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Hi Everyone,
Just wanted everyone to know that we made it to Ida Grove and Ryan has had his 2nd treatment! Dr. S is wonderful and I hope we will see him a few more times before we leave. On Friday, Ryan and I leave to drive to Missouri to see Dr. C on Monday morning at 6:00 am. Dan will be flying home tomorrow and then flying to Missouri on Saturday to meet us.
Does anyone know if Ryan will notice any difference in his mobility after this or how long it might take to see any difference? We did not really think of the questions until after Dr. S was gone. Isn't that always the way?
Sue — Ryan's Mom
Hi Sue,
Sorry, I can't answer your question but I'm glad to hear the treatments are going well. Have you seen any corn?
Sue – hopefully you will get to personally ask him these questions before you leave. If not, I know he has been very good with answering questions via email; or perahps you could ask one of the nursing staff to pass along those questions question to him? 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)Hi Sue,
I didn't notice much during the week of IV's, just a little more tired. The herxing came after I got home. There was a young boy (younger than Ryan) that also had SD with a lot of internal involvement and he was visibly better during that week. One of the severe RA patients there the week I was, was in a wheelchair at the beginning of the week and walking on her own by the end of the week. Everyone is different is my point. 😉
Tell Ryan good luck and hang in there because there will be an endpoint to this and he will get his normal life back.
kim
[user=1274]luvmywonderfulkids[/user] wrote:
Just wanted everyone to know that we made it to Ida Grove and Ryan has had his 2nd treatment!
Hi Sue–
Thanks for keeping us up to date. Looks like a lot is happening. Ryan is in my prayers–
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?
Hi Sue,
Just popping by to wish you all the best in your travels…you and Dan are amazing parents!!! You are – metaphorically speaking – going to the ends of the earth for your dear Ryan and so happy you are seeing two of the best! He is one fortunate young man for both reasons. 🙂
Although I haven't had IVs, I've been around here long enough to have heard reports from others and completely agree with Kim….everyone's experience of IVs will be unique. Some immediately see improvements and some will herx…usually on the way home or when getting home. That can be a bit unnerving after receiving such amazing care from Dr. S and his team, but is pretty par for the course. Also, one round of IVs may jumpstart progress or boost it along the way, but usually it's the IV series done at consistent intervals that is most helpful, longterm.
Hope your experience with Dr. C is as good as I understand from others that it will be! Safe travels to you all.
Peace, Maz
Thanks everyone! So far he does not have any pain at all. he is a bit tired but I understand that is to be expected! We meet with Dr. S on Thursday so we are writing down all our questions! The blood work was done today so i am anxious to see what shows up!
Sue — Ryan's Mom
Sue,
I'm so glad that you all made it to see Dr. S. Isn't he wonderful? I am thinking of you and Ryan and pray for the best outcome possible for Ryan's Road Back to good health. Love and hugs to your whole family,
Judy
Judy,
Thank you! I am so hoping that we see a change even if it is small with his hands. Dr. S is absolutely amazing and so is everyone at the hospital!
Sue-so glad you made it there! Finally, right!?! I have been thinking about you and Ryan (and the rest of your family) as I knew his appointment was in June.
Try to have a good time and if you need somewhere else to go-Storm Lake is about a half hour north and it had a movie theater, Walmart, and more food.
I hope Ryan is doing well and I'm keeping him in our thoughts and prayers for the best summer vacation ever as he gets well!
~jen
Elaine,
Thank you so much — I am pretty sure that Ryan's pediatrician will help us do this as well as long as Dr. S will get the order to him!
Jen,
Oh, I am so excited to hear about Storm Lake — I am going to do some research on it right now. We were going to go to the Omaha zoo today but Ryan is too tired so our plan right now is to have 3 treatments tomorrow and and have one really early Friday and leave as soon as that is done and go to the zoo on the way to Missouri to see Dr. C. The logistics of all of this is amazing! lol
Sue
Sue,
I just wanted to wish Ryan luck, and please tell him that he's in my thoughts and prayers. I remember going to see Dr. S like it was yesterday–he's one of many angels in my life, and even though I didn't see “instant” improvement, there's no denying the results I've had from the clindy iv's.
I felt tired and had some herxing by day 2 (heart palps, dizziness) but, really felt better about 2 weeks later. At least you're there in the summer and not the cold winter!! I froze my butt off there in January!:shock: It's definitely an individual thing–since none of us are the same, we all react differently to the treatments. My hope is that Ryan gets better quickly, and is able to see results soon.
Maria
Maria,
Thank you so much. I am really a little scared right now because Ryan is not feeling anything — no changes at all so I am really anxious about tomorrow when we meet with Dr. S. I really was hoping that he at least would have a herx or something to show that it is doing something. He has been on antibiotics for over 1 year and I really was wishing that this was it because of his young age and all. Well, on to Missouri tomorrow!
Sue — Ryan's Mom
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