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Well, it took two months, but I finally made it to my first AP appointment with Dr. S. I had a great visit. He definitely lives up to the hype here on the forum. He seems to be a wonderful, intelligent, compassionate, straightforward doctor. He gave me a prescription for oral minocycline which I will begin soon. Right now I'm taking azithromycin for bronchitis/early stage pneumonia. I see from the posts that some of you actually take that for AP, so I figure it will be a start to my AP treatment.
Dr. S made it clear that he would like me to do the IV treatments there in Ida Grove since I have longstanding lung involvement. He convinced me and I think hubby is okay with it now too. We just have to get me well enough to take care of myself up there for a week. Right now I need help getting dressed and ready. I think, though, that I could do it, I would just have to allow lots of time to do things like that. Getting to the hospital twice a day is all I would have to do, so I think I could do it. Hopefully I will start feeling better after being on the oral mino for a while and that will give me the energy I need to take care of myself. Will have to see how things go.
I met up with kathygirl and we had a short but nice visit (pic pending). It was great to meet someone from RBF. It made me feel like I was meeting a friend. In fact, we drove up to the hospital at exactly the same time, so that made things easy.
I big thank you to all the people on this board for the work they do. I do not believe I would have made it this far with AP if it weren't for this foundation and website. You guys who make this site run are the best! Thanks for your efforts.
Sharon 😀
Sharon,
I'm so happy that things went well for you. You've had so many disappointments over the years I think it was hard for you to hold out hope that things could actually go right. Zithromax is great for the lungs so I'm glad you're on it.
Sharon,
so glad you were finally to make your trip and get the help you need. Just take care of yourself and the small things you can do. The bigger stuff will come later when you feel better.
best wishes, keep it up.
Eva:D
Eva Holloway
awww Sharon…I am new to AP…just started it this week.. so I don't have much about that to say yet… I just want you to know that I believe you are brave and that you are a fighter! I feel bad for you that you need help getting up and dressed….I hate that your condition is such that it is…I love your faith that and positive thinking! I wish you good luck…and I hope we hear good things from you to come! I know you are on the right path now 🙂
Sharon, well done getting to your appt…it must have been a mighty task. I was also pretty bad, like you, in the beginning and I desperately wanted to see Dr S, but they would have had to airlift me, because I was so bad. Great job and so happy your hubby is feeling more comfortable with the whole concept now, too. I understand that Dr S is a gem of a man. Maybe, once you've had your first round of IVs with him, he will help you get further ones set up in your home with a visiting nurse, so you don't have to travel to him and stay in the hotel. That would make like a ton easier for you.
Have you done any research on NAC (N-acetylcysteine) for your lungs? This is a great oral supplement for anyone with lung involvement/fibrosis/interstitial lung disease. It also acts as a precursor to glutathione, which is the body's master detoxifier, made in the liver. So, it is also supposed to be beneficial for its anti-oxidant properties, which are useful during herxing and helping the body to detox the die-off.
http://en.wikipedia.org/wiki/Acetylcysteine
Great news and so glad you're now beginning your road back. We're all here for you!
Peace, Maz
Sharon thanks for checking in and so glad that you had a good response to Dr S. after waiting so long and that you are considering going back there for the IV's. Hope the zith gives your lungs some relief. 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 Sharon,
I am glad you were able to make the trip to see Dr. S. I am glad things went well and hope you start to feel better soon!
Sharon,
I am so happy for you. I hope this is the beginning of your recovery to good health. I hope you will response the medicine well.
Yes, Dr. S is really kind. Please bring him my warmest greetings.
JB
Sharon,
I've been thinking and praying for you! I even started a thread that is titled ATTN: sjess…it's probably on page two or three by now. Go find it as there were a lot of people wondering how you did with your appointment!
I am so glad you finally made it to see Dr. S! I so wish I lived in Iowa so I could go help you while you get your IVs! I am also very glad your husband is on board with it, that is a big deal! I know how you both struggled with the IV thing.
Per Doctor S's recommendation, my mom takes 250 mg. Zithromax on Thursdays BID.
Can't wait to hear how you do when you start your mino!
Blessings,
MichelleSharon–
So happy to hear you had such a positive appointment with Dr. S.
Hopefully I will start feeling better after being on the oral mino for a while and that will give me the energy I need to take care of myself. Will have to see how things go.
I think this will be the case. Keep us posted–again, I was so glad to hear of your report–
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?
Sharon,
Yeah!! I'm so happy that you finally got to your appointment with Dr. S. I remember that trip, and how sick I was when I went there. I think about you all the time, and wish you the best. I'm glad to hear you're starting the mino, and that your husband is warming up to the possibility of getting the clindy iv's.
I hope you start to feel better soon so you can get back to Iowa for your iv's.
Take Care,
Maria
Hey Guys,
Thanks so much for your kind wishes and prayers. I so appreciate them all.
I had to sleep most of today due to the bronchitis. Between the zithromax and the steroid pack I'm feeling pretty well joint-wise, just tired.
Eva: that's good advice to take it slow. I'm looking around at the house and thinking I can do this and that…thanks for the reminder to not overdo it.
Maz: I actually have some of the NAC in my pantry. I was thinking about starting it after I get going on the mino.
Michelle: I missed that thread! So sorry. I'll look that up. Thanks for thinking about me.
JB, I told him you asked me to say Hi. He smiled and asked about you.
I will definitely keep you posted as to how things progress. I'm glad I'm no longer in waiting mode and can actually start! Thanks to you all for your support and encouragement.
Sharon
Sharon,
I'm so glad to hear how well your visit with Dr. S went! Sorry to hear you have bronchitis though.
Take care, rest as much as you need to.
Theresa
Sharon – take a look at Tom's (tbird's) post with some instructions on how you can do this. Lynnie
http://www.rbfbb.org/view_topic.php?id=2791&forum_id=1&highlight=how+to+post+a+picture
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)
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