2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I found a clinic that is an hour away.
Not sure what to make of it. Part of their practice utilizes neurotransmitter testing with urine, I think.
I know several on Lymenet have tested this way, but I keep reading it's a hoax.
Anyone with experience who has knowledge of this either way, please weigh in.
Thanks As Always,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If for your son, I would not do this. You say he's waiting to see a LLMD ped. in a couple months.
I thought he was already under the care of another but it seems not.
Just wait for the expert. In the meantime there are things to do for support regarding nutrition.
This or that test is just not going to help and, were I him, I'd be getting a bit shy or irritated over urine being examined so often. I would really start to wonder and be very, very worried for my urine to be so examined (as with all the past focus on it).
I think it really can't tell much, anyway, when there's a much bigger picture.
Obviously, there are things that are out of balance. But the primary focus should be from a LLMD - I know I've chased rainbows, thinking if I could just do this, get this, know that . . .
He needs organized and consistent treatment with a LL doctor -- now, while you wait for the LLMD, maybe see a LL ND who can help with good support, but one who is LL, preferably having worked with grade school children, too.
Focusing on cooking, finding the farmers' markets, etc. may be more productive and he's at that age where maybe he'd like to start getting involved in the meal prep.
Would he like to learn a musical instrument? THAT will help with neurotransmitters and also help to calm cortisol.
I'm just thinking that he might better enjoy other paths that will also have a positive impact. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Keebler, I was looking into the "Brain Balance Program" which is parent supported for children with Autism, Tourettes's ADHD.....
I was trying to find someone who could guide me in behavioral techniques and nutrition for Tourette's and ADHD. Neither doctor really fills this role. Not Doc J or Doc K.
So, I called and it is a bit more then I wanted. It does one urine test and a finger prick all for food allergies, which I could use help with, and Neurotransmitter testing. We do it at home and send it off.
Then come the supplements and neurotransmitter homeopathic drugs, which I do not want, nor will my husband approve. Plus, Jake's kidneys and liver are week. So, the doctor is calling me tonight to see if we can work despite that.
They do a 5 hour testing on 11,000 brain centers (something like that), and based on which hemisphere is not electrically synchronised with the other will determine our sensory and motor work with the clinic for three months, three days a week.
I like that. I want someone to use behavioral techniques to help him cope, and maybe help dissipate the tics.
I agree with a musical instrument, preferably the piano.
Nutrition is key, but I could use some help. Some focus. They hand hold the parent, check for food allergies and do diet plans.
I don't know, it's just a thought.
But, I wonder how accurate these neurotransmitter tests are anyway.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When is his appt. with Dr. J?
Can you talk to the office manager there and ask them for the suggestion of one book, one group, one diet plan . . . then you'll at least be prepared for that appointment, so to speak.
Assume it's good to avoid: gluten; dairy (& casein); soy; corn. And, of course, all additives.
Assume vegetables with each meal matter.
Gathering with the group above, taking some hints is nice but I think that testing is just not going to show you what you want to know. Not if lyme is involved. Not if not guided by an expert LL doctor.
Sure, not everything is lyme but lyme affects so much and that's why a LL doctor is best to sort it all out.
Still, there is much of value from most autism groups regarding nutrition, etc.. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I got my results from meta metric from my naturopath. I've done neuroscience before also. I don't know with your situation, but I take supplements based on results.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I used neuro science for years. It's a good test and given your concerns I would say that it would be a good test to do. Few lyme doctors get into that sort of stuff but having lyme will mess with the balance of your neuro transmitters independent of other health concerns issues.
If you decide to have your son tested and you use Neuro Science and they suggest supplements, I can give you a link that sells their supplements at very discounted prices. Best I have seen.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
His appt with Doc J is on 7/2. I want him to eval my son. So, he can see what I see.
He also needs to recheck liver, kidneys, and I was hoping he'd look at the adrenal glands.
I'm doing the best I can with his diet, but it is far from perfect.
Putnam, are you any better? You were so dishelved a few months back with your neurotransmitters. What did they find, what supps are you on, and is it helping?
Thanks too Abxnomore, I would be curious to know the results, but I don't want to treat it or anything for that matter now. But thanks, I'll keep the link in mind to ask you if we go that route.
ugh
[ 04-18-2012, 04:36 PM: Message edited by: 2roads ]
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
His appt with Doc J is on 7/2. I want him to eval Jake. So, he can see what I see.
