don’t know what to do

[Anonymous]

My father, who is 57, was diagnosed with systemic scleroderma a little over a year ago. At exactly a year ago today he went into renal crisis and has been on dialysis 3 x’s a week ever since. He has been seeing many specialists including a scleroderma doctor at Johns Hopkins. My mother stumbled upon the book that led us to this website. About 3 months ago we took all of the information about the antibiotic therapy along to the appointment. I approached the subject with the doctor and the response was – “despite what you read on the internet, it’s not proven.” So then I asked-“What is the worst that could happen if he tried it?” The doctor said- “He could become immune to the antiobiotics and we need them in case he gets sick because his immune system is repressed.” Then the doctor turned away from me and I was promptly excluded from any remaining discussions for the rest of the appointment. Now I don’t know what to do. My dad has gotten sick with the flu and also had gotten a blood infection from his dialysis catheter which were treated with antibiotics. Half of me wants to push him to go ahead with the antibiotic therapy, and the other half of me worries that the doctor may be right about not wanting to become immune to them. I thought maybe someone out there may have experienced something similar and has some advice or opinions. I feel like we need to do something because I’m watching my dad die and it’s killing me.

[Maz]

@MelanieG wrote:

I approached the subject with the doctor and the response was – “despite what you read on the internet, it’s not proven.” So then I asked-“What is the worst that could happen if he tried it?” The doctor said- “He could become immune to the antiobiotics and we need them in case he gets sick because his immune system is repressed.”

Hi Melanie and a warm welcome to the RBF discussion forum.

Unfortunately, the John Hopkins physician, as smart as he probably is, is not aware that tetracycline abx are prescribed to teens for acne every day for long-term use and that the risk of resistance with this class of abx is quite slim, as bugs mostly develop resistance on their cell walls and this particular class of abx does not affect cell-walled organisms! They are a class of abx called “bacteriostatics” and only affect bugs that are cell-wall-less, unless used in much higher doses than is used for AP (antibiotic protocols as per Dr. Brown).

http://en.wikipedia.org/wiki/Bacteriostatic

So, either this doctor was just giving you the brush-off or he just doesn’t understand the mechanism of this abx. 🙄 Tetracyclines can be used pretty much indefinitely and actually guard against abx-resistant bugs as per the following.

http://www.sciencedaily.com/releases/2011/04/110411163811.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily+%28ScienceDaily%3A+Latest+Science+News%29

The irony of the conventional treatment of scleroderma and other rheumatic diseases is that the drugs employed are immune-suppressive drugs…used to palliate the disease and perhaps slow progression, but not to stop its inevitable downward course. What this means is that the immune system is effectively unable to identify bugs and they run a-muck without the body’s natural surveillance system being able to recognize them. If one doesn’t have an immune system, as a result of these drugs and compromised immune function to start with, they are going to be on a repeat courses of abx anyway.

Besides this, there are many classes of abx that are both bacteriostatic and bacteriocidal (bacteriocidals kill bugs outright by breaking down cell-walls of bugs that actually do have cell walls whereas bacteriostatics, like minocycline and doxycycline tetracyclines, only disable cell-wall-deficient (CWDs) bugs by interfering with certain enzymatic processes and the immune system does the actual killing). So, if one type of abx doesn’t work for a particular bug, there are others that can be used. Tetracyclines have been around for a long time….even the ancient Nubians used tetracyclines in their beer for gum disease. You’ll find an article on this in an old RBF newsletter:

https://www.roadback.org/emailblasts/ebulletin_fall10.html

Minocycline or doxycycline can also be used in folks with renal issues, as it’s mostly broken down in the gut. In some cases, its use has actually helped to reverse some kidney issues, although once kidneys are damaged this can be difficult. The best results for SD tend to come with early treatment, although it really depends on how aggressive and entrenched the disease has become and some folks with long-standing disease have done very well, too.

I have spoken with Pat Ganger, who was a founder of RBF, some 20 years ago and who has now been on minocycline for over 30 years for SD. She was a patient of Dr. Brown’s before his passing and is an elderly lady now, but has remained in sustained remission from the disease and is still going strong! There is a lot that can be done to support the treatment, too, if your Dad is interested in giving it a go…and as Dr. T. (now retired) mentions in the article in the above newsletter link, minocycline can pretty much be taken with any other conventionally-used drug, so no need to stop those things cold-turkey, either, though ultimately everyone hopes to wean off those drugs.

