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hey all, thanks for the great support, feedback and suggestions... i'm actually looking forward to the flagyl, just with a dose of trepidatoin!

spent quite sometime reading much conflicting info on zithromax intake protocol, but for now, will try to take on mostly empty stomach unless i have stomach upset... crist's rx says take with food, but i know it is to protect patient... a lot of literature indicates that it may bind with food in intestines and not be well used... so today i had a small bowl of cereal about two hours prior to taking it... we'll see. also, no magnesium for sure and controversy about iron, so no iron... just avoiding multi vitamin within 2 hours of it...

tinuviel, we're going to a hockey game friday night so i'll wait to take it after that... great seats and enjoy time with sister-in-law, so i'll wait till i know the coast is clear... :cool:
and thanks for the ginger syrup tip... will look that up next... this board is the best!

shanna,

i am exstatic at the progress you are making!! when i heard you were having to go back to meds, i told my husband and expressed my concern for you.
you've definitely made progress to be able to handle zithromax AND some flagyl... i highly recommend ceftin for an 'easy to take' med - no drug/food interactions and very effective for me...

as for the alchohol... yep, that's what i've read...down to the toothpaste, etc possible. i had my first alcohol in MONTHS saturday night... and i really got a buzz on just a bit... must say, i really enjoyed it. daughter is taking me to a little feat concert in a few weeks but no alcohol cj... i drink very little, but sure like my margariitas every now and then... had become very disciplined until saturday night... :rolleyes: back on it...

maureen,

i felt so good on ceftin till my week of bigtime 'overdo'... and i haven't been the same since... feel like i've got fibromyalgia type symtoms in my shoulder/neck back and hips have been bothering since as well... oh well, live and learn.

shoulder work will be a process. but i went yesterday and we did make ground for sure... pain just drives me batty... goes up in collar bone, neck and its hard for me not to whine...

crist did differnt meds with you and me... and didn't do any 'rests' for me... i guess i'll just try to take flagyl as he prescribed at first, and see if i think i need to request pulsing, depending on how i respond to it... but will definitely start off VERY SLOW, LOW DOSE, with an open mind that I won't necessarily be sick from it...

your post was long, so I'm following it as I reply... :D
I'm thrilled for you to have gotten back the results you did with western blot... i don't think most folks meet cdc standards... that doesn't mean squat! and again, so proud of you for honoring your husband's needs, taking care of yourself, giving this a try...

i'd have to pull out my igenex testing but i think they show that cdc requires 5 on one test and 2 on the 'other' test... you may have met cdc on the one test... but again, WHATEVER...

as for the massages... crist mentions it literature that he thinks a weekly massage is good but he is referring to a relaxation massage, not lymphatic drainage massage - way different... (unless he specified ld massage on your paperwork)... i was going weekly for massage up till heart problems and i really felt that it helped keep things moving...

i think it's a mind blower that you've had spurts of energy to clean like you have... i notice on ceftin that the feeling good really crept up on me, like all of the sudden, i realized, hey, i feel pretty darn good! yahoo!

hang in there maureen... you're doing it!!
Hi guys,

Shanna,
I am so excited for you. I guess the IV did what it needed to do and now the orals will finish the job. I remember the days you were so sick from the sliver of flagyl so this is a major step. Good things come to those who wait and you have definitely waited. Hopefully we will hear nothing but progress from this point forward. Will you get to see your boyfriend over Thanksgiving and Christmas? I hope so because I think he lifts your spirits. I am sure your parents are so glad to see the improvement even if it is baby steps. Tell them I said "hi". Keep us posted on your progress and I pray it will be the omen of good things to come.

Maureen


Dear cj,

I'm with you as far as the flagyl goes. No pain no gain. We have all had this for so long that we are just about willing to try anything especially the "hard stuff".

I talked to one of the nurses at Dr. Crist's yesterday and just like I figured my "break" is really a switch to biaxin 2x a day and plaquenil 2x a day. Not really a break just a break from the clindamycin and quinine. I didn't think he wanted me to stop anything altogether. I can understand why he has to rotate the clindamycin because it says on the warnings "can rarely be fatal". Yikes! So until I run out it is a 10 day rotation for the 2 combos. I asked his nurse if she had ever heard of Flora Q that my ID doctor's nurse told me about and she hadn't but said she would mention it to him. According to the ID's nurse it is just like flagyl and does not cause all the problems. She said her patients love it over flagyl. Wouldn't that be nice to take something that wouldn't upset your system. I am anxious to hear if he thinks it is the same.

I got to ask a lot of questions and I was asking about the Vitamin C he is so fond of because I wondered about whether or not you have to space it 2 hours from meds like magnesium and calcium and the answer is yes. The reason being is that it is a detox agent. I didn't know that. If it said it in the paperwork I missed it. The nurse said it is a great detox agent so take as much as you can up to 15,000 mg/day. I think my thoat would not cooperate with that because the pills are huge. I am waiting to see if the powder Vitamin C Tinuviel ordered will work as well. When I go on the next 10 days regimen I can take more but when I am on the clindamycin/quinine I swear there is only a 2 hour frame time during the day to take it. My clindamycin I have to take 3x or 4x a day and the quinine at dinner with a meal so that barely leaves me time to take the probiotic.

I guess the Vitamin C is really good. Have you been following the story about the 13 year old in Corpus Christi who has Hodgkins disease. The parents didn't want to do chemo because they thought she was cured but it came back so the state took custody of her and she has been receiving chemo at MD Anderson. According to today's paper her chemo is over and they are giving her back to the parents and they are taking her to Kansas to do Vitamin C IV to help her recovery. There must be something to this. I am wondering if she is going to see Dr. Jernigan? If so I am sure he will help her.

I wonder if I can get Ronnie to do some relaxing type massages on me. I know I would have to reciprocate. The problem is that my hands are so stiff. My sister insists that when I start the plaquenil it will probably help my hands because it is used a lot for arthritis. I hope so. I miss my crafts especially with Christmas coming up. I could be making money.

Enjoy the hockey game and your night out with your daughter. What a blessing to feel you can do these things again. Have a great weekend.

Maureen





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