Giving hope to an "impatient" patient

[RISHARISA]

A family member who has diffuse scleroderma started AP this past July. He received 5 days of IV clindamycin from Dr. S. in Iowa, and is currently on twice daily 100 mg Minocycline. Fortunately, our local family physician is on board and is providing a once monthly IV “boost ” as well.
The patient does not see any real improvement and is becoming discouraged and impatient (especially since the medication is causing ongoing stomach upset).
I would greatly appreciate hearing from anyone whose inital experience was similar– but went on to see real improvement and progress. It would provide a ray of hope to someone who could really use it. Thanks

[Parisa]

Risharisa,

AP can definitely bring someone back to health from scleroderma but unfortunately many times it’s a loooong road back. Many patients do not see much improvement in the first six months and I believe many of the scleroderma patients have an initial worsening in the skin. I have been on this board for about six years now and have seen many “miracles.” Tell your relative to hang on and hopefully some gradual improvements will be starting in the near future.

Below is a link to the testimonial page for some added encouragment.
https://www.roadback.org/index.cfm/fuseaction/community.sub/subgroup_id/6.html

[Maz]

@RISHARISA wrote:

A family member who has diffuse scleroderma started AP this past July. He received 5 days of IV clindamycin from Dr. S. in Iowa, and is currently on twice daily 100 mg Minocycline. Fortunately, our local family physician is on board and is providing a once monthly IV “boost ” as well.
The patient does not see any real improvement and is becoming discouraged and impatient (especially since the medication is causing ongoing stomach upset).
I would greatly appreciate hearing from anyone whose inital experience was similar– but went on to see real improvement and progress. It would provide a ray of hope to someone who could really use it. Thanks

Risharisa, a warm welcome to you! How great you are here and posting in support of your relative. 🙂

Parisa is right on when she says that this therapy isn’t an overnight sensation. Three to four months in is still very, very early days to see any kind of improvements. SD is often described as a bit of a freight train and the goal in the first year is to slow down that train, primarily, to bring progression to a halt. Timing varies for everyone in this regard, as each person’s situation is unique (disease severity, age, disease duration, strength of immune function, coinfections, etc), but once the freight trained has come to a halt, reversal can then slowly begin. Sometimes protocols also need to be tweaked, with additional abx added. Quite a few SD patients here have discovered later that they had Lyme disease, for instance, and tick bites can come with a number of coinfections that need to be addressed separately.

Can you share with us the duration of your relative’s SD? Have they been on other drugs for their SD prior to starting AP and since starting it?

Also, what type of stomach upset is your relative experiencing? Is she/he finding it is related to the minocycline doses? What type of upset? Reflux? Stomach pain? Swallowing? If reflux, this may be due to the disease itself and inadequacy of the upper stomach sphincter (and sometimes,too, the lower stomach sphincter due to slowed stomach emptying). GAVE is another problem that can sometimes occur with SD.

There is a new volunteer here, GayG, and her story is quite remarkable and I think she could probably share some hope and inspiration for your relative. Her first year was pretty difficult while waiting for AP to kick in, but she is now leading a pretty normal life with all of her worst symptoms reversed. If Gay doesn’t see this thread, please do send her a private message (user name: GayG).

There are a number of SDers here, too, who can share how they managed to control their stomach issues in the early days, some using PPIs and some alternative methods.

Some final thoughts, is your relative taking sufficient daily probiotics? Noticed any food sensitivities, such as gluten intolerance?

In the meantime, here are some eBulletin Remission Corners with pics (just scroll to bottom of newsletters) to read these SD patient stories and to pass them to your relative. These are real people who can be contacted, if needed, for support. 🙂

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

https://www.roadback.org/emailblasts/ebulletin_fall09.html#New

https://www.roadback.org/emailblasts/ebulletin_spring10.html

Please note Richie’s story…Richie took a good 5 years to see reversal of all his most troubling symptoms.

[Wayne]

Hi Risharisa,

My name is Helen and I am the wife of Wayne who is the one that usually posts. Wayne has SD and has so for the past 2 and a bit years. He has now been on Minomycin going on 24months. When he first started his treatment, we too found not much change, in fact the symptoms were seemingly ramping up. Wayne had a very aggressive version which we now know our Rheumatologist suspected (but never told us back then) that perhaps he wouldn’t be around too long! We hit it with everything we had. Prayer first and foremost, diet and medication. We had the inital IV Clindamycin run in hospital which he found did upset his stomach and bowels quite badly. We didn’t notice too much improvement by memory, but just knew it had to be doing good.

Move forward the two years now, and Wayne is a different man. From the crushing fatigue, muscle waste, acute swelling and so many other systems in his declining body, to now. He is enjoying his life again, doing things he couldn’t do while the disease was raging within. His SD is now in the background, not having the claim on his life as it did have. He continues to have his Dr’s visits, his medication is periodically reviewed, I still give him his fortnightly IM clindamycin injection and we still organise the 4-5monthly IV clindamycin. He continues to surprise his Rhuemotologist and Respiratory Specialist with his forward progress.

