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When should I retest

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Posted 9/13/2015 2:07 PM (GMT -5)
Like I said IGM 31 and 41 IND
IGG 41 and 58 +

I tested this way about a month and a half after I was bitten and had not taken any antibiotics.
I have now completed a month of Ceftin and Biaxin.
I have a visit to my Mom (83) planned and wonder if I should wait a month to re-test or test before my visit.

What would you do?

I think I am tired of making decisions. I just want someone to fix me. lol

Thanks,
Annette
Posted 9/13/2015 2:29 PM (GMT -5)
Hi Annette,

I think you might need to take a break from your antibiotics before you retest. Please check on that.

If you don't mind me asking, is your LLMD going to continue to treat you even if you are not IGENEX positive? Is he just looking to back up a clinical diagnosis? OR, does he not think you have Lyme?

I believe I know who you are seeing. Lyme is a clinical diagnosis. I hope he is merely trying to back up a clinical diagnosis.
Posted 9/13/2015 3:23 PM (GMT -5)
I agree with Lymie Girl, especially since band 31 is Lyme specific (if you need to see links that show this, let me know!).

So it depends on why you are retesting. You should be getting treatment with the results you have. Retesting won't necessarily bring you better results, and could end up with less bands showing positive or IND. as that's fairly typical too.

I think the recommendation is to use abx for 6 - 8 weeks, stop for 3- 6 weeks and retest though. You can call Igenex and ask.
Posted 9/13/2015 4:00 PM (GMT -5)
LLMD says it doesn't appear that I have Lyme and asked if I was ever bitten before. I asked my Mom and she said I was the healthiest child she has ever seen. I barely got chicken pox and never complained when I had the mumps. I played in the foothills of CA in poison oak and never got it. Super immune system. Camped all my life and was a girl scout and never once was bitten.

LLMD says "let's test for co infections because I do not think you have Lyme."

I am so torn. Everything I read says co infections are horribly hard to test for.

Thank you for your input. I will call Igenex. Thanks over and over for this site.

I think I will finish this round of antibiotics and see what happens. I hate to spend another $105 just for my LLMD to see IND and believe that instead of me.
Posted 9/13/2015 4:05 PM (GMT -5)
PeteZa - I, too have led a healthy life...which is to me all the more reason that Lyme diagnosis made sense.
How could I be healthy until the fifth decade of life...and then have at least 5 different causes all hitting me at the same time:
menopause, pinched nerve in neck (not showing up on mri), frozen shoulder, anxiety, sleep apnea, - and those didn't explain all of the symptoms.
Posted 9/13/2015 4:18 PM (GMT -5)
I really disagree with your doctor. I don't know your symptoms, but 31 is specific for Lyme. As Traveler said, 58 pops up in European strains of Lyme. Testing for co-infections is less reliable than Lyme.

You don't have to remember a tick bite to have Lyme. The nymphs are so tiny. I don't remember a tick bite. I have Lyme and Co.

If you would like help finding another doctor, you can email me. My gut is telling me this is all wrong. I want you to get the treatment you need. If he is going to continue treating you that is okay. It is up to you. I don't want you to suffer. It makes it more confusing for you. It should not be.
Posted 9/13/2015 4:41 PM (GMT -5)
I am emailing you now.

I honestly have a very high tolerance for pain, EXCEPT the head pain in the back of my head and the swollen lymph glands and the ears being full feeling.
Posted 9/13/2015 4:51 PM (GMT -5)
I agree with Lymie Girl - I think it would be wise to get a second opinion. Something doesn't add up with this Dr.
You don't want someone questioning your diagnosis...because then you will, too.

The first thing my LLND said to me when I walked in the door was: "So, you have Lyme disease".
No questioning it... and that's what I needed to hear.
Posted 9/13/2015 5:13 PM (GMT -5)
I emailed you back. I hope I can help. :)
Posted 9/13/2015 5:43 PM (GMT -5)
Well, I'm not sure what your doc is waiting for to determine you have Lyme disease. As has been explained, you have 2 bands that are Lyme specific. Not sure what more she needs to see???

And as for the size of a tick- just about a month ago, I had gotten into a nest of seed ticks - or nymphal ticks - and they honestly looked like my legs had gotten wet (but I was wearing long pants), and someone had thrown ground black pepper on my legs - they really were that tiny. It took a strong magnifying glass to be able to see their legs!! To say that they are as small as the period at the end of this sentence is no joke.
Posted 9/13/2015 6:21 PM (GMT -5)
Thanks all and Lymie Girl I am going for a second opinion! Thanks for getting back to me. As for the Bay Area, shucks this mountain girl gets nervous driving in Rocklin. lol
Posted 9/13/2015 6:55 PM (GMT -5)
LOL!! Don't feel bad, this country gal hates driving in a town of only 20,000!! LOL! I'd much rather stick to my little town of 2,000!! Hang in there!! And do let us know how you are doing and what's happening with your doc. Best of luck!!
Posted 9/14/2015 4:50 PM (GMT -5)
I'm happy to help PeteZa! I just figured out your screen name! How cute. I feel so brain challenged! :-p

I agree about driving. The freeways here are a mess. Please let us know how your appointment goes! I hope you find the right doctor. :)
Posted 9/14/2015 9:20 PM (GMT -5)
I have an appointment in 2 weeks for a second opinion. I just don't think waiting for any length of time with lyme is good. I also called a woman in grass valley that lives in the bay area and comes up here once in awhile. No answer today, but heck the more information, the better.
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