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Post by To Kerry on May 5, 2006 9:35:48 GMT -5
This drug is kicking my ass....increase in symptoms to the point I had to stop for a day. I think maybe I worked my dose up too fast. Anyway Kerry...any advice? Biting crawling and all are way up...havent had this that bad for a a while now. I'm trying to stick it out....but hell what a mess Taratula38
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Post by eec on May 5, 2006 15:45:18 GMT -5
well T38 that is good and bad news the drug is working good but your herxing bad thats good to know as im am just tooling along at 95% --but that is getting old because you still need to do everything every day to stay there wash-creams-spray-teas-food-pills-vits- you name it i do it and work a full time job in construction with cummuting time
so i am interested in trying a drug i am sending blood to bowen on may 16th to see where i am on the scale march 2005 was 1;128
as far as yor sit-u-a-tion wild condor says wen the herx is bad back off a little but hang tough and take as much as you can stand it has to get worse before it gets better
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Post by Administration on May 6, 2006 10:27:01 GMT -5
What dosage are you on?.. I started at 150 mgs twice daily and as time went by I increased.. I think after 2 weeks to 150 mgs 3 times a day.. then after 3 more weeks 150 mgs 4 times a day all the way like this up to 900 mgs a day.. The herx itself didnt hit me for a few weeks.. and during that time,, like you. I still had the Morgellons symptoms.. Its when the herx hit hard and knocked me down that I noticed even tho I felt horrible with the herx.. the Morgs symptoms started getting less and less noticable.. Try and take the Rifampin on an empty stomach.. very easy when the hardest of the herx hits because I doubt you will be hungry anyway.. But try and drink lots of water anyway to flush the other stuff out.. And see if you can get down any kind of immune booster during any meal you can eat.. And make sure you are taking the refridgerated acidophilus.. Take the last Rifampin of the day about 8 or 9 at night.. then the acidophilus maybe around midnight.. (you can adjust this to your own schedule.. Im using this as an example).. But stick with it and stay on it all.. Took me about 5 or 6 months on this routine to rid myself of Morgellons.. And it was a hell of a herx during that time.. And just to warn you.. your pee will be a bit orange from the meds so dont panic.. and you will see what you are expelling in your urine.. Like the tiny pieces of hair fibers.. Be patient tho.. And write me at Lymebusters@webtv.net for any help.. Im praying.. Kerry
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Post by Sandra guest on May 7, 2006 9:51:41 GMT -5
Nesseria, is what I think I have, it inhibits the mucous membranes . I feel it is a mutated form of this . I have been reading and reading on the net. It mimics Gonnorea bacteria. Has anyone else found out about this ? Thanks If anyone has a similar find. And fifampin is a drug they use to treat it . Sandra
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Post by guest angie on May 7, 2006 10:01:39 GMT -5
Hope you dont have this Sandra but I see it requires warm body temps to survive. Many of us have abnormal low temps but it may be a similar gram-neg organism. medic.med.uth.tmc.edu/path/00001510.htmThe Neisseria genus consists of aerobic, non-spore-forming Gram-negative coccobacilli which inhabit the mucous membranes of many animals (and humans). These non-motile microbes require a moist environment and warm temperatures (human body temperature range) to achieve optimum growth. An important means of identification of Neisseria species is the oxidase test, for which all members test positive. Additionally, Neisseria grow well on chocolate agar containing antibiotics that inhibit growth of Gram-negative bacteria, Gram-positive bacteria, and molds. Infection by the diplococcoid bacterium N. gonorrhoeae is referred to as a gonococcal infection. Gonorrhea is transmitted between humans through intimate contact of the mucous membrane. This sexually transmitted organism can be carried by men and women for many years without any sign or symptoms. In infected males, the disease is characterized by a urethral discharge of pus and can eventually result in other complications such as prostatitis and periurethral abscess. The incubation period of the bacterium can last from a day to a week. Females with gonorrhea exhibit vaginal discharge, abdominal pain, and abnormal non-menstrual bleeding. Ironically, the widespread use of birth control devices such as the pill has actually increased the number of gonococcal infections in the United States. Use of the pill can lower the glycogen concentration of the vaginal membrane. This environmental change inhibits the growth of acid-producing bacteria, such as Lactobacillus, which are the natural flora of the vagina. The vaginal pH soon becomes less acidic and a variety of organisms are able to grow there. As with most other sexually transmitted diseases, gonorrhea is prevalent in young adult and homosexual populations. This disease may sound really bad, but it is treatable. N. gonorrheae is sensitive to ultraviolet radiation, drying, and antibiotics. Because chlamydia infection is often associated with a gonococcal infection, a regimen of ceftriaxone and doxycycline is used to kill both organisms.
