been on and off this site for over a year and half. Son (20) still doing terrible, worse since diagnosed in 12/09. Seeing 2nd LLMD and been on IV doxy 400 mg daily since 9/10 and now also taking Flagyl 1000 mg. daily. My son hasn't gotten any better at all and now won't sleep, still doesn't talk, only mental issues, nothing physical, at least none that we know of since he can't convey anything to us. Completely brain fog/confusion/memory loss. Can't leave him alone, gets lost in our home. My question: What in your opinion is the best and quickest detoxification product/method I can implement. I'm thinking that the flagyl is killing off more than he can handle. We've been using cat's claw (20 drops nightly) and detox drops (15 3x day) as given by our LLMD for about 3-4 months now, not sure if they're doing anything. Trying to give him a good diet, no sugars (or at least not much). I think we should/can be doing more. Any help would be greatly appreciated on anything that has worked for you. We're staring to become extremely discouraged, nothing seems to work.
posted
So sorry that your son is struggling. Unfortunately, I cannot offer anything to help, but echo your sentiments, as I am in the same boat. Nothing is working and my LLMD is concerned that I may have a detox problem, so I am curious as to others' responses on this.
Thanks for your post.
Lots of luck to you and your son!
This disease is brutal!
~Tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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My son is dealing with somewhat similar issues, plus seizures. He had gotten a somewhat better on abx, but nothing really got him better.
We tried all sorts of detox methods, both oral and IV, but they made him worse at times.
I took him to a functional medicine doc last summer and she suggested checking his methylation pathway. Bingo!
He has a mutated gene in his methylation pathway, which will not allow him to detox. Along with that he is also dealing with a COMT polymorphism, which slows down a lot of vital functions. This is something that a lot of autistic children deal with.
I ended up taking him to a nutrionist in NJ who deals with a lot of autistic children and follows a natural protocol - the Amy Yasko protocol.
She took him off all supplements and started from scratch with buffers, binders and precursors. His anxiety has gone from a constant 7 out of 10, to a pretty constant 1 or 2.
His seizures are much less frequent and much less severe and best of all, he feels like he is really getting better for the first time in 4 1/2 years!
If you are interested in more info, PM me and I will be glad to give it to you.
I will keep you and your son in my prayers, Take Care, Karen
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
would ritchie shoemakers work on detox be helpful?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am really sorry he is struggling. I hope you can find something that helps him.
If all he has taken is doxy and flagyl you might consider treating co-infections to see if there is any improvement. What is his CD-57 test result? That should tell you where he is with the lyme. If it is not too bad, his problems might be caused from something else. My brain has greatly improved since starting babesia treatment.
What other symptoms does he have other than the mental neuro stuff? You say he is not sleeping now but that could be a side effect of the flagyl. There should be other symptoms to help you determine what he is dealing with. How did the disease hit him? What was he complaining of before he lost his ability to talk.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I looked back at your old posts because I remember you - really sad what you are going through.
What strikes me is two things. First there is zero improvement.
Second, all of his treatment has only addressed Lyme.
Over and over people suggest treating bartonella or babesia. You need to advocate for your son and not yield to the doctors that obviously are not on the right track.
In Cure Unknown the author tells the story of "bicycle boy". This little guy was institutionalized because all he did all day was pedal a stationary bicycle. He was otherwise unresponsive. Treating bartonella brought him back to life - back to himself.
Dr. H is in NY. Make an appointment with him. Even if you have to wait 6 months, you need to see the best. In the meantime make sure your son receives treatment for the co-infections, especially bartonella and then babesia.
If you insist, the doctors will listen to you. I cannot tell you how many times I have been right and the doctors have been wrong. You just can't blindly follow their lead.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My son had very similar problems when on tinidazole (similar to flagyl). He took it for 2 weeks and then crashed. Panic attacks, memory problems, not sleeping etc. After discussing with his LLMD,we stopped the tinidazole. She then suspected a detox problem for him. We did the Genova detoxigenomic test and lo and behold he does have a methylation problem. He too, like Dan's mom found, has a methylation problem being COMT++.
You need to be careful about which supplements to give with this genetic methylation problem, as some can make the problem worse.
We changed his supplements, gave lots of fresh mango (supposed to be good detox for COMT problem) and changed his killing meds and he improved tremendously.
I think it would be worth checking out his detox ability with some testing.
If you google COMT and mango methylation, you should get a top hit on a document which discusses all methylation genetic issues. The link is too long to post here.
Posts: 174 | From UK | Registered: Oct 2009
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posted
Rich VanK posted a set of supplements to take for methylation detox pathway blockages (simplified from the Yasko site) over in the ProHealth CFS forum. Several tried it, with mixed results.
I sent for all the supps, and I did feel better for about 2 months, and then the improvement stopped. We discussed it, and figured that I had another bottleneck somewhere. After getting glutithione shots, and feeling worse, I was told I had a blockage in the sulfuric detox pathway, and would need to add 2mg of molybdenum to the glutithione. It worked.
Now, my LLMD has me taking NT factor, and either something he said, or something I read about it makes me think it will help with the methylation detox pathway. It's supposed to help the cells build better walls around the mitrochondria, which will help with energy. I just started on it this week.
Another thing I'm taking that is supposed to do the same as the protocol Rich VanK came up with is the nutrient powder by Teitelbaum called "From Fatigue to Fantastic" which I've been taking for years.
I had a really rough couple of years, until the Babesia and Bart were addressed, and now I'm still fighting Lyme amd Candida overgrowth, but I am in a much better place. I eat gluten free and low carb, and that helps a lot.
Getting good, restoring sleep is so important, I feel a sleep specialist should be involved if the patient isn't waking up rested. It's made all the difference for me, getting the deep sleep needed.
Hope something here is of help.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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