Some questions regarding the Harvard Protocol, and herxing with lung involvement

[paper tiger]

I did a search for Harvard Protocol, but nothing quite explained what, precisely, it is and why SD patients seem to do better on it.

I ordered Scammell's book but it has yet to arrive, and I leave in four days for six weeks, so I was hoping some of you could fill me in.

When I searched HP on the forum, I mostly read things about how people with RA don't tolerate it well because of herxing, or about how certain SD patients worked up to it.

Am I right in assuming that the Harvard Protocol is 100mg of minocycline twice a day, every single day? I was doing doxycycline at 100mg BID M-W-F and am now doing the same with Minocin.

I have zero skin involvement and my joints feel fine for the most part (making a tight fist hurts, but none of my day to day stuff is impacted by joint paint). I do have pulmonary fibrosis (I've only done the most basic breathing test, and apparently I am at just shy of 60% lung capacity). From what I have gleaned from searching the board, AP users tend to pulse their meds to better cope with herxing. If, then, I don't seem to be herxing (no flu-like symptoms, anyway), is it beneficial to go with the Harvard Protocol instead?

Finally, and this is what has been driving me nuts for a few weeks: I only learnt of my lung involvement a week and a half ago (though I'd been feeling a bit of discomfort taking deep breaths for a couple of weeks). I immediately switched to Minocin. Since then, I have had infinitely more difficulty breathing, especially when lying down. I even developed a dry cough. Is it possible that my increased difficulty breathing is a herx?

I don't have access to an AP doc for another two months so I'm kinda just doing all the research I can and winging it. My pulmonologist wants to stick me on cytoxan when I return in late November, but that drug is absolutely not up my alley. Hopefully, I can have some luck with Minocin before then.

Tracy

PS
I'm about to run to the pharmacy to enquire about NAC. Is there a huge difference between the OTC stuff and the stuff you get by prescription? Or is the latter just a cash grab?

Thank you!!

[paper tiger]

Okay, I just had a pretty unhelpful experience at the pharmacy.

How, exactly, do you guys take NAC? They were willing to bring it out and show it to me, but apparently I need some sort of device to inhale it? And then they began to ask me 20 questions about why I wanted it.

[richie]

Hi=–The Harvard Protocol is named for Dr T who is at Harvards Beth Israel Deaconess hospital in Boston as well as being part of Harvard Medical Faculty –its exactly this

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100 MG of the brand of minocycline called minocin twice daily —no food or other meds for two hours before or two hours after taking the minocin -only water or seltzer water —The morning dose takes some experimenting –I found breakfast first -also take other meds –then wait two hours then the minocin then   wait two hours then lunch –the second dose is much easier to fit into most schedules —the results obtained have been outstanding –about 5 or 6 years ago a rough study showed about an 85% success rate —-Glad to say that I was his patient –am in complete remission –still take the med as I have seen too many  relapses whenpossibility  going off the med —
richie

[Parisa]

Papertiger,

My husband takes NAC (n acetyl cysteine) in capsule form.  He takes 600 mg twice a day.  We originally purchased it from GNC a store that sells vitamins and supplements here in the states.  We now buy it from  Jarrow Formulas.   

As far as your increased lung symptoms, I have read here where some people when they start treatment start to get die off in their lungs whch sometimes turns into pneumonia.  Please keep a watch out for that.  Are you traveling somewhere? You have to be careful about flying when your lungs are compromised.

[paper tiger]

[user=16]richie[/user] wrote:

The morning dose takes some experimenting –I found breakfast first -also take other meds –then wait two hours then the minocin then

[Parisa]

Papertiger,

We received mixed messages about flying.  The pulmonologist didn't have problems with short flights and the gp thought it wasn't a good idea.  We did fly an hour and a half at one point a couple of years ago to see the LLMD.  Upon listening to his chest, the LLMD thought my husband was developing pneumonia.  We hightailed out of his office and rented a car to drive the 8 hours home as we didn't want him stuck out of town if things became serious.  When the gp examined him, he believed that the pressure from flying basically made the lungs more sticky which was the sound that the LLMD had heard.  At that point in time, my husband's lungs were so scarred up that simple chest x-rays and even CT scans couldn't always diagnose pneumonia, especially in the beginning stages.  Just be aware that the changes in air pressure do create an extra stress on the lungs.

Hopefully, your GNC will have the NAC and you'll be able to start taking it.  Next step is to get someone to prescribe you some Zithromax!

[paper tiger]

[user=13]Parisa[/user] wrote:

Papertiger,

We received mixed messages about flying.

[Melinda]

Hi Paper Tiger,

I don't have a lot of info on the air travel/pulmonary fibrosis question, but I do have a possible suggestion.  Could you check with your doctor or preferably a pulmonologist before your flight(s)?  Especially since you aren't flying just once, but repeatedly on your tour.  I think that if it were me, I'd feel more comfortable if I checked it out with the dr first.  My experience is just with my parents, both of whom have COPD (but have never smoked) and my own asthma.  Perhaps your dr can prescribe either an inhaler or a portable oxygen generator if he/she thinks that it may be necessary or helpful.  If it were me, I'd just want to be prepared, just in case there is an issue, before getting to 30,000 feet.  Take care.

Melinda

[richie]

Hi-I take breakfast first for two main reasons –I take other meds just before breakfast -and I found I had no problems taking it this way —waking up and taking the minocin first didnt agree with me –Lets not forget the purpose of daily dosing– it was tried as to avoid intravenous antibiotic –the pulsing for scleroderma actually included the taking of intravenous clindy initially –this is avoided in daily dosing —

richie

[Parisa]

Papertiger,

I stumbled upon NAC when I read Richard Firshein's Neutraceutical Revolution.  He recommended NAC for lung conditions.  I then found additional research that showed it could be helpful for the lungs and also protective of the lungs.

http://ajrccm.atsjournals.org/cgi/content/full/156/6/1897

Later after my husband had been on NAC for a while I also found out that it is part of the treatment protocol for c. pneumonia at cpnhelp.org. 

[Author]

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