LymeNet Flash: how do you know you're better?

This is topic how do you know you're better? in forum General Support at LymeNet Flash.

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Posted by mik (Member # 7261) on :

Our 8-year-old has had lyme for two years. He was treated unsuccessfully initially and now has just started cats claw, atimisinin and ultra-flora. In the fall he will take a strong course of antibiotics. He had a rash of nasty symptoms this winter, but has been pretty healthy all summer (a few upper respitory issues). His lyme test numbers were high according to our llmd. My question is this: How will we know when he's better?. I've read that you wait until your symptom free and then some. Do we give him the blood test again after his course of treatment? Can we hope that it will come back negative? Will it stay negative? Oops...I guess that's four questions. Thank you

Posted by minoucat (Member # 5175) on :

Hi mik. You might want to post this in medical -- many more people will see it there, and those with children can give you a better answer than I can.

I don't have kids, so I can only tell you what my LLMD told me for adults: exercise tolerance is a key indicator of recovery. I know this to be true for myself. I started exercising seriously about 5 months ago. At that stage I was weak and nauseous after almost any short, light workout. I can now tolerate a great deal more exercise without being laid out -- and many other sx have resolved completely, too.

I'm one of those people who hardly ever tests positive on the Western Blot, so I can't go by bloodwork (I haven't used Bowen, only Igenex). I do keep a symptom chart that has been very helpful in assessing my progress, but in my anxiety to convince myself I'm well I need objective markers, like exercise tolerance.

[This message has been edited by minoucat (edited 28 July 2005).]

Posted by cootiegirl (Member # 3216) on :

Since lyme is a clinical dx, if you look at the symptoms one has with the disease, then it makes sense that the absence of the symptoms tells you the person is getting better. So as you see your child's symptoms decreasing, he/she is improving.

Most docs will do bloodtests as a course of action - they won't really tell you if the lyme is gone - since they really didn't tell you the lyme was present! But patterns may emerge with bloodtests. Your child may have a positive lyme test during treatment when before they were seronegative. That gives the doc an idea that maybe the buggies have been forced out into the bloodstream with treatment. Also other body systems need to be monitored thru bloodtests.

So there's no real hard and fast answer to your questions. If you have confidence in your llmd, they will give your child the best care and do their best to get him/her well.

Just as an aside....has your child been tested for coinfections? You want to make sure all bases are covered.
cootiegirl

Posted by NP40 (Member # 6711) on :

Hi Miki, Mike here. The general consensus is that you treat until symptom free, and then an extra 6-8 weeks of abx to make sure you've gotten it.

Jess is on biaxin and flagyl [cyst buster]. IMHO, the cyst form of lyme is why people constantly relapse. The cyst form lies dormant, unaffected by normal abx, symptoms disappear, and a few weeks later the Bb comes out of cyst form to raise havoc again.

I really believe that some type of cyst buster needs to be used in near-end treatment to eradicate the disease.

You've got a great LLMD, and your little guy isn't near his end treatment yet, but it's something you could certainly discuss with him down the road.