On the 21st I took two, but ended up having to only take one on the 22nd, as it was just making me herx way too much.
If you are taking or have taken it, I'd really like to hear about your experiences with it, both good and/or bad, if you don't mind sharing them with me!
So far, I've mainly had a lot more pain and fatigue, along with some disorientation and dizziness.
From what I understand, it doesn't treat lyme very much, but could be a possible cyst buster for it.
Also, it mainly treats Bartonella, Erlichia, and Chlamydia Pneumonia.
Please correct me, if I am wrong, as I'd really like to know.
Thanks!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Cobweb
Unregistered
posted
I'm taking Rifampin-for Bartonella.
600mg in the morning on an empty stomach.
I get a dull headache and fatigue. I believe this is due to my body's adjustment to the drug and not a herx.
Thank you, very much, for sharing your experiences with it with me!
I don't know how you manage to take that much and not herx really bad!
I do have a lot of chemical sensitivities and tend to herx really bad on any antibiotic I take, though!
I guess, it's making me herx really bad, because it's treating some really bad infections I have, which I, definitely, need to treat!
Hopefully, if I can stick it out, when it's all over with, then I'll feel a lot better!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Cobweb
Unregistered
posted
from what I have read-it is a good idea to ramp up slowly if you have a really strong reaction-so follow your instinct.
I was going to add to my post about the emotional issue-I was sitting in a class and had to leave because I could feel a crying jag coming on. I went to the bathroom and just wept, got myself together, washed my face with cold water and went back to the room.
The following week I was in the same class and not feeling nearly so vulnerable emotional. I wondered why the difference-perhpas by then my body had adjusted.
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Cobweb
Unregistered
posted
from what I have read-it is a good idea to ramp up slowly if you have a really strong reaction-so follow your instinct.
I was going to add to my post about the emotional issue-I was sitting in a class and had to leave because I could feel a crying jag coming on. I went to the bathroom and just wept, got myself together, washed my face with cold water and went back to the room.
The following week I was in the same class and not feeling nearly so vulnerable emotional. I wondered why the difference-perhpas by then my body had adjusted.
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Thanks for the helpful reminder, as that's, exactly, what I do with each and everything I try taking to treat my infections!
I'm so sorry you had that kind of a reaction to it, but glad to hear it got better for you!
Looking back, I do think I was feeling somewhat depressed yesterday, but am feeling a lot better today, so maybe my body just needs some more time to adjust to it too!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I have been taking rifampin for bartonella.
I ramped up slowly and, if I recall, initially, I had a really nasty reaction to it: I was emotional my numbness was exacerbated (in fact, new parts of my body became numb) I experienced sensory super-sensitivity My anxiety was heightened.
As I recall, these symptoms lasted a few days then subsided. Some of them never returned, and others have gradually diminished over time.
I've made a LOT of progress on rifampin and consider it a vital part ofmy treatment regimen.
Posts: 2549 | From never never land | Registered: May 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Jennie, rif was a killer abx for me too. It was one that Dr C put me on and I believe it was the last abx I attempted.
By that time they all seemed to keep me in a constant state of herxing. Back then I thought it was bart related. Now that I'm doing all this reading on chlamydia pne, it's back to the drawing board on this one.
I was at the end of rope by the time rifampin started (3+ yrs) and that's when I started looking outside the box.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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Thank you, very much, for sharing your experience with it with me!
I, truly, appreciate it!
I'm sorry to hear you've had some bad reactions to it, but glad to hear they've gotten better for you!
It's very encouraging to me for you to let me know it's helped you so much!
I'm hoping and praying it does the same for me, if I can just stick it out, which I plan to, as long as I possibly can!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm so sorry to hear it treated you so poorly too and put you at the end of your rope!
I seem to stay in a constant state of herxing too, no matter what antibiotic I try taking!
I've been so sick for so long, though, I, firmly, believe I have a lot of deep, untreated infections, which is, most likely, why!
I got a really bad case of pneumonia a year ago this past August, which it may be treating, along with some of my other infections, thus my issue with not being able to tolerate a lot of it, right now!
I think it's good your doing more reading about the pneumonia, as it can be another problematic longterm infection, along with lyme, which has to be treated aggressively and for a long time too, from my understanding!
I think it's always good to think outside of the box, which is what I'm starting to do now too!
I hope you can find the answers you need and soon!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Rifampin, as I've heard, is a very, very strong antibiotic.
I'm taking it for Bartonella. Some people have terrible experiences with it, but I really haven't. I've been on rifampin now for about a month and haven't experienced much except for feeling better. I still have some bad days, of course, but overall, I feel like it's helped me a TON. I used to have dizziness/lightheadedness ALL the time. I don't have that now (*knock on wood*) and that was one of my worst symptoms.
The only thing I did notice with Rifampin was that I used to have shortness of breath. I still do, but it's changed so that when I do have it, it's at one time and not throughout the day.
I've also had a couple times what seems to be a panic attack, but I'm not sure if Rifampin treatment has brought that out or not.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Thank you, very much, for sharing your experience with it with me!
