Trying AP

[jeanann]

I have started treatment with Dr S in Iowa.I have diffuse SD and very scared and nervous. I know Michelle on this site and she has been very encouraging. Has anyone had renal crisis and success with antibiotic therapy?

This post has been moved to the General Discussion area of the Forum where others can respond from Personal History and Progress area which is for authors’ journal notes and cannot generate replies from others. RBFV

[Lynne G.SD]

Hi Jeanann
I also have SD but never had severe internal problems and thank God every day that I found AP before things got very bad.Today I am just about normal in every sense of the word.How severe is your kidney situation?For me the best antibiotics are minocin and zithromax which helped a lot more than clindamycin.
Lynne

[jeanann]

Hi Lynne- Thanks for responding, I am on dialysis. I had severe renal crisis the end of March 2010, I am told they can come back up to 24 months but nephrologist is not optomistic. My rheumotologist is very optomistic. I am on Moncyclne 2 times per day and I just started , my doctor is not a fan. I was referred to an MD in Iowa. What do you think of IV treament? I was really hoping to meet someone on the site who had some experience with renal crisis.

[lynnie_sydney]

Hi jeanann and welcome to Road Back though sorry to hear of your renal crisis. I’m not surprised that you are nervous and worried. Those who know Dr S have called him a ‘prince of a man’ so knowing that you are in such good and caring hands must be giving you some comfort .
If you go to the front page of the General Discussion and type ‘renal crisis’ into the search box at the top of the list of topics, lots of past discussion on this subject will come up and you can have a look through those posts. If there is anyone you’d like to contact after searching, you can do this via a PM (Private Message). Just click on where it says ‘0 new messages’ above left, then write a message to the person you want to contact, using their Forum name (e.g. lynnie_sydney is mine, so you’d type that and then click ‘add’). When you’ve finished your message, click on ‘submit’ as you did with your post. The PM will stay in your outbox until the person you’ve sent it to picks it up and reads it. Hope this helps. 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)

[vonni]

Jean Ann,

Welcome!!

[Joe RA]

Hi: Jeanann
Nothing to worry about , everything will be OK,
Best to you ….Joe RA….

[jeanann]

Thanks Joe.

[Maz]

@jeanann wrote:

I have started treatment with Dr S in Iowa.I have diffuse SD and very scared and nervous. I know Michelle on this site and she has been very encouraging. Has anyone had renal crisis and success with antibiotic therapy?

Hi Jeanann,

Lynnie is right – by all accounts, you will be in the best of hands with Dr. S. who has seen pretty much everything in his long tenure as an AP doc to countless scleroderma and other rheumatic patients. This is a slow therapy so hang in there…I loved JoeRA’s post to you…he basically said it all. 🙂 AP works and it works well for SD patients…it just needs a lot of patience and stick-to-it-iveness to hang in there and keep working at it and everything you can do to support the therapy with diet, detoxing and any additional meds you may need to support the therapy along the way. Are you taking a good quality probiotic?

I have heard others here posting that Dr. S has dealt with renal crisis in other SD patients and he has been uplifting and positive about turning this around in spite of the gloom and doom surrounding this issue. Minocycline has some very nice renal protective properties…. and presumably you’re taking an ACE inhibitor to help protect your kidneys, as well?

Michelle is a wonderful person to be in contact with for support…she’s advocated for her Mom throughout it all and has let us know here that her Mom’s kidneys have been improving with abx therapy, so you have a great role model in Michelle’s Mom that it can be done. She also later found that her Mom had Lyme disease, as a good number of other SDers have discovered here, but this is something you could check into later when you’ve started to improve a bit more. Right now, the heavier abx protocols needed for Lyme and coinfections might be way to much for your kidneys to handle anyway.

If you would like to add a signature line to your posts, Jeanann, to include your diagnosis, disease duration, meds, supps, etc, it’s easy to do and could save you time explaining every time you post. Just go to the Control Panel button up top, then click on the Profile tab and select, “edit signature.” You can change this info any time you want, but it will appear each time you post, so you don’t have to keep adding this info. 🙂

You’ve got new friends here, so post away whenever you want. You’re on your road back now – YAY! 😀

[jeanann]

Thanks Maz- I will try to work with the site more over the next few days, very inept.

Thanks for the probiotic tip. Do you have one you would recommend?

