posted
My 7-year-old boy has been on abx since November (4 months).
Dr. C said (last month) that possibly after this month or next month of treatment we could call him "normal".
He said he has a 97% cure rate. So, I thought that I MIGHT be able to stop after this month. Then, he still had the pain at night occassionally, so I thought ONE more month.
Now, I seem to be learning that 30 weeks is the big number. Dr. C didn't say that at all. I had NO IDEA!
Posts: 43 | From Austin, TX | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
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Is your Dr. C an ILADS-member LLMD? There is one excellent Dr. C who is, but there are many other Dr. C's in the world.
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This is the source of the 30-week statement. The author is an ILADS member, however, not all ILADS members necessarily treat the same:
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, I would ask the same questions as Keebler. I would wonder about a doctor who states a 97% cure rate for lyme disease. There are no tests to tell if a person is cured or not.
Has your son been checked for any co-infections? It is imperative that he be treated for those if he has them.
Generally, treatment continues until a few months after a person is symptom free but at least until symptoms are resolved.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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He just has the knees or feet pain at night about once a week.
Dr. C knows that. I wonder what would lead him to say we could stop treatment within 1 month or two (so 4 to 5 months total) if it needs to be 30 wks.
Posts: 43 | From Austin, TX | Registered: Nov 2008
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posted
Dr. C (LLMD from MO) just called me. He said that if my son was only having that one little symptom weekly that it would be a good idea to take him off abx AND if his symptoms flare up to put him back on.
BUT, he COULD be WRONG, right? I know ya'll aren't doctors, BUT WHAT DO YOU THINK???
Posts: 43 | From Austin, TX | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
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I think Dr. C is an excellent LLMD from all that I've read and I have also talked to him.
Now, the article that states 30 weeks - or another that says 4 months - and yet another that says 6 months - these might be talking about adults who had neurolyme.
You do have to weigh the effects of the meds on a patient's liver. Your doctor may be taking that into account, too. That is a huge consideration.
Remember that stopping abx is not the same thing as stopping treatment all together. There are other ways to back this up. Many of those were posted at the previous thread to this at http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/79105
Many LLMD incorporate methods from the authors at that thread. And there is still rife to consider (if it's okay for kids to use).
If your son stops the abx, there are many ways to still be vigilant about this. And, if you decide to continue, many ways to help support his liver along the way. Still, the liver has a lot of work to do and a break coming up might actually be in order.
While we are all still learning about lyme, I do breathe easier knowing that you are in the hands of an excellent LLMD. And, you might send him that article and ask for his thoughts. He might actually call the author and the two might have discussion.
You may learn that your LLMD has information that surpasses the article, too. It's always good to have a discussion about that.
When it's time for a transition, is there a LL ND (naturopathic physician) near you? I stress "LL" in that most NDs are not LL and that knowledge is vital.
posted
THANK YOU, THANK YOU, THANK YOU, THANK YOU KEEBLER!!!
That's exactly what I needed to hear. I needed to put information together in that way. I WILL continue to treat him AND give him a break on the abx. AND monitor his symptoms!
You all are always SO HELPFUL!!
Anyone else?? I'm always open to info.
AND I WILL READ ALL THOSE BOOKS AND THREADS!
Posts: 43 | From Austin, TX | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think the only way to know if you are indeed well, is to take a break from meds. In most cases if Lyme is not gone, you will know within a month and can go back on them.
I do know of a couple of people that were better after 4 to 6 months of treatment. These were people that had been ill 6 months or less before starting treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My son falls into that category. he was bit mid-october (we think) or late september. I got him on abx late november.
he does have the one symptom weekly. So, I don't know how significant that is.
Posts: 43 | From Austin, TX | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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For a patient known to have lyme, any symptom that is clearly related to lyme is significant. However, can you tell that symptom is from lyme or is it from the medicine or a herx?
Was that symptom around present before treatment began? Is it a symptom that is unique to lyme itself?
posted
It REALLY is hard to tell if its Lyme related OR growing pains OR herxing OR meds.
I get SO CONFUSED!
He did have some knee & foot pain before, but not as often. I just don't know!
Posts: 43 | From Austin, TX | Registered: Nov 2008
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TerryK
Frequent Contributor (5K+ posts)
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posted
I know Dr. C. has a good reputation.
Personally, I would want to know why he thinks the knees and feet are hurting if they aren't active infection. Lyme loves the knees and that would worry me a little. Odd too that the symptoms come in a weekly pattern. Does he have a theory about that? He may have some good answers for you.
I think children have the best chance of beating this illness. Your son is very lucky that you are being careful and asking questions. If you aren't already, I'd keep a log of symptoms so that you have a written record.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I might need to give him ANOTHER month of abx. If so, what can I do to support his little body to handle such abx for so long???
I have a lot of reading to do, but I also have 7 kids in my care & a mentally disabled husband & a full-time AND part time job so ANY QUICK INFO would be MUCH appreciated.
Posts: 43 | From Austin, TX | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Is he taking probiotics? That is a must!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
No, the LLMD didn't suggest it. He's on nystatin.
I'll buy them tonight! What else is a danger of abx?? Keebler mentioned the liver?? what can I do about that AND what ELSE might be a danger???
Posts: 43 | From Austin, TX | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Nystatin will help against candida/yeast from abx use. Probiotics, too, were suggested for that and because they also help the immune system in other ways.
I am not educated enough to know how to guide a child's support. However, the Singleton book is the single best guide for patients, in general.
Did your LLMD offer you a list of suggested supplements when your son began treatment? If not, can you request such a list from his office?
Ask about using "milk thistle" for a child and with the specific abx that are being taken.
Children can be resilient. With lots of good veggies of all colors and dark berries - and enough protein - his body may be doing fine. Protein will help the liver, too, in that it helps it make glutathione. The colors of veggies and berries will help take out toxins and the bulk from food will help the colon move it all out.
So, much support is accomplished just by healthful living.
posted
Jessibell.. Dr C always recommends that his patients be on probiotics.
Also, he does not claim a 97% "cure" rate. He states that most (not sure of the %) of his patients GET BETTER... never uses the word "cure" that I am aware of.
I've been his patient for 8 yrs, though I've been off abx for the past 4 1/2 yrs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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