I am new to the Lyme community. I just found out this year that I have Lyme but, I live in Kentucky and treatment here is very slim.
The RA doctor I just saw did the WB test and doesn't feel it was strongly convincing so he said no further testing or treatment until more symptoms arrise.
I am in search of a new dr. as to not end up in severe poor health like my mother. I think she also has Lyme but is being treated for Lupus, RA, Raynauds, Crohn's and Heart DIsease.
Anyways, he gave me a script for Lodine for the swelling on my knees. Has anyone else had to use this?
The pain and swelling in my knees is getting worse everyday and I am scared to take it until I know other Lyme pts have used it.
All I know is that it is an old drug and that it supposedly works? Any feedback? Lynnette
[ 02. May 2008, 12:32 PM: Message edited by: Lynnette ]
Posted by Lymetoo (Member # 743) on :
I took it for many years before I found out I had Lyme.
My LLMD does not like to give anti-inflammatory drugs to his patients. He believes they can cause further damage to the joints.
I DO know they will eat the lining of your stomach!! At least Lodine will!!
Welcome!!! Posted by Cass A (Member # 11134) on :
Best to treat the Lyme.
Have a look by searching for BEE VENOM. It was discussed here recently.
Some of the topical bee venom cream might help your knees and work on the Lyme at the same time.
Best,
Cass A
Posted by Lymetoo (Member # 743) on :
There's also Bio-Freeze gel. Relieves pain!
Posted by jamescase20 (Member # 14124) on :
I self treat...minocin is cheap and a front line drug for lyme disease. Use at your own risk. I found the same probs. U can see a natpath doctor that has a live blood microscope and have them check the blood for keets,(aldult lyme) fast swimming dots ( babs, bart, etc) lyme babies (hovering in only certain area slowly hover)
Posted by Lynnette (Member # 15344) on :
quote:Originally posted by Lymetoo: There's also Bio-Freeze gel. Relieves pain!
Is this gel otc? If so where do I get it.
Posted by Lynnette (Member # 15344) on :
quote:Originally posted by Cass A: Best to treat the Lyme.
Have a look by searching for BEE VENOM. It was discussed here recently.
Some of the topical bee venom cream might help your knees and work on the Lyme at the same time.
Best,
Cass A
I will definately bring that up to my next dr. Is it something you get from the dr.? I wouldn't even know where to get it?
Posted by Lynnette (Member # 15344) on :
quote:Originally posted by jamescase20: I self treat...minocin is cheap and a front line drug for lyme disease. Use at your own risk. I found the same probs. U can see a natpath doctor that has a live blood microscope and have them check the blood for keets,(aldult lyme) fast swimming dots ( babs, bart, etc) lyme babies (hovering in only certain area slowly hover)
Thank you for your help. How do I look for "natpath" dr's in my area. Ky. is VERY limited as I am finding out.
Posted by daise (Member # 13622) on :
Hi Lynette,
Welcome!
I wanted to look over your past posts, since you are new and there were only 5 shown on your post. But actually you've posted 37 times!
quote: Lynette wrote:
The RA doctor I just saw did the WB test and doesn't feel it was strongly convincing so he said no further testing or treatment until more symptoms arrise.
What he said and what is actually reality, may possibly have a deep, wide abyss between. Do you have a copy of your WB? You could post the results in a separate thread, if you like. Others with expertise will jump in, to give their input.
It's important to know where the test came from. If not from IgeneX it's likely no good.
Most of us have tests done. But Lyme remains a clinical dignosis, due to the difficulty in testing.
Do you know about finding an LLMD for proper assessment? You may post for an LLMD in the Seeking A Doctor Forum. OK? I know it's harder and more expensive in the middle of the country.
But yes, for most, indeedy do we do get help. It often takes time. OK?
Have you looked into insurance? For example, if your insurance won't pay for an LLMD and they turn you down for a lot of Lyme meds, perhaps this link will help:
Yes, I'd look to LymeTuTu about Lodine. I don't know about topicals.
daise Posted by Lynnette (Member # 15344) on :
I wonder why it says I have posted 37 times? Oh well, who knows.
I have someone looking over my so called results as we type and no they weren't done by the I name you mentioned. 'Quest Diagnostics'
I go to a different dr on Monday I will be taking some notes in with me.
Posted by METALLlC BLUE (Member # 6628) on :
Quest is worthless, for the most part. At least in late-stage Lyme Disease, as well as co-infections.
You can post your results here L, it's ok. I'm on both forums, so if you want a wider selection of opinion, here is fine.
Also I just came across a natural anti-inflammatory that may be up your alley. It should not interfere with your immune system in a negative way. It's called Serrapeptase. You can purchase it through many sources, and many suppliers, but Nutrimedix is a good source. You may consider using Vitacost to find if it's on there.
Another brand my girlfriend uses is Enerex.
Posted by daise (Member # 13622) on :
Hi Lynette,
Yes, Quest does a bad job. IgeneX Western blots are the gold standard. Even then only about 40% test positive, so it doesn't catch most people.
That's why Lyme remains a clinical diagnosis.
When I saw that you'd posted 37 times, that meant that you must have received the important newbie information.
Have you rec'd BettyG's newbie package? It's a huge email for your computer and can be searched for all kinds of information.
Simply send a private message (PM) to BettyG by going to the top of her NUMEROUS posts. To the right of her name you'll see an envelope with two people standing next to it. Click that.
If you haven't been properly oriented as to the different types of tests and as to the politics and getting a Lyme-literate doc, please send me a PM. OK? I'm glad to help.
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