posted
I was just diagnosed in August 2008 and have been on Doxy (400 mg), then Biaxin/Alinia/Diflucan combo for a while, and now on Ketek. I have so many bad neurological symptoms and literally feel like I am dying.
I'm trying to take chlorella, lemon water, epsom salt baths for detox, multiple vitamins and supplements- but no matter what I do, I've just gotten worse and worse over the past four months. How long can you keep on herxing and have it still be okay for your body?
At what point do you push your LLMD for more aggressive treatment? I don't know if he understands how unbearable life is and how I am just absolutely miserable.
My husband is a pharmacist and would like for me to push my LLMD for IV treatment maybe. I'm just not a forceful person and don't know when I should be an advocate for myself and when I should just sit back and trust my doctor.
Posts: 236 | From Washington | Registered: Jul 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
This is just my .02, but it sounds like you are having aggressive die-off right now and shouldn't push for more aggressive treatment at all! In fact you may need to back off on your existing tx. If you see my LLMD (well known in CA, not like there are many!), he's known for aggressive tx and sometimes you need to actually back off and let him know it's too much.
Posts: 3528 | From US | Registered: Apr 2007
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david1097
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Member # 3662
posted
I started off immediately on IV, but relapsed badly on orals. Many of them and high doses did not work. Had to go back in IV to reverse the trend. It just kept getting worse and worse until the ceftriaxone. Also had IV doxy, and carbipenum. Only the ceftriaxone worked.
I think it has more to do with the type of antibiotic and tissue penetration than it does with IV vs oral.
If what you are taking now is not working, why not try something more aggresive. Bicillin works pretty well in many cases, even with neuro symptoms. Of course ceftriaxone is the typical big gun due to its good brain penetration.
If this does not work you might want to re-think the lyme diagnosis. It might be some other type of infection that does not respond to ABX. Better to find out sooner than later. I personally do not believe that it takes months of an effective abx to work. From my experience I have found that if it is going to work, you feel the difference by two weeks. It takes a long time to recover and you can relapse if you stop the abx but if you you don't see something early on then they aren't working and best to try something else. At least thats the way I see it. Also it is hard to judge on your own how well they work due to the daily fluctuations of symptoms. If they work, others will see an improvement... People I talk to say they can tell just by my voice over the phone.
-also-
Now that you have been on abx for a while you might also get a WB done again to see if any more bands light up. In many cases they will after the abx has had some time to generate bacteria fragments. I say this because the wb results you have listed are pretty light and if some of the higher potency abx don't work you might want to look at some of the non-bacterial infections. There are some nasty ones out there that present just like lyme.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Thanks cd57 and Dave! See, the thing is that this feels like one gigantic herx, for four months or so. I've not gotten any better, and most of my symptoms have gotten way worse. David, you said that people notice you sound better, but for me, people are getting really worried about how sick I look and sound, even people I don't know well.
So, I feel like I'm maybe really responding to the antibiotics. It's happened in the past too on Cpn treatment, before Lyme diagnosis, where I'd feel really sick on antibiotics and the doctor said I was herxing.
It's just so hard to tell. I've been sick for so long, and now I'm just getting so bad that my husband is terrified that I won't be around much longer Posts: 236 | From Washington | Registered: Jul 2008
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
In my opinion, if you are getting worse then they are not working the way they should. You might very well have a combination of diseases. When more than one exists, there is a balancing effect between each of them. The anti biotics may very well have irradicated one portion leaving the others to run wild. This is one of the problems with lyme infections. As your immunity gets worn down all sorts of "self limiting" diseases can start causing trouble.
Also unfortunately not all bacterial infections respond to the broad spectrum antibiotics and this lack of effectivness can also let one of the different bacteria become dominant...resulting in similar but different symptoms.
The big problem is that lyme symptoms overlap with quite a few other diseases and it is hard to sort out what exactly is going on. Again in my opinion, if a certain path does not lead to improvement then it is the wrong path. It is seen many times with misdiagnosis of an active Lyme infection and i am sure that it also happens with an incorrect lyme diagnosis.
Here are a couple of things you might want to try to figure out what is going on. Lyme is an inflamatory infection. The symptoms are caused by inflamation . A dose of oral steroids should bring immedaite relief to some of them. I'm talking about a singe oral dose here, not the extneded usage that so many here have used and paid the price for. I have found that the lyme symptoms improve in an hour or so. If they do not improve you might want to start looking at some other diseases.
You might also want to stop the antibiotics for a few days. If it is lyme then the symptoms are slow to respond to both starting and stopping the abx. It takes weeks for lyme to start to come back. It comes in repeatable waves and are quite noticable. If you have an immediate worsenng then it is not lyme that you are keeping down. Look at some of the mre agresive infections.
It is also possible that your current meds are not getting to the lyme. It happend to me, the only thing that worked was ceftriaxone. It worked quickly whereas the other stuff did not work even after months, I just keot getting worse.
Since you are on this path, I would try the more potent ABX and see what happens but if no reponse then I would stop, see what happens and if things gets worse go back on them until you can figure out the who picture. Note that High potency IV ABX in the long term are hard on the body. I look like I am 20 years older than I am after being on the stuff for so long. In the end it worked so it was worth it.
Posts: 1184 | From north america | Registered: Feb 2003
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