posted
First off, I want so say greetings to all as I am new to this board and this horrid illness.
I was kissed by a tick about two months ago (inside my nose of all places). The little monster fell out on my keyboard dead after a two week battle with what I thought was a staf infection. Unfortunately I lost the bug in the confusion in the next few weeks.
Two weeks after the keyboard bug (about one month ago) I was hit with meningitus-like symptoms and a small seizure. Because I travel into third world countries frequently, I keep a supply of meds on hand. At this time the strongest oral antibiotic I had was Cindamycin, which I started taking. Symptoms reduced greatly after 36 hours and I continued this 300mg 2x day, for about a week. I also added Plaquenil 200mg 2x day, which seemed to help with symptoms. During this time I put two and two together (tick bite + the classic symptoms) and found this site. After much reading, I decided to change to Doxycycline (200mg 2x-3x day) plus the Plaquenil and continued this for 3 weeks.
I took 'Cats Claw' one day which I believe started what you call a 'Herx'. Most symptoms returned, plus kidney pain, testes pain, difficulty passing water, and had cloudy urine for a few days. I switched back to just the Clindamycin at the beginning of this and all these symptoms were reduced or disappeared.
I checked into the local hospital, where they took blood/urine samples, electocardiagram and sent off for a "Titer" test (takes a week) and was released diagnosed as healthy with a non-specific headache (just shoot me). The emergency room MD unofficially suggested I continue the Doxy though. The following day another MD (Lyme uninformed to be charitable) told me that Lyme was not a problem here (west coast of Oregon) and suggested a thyroid blood test. All I can say is thank god a rabid pitbull hadn't fallen from my nose or I'd be finished. Now I await the results of the so called "Titer test" and am basically still on my own as far as medication and treatment. I seriously would be better off in a third world country where I could walk into the local farmacia and pick up what I need easily and cheaply. I have theories why MDs plead ignorance and are ineffective, but it does me no good to rag on them at this point.
Anyway, that's my story and I'm sticking to it, until I've moved on to the vegetable bin.
Any feedback appreciated.
Posts: 40 | From Pacific NW | Registered: Mar 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sent you a list of Oregon LLMDS
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
posted
Good luck finding a lyme doc in OR! Not very promising.
But, you are at a stage when adequate treatment can knock this in the head, so it is important not to let it slide. Do whatever it takes, or you will end up with chronic lyme like the rest of us.
The other thing is that doxy will not treat all the germs the tick might have given you. This med will hit lyme and ehrlichia but not babesia. Some of us get several diseases at a whack from generous ticks.
This is why you need to find a doc who will know a lot about tick borne diseases.
By the way, the titer test or ELISA, is known for many false negatives. So, the result of your test will not be conclusive. FDA has issued two advisories to say that lyme is a clinical diagnosis.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thx for the response folks. Thank god for the internet, twenty years ago I'd be lost on this issue and at the mercy of uninformed yet egotistical MDs. I am absolutely floored that professionals in my area are in denial over the Lyme issue as I'm located next to the rain forest and elk populated areas (where the ticks are).
Thx for the test info Lou, I was unsure what "Titer" meant. I'm not placing much faith in the test either way, but would be helpful to know exactly what I'm up against, so I can treat effectively. As I mentioned all test to date have been normal (including the thyroid test as of 5 min ago) I'm petty much 'flying by the seat of my pants' on the treatment and using the reoccuring symptoms (mainly the horrid feeling at the back of head [not pain]) as indicator as to what is effective.
Clindamycin 600mg day, seems to work the fastest, but not the best when it comes to CNS.
Tetracycline 2000mg day, symptoms returned rapidly.
Rifampin 600mg day (for secondary infection), stopped for side effects.
Plaquenil 400mg day (for secondary infection and protazoa), seems to help with arthritic symptoms also, but with some side effects.
Doxycycline 400-600mg day (about all I can stand) to hopefully break thru to CNS infection.
All I have left in the bag is Sulfatrim D/S (sulfanethoxazole/trimethoprim) which hasn't been effective for me in the past with other infections.
and also Penicillan G injectable (of which I don't have the stones to use) .
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Thx for the list of links Treepatrol, should keep me busy until my eyes give out. I can use all info I can get.
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Thx again
Posts: 40 | From Pacific NW | Registered: Mar 2005
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Ist a reminder not to use outdated (expired) tetracycline or Doxycycline.
My LLMD says you often don't know if a drug is working until you take it for 3 or 4 months.
Sometimes a drug will make you feel better right away, sometimes worse and sometimes no change for quite a while. The change can be gradual or sudden.
Find an LLMD fast.
Tetracycline 750 mgs bid has worked well for me and is easier to tolerate than an adequate dose of Doxyclycline. The dose typical Drs. prescribe (100mgs bid) is inadequate.
Read up on anti yeast diet since like the rest of us you'll be taking antibiotics for a long time.
I'm having great inprovement since finding an LLMD.
posted
Just got my first "titre" which was actually a western blot. Results over the phone were all negative. I'm still on my own as far as meds go. Ran out of clindamycin and have returned to doxy w/ side order of cats claw. So far as the ducks and their tests go I'm in great health.
Over the last 3 years I've spent $40K out of my pocket to this rotten industry. Being charged $80 for sponges and $1200 for rooms I was in for 20 minutes adds up very fast. I gotta get out of this country, before modern medicine kills me, it's all ready robbed me.
[This message has been edited by Noob (edited 09 April 2005).]
Posts: 40 | From Pacific NW | Registered: Mar 2005
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posted
Hey there Noob, just wanted to say your posts are a great read, keep that sense of humor, you'll be needing it...but then, when isn't that the case?
Maybe we should form a coop and get some able bodied person to go drug shopping in Mexico...no, I didn't say that. I didn't even think it, and if I did, I didn't mean it, the winking is just another trick of my neuroborreliosis, do not be misled.
God, listen to me, so much doubletalk I could have an MD after my name.
There are a few good ones, but the system they work in has all the healing properties of a coal mine.
Welcome to Lyme[net].
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
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I was heading for Costa Rica but getting oral ABX etc, was never a problem in Baja. One might have a problem with painkillers (because of the dopers), but everything else it's cash and carry. There are pockets of ex-patriot communities down the east and west coast of Baja (should one need more help with IV meds etc.). La Paz has a hospital, drug stores which I've delt with, no problemo. You don't need to speak fluent beaner to get by in Baja. Happy trails.....
Posts: 40 | From Pacific NW | Registered: Mar 2005
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