From Gay an Update

[GayG]

I am so sorry that it has been SO long since I've visited and posted……life has taken off in the past year and I have dropped the ball and have no good excuses. 

I got remarried this past February 14th to a wonderful, wonderful man.  when I get a chance I will post the pictures and send the link.  Some of you may remember that my x-husband moved next door to take care of me when I was so very sick (we have a son together and I couldn't manage to hardly get out of bed at the time much less take care of anything else, most days I needed help dressing)….anyway he moved back to where he was since my remission and has a new girlfriend and they may be getting married soon!  I am doing wonderfully, I work out still (one to two miles walking daily) and can do anything I want (most days I forget that I have SD)……..I hope that anyone who has their doubts that AP works can read this and have hope that it does.  Below is a cut/paste of an email reply that I sent today to someone asking about what AP dr. I use:

Good afternoon!…Currently I am using Dr. Maureen M. in the Division of Rheumatology at University of Texas Professional Building/Rheumatology Clinic in Houston, TX.  It was my understanding that she has devoted her practice to researching the condition of SD and knows a lot about it and a lot of people from all over go to her………the only thing is she doesn't actually beleive that antibiotics work and she keeps referring to the study that she did to prove that.  Her study has been looked at by others (Bill Hubregs knows who it was that reviewed her study, I can't remember who it was right now)…but anyway it was the determination of this review that the study was flawed and are hoping that at some point she, or someone else will repeat the study and do it correctly.  

When I went to see her in April of this year, I asked if she would prescribe Minocin for me since I have to go see her and Dr. F (My cardiologist) anyway every 6 mos. and she said yes.  I was very surprised that she agreed and was pretty happy about it since I could then see fewer doctors in my hometown and just use the two of them since I have to make the trip anyway. So now they both handle my care.  Dr. F. is on the same floor as her and has learned a lot about SD from her (which is what I needed and couldn't find in my hometown)….since I have to be on Lisinopril and Cardia to control my blood pressure and heart rate I felt that finding a good cardiologist was important.

The type of SD that I have causes renal failure and rapidly advancing skin involvement (at least that's what the student rheumatologist said that was with Dr. M. the last time I went to see her just a few weeks ago.  That is exactly how mine played out…..I went into renal crisis, my blood pressure shot up, I went into congestive heart failure and the skin involvement was head to toe and caused a LOT of very excruciating pain.   I do still  have Rheynauds and take Nexium for reflux but those things are VERY minor compared to how sick I was, I can live with these two symptoms especially since they aren't that bothersome.

This last visit a few weeks ago Dr. M. wanted to know if I would agree to cutting my Minocin dose in half and that I would need to eventually get off of Minocin entirely.  This is because she was concerned about drug induced Lupus.  It's my understanding that condition is very rare and I'm not going to agree to cutting down my dose until I am in complete, 100% remission and then only after I have researched to find out if there is any danger to doing so…..I also will not ever get off of Minocin unless I do start having these lupus symptoms…..I am doing too well to risk it….I may switch to a different antibiotic, I've been told there are others that work that do not have that issue so I am currently information gathering and will take that back to her when I see her again in 6 months.  I am doing very, very well and I don't want to take this risk…I know for a fact that I would never have gotten better if it hadn't been for AP therapy and the wonferful care and advice I got from this website (my recovery happened just like I was told it would and in the time frame that I was told it would happen)…..I would start to see subtle changes around 6 months and then slowy improve from there and that is what happened exactly.  AND I recently got re-married this past February!

Early in my illness I did get 10 days of IV Clyndamycin therapy from dr. K in Lufkin, TX…..I was desperate and wanted to move things along quickly.  I herxed and it caused a lot more pain about 2 days into it but I didn't care…that just told me it was working.  I would recommned Dr. K. in Lufkin, TX HIGHLY!

If Dr. M. in Houston at some point starts refusing to prescribe AP for me I can always go elsewhere, Dr. K. in Lufkin is one choice and there are others in my area that prescribe it. 

I have been on AP therapy now for 2 years this past July and I have come a very, very long way since I was so sick.  When I was at my sickest I had to have help and couldn't do much for myself due to the stiffness and pain, even dressing was very hard……Waking up in the morning was horrible because if I didn't go slow I would try to pass out…just walking to the kitchen to make coffee was a difficult task….I would lay down before I would pass out and then get up and go again slowly….mornings were the most difficult time of the day and I felt the sickest in the morning.  I remember it was the HUGEST deal to be able to squat down and get back up by myself, lift my leg and wash the bottom of my feet, peel a potatoe, turn around when driving and see for myself if I could change lanes w/o someone else having to do that for me, get up from a sitting position w/o asking for someone to pull me up…that list goes on and on from what I couldn't do before that I can do now that you don't even think about until you lose the ability to do it.

The worst of it is over…..I work out (I can do that now w/o my heart rate getting too high), I try to have a better diet, I take a multi-vitamin each day and fish oil as my only supplements (I highly recommend fish oil)…..I improve more and  more all the time….I have very little skin involvement left anywhere (small amt on my legs and some on my lower arms and hands) but it gets better all of the time as well and doesn't prevent me from doing anything just as I always did before I got sick (when I visited Dr. M a few weeks back I heard that student doctor mention to Dr. M. that my skin score was 29 at my last visit 6 months ago and now it's a 20?,,I just heard him mention that so I think that's what he was referring to, I didn't ask, it sounded good and that was all I wanted to know)…..I feel great and most days I even forget there's anything wrong…..I have no limitations to any activities………….Hope this was helpful, let me know if you need Dr. K's number…..Gay

 

 

 

 

 

 

 

[Lynne G.SD]

