Harvard or Historical?

[Airen]

Which do you follow? My dr. prescribed my minocylcine at 100 mg 2x per day, every day. At the moment I have chosen 100 mgs 1x per day, MWF. Have you stayed on that same dose? Did you start on the harvard and have a horrible flare? I am still on 15 mgs prednisone and am not sure how to dose everything. Of course I want to see results ASAP but am not sure how to go about this. How long til you noticed results on your protocol?

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[jasregadoo]

I tried the Harvarrd protocol for one week. I didn’t notice a significant increase in pain or stiffness, but I felt sick like a dog. Nauseaus, exhausted, etc. I cut back to 1x MWF. I’ve tried to increase to 2x MWF, but I find that I generally feel worse on that dose, so then I cut back to 1x MWF. I am feeling much better. Not all better by far, but better than I was. I’ve been on since the end of February.

[Airen]

Thanks for sharing your experience. When you’re not feeling well you want to speed up the process but I know I have to be patient.

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[Jeanies Girl]

When we had our last doctor’s visit I asked her how to help flush the toxins from any die-off out of our system. She suggested using Milk Thistle. Of course, I haven’t got around to getting that done yet, so I don’t have any personal experience yet to report.

Jeanie’s Girl

DX: Bacterial (mycoplasm) infection
AP: Began June 2015
Clindomycin IV 900 mg-every 3 months for 5 days
Minocycline 100 mg MWF am and pm
Flagyl 500 mg 2 x day for 3 days in a row every month
Symptoms: Since approximately 1997-Extreme fatigue, (Intermittent: muscle weakness, stiffness, brain fog, lack of stamina)
Supplements: Vit. C 3000 mg, Vitamin D 5000 IU every other day and 10,000 on remaining days, Vitamin B complex, Fish Oil 1000 mg 2 x day

[Woods1977]

Everyone is different, but I

[Airen]

Thank you for your input. I’m definitely sticking with MWF dosing. I’m about 4 weeks in and feeling pretty awful so I couldn’t imagine everyday!!

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[jasregadoo]

Airen,

Looking at your signature, I don’t see that you are taking anything to help with your pain. I know that none of us want to go down that road, but I wonder if you might get some relief by trying some NSAIDs and/or prednisone? Dr Brown used both in low amounts to help his patients, especially through these rough early months.

In addition to providing some relief to your current misery, I remember Dr. Brown saying it can be helpful in reducing the inflammation, so the mino can get in and do its thing better.

All of these are personal decisions, and best discussed with your doctor. But if I were in misery, I think I’d try to find some relief. It might give you the help you need along this road.

And also remember that this too shall pass. I believe in this path we are on, it has helped so many. But even if it doesn’t end up working for you, you can try another path, and this current misery WILL NOT be the rest of your life. I have a relative who suffered from reactive arthritis, was in a wheelchair. His doctor put him on Methotrexate, and he’s in total remission, and ran a marathon! I’m not switching over after hearing this story, because I know the MTX was difficult, and it has some serious potential side effects that I want to avoid. But it was nice for me to hear that there are many roads we can travel, and that one of them will most certainly work.

Hang in there. 🙂

Julie

[Airen]

Julie,

Thanks for your response! Actually have been on 15 mg of prednisone for over 7 months now! At first it was wonderful!! Practically no pain! Now lately…especially these last few weeks, it isn’t helping so much! I was/am worried about the AP not working since I’m on such a high dose of pred. Dr Brown prefers you only on 1-5 mg and 10 mg during a flare. I worry it is too high and won’t work! BUT I can’t go off of it…I don’t have anything else helping me right now. Also, because of the LDN I can’t take any pain meds. Are you on pred too? Have you noticed any improvement yet?

Airen

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[jasregadoo]

Gosh, now I clearly see the 15mg pred on your sig. I had just woken up earlier, so I’ll use that as my excuse. 🙂

I’m on pred, though I’ve been able to taper down to 1mg a day. I was at 20, then 15, then10 for a little while, and like you, it helped a lot at first, but less and less as time went by. That helped me to decide to taper down. The fact that it wasn’t helping as much. I don’t know whether you would benefit from tapering down to 5 or 10 mg at this point or not, though I do know enough to know that if you were to try, you should do it slowly.

I am feeling better. Not normal or as good as I did before all of this stupidness started a year ago, but better. I can get down on all fours now, which I couldn’t do before due to pain in my wrists at that angle. I can still feel some pain in my wrists at that angle, but not nearly so bad. I am able to do most of a (VERY EASY) yoga video, which I couldn’t for many months. I felt good enough to take a walk the other day, and ended up regretting it, because my feet were angry with me for the next two days. Frustrating. But yoga helps, swimming helps. Sleeping helps (I sleep 9 or 10 hours most nights, and try to get in a nap if I can some days). I’m not as tired as I was, and there are days when I don’t feel like napping. A few months ago, I NEEDED a nap every day, at least an hour.

I felt like I was making good progress for awhile, and now I’m kind of stuck where I am. Better than I was before, but not a consistent improvement. I’m thankful to this site for the encouragement, and the support it gives that lets me know this is normal, and not to give up.

I wish I had wise words on what you should try next. Maybe a washout, and come back after a week only taking 50 mg MWF? I don’t know. My Mino is in a capsule, and 100 mg, so if I were to cut down, I guess I’d have to ask for a different prescription.

Hang in there. We’ll get through this.

[jasregadoo]

Airen, I see you’re taking 5000mg of D3 a day. I know some poeople have issues with D causing pain. My pain got much worse very fast when I started taking 5000mg of D3. Perhaps it was a coincidence, perhaps not. You might try backing off of that and see if you have better luck. I’ve seen comments by Phil C that it caused him a lot of pain as well, and he did better by taking a lot less. I’m at the point now where the D I get is in my multivitamin, my calcium chew, and the sun. The D3 supplements just caused me too much pain.

Another thing I see is that you take a lot of calcium. Do you take any magnesium? Sometimes too much calcium with no magnesium to help balance it out can cause problems for many people.

Just a thought…

[Airen]

Thanks Julie. I’ll try knocking that back al little to see what happens. I do have the calcium listed but I don’t take it very often. I don’t take magnesium and see it a lot and wonder if I should be taking it. Is there a test to check for that deficiency? I can ask my doc.

Airen

Diagnosed with RA in October 2014, pain started in February 2014
Started AP in June 2015
Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

[jasregadoo]

I did a bit of research on Milk Thistle. It can affect the way your body metabolizes your medications, so if you’re going to try that, best to take it at a different time of day. 🙂

[Author]

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