ZITHROMAX

[Guest guest]

Yes, I do the same, 500mg zith 2 hours prior and then they have me take another 250mg the next day. This is because of my heart. But I feel much better after I see the dentist.LOL At least for a week. No flares during that time.

claudia C

dEAR ..This is so weird...I really need to talk to Pete's doc about this because for about a week after he goes to the dentist he feels really good. Kinda goes along with the minocin takers doesn't it??..Janet G

[Guest guest]

In a message dated 1/21/01 7:54:15 AM Pacific Standard Time, Baaboo19@...

writes:

<<

dEAR ..This is so weird...I really need to talk to Pete's doc about

this because for about a week after he goes to the dentist he feels really

good. Kinda goes along with the minocin takers doesn't it??..Janet G

>>

Janet, yes, I think this does go along with the minocin. I had bronchitis

and they put me on a full dose of zith. After 4 days, I felt terrible. My

urine smelled terrible, I ached all over. Couldn't figure out what was

happening, then I figured out it was working like the minocin and getting rid

of all the toxins. It took me 2 weeks to feel better. Guess the zith was

out of my body by then. I kept telling my drs. that I felt better when I

went to the dentist and their reply was always " That's interesting " LOL

Well, now that I've wrote you a novel, I guess I'll shut up.LOL Hope Pete is

doing better , tell him Hi for me.

Hugs

[Guest guest]

dEAR ..This is so weird...I really need to talk to Pete's doc about this because for about a week after he goes to the dentist he feels really good. Kinda goes along with the minocin takers doesn't it??..Janet G

Yes, I do the same, 500mg zith 2 hours prior and then they have me take another 250mg the next day. This is because of my heart. But I feel much better after I see the dentist.LOL At least for a week. No flares during that time. claudia C

Hi Janet :-)

Zithromax reallllly helped to attack my cough. When I first got sick, and during the months that it took to get the first official diagnosis of dermatomyositis, I was given Advil (fairly heavy doses,) and then was switched to Relafen. While these meds took the edge off of the aches and pains that go with these rheumatic diseases, I also noticed that they were working on the cough. At the worst point, I was coughing somewhere in the range of 50 times a day (not exagerating here, OK?) ....uncontrolled, and it felt like someone was poking a stick in my throat. Sometimes, maybe once a month, I would have an especially bad episode where I would suddenly cough to the point that I felt like my windpipe was taking on a squished shape instead of round, as I could feel it and the noise on inspiration sounded like someone who is having an asthma attack. It sounded like I was gasping for my last breath, even though I felt like I was getting enough air, but it definitely wasn't fun. The Advil/Relafen reduced the cough to maybe 25 times per day....still a lot, but in my case, a lot better. The bad cough episodes were also less frequent.

The chronology of this is basically: Minocin, at 100mg three days per week (usually Mondays, Wednesdays, and Fridays) and I was on it for three months and then Dr. Franco upped it to 200mg three days per week. During this time, I also noticed that "something was happening" like Carmela has mentioned. The aches and pains were becomming less and less and also many other symptoms began to receede....including the brain fog and depression and others. My cough esentially remained the same in response to the Minocin, though. After being on the Minocin for about six months Dr. Franco added Zithromax to my regimen. I took it only twice a week, on Tuesdays and Saturdays, 250mg twice on those days. Within a few weeks I was noticing that my cough was beginning to lessen.....not a lot, it is a slow process. Also, after the first two weeks, I also noticed that my cough did increase for a short time.....I felt so frustrated at the thought of it increasing....but then I remembered the temporary Herxheimer reaction that many people experience when they first start Minocin or Zithromax or even change their dosages. Within a month, I was cauthiously optimistic....and have since noticed that the Zithromax has definitely had a huge impact. I continued with this pattern for the next eighteen months......basically all symptoms were being controlled and I was back to between 80 and 90% to my original health. At that time, I had noticed for a few months that I was getting a fair amount of cramps and diarreah on the Zithromax days. Knowing that antibiotics can potentially cause a severe bacterial overgrowth called clostridium difficile, I called Dr. Franco's office. (I had also been taking acioophilus/bifidus throughout this time, only not at the same time as the antibiotics, as they will counteract each other.) Dr. Franco had me stop the Zithromax, and increase the Minocin to six days per week.

I forgot to mention my ears and how they are connected to all of this......During the past four years I would notice that my inner ear(s) would sometimes really hurt. The first time it happened, I was already on a penicillan antibiotic for a urinary infection. Well, it only lasted a few days and since I was already on an antibiotic, I figured the "ear infection" would go away and it did. Off and on, maybe every three to six months, I would notice the ear pain but would forget to mention it to any of my doctors and I only get to see Dr. Franco once a year, as he lives in southern CA and I live in WA state. Anyway......in February of 2000 I finally went to an ENT and he discussed the possibility of RP. He told me to come back if they turned red :-) Well, I watched.....and watched....and still was on the pattern of painful ears about every 3-6 months, but nothing more. It was in April of 2000 that I had to go off the Zithromax (as mentioned above) and by June of this past summer I started noticing that my cough was beginning to increase (ugh!) and also, I was noticing more RP sysmtoms. Dizziness became a problem and Advil seemed to reduce it so it was almost unnoticable. (I wonder if this fits into the criteria of RP responding to prednisone, while Advil is not prednisone, they are both anti-inflams??) In September, my ENT did some tests, ENG, MRI and CT scan. Nothing terribly out of the ordinary showed up. By November I was noticing that my ears were turning red......not enough to stop traffic, but red, none the less. The redness would come on each evening, around dinner time maybe and last for a couple of hours.

In December I called Dr. Franco's office to report the increase in coughing. He had me keep the Minocin at six days per week, but also prescribed Biaxin, to be taken 250mg twice a week, for five days out of the week. Sunday is the day I take no antibiotics. It took a month of this latest pattern, but I am now noticing that my cough is decreased again, and for the past week, my ears haven't had their nightly red session. I think the Minocin and the Zithromax/Biaxin have been very helpful in my situation. The Minocin also has anti-inflammatory properties, in addition to antibiotic. The Zithromax/Biaxin have properties which allow them to penetrate certain respiratory tissues. I go for an appointment to see Dr. Franco in mid-February and will update afterwards.

In the meantime, you might want to look at Dr. Franco's (and his new associate, Dr. Lallande) website at:

http://www.thearthritiscenter.com/arthritis/ The original protocol for using antibiotics to treat rheumatic diseases involved Minocin, but also another antibiotic called Clindamycin, usually delivered by IV. Dr. Franco was the one who started using Zithromax and Biaxin and has found success with these, as well. The original physician's protocol is at www.rheumatic.org and there is also a FAQ section that might be helpful for Pete's doctor.

Whew!! sorry for the litany! I hope you are still awake :-) Let us know how you and Pete are doing, OK?

take care and lots of hugs to both of you,

Connie H.