posted
I have recently been (sort of) diagnosed with Lyme through a minor emergency doc that did a lyme panel and the lyme part came back with an above normal.
The doctor said even though the number was not real high she said she was going to treat it as lymes and and gave me a months worth of antibiotics (Doxy)but that is how she left it.
I then did a lot of research and found that I needed to get a 'real' LLMD. Which I have done (Dr. C but it's not till Oct. 25) Anyway I was coming to the end of the month of antibiotics and I started feeling horrible with swollenglands. So I went back to the minor emergency doc (another was there instead of the woman doc that determined Lyme).
I told him I was feeling really bad and had taken my last antibiotic. Could he please give me another round? Well, he didn't really want to but did and said that he was going to run the lyme part of the tick panel to see if the number was the same. It was down from 0.56 to 0.51. I got a call today from some clerk that said to me we have your lyme test and your number is down. You no longer have Lymes. I said, that's nice.
I will continue on my journey to see Dr. C. as I think it's odd I feel as bad as I did when I started this journey about five months ago. Keep in mind I am totally illiterate as to what all these numbers and tests mean but I will learn. I do know that the test the doctor gave me originally is not the standard test for Lyme called the Western Blot.
So I guess when I run out of the next months antibiotics which is two 100 mg. Doxy per day, I will have to beg some other doctor to give me a prescription. Maybe my family doc. He didn't find the Lyme, nor did the infectious disease doc. But I think family doc would cooperate on giving me enough till my appt.
Sorry, everyone, I'm new to the boards. I tend to ramble and I just needed to vent today. People just do NOT understand this crud and I am only beginning to.
I wish all of you well.
Mrs. Cranky/Kiwikid
Posts: 44 | From Oklahoma | Registered: Aug 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi Mrs. Cranky, you have many relatives on this board who share your name! LOL Sometimes cranky and Lyme just go together so well.
It's good that you are seeing an LLMD who will know how to treat you. It's good that you are on doxy till then to help stop it from getting worse, but at the dose you are on, you are not going to see much improvement.
Typically the dose for Lyme is 200 mg. twice daily!!! That may be difficult for you to get prior to your LLMD appt.
You are so right that the medical field just doesn't "get it." You are SO lucky for that woman doctor who found Lyme in you!!! Many of us have a much more difficult time getting diagnosed ... we only find it through our own research on the internet.
It's also good that you came here ... keep reading and asking questions. Welcome.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
That's pitiful. What you most likely had was the ELISA test. It is VERY notorious for missing Lyme. So if it was in any way positive, you can take it to the bank!
Just because the number is down, doesn't mean it's gone. THE MAIN THING TO CONSIDER IS HOW YOU FEEL!!!!
If the symptoms are still there, you still need to treat....simple as that.
Most drs do NOT want to get involved in treating Lyme patiensts. Their licenses are at stake. Some actually believe that what they are telling patients is the truth.
Do what you have to do to get the meds you need. I really wish you could take a higher dosage so it will actually do some good for you.
Why don't you call DR C's office each week and see if they have any cancellations?
posted
Sixgoofy, when I went back to that doc to 'beg' for more antibiotics the other day, he made the statement that "100mg. Doxy twice a day is the standard dosage for Lymes". I said o.k., I knew there was no way in hell, I could say, how about amping it up to 200mg. twice a day? I do know that much from my litle amt of research.
But I already knew I was going to go to LLMD and didn't mention it to this guy. No reason to. Doesn't care. Most don't. Thanks for response!!
Posts: 44 | From Oklahoma | Registered: Aug 2007
| IP: Logged |
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[lol]](graemlins/lol.gif)
Sometimes cranky and Lyme just go together so well.
Printer-friendly view of this topic