Happy 1 year anniversary Mommy!

[mkbeeliever]

Hello everyone!  Happy June 4th!  Just had to post today because this is mom's 1 year anniversary on Minocycline!  She's still doing great!  More great days than bad days.  We are so blessed!

We had a follow up for the last time with her doctor yesterday.  Some may or may not have caught my previous post that her amazing doctor is quitting his practice and going to Kaiser Permanente.  (mom doesn't have Kaiser) We are really devastated about this!  I have started seeing one of the other docs in the practice for my own sickness I've had for over 2 wks. (bronchitis and sinus infection) and I asked her if she'd be mom's doctor.  She said yes.  I layed it out for her…told her that I'm totally involved in mom's care and that we are not going to stop her antibiotics and that she needs to work with me etc. etc. etc.  She agreed.  So I'm feeling pretty OK about it and so is mom.  We'll see…

Thank you for loving us through cyber space, giving us your experiences, help and support.  We both know that without a doubt this board and AP has saved her life!

I wanted to share with you an email exchange between me and her doctor.  I loved what he said…we should all be so lucky to have a doctor like this!

Dear…..,
We never thanked you before we left.  I don't know what we were thinking…Maybe subconsciously we did not want to get all mushy and emotional!  Maybe we were just acting like it wasn't true!


At any rate, from the bottom of our hearts, thank you so much for being mom's doctor.  We both believe that mom would not be alive today if it weren't for you.  If you did not read that book I asked you to read and take a chance with the Antibiotics we really think she would be much worse or not even here today.  She says that all the time.  I know it's a fact.  She was really, really sick. Not that she's not still “sick”, but look at her…listen to her, see and hear the joy in her voice and eyes.  That was not there when we first starting seeing you over a year ago.
 
I hope and pray that you use the minocycline on any of your rheumatoid patients or auto immune patients.  Mom is proof it works.  For Ayanna, it was too little too late but I truly believe if she had AP earlier in her disease, she would not have died. (IVs and the Mino)
 
We really appreciate all you've done, your open mindedness, your compassion and your friendship.  We don't mean this in a “guilt” sort of way, but we truly feel like we're being abandoned.  It's like a death or a divorce.  We've grown to really love you, rely on you and respect you.
 
Again, thanks for all you've done…I personally am so grateful to you!  I secretly hope you don't like Kaiser.  I know that's bad.  But, I can't help it.

Blessings,
Michelle
Michelle,
It has been an unbelievable honor to be your mom?s doctor.  I can?t thank you enough for allowing me the opportunity to care for her.  I think, if I were not challenged by my patients to learn or try new things, I would be stagnant in my career and mediocre in how I viewed and treated illness.  Allowing me to care for your mom has given me the opportunity to learn from her (and you), which is a gift I will always treasure.
I don?t know what the future holds for me.  None of us do.  I can only answer to the present.  Giving up this practice is the hardest decision I?ve ever had to make and I apologize that you feel abandoned.  I?m getting the impression that my other patients feel the same way.  It was not a decision I made lightly but it was one I felt was necessary. 
I?ll speak with Dr. M about your mom prior to leaving the practice.
God Bless you and your mom.
JT

[mkbeeliever]

Had to share two things…today mom got her blood test results from the dialysis center and while I do not have the paper in front of me, her creatinine was down to 3.5!  While this is still way too high and this can fluctuate, her levels have declined every month since her kidneys failed in April 2009.  At one point her level was over 7.  She was on cloud 9.  We're still hanging on to hope that her kidneys are getting better!  She needs to do another 24 hour urine to really get a better look and see how well the kidneys are filtering the waste.  But, this was huge for her today!

We also got her micoplasma test back.  Her doc said the IgG was 1.21 (0.9 is a negative result.) He said this means that sometime in her life, she was exposed and had a micoplasma infection.  The IgM is negative.  Said that means that there is no active infection.  Any of you smart people want to chime in here and tell me what we should do about this if anything, that would be wonderful.  I'm still wanting her to do Clindy IV's.  Should we test at another lab?  This test was done thru Lab Corp or one of the other well known/typical labs.  Thanks in advance!

Blessings,
Michelle

[Lynne G.SD]

Michou my sweet,I know in my heart that your mom will be better and back to her normal life also.Look how far she has come….thanks to you.Give her a big hug and many kisses from me.I am sure that I speak for a lot of people here when I say that we really love her.We are all one big family,no?
       Lynne

[Parisa]

Michelle,

So glad to hear your Mom is doing well.  I wouldn't be surprised at all if those kidneys come back to life.

[Kim]

Michelle,

This is so great to read. 😀 

First of all, Kathy looks awesome, I can see improvements in each picture.  But, then to have the confirmation on paper with improved labs, well that's just the icing on the cake. 😀  Also, so great the new doc is working out………hey, you've trained one already, why not two? :roll-laugh:

Think greedy now ~ set your goals for total reversal!

Take care…..kim

[mkbeeliever]

[user=40]Kim[/user] wrote:

Michelle,

This is so great to read. 😀 

First of all, Kathy looks awesome, I can see improvements in each picture.  But, then to have the confirmation on paper with improved labs, well that's just the icing on the cake. 😀  Also, so great the new doc is working out………hey, you've trained one already, why not two? :roll-laugh:

Think greedy now ~ set your goals for total reversal!