I'm encouraged to hear it has helped you, despite a few problems you've had with it!
I hope, if I can just stick with it, then I will get the same results!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I've been on it (split dosage 300 mg/2x day) for 5 months. I think I will start taking it all in the AM, based on what I've read here.
I have noticed some really great days on Rifampin, but some really bad problems with anxiety as well (subsides by the evening).
Haven't really had a problem with side effects, except tremors, all over, which are frustrating.
Posts: 3528 | From US | Registered: Apr 2007
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I might be starting it soon, I'm encouraged to read so many mainly positive responses.
Has everyone found it turns your pee and tears and sweat orange though?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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I'm curious as to why you think it's a good idea to take all of it in the morning?
I'm glad to hear you're having some really good days with it, despite you having some really bad problems with anxiety with it, but glad to hear it subsides for you, by the evening!
I've started having a little bit of anxiety with it now too, but it isn't too terribly bad.
I hope and pray it stays that way too!
I'm sorry to hear you're experiencing some troubling tremors with it, which are frustrating you!
I hope they get better for you and soon!
Thank you, very much, for sharing your experience with it with me!
I, truly, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm encouraged to read so many mainly positive responses too!
It is turning my urine orange, but I haven't noticed it doing that with my tears or sweat, though, although it can, as it sounds like you already know.
It could be I'm just not taking a high enough dose of it yet for it to do that, though.
I intend to double my dose of it tomorrow, though, so I shall find out soon whether or not doing that will make any difference or not for me concerning that.
I hope, when and if you decide to take it, it works well for you without it causing you too many unbearable side effects!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Packs a major whallop but helpful
Do a search, tons of Rifamp info/posts on this site.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Well....I guess I should tell you that I had a very negative experience with Rifampin.
Here are the basics from a post of mine in January, 2006:
"It's for bartonella [and yes, TB]. I took it and the side effect I had was swelling of the brain. I'm not kidding. I took one pill for each of 5 days and had a headache from H*** the whole time.
I stopped the med and it took 3 weeks and another abx to reduce the swelling and relieve my headache. I had it 24/7 for the entire time. Just say the word Rifampin and I kringe."
I only took 5 pills! I THINK they were 300mg ... but could have sworn it was even less than that. What's the usual mg size?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
Yeah- you'll be pooping carrots!!!!
My dose is 300mg per capsule-two capsules in AM on an empty stomach.
Rough time in beginning- LLMD gave me permission to split dose-AM/PM . But once I started eating for the day I never had an empty stomach for the rest of the day-grazer that I am.
So I had to go back to 600mg first thing in morning. I get a low level dull headache-just enough to annoy me.
Mino and Doxy gave me the Headache from Hello-so I stopped them on my own-afer two days. I am dysfunctional enough-I don't need meds to do me in completely.
Inspite of the headache-Rifampin seems to help my mood. I've been on it two months.
Thanks for the suggestion to do a search, which I, actually, already have!
I was just wanting some more people to chime in, is all!
Thanks for sharing your experience with it with me!
I, truly, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I hope, when you start taking it, next week, it goes well for you!
I'm intersted in hearing how you do with it!
Yes, it is really encouraging!
Yes, from what I've read too it is very powerful!
I wait about an hour after taking it, before I eat, but the information I got from my pharmacy says if it upsets your stomach, then you can take it with food.
So far, I've had a little stomach upset with it, but nothing too terribly bad!
I think it depends on what you eat as to how long it takes for your stomach to empty food.
I'm not aware of it reacting with anything I take, right now!
I do know it causes more rapid excretion of valium type drugs,though!
You should check with your own pharmacist about any of your concerns, before you take it, as I doubt you take the exact same medications I do!
Thanks for being glad I'm able to take it!
I'm, really, surprised, myself, it's not treating me worse than it is!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Thanks for sharing your experience with it with me!
I, truly, appreciate it!
I'm sorry to hear you had such a tough time taking it the first time you tried it!
Congratulations on your remission!
I hope and pray it helps you a lot and treats you much better the second time you try taking it!
I'm inclined to ramp up with any antibiotics I take too and my LLMD doesn't have a problem with it!
If I didn't, then I'm afraid I'd herx so bad it would, actually, set me back, instead of help me!
Yeah, you have to love the orange color it gives you!
It will get all over your light colored clothes too, which you may not be able to get out, so you may want to keep that in mind!
I haven't came across a lot of food and medication restrictions related to taking it, but if you come across something important about that, then please feel free to share it with me, as I'd sure like to know!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Gosh, I'm sooooo sorry you had such a horrible experience with taking it!
Bless your heart!
Thanks for letting me know about it, though!
So far, I'm experiencing a minimal amount of side effects from taking it, including a mild headache!
I plan to increase my dosage soon, though, which could change that, but I, sure, hope not, since I'm already seeing some improvements in my cognition!
I'm only taking one 150mg capsule per day, right now!
I'm not sure if that's the usual mg size or not, but my LLMD wants me to try to increase my dosage to a maximum of four of those per day, which is equal to a total of 600 mg per day.
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Hahaha! Yeah, poop, like you described, seems to be my norm, since I've started taking it, too!
