Have I hit an AP plateau?

[BonnieG]

Hi everyone! I’ve been on AP for Limited Systemic Scleroderma since February of 2013. My progress has been incredible and wonderful….but now I seem to have hit a plateau. I”m taking MINOCIN 100 Mg. 2 times a day, M,W,F, and Clyndamycin 300 Mg. 4 times a day, once a week….usually on Thursday.
Should I think about trying/adding another Antibiotic?
Mostly what I’m dealing with now are stiff hands, minor raynauds, and tingling skin in my forearms, hands and face.

All the pain, fatigue, and most of my inflammation is gone.

Thanks!

[Maz]

@BonnieG wrote:

Hi everyone! I’ve been on AP for Limited Systemic Scleroderma since February of 2013. My progress has been incredible and wonderful….but now I seem to have hit a plateau. I”m taking MINOCIN 100 Mg. 2 times a day, M,W,F, and Clyndamycin 300 Mg. 4 times a day, once a week….usually on Thursday.
Should I think about trying/adding another Antibiotic?
Mostly what I’m dealing with now are stiff hands, minor raynauds, and tingling skin in my forearms, hands and face.

All the pain, fatigue, and most of my inflammation is gone.

Thanks!

Hi Bonnie,

Are you still taking 5000mg L-arginine a day? From what I’ve read, tingling can be associated with this supplement due to the dilation of blood vessels. However, so can Raynaud’s when vasospasm occurs and blood vessels constrict, then relax. Also other potentials like injury and neuropathy.

http://www.livestrong.com/article/555956-arginine-and-tingling/

Do you still have the tinnitus from mino? Just wondering if your doc would consider supplementing your mino with doxy to increase the dose? I.e., staying on the current mino dose, but adding in doxy to gradually get you up to the Harvard Protocol. A few people here do this to get the benefit of mino, but also to help avert the skin hyperpigmentation issues.

Alternatively, as you’re already taking oral clindamycin, adding a macrolide wouldn’t be sensible (cross-resistance), but some folks do the CPN abx pulsed protocols (Wheldon or Stratton) that include a tetra, a macrolide and a nitroimidazole (tinidazole or flagyl), doing intermittent pulsing on different days.

http://www.cpnhelp.org/treatment_protocols

A couple of ways to shake things up in other words.

.

[BonnieG]

Hi Maz! Thanks for your reply. It prompted me to update my signature. I have dropped the digesticure and L-arginine…..but am thinking about trying to take just L-arginine and dropping my amlodipine.
What exactly is the Harvard protocol? If it would push me over the edge I am willing to try it. I haven’t been able to get my ring off for two years….nearing my 25th wedding anniversary and I’d like to clean it!
I have also heard of many using flagyl. Is that another class of antibiotic that could help me push through this last hurdle?
I feel like my hands and knuckles are just ‘resisting’.

[Maz]

@BonnieG wrote:

Hi Maz! Thanks for your reply. It prompted me to update my signature. I have dropped the digesticure and L-arginine…..but am thinking about trying to take just L-arginine and dropping my amlodipine.
What exactly is the Harvard protocol? If it would push me over the edge I am willing to try it. I haven’t been able to get my ring off for two years….nearing my 25th wedding anniversary and I’d like to clean it!
I have also heard of many using flagyl. Is that another class of antibiotic that could help me push through this last hurdle?
I feel like my hands and knuckles are just ‘resisting’.

Hi Bonnie,

Here’s info on flagyl (generic name metronidazole) – you’ll find more of drugs.com: http://en.wikipedia.org/wiki/Metronidazole

The Harvard Protocol is the name given to the dose of minocycline that was used by Dr. David Trentham in Boston and his colleagues when running the Minocycline in Early Diffuse SD trial and also Minocycline in RA trial. The dose is 100mg twice daily, but he had his patients gradually work up the dose to help prevent side-effects. Here is a summary of the original trial using the Harvard Protocol:

http://roadback.org/index.cfm/fuseaction/education.display/display_id/113.html

If you’re not sure whether mino caused your tinnitus or not and you still suffer from it, it might be important to work closely with your doc on dosing increases to ensure things aren’t exacerbated. If you’re worried about this, then adding another abx wouldn’t be a bad idea to try. Hard to know what causes tinnitus in every situation – drug side-effect, infection, coincidental, some deficiency, trauma, etc., so these decisions can be challenging to make.

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