I was concerned about even starting antibiotics because in the Schammel (sp)book patients with renal issues were dropped from the testing, but that may have been because of the controls necessary for the study. I was uncertain, Dr S did not seem to think it would be a problem. I am still on cupremine and Dr S advised to continue taking that as well. So, I guess I will just see how my labs look next month. But I am just very nervous….so hoping this works! Let me know on the probiotic, Dr S did not mention a probiotic, but I was going to go to GNC today. Jean

[Maz]

@jeanann wrote:

Thanks for the probiotic tip. Do you have one you would recommend?

I was concerned about even starting antibiotics because in the Schammel (sp)book patients with renal issues were dropped from the testing, but that may have been because of the controls necessary for the study. I was uncertain, Dr S did not seem to think it would be a problem. I am still on cupremine and Dr S advised to continue taking that as well. So, I guess I will just see how my labs look next month. But I am just very nervous….so hoping this works! Let me know on the probiotic, Dr S did not mention a probiotic, but I was going to go to GNC today. Jean

Hi Jean,

Below, I’ve pasted part of a “patient packet” with info on probiotics that just came to me from a Lyme Literate MD on why probiotics are necessary while on longterm abx. He includes his recommendations for dosing (bearing in mind Lyme therapy tends to use higher doses of abx and dosing is quite individual in this context). I have actually used PB8 vegetarian caps very effectively for 4.5 years while on heavy Lyme protocols and I occasionally add in a second probiotic to mix things up. PB8 has been really affordable and I buy it in bulk from http://www.vitacost.com, taking 8 – 10 caps a day (to bowel tolerance)…but everyone has their favorite brand and some AP docs will prescribe their preferred brands. Ultimately, what works for one person may not work for another, as gut microbiota is very unique across the board for everyone.

In the following write-up, this doctor offers info on the brands he likes his patients to use.

– Antibiotics destroy

[jeanann]

Thanks for all the info and yes I am also on an ace inhibitor .

[mlouise]

I have diffuse SD with heart, lung and liver involvment. No Kidney involvment. I have seen great improvement, especially in the lung and liver. I think my liver was improved by diet and especially detox. Being on dialysis will make things more difficult for you, but like Maz said, APBeliever, (Michelle) is a great person to talk to. Lat summer when I thought I was dying she was extremely supportive and it was reassuring knowing that someone else had tread this path before. Another person who gave me great advice was Richie. Look for these two people.
I know that if you stick with it and especially don’t let the dead stuff collect in your organs, you will see results. i have never used an ACE inhibitor. I used to worry about kidney and liver, but I would just ask the folks on the forum about any questions I might have and they always were very reassuring. mlouise

[jeanann]

Thank you. I have communicated with Michelle and I will look for Ritchie

[A Friend]

@jeanann wrote:

Thanks Maz- I will try to work with the site more over the next few days, very inept.

Thanks for the probiotic tip. Do you have one you would recommend?

I was concerned about even starting antibiotics because in the Schammel (sp)book patients with renal issues were dropped from the testing, but that may have been because of the controls necessary for the study. I was uncertain, Dr S did not seem to think it would be a problem. I am still on cupremine and Dr S advised to continue taking that as well. So, I guess I will just see how my labs look next month. But I am just very nervous….so hoping this works! Let me know on the probiotic, Dr S did not mention a probiotic, but I was going to go to GNC today. Jean

Hello Jeanann,

I’m so glad you found this site. Road Back was operating out of an office when I first read the book and learned about AP. Everyone here will certainly help you any way we can. Dr. S was my first AP physician (for about 3 years), and was highly recommended by a newly adopted “mentor & friend” from Road Back … she still remains so after quite a few years. Things really began turning around for me after about 4 months. Fortunately, a new local physician embraced Dr. Brown’s treatment protocols, and we no longer made those long trips.

I want to mention that though Dr. S was an excellent AP physician, I don’t believe he ever mentioned any kind of supplement to me. However, I’d had several years of chronic illness and had already had to learn about probiotics and other supplements needed. It can be very harmful for most patients, I learned the hard way, if probiotics are not taken to replace our gut flora. Some abstracts sent to me by Dr. William Crook (who wrote 14 books on the subject) back about 1993, showed that patients can vary as to the degree of susceptibility to developing yeast/fungal overgrowth when taking antibiotics. The vast majority need to pay attention to replacing gut flora with probiotics, and “how/when” to take them and “which one/how many” regarding this.

Also, I encourage you, especially as you begin feeling better, to try to read/learn about supporting your body (giving it what it needs, and not consuming/doing what it does not need). If some posts seem important to you, they may be printed by clicking on File on the top-left tool bar and printing — or copying/pasting into your PC.

Get better soon!

[Author]

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