On Wed., I started taking Malarone to treat my Babesia, along with what I've already been taking for awhile now, which is 600mg/day of Rifampin to treat my Bartonella and 1,000mg/day of Tetracycline to treat my Lyme.
Several hours after I took my first dose of it, I noticed a decrease in some of my most bothersome symptoms, particularly my brain fog, fatigue, and pain.
I know that wasn't a placebo effect either, although it certainly surprised me!
Several more hours later though, that gradually disappeared, and I started herxing, quite a bit.
On Thurs., when I took my second dose of it, my herxing got even worse, which became very hard for me to tolerate.
I also started experiencing some overwhelming, well-known side effects it can cause, such as dizziness, headache, and nausea.
On Fri., as a result of my herxing still being very hard for me to tolerate, I knew I couldn't tolerate making it any worse and didn't want to take any chances of that happening, possibly by taking my third dose of it, so I didn't.
This morning, I woke up feeling much better though, although I was still herxing, just nowhere near as bad, which I could tolerate, so I went ahead and took my third dose of it.
I was afraid my herxing would end up being like it was on Thurs., which I know I can't tolerate, so I only took half of my dose of it though, just to be on the safe side.
I called my pharmacist first though, just to make sure I could cut the pill of it in half, with my pill cutter, and they said it was okay for me to do so, therefore I did.
It's late afternoon and I'm herxing, quite a bit, but I can tolerate it, as it's nowhere near as bad as it was on Thurs., after I'd taken two whole pills of it two days in a row.
Later this evening, I intend to try to take the other half of my dose of it, but only as long as my herxing doesn't get any worse, beforehand, and I feel like I can tolerate it getting worse, afterward.
I read a lot of posts here about Malarone, before I took my first dose of it, and I've learned a whole lot about it, especially how the antibiotics I'm taking, along with it, supposedly decrease its effectiveness.
My LLMD knows I'm taking all three medications together, yet they haven't even mentioned that to me, which concerns and surprises me, at the same time.
I plan to speak with them about that on Tues. though, when I have my follow-up appointment with them.
Since I've learned that though, I realize I'm knowingly reducing its effectiveness, thus I'm not getting the most out of the dosage of it I'm taking, and in turn, what I've paid for it.
Since I can barely tolerate the way I've taken it today, I'm not so sure I should be bothered by that though.
With me taking the full dose of it, in two divided doses, by cutting the pill of it in half, am I...
Since I'm already having a hard time tolerating taking it, as I've done today, should I be concerned about the antibiotics I'm taking, along with it,
...further reducing the effectiveness of, or creating resistance to, it treating my Babesia?
The antibiotics I've taken, since I've started treating my tick bourne infections, to the best of my ability to recall, at this time, are: Doxycycline, Ceftin, Flagyl, Zithromax, Clindamycin with Quinine, and now Rifampin and Tetracycline, plus Malarone, in that order.
Ceftin, Zithromax, Rifampin, and Tetracycline are the only ones I've taken for over, approximately, two months though.
I believe, as far as I know, anyway, this is the very first time I've ever treated my Babesia, except when, in early-mid 2006, I took Zithromax, by itself, but I don't know if that even counts.
Does the Zithromax, or any of the other antibiotics I've taken, thus far, even count?
Now that I've taken Malarone I can, quite obviously, see my Babesia may very well be causing me a whole lot more issues, than either my Bartonella or Lyme, since I've been treating for those, since late 2005, and haven't improved very much.
Even though I'm herxing, quite a bit, by taking it how I did today, and I've only been taking it for a few days, I'm still seeing some significant improvements, in some of my symptoms, already, which has really surprised me!
For example, my brain fog and fatigue are noticeably better, which I haven't experienced much significant improvement with, since I've started treating my tick bourne infections.
Is that normal or rare?
How can that even be possible?
What significance, if any, does that have?
At this time, I'm choosing to remain optimistic about that, but with caution, since I just don't know enough about having and treating Babesia, to know exactly what to expect, although I'm learning and realize reactions to both differ.
Please don't tell me I need to take artemisinin, along with it though, since I do already know that much about treating it, at least.
I plan on doing that, hopefully, sometime in the near future, but I'm already herxing enough, as is, just from taking it how I have today, there's just no way I can handle that, at this time, anyway.
Does everything I've said seem to indicate, for the most part, I'm severely infected with Babesia, especially since I've herxed so bad, from only taking one pill per day and for only two days in a row of just Malarone?
I'd really like to completely get rid of it, the first time I treat it, meaning this time, if that's even possible!
The last thing I want to do is treat it, then relapse with it, or cause it to become resistant to anything I can take to treat it, thus I end up never being able to completely get rid of it!