Take care…..kim

Thank you Kim! Have missed you lately!
How was your trip?  I leave tomorrow for my little 4 day escape to the Gulf!  Praying no oil and no rain!

Yes, we have the goal set to total reversal!  Now more than ever we believe her kidneys are rebounding.  The other lab results came back from her primary care doctor.  She had one set of labs from the dialysis center and one set from her PCP.  He left me a voice message and he sounded totally shocked and said he is very encouraged by her latest numbers!  It's crazy!  There was a time when her creatinine was over 7 or 8.  Now it's 2.77 according to his lab.  Her BUN was last month 35 down to 27 this month – if I were to venture a guess and if things continue to improve I say she'll be off dialysis in a year.  God's will be done.

[Trudi]

[user=1335]mkbeeliever[/user] wrote:

…if I were to venture a guess and if things continue to improve I say she'll be off dialysis in a year.  God's will be done.

Michelle–

Off of dialysis–that sounds unbelievably awesome!! 

My very best to you and your mom–

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=1335]mkbeeliever[/user] wrote:

It's crazy!  There was a time when her creatinine was over 7 or 8.  Now it's 2.77 according to his lab.  Her BUN was last month 35 down to 27 this month

 

Michelle, this brought such a tear to my eye…the miracle of unconditional love and a little help from minocycline! One day, you gotta go back and look through all your early posts and remember where this miracle began. I sometimes do that when reports like this come in, just to remember the long, courageous path a person has taken. It's so moving.

Big hugs of healing to your dear Mom and to you, her loving, tenacious, advocate daughter!

Peace, Maz

[Kim]

[user=1335]mkbeeliever[/user] wrote:

Thank you Kim! Have missed you lately!
How was your trip?  I leave tomorrow for my little 4 day escape to the Gulf!  Praying no oil and no rain!

Yes, we have the goal set to total reversal!  Now more than ever we believe her kidneys are rebounding.  The other lab results came back from her primary care doctor.  She had one set of labs from the dialysis center and one set from her PCP.  He left me a voice message and he sounded totally shocked and said he is very encouraged by her latest numbers!  It's crazy!  There was a time when her creatinine was over 7 or 8.  Now it's 2.77 according to his lab.  Her BUN was last month 35 down to 27 this month – if I were to venture a guess and if things continue to improve I say she'll be off dialysis in a year.  God's will be done.

Michelle,

Have a great, well-deserved trip!  You really do get daughter-of-the-year award. 

We just got back from Santa Rosa Beach and had a fabulous time.  We didn't see any oil, but there were crews in the parking lots loading up miles of booms to be hauled out into the gulf.  I'll post a couple of pictures once I get caught up on the board.  I took a break from everything ~ including antibiotics and computer time. 😉  Fun time, but can't get away with too much of that……….darn it!

You and Kathy make a great team. :blush:  Even in this latest picture she almost has a smug little grin, like “ha, take that SD!”  We haven't had anything but happy reports from you in a long time which is so refreshing.  When you first joined I had to brace myself prior to reading your posts because your mom was in deep trouble and it was going to be one hell of a fight.  Apparently, you were both up for it. 😉

Take care and have fun on your girls' trip.

kim

[mkbeeliever]

[user=27]Maz[/user] wrote:

Michelle, this brought such a tear to my eye…the miracle of unconditional love and a little help from minocycline! One day, you gotta go back and look through all your early posts and remember where this miracle began. I sometimes do that when reports like this come in, just to remember the long, courageous path a person has taken. It's so moving.

Big hugs of healing to your dear Mom and to you, her loving, tenacious, advocate daughter!

Kim wrote: “You and Kathy make a great team. :blush:  Even in this latest picture she almost has a smug little grin, like “ha, take that SD!”  We haven't had anything but happy reports from you in a long time which is so refreshing.  When you first joined I had to brace myself prior to reading your posts because your mom was in deep trouble and it was going to be one hell of a fight.  Apparently, you were both up for it. ;)”

:doh:I DON'T KNOW HOW TO DOUBLE QUOTE FROM TWO DIFFERENT POSTS…
__________________________________________________________________

Kimmy and Maz,
It has been and will continue to be one hell of a fight.  We're not giving up!  I thank God for the Minocycline and the Zithromax!!  I just know this is not just a fluke.  Her numbers have declined every month for over a year.  This is not a “spontaneous” getting better, it's not anything but AP and God.  I do go back and look at my early posts.  We were pretty desperate.  She was absolutely in deep weeds.  I was so scared, she was a mess, I was crazed, sad and obsessed with helping her and you guys were and are such a huge part of her recovery!  I don't know what I would have done without you all!  I am so blessed!

[mkbeeliever]

Lynne G., Parisa and Trudi…thank you for your kind comments.  I'm sorry I neglected to say something earlier!  You are appreciated!

Blessings,
Michelle

[mschmidt]

Michelle,

I'm beyond happy about your mom's continued success on AP.  She does look SO much better than when you first posted on this board.  She has a sparkle in her eyes, although I saw it when she was sick as well…but, it's a much BIGGER sparkle:)

I pray for you two every day, and know in my heart that your mom will beat this.  You are an amazing daughter and caretaker to her, and that in and of itself makes a huge difference in her recovery.  I wish you MANY more wonderful moments, and look forward to the day when she doesn't have to do dialysis anymore.

Have a wonderful trip!

Maria

[Author]

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