let me begin with a brief introduction:
i have had lyme disease, i believe, for about 20 months now. i contracted it while attending college in Westchester County, NY.

i did have a rash and some early symptoms, but did not seek medical treatment for some time. about 6 months after the initial infection, i began developing other symptoms -- serious flu-like illness along with the beginnings of some neurologic symptoms.

throughout the following year i saw a number of different doctors and specialists for recurring sinus infections as well as further developing neurologic symptoms, and was given many short courses of oral and intramuscular antibiotics that almost always made me feel terrible (i now realize this was simply a herxhimer reaction).

i discovered after a great deal of time and research, that this was almost certainly lyme disease (rash, endemic area, textbook development of symptoms), but have been unable to attain positive lab results (granted, the first test wasn't even conducted until march of this year).

i have been serving in the U.S. Navy, and was therefore unable to search out a doctor who might be somewhat knowledgeable on the subject, and faced many of the same horror stories experienced by many of the others here.

after a great deal of terrible dealings with doctors in the navy, they finally decided to discharge me due to the increasing severity of my symptoms, and their inability to treat. i have moved back home with my mother and have been here since friday.

i am tired of sacrificing my quality of life to illness -- and immediately made an appointment with the most reputable infectious disease specialist in this area. i have only just come back from his office.

i don't know if he is fully qualified as a llmd, but he is very aware of the difficulty of obtaining accurate test results, and agreed to start me on treatment.
h
is prescribed treatment regimen consists only of 1000mg of Biaxin XL per day, for 30 days. I have been dealing with this illness for some time and am still optimistic for complete recovery.

i know for many with lyme disease in my stage and later it can take years of antibiotics in combination, pulse therapy etc. my hope is that wont be the case for me, but i don't know if that is at all realistic to expect.

has anyone here actually been treated, and effectively cured from a month of oral antibiotics. can i expect that maybe this dark chapter of my life is coming to a close? any help or advice would be very much appreciated.

Kevin

[This message has been edited by daedalus (edited 08 June 2004).]

[This message has been edited by daedalus (edited 08 June 2004).]
 

Welcome to Lymenet. A lot of Lymies have trouble reading large blocks of print.

Thanks for changing your post so we can read it more easily!

[This message has been edited by riversinger (edited 08 June 2004).]
 

I know you would like this ordeal to be over with. However, you are unlikely to see the end of it after one month of antibiotics.

Possible, but not likely. Remember, I'm not a doctor, but I have known a lot of people with Lyme.

One month is the minimum recommended treatment for people with a completely uncomplicated, new tick bite which is only showing signs of an EM rash. No other symptoms.

While Biaxin may be a good antibiotic for you, one month is unlikely to be lon enough for someone who has been ill as long as you, with as many symptoms as you.

It would be well worth your time and money to get a well recommened Lyme doctor, with patients who are recovering.

Post in Seeking a Doctor, and someone will send you names.
 

I am sorry to hear that you are going through tough times dealing with Lyme. The good news here is that Lyme is a treatable disease, and I am pretty sure you will recover soon!!!

How soon? Well, that I don't know. Even your doctor will be hesitant to answer such a question. But you should be able to improve greatly in about three months. It all depends on how well your body can bounce back from infection - your lifestyle - how strong your immune system is - what your eating, sleeping and exercise habits are - etc!

Be patient!

I have lots of advice to share.... unfortunately I'm on my way out to lunch. Hopefully will get back to this post tonight! or e-mail me: [email protected]

Ta ta for now!

Ciao,
Stella

 

my hope is that the biaxin is going to be as good a starting point as any as far as the antibiotics go. i am curious about combination therapy though.

i've spoken by telephone to a dr. c in new hampshire who says he likes to combine the biaxin with plaquenil to combat the cystic form. i don't want to stress out to badly about it yet though, as i'm not sure how i'm going to respond to my current meds anyway.

[This message has been edited by daedalus (edited 08 June 2004).]
 

is one that several people from Florida go to.

He will work with you long distance, and is VERY reasonable on price.

I beg of you. You need one of the best NOW...while it is still somewhat early on.

Trout
 

In particular, be sure you read Dr. Joseph Burrascanno's Treatment Protocol and the summary of the new Treatment Guidelines.

The treatment guidelines are evidence based, and may be something you want to give to your ID doctor.

I agree with Trout, it's always good to see someone with experience. However, we have to train some new doctors as well, and it sounds like your ID guy is at least starting you out right.

However, if you start to hear things like "Post Lyme Syndrome" because you have symptoms left after one month of treatment, RUN to the nearest Lyme Literate MD (LLMD).

While I seriously doubt you will be cured in one month, I think you can reasonably hope to recover. Just hang in with the treatment. As you have already experienced, herxing can be unpleasant.

But long term, chronic Lyme disease is MUCH more unpleasant!!!

You might notice in reading the things mentioned above that treating co-infections can be very important. That is one thing a non Lyme Literate doctor may not be aware of. Has your doctor mentioned checking for Babesia, Bartonella, or Erlichea?

You are right not to stress yet. Finding your response to current treatment is important. Just be aware that there may be more ahead to learn
 

it's been 10 hours or so since i took my first dose of the biaxin.

i don't know if i should be expecting a real herx reaction yet, but i did feel a bit more irratable this afternoon, and my joint pains which have been for the most part mild throughout my illness, became much more pronounced for a short while.

i hope that i'm moving down the right path so far, and that i can expect improvement soon, even if full recovery has to wait. I know that everyone involved in this is anxious to see it end, and i feel that today has very possibly been my first real victory.

i do have one question which hopefully doesn't sound stupid, but the current regimen of antibotics i'm taking ends about a week before my follow-up visit with the ID doc.

could i expect a relapse if i don't keep taking antibiotics continuosly? i want to make sure that this won't cost me time in terms of my eventual (hopefully quick) recovery.

Kevin
 

Doctors don't usually mind taking patients off antibiotics for a day or two but when you stop medication for more than three days you run the risk of the bacteria becoming stronger and reproducing itself during these days. It's a risk I wouldn't have taken during my treatment and don't recommend to you.

I recommend you take it up with your doctor - and try to extend the treatment until the date of your next appointment.

You started off with the right medication but your doctor (if Lyme Literate) will try to combine antibiotics to help you combat the bacteria succesfully.

Remember that it is not safe to stop treatment UNTIL you have had no symptoms for at least a month!!

Again I wish you the best of luck....


 

The concern is that it gives time for the more resistant bacteria to reproduce. This has not been proven, but people do seem to do better if they stay on till symptoms have been gone for an extended period.

Once people have been on antibiotics for many months, this may not be as critical, but it's not known for sure.

You could ask your doc to extend the prescription to cover you till the next appointment. This will also give you an idea whether he will treat until you are well.

If he won't cover an extra week of medication, he's not likely to give you the long term treatment you probably need.

BTW, you can have a herx reaction at any time. A herx is caused by the bacteria dying and setting up a toxic reaction. So, as soon as those antibiotics work, you could have a herx. Hope it is not too bad.