My AP Doctor Visit Yesterday–1 year already?

[Conniel7777]

Hi All,

 Just an update on how my AP is going…

Well, July 31st will be my 1 year anniversary of being on AP.

Before I started AP, I had Raynauds and some fnger swelling.. those were my only obvious symptoms.

6 weeks into AP, the skin on my face began to feel slightly tight, like the way it feels when you have a sunburn.. just a bit tight. ( you couldnt see any tightness at all, but I could feel it )

This freaked me out, as I had previously NOT HAD ANY OTHER SKIN TIGHTENING.. ( can you tell I am freaked out by my using all caps here?? )

But I reminded myself over and over.. everybody says you will get worse before you get better….

So the tightening was my “worse”…

Thank God my worsening of symptoms didnt manifest itself in other ways.. there are many other SD complications that I could have ended up getting worse with, but I didnt, so I will take the slightly tight feeling and be happy with it. ( well, ok.. not actually happy, but…)

Over the last year, I have found out that I have “mild mitral valve regurgitation”. I may have had this since birth, and it may have nothing to do w/ SD or Lyme… or it may have been caused by yet undiagnosed Lyme.. I dont know. but I wasnt happy to hear I had this… I have accepted it ( because what else can I do? ) and now I am thankful that I know because I will at least be able to keep an eye on it w/ a yearly echo. Same goes for tiny cysts on the thyroid.. dont know what caused them, but right now, they arent doing me any harm. I just need to have an ultrasound on my thyroid once a year.

As far as what has gotten BETTER for me, well.. my carpal tunnel disappeared completely very shortly after starting AP and hasnt returned.

My major fatigue disappeared as well. ( I didnt even know how fatigued I really was until it disappeared! ) these days, when I get tired, its because I went to bed too late and got up too early and did too much in between! its no longer a heavy blanket of tired-ness that always hangs over me. 🙂

So, as far at my latest Ap doctors appt yesterday…

It was an improvement over my last visit from 3 months ago.

SED RATE: The 1st time I had my SED rate checked, it was 30 something. 3 months ago, it was 70 something.. not good. at yesterdays visit, it was 50 something. Dr. W doesnt know why it spiked ( as I didnt have any obvious colds or the flu or anything like that ) but hes happy that its on its way back down. its still not back in the 30's.. and even if it was, even that is too high, but at least its coming down again. Even though its improving, Dr. W wants it to come down a lot more.

ANA: Still 1:1280. no change there. Dr. W said that doesnt bother him at all.

BP: 112 over 64. Yahoo!  ( no change.. its always this good )

HEART RATE: dont remember, but they said it was normal.

CRP: NORMAL!   WOOO HOOO!!   I'll take that!

SKIN: Dr. W's exact words were “Your Skin Looks Great!” :roll-laugh: the only place you can actually see any evidence of anything with my skin is on my fingers, especially on the right hand.. the fingers there are puffy and a bit shiny and stiff. they dont hurt at all, and I have full use of them, full range of motion, etc. he adv me they may be the last things to improve. thats ok.. I can live with that.

WHATS NEXT:

Right now, everything remains the same as far as my Mino dosage: I take a total of 150 mg a day: 100 in the morning and 50 at night. he said that after my next bloodwork ( on October 2nd ) if my SED rate isnt coming down fast enough, he will increase my dosage of Mino to the full 200 mg a day. ( anyone on this board who knows me knows that I have been wanting that to happen since about DAY 1!! you always hear how its the “gold standard” and how thats the magic dose for SD, etc.. so I wanna be part of the magic club, too!! ) but like I said, he may also opt to keep me at 150… it all depends how my SED rate looks after my next blood work.

So.. thats about where things stand at this point.