I apologize for such a long post and asking so many questions, but I'm still learning about it and what I've learned about it, thus far, really scares me, such as treating it makes you a whole lot sicker than treating Lyme, as well as some people experience many relapses with and have resistant forms of it, thus they never completely get rid of it!
Do people actually get rid of it completely, without relapsing with and creating a resistant form of it, and by just treating it one time?
If so, what is/are the very best way(s) for me to increase my odds of that truly happening?
-------------------- 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
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Talk about coincidence. I just posted a concern about Malarone 20 minutes ago. Maybe members can kill two birds with one stone. I hope you get lots of replies.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
-------------------- 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
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Just bumping this up. Someone has to know the answers on here!! I am intersted by-stander as I posted a very similar question! I don't want the thread lost. Please help. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
-------------------- 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
| IP: Logged |
posted
I have had lyme for 2 years and was just diagnosed with babs in Feb. I was on zitro and Mepron for 6 weeks and I got such terrible leg pain and headaches that I couldn't take a single dose. My LLMD told me to take half the dose until I couldn't do that anymore either. So, he then put me on Malarone and Clindamycin. I also after time started to get the same reaction from Malarone and he again told me to talk half the dose. I took one pill a day instead of 2. When my pain became unbearable he told me to take 1/2 a pill which I have been doing and had to stop that too. He told me to stop taking malarone until my next Babs test came back and as of today my test is negative. (by the way my babs test got worse as I was treating it before it started to get better).
So this is my experience. Two months ago my LLMD told me that my Lyme was is remission. I still am getting sweats/chills, neck headaches and headache so I'm not quite sure what's going on my at least I know that I am going in the right direction. He just started me on some of the Crowden Protocol. I am taking enula, bubur and cumanda to help with detoxing. I am also still on zitro and clinda. Feel free to ask me any questions.
Posts: 19 | From New Jersey | Registered: Dec 2007
| IP: Logged |
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I'm not sure....I just started Malarone (paired with Doxy) about 2 weeks ago and my symptoms have been slightly worse...could be a good sign.
However, I tolerate this med really well. I find it a great alternative to Plaquenil, which I didn't like at all.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
| IP: Logged |
Thank you very much for sharing your Babesia treatment experience with me!
I'm so sorry to hear you've struggled so much with it!
I'm glad to hear your test is negative now though!
That's great your LLMD told you your lyme is in remission and you know you're headed in the right direction!
I hope you can figure out what's going on with you though, as far as the rest of the symptoms you're having!
I hope the Cowden Protocol, along with the antibiotics you're taking, really helps 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
| IP: Logged |
I'm sorry to hear your symptoms are slightly worse, but I think you're right, it could be a good sign!
I'm glad to hear you're tolerating taking Malarone much better than taking Plaquenil!
I take Heparin and I think Plaquenil can't be taken with it, which is why my LLMD has me taking Malarone instead.
I'm not certain about that though, so someone please feel free to correct me if I'm wrong.
If that's truly the case, then perhaps I could quit taking my Heparin for awhile, take the Plaquenil, instead of the Malarone, and see how I do?
I intend to ask my LLMD about it on Tues., when I have my follow-up appointment with them.
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
| IP: Logged |
posted
I started on Malarone 2 weeks ago, 100 mg twice a day. In addition, I've continued with the Bactrim which I've been on for 4-5 months now.
I haven't felt this bad in months, but my LLMD always tells me that's a sign that it's working.
Thankfully I don't have any real bad side effects, little bit of tummy trouble, but nothing too bad. I make sure I take it with a fat, usually almond butter or eggs or something along that line.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
| IP: Logged |
Thanks for sharing your treatment protocol with me!
I'm so sorry to hear you're feeling so bad!
My LLMD tells me the same thing, which is why I'm trying really hard to keep taking it, as much as possible.
Since I've been taking it, I've had to not take it for two days, one here and one there, just to get some well needed relief though.
I just hope my not taking it those days hasn't really affected the effectiveness of my treatment too much, if at all.
I'm glad to hear you're not having too many side effects from taking it!
Now that I've started taking mine with some extra fat, I'm not suffering from near as many side effects from taking it, which is such a relief.
My nausea, which has been my worst side effect from taking it, has gone from severe to mild now, at least.
It's certainly not the greatest feeling, but I can handle it, for now, as long as it doesn't get any worse.
I just hope my taking it with some extra fat doesn't really affect my absorption of it too much, if at all.
From what I understand, I think it's supposed to help, actually.
Right now, I'm just using peanut butter and coconut oil, for the fat.
I'd definitely like to find some substitutes, which don't add too many more calories to my daily diet though.
Hang in there with me!
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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic