added tindamax last week

Has anyone taken a cyst buster drug?  I just completed a 3 day course of tindamax and have strange headaches and achey (achy) body, esp my lower legs and left shoulder that feels like I carried something around all day.
Two weeks after the tindamax, I am to stop my ceftin and see how I do off all meds.  I will admit I am worried about not being symptom free for 1 full month while on antibiotics.  It has been several months, but I  fought for so long (2 1/2 years) for diagnosis and treatment to feeling the treatment is definetely working to letting my body clean up the rest or take a break and heal the rest of the way.  Sorry I am rambling on, brain fog is also increased today.  

Need some feed back from others who are now in the after treatment stage.  Dr said it could take another year before I feel myself again.  It's a wait and see process.  

[wonko]

I was on plaquenil, which I've read described as a cyst buster.  I was on mino and zith at the same time.  It caused me a great deal of fatigue, even as I reduced the dose, and I ultimately had to stop taking it after about 1 month.  

Of course, I have no idea if the fatigue was from cyst-busting properties, or simple an intolerance in me.  

I'm not in after treatment yet, but I'm at about 8 months into my initial treatment.  My case was undiagnosed for at least 1.5 years.  I have ups and downs, which I guess is better than all downs!

Is it part of your plan to resume meds if your symptoms return?  

Good luck.

[JackieCalifornia]

I was on Flagyl and azithromycin together.  Flagyl is the 'cyst buster' part.  I hear that it is rough on some people, but I did very well on it (and if anybody's going to have a hard time with meds, it's usually me).

I had to stop taking abx for other reasons, but I hope to go back on the meds at some point.  I had been on other abx before that too and had already started to improve, but with the Flagyl/azithromycin combo, I was doing wonderfully.  

With the symptoms and abx tolerance different for everyone, it's hard to say what to expect.  Some things work for some of us, not for others, it seems.  It did take me quite some time to get that result from abx of various kinds, tho.

Don't lose heart!  (...but call your doctor if you're concerned.)  Anxiety was a huge part of it all for me, and worry.  

Take care.

[Jena906]

Thanks for the info.   The id dr I was seeing said to call if questions or problems, but for now I'm considered done with treatment.  They said 8 months is a long time for the body to be on antibiotics, but I was doing fine with my blood test for any damage.  However I was at a parade and got the bright red nose and red arms due to doxy, so they felt they better stop that and keep me on ceftin for 2 more weeks.  I live in minnesota and have tried to find a llmd,  who would be reasonable,as I am still making payments on mri's and other tests that are all a part of pre diagnosis that we all have been through.

Jackie,

I was wondering why you had to stop antibiotics and after how long of being on them did the dr say enough?  How did you feel after stoppong the antibiotic.  I have noticed within the same week of stopping doxy 200mg bid that the horrible fingers and leg acheiness (sp), balance problems started full speed ahead.  I am telling myself it was from the tindamax (cyst buster) and it will go away (one can hope ;-)

[JackieCalifornia]

Hi --

You asked why I stopped taking abx and how I felt --

I started abx in late 2007 and took them for 9 months.  Then I had some side effects (swelling) that may have been because I wasn't taking supplements I should have to keep my body chemistry all in balance.  The dr never told me what he thought the reason for the problem was.

So I took 2 months off abx, and then started new abx (a cystbuster and a regular abx), which I lasted on for 4 months.  I was doing REALLY well, but had a reaction to the probiotics I was on.  I was accidentally taking too much of them and am still dealing with the problems that resulted (a big yeast infection).

After almost 3 months off abx, I think my Lyme symptoms are not particularly a problem and seem to be related to the yeast infection instead.  But it's hard to tell.

When I first went off the abx, I didn't have symptoms pop up like yours seem to have, but everyone is so different!  

Am I cured of Lyme?  Don't know.  Probably not, and I'll go back on the abx as soon as I take care of the yeast infection, if I can and if I need the abx.  

So I have a strange situation, and it's hard to draw any lessons from it.  Not sure that helps you -- sorry!