The only other thing that has been really annoying me of late is my neck.. the skin there felt tight lately; tighter than normal. tight to the point that when I tilt my head back and look up at the sky, the neck skin is tight enough that it even pulls on the skin of my chest. again, the skin doesnt LOOK tight, but its something I can feel. I think I solved the mystery, however… long story short, I had been using my infrared sauna pretty regularly while it was cold, because it felt pretty darn good to come in from a 20 degree day and soak my cold bones in the sauna..  well, fast forward to the heat waves we have been having on the east coast, and well– who the heck wants to come in from a 105 degree day and get into a hot sauna?? so I stopped using it.. and next thing you know, my neck started to feel tight. One day I put two and two together and I realized that the tightness in my neck had really increased since I had stopped using the sauna…

DUH!!!  what is wrong with me? I am taking Mino, I am killing the Mycos, they are releasing all of their toxins, and how am I getting those toxins out? I certainly dont drink enough and most days am somewhat dehydrated.. I wasnt helping my poor liver and kidneys do their jobs at all…so I figured I needed to get back in my sauna. Since I have begun using it again, I have felt the skin in the neck area has gotten less tight. the more I use the sauna, the better my skin feels. so, now, no matter how hot it is outside, I use the sauna. I just come inside, turn up the air conditioning on high, and once I am nice and cool, I jump in for 20 minutes, sweat buckets, and I am out.

So, thats it. No major miracles yet.. but really, I am happy to have slowed the old SD freight train down; even if it hasnt come to a complete stop, at least its beginning to slow. eventually it will stop, and then the BIG FUN happens.. when I get to turn it around and put it into reverse!!  but, one step at a time. I know its a slow process, and I have to remind myself of that 100 times a day, because if there is one thing I am NOT, its PATIENT! I want instant gratification, instant results.. thats why I dont play guitar. ( before you say “What The H*ll is she talking about?” just give me a second..)

In the 7th grade, in music class, they introduced us to several musical instruments, and one of them was the guitar.. they sat us down, gave us each an accoustic guitar and a pick, and showed us how to press down on the strings with one hand and pick with the other.. after 45 minutes, I said to the teacher “I quit. I am not doing this anymore.” and she said “Why do you want to quit?” and I said “Because my fingers dont work that way.. they dont work independently like that..I cant make 1 finger press on 1 string while another finger presses on another; my middle finger wants to go where my ring finger goes! not only that, but the pressing on the strings has made my fingertips sore!” and she said “Well, this is your first day– everybodies fingers are like that, and everybodies fingers get sore.. once you practice, your fingers WILL learn how to move independantly and they wont be so sore after a while.” and I said “But I thought I was going to learn how to play a song!' and she said “Well, you will.. but not after 45 minutes!”

My reply: “Well, forget it. I quit. my fingers dont work like that, they are sore, and I cant play a song, so I dont want to do this anymore.”

Yes, people.. I thought I was going to be strumming out a song on a guitar 45 minutes after picking one up for the very first time. When I found that was not to be, i was out of there.

Its kind of the same with physical exercise.. if i am going to do stomach crunches for a week, i want to see Ab muscles.. YES, after a week! if I do butt exercises, I expect to have supermodel butt virtually instantly! when I play Monopoly, if another player buys Boardwalk or Park Place, I drop out of the game because I figure “Whats the point now? they just got the best property!”

Yes, just like Veruca Salt from the Willy Wonka movie, “I WANT IT NOOOOWWWW!!!”.

I have always been that way. its a personality flaw. I know this.

Makes being on a slow AP time line a very, VERY hard thing for me to deal with.. I wanted to take Mino for a month and be cured…  HA!!

I really gotta get over it.

Hope everyone has a great weekend!

Your friend,

 

Connie  >^..^<

[hopefulmama]

I just wanted to thank you so much for posting this.  I am at the very beginning of my journey and it means so much to me to know that one year down the road, you have actually seen small improvements and haven't gotten worse. 

I wish you wonderful improvements in the next year and beyond… I know how hard it is to be patient, especially when you're dealing with not feeling your best.  It really is wonderful thought that you are seeing some improvements, even if they are slow.  It's hard for me just to wait to get on the AP 🙂 LOL!  Right now I am in the scared phase where I worry that I will get much worse, and to know that in just one year of embarking on your AP journey you are doing better, it means the world.  Very exciting and I am so happy for you!

I will keep you in my thoughts and prayers every day.  Thank you again and I look forward to hearing your next update.

[Kim]

Connie, you crack me up with your impatience!  This is a great post with significant improvements, so no wonder you're pumped. :blush: Have you talked to your doctor about adding in a second antibiotic, like Zith, along with the Minocin?  That was a great combination for me.

I know what you mean about being less than enthused about getting into a hot sauna when it's so blasted hot outside, but the benefits are just too good. :doh:  Looking forward to your next update.