He also needs to recheck liver, kidneys, and I was hoping he'd look at the adrenal glands.
I'm doing the best I can with his diet, but it is far from perfect.
Putnam, are you any better? You were so dishelved a few months back with your neurotransmitters. What did they find, what supps are you on, and is it helping?
Thanks too Abxnomore, I would be curious to know the results, but I don't want to treat it or anything for that matter now. But thanks, I'll keep the link in mind to ask you if we go that route.
ugh
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 2roads, you may want to delete the name of your son as, with the city and other descriptors, there may be people who could see this who would then figure out who he is.
Well, three months seems like a long way off to Dr. J. but there is still good stuff you can do in the meantime and save money for July.
While washing an apple, it just came to me why it just seems chasing the wrong tree (?) to test for urine neurotransmitters.
Lyme is very toxic, excito-toxic. That creates a rush of excited neurotransmitters (NMDA stuff). Magnesium is the number one thing to calm that down. Fish oil, too.
No urine test is going to be able to show the whole picture or lead to the right balance without also considering lyme.
Are there other autism doctors, maybe some LL NDs, say, who are also LL? The Lyme Induced Autism site may have some connections for you, and parents' groups, too.
Absolutely, the food part is a great place to start. I just hate to see you use energy for stuff that I chased and chased to no avail for myself with doctors that did not have the full education.
In my case, the neurotransmitter testing - and the supplements that came from that were a waste of time. They also made me feel worse, with more seizures. They got it all wrong because they did not account for a neuro-toxic infection.
Can you talk to Dr. J's office to see what they might suggest you do in this waiting period?
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Neurotransmitter imbalances are secondary to Lyme. Magnesium alone nor fish oils will not address the imbalances. I disagree with your assessment, Keebler, having used this lab for years. I'm not saying not to continue to pursue a lyme dx. but this is an adjunct therapy that will only support the body if one has a lyme dx.
Neuroscience tests for all of the major neurotransmitters and has targeted formulas that are specific to rebalancing them. They are mostly targeted amino acids the building blocks of neuro transmitters.
The test is non invasive and they will give you a complete report of your levels and a very complete picture of what is taking place. There is no harm in taking the test as it's non evasive but there can be a lot to learn about one's situation and even if the imbalances are caused only by Lyme, which is a big deal, having neuro transmitter support while battling lyme will only help in the long run and hopefully help toward preventing any permanent damage. They also have a test that includes adrenal testing.
The best thing would be to speak to the lab. They are very helpful and they can advise on the best panel to run and which panel tests for both neurotransmitter and adrenal function.
Scroll down and you will see an example of just some of the neurotransmitters they test for.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
It was our last LLMD, who works with children, who recommended the neurotransmitter test (urine) for my daughter, who had been on magnesium, fish oils, and trials of 5-HTP (bad results for us with her, 5-HTP) for years.
The LLMD actually made a special call to me, he was concerned/surprised at her results.
We then tried the natural supplements recommended from the testing, manufactured by neuroscience, expensive, with no results, or a worsening.
That is when we had to go to pharmaceutical route. And we only went that route because TRULY we were in major trouble, hurts to go into the details, but trust me. She is also starting some behavioral therapy next week.
JMO! BUT, I really think children (maybe just the gestational infected ones) are perhaps more affected or present with more layers- and many have some real psychriatic disorders.
We also went through a year of PANDAS treatment before we found Lyme and Bartonella.
Tourette's can and is in many children infection related.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
I have been having a lot of neuro issues to the point that I have palpitations every time my bladder is full.
I had the urine neurotransmitter test just to explore what's going on and sure enough my neuronephrine was high and the doc thinks this could be the reason for the nerve excitation.
Of course Lyme or Candida and other infections can make this happen. I was told to take Taurine and work on liver detox along with other things for the infection. But since it's infection related I think we have to focus on getting the infection out and the neurotrasmitters should come back in line after that, of course theoretically.
Posts: 247 | From Ca | Registered: Feb 2007
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hi everyone. Thanks for your input.
The doctor called me the other night and he said he doesn't do neurotransmiiter testing. So, the receptionist was not correct.
I know he checks for food allergies. I don't really know what else he checks for, except that I would like a parent meeting with him to see if any of this could be applied to my son.
My husband does not really want to do this. He says wait until summer, then he says let the boy have a summer.......on and on.
I guess if and when it gets worse, that will be the time for him.
To me it seems worse.
I have been doing breathing exercises with him at night for 5 minutes starting. He needs to get accustomed to it though. Then he goes to bed.
