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Hi everyone,
It seemed like an age waiting for my son's AP appt but last week we got to see DR. H. He is a very gentle man and made us feel at ease straight away which was wonderful.
He said that he was going to start my son on just 50mg of Doxy M,W,F for one month and gradually increase it to 100mg M,W,F for a few months and again increase the Doxy depending on what is going on.
Dr. H wanted to reduce the likelyhood of herxing as he felt my son was in enough pain as it was. I am relieved he is going low and slow as a good friend said!
The long and short of it is that we are now starting AP!! I feel more worried now than ever waiting for something to happen! Of course I know it could take up to 6 months before we see anything but God it would be nice if it happened sooner!
I may not post often but I do read all of your posts all the time and you are all an inspiration to me. 🙂 Thanks.
I will keep updating and hope it will all be good news!!!
Caroline.
Caroline – thanks for posting your news. So glad you felt safe and supported by Dr H – that makes such a difference. All the very best to you and your son on his new road. Keep us posted of his progress. 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 Caroline,
We're all rooting for you and your son. May you have minimal herxing and maximum results! 🙂
Smart doc to start low and slow. 😉
Take care…..kim
Caroline,
Congratulations on a good visit with your AP doctor–it must be a big relief to have someone that is supportive of your treatment choice for your son. Please do keep us updated on his progress. I wish you the best of luck, and hope that by going slow, he will avoid any heavy herxing.
Maria
[user=40]Kim[/user] wrote:
May you have minimal herxing and maximum results! 🙂
Hi Caroline–
Kim has such a good way with words. I totally agree with her!! It's been a long haul for you and your son, but the turnaround has begun!!
Love your avatar :)!
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?
Hi everyone,
thanks for your posts and all your support! It just feels such a relief to have started a new journey. One hopefully of recovery. 😀
Trudi, Couldn't not have the avatar it is so me!! :roll-laugh:
Caroline.
Sharon,
thanks for your good wishes.
I have followed your posts and you truly are a inspiration. Keep up the good fight.
Caroline.
Thanks m.
It really helps to hear all the success stories! No change as yet but the he has only taken 4 tabs so far!
Who's counting!:D
Caroline.
motherbear – if he is going to herx then it often doesnt kick in till about the 2 week mark, sometimes later, everyone is different. And noticeable changes usually take some months. It's a slow road to wellness. 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 Lynnie,
thanks for the info. I was hoping that at 50mg for the first month he isn't going to herx but you never know. Oddly enough I was thinking about when a herx would first apppear yesterday and there you are today with the answer!
In a way I hope we see something so we know that it is working. He is in so much pain all the time that I don't even know if we would notice him herxing. I will try to be patience itself :).
Take care
Caroline.
I was in pain all the time, too. A couple months into therapy, I had sudden worsening, and I raised my dose. When I began to see improvements, it was very subtle. For example, there would be an hour or two, short windows, where I'd feel less burning pain.
Those windows grew larger, and eventually I'd have days where I'd forget about the arthritis.
It was not, however, a linear progression. Two steps forward and one back.
I found it helpful to look back months, and make a mental note that certain things did not bother me as much. With such gradual improvement, it may not be as easy to notice the changes.
I think a big contribution to my healing was diet change. I dumped the gluten, and eventually the GF products such as GF bread, GF waffles, and GF pasta. Then, I dropped the sugar. A treat is now a small square of dark chocolate. I've begun cooking a whole lot more, and focusing on nutrient dense foods ala Weston A. Price Foundation.
We're hiding liver in chili, and meatballs. Making rich bone broths. Getting eggs & meat directly from the farm. Drinking heavy whipping cream and eating butter from grass fed animals.
I feel certain that my poor diet, SAD, contributed to my disease, and my high intake of refined carbs & sugar took it's toll.
For the first time in years, I fell “well fed”.
Good luck!
Hi m.
It was very helpful to hear your journey and how things changed slowly but surely. When I hear of someone doing so well it lifts up my heart. I am over the moon that your life has turned around, we all know everyone on this forum who has responded well have had their lives given back to them.
The trouble I have with diet is that he is 18 now and even though he has grown up on home cooked foods full of nutrition his disease has taken away his appetite.
He eats too much sugar now and I have to force him to finish his meals which doesn't always work!. He has no interest in food and won't entertain any special diet as he is so low mentally. If I left him for the day he wouldn't eat a thing.
I wish he were younger then I could put my foot down. One of the things I want to happen is that as the pain reduces his appetite comes back. He has lost so much weight and even with special shakes it doesn't go up.
On the up side for the first time ever he is talking about the future and university. This will only happen if the AP works of course. It all hangs on this therapy which is very frightening.
Take care m.
Caroline.
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