[Jena906]

Good morning,

Thanks for your info.  I am better then I was and stronger mentally and physically then I have been in 2 1/2 years, so I  am glad I did the antibiotics for as long as the dr allowed.  8 months, I had read somewhere the dr's want you sysmptom free for 1 month, that is were I get nervous about ending to soon.  I am glad to know one can restart antibiotics again and seem to have no set backs.  

thanks again for the info.  

How did the probiotic affect you?  I was told by my ID dr to much can not hurt you????  It sounds like it did you.
I take one by Energique called High Delivery Acidophilus.  Then I have a bowl of van yogurt with berries/banana's.
Then some Kefir probiotic (a cultured milk smoothie) So far so good.  The dr's however seem to worry that you keep up on the good bacteria and now I see why with your situation.  

[JackieCalifornia]

I'm glad to hear you are feeling better.  I too was worried when I went off abx that the symptoms would come roaring back, and I do still have some symptoms, but after being sick for soooo long, it gets hard to remember what it was like back at the beginning.  I know I was VERY ill 3 years ago, and I'm much much better now, but like you fear getting worse.  

There are two different kinds of probiotics that I am familiar with:

--The ones that have been around longer are BACTERIA-based, often in the Lactobacillus bacteria family.  These tend not to cause many if any problems, at least none I've heard of (but I'm not a medical person!).

--The more recent ones have come from Europe in the last ten years or so, and are YEAST-based.  One brand name of these is Florastor.  The generic name is Saccharomyces boulardii (S. boulardii), which is also sold under that name, 'S. boulardii', as a supplement.

The advantage to a yeast-probiotic like Florastor over a bacterial-probiotic like Lactobacillus is supposed to be that the yeast-based ones are more effective against a very serious intestinal infection that can develop in people on long term antibiotics, caused by C. difficile bacteria.  It is difficult to cure, and preventing it is far, far better, because people sometimes die from C. difficile (tho often they already have serious underlying diseases that have weakened them).

As I understand it, the seriousness of possible C. difficile infection is one of the significant reasons MDs are against long term antibiotic treatment.  That is also why LLMDs often prescribe probiotics WITH the long-term antibiotics.

Because use of yeast-probiotics like Florastor is relatively new in the US, the MDs are just beginning to suspect that the yeast in those probiotics can, under some circumstances, grow aggressively and become an infection of their own that can be difficult to stop.

That appears to be what has happened to me:  

     (1) I had a low-level vaginal yeast infection when I started abx two years ago, but at that point there was not much in the medical literature that warned caution in giving someone with a yeast infection yet more yeast through yeast-probiotics; my LLMD didn't say anything when I mentioned several times in passing my long-running and quite annoying vaginal yeast infection; and there was nothing in the package insert or labels that I recall mentioning it either; and

     (2) I accidentally doubled up on the dose of the yeast-probiotics for several weeks, when I started taking generic S. boulardii along WITH Florastor for several weeks, not realizing it was the same thing as Florastor (duh) -- that's why drs want to know and approve everything patients take, whether prescription or not.

I tell you all this not to scare you away from probiotics, but to be aware of the yeast-probiotics and that if you have a vaginal yeast infection or get one while on yeast-probiotics, your MD should investigate, and don't back down until he or she does.

Like anything else that goes in your body, there's upside and downside.  C. difficile infection is dangerous, and yeast-probiotics are helpful, but like all meds, they have to used with a cautious eye for problems that could, rarely, develop.

I hope that helps -- I'm not medically trained, and this is just my personal experience.  Check with your dr, and I've learned not to take supplements without asking first.  (Now if we can only get doctors to pay attention to supplements and not respond with a wave of the hand and a 'Whatever.')

Take care -- let me know if you have any other questions.  Happy weekend!!!

[Jena906]

Your post makes sence to me.  The Id dr at every visit would ask me if I had problems with yeast and metioned C diff. ( I had to go to work and look that one up in the medical books)  Not a good thing to have.  So I do understand the dr's reasoning of stopping if I was better.  

Thanks for the reassurance that I did the right thing by stopping the antibiotics.  

Hope you have a great week also !!!!!