Greetings From Ida Grove, IA–Only 3 IV's to go!

[amyid]

Hello friends,

I arrived here in Ida Grove, IA on Monday the 7th.  My appointment to meet Dr. S was on Tuesday the 8th.  As has been frequently reported on this BB, Dr. S is an extremely kind, friendly physician.  He listened very carefully to my history and answered all of my questions (I had taken advice and had them written down ahead of time).  I  immediately proceeded to the ER at the hospital across the street to begin the first of 10 IV Clyndimycin treatments and was also scheduled for lab work for Wed. am.  The hospital is extremely clean and modern, the nurses exceptionally kind and the IV treatment room comfy.  I was immediately aware that they do this A LOT and was happy to put my trust in the staff. 

I have had no side effects to the IV antibiotics at this point (I have done 7 of 10), with the exception of a crappy metallic taste in my mouth during and after treatments and slight fatigue/sleepiness after the IV is administered.  (You have to wait a minimum of 6 hours between treatments and I  aim for 10- just to ensure I have as much chance as possible for my intestinal flora to replenish.  I also take my probiotics and eat yogurt daily)  The nurses are very accommodating as to how and where you would like your IV's.  I opted to have butterfly needle IV's as they aren't left in.  Granted that meant a minimum of 10 pokes, but at least I didn't have an IV cath in my arm between treatments, as that is what irritates my veins the most.  The also avoided my hands when I asked, as I flare/herx there the worst and they were happy to oblige.  For others who may have more difficult veins to access, they have different caths they can use to accommodate you.  They are VERY concerned with your wishes, your body/disease type and your comfort level.  I really appreciate their individualized care.

As far as herxing, I didn't notice much after the first treatment  (other than fatigue).  I felt horrible with aches and fatigue after the second treatment Tuesday night.  By the second and third day I had a pattern of feeling great in the am after my first treatment then nausea, hand pain (no swelling) and stiffness, foot pain and significant mental fog and depression (thankfully it only lasted about an hour) about 5 hours after my first treatment.  Then it would pass and I would feel fine the rest of the day.  Then just minimal aches at night.  I asked DR. S and he said it is different for every patient, but he was happy to hear as is seems that a reaction means something is happening in response to the clindy.  It has not been overwhelming or unbearable, however.  (The only unbearable part is missing my kids sooo much)

The town is cute and castle filled as past visitors have described in their posts.  I haven't been staying in the Delux or the Super 8 hotel, as we brought our travel trailer camper with us.  We set up at Cobb park just on the West edge of town.  It is very nice and well kept.  There are water and electric hookups at each site and a very convenient sewer dump site also.  There is plenty of sunny and shady spots. I mention this for those of you heading this way who may have an RV/Trailer and wish to do this also.  We were able to buy groceries at the grocery store about a 1/4 mile away.  So we saved a ton on eating out, etc.  We did eat at the new restaurant the other night.  It used to be Boz Wellz and is now called Charlies.  They grill an amazing filet mignon.  And it was only $17!!!  The cost of the  camp site for a week was only $60!!! It was very quiet and close to everything.  The only down sides are not being able to read the testimonial books that I have heard are in the lobby of the Delux,  there is no laundry-mat in town and there is no wireless internet access at the park (obviously).  You can get online at the Ida Grove library for free.   

For something to do in between IV's you can drive North to Storm Lake and walk around the beautiful lake (drive time about 45 minutes) or go West to Sioux City (drive time 60 minutes) and go to the mall and shop, see a movie or eat (I did all three;)) and also drive to the park by the river for a nice walk.  Ida Grove also has a wonderful walking path and community rec center with indoor pool, hot tub and walking track.  The town feels very safe and friendly.

As far as my continued treatment.  Dr. S reassured me that he will help me stay the course for my road back on AP.  I am very blessed to have found this site and my way to Dr. S early in my disease. 

I want to personally thank everyone on this board who helped calm me down and give me advice, information and hope while I was frantically trying to get started on AP.  You are a great source of hope and compassion. :blush:

I hope to be able to pay it forward it the future to others looking for hope on this BB.  I will continue to keep you all updated on my progress.

Sorry this is long, but for those who haven't gone yet, I wanted to help alleviate some of the unknown.  I have absolutely no regret and no doubt that this is the best decision I can make in treating my RA!

 

Slow and Steady wins the race!

