Im sorry this post is too long, but I really want to describe my situation exactly and dunno how to go on.
Im on 1 g biaxin, 2 tbl. of malarone and 200 mg arte for three months now. I know 2 tbl of malarone isn't much, but I simply cant effort to buy more. Everybody here says its a great regimen thats worth trying even if you - like me - never had a positive babesia (or bartonella) test. So I tried it.
but my symptoms are only getting worse. When i started this course in September I had about one hour bad neuropain each day, now I have only about one hour without severe neuropain each day. My daily life is turning into hell again. Yesterday I even started to cry in the subway because this disease, the pain and my lack of perspective depresses me so much. I really do everything I can, live extremely healthy, do sports, read about lyme and so on.
For those who dont know my story: I am sick since 6,5 years, got mistreated with steroids, later diagnosed with lyme and treated with abx since about four years. I got better a lot on high-dose abx (mostly rocephin, macrolides, plaquenil) and even have been without abx for more than half a year twice - but never recovered wholly and relapsed every time.
This time seems to be the hardest since the beginning of the disease. Not even those meds that helped me in the past now help anymore - like biaxin at the moment or rocephin this summer.
isnt it time to quit arte/malarone/biaxin now?
i have an appointment with my doc (she knows a lot about lyme, but is not a llmd. I have a llmd who is 500 miles away and who I telephone with) and want to ask her to change meds - but to what? My llmd suggested
a) vancomycin iv or b) clindamycin iv with flagyl and plaquenil or c) oral diflucan
Ive also read promising stuff about Rifampin, Cipro, Onmicef after I talked with him.
What would you do? whats a good combo? what can you combine diflucan with?
I think Ive tried nearly every other abx: rocephin, zithro, biaxin, flagyl, plaqu, cefotaxime, ketek. I had an allergic reaction to amoxy and also cant take any tetracyclines (as doxy) cos I got nearly bedrdden on them. That's also why I don't dare to take mino.
thank you for taking your time to read this, steven
Posts: 226 | From earth | Registered: Sep 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there...
Sorry to hear you are down in the dumps. My sincere wish is that no one would have to feel that way. But...
Suggesting what drugs and doses to take, especially in a complex situation like yours is not what we do here. That is a question only your doctor and you can decide upon.
I can say that there is hope that you will feel better but you need to speak with your doctor and give them all of the information you can.
No one protocol fits all... so it is a matter of figuring out what works best for your situation. It can take time and can be VERY frustrating.
If a combo isn't working though... please do speak with your doctor and let them know.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sorry about all this. I know how hard it is. We all probably go through crying & other forms of anguish as a result of this illness. It really sux.
I posted some other stuff on other threads but Im going to try the Cowden herbal protocol. I'm sick of the abx & I'd like to try something different. There are some people who are having good results with this protocol.
Do a search on google for "Cowden, lyme" & you'll find the info if you are interested.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I agree with the others.
Did you know some of the drug companies have compassionate programs where they make drugs available? Mepron I believe is accessible through these plans.
I would do whatever my LLMD (who follows Burrascano's Guidelines) says. If s/he wants you to be on 6 months of Mepron (alt. to Malarone) full dose; see whether you can get hold of it.
Best wishes,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
It could also be that you have viral issues going on that need to be addressed.
I am one person who had lyme, and then viral infections surfaced. The symptoms are the same, unfortunately. If viruses are active in you, all the antibiotics in the world won't help.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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quote:Originally posted by cave76: Please read posts here about how long some people had to take abx before improving.
It might help you realize just how short a time you've been on abx.
....................
If it were me---- I wouldn't give up so soon.
But, do what your llmd suggests.
I agree!! Three months didn't do it for me either. I used clindamycin/quinine and zith/artemisinin to clear mine. Took about 2 yrs or more...can't remember!
Then there's always mepron/zith to consider.
Be patient...it will happen!!
PS...Maybe the Biaxin is causing side effects. You asked about interactions with Diflucan....You can check all interactions with www.drugdigest.com
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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quote:Originally posted by steven: but my symptoms are only getting worse.
Yesterday I even started to cry in the subway because this disease, the pain and my lack of perspective depresses me so much. I really do everything I can, live extremely healthy, do sports, read about lyme and so on.
This time seems to be the hardest since the beginning of the disease. Not even those meds that helped me in the past now help anymore - like biaxin at the moment or rocephin this summer.
isnt it time to quit arte/malarone/biaxin now?
