L-Arginine amino acid

[jewels]

Hello all,

 

I really need lots of help with this as there is so much conflicting information.

 

L-Arginine is an essential amino acid in the body, and I believe children produce it naturally for growth. It is also found in foods, dairy and wheat products being two of them. Some articles that I have read suggest it decreases when we get older.

 

High levels of Arginine seem to be capable of promoting the presence of certain viruses in the body., may lower Lysine, increase headaches and cause digestive upset. Lysine keeps herpes viruses dormant.

However arginine is also essential for the immune system.

Am I right in saying that arginine and lysine cross the blood brain barrier?

 

Does anyone have thoughts on the following.

 

1 Do PANDAS children get better as the Arginine levels in the body drop as they get older?

 

2 Is there an improvement DF?GF when arginine food levels are removed?

 

3 Has anyone had any amino acid tests, and what were the results?

 

4 Could Arginine promote the presence of Strep?

 

5 Can abx lower/increase arginine in the body?

 

6. Do our children produce to much or not enough?

 

The reason why I'm so interested in this is because my son suffers with persistant infections in his nose, brought on by allergies. He has his nose swabbed at the ENT clinic and it always comes back Strep/impertigo.

 

On top of this he suffers outbreaks of cold sores. When he has a nose infection, it really irritates him, and he constantly wriggles/rubs his nose and pulls his top lip over his front teeth.

Having one PANDAS child sent me into a panic that I now have two, but the Dr assures us it is not a tic, but him coping with the irritation, but I'm not sure. He is on allergy medication and steriod spray daily which seems to be working well.

 

The reason why I have brought up the subject of Arginine is that as his cold sores can be really bad our natural health dr advised that we give him Lysine rather than taking Aciclovir tablets that are pescribed.

 

I have noticed his nose wriggling, lip pulling stop within days every time I give him Lysine. This result has happened three times now. I do not keep him on the Lysine all the time, only when we have cold sore issues.

 

I have not tried my dd on Lysine as she is well on abx.

 

Could there be a connection here?

 

Thanks for your thoughts and any info.

[MichaelTampa]

jewels,

 

I don't have all the answers to your questions, but do have some experience and information on these amino acids. I recently had a blood test result showing low growth hormones. My MD told me to add cysteine, ornithine, lysine, and arginine to me supplements. Ornithine is almost impossible to buy alone--it often comes with arginine. When I took arginine/ornithine, which my body said it wanted through muscle testing, I felt bad, kind of a buzzy/foggy head. Though muscle testing has been very successful in predicting if an addition will be good or bad for me, it has been touch and go with amino acids. Taurine and tryptophan have both done this same thing of test good and then feel bad after taking (but 5HTP is fine--it is tryptophan already combined with something else in a certain way). Martin Pall's book that I just read, "Explaining Unexplained Illnesses", has explained a lot of various experiences I have had with PTSD, chemical sensitivity, and chronic fatigue symptoms and supplements and other treatments--truly amazing--and I think it has a lot of applicability to PANDAS. The theory of the book is these conditions are basically too much nitric oxide in the body, resulting in a vicious cycle that is just very very difficult to get out of. I wish I could find the mention or two he had of arginine ... did he say it increases nitric oxide, and was bad for that reason? ... or my sense is, it might have been an even more complicated explanation ... I don't know. In any event, I would expect arginine would be a bad supplement for many PANDAS patients, but I certainly wouldn't make an absolute statement.

 

I separately ran into other sources that NAC (n-acetyl cysteine) can be good for chronic conditions and TS/PANDAS conditions. This has been excellent for me, and given its number of recommendations from different theories, I really think it belongs very near the top of the list for supplements recommended for PANDAS.

 

Lysine I take also, and it is not causing me any problems, I'm not sure how much it is helping me (truly not sure, no really poo-poo-ing it), perhaps it is helping some. The lysine I test for to take with a meal, with breakfast and lunch, so you might consider when you are giving it, it is possible that earlier in the day with food is a better way to go (but can't guarantee it, that's just my experience).