My pharmacist said it's okay to take it with food, if it upsets your stomach, although I don't know if an LLMD would agree with that!
I have a headache now, such as you described, too, but it's manageable!
I haven't tried taking mino, but doxy gave me so much pressure in my head I had to stop taking it!
I'm sorry to hear you had such a hard time taking them!
Like you, I need enough of the meds to help me, but, like you said, not do me in completely!
I'm glad to hear it's helping your mood and you've been able to tolerate it for two months!
Thanks for sharing your experience with taking it with me!
I, truly, appreciate it!
I hope it continues to help you!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm sorry to hear you reacted so poorly to taking it!
I've read where it is tougher to take it again, but I wonder why that is?
I took Levaquin and it nearly killed me, so I will never touch that family of drugs again, for sure!
So, like you said, everyone is different, but I think it's good to get some sort of consensus about reactions to taking antibiotics!
Thanks for sharing your experience with taking it with me!
I, truly, appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Jennie, forgot to mention, my LLMD said it was being used in trials for Irritable Bowel. I found it helped my GI system & I was going #2 more regularly.
btw: Don't let the Orange pee or carrot logs freak U out. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Interesting Foggy. IBS, that's what my gastro doc is calling my symptoms. Being labeled as IBS is not good enough for me. I want to know why I'm having this problem for the last 1-2 yrs, not a symptom of unknown?
I tested negative for bart Igenex when I was seeing Dr C. But with everything I've seen and read the last few years I seriously doubt I'm bart negative due to some others sx I have had for 7 yrs.
I have bone pain in both my shins and pain in my long bone in my arms. This pain is entirely different from lyme arthritis pain. It also comes on only in cycles.
I've read that bart effects the gut more so. Tick bites in the last couple years could of been a another bart infected tick????? I wonder if the bart bacteria is just as difficult to kill off as the borrelia bacteria?
Pam
PS Jennie, my troubles with illness came from Western Ky and a lake home at Nolin.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I started Rifampin, 600 mg, 5 weeks ago. It has reduced my twitches and jerking. I think I have more energy. I think I'm beginning to sleep better.
I can't say I have had any particular side effects except for increased anxiety, but it is not unbearable.
Of course I have all the orange stuff happening! And I do have alot of trouble finding a time when my stomach is empty. My LLMD stressed EMPTY to me, so I'm now trying first thing in am and then in afternoon a few hours after lunch. I may have to go to all 600 in the morning when I wake up.
Rifampin seems to interact with everything, what a pain!
Good luck to you Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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Thanks for leting me know that, as I had no idea it could help with that too!
I have some of that also, so if it helps me in that way as well, that would be just wonderful!
I'm trying to overloook the orange issue, as much as I can!
I guess I can just think of it as being the color for the season! LOL!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm sooooo sorry to hear you have IBS and such pain in your shins and arms!
I've had IBS for many years and have never figured out why, either, but, like you, would sure like to know!
Ever since I've had my gallbladder removed, my case of it has only gotten worse too!
One thing I've found has helped me some is Questran aka Cholestyramine, so you might want to ask your doctor about trying it, sometime!
I hope and pray geting rid of Bartonella is easier than getting rid of Borrelia for both of our sake, as well as the sake of others, who have both infections!
I do belive I got my lyme disease in Western Kentucky too, although I'm sure you already know they say we, supposedly, have very little to none of it here, but I'm sure, like me, you know that's just not true!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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I'm having some increased anxiety from taking it too, which I always have when I herx anyway, but, like your's, mine's not too bad!
Yeah, you just have to love the orange side effect taking it has, for sure! LOL!
Even though my pharmacist told me it's okay to take it with food, if it upsets my stomach, it's not really doing that very bad!
So, I'm going to start taking it on an empty stomach, just to make sure I get the most out of it, even though my LLMD didn't stress that, like your's did!
If it ends up upsetting my stomach too much, I can always start taking it again with food!
Yes, having to take it on an empty stomach does make it hard to figure out when to take it, so, like you, I may have to start taking all of my dose of it in the morning too!
When you said it seems to interact with everything, which is a pain, what do you mean by that?
What does it interact with, which I should be concerned about?
I haven't came across anything, which has indicated that, which is why I'm asking you to share with me what you know about it in that respect, if you don't mind.
Thanks for the good luck wish with taking it!
Good luck to you with taking it also!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Jennie Maybe I should not have said Rif interacts with everything. but I cannot take it near my doxy, or my thyroid medication, or my supplements and vitamins... Kris
Posts: 520 | From Maryland | Registered: Jan 2007
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I don't take doxy, but I do take the other things you mentioned you take.
How come you can't take it with them?
How long after taking it should you wait to take them?
This sounds like something I need to know, so if you wouldn't mind to let me know, I'd sure appreciate it!
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Jennie, I am embarassed to tell you I don't know the answer! These are just the directions I was given. I think I am tired of trying to understand everything Anyone else know?
Posts: 520 | From Maryland | Registered: Jan 2007
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Maybe someone else will come along, who can tell us more!
Anyone here know?
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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