Take care…..kim

[mkbeeliever]

[user=1441]Conniel7777[/user] wrote:

Yes, just like Veruca Salt from the Willy Wonka movie, “I WANT IT NOOOOWWWW!!!”.

I have always been that way. its a personality flaw. I know this.

Makes being on a slow AP time line a very, VERY hard thing for me to deal with.. I wanted to take Mino for a month and be cured…  HA!!

I really gotta get over it.

This absolutely cracks me up!  I love Veruca!  “I want an Oompa Loompa now!” 😛

I loved reading this update Connie!  You are doing so well!  A year has gone by in a flash – it's so hard to believe!  I wish you 200mg of mino a day and “hurried up” progress in the next coming year!

Cracking me up girl!  :roll-laugh:

Blessings,
Michelle

[sjess]

Hi Connie,

I'm so happy for you! Am celebrating your improvements with you. :roll-laugh::roll-laugh:

Sharon

[redrock]

I love your post and your analogies!

[Conniel7777]

Hopefulmama,

 Thank you so much for your support, and your lovely sentiments. 🙂

I remember how I felt before I started AP.. I was chomping at the bit to get my hands on my first Mino RX.. and when I took that first pill, it was a very dramatic moment for me.. I will never forget it.

Hang in there.. your day is coming. I will keep you in my thoughts and prayers as well!

Your friend,

 

Connie  >^..^<

[Conniel7777]

Kim,

 

 No.. havent talked to Dr. W about adding anything else.. yet. he is on the slow poke train even when it comes to Mino.. I have been on it a year and am still not up to the 200 mg per day dose..

He is more tortoise (sp?) than Hare when it comes to these things.

Not good for an impatient monkey like me!!

Your friend,

Connie  >^..^<

[Conniel7777]

Hi Sharon,

 

 Thanks for the cheers! and I love your picture.. look at that furrbaby there with you.. precious!!

 

Your friend,

 

Connie  >^..^<

[Conniel7777]

Michelle,

 

 Although I dont post much, when I do, I always check for updates on your sweet mama, and I will keep her in my prayers. 🙂

As for Veruca, I think I need to change my avatar picture to hers, because unfortunately we are too much alike!!

Thanks for your good vibes.. keep them coming, and I will bounce them right back to you and the mama!

Your Friend,

Connie  >^..^<

 

[Patti D]

CYSTA Connie,
Way to go!! One year behind you on your road to good health. I noticed my finest improvements in my second year. My person-hood returned to cock-eyed optimist, my ability to look beyond the immediate and past was improved and my “fear” of no recovery was gone.
We are ALL in this together and my thoughts are we are ALL going to get through this TOGETHER as well.
Rock on CYSTA!!!!!
Sending well wishes, prayers for a fabulous year two & complete recovery GF.
I need to post my year almost 3 exam. I am so close to remission I can FEEL the golden egg. I am adding oral low dose clindy to my mix this week and know this will push me over. I can feel it already!
Patti

[Patti D]

OMG
I have been *opps* again.

Too funny!!!!!!!!!
Now I am back to my old name, potty mouth Patti>

PMP

[Trudi]

[user=287]Patti D[/user] wrote:

I am adding oral low dose clindy to my mix this week and know this will push me over. I can feel it already!

Hi Patti–

Good to “see” you.  I am so glad you are doing well.  Did you end up seeing Dr. M in Waukesha–is she the one putting you on the oral clindy?  Just curious :).

Take care,

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?

[JBJBJB]

Connie

Really glad to hear your update!!! I also have very high ESR and it just cannot come down. My puffy sausage fingers are puffier.

Two things I have found: when Dr. C, the LLMD, tested my protein S and C, he found I had a very low free protein S which may cause puffy sausage fingers and salt absorption. I am going to see an hematologist for low free protein S on 26th of this month. I will let you know what she thinks.

I also have very low hormones. So I am on natural hormone replacement such as DHEA and progesterone.

:JB 

 

[Maz]

[user=287]Patti D[/user] wrote:

OMG
I have been *opps* again.

:roll-laugh: Potty-mouthed Patti – she's baaaaaccckkk! :roll-laugh: What a hoot!!!

So great to see you, Patti, and so happy to hear you're doing so well, my friend! Do hope the addition of oral clindy will provide a nice boost to your AP and bring you to the golden finish line.

Peace, Maz

[Author]

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