posted
After researching prophylactics for a recent tick bite, I realized I've had lyme + co's at least 4 years, if not longer.
I recently finished a week's worth of doxy, it's all I could get from my doc for this recent bite. The first two days went okay enough, then the fun started.
At first it was all the lymph swelling in my underarms down my side ribs and down my spine, pressing my arms to my sides just felt squishy from the swelling. Then it became more flu-like, feeling soreness within my bones and stiffness all over, but especially in my back and ribs.
Then the shaky malaise took center stage. I was a non-functional zombie for two days, both of which I was unable to get up from the bed for a considerable amount of time after waking. I became an emotional wreck, full of despair and fear. Burning neuropathy was all over the board for the duration of the week.
One night I had fever/chills with extreme nausea/stomach pain, this was a full day after I took the last dose. I think it was that night, or perhaps the one before, that the shakiness gave way into an unnerving full body sense of internal vibration/fluttering as I lay in bed.
None of these symptoms are new for me, except the vibrations. I usually don't experience them all at once though.
My original plan was to start a course of meds on my own until I could get to the LLMD, but I'm thinking now that is probably a pretty bad idea, scary for me in the least.
I'm back to feeling a slight semblance of what my usual normal is. I know I need to treat, but seeing how I reacted to just a little bit of meds has me pretty scared of what treatment is going to make me feel like. Prior to this I already practiced daily rebounding, dry brushing, and epsom soaks, I'm definitely going to need a much bigger detox toolbox.
My reaction is in no way putting me off of treatment (at least until I can do it under the guidance of an LLMD), I just wanted to vent a little bit. I'm scared and feeling pretty alone in this, even though I think my spouse has come around to accepting lyme and it's need for treatment.
I'm frustrated knowing it'll probably be a solid month or two before I can see a doctor. I'm frustrated even more by my desire for my child to begin getting treatment first; it's a work in progress getting an appointment with a pediatric LLMD. I hate considering all the threatening uncertainties that cloud the future.
Posts: 474 | From US | Registered: May 2014
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posted
Yes, it's very scary in the beginning. Do you have an appointment lined up?
I would hate for you to run out of doxy!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is very typical to go completely to pieces when you first start treatment. It is called a Jarisch- herxheimer, or herx for short. It is a reaction to the endotoxins released with the die off of the pathogens. This reaction supports the diagnosis of lyme.
You always get worse before you get better. I hope you can get back on doxy as soon as possible. There are several good doctors in MD. It wouldn't be good to start and stop. Maybe the doctor you saw will give you more - at least enough to get you to an appointment with an LLMD.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thank you so much for the replies! And I think you may have answered the biggest question I've been wondering about, that if it would be real bad if I wait it out to start actual treatment.
I am going back to my pcp tomorrow to get the blood test they offered me when I was last bitten. I'm taking with me pictures of the EM rash I got after a previous tick bite 4 years ago, which was treated prophylactic-ally with a week of erythrocin. Other than that bite and thinking for a few moments to take the pictures, all that never made it to the front of my mind until I had some time to ponder the most recent bite. I can remember exactly when the neuro stuff began about 10 years ago. With all the camping, fishing, etc., that I used to do I've probably been an unwitting host for a long time.
Current pcp refused/couldn't prescribe me the amount of doxy I wanted and reluctantly gave me a script for tinidazole, which the insurance wouldn't cover. With the pictures, the checklist, and the records they have for the issues I've had in just the past year there shouldn't be any problem dx'ing me (says the logic of my brain), so maybe I'll be able to get some meds for a little while.
I'm guessing I'm already what is considered late-stage? I figure whatever I have has been active for the past year+, considering the regular flares, which the dr's office told me was normal for many women with chronic pain due to the hormone fluctuations of the monthly cycles. That didn't make a lot of sense to me since my cycles weren't regular but the pain flares were
Scheduling with an LLMD is mostly about the money for me right now, but we're eliminating some pretty important stuff to free up some $$ so I should be able to schedule soon.
So perhaps the best course of action for me would be to rough it out with some doxy and tinidazole until I see the LLMD and then go from there. The reactions I had were with doxy alone. Thinking back on it, the numerous times I had taken tindamax alone were always followed by strings of illnesses. Once I dosed it numerous times in a month, a short time after I became sicker than I had ever experienced in my life and the outcomes were devastating. Coincidence? I always blamed the stress of my life situations for stifling my immune system, maybe there was more to it.
I'm not looking forward to seeing how sick this is going to make me, but I don't want to treat with doxy alone and possibly set myself up to be more difficult to treat later down the road. I think my pcp treats late stage lyme with doxy and tinidazole, so at least I won't be without some medical provider support.
Are there notable threads on detox supplements that could help me? Is molybdenum helpful for these herxes? I'm thinking things like vitamin C and diatomaceous earth would be good as well. NAC and milk thistle have been on board for a while. I will appreciate any insights and advice Posts: 474 | From US | Registered: May 2014
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