Amy

 

 

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 🙂

[Cheryl F]

[user=439]amyid[/user] wrote:

The only down sides are not being able to read the testimonial books that I have heard are in the lobby of the Delux

Amy,

I enjoyed reading your detailed post.  There was a post asking about Dr. S experiences and here you come with a “real time” answer.

Regarding the notebook at the Delux, why not go into the lobby and read through the book.  I am sure they wouldn't mind.  There was a patient who was there last July that stayed in her motorhome and she went and read the books at the Delux.   That would be sooooo cool, I am sure that you might see some familiar names. 

Enjoy the remainder of your stay.

Cheryl

[Maz]

Amy, how wonderful to hear from you “on the road” as it were and to hear all the details of your Ida grove experience. Thank you so much for taking the time to do this…it will help so many others looking for insight and hope. You're a real treasure!

All the best with the remainder of your treatments and have a safe drive home with your travel trailer/camper and looking forward to further updates as you're able.

Thanks and God Bless!

Peace, Maz

[magsmc]

Thank you for your post Amy.  It is reassuring, as I will be in your shoes soon, and alone during the process, which makes me nervous.  It is nice to hear the details of your experience.  I hope you have success with your treatment!

[Kim]

Hi Amy, so glad things are going well in Ida Grove.  I know the Delux would not mind you coming by to read the notebooks.  The woman/manager is a patient of Dr. S.'s and welcomes all his patients.

kim

[Eggs]

Thanks for posting this. My appt got bumped up to next week and i was a little apprehensive. this post helped put me at ease, its good to know the nurses are so kind and listen to your needs. all the best.

-eggs

[JBJBJB]

So glad you made it. Your wonderful post brought me back to that cute little town again. By the way, I know how you feel about missing your children. I also left my two kids with our friends. It was very hard. They had a great time. Hope you do not have a lot of pain and safe trip home. Please keep us posted.

 

[lynnie_sydney]

Amy – just to join in the good wishes and support. So glad it has all gone so well for you and thank you for posting the kind of detail that gives so much comfort to others about to embark on this road. 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)

[katieb]

Hi Amy

Many many thanks for this interesting and inspiring post. It is great to hear that you have found the great AP doctor so early in your disease, and I hope it continues to go smoothly and painlessly for you !

I am at a similar stage with my treatment, having just started an the mino in June, although trying to work out the dosage for myself. So if you could post details of how your treatment goes, from time to time, it would be really useful to compare notes.

It gives me a great deal of confidence in the efficacy of the AP. It is sometimes difficult to keep believing in it in the middle of a big herx.

I have just had a long telephone 'chat' with an old family friend who happens to be a rheumatologist. The upshot was she agreed that as I'd started the mino already I should continue, but 'not for too long if it's not doing any good – no more than a month'. I didn't like to disillusion her as she is a really sweet kind person ! So these are the sort of things which make me waver a bit, but your story has made me determined to stick it out whatever !

Just one question. Do you know what is the purpose of the IV clindamycin ? Is it to clear any other infections from the body before starting on the mino, or something else entirely ?

Thanks again, and enjoy the rest of your trip !

Katie

[Goodwife]

Thanks for posting your experience – sounds like so far so good.  Good luck and looking forward to hearing all of your improvements!!!

Goodwife

[lynnie_sydney]

The upshot was she agreed that as I'd started the mino already I should continue, but 'not for too long if it's not doing any good – no more than a month'.

Katie – I know you know this. But never hurts to remind people esp when they have been talking to conventionals docs. All the literature (the book and info on main page of this site) underlines the fact that improvements on these protocols are very gradual. And that it is unlikely that improvments are seen in under 6 to 12 months. As John McDonald likes to say, improvements are often glacial and can go unnoticed at the time they are happening. Not easy when you are herxing I know. It sometimes helps during this time to re-read the info and the success stories. Keep the faith! 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)

[katieb]

Hi Lynnie,

I surely am going to keep the faith, with the help of all you fantastic roadbackers. It's especially helpful to find people like Amy who are at a similar stage, but working with a really good AP doctor.

There is way too much evidence here to be ignored, and I truly believe that it works, and am determined to stick it out through the ups and downs, good days and bad days, because even if it takes more than 2 years, I will still only be 57, with plenty more years of active life to enjoy. It's worth the wait.

Thanks everyone 😛

Katie

[Author]

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