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Post by Taratula38 on Jun 4, 2006 11:34:02 GMT -5
Just an update. Rifampin still kicking my butt. BUT I am now rubbing out of my skin big cocoons of fibers....white and black. Amazed at how much is coming out at intervals.
Every few days now. What does this mean....don't know but with more and more exiting I am hoping this is a good thing.
peace and hair grease
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Post by Administration on Jun 7, 2006 19:33:33 GMT -5
I think its good that all this stuff is coming out.. I remember at first... especially when the herx started, tons of stuff was coming out of me.. especially that sand stuff.. the bed was full underneath me... reallly weird.. Finally I guess it all came out?? But it took about 6 months... Just keep pushing.. if its working.. stick with it!! Kerry
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Post by ruth on Jun 8, 2006 7:46:30 GMT -5
kerry and taratula,
i am starting the rifampin on monday after i get my bloodwork done, i guess to monitor liver function. doc said now, one month, then 3 months.
she also said she is willing to be one of the practicioners that will work with dr. wymore's study coming up. i hope she contacts him. she is a clinical dr. and is she a busy woman.
i am so excited about the potential of killing this stuff. it's hard to separate the morgellons from the lyme within me.
thanks for sharing your information. God Bless us all.
PS: kerry, i can't wait to get enough emotion to get teed again.
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Post by Administration on Jun 9, 2006 19:27:17 GMT -5
Ruth!! I am so excited!! This is great news!! Yes!! I cant wait either! We will form a sick angry woman's club!...lol!! Please keep us updated on what is happening and how you are feeling on the meds... Sending many prayers your way that this will work for you and you will get better too!!! Much love Kerry
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Post by ebgbgms on Jun 18, 2006 3:45:26 GMT -5
Hi everyone, Kerry, I was always suspicious that I did not attack the Lyme and Morgellons hard enough when I was on Rifampin. I know that I did get better, but I also know in my heart I need to do it again. I just feel it. Last week the pediatrician put Charlie (40lbs) on Rifampin. 150mg bid 2 times a day. I haven't started it yet. He is so tired and rundown I have been putting it off. I know I should have called and got him back on zithro while waiting to start the new RX. I guess I will make a decision Monday. I have always known that his joint pain probably has never gone away even though we moved to an apartment that has no stairs (disabled) I found out today that I was right, I ended up taking turns w/ my husband carrying him today at an outdoors event we went to. He is smart, he hates taking the medicine. One thing I do know, I am still very sick w/ Masters-Lyme disease this summer as I was last because I didn't stick with the antibiotics as hard as I should have. What I thought was a bad herx turned out to be minor compared to the real thing. So all of you stay tough and go as hard as you can against Lyme and Morgellons if that applies. Hang in there :-*I hope that everyone who needs this very important antibiotic can get it from a Dr. It is important. Always, ebgb
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Post by ruth on Jun 18, 2006 8:56:15 GMT -5
OMG!!!!! THIS IS KICKING MY BUTT!!!!!!!I DIDN'T LISTEN TO KERRY TO
START OUT SLOW. THE HERX (INFLAMATION) IS UNBELIEVABLE I COULD NOT WALK FOR 2 DAYS. THE PAIN WAS EXCRUTIATING so i stopped to clear the dead to start again slower. my tabs do not split so i'll start on 300mg one time a day.
and so i started out 300mg bid. the orange color showed in my pee.........then.............the inflammation especially in my intestinal hip sacrum area was too intense to bear weight, so for 2 days i was bedridden. it kind of felt like when i had sepsis. the aching sweats,chills.......unbelievable. the bed was covered in the sand like stuff for 2 days then slowed down to normal amount, only it was orange too. how fun to see the drug in my tissue. well i scooped up some and (when i could get up) looked under the scope. hum no fibers sticking off of them so i spritzed the samples with water and put under nonclear plastic. this morning some of the samples are growing, but barely. the spew of the balls are reduced.
i will put a RIFAMPIN continuing album on my photo site
my samples are back to normal now, but i still have residual inflammation that is painful. i think because the gastro said my intestines are full of scar tissue, the die off was too much. i believe the scar tissue to be the microbes doing.
