to mikie; doxycycline for mycoplasma..

Discussion in 'Fibromyalgia Main Forum' started by jan a., Jan 31, 2003.

  1. jan a.

    jan a. New Member

    dear mikie, a short while back I had a post about my mycoplasma infections (2) and hhv6...I had said I still was so sick. I stated that I took 100 mg. of doxycycline per day for it. you had said you take 200 mg. per day.My question is how long have you been on that dose and have you had any problems with your kidneys from it? does your dr. test you for kidney function? I had one dr. tell me not to take that dose because of possible kidney problems from it. I want to go on and try it, just wanted to hear from someone who has been on it for awhile and their experiences....I do not have a history of any kidney problems....do you feel better on that dose? I have been taking it for 2 years and cant go off it or I get very sick but dont feel well enough on what iM taking...thankyou for any input you might have from your experience with the drug...Ive been on famvir for the hhv6 (dont remember if you have that) and dosent seem to help...wrote to herpes diognostics (Edited to remove URL) and they said famvir and zovirax were ineffective..they suggested transfer factor...Im a little leary of taking it...real sensitive to many meds...dont know where to go from here.....sorry to go on so long....I am 57 and live in florida also, near clearwater...thanks again...love jan a.
  2. Mikie

    Mikie Moderator

    I have been on the 200 mgs a day for well over a year with no kidney problems at all. My doc doesn't test for kidney function, but judging from how much I pee, I don't think it's a problem.

    Dr. Nicolson hasn't ever mentioned this as a side effect. The 200-300 mgs a day is what he recommends.

    BTW, Today, I stopped my Doxy to try to cycle off of it. I have felt fantastic yesterday and today, so I though it would be a good time to see if I continue to feel well after discontinuing the Doxy. I should know withing 3-4 days if my symptoms are returning. I would love to finally get off of them, but not until the wee beasties are dead and gone.

    Love, Mikie
  3. jan a.

    jan a. New Member

    thanks to both of you for you great information on the subject of doxycycline....I am going to try the higher dose myself...I dont see my dr. until the 14th but he will okay it Im sure....Ive been on zithromax because I have been feeling so sick again even though Ive been on the doxy all along...dont want to keep taking zithromax for a long time...afraid of building resistance to it...will try that website ..thanks jelly....glad you were around mikie this weekend....youve both been very helpful in your many posts..I get so frustrated and feel theres no hope sometimes and I read about others and it gives me hope...love you all...jan a.
  4. Mikie

    Mikie Moderator

    The one thing we must never do is give up hope. I fully expect to get to 80 percent of what I was before I got sick 12 years ago. If I do better than that, great! If I can get to 80 percent of the dynamo I used to be, I'll still have energy and strength to spare.

    I haven't gotten this much better on one treatment alone. It's a little of everything which seems to work for me: the Guai; the Doxy; the Klonopin; diet, low-carb/high protein; learning to rest and relax; Tai Chi, Yoga, and other exercise; and using my zapper. I've found all this here on our board,and I researched, and through trial and error, found what seems to be working for me.

    There are still all kinds of things I haven't even tried yet. I take it one step at a time and have learned to be patient (well, compared to how I used to be :) There's a lot to be hopeful about. Research is turning up new things all the time. I expect they will unravel the mysteries of our illnesses and produce a cure, but I'm not waiting for that. I have taken things into my own hands and am responsible for my own treatment with my doc's help. This keeps me in control and empowered and keeps depression at bay.

    Love, Mikie
  5. jan a.

    jan a. New Member

    I know that giving up hope is self defeating...sometimes it just seems to be so overwhelming it cant be helped. I dont have fibro so bad, just areas on my arms that are tender to the touch and I get terrible aching in my legs especially, like the flu. I cant imagine the excrutiating pain some have all the time and must take strong pain meds all the time...I have cfids more and experience such extreme fatigue and sickness somedays I can hardly function...cant seem to do much of anything anymore...even housework is too hard especially vacumning...cant imagine going to disney world or any place I would have to walk alot...cant stay out in the sun for long anymore in the summer because I get abnormally heated up and takes a long time to cool off and it couses a bad flare up afterwords....cant work at a job, going grocery shopping leaves me tired the rest of the day. have to take a nap everyday...feel like a 90 year old must feel...its so hard to stay positive...my husband and I used to go out in our boat fishing all the time for years but we finally sold our boat after he had cancer to pay bills...didnt matter , I couldnt go out anymore in the sun like I used to and we wouldnt use it anymore with the way our lives are now...I know Im just one of thousands of others like me...this is just so hard to believe how its changes our lives...I have constant heart irregularities and I was told by drs. its from my illness....Im so happy for you that you have found success...I hope I get to that point someday...I started all this in 1994 after an illness but it would come and go...then in january 1999 it hit me like a ton of bricks and Ive been sick everyday now since then...sure hope that cure comes soon for all who suffer...thanks for all your kind words and encouragement...its hard to find someone to talk to who understands as you must well know...I know my story is the same for so many, some better some worse...we really do lose our old self...thanks again..love jan a. (complain complain) sorry!
  6. Plantscaper

    Plantscaper New Member

    Dear Jelly, I e-mailed the Road Back Foundation about my mother and hope they will respond..didn't see any messages on their board about my mother's worse disease, Rhuematoid Vasculitis, but it is autoimmune and it is caused by RA. I found a good article on Hypercoagulation in CFS/FM..but had a bad migraine today so it didn't get as much done..read an article on Klonopin and the Brain based on Cheney's views..heard the negative about Klonopin but Cheney sure does feel that it is important...What are your views on the subject? I can't afford to lose anymore brain cells, myself. Even driving a car is difficult and I have a Master's Degree...can't work in my field ANYMORE!! I have spent most of my time taking care of plants, hence, the name "Plantscaper", selling and educating people about them. I have found it is the best work for me at this point..having this disease is bad, but having my mother almost fatally sick is beyond words...She is my best friend and greatest supporter...this is her birthday today! Well, wanted to touch base...you seem like a great person, too. I can't thank you enough... AMELIA
  7. Plantscaper

    Plantscaper New Member

    I have that book held for me at the library, but we had a snowstorm, today, and I'm staying at home..don't need another accident.. have a lot of work to catch up on, too, and when I feeling good enough, got to take advantage of it..have about 300 indoor plants to water..I envy being able to grow so much in that California weather..I have heard, however, that you may develop a water shortage because you depend a great deal on Colorado's water-will that affect you?! Sometimes, it takes a good while for my physician to get back with me..She's busy and only works part-time. I'm working on all of your suggestions and thank you for caring... Have you ever been to the Huntington Botanical Gardens near L.A.?! AMELIA

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