His mind is still so busy. He's still so nervous and fidgety. Also, talks weird sometimes and has Tourett's behavior. I am curious about the Magnesium. Keebler brought that up before and I took some pill which then I converted to baths. But, Magnesium can be hard on the kidneys, and they are struggling right now.
There's a body and a brain component that needs to be assessed. Kidnys/liver/adrenals need testing. Then we have the brain.
ugh
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hi everyone. Thanks for your input.
The doctor called me the other night and he said he doesn't do neurotransmiiter testing. So, the receptionist was not correct.
I know he checks for food allergies. I don't really know what else he checks for, except that I would like a parent meeting with him to see if any of this could be applied to my son.
My husband does not really want to do this. He says wait until summer, then he says let the boy have a summer.......on and on.
I guess if and when it gets worse, that will be the time for him.
To me it seems worse.
I have been doing breathing exercises with him at night for 5 minutes starting. He needs to get accustomed to it though. Then he goes to bed.
His mind is still so busy. He's still so nervous and fidgety. Also, talks weird sometimes and has Tourett's behavior. I am curious about the Magnesium. Keebler brought that up before and I took some pill which then I converted to baths. But, Magnesium can be hard on the kidneys, and they are struggling right now.
There's a body and a brain component that needs to be assessed. Kidnys/liver/adrenals need testing. Then we have the brain.
ugh
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say his kidneys/adrenals/liver all need testing. Unless there are other diagnoses going on, all those systems are just going to be stressed during lyme.
Most often, the best we can do is just SUPPORT with excellent nutrition, staring with food.
Of course, follow his doctor's advice on this if there is a problem.
If magnesium is deficient, it's needed. Yes, from the outside in helps but - as long as the kidneys are working if magnesium is in DIVIDED DOSES 3 x day, that should be fine. The key is not all at once as that can be hard on anyone's kidneys.
The right amount, right type, can HELP the liver and the kidneys. Magnesium is needed for the liver to work better. When the liver does not, the kidney then also become stressed.
Also search: Foods high in magnesium.
-----------------------------
Were it to be me, until the LLMD appt., I might do best just focusing on the basics: food; movement; other interests that will bring some joy. These all matter tremendously and won't seem so much like work as exploration.
Not sure where he stands regarding additives (e3specially if he consumes a school lunch) but that might be one thing to address if not already.
Is his school food free of additives? If not, you might ask why and garner parent support - you don't have to chair a committee but you might have to find others to step up to the plate.
I'd start with the autism groups in your school district.
OR - he could eat just want he takes from home.
And he may see prompt improvements by clearing all additives. He might also find some fun in being the detective on this as they sure can hide.
Maybe his friends would like to all get involved - even take cooking classes over the summer. I was cooking a few things by the time I finished 3rd grade. At that time, I thought it was fun.
If his kidneys are struggling, avoid all additives is even more important. Even "natural flavors" can be hard on the body in many ways. And they can "wire" a sensitive person, too.
GLUTEN-FREE; etc. ? Again, look to the Lyme Induced Autism community for suggestions.
As you wait for the July LLMD appt. you might get other support advice from an experienced ND, or similar. They are well trained in nutrition.
Even if you focus just on a food plan, it can help prepare him for the LLMD appt.
And there may be a few key supplements that LL ND would suggest for this waiting period.
They can help with a FOOD PLAN; teach you ACUPRESSURE that you can do at home for him; Breathing exercises and other movements that might be better than some other behavior therapies.
Learning breathing exercises can change so much about how the body can help to calm itself.
There may be a yoga class nearby for kids, too. Some schools are using it to help the kids be able to settle down to focus. It would not be just any yoga class, however.
Integrative / Holistic M.D., etc. (but be aware many in this category are not formally educated in herbal medicine other than a weekend lecture here and there)
For this kind of medicine, I think it's best to consult with an ILADS-educated LL doctor who has had 4 years of post-graduate medical education in the field of herbal and nutritional medicine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up to your last post, you said:
re: magnesium -- that you "took some pill which then I converted to baths." (end quote)
I'm not sure if you put magnesium pills in the bath water but, if so, not all types of magnesium can be used this way. Epsom salts are best for the bath.
There are topical magnesium "oils" (not really oil but that is what it's called). GiGi and Marnie have had threads about that.
I think so much can be gained right from good food.
Many good links from a search for: FOODS HIGH IN MAGNESIUM
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic