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Positive For Lyme


ariella
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I am sorry your tests came back possitive, but at least now you have something to go after and hopefully recover from. What bands were possitive on your Western Blot. Just curious, mine had possitive and some IND bands. I will be keeping you in my prayers.

Take Care

Kim

Kim, I'll PM you. I hope you are improving with treatment?

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Ariella - I'm sorry to hear you have lyme, but happy that it showed up on the test results for you. Keep us posted on how it goes with the lyme doc. Hopefully you're treatment will be headed in the right direction now - getting you to feel better :unsure:

Pam

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I'm sorry you have lyme, but glad they found it so you can start on treatment.

My thoughts are with you.......

Take care,

Amber

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Unfortunately hitting a little red tape in terms of treatment. PCP is misunderstanding significance of results, as I am positive for current infection and negative for exposure. Lab says that it's typical of late stage/chronic lyme. Pediatrician says the same. PCP is misinformed, and he is the one who needs to order treatment.

Very frustrated...but working on it! Didn't come this far only to drop dead knowing why!

Even PCP says that "if" this is lyme (which has now been established in bloodwork), I have neurological lyme. If that gets left untreated, my friends, I can develop some serious psychiatric symptoms!

One interesting thing, spoke with the doc at the lab, he said that he worked with a doctor in Israel--guess who? The first neuro I was sent to to rule out MS! Small world. This dr. was my dr. up until my POTS dx.

Middle of the night here, gonna try to go back to sleep.

Thanks for everyone's good wishes. I'm not going anywhere so fast---POTS symptoms are raging now!

Ariella

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Sorry to hear about you finding out its lyme's but, I don't know about you but it was almost happy as I might find a treatment that might start helping. I started antibiotics about 3 weeks ago for Lyme's. I am having some better days, and my bad days are not as bad as the use to be. I still am having them, but not as bad. One thing I have found as I am having alot of muscel pain, put I am having more energy, so I guess I can deal with pain to at least be out of bed! Please keep us posted on hoe the med help? What antibiotics are you taking?

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If there's a concern for neuro symptoms of lyme, it might be wise to test your CSF as well. I realize lumbar punctures are pretty icky but finding evidence of lyme disease in your spinal fluid would point more strongly towards agressive treatment. Like all lyme tests, it's not perfect, but it's pretty good. If you're really scared of the test, they can give you medicine to make you less anxious or do it under flouroscopy (a fancy x-ray) in some hospitals (that's what I do)

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Ariella,

I am thinking about you...and very sorry I haven't gotten to reply to you more. I'm honestly a bit out of it myself--feeling poopy as Lauren would say!

Anyways, I hope you will be able to work out treatment soon...

I, too, at this point have neurological symptoms and lyme that has penetrated to that level. We did not see any reason though to do a lumbar puncture.

Hoping this will be your path to feeling better and getting the treatment you need.

Goodnight.

Emily

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Read in "the guidelines" that lumbar puncture is only accurate for neuro lyme in late cases such as mine in only about 13% of cases, even when meningitis is involved. Discussing it with the dr., but to me not worth the risk. My experience is that although a test is known to have only 13% reliability, if it is negative, it will be used to "rule out".

Doesn't sound too scientific or therapeutic to me. Anyhow, if I'm being treated anyway, not sure what even a positive LP would add to treatment.

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Ariella,

That was mine and my doctor's decision also. Not worth the risk. Had enough evidence otherwise for Lyme and were at a deadend otherwise.

Boy, I am laughing at our posts...so cryptic for us...you can tell we have no energy! Poop!

There are so many other tests like Brain SPECT scan, neuropsych testing etc, but nothing really can rule it in or out very well...they are more non-specific tests. Like, most people with Lyme do ahve an abnormal SPECT scan, but it doesn't point to Lyme.

Some Lyme docs use the lumbar puncture, others do not. Mine does in SOME cases, but I felt he was reasonable about when to and not to do it. We didn't want to put me through it, given my other signs, symptoms, tests...

Time for my nap...

Emily

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Guest malosp
results are in. glad they found it, as POTS meds are no longer working and I'm a mess.

Getting a consult with a lyme doc.

Ariella

Ariella,

Congratulations on finding out the cause of your symptoms. If you don't treat lyme, if you have it, you will not get better. And your tests results sound like they confirm that you have lyme.

Now you can finally treat the cause of your symptoms not just treat the symptoms. So be happy that you have finally figured it out.

No, it ain't gonna be easy but you can get well. Most of my POTS symptoms are gone now. No I am not totally well, but I know if I wouldn't have started antibiotics I would even be worst by now.

And I just took the poll and I am one of the 9% who can work with my POTS mildly affecting me now.

Hang in there.

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