 

"1 Do PANDAS children get better as the Arginine levels in the body drop as they get older?"

Interesting question. I had always assumed it was the steroids from puberty. For what it's worth, my arginine at age 42 and still crazy with PANDAS, is 98.5, about in the middle of the very large normal range (28 - 159). And, my lysine level is low, 87.2 from a range of 110 - 290. Ornithine about middle of normal, and cystine at the high end of normal, despite the fact that NAC is so helpful.

 

"2 Is there an improvement DF?GF when arginine food levels are removed?"

I'm guessing you ask this as you mention the wheat and dairy as sources. It could be. However, I'd caution you to consider, for a good number of the amino acids, the body can convert them from one to the other as it sees fit. You might look to see if arginine is that way or not, and what other sources of arginine there is in foods. One thing that was a big surprise in my test was the taurine being high (outside normal range) and cystine being high end of normal. As a vegan, I do not consume anything with taurine (particularly since my body reacts poorly to the supplements). It can convert cystine to taurine, but while cystine is present in a vegan diet, it is supposedly present in smaller amounts, and I have plenty of both...very strange.

 

Michael

[Suzan]

On top of this he suffers outbreaks of cold sores.

 

Just as a side note, my dd's get cold sores a lot too. My dd8 has been tested for herpes viruses and had high titers to hhv6. The doc put her on valtrex antiviral meds and she does not seem to get cold sores any longer. My dd7 is still getting them from time to time but we have not tested her yet for the herpes virus.

 

Your amino acid questions are interesting and thought provoking but I don't have any knowledge about it unfortunately!

 

Susan

[GatsMom]

Hello all,

 

I really need lots of help with this as there is so much conflicting information.

 

L-Arginine is an essential amino acid in the body, and I believe children produce it naturally for growth. It is also found in foods, dairy and wheat products being two of them. Some articles that I have read suggest it decreases when we get older.

 

High levels of Arginine seem to be capable of promoting the presence of certain viruses in the body., may lower Lysine, increase headaches and cause digestive upset. Lysine keeps herpes viruses dormant.

However arginine is also essential for the immune system.

Am I right in saying that arginine and lysine cross the blood brain barrier?

 

Does anyone have thoughts on the following.

 

1 Do PANDAS children get better as the Arginine levels in the body drop as they get older?

 

2 Is there an improvement DF?GF when arginine food levels are removed?

 

3 Has anyone had any amino acid tests, and what were the results?

 

4 Could Arginine promote the presence of Strep?

 

5 Can abx lower/increase arginine in the body?

 

6. Do our children produce to much or not enough?

 

The reason why I'm so interested in this is because my son suffers with persistant infections in his nose, brought on by allergies. He has his nose swabbed at the ENT clinic and it always comes back Strep/impertigo.

 

On top of this he suffers outbreaks of cold sores. When he has a nose infection, it really irritates him, and he constantly wriggles/rubs his nose and pulls his top lip over his front teeth.

Having one PANDAS child sent me into a panic that I now have two, but the Dr assures us it is not a tic, but him coping with the irritation, but I'm not sure. He is on allergy medication and steriod spray daily which seems to be working well.

 

The reason why I have brought up the subject of Arginine is that as his cold sores can be really bad our natural health dr advised that we give him Lysine rather than taking Aciclovir tablets that are pescribed.

 

I have noticed his nose wriggling, lip pulling stop within days every time I give him Lysine. This result has happened three times now. I do not keep him on the Lysine all the time, only when we have cold sore issues.

 

I have not tried my dd on Lysine as she is well on abx.

 

Could there be a connection here?

 

Thanks for your thoughts and any info.