Hope this helps some, Melanie…you’ll find lots of SDers here on minocycline, but hope the above links help in some way. If your Dad needs a list of AP physicians, would be happy to supply a provider list, and Dr. S. in Iowa is very kind to freely answer questions via email and phone.

[richie]

Hi–Was it Dr. W at Hopkins –he is head of the unit and I understand while he doesnt embrace antibiotics -he has become a bit open to discussing it —By the way –the immune arguement just doesnt hold water –as tetracyclines is generally not prescribed for common infections because there are far better more effective antibiotics —
richie

[richie]

Hi—I have been taking the largest dose recommended of minocycline for now 13 years —-I used DR T up at Harvard –while I enjoy good health now and have complete remission from systemic scleroderma I continue the medicine to prevent any relapse –my immune system was never regressed –in fact the basic disease is an over active immune system that overproduces collagen –I have no problems with taking 200 mg of minocycline daily —hardly get colds and when I get the rare so-called URI –{upper respiratory infection } I am given a different antibiotic right along with the minocin and in two or three days –All better –hardly any kind of immune issue —
richie

[Anonymous]

Hi to all, I want to thank you so much for responding to my post so quickly! I must confess that I am new to posting and discussions on the internet, so I wasn’t sure what to expect. The reply’s have so much helpful information!! In response to the question of the Hopkin’s doctor- it was actually Dr. H, I believe she is right under Dr. W. I guess I should have been prepared for the response that we got, but I thought that being a specialist in Scleroderma would make the doctor a little more open to what’s out there. My mistake. As of this morning I’ve found out that my dad has to stay in the hospital even longer because the blood infection from his dialysis catheter is back and may have infected his spine. It feels like a compounded downward slide. I am going to sit down with my mom tonight to discuss starting the antibiotic therapy as soon as my dad is out of the hospital. I know that my mom will be on board, and at this point, my dad is willing to try anything. We just need to discuss how to go about starting all of this. I believe that we should try to find a doctor that is experianced with AP because of all of my dad’s complications. Our family doctor is a great guy, but I know from discussing this with him a little bit that he is not familiar with AP. I suppose our first step should be to e-mail and try to find an experianced doctor as close to south-central PA as possible, as my dad can not travel too far due to dialysis, etc. Again, I want to thank you for your wonderful and quick responses! I guess I just needed some encouragment. Your personal stories fill me with hope again.

[gratefulgirl]

Melanie, Maz & Richie shared a wealth of knowledge which I hope helps you & your dad find his Road Back to health & wellness! What is so great about this forum is that I am always learning or being reminded about important things regarding AP through questions such as yours and the responses of the wonderful folks who moderate & participate on this site.

You are both in my thoughts & prayers! Wishing you solutions & support in this trying time. Happy New Year, GG

[richie]

Hi–You might ask Maz or another volunteer for a doctors name in I think northern VA or Washington area –shouldnt be too bad of a drive –PS –we spend much time in the Lancaster area –in fact going there for this long week-end —
richie

[Maz]

@MelanieG wrote:

We just need to discuss how to go about starting all of this. I believe that we should try to find a doctor that is experianced with AP because of all of my dad’s complications. Our family doctor is a great guy, but I know from discussing this with him a little bit that he is not familiar with AP. I suppose our first step should be to e-mail and try to find an experianced doctor as close to south-central PA as possible, as my dad can not travel too far due to dialysis, etc.

Melanie, I just saw your email that you had sent to the AP doctors email address and have replied with the full list for PA and also two of the most experienced AP docs, if travel becomes an option or if you need Dr. S. in Iowa to consult with you or your Dad’s local physician.

Do hope your Dad is out of hospital soon and his acute infections are quickly controlled. Poor guy – not much fun spending the holidays in hospital. 🙁 Sending very best to you and yours, Melanie. You’ll find lots of peer support here if you hang around or have any questions.

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