The updates, discussion and stories on the site play a great part in keeping my faith and hope in better tomorrows.

Parisa, I have also been checking into NAC, can I or should I use that with the Neprinol or would that be overkill? 

Alli

“Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all”  – Emily Dickinson'

 

[lizbeth]

Hi Alli,

Thanks to you I've decided to be more proactive and call my dr to request a copy of all my blood tests for the past year!  Like many others, I left my disease in the hands of my Rheumy (big mistake)!  I will now take charge and know my no's etc.  Hopefully this info will be useful for my new AP dr.  I must say, I do feel empowered:cool:

Lizbeth

[heatherbell]

Good on you Alli,

Glad to hear everything is going along “ticketty boo” health wise.  I too felt like a loon (or should I say the doctor made me feel like a loon) in the course of treatment I have decided to take.  BUT like you, I hope to prove him wrong and when I do succeed I hope he will be another doctor to practice AP therapy for the better cause of AI people who want to make a “choice”, not the doctor or rheumy who make the choice for us.  Good news like yours gives hope to a whole lot of other people.  Enjoy your happiness!

[Author]

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