.
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Post by ebgbgms on Jun 18, 2006 14:38:00 GMT -5
Ruth, I had to start out w/ 150mg and move up, just didnt get as high as I should of. U better pulse and go slower it will get better. Good luck! Love, ebgb
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Post by ruth on Jun 18, 2006 18:07:43 GMT -5
correction to my last post.........silly me.......i was envisoning the rifampin as the dulcolax pills. funny.
its actually powder in a capsule so i can divide the dose i absolutely will start at 150mg and work up!!!!
i just get so anxious to get rid of it, i get stupid.
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Post by Administration on Jun 20, 2006 20:24:53 GMT -5
Yes!! Be careful... You want to herx.. but remember that your body is already weak from the disease.. I started on 150 mgs .. twice a day.. 1 in the morning and 1 about 7 pm.. acidophilus before bed.. took about 6 months to work up to the 900 mgs I was taking when Morgellons stopped for me.. Oh yeah.. I sure remember the herx.. It kicked my arse too! First for me came the fever and aches.. like intensified 5 times what they already were...night sweats...then the pain and inflammation... Man oh man..dont ever want to go back there.. but I would if I had to ya know? Already had what I thought was the worst pain in the muscles of my back I had ever had.. then with the herx.. felt like I had a broken back.. Hope you guys have some adequate pain pills for this.. I needed them.. Just glad you are feeling something and Im praying this will help you... Ride the herx train.. what a horrible deal eh? We ride the herx train at the same time as the Lyme rollercoaster... Crazy how this all works... But God help us...if it will work.. its worth it... Im stuck with Lyme.. but to be rid of Morgellons... its livable..huge...no more biting and scratching.. the horrible crawling... Geez.. lets all pray for each other that this will work for everyone who tries is.. Im here if you need me...remember that... Kerry
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Post by Administration on Jun 20, 2006 20:29:09 GMT -5
Glenda.. Try to stay with it if you can.. I think you can do a smaller dose but just stay on it a lot longer...dont see why not... Be careful of the herx is all.. its always ok if you feel its too much... its ok to back off as you need your body healthy enough to endure the herx... Write me anytime you need me.. I am always praying for you and Charlie.. We will all get thru this together... We are a family now.. remember that... Much love to you.. Kerry
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Post by ruth on Jun 27, 2006 16:31:44 GMT -5
just for the record.........................
it appears i was getting ready for the first "hatch" of the year'
when i first started the rifampin.
i restarted at 300mg. pulse every 2 days 600mg. i'm already at 600mg daily with no problems.
i hope this is not just in passing, but, my head has less pressure and i do not wake up exhausted lately. i love it.
lots of skin stuff happening. i am unable to take pics now as my life line is gone. it froze at the end of cliff on rense last week, and there went my digital scope.
i'll check in a couple times a week. i am using the unemployment computer.
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Post by mikey on Jul 5, 2006 9:30:28 GMT -5
I have seen many a posts on lymenet.org that state that after rifampin the crawlies went away and never returned
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sondra
Full Member
infected since october 1999
Posts: 230
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Post by sondra on Jul 8, 2006 2:48:07 GMT -5
Hi Kerry and taratula..Is the Rifamprin the med used to fight the co infection babaseosis? I have been put on Mepron and it has been hell..I had to stop because I had a psychiatric episode ! Nothing I have ever had in my life..I t was Horrible lots of panic It was like Iwas drunk..but not in a good way terrible. mood swings. I wish you luck on this med can anyone tell me more about the Rifampin? Good luck to you Ruth also. Thank You Sondra
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mari
Junior Member
Posts: 58
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Post by mari on Jul 12, 2006 22:49:56 GMT -5
I think after reading these posts I am on the wrong meds. I have been taking the Bactrum DS and Cipro and barely hanging in there the past year and never had a herx reaction. I am going to try and get the rifampin (sp) from the doctor I have now and hope he will give it to me as I can't afford to travel anywhere right now. My son isn't as bad as me so he might even have better luck with it. Ruth, glad your feeling better. Hugs, Marilyn
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Post by glennb on Jul 13, 2006 1:59:56 GMT -5
Is anyone taking anything with the Rifampin? I have been on Doxy and Albendazole for years, conditon improved but then progress leveled off and the last two weeks I have been significantly worse. I wonder if I should switch to Rifamprin.
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