FANTASTIQUE,FORMIDABLE!!! I am sooooo happy for you as I know how sick you were.Congratulations on your wedding.I hope you will have all the happyness you deserve.
               Lynne

P.S.   I told you so.  hehehe

[Maz]

[user=22]GayG[/user] wrote:

This last visit a few weeks ago Dr. M. wanted to know if I would agree to cutting my Minocin dose in half and that I would need to eventually get off of Minocin entirely.  This is because she was concerned about drug induced Lupus.  It's my understanding that condition is very rare and I'm not going to agree to cutting down my dose until I am in complete, 100% remission and then only after I have researched to find out if there is any danger to doing so…..I also will not ever get off of Minocin unless I do start having these lupus symptoms…..I am doing too well to risk it….I may switch to a different antibiotic, I've been told there are others that work that do not have that issue so I am currently information gathering and will take that back to her when I see her again in 6 months.  

Hi Gay!

How lovely to see you here again and to hear your fantastic/fantastique news!!!

If this helps, there are some very simple labs that can be run at intervals to check for drug-induced lupus and there is no need to come off Mino unless these labs start to reflect a problem. As you said, DILE (drug-induced lupus erythematosis) is extremely rare and more to do with how an individual metabolizes minocycline. It's a very sweeping generalization to assume that every single person who stays on it for longer than a year or two is going to get it…that just isn't true. 😉 There are folk who have been on it for decades with no problems.

If you click on my Progress Thread in the link under my signature you will find all the labs I had run to check for DILE. If your doc is concerned, just tell her you'd like to have these labs run at 6 monthly intervals. Perhaps this will calm her concerns?

Congrats on your new marriage, Gay, and may share many years of wedded bliss together!!!

Peace, Maz 

[Lynne G.SD]

Oh,Gay….I forgot to tell you that since I am in remission I only take 100mg mino every second or third day.Now and then I add one cap. of zith.I know I am not cured as the SD tries to make a comeback when I am super tired and I feel my hands starting to cramp.Just  that small dose keeps things running just fine.I have not taken any meds of any kind for over 4 years,well maybe an asperin now and then for a headache.
                         Lynne

[jims]

Gay,Thank you so much for your post. I have suffered from PSA for over two years, and have made improvements under AP. I read your post and I have had every symptom you listed. Now, thanks to AP the roadback and DR. S. I am improving daily. Today I walked two miles, just a few months ago ago I couldn't hardly stand up and had to use chairs and the walls to get around. I still have some swelling, but I have NO DOUBT that AP works, if one can just endure. I am now pouring my energy into LDN, (Low Dose Naltrexone) as an adjunct therapy to AP. I have an appointment with an integrative MD in Savannah, GA Tuesday for the possibility. It doesn't work for everyone, but I hope it works for me. I have read that bacteria and fungal issues are keeping some from responding to LDN. I will keep everyone posted, thanks to all who post here. Jims:)

[mkbeeliever]

This is awesome!  Thank you for posting!  I can not wait to read this to my mother!  Congratulations on your marriage!

Blessings,
Michelle

[mikana]

Hi Gay, it's me, Lana. Mike and I have missed you since we have missed the last couple of meetings. You are such an inspiration to him. We discuss your improvements all the time. When he starts getting a bit down, I always remind him of your journey.

Oh yeah, I bought him some of that “power putty”.

See you at the meeting, Lana

[GayG]

Hey!….Jordan and I have missed seeing you all…..it's been several months since we have been able to be at the support group meeting because of going to see family in Louisiana and then we were on vacation for a week and then about a month ago my Mom had a major stroke….we brought her home Saturday (she's going to live with my sister who is very close by)…….we are praying that everything stays settled down enough to attend the support group meeting in November!…AND we are determined to make it to their Christmas party this year…..hope to see you soon and tell Mike to hang in there…and isn't that hand putty great!

[GayG]

Thank you! and I hope your mother gets better soon…it takes patience but it's worth it…..

[GayG]

Thank you Lynne, Maz and everyone that replied….i've taken notes from the information you gave and added it to the documentation I'm gathering for Dr. M. when I go back in April……….I think the idea of cutting down like Lynn did and taking zith also may not be a bad idea and maybe one that Dr. M. will agree to…..BUT I don't want to do that until I am in what I consider to be 100% remission, which means no skin involvement at all….when all of that is gone then I would feel safe at tapering the dose some but I don't think I will ever be brave enough to get off of it entirely unless I started having problems of some sort…..Like Bill said “if it aint broke don't fix it”….if she refuses to continue to prescribe the medication then I'll get it someplace else……Thank you all very much for your replies!…I'll let you know what Dr. M. has to say after my next visit…..Love, Gay

[lynnie_sydney]

Chiming in a bit late here. Congratulations Gay, I remember when you announced your upcoming marriage! So good to hear from you and thank you for the great update. I wish you many years of health and happiness.  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)

[Conniel7777]

Hello,

 

 I wanted to say:

 

1) I am THRILLED to read about how well you are doing… may you continue to keep on improving and living such a wonderful life!

2) Thank you so much for taking the time to post these details about your recovery… for those of us out here who are early on in our journey down the “road back” we need to read about successes such as yours; it gives us all so much to look forward to, and much reinforcement of the fact that we are definitely on the right path.

Again, such a wonderful story to read…  continued best of everything to you! God Bless!!!!

 

Connie

[Kim]

Hi Gay,

So thoughtful of you to post an update, and a fine update at that.  Sounds like you're not even doing the forward/back dance anymore, but that it's just full steam ahead now.  There are some new SD people on the board that will be very encouraged by your post, so thanks for paying it forward.

I am truly happy for you. :blush:

Take care…….kim

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