 

 

When we started working with a DAN! 3 yrs ago, he did a trial of a prescription antiviral (similar to Valtrex) on my son. It was disastrous! Within 72 hours of starting it we experienced a huge crash. Now many would call that a healing regression and to stick it out but he was so weak from battling ocd and his inability to eat that I knew he could not tough it out. Later in his recovery, once his gut was in better health (using Rx antifungals to get what our DAN! thought was yeast overgrowth) under control, we tried Olive Leaf Extract for it's antiviral/antibiotic qualities and he did so well, shedding old ocd behaviors quickly. Many kids with an ASD test high on HHV6, which supports the DAN! stance on antivirals. We will surely revisit olive leaf extract when I can get him eating consistently again. I do think antivirals (Rx or natural) are a useful therapy but I also believe the patient should be somewhat stable and even then utilize the old battle cry from the DAN! world...go in low and slow.

[jewels]

Thankyou for your comments,

 

Michael, your amino acid results are very interesting. Could your body be making high levels because it's fighting the PANDAS? I have read lots on nitric oxide also in ASD books.

 

I wonder if people with other autoimmune conditions like MS, have high levels of arginine as adults.

Could these high levels be another indicator for PANDAS?

 

I keep noticing the mention of HSV in the forums here. Its one of those viruses that has a wax and wane effect. That is why I see a pattern with regards to tics. We get tics with viral infections as well as strep. And dd will always get a pinprick strange red rash with viruses. She has suffered with constant viral infections, since catching chicken pox! I am left wondering if the chicken pox could be reactivating when her lyseine levels are low.

 

If we get another outburst of PANDAS, and we don't see a strep infection I'm going to ask for a viral and amino test. I have also read that unknown viruses can trigger autoimmune conditions.

 

We were also advised to use L-cystenine, (dd has decreased pyroglutamic acids),

 

Susan, do you mind me asking if dd has to take Valtrex on a long term basis. Thanks.

[Suzan]

I keep noticing the mention of HSV in the forums here. Its one of those viruses that has a wax and wane effect. That is why I see a pattern with regards to tics. We get tics with viral infections as well as strep. And dd will always get a pinprick strange red rash with viruses. She has suffered with constant viral infections, since catching chicken pox! I am left wondering if the chicken pox could be reactivating when her lyseine levels are low.

 

If we get another outburst of PANDAS, and we don't see a strep infection I'm going to ask for a viral and amino test. I have also read that unknown viruses can trigger autoimmune conditions.

 

We were also advised to use L-cystenine, (dd has decreased pyroglutamic acids),

 

Susan, do you mind me asking if dd has to take Valtrex on a long term basis. Thanks.

 

I'm very interested in hearing any results you have with amino acid testing as my dd8 also gets the red rash you talk about with viruses and ramps up with pandas symptoms even if not strep.

 

Our doc (who is a Dan! doc) put her on Valtrex for 6 months and then I guess we may retest or re-evaluate. We took a 1 month break while trying to get the generic and I can tell a difference in her behavior (for the better) when she is on it. For us, it really helps. It was our ped. neurologist who did the herpes tests. He said neurological issues were very common with those viruses if your body does not process them correctly.

 

Susan

[Fixit]

I would appreciate anyone's response or thoughts on this as well

 

had aminos done

 

Leucine and Lysine are too high, which could indicate Pellegra, he does have a problem with his hands getting all different kinds of cracking, raw,

psoriasysy etc...just a few days ago he said when he was in PE and was wiping the sweat from his head,,,,,each time it made his hands feel like they were being stung by a thousand bees....i told him he needs to tell the teachers anytime something weird happens

 

Could he be over producing lysine because he's trying to fight something??

er

Heads up..when i bought eggs the other day, i bought some that said it had Leucine on the top of the carton.....well i felt terrible after, that would be the corn thing...as mentioned by Caryn...i will try them again to see if i get the same reaction..

