In your circumstances, I would want abx until all symptoms are gone or 6 weeks, whichever comes last.
 

Welcome to Lymenet.

ABX means-antiboitics. I'm glad the doctor is treating you, but you need to take them until all your symptoms are gone...very important.

It's also very important to get tested or treated for possible co-infections. You can get many different infections from the bite of a tick.

If you are still feeling unwell after the 30 days of abx has ended and your current doctor will not give you more or test/treat for co-infections, find a LLMD. (Lyme Literate Medical Doctor.)

You could also print out Dr Burrascano's treatmeant Guidelines and take them to your doctor. The guidelines talk about co-infections and treatment protocals. Maybe your doctor would be willing to follow the guidelines?

If you need a LLMD, someone here at lymenet can help you. You can post in the seeking a doctor section of Lymenet.

Good luck to you and I hope you will be feeling better soon.

When I finally got a diagnosis of lyme I was on ammoxycillin and doxycicline for six months and got my symptoms down to just about three days a month...the ducks took me off the orals(I should have been given iv) and within a month and a half I was IGM positive and sicker than I was before the orals got me better....

To err on the side of caution is advisable...belive me you don't want a late stage disseminated case of this bug or it's coinfections..... the zman

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You said he said " it can go away but come back later to give you arthritis and palsy"

Ok, so that is correct, but did he tell you WHY it can come back?

Improper treatment! And lack of testing and treating for coinfections.

I know you do not have insurance, but PLEASE find a LLMD , scrape the money up somehow, and get into one ASAP. a NORMAL future vs, one full of pure hell is

at stake.

You can post in seeking a doctor and someone can help you.

I insisted on a test and he ordered the ELISA test (which is worthless for testing Lyme in my opinion). The test came back negative. I went on my way thinking I was ok. I had zero symptoms, no fatigue, fever, aches, nothing....for three months.

Then all of a sudden and it was like a switch went on, my hands and feet were tingling! I did some research and found that a tick bite plus the erythema migrans rash = lyme disease, or definite exposure to the Borellia b bacteria. After a few days of tingleing I noticed that my whole body was buzzing, sort of like I was at the beginning of a bad case of flu. Kind of like the initial fight or flee reaction we all get.

But, no flu symptoms. It felt like I had drunk seven cups of coffee. I went back to my doc who poop oooed me. He offered another ELISA test, which I had and then came back negative. I did some more research omn my own and found that the ELISA test was unreliable, and that the Western Blot test was better.

Since my doc was convinced after 2 negative ELISA's that I was "obsessed", I paid for a Western Blot myself with Igenex lab. Just for interest, I had them run an ELISA test with the same blood sample. Guess what? The ELISA was negative (for the 3rd time), and the WB was positive, CDC positive on the IgM.

My doc was blown away and sent me to a neurologist just to see if there was something else going on (he was still in denial). The neurologist said I had sensory neuropathy induced by Lyme disease!

I dropped my doc and found an LLMD. I have been on strong antibiotics for 13 months now trying to get rid of this !@#$% bug. It had a 3 month free ride after the inadequate dosage first given to me.

You are in a critical period now where you have a chance to snuff out the Lyme bug. Act now, do some research, do not count on your non LLMD.

The process I went through was:

Make sure I was getting the right test, the ELISA is worthless, the Western Blot is the standard confirming test for Lyme.

Check the recommended dosage for early treatment. 200mg of doxycycline is not enough, my LLMD recommends at least 300 mg per day , or if you can tolerate it 400 mg.

Check the recommended term of treatment, I think 4 weeks of 200 mg per day is not long enough. I would go with 6 weeks minimum.

Get a Doctor that has experience treating Lyme disease, someone who has lots of patients.

As far as I know there are many people who had early Lyme disease and fully recovered, forever. You can get rid of it now, but you have to act immediately. Read Dr. Burrescano's guidelines for treatment on this site and compare that with the treatment you are getting. Ask yourself, am I comfortable with that?

Don't sit back and wait like I did unwittingly. Get yourself to an LLMD, and since that can take 3-6 weeks, finding one and getting an appointment, go back to your Doctor, try and have a western blot test. At the same time show him Br. B's guidelines and ask for a stronger dose of abx. If they won't do that ask for a longer period, ie six to eight weeks. You want to keep some abx in your system until you can confer with the LLMD.

Good luck, and remember you are in the window of opportunity for an "easy" full cure, don't let it close on you!

[This message has been edited by fredoroberts (edited 03 July 2004).]
 

I will be going back to my curent (for now) doc and telling him I want to continue the meds and possibly up the dose.
I am also planning on printing out some of the info. I have found on this site and others and giving it to him. For the sake of others he may treat because when he was talking to me about all of this he really seemed less on top of things than I would have liked.
You all have helped me so much more than he did. You have given me a good kick in the pants to start aggressivly pursueing the right help.I'll also be looking into LLMD
very soon.
thanks so much!

 

Is the rash still visible?
If it is, take a picture with a coin, ruler, or newspaper (showing the date) beside it.
Keep this in your permanent medical info forever.

As Beverly said, print Dr Burrascano's "Diag Hints & Treatment Guidelines..." - about 32 pages of excellent info from one of the very best LLMDs.

Also on www.ilads.org , print "Basic Info", 3 pages of facts everyone should read.
Read # 5-8: Testing
Note #10 says in part - No study has ever proven that 30 days of abx cures Lyme.

Take both to your dr - ASAP.

Your dr has given you the standard dose of Doxy, but according to Dr B's Guidelines, you need 400mg of Doxy per day "until no active disease for weeks."
This is found on pages 16 & 18.

Since you have had symptoms for less than 1 year, you have "Early Disseminated" Lyme.

The earlier the treatment - the better the results, but ONLY if treatment is adequate, both strong enough & long enough.

If a dr considers a patient "cured", then that patient should not have symptoms of the disease again.
It's similar to a sinus or ear infection that is not treated long enough. It simmers along, the immune system tries to get it under control, but later, it flares up again.
Each time, it becomes more & more difficult to deal with.

A light dose of abx kills off the weaker bacteria, but the stronger bacteria multiply & are more difficult to eradicate.
That's why with ear or sinus infection, they always say to take ALL the medicine.

Very important - take Acidophilus!
See pages 24 & 29 in Dr B's Guidelines.

The abx kills good bacteria along with the bad bacteria, so it is important to replenish the good bacteria in your system with acidophilus (from the health food store).
If not, you'll develop a systemic yeast infection (many of the symptoms are the same as Lyme).

Always be sure that you have 2 hours between the antibiotic & the acidophilus - before & after - or it won't be able to help.

Try to avoid carbohydrates (sugar & starch),
eat very nutritious diet, get plenty of rest, mild exercise as you are able (walking is good, but don't push yourself!), drink lots of water, etc.

For reliable info on all aspects of Tick-Borne Diseases (TBDs), check "Links for new LymeNet members" by Tincup. http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

We remember how confusing & overwhelming it was at the beginning.
Keep in touch, & ask as many questions as you need to.