What would you do? whats a good combo? what can you combine diflucan with?
steven
Steven,
One of the hardest things I try to learn about this is that even though I am trying very hard, like you say above, eat right, etc., I am still burdened with this disease and simply cannot figure out why. I should be well by now by all sense and logic. And by my effort. But it is not true. So when I hear you say you cried in teh subway as if it is your responsibility, I empathize. I think this disease is so hard to live with, for so many reasons.
It sounds like you have been at this a long time, 4 years, so you have more hindsight than I do. I am just passing my second year of having been diagnosed after liveing with it far too long.
I don't know what is best for you to do, but if you are questioning whether you should stop the malarone, then what I would do is really investigate why I feel that way.
I could not tolerate mepron, myself, after a month of a very low dose -- the second time I tried, and have a very highly positive babesia test from Fry Lab.
But I know what I can tolerate and what I can't after a loooooooooong time of many herxing hours bedridden, eternally crying.
So, even though I know I carry babesia, I've taken a break from the meds because I want to have a quality of life NOW. I have often felt the medicine was killing me more than the disease. At a certain point, earlier on, this was okay with me because I knew I was killing of the bugs and it was causing havoc. But after two years, I know I need to take it slower and be more reasonable with my choices with regard to medicine. I will likely go back on some antibiotics by I've almost resolved with myself that I will be living with this one way or another, or as in the NPR story, the man said, "you just have to shake hands with this disease".
And the truth is, my opinion is that nobody really truly knows exactly what this happening with this lyme bug in us. I am more of a middle road kind of person who knows antibiotics are necessary, and even on a long term basis, but at a certain point,
I think I cut my losses so to speak. Try to balance out my body from all the effects of the die off and the disease and try to come to some semblance of letting go the desparation of needing to get well in a myopic focus.
I don't know if I've made any sense to you.
But I wanted to say that it seems a neverending balancing act about the regimen, in a constantly evolving cellular dynamic.
Maybe you could get a second opinion from another LLMD.
Of course I don't know what's best for you, but wanted to say...hang in there!
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Steven,
My son has had problems with babs off and on for 3 years. It is difficult to eradicate in some situations especially if you have viral issues along with it.
ART should only be taken for 4 or 5 days continuously then take a couple of days off. It loses absorbency after this 4 or 5 day period.
Secondly, we've found ART worked better at 300-400mg taken at one time. ART quickly enters the system but also leaves very quickly. ART is nearly undetectable in your system after a couple of hours from ingestion.
I'd doubt seriously that your increase in symptoms is due to an increase in infection. The regimen your on would at the very least hold the babs/lyme in check so to me the increase in symptomolgy is more due to your level of toxicity.
You must detox regularily when using babs treatment. By not eliminating the dead bacteria you keep recycling it.
We use allicidin or allimax to address any viral issues. Most lymies have viral or fungal issues which complicate things and make treatment more difficult. Prima Una De Gato has really helped.
My son has gone many months without abx and he's getting better. We use homeopathics only. Your body may be telling you that you need a break, need to detox.
For viral issues we've also found that isopathics are helpful such as pleo-quent. However, any change in treatment must be discussed with your doc. Isopathics are man-made bacterial supps from Germany. Very powerful and I would not recommend any lymie dive into these without a knowlegeable doc's supervision.
We've used plaquenil with ART in the past to treat babs. My son responds well to it and much less side effects than mepron or malarone. It's about 50 times cheaper as well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
thanks for ideas and nice words to all of you. of course I dont intend to replace my llmd with this board nor ignore his adive. Just was asking for experience of others and comments on my situation.
Turtle, of course you are right, that we have to shake hands with this disease. buts thats the hardest part of all. its like shaking hands with devil.
i stopped the malarone on friday - and had two better days now.
Posts: 226 | From earth | Registered: Sep 2007
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posted
did a day without abx - and had only very few symptoms... great, but strange.
llmd will put me on flagyl iv (1000 mg iv and 1000mg oral - sounds like a lot!), oral zithro and plaquenil. I'll start tomorrow and let you know about my progress!
Posts: 226 | From earth | Registered: Sep 2007
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posted
I just posted about diflucan helping my neuro pain (unresponsive to abx)...maybe after all these years of abx you have a systemic yeast problem. Definitely give diflucan a try.
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