posted
Hello, I just posted this, but for some reason on my computer it seems to have mixed it up with another topic. Anyhow, I have had joint pain since last 4th of July. At times pretty severe and at other times hardly there. They have run all kinds of tests, all coming out negative, and finally someone reffered me to a rheumatoligist who ran a lyme test. I just find out today that it came back positive for Lyme disease. The problem, well one of the problems is my doctor was dealing with just recieving news of a death in the family so he was rushed and didn't explain much. Secondly, since I have already been on doxycylcine for the last 3-4 weeks with not much difference, he is prescribing IV antibiiotics for 14 days. I also have a grandmother who may or may not live that long so I have a call into the docs office to see if there is any alternative that would enable me to fly home if need be. I really know nothing about lyme disease except as my brother said it has to be better than lemon disease. Got to love that one. I'm doing internet research and such currently. If anyone can let me know what to expect, long term ramifications, major obstacles to overcome or just issues in general I would appreciate it, along with any advice. My guess is I have had this for almost a year now. Thanks so much Michelle
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Mowanda
Unregistered
posted
Sorry one other question, how accurate is a lyme test? Should I be re-tested? Thannks, Michelle
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Mow...
Glad you dropped by. Sorry you are doing poorly though.
We are NOT doctors.. just folks who try to help others. This is NOT medical advise.. only suggestions. And MY opinions.
1. The doxy dose you are on may be too low. Normally the inexperienced doctors prescribe 200 mg. a day... and that isn't even the minimum recommend dose to hit Lyme disease. UNLESS, of course, you are 2 ft. tall and weight less than a loaf of bread.
2. If you may have had Lyme for a year.. then 2 or 3 weeks doxy at any dose won't come close to doing what is needed.
With the 200 mg a day dose... you are, right now, at the, "I have not yet begun to fight" level.
3. I understand the IV delima... and traveling.
My thought would be to try and up the dose of doxy according to your weight.... and hang onto your socks at the one month mark cause you may suddenly "feel it" and symptoms may worsen (herx).
Watch for yeast problems... cut sugar in your diet... and consider IV's ONLY if and when a course of oral antibiotics is given a fair chance to work... and it fails.
As for the Lyme tests..
If positive.. you can be fairly sure you have it.. especially when symptoms are hitting you also.
UNLESS.. of course... you are 2 ft. tall and weigh less than a loaf of bread.
Kind of like a pregnancy test. You can't be "a little bit" pregnant.
And don't bother being retested... not now. After being on antibiotics the tests COULD be messed up. It would be a waste of your money and time.. and could back fire.
Hint.. don't let them talk you into a spinal tap either.
Hope that helps some?
And please tell your brother he is right! That lemon disese really sucks.
posted
Thanks so much I appreciate the info all of it. As for the anti-biotics, my doctor said I can do shots instead which is supposed to be painful but will leave me free to travel. My mom almost feels that I should just take the IV and not worry, but I think I would feel bad if I could have had the shots so I could make it home. I'm trying to read as much as I can, I appreciate your advice it gives me a starting place, all this is new terminology and such. I appreciate the advice on the tests also. I'm going to do a lot of reading tonight and I'm supposed to meet with the paitent advocate tommorow to go over the plan they have for me. It is rather confusing because I'm using military healthcare, but the don't have a rheumatoligst on base so I"m using a civilian doctor of their chosing. This way I may have more of a clue when I meet with them.
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
If your rheumo is giving you 14 days of IV, that means he's reading it out of the manual. Unfortunately, the manual only applies to those with very short-term lyme. Caught within a couple of weeks or a month.
You've had this since July 04, so 14 days of IV won't even make a dent in it.
My son's symptoms manifested in Oct. 04, and he started treatment in Dec.04. He did one month of doxy 400mg per-day, with zithromax, and omnicef thrown in. It did zero.
He's going on his 3rd month of IV's and he's just starting to show some slight improvement. It can take a while, and note, that my son felt worse initially, taking abx, and then started to feel better.
Good luck !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
A copy of this is stored in computer Help section.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Michelle,
Welcome. I'm so sorry you have Lyme, but you've found a good place in this board.
You should take a positive Lyme test as a definite that you have Lyme. As I'm sure you've learned from all the reading and resources people have given, Lyme isn't a short journey. Read all the links and learn as much as you can.
