I want to Stop the Doxy

I need input because I swear I'm not imagining these side effects I'm pretty sure I'm getting from Doxy.  I really wanted to believe they were just herx and I would be ok, but now I'm not so sure.  I called my LLMD-in-training last week and said I didn't think I was doing very well on the Doxy and he said he wanted me stay on it at least another month.  I am on my 7-day break from abx (should start back on Wednesday) and 99% of my latest symptoms are better.  I first noticed my "well-being" was slipping.  After the suicide thoughts in late July or early August, I have a watchful eye on the well-being part.  Cipro originally took the thoughts away.  There's the nausea and the not-knowing how each dose is going to react....whether I'll feel like throwing up or it's just so-so nausea.  The biggest thing is the muscle/joint/bone pain.  I've mentioned on the forum before that I'm lucky I don't have the aching and pain, that mine is mostly the neuro symptoms, but this pain started about two weeks ago and got progressively worse....shoulders, neck, head, hip, ankles.  It also felt like my brain was swelling/swollen even more than usual. 

I would just like to hear from some of you who had to stop Doxy and for what reasons.  I know I've read some of your posts about how horrible it was/is, but I need something to tell my doctor besides "I'm not taking it"....I would like to at least be able to say "I got feedback from several people who said they had to quit taking it because of....etc. etc."  Maybe that sounds cowardly, but I don't really want to make him mad at this point!!!!!!

I appreciate all of you and some of your stories lately are more than heartbreaking.  Thank you for sharing.

Mamyou:
I was wondering how you were doing with the doxy. It did not work for me, it gave me such terrible stomach ache, I could not tolerate it. Keep in mind that I have not have had any problems with any drugs, my stomach never hurts. Anyway, it gave me diahrea, I think most of it ended up in my toilet. Now I am on 2 different abx, ceftin and bioxin, I've been on them for a month with no problems. I could not see in my stomach, but I swear, the pain must have caused my stomach bleed. It was unbearable! If I was you, I'd ask the doc for a different drug--they are others out there, no reason to be on doxy if you don't tolerate it. Would I be willing to try it again? Perhaps, but if it does the same think, I would drop it again. OTOH, if it is producing a lot of killing, it may be worth to tough it out. In my case, it just didn't stay in my system, so it was not worth the pain...

Mamyou -

I took Doxy at least twice and had to stop both times. I can't remember the exact symptoms of the Herx reactions I had (I've tried so many different antibiotics and had vastly different symptoms from each). I do believe Doxy is one that you want to take WITH FOOD. Some antibiotics/Herxes have caused severe nausea and diarrhea (which is a VERY common side-effect and I had it to the point where my bottom was SO incredibly sore and it hurt terribly every time I had to "go"), dizziness/vertigo to the point where I can't even look at a TV screen or move without feeling sick, and even daily (happened to be in the morning for me) vomiting, severe increase in pain (unbearable), and bladder pain/spasms (felt like I had to go ALL the time but couldn't).

There are medications you can get, some over-the-counter, some prescription, to help manage the symptoms of Herxing (and I would encourage you to do so if you're okay with taking additional medication temporarily). My philosophy is I would do just about anything to make it through the Herx reaction and be able to continue on with treatment. It's amazing what the LEVEL of pain and other awful symptoms has got to be to make SO MANY people stop treatment of a disease that is ruining their bodies and lives. It has always been a constant mind-battle for me, weighing out which is worse - being sick forever or wanting to DIE temporarily from Herxing. Often this is something that only the patient understands (my mother always used to say, "*I* would do ANYTHING I had to to get better." I would think I would, too, but it's never so easy.

I took Phenergan for nausea and vomiting (extremely effective) and used an ointment and wet wipes for the soreness the diarrhea was causing (yes, this disease can cause quite an unspeakable and sometimes embarrassing mess!). I took Dramamine very rarely for dizziness and was also told I could try Anti-Vert, though I never did. I increased my pain medication (OxyContin) for many months when the pain increased (and I'm now back down to a lower dose), and I took an over-the-counter urinary tract pain medicine for the bladder pain/spasms (which also worked great). These combined symptoms didn't usually ALL come on at once - there would be two or three at a time with the start of each different antibiotic. I think the absolute worst thing was just the pain (deep, aching, sore, tender, stabbing, sensitive, etc.) that NO amount of narcotics would relieve (it helped, for sure, but no matter how much I took - and I took quite a bit! - it was never good enough relief to allow me to do the things I wanted, or sometimes needed, to do).

My doctor is big on starting antibiotics SLOWLY and working your way up to the appropriate dose...and I mean starting VERY low. Have you considered this as an option? I would try to do whatever you can to find a dosage your body can tolerate...then gradually work up to a dosage that's working... There were some I cut into tiny quarters, others I dumped out half the powder inside the capsule (and still sometimes the Herx was terrible!).

I'm sort of wondering why you're second-guessing whether you're having a Herx. It sounds like it to me - you said you're feeling better now that you're on your break (I assume you're pulsing?). Herxing can last quite a while...and it can REALLY screw with your brain and thinking/cognitive processes... Another thing that can help (because your brain often wants to give up so quickly) is to write down your long-term goals and your treatment plan (logically); then refer to that when you find yourself reacting emotionally to what you're going through... Also, waiting another day to make a decision such as stopping, then seeing if you can wait yet another day...one day at a time sort of approach.

I've never taken antibiotics on a pulsing schedule, though I know many do and I'm sure it has its benefits (gives you a break to recover and rest), but it seems it would also have its cons as your body is constantly having to readjust instead of being on a continuous adjustment, if that makes sense.

It's not easy... If you can find a way to stick with it, even if that means complaining on the forum every 30 minutes or whatever you can do to get support, the side-effects (Herxing) WILL get better...including stomach/digestion/diarrhea issues...

Rachel

Just as an FYI/precaution - Diclofenac is an NSAID so you don't want to take it with Aspirin, Celebrex, or other such drugs.