Dosage suggestions Scleroderma

[stevewrightfilmmusic]

Hi all,

My first post here. I am writing on behalf of my mother in law. She has Systemic Scleroderma, for 15+ years.

A little over two years ago she began self-administered AP. She is in Ecuador, where support for AP is non-existent.

For the first year or so, she showed improvement. However more recently she has not been doing good so well, and we had hoped for a more significant improvement given various testimonials we have read.

We feel like there is more we can do. Currently she has 100mg Minocin, 2x a day, M W F. She never began with an IV of clyndamicin, as she is going about the treatment without the support of her doctor.

What are other people taking? What might you suggest we change in her dosage/additional meds, to help the therapy along a bit? We know that it can take time to see benificial effects, however we also know that we are currently doing the bare minimum in terms of what the therapy can involve when you are doing it with the full support of doctors.

Any sharing of personal experiences etc would be very appreciated!

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Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Maz]

Hi Steve,

The standard dosing for SD is 100mg twice daily, as per the Harvard trial.

We are just fellow patients and unable to provide medical advice, but patient experience shared here is that SD patients generally do better on the 100mg twice daily dose. In some instances, tolerability is an issue, so dosage is titrated down to a Pulsed or single daily dose.

[stevewrightfilmmusic]

Hi Maz,

Thanks for your post – I appreciate other members can’t advise truly, as of course every patient is different and everybody responds to different medications differently.

I suppose what I was hoping to receive were various people’s approaches with regards to other meds+dosage, so we can go away and do more research into the various medicines that accompany the Mino, and maybe try some other combinations out to see if it helps give the therapy a kick up the backside!

I know there are a variety of other drugs that can be used in tandem (such as clyndamicin, LDN, etc), so I was hoping for people to briefly explain their approach, to be able to compare and see what other things we could try.

Thanks again, and thank you for forums such as this.

Steve

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Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Luck20]

I’ve been doing mino mon thru fri 2x a day, 100mg.

Originally, I was also on Tinidazole on weekends, 2x a day 100mg and Azithromycin 2x day, 100mg, 4 days on 10 days off. These other antibiotics were done in addition to the mino to take care of any possible underlying infectious trigger. Herbs and other suppliments can often be used for any posible underlying coinfections in ADDITION to antibiotics. I’ve read of Lymes drs doing this and having success. The more I read, the more I see the incredible potential.

I think its really exciting shes from Ecuador. Does she have access to any traditional healers that might have any ideas or insights into other treatments, especially with herbs? I’m all for combining mainsteam medicine and alternative medicine. With Scleroderma, I just don’t think most have time to sit back and wait for a possible wonder drug that might not come. We need to keep looking for other options.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[stevewrightfilmmusic]

Luck20,

Thanks for your reply. I’ve noticed that most people are on 2x100mg mino Monday thru Friday, whereas my mother in law is only on M/W/F. I think we may increase to all days and see how she responds. Similarly I’m going to look into the extra AB that you mentioned. She did begin with a course of Clyndamycin (oral tabs, not IV), but this brought on anemia so she had to stop. Is there a reason you used Tinidazole and Azithromicin instead of the more commonly suggested Clyndamycin?

I also noticed in your signature that you are on LDN – is this for pain? My MIL is on Gabapentin and Lyrica for nerve pain, but they make her feel drunk and stupid so we’re on the lookout for alternatives…

Thanks again for your information!

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Cheryl F]

Steve~

Hello and welcome! I am glad that you have come to the discussion forum to interact with others and see how they and their physicians have implemented AP.

My daughter started with 3 days of the IV clindy. Many SD patients I have interacted with have gotten a good kick start with the IV clumsy treatment. So, possibly see if there is any way to access that treatment. I know it’s very difficult.

When my daughter started AP, she did show good improvement from the 3 doses of IV clindy and then 100 mg 2x daily, everyday of minocin.

Even though she was showing rapid improvement, from learning what others were doing, based on their physicians, I decided that we wanted to add 250mg of azithromycin, M-W-F. Later she did multiple 5 day courses of Flagyl. This was 13 years ago, she remained on this protocol for the better part of 9 years, tapering her doses significantly in the last few years that she was taking this protocol.

I hope this information helps you and your MIL to determine if there are additions or modifications to her treatment.

On a completely different avenue, we had one forum participant who had scleroderma and did AP and saw a good deal of improvement, but incomplete. As she explored various avenues to consider for treatment, she came across a non prescription anti-parasite protocol. She started this protocol and she began to see parasites leaving her body. After a couple months she saw significant improvement. This is just to say that some patients need to continue to explore the potential underlying pathogens and consider treatments that can work synergistically with the AP.

Best~

Cheryl

[stevewrightfilmmusic]

Hi Cheryl,

Thanks for your response. Yes, it’s amazing that these forums exist, and more amazing that people are prepared to take their time and share their knowledge just to help others. When we are in a better position of knowledge and experience, we will be sure to do likewise!

The problem we had with clyndamicin is that it brought on anemia. We weren’t able to get it via IV; she had to take tabs. I can’t remmeber exactly how it went, but it was something like 4 days on, each day increasing dose, then 10 day rest. Then the same again, for around 2 months. This was based on some advice from another fellow sufferer.

We don’t want to risk any complications by trying Clyndamycin again, hense the search for something else to boost the Minocin. I feel that we should definitely start by increasing her Minosin doses to every day. Her bloodwork always come back good, so she can obviously take it.

Next we will perhaps try out one of these other ABs that you and Luck20 have already suggested.

And yes, completely hear you regarding your final comments – everyone has to explore their own avenues. However for now, it’s interesting to see what has helped for others.

Thanks again everyone for your contribution

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Luck20]

I had forgot to mention the Clindamycin. I did a few times of the IV’s early on a had great success with it. It turned around the progression in my feet.

The Tinidazole was never explained to me well but I’ve read lymes dr’s use it as a biofilm buster. I’ve also come across references for it being used for cystic forms of lyme and mycoplasma. I believe its used for some parasites too but I’m not positive on that. I’m using Monolaurens now to replace it. I’ve read serrapeptase and oregano oil can be used too as a biofilm buster. Grape Seed Extract and Grapefruit extract, I believe are other possible alternatives.

Also, forgot to add, I was taking 1 fluconozole a week as a preventative of yeast issues. I think that might have been a key problem as well. I think I could have went after yeast much harder in the beginning and that was a major trigger. Luckily all my diet modifications helped bring down my yeast issues. I’m currently reading “The Yeast Connection and Womens Health”. By Dr. William Crook. It was really an eye opener compared to other yeast/candida books! I plan to go after yeast again in the future.

Cheryl– good point on the parasites! Thats my next angle of research. I have a feeling I have issues with that.

For parisites, on the GI Map website, theres a 40 page link to all there testing and treatments, both rx’s AND suppliments and herbs. I don’t think the list includes every option, but its a great starting point. I’m still on the fence about the test, but its intresting reading to figure out how to preceed.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

Yes, the ldn is for pain and to improve immune function. From what I read, its hit or miss. It helped me after 2 days from foot pain! Works great. You can type into the search bar ‘ldn’ and research further. I pay $40 a month through a compounding pharmacy. Insurance doesnt cover it but its so worth it! The trick is finding a dr that knows its value to perscribe it. Luckily, I have good luck with getting this one.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Hi Steve;
Looks like I am late to the party.You have good info from Cheryl and Lucke so I won’t add anything.Just want to say HI and give your MIL a hug from me.
Everyone else…I am posting a great article about a vet’s view on Lyme.Very interesting read.

[Author]

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