After 6 months of nagging my doctor & 2 negative tests, i've been on 100mg doxy for the past two weeks as a 'trial'.
I got so many symptoms, even the doctor thinks it's probably lyme but with no positive test its difficult to get treatment.
I know its a low dose, but it's all I was going to get so its worth a try. I'm grateful to my doctor for listening. I've also been refered to the infectious disease dept at the local hospital for further tests, no idea how long the waiting list will be.
I've had no herx that i'm aware of but my symptoms have got a little better. The tinitus is a little quieter, the vibrations in my legs & arms have lessened & turned into tingling again & I think my energy levels are slightly better. No change in the joint pain in my ankle but its early days & i think the early infection caused by the bite could have damaged the joint anyway.
Today i've managed to talk the doctor into another two weeks Doxy, this time at 200mg. After this I've been told to stop taking them and see if the symptoms reappear.
Does anyone have knowledge of the UK nhs system? If i did get a positive test how long would they treat me with Doxy for anyway?
Is it possible to get better without a herx? & does anyone get better with 4 weeks abx? Afterall this is the recommended guidelines. Does it work for a percentage of patients? The only private LLMD in Wales is too busy to take new patients for at least 3 months so this is my only option for now.
Posted by gemofnj (Member # 15551) on :
Mid,
I guess anything is better than nothing. However, the minimal dose of doxy is 400 mg a day for at least one month to 6 weeks if you have just gotten bit by a tick.
How long have you suspected lyme? There is a list at the top of the medical page with all the lyme symptoms and in the guidelines I have attached below.
Did you discover a rash?
If you can find a good LLMD, they will probably recommend being tested for coinfections, which are bacteria that travel with lyme. They can also complicate your condition and lengthen treatment.
In case you weren't aware, do not lie down within 1/2 hour of taking doxy as it can burn your esophagus and intestinal tract.
Also it is recommended that you stay away from dairy and absolutely no sun whatsoever. You can burn very easily in like a few minutes without redness.
You can google product information about doxy if you dont have the paper that came with your prescription.
As far as getting better, some folks get worse before they get better, this called a HERXHEIMER reaction. (or herx)
Symptoms can take months or longer to lessen. Some people transition onto to different meds and others remain on doxy.
I personally did not herx during treatment and my symptoms gradually improved after several months.
There are some folks who post here from the UK, and maybe there is someone who might see this post who can recommend a good lyme literate doctor in your area.
Or start a new post for UK residents looking for LLMD in your area.
If you havent gotten a copy of Dr. B's guidelines, (top doc in usa) attached is a link for you to print out and read carefully.
Unfortunately, it is not likely lyme will be eradicated in just 4 short weeks. It sounds like you are reading guidelines posted from IDSA (mainstream medical docs).
Seek out any information posted by lymenet or canadian lyme or ILADS. These organizations are most accurate regarding lyme and its treatment.
Good luck! Posted by TF (Member # 14183) on :
Since this is NOT a recent bite, 1 month of doxy, no matter the dosage, is not going to cure you. It takes at least a year of various medications once you have had lyme disease for a while.
And, it takes much more than just doxy.
You must be tested for all tick-borne diseases to find out all the ones you have.
Most people have at least 2 other diseases, called coinfections. For example, babesiosis, bartonella, ehrlichia.
Study the Burrascano guidelines (link given you above) and you will learn all about lyme and its coinfections and the high-dose combination antibiotic therapy it takes to eradicate it. You MUST study and learn. This is the best document on lyme disease.
You will have to see a lyme specialist to get proper treatment.
In the U.S., infections disease docs are the ones who treat lyme patients the worst. So, we would all tell you here to avoid them like the plague. They will never treat anyone with more than 30 days of antibiotics. And, usually they tell you that you don't have lyme disease anyway. They just refuse to diagnose people with lyme disease, regardless of symptoms, test results, etc.
3 months is not a long wait when it comes to lyme doctors. (I know when you are really sick, a week is a week in hell.) So, I suggest you get with the lyme doc you know about. If it turns out he does not follow Burrascano (ask when you call to make the appt) then just stay with him until you can find someone who does.
Posted by middlesizedpanda (Member # 20676) on :
Thanks for response, that confirms my worries.
I got bit in Dec 08. First I knew of it was a classic bulls eye rash that blistered, then infected. Had Flucloxacilllin 500ml x 4 for 14 days plus Penicillin Vk 4 x 500ml for 14days for the infection in my ankle. Couldn't even weight bear for a couple of weeks. Even now (6months later) i still got a red ring around the central scar. It wasn't until March that I discovered it could be lyme related.
I think there is a high possibility of co-infections due to the rashes I'm getting.
It's taken until now to even get a doctor to take me seriously so I do feel I'm getting somewhere.
The only other llmd i've found is quite a distance from Wales, I've spoken to them on the phone and they think the fees for consulation & testing could be approx �2000 - I'm still hoping the nhs will treat me.
Posted by caat (Member # 2321) on :
some people don't get herxes at low dose OR with lyme in general... but I think maybe you should consider bartonella as well... There aren't commercial tests for ALL the species of bart, but I think it wouldn't hurt to have some tests done.
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