Antibiotic Therapy does work – Wayne is testament to that as I know many others on this board are also. We were blessed to be able to pass on this website to a dear fellow SD sufferer here in Perth, Ben (liveinhope) who we know has now also turned the corner on his road to wellbeing.

I pray your Family member will have patience in the roadback to wellness. I know how distressing it is to see a loved one in the grip of this disease, and just hope that its the light at the end of the tunnel they can focus on, whether that be through testamonies like Waynes or others.

God Bless
Helen

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[A Friend]

Risharisha (sp?),
Forgive me if I’ve misspelled your name.

You have been given some encouragement in posts by Parisa and Maz, with applicable specifics for scleroderma recovery on AP. I just want to add that when our bodies have been on a downhill course of illness long enough to have developed diagnoses such as scleroderma and other rheumatic diagnoses, much has gone wrong inside our bodies — and there are many stored toxins inside the body that the body is then unable to address.

When we begin AP, the overgrowth of unfriendly organisms is beginning to be addressed, and while this needs to be done, our sick bodies are the heroes that must do the work of addressing of the results that begin happening, and need
our help in helping to restore itself. Our immune systems will naturally react to the substances being eliminated, as it recognizes these things as “not normal in the body” and will react to them.

Dr. S in Iowa was also my physician for the first three years. However, medical doctors usually have not been trained (or at least don’t seem to prescribe such as nutritional aids, except perhaps probiotics added). I firmly believe we patients need to learn about natural ways to “capture” the die off and help the body “usher” these toxins out of the body.

All of this, regardless of how we are able to achieve turning things around, and restoring our bodies to a more normal condition, we do need daily to pay attention to our nutrition, including drinking lots and lots of pure water. Also, if there is no contraindication, some of the heat methods (this could include regular comfortably hot baths or a far infrared sauna, along with using recommended supplements like Tri-Salts to replenish minerals sweated out. If we do not pay attention to lots of water and good elimination, antioxidants, ETC., we will be leaving LOTS of die-off/toxins in our bodies that need to be ushered out. Forms of fiber (foods and even fiber supplements, i.e. whole husk psyllium, etc.) can be helpful to help usher out the toxins through the bowel. All of these things can take a long time. The patient needs to have confidence, and understand how and why AP has restored other scleroderma and various rheumatic diagnoses.

Since my diagnosis is not Scleroderma, am thinking maybe the links recommended to you by Maz may have information that the patients have used to assist their bodies during their own treatment. You might suggest a discussion with an N.D. or other health professional for suggestions on things the patient might do that would be helpful.

Good luck,
AF

[GayG]

Good morning, I wanted to chime in and tell what I experienced with this issue…my scleroderma was a very rapidy advancing type with the overall skin involvement being the most rapid….my blood pressure did rise since I was in renal crisis and I went into congestive heart failure since the Raynaud’s evidently aggravated a condition with my heart rate that I didn’t know I had at the time…..the symptoms began in October of 2006 and I was in the hospital with all of the above conditions around April or May of 2007 (I can’t remember the exact month)…I also go the definite diagnosis of SD at that time….but after those two hospitalizations to get my condition stabilized is when the skin involvement began…..I began Minocin therapy that summer (July of 2007) and I also went to see Dr. K around October of that year and recieved IV Clindamycin for 10 days…..my experience with all of that was during the first six months while on the AP therapy my condition did progress with the skin involvment….I had been told by another patient that it could get worse before things started to get better and that’s exactly how it happened….I didn’t start noticing any improvement until around 6 months after I first started taking antibiotic therapy…and then it was very “subtle” improvements…and it took off from there, very slowly….one month I noticed that I was doing things i couldn’t do the month before and so on it went until i finally got my life back and can now do anything …just as I was before i got sick. But to get to the point where I was functioning well and was pain free took about a year….(well my knees creak a little when i get up and down but I am 55 and attribute that to age!)…….I also took my minocin with a cracker or two to help with the nausea……hope this is helpful…Blessings! Gay

[foxy]

Just wanted to say that the what a lovely lot of people you are on this forum for the encouragement and hope you give to people.

I do believe fully in AP and hope very soon that my wife will start to take the treatment.I hope the original poster sticks with the AP and starts to get and feel a lot better very soon.

Keep up your good work here and you do make a difference to peoples lifes

[Maz]

@foxy wrote:

I do believe fully in AP and hope very soon that my wife will start to take the treatment.

Foxy, so nice to see you here again! We’ll be here to support you and your wife when she’s ready to get going on AP. 🙂 Thanks for your very kind words of support to everyone here.

[Author]

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