My 7 year old son has had 3 positive Western Blots since Nov. 8th. We think he was bit while camping in mid-Oct. He's been on abx since Nov. 26th (3weeks of amoxicillin prescribed by his Infectious Disease MD) and now zithromax (prescribed by Dr. H in WI) since Dec. 8th. He had bad joint pain in Nov. but very, very rarely has any pains now.
He is going to see Dr. C in MO on Feb. 25th. He looks good and has practically no symptoms, BUT I'M AFRAID IF HIS IMMUNITIES ARE EVER LOW THAT HE WILL SUFFER GREATLY LATER IN HIS LIFE.
I WANT THIS ORGANISM/Bb/SPIROCHETE ERRADICATED FROM HIS BODY!!!
My question is...with no symptoms and 6 months of treatment, who here thinks that I might be able to have killed it and never look back?
What am I asking of Dr. C? MY GOAL IS HAVE MY SON SYMPTOM FREE FOREVER.
I know there are no guarantees with this thing, but what do you think?
Posted by liesandmorelies (Member # 15323) on :
Everyone's goal is to be symptom free. I think you are doing the right thing by going to Dr. C.
You should tell Dr. C exactly what you wrote here. He will know what to do.
If you son has any Lyme lingering symptoms now, even if they are only rarely showing their dirty little selfs, than Dr. C may want to do something more. I personally believe in treating this beast very aggresively esp. in the beginning.
Tell Dr. C that you want to do everything and anything possible to make sure you killed the bacteria.
Good luck and I will send your son prayers.
Posted by sutherngrl (Member # 16270) on :
I agree, tell him exactly what you said here. The doctor will know what to do.
Posted by Jessibell777 (Member # 18235) on :
I really WANT to treat it aggresively, but he's so little, I'm SCARED that an aggressive treatment might damage his body is some OTHER irreperable way. AT THE SAME TIME, I want him to have a life free of suffering the effects of LD. I just need to do this RIGHT. SAY the right things, GO to the right LLMDs, GIVE him the right medications and herbs and diet.
Posted by groovy2 (Member # 6304) on :
Hi Jessibell
I am in Austin Too --
Dont worry about the effects of the ABX - Really no need to worry about them--
Just get your son to where he is symptom free for several months and he will be OK --
If you want to talk to someone here in Austin PM me and I will give you my phone number-- --Jay--
Posted by Keebler (Member # 12673) on :
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I don't think you need to worry about Dr. C. You will not need to convince him to be sure to take the very best care that your son has the best chance to have this become history. He knows.
You can simply say what you've said here, as others have said. He is a kind and intelligent man.
Years ago I called Dr. C, hoping I'd be able to travel to see him. I was not able to, however, from the few conversations I had with Dr. C, I was VERY impressed. He cares deeply about his patients and it seemed that if I were to be able to get there he would have taken into account my specific case and treated accordingly.
In retrospect, my worse mistake was not finding a way to make that happen. He took the time to call my GP and suggested a few tests regarding thick blood. He was correct. I had the markers he had guessed.
He is highly educated in this field and (if I recall correctly) had some understanding of the supplements that help the body get through treatment. You might ask specifically about that.
In the meantime, Singleton's book will be of help (I'll link below).
We all want to treat this aggressively and we want to eradicate the spirochete. In order to come to terms with treatment, it's vital to learn a great deal about the spirochete.
It's a intense science lesson but without "going there" it would be impossible to work smarter. Working harder (blasting it) is not necessarily the way to approach the various forms of spirochetes.
As your son is doing better now, that's great. I think it's wise to keep that appointment, even if you son is singin' and dancin' - you need the followup.
Your son may also need further assessment for coinfections - just to be sure.
According to some experts, 30 weeks' treatment for lyme is minimal.
excerpt: " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
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I did not notice that your son had any Rx to address the cyst form of lyme. Was he ever on flagyl or it's generic?
Still, there are some others who have done okay with less - and even without flagyl. So, your son may be fine from here on out yet I think it's wise to check in with Dr. C. as his experience and reputation are exceptional. He is clearly one of the best from the conversations I've had with him and the number of patients whom I've heard did so much better under his care.
Good luck.
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Posted by Keebler (Member # 12673) on :
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Resources I list are not so that you can educate the doctor (as often is necessary). Dr. C knows all this and much more. However, I don't know what you've read, so hedging my bets, I'll post some of the most important sources for better understand.
Also be sure to look at the medical abstracts - menu to the left. And, in the NEWBIE links, you will find other links to better understand how the spirochete works.
I don't know of any doctor or researcher who says the spirochete can be fully eradicated. Still, wellness can be achieved so don't give up. And we are learning more each day.
you can order DVDs of the ILADS seminars, very helpful.
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Alan MacDonald and Garth Nicholson are two top researchers whom you may want to search. MacDonald is key to understanding the biofilm of lyme. Nicholson key to the stealth nature of various chronic infections and how to work around that stealth nature.
If you want links to these two, let me know, but I'm too tired to pull them from my files right now. I may come back later and add those.
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This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
Even if you don't take this path, this book is essential to understanding more about lyme and ways to support the body during treatment. I am torn, however, in that he does not address the cyst form.