-Aniek
Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Mowanda
Unregistered
posted
Thanks, I need the reassurance
Just got off the phone with my mom who said that my dad and feel that is a incorrect diagnosis, they know nothing about lyme though.
I was also told that even though I have seen research that shows that some of the symptoms I thought were jsut caused by hormonal issues that i have had for 9+ years (I still think that could be a possibility) had no way of being lyme.
I tried to explain that I agree it could be something else but I needed to look at it as a possibilty and my doctor felt the same way.
Oh I'm also freaky out.
Yeesh I'm so glad my husband is as wonderful as he is and I have friends that have taken the oppurtunity to make every dumb joke up they can about ticks and lyme to make me laugh.
My mom will settle down in a bit. Or I may have to remind her of some of her emotions when she was diagnosed with cancer a few years ago.
posted
The Lyme tests have lots of false NEGATIVES, but if a test indicates a positive... you have it.
One thing about doctors who are not used to treating this... they tend to view 3 or 4 weeks of an antibiotic like Doxy without marked improvement a treatment failure.
For a reference point we are expecting to be on antibiotics of some kind for at least 18 months.
Nothing could be farther from the truth. It often takes many months to start feeling better. 4 week on orals os not time to give up on them and assume the only alternative is IV's.
Doxycycline is useful, especially initially. Minocycline, a close cousin to Doxycycline is better IMO as it crosses into brain tissue alot better than Doxy. You are likely to find 200mg of Mino does more than 400mg of Doxy... and you will have to work up to the 200mg gradually. This is the same stuff dermatologists prescribe for acne, by the way.
The Zithromax you mentioned is excellent (though expensive), and so is its close cousin Biaxin.
Others, after some initial treatment, have done well with injections of a slow release penicillin once or twice a week, either alone or in combination with a macrolide like Biaxin. (This is the Bicillin that you will see mention of now and then.) Since it is such a low steady dose it is gentle on your body chemistry, but it is a little rough on the backside getting it as shots.
The important thing is to find something that you tolerate well so you tolerate an extended treatment and still be able to get on with your life.
There is no point in almost killing yourself with massive doses of the most toxic antibiotics around. All that will do is weaken your health while the spirochettes just hunker down and wait for the antibiotics to be over with.
It will take some time. Slow and steady, while doing anything else you can at the same time to improve your overall health.
[This message has been edited by James H (edited 09 March 2005).]
Posts: 714 | From San Antonio TX | Registered: Oct 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
If you're relating to symptoms you may have had nine years ago, I would think there is a very good possibility that you have had Lyme that long???
Don't know why so many people just don't believe in Lyme Disease. It's not like believing in the Tooth Fairy.
I agree that 14 days of IV is probably not going to do anything much, and neither is 200mg of doxy. I hope you can get to see a doctor who is more Lyme Literate and can help you more quickly and effectively.
Good luck.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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Mowanda
Unregistered
posted
Well my doc swtiched me to another round of doxycylcine, I'm wondering if the dose is too low, but i guess it is a starting point with a round of Zithromax. This avoids the IV drugs for a bit and from what I have read seems to be a better treatment plan
I also talked ot him about switching from the rheum who diagnosed me to another doc.
My rheum's father in law dies right before diagnosis, maybe because of that but he prescribed somethign I can be allergice too along with not returning phone calls about it. Left 2 or 3 messages with the nurse yesterday. No message today.
Everyone makes mistakes, but at least return a call
We will see what I hear back.
My boys got blood drawn for their lyme test today. They were very brave and I'ms o proud of them for it.
They are also switching to a peditriacan to start managing their case and weeding through symptoms and test results and all that jazz. They were seen by flight medicine before.
I guess all in all I'm happy. It isn't a great place but I feel we are at least in a good starting place.
Monica, I agree with you, the symptoms could all be lyme. I mean I don't at anytime well since I was a little kids recall getting a tick. (I had quite a few of them) Suppose things could possibly even go that far back, but I'm doubting it.
THere is another explaination for symptoms, I can agree with my mom on that, but that doesn't mean we can disregard the possiblity is all because of Lyme. Besides sometimes she is just whacked.
And my doc doesn't want to disregard the possibility either.
Oh well that's parents for you
When I get my energy level back up a bit, started crashing some this week, too much stress again. I'm going to print out articles on lyme and send them to my mom.
Okay thanks everyone for the advice, I am reading all of it and seeing how it can work in my situation with my docs. Thanks agian
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