char
Frequent Contributor (1K+ posts)
Member # 8315
posted
My daughter is starting her 3rd round of IV abx next week.
She took a month break from the IV (yeast rash, severe itching)
We thought she was sort of "going down" after 1wk, so we went ahead and tried the oral. Dr. had given Rx and choice....
Her digestion was a mess after 3 days. I had been trying to start slow and ramp up abx. We were at about half the recommended dose the third day, when it became obvious we should call it quits.
The IV abx have been helping her tremendously, so we feel we have a good plan for next 4mos or so.
But what about the stage where most come off IV and do orals?
She had her gall bladder out one yr ago and has enjoyed very slow, but steady improvement with the acid reflux and pain after eating. So we hate to interfere with this as it is so important to quality of life-as many of you know.
Have some of you had improvement in stomach over time and with treatment to where you could take orals?
My real sympathies to you because I am suffering with the same thing! I'm supposed to start a different oral abx tomorrow (Flagyl and heavy doses), my esophagus is a mess and I'm scared silly. I don't think I can do it!
I have another ongoing medical condition in my eyes and I need to take a doxy abx for that. I know I won't be able to tolerate all this because of my entire digestive tract, which has always been problematic. I don't know what happens to chronic Lyme patients like us who can't tolerate abx. Lyme patients who can take orals at least have a fighting chance. What happens to the rest of us? Anyone have any answers?
Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
There are many options to abx. Alternative treatment can be as effective, even more effective for chronic lyme.
Stopping abx is not the end of your world. I know because I've experienced it. I remember over 3 yrs ago when I was of the opinion that abx was how you healed from chronic lyme, I was wrong.
There was a time when I laughed at some of the crazy ideas I was reading on this site. Come on, coffee enemas!!!! These people are desperate. yes, they were and I became one of them. 3 yrs of abx and I was dying a slow death.
Start reading threads that are about alternative thinking. Rife, herbs, supplements, dental issues, detox.
Oh yeah, by the way, today I'm not dying. I'm starting to live a somewhat normal life. It's a celebration and I give thanks to my God always for opening my eyes and my mind to alternative thinking.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Talk-
I hope you get a good solution. Feeling for you! Have you looked into bicillin? We are not there yet, but it is in back of mind....
Map-
A thought provoking answer. such a paradigm shift.
I do joke that I have been "greened" with organic food, sandles with socks and no makeup. Funny, I am changing and it is God as I didn't expect to be on this path, but I am enjoying this taste of a different way of life.
So, I want to look into the alternative therapies and hope to study more as I get my brain back!
Thanks, guys.
Posts: 1230 | From US | Registered: Nov 2005
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posted
Char,is she takeing probiotics?If not,give it a search. Alan
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
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I am on bicillin shots already. The Flagyl is an additional abx. I just took my second dose of Flagyl today and I'm holding my breath- and my esophagus. I'm waiting for the herx, which will probably be pretty big. My LLMD just decreased my dose and is pulsing me so I'll see what happens. At one point, I considered using the Rife machine which my chiropracter recommended. I was talked out of it by my LLMD who is a leading Lyme doc. I was also made to understand that it cannot be used together with abx because it can make the Lyme more resistant. Good luck to us all! Lymehead
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Char,
After only 3 days, I would think it could actually be that the abx is killing bacteria in the digestive system. This could be a good thing.
I have found different abx are tolerated by different people differently. So, she may do better on another abx.
Also, is she taking with food? When abx bothers me, I usually eat lots of starch until my stomach gets used to it. I know it's not good for yeast, but it can make it much more comfortable.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Char, I really feel for your daughter. As you know I'm dealing with, and have been dealing with, a lot of stomach issues. Before my latest huge crash involving my GI system my stomach was actually improving and I was able to handle more oral meds. This was after almost 6 months of IV treatment but it was really the last 3 months of IV Primaxin that made a difference for me. I was able to tolerate oral Tinidazole, not at full strength but tolerating it at all was a big step.
So I think it's possible to see progress in the stomach area and be able to tolerate orals after a while. It depends on whether the nausea and stomach problems are a Lyme symptom or just how your daughter's stomach is. If she continues with IVs for a while longer, though, and then tries to slowly add in an oral antibiotic to the IV abx and see if she can handle it. I mean down the line a way. If the IVs are helping her, keep on with those!
I'm rambling and I'm not sure I'm making much sense so I'll stop. I hope your daughter continues to improve! What IV is she going to be on now? Still Clinda and Rocephin? I'm hoping to be in a place where I can go back on IV Primaxin sometime in the next month or two but first I need to get to a place where I can semi-eat, stop losing weight, and become semi-stable.
I have experienced the same thing. Until this past fall I had been on Nexium for 4 years and had constant burning in my throat, abdominal discomfort, and I either had diarrhea(?) or was constipated. I couldn't take oral abx for more than 3-5 days, it just made everything worse. I also had to have my gallbladder removed. My wonderful doctor found these German homeopathic liquids...and they changed my life. I haven't had diarrhea for over 5 MONTHS!!! And I have had NO need for Nexium. I also took Ketek and oral doxy for significant periods of time and I was fine. It's been a complete turn around, and one of the best things I've ever done. If you're interested at all I can give you the info. Unfortunately they have to be ordered by a doctor, but I'm sure any LLMD would be open to atleast reading the info. or trying them out! Let me know, and I hope your daughter finds some comfort!
Kelly
-------------------- "Faith is the confident assurance that the things we hope for will happen; it is the evidence of things we cannot yet see" - Hebrews 11:1 Posts: 3 | From Virginia | Registered: Oct 2005
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JimBoB
Unregistered
posted
Hi CHar:
I had terrible stomach pain and nausea for about two weeks before I started treating my Lyme with herbs last fall. I don't know IF it was from Lyme or the 1000mg of Vitamin C I took each day, OR both?
Then like I said I started the herbs, very slow at first because of the pain, but ramped up till I am at the maximum now, of many herbs.
I was able to tolerate the herbs fairly well, but still had a little pain. THEN I started Tetracycline for a month and the pain became unbearable at times. (Especially if my stomach was empty).
THen I discovered C-Salts from nutri.com and THEY helped considerably with the pain. But didn't get rid of it.
I quit the Tetracycline for 7 days, and the pain left. But then I started taking doxycycline for 28 days. However, IT too got bad after a couple of weeks and by the time I got to 24 days I couldn't stand it any longer, so STOPPED the doxy.
It will be a week tomorrow that I quit and my stomach has been pretty darn good the past few days. I am still on the C-Salts and the herbs. But NO abx.
I might add that the herbs had made the Lyme symptoms disappear BEFORE I started the abx. BUT the symptoms returned quite bad when on abx, along with the herbs. Now, yesterday, they have finally left again.
NO MORE abx for me. I will GLADLY stick with the herbs from here on out. I feel like a human again.
So, IF she wants to feel GOOD. Try stopping the abx and go on herbs only.
Read Stephen Buhner's book, Healing Lyme and apply it. I think you will be very pleasantly surprised. Wouldn't you rather have her at 90%, rather than 40%?
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