 

Arginine was middle lower at the 40 percentile

 

Now his tyrosine was lower and since his Vanilmandelate and Homovanillatw were low it suggests more Tyrosine....these low levels can indicate restless leg syndrome and half of his tics are in his legs....but i'm scared to add it as concerns some have mentioned....it also says low dopamine levels, but on the camk his dopamine was high,,,if it'w measuring the right/same way(or is it like the inversion of the T4 vs TSH

Low tyrosine leads to thryoid problems which is on both side of the family...this would lead to low body temp and he was usually cold...but he last 2 months or so he's running hot and runs around the house in shorts and a tshirt

 

 

I think its also adreanal fitgue as for awhile about a year ago,,,he would kind of tap/push himself in the kidneys sort of

 

His asparagine levels are low which indicate a need for mag...but his mag always comes up fine

 

I guess i get confused because one problem requires one answer...but when i measure that thing that is in the wrong direction as required for the cure to the first problem,,,so do i treat the other thing that is out of wach the other way

 

I hoping dr k will be able to answer some of this

This doesn't answer anything i'm just looking for my own answers

[jewels]

I thought of something else!

 

Steroid bursts help PANDAS children, but steriods also affect their growth if given over a period of time. As arginine is essential and required for growing ghildren, do steriods reduce this amino acid, thus stopping what the arginine could be triggering if there is an inbalance in the body.

 

I wonder if steroids have an impact on herpes viruses, as well as strep.

[MichaelTampa]

I thought of something else!

 

Steroid bursts help PANDAS children, but steriods also affect their growth if given over a period of time. As arginine is essential and required for growing ghildren, do steriods reduce this amino acid, thus stopping what the arginine could be triggering if there is an inbalance in the body.

 

I wonder if steroids have an impact on herpes viruses, as well as strep.

 

 

Very interesting thought there. Perhaps that's part of it, certainly a different theory than the doctors are working on, which is that the steroid burst reduces inflamation (unless it does that by reducing arginine levels). Would love to hear what an MD would have to say about it, maybe will get a chance to ask mine next visit. Complicated stuff.

 

Regarding my high taurine levels despite not consuming any, yes, about the only theory I can come up with is that from my TS or PANDAS issues, my body really wants the taurine to help with the situation, so it is making as much as it can, disregarding whatever the range considered to be normal would be. This is consistent with the fact that a number of people with TS do benefit from taking taurine. For some reason, my body can't handle taking the taurine straight, and I guess that's just another unanswered puzzle.

 

On these boards I do see a bit of this amino acid helps for this person, another person reacts poorly to it, and so on, and it definitely seems like these are all clues if only someone could really figure it out.

 

Fixit--Unfortunately, I have no ideas there to explain what you are seeing, but do encourage you to keep at trying to figure it out, as it probably is a significant clue.

 

Michael

[Fixit]

thanks micheal and my boys taurine is high too

[Kayanne]

Now his tyrosine was lower and since his Vanilmandelate and Homovanillatw were low it suggests more Tyrosine....these low levels can indicate restless leg syndrome and half of his tics are in his legs....but i'm scared to add it as concerns some have mentioned....it also says low dopamine levels, but on the camk his dopamine was high,,,if it'w measuring the right/same way(or is it like the inversion of the T4 vs TSH

Low tyrosine leads to thryoid problems which is on both side of the family...this would lead to low body temp and he was usually cold...but he last 2 months or so he's running hot and runs around the house in shorts and a tshirt

(The bolding is mine)

 

Are you talking about the Cunningham blood test results? You said his dopamine was high? They were not measuring dopamine levels, but were measuring anti-neuronal antibody titers to dopamine 1 and 2 receptors (I think its the receptors)---so if those titers were high, could that mean that dopamine is low? That your son has bad anti-bodies attacking dopamine receptors?

 

Okay...I would double check with someone because I have a very cursory understanding of the cam K test...maybe ask Buster...or email Dr. Cunningham, I believe that other posters have said that she is responsive to questions.

