very high serum Ammonia, (normal BUN). possible causes?

[wisdom_seeker]

Hi all,

 

The good news is that I've finally gotten DS 16 to do blood work. The chemistry and basic IgX results are now released, but annoyingly while his MD is out, so I can't ask about the item(s) that concern me.

 

Here are the key abnormal items so far. I'm especially puzzled about the Ammonia.

 

Ammonia 94 (11-32 umol/L) H

 

IgA 42 (68- 259 mg/dL) L

IgG 851 (522-1703 mg/dL)

IgM 53 (28- 179 mg/dL)

 

The IgA can explain why he comes down with any and all colds, though it's not super low.

 

However....

 

WTF is with the Ammonia!?

 

I know how much Ammonia burns, so at almost 3x max normal, I am concerned. Here's where I wish I was an MD/RN. Now I read how neurotoxic it is -- could cause a lot of the behavioral symptoms we associate with PANS -- and that it should be turned into urea in the liver. He's certainly on enough meds that there can be interactions w liver, kidneys. (but BUN, creatinine are just fine).

 

Anyone experienced this? What is the differential diagnosis? Could it be a false positive, because of a meal he ate, or his stress, or how the sample was handled?

 

Here's the basics I've found so far:

Ammonia is produced from the deamination of amino acids in the muscle and the kidneys, and by the action of bacteria in the colon and small intestine. Ammonia is neurotoxic and is detoxified in the body by conversion to urea via the urea cycle in the liver, thus maintaining a low concentration of ammonia in the circulation. It can also be incorporated into glutamate to form glutamine, an important metabolic fuel for some tissues, and a source of amino groups in purines and pyrimidines.

Edited January 24, 2016 by wisdom_seeker

[wisdom_seeker]

Wow!! I just came across a recent post from @LLM mentioning that she is prone to high sulphur / ammonia because of a mutation in her CBS gene, part of the transsulfuration pathway.

 

He does not have any mutations in CBS (according to 23andme, as interpreted by LiveWello). DS does have many mutations in other methylation-related genes, but I don't know which of those are relevant to ammonia production / metabolism. He is taking anti-inflammatory supplements, including turmeric and ginger, as well as a passel of meds to try to manage the symptoms, and underlying allergies (mirtazapine, trazodone, meloxicam, gabapentin, propranolol, fexofenadine) No NAC, though I've considered it as a mucolytic.

 

I am hoping that @llm or someone else could comment whether any of these methylation genes w/ mutations DS has are also part of the same pathway.

 

Homozygous:

ACE

BHMT-02, -04

COMT H62H

COMT V158M

MAOB

MTHFD1L (rs6922269, rs 803422)

MTRR A664A

TCN2

 

Heterozygous:

AGT

FUT2

GAD1 (heterozygous in 9/11 SNPs reported)

NOS2

NOS3

SOD3

VDR Bsm

 

It's a lot, isn't it?

 

Unfortunately, so far it's mostly an alphabet soup to me; I used to be reasonably smart, and (over 30 years ago) had absolutely loved intro biology, but I just can't wrap my head around the methylation pathways.

 

In the last week I've printed out a couple of diagrams of the methylation pathways, but they don't show most of these genes. Even more importantly, I am fuzzy on what the purpose of various products of the pathways are, and what they're for, and w/o that it's hard to build a meaningful mental model. Perhaps if I could find a good Youtube video, rather than a wall of text?

Edited January 24, 2016 by wisdom_seeker

[sf_mom]

Could also be an indication of the following. Perhaps a comprehensive stool would help determine yeast and bad bacteria. However, parasites are often hard to pick up in the comprehensive.

 

"However, parasites, bad bacteria, and candida yeast overgrowth in the intestinal tract, can produce more ammonia than the body is equipped to deal with, leading to a compromised immune system".

 

Has he been worse the last couple of days? Today is the full moon and parasites replicate during the cycle so often 3 days prior to full moon and after there might be an increase in symptoms.

 

http://nutristart.com/ammonia-toxicity-part-2/

[LNN]

I don't know that this is an unusually high number of mutations. I've seen more than this for a number of kids and even I have more than this. Your son does have a few that will make heart disease a potential problem (ACE, NOS & SOD), especially since high ammonia is an issue.

 

But the good news is I don't see a ton of mutations on the genes that have bigger impact on mood - other than COMT. His MTHFR, CBS and VDR Taq are normal, and these are biggies for mood. COMT is the warrior/worrier gene and being homozygous, along with +/+ for MAO-B, means he will stay ramped up on epinephrine and dopamine longer that others around him - making him more prone to anxiety and anger. But MAO-B has lesser impact than MAO-A. It looks like he's more likely an over-methylator rather than an undermethylator, so you might see benefit from adding Vitamin B3 to soak up some extra methyl donors. B3 comes in several forms. If you use niacin, you'll periodically see a "niacin flush" - a hot flash where the capillaries dialate rapidly. It's harmless but uncomfortable for about 20 min. The flush also releases histamine, causing an itchiness. Niacinamide is a form that won't cause a flush, so it's the form I'd recommend. My son is an over-methylator and niacin makes him much more even tempered (he takes 100mg niacinamide in addition to what's in his B Complex vitamin).

 

I believe SOD plays a role in sulfur and ammonia, but you'll need to double check me. It's been awhile since I've looked at this. Also look into GAD and FUT, as I recall some link with gut health.

 

In terms of high ammonia, I can't speculate on what's causing it to be high. But a supplement that can help is l-ornithine, an amino acid. There are three amino acids involved in the urea cycle - arginine, ornithine and citrulline. All three recycle into each other but ornithine is the rate-limiting factor in the cycle. Ornithine uses ammonia to do it's thing, so adding ornithine helps the body soak up more ammonia. It's used in ERs for cases of hyperammonium. You can buy l-ornithine alone or in combo with one or both of the other two aminos listed above. It's a popular supplement in body building because breaking down muscle increases ammonia. We used a combo supplement that had 250mg of ornithine. We started with 3x/day because my daughter had an adverse reaction to cipro and she stopped peeing. She was so weak and toxic. But once she started feeling better, we tapered down to once a day until she no longer needed it.

 

Yucca root is also great for reducing ammonia, but it's slightly estrogenic, so it shouldn't be taken for more than 3 months at a time. Hibiscus Sabdarifa (aka Roselle) is also a good herb for reducing ammonia and lowering blood pressure. You can find research on all three (ornithine, yucca, roselle) on Pubmed. Here are some links on general methylation issues

 

http://autismnti.com/images/Website-_Yasko_Education.pdf

 

You can go to Youtube and search for videos by Amy Yasko, Kendall Stewart and ? Rawlins (can't recall his first name).

Edited January 24, 2016 by llm

[LNN]

Seeking - I just saw one of your posts on MARCONS where you say your son is allergic to sulfa drugs. If so, even tho his CBS gene is normal, there may be other genes that are making it hard for him to neutralize sulfurs and ammonia by-products. You're giving him tumeric - which is high sulfur. You may want to review his meds and supplements to make sure you're not adding to his ammonia/sulfur burden.

[cobbiemommy]

If you do not have a follow up appointment with your child's physician, get one ASAP. Generally, high ammonia levels result from the liver's inability to metabolize and excrete the ammonia into a waste product. My mother contracted Hepatitis C from a blood transfusion in the 70's and the ammonia in her blood from having a diseased liver was one of the worst side effects.

 

Do not be afraid to follow up with a hepatologist. They specialize in disorders of the liver.

[wisdom_seeker]

DS's doctor is great -- and he was also puzzled, but not concerned, because DS's liver enzymes are all fine.