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Hello to all my RBF BBoard Friends:
I have an update on Jessica that I would like to share. I am posting the full story, sorry for those of you who have read it 100 times, but for the newcomers, it seems like you need to tell the story for the ending to make any sense.
Jess was diagnosed with Limited Systemic Scleroderma (aka CREST) in May 2006, she was 16 years old. Her symptoms included extreme fatigue, swollen and contracted fingers, severe Raynaud's, with painful digital ulcers that would not heal for up to six months, and shortness of breath which was diagnosed as SD lung involvment by her first pulmonary funtion test which showed decrease lung diffusion capasity (DLCO) at 61%. To sum it up, she was not doing well, sleeping all day, too tired to eat, too much pain to put her clothes on un-aided. She couldn't button her jeans, put on tennis shoes, or type on the computer.
In July 2006, Jess started AP therapy. Within a very short time, we knew she was getting better. She returned to her sport of competitve swimming in the fall and resumed competition.
We knew she was well, but she had not had another PFT since 10/2006, which showed some improvement, but not back to normal.
We received the results of a PFT she had a couple weeks ago and everything is back to completely normal. Infact many of the items are above 100% of expected, which is actually to be expected for an athlete.
This Sunday, I will drive her back to college for her second year. She is completely well now and we are even starting to adjust her use of the AP to maintain this remission long term without the full dose or full time use of the antibiotics.
I will ask Jess to update her testimonial, but for now, I just wanted to share this with our internet family, that reminds me, I haven't even told Jess' father this good news yet, Opps!
Cheryl
[user=2]Cheryl F[/user] wrote:
This Sunday, I will drive her back to college for her second year. She is completely well now and we are even starting to adjust her use of the AP to maintain this remission long term without the full dose or full time use of the antibiotics.
Cheryl,
This is so very encouraging. We need to vote and put you on Operah show!!!
So happy for you and your family!!!
JB
Thanks for posting your story, Cheryl.
I was interested when I noticed your signature and the fact that your daughter was diagnosed with SD so young and wondered how she was doing. I'm so happy to hear she's doing well and back to normal life. It's amazing, really!
She (and you) must be thrilled and I'm thrilled for you.
:D:D:D:D:D It's great to read happy posts like this.:D:D:D:D:D
TOO GOOD!!!!!!!!!!
Congratulations to you both. Jess couldn't have had a better partner to help her get those results. Should we be looking for her at the next olympics?
kim
Wonderful news Cheryl! Also sounds like her young athlete's body is working in her favour. You must both be over the moon.:D:D:D:D 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)Cheryl, Jess & family,
YEA!!!! What wonderful news. Thank you for sharing it. :roll-laugh:
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 🙂
I'm so happy for you and your daughter. Her story is such a bright light for everyone! Bless you both!
BIG and heartfelt congratulations to Jess, and to you, Cheryl. Detailing the journey you two have taken has been very helpful to me, and to others, I'm sure.
I'm thrilled for you guys!!
Cheryl,
So happy for Jess and your family!!! Great news and truly inspirational, as quite a few people on the board question whether AP can improve lung function. GREAT, GREAT, news!!!!! Also, amazing that you are looking to reduce her dosage – wonderful:roll-laugh:
Lauren
[user=40]Kim[/user] wrote:
Should we be looking for her at the next olympics?
No, that ship had most likely sailed before the SD diagnosis. Prior to becoming ill, it was likely that she would have qualified for Olympic Trials, but highly unlikely that she would have made the team, who knows! But now she is happy to be competing at the NCAA level, hoping to make Nationals next spring.
She has had alot of hurdles, first SD, then, just as she was recovering, she was at a big meet in Seattle, and one night after finals, slipped and fell and broke her elbow, needed surgery. Six months later (10 weeks before she was scheduled to leave for college) we were told that the bone did not heal (nothing to do with SD, everything to do with medical malpractice), so she had to have the surgery redone during spring break this year. Last swim season, she trained (swimming and weights) with an arm that was held together with loose screws (no I am not kidding). So now Humpty Dumpty is put back together and we will see what she can do now that she is in one piece.
HOWEVER, her swimming days may be tapering as she is starting to realize what she gives up to swim 25+ hours a week. She is applying for internships at UCSD, Scripps Biological Research, and The Salk Institute, so soon there will be a choice to make. She has her eyes on a summer internship in Paris at the Pasture Institute (that would be a real stretch, but hey a girl can dream).
So, again, NO, don't be looking for her in London in 2012, by then her goals will be getting through graduate school.
Cheryl
Cheryl, this is so good!! I'm rejoicing for you. How validating this is for everyone trying to hang in with AP.
Jess will be a great graduate student when she gets there, wise beyond her years. Best of luck!!
VERY GOOD NEWS! 😀 I am so happy that Jess is heading down the remission road.
I am serious Cheryl that Jess' story gets written up as a medical case and gets submitted somewhere – the improvements in such a relatively short time should make some docs THINK about the connection between bacteria – immune disorders. I wish I could take it on but my new job is keeping me busy.
Thanks for sharing. I will post my testimonial next month.
Best,
Susan
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