 

~Karen

[Fixit]

Now his tyrosine was lower and since his Vanilmandelate and Homovanillatw were low it suggests more Tyrosine....these low levels can indicate restless leg syndrome and half of his tics are in his legs....but i'm scared to add it as concerns some have mentioned....it also says low dopamine levels, but on the camk his dopamine was high,,,if it'w measuring the right/same way(or is it like the inversion of the T4 vs TSH

Low tyrosine leads to thryoid problems which is on both side of the family...this would lead to low body temp and he was usually cold...but he last 2 months or so he's running hot and runs around the house in shorts and a tshirt

(The bolding is mine)

 

Are you talking about the Cunningham blood test results? You said his dopamine was high? They were not measuring dopamine levels, but were measuring anti-neuronal antibody titers to dopamine 1 and 2 receptors (I think its the receptors)---so if those titers were high, could that mean that dopamine is low? That your son has bad anti-bodies attacking dopamine receptors?

 

Okay...I would double check with someone because I have a very cursory understanding of the cam K test...maybe ask Buster...or email Dr. Cunningham, I believe that other posters have said that she is responsive to questions.

 

~Karen

 

thanks for the reply...I would love for Buster or anyone who might understand to give their ideas...yes it was the cunningham test

Ds thyroid was reading a bit out of range but it wasn't a full work up it was just the t3 and t4....pediatrician said dont' worry about it 2xs

he is not on thyroid meds..i guess we need the full panel done??

 

Michaeltampa......i went to a NIS practitioner very similar to a NAET and the first time he said my boys Dopamine was way low...and i said do you mean high(my thought because of the camk) he said no...low

then i went again last week and he said after checking him...his dopamine is low....he didn't check his notes and asked was low last time too right????..also picked up mercury too.....so i don't know what to think

 

Is there a particular type of doc someone could suggest who would look at his urine, blood, thyroid, hair sample, skin ie an immunologiist....of my sons 52 things, problably 3 thngs are causing it all.....I am seeing no one right now I've been at this almost a year on my own...i just want someone to listen,,,go, ok, maybe and try some things and guide me........look at he body as 1 picture made of different pieces or vise/versa....not 5 different pictures

 

I am hoping DrK will get me where i need to be

[Fixit]

thanks for the reply...I would love for Buster or anyone who might understand to give their ideas...yes it was the cunningham test

Ds thyroid was reading a bit out of range but it wasn't a full work up it was just the t3 and t4....pediatrician said dont' worry about it 2xs

he is not on thyroid meds..i guess we need the full panel done??

 

Michaeltampa......i went to a NIS practitioner very similar to a NAET and the first time he said my boys Dopamine was way low...and i said do you mean high(my thought because of the camk) he said no...low

then i went again last week and he said after checking him...his dopamine is low....he didn't check his notes and asked was low last time too right????..also picked up mercury too.....so i don't know what to think

 

Is there a particular type of doc someone could suggest who would look at his urine, blood, thyroid, hair sample, skin ie an immunologiist....of my sons 52 things, problably 3 thngs are causing it all.....I am seeing no one right now I've been at this almost a year on my own...i just want someone to listen,,,go, ok, maybe and try some things and guide me........look at he body as 1 picture made of different pieces or vise/versa....not 5 different pictures

 

I am hoping DrK will get me where i need to be

 

 

i went to get a tissue and my 2 year old hit the send key....i also wanted to say there are alot of smart people on this board so, please chime in...here's a repeat of info, i don't know if anyone can gleen anything from this camk at 105

Anti-neuronal Antibody Titers

 

Anti-Lysoganglioside 2 hours

patient 160

positive control >1280

negative control 160

normal range 80-320

normal mean 147

 

Anti-Tubulin 2 hours

patient 500

positive control 8000

negative control 250

normal range 250-1000

normal mean 609

 

Anti-Dopamine 1 2 hours

patient 2000

positive control 8000

negative control 1000

normal range 500-2000

normal mean 1056

 

Anti-Dopamine 2 2 hours

patient 8000

positive control 16000

negative control 2000

normal range 2000-16000

normal mean 6000

[jewels]

hello fixit

 

I know that DAN drs help in this area. The Tourettes forum have lots of knowledge on the biomedical testing, that may get you some insight into these results.

 

Let me know how you get on.

[Kayanne]

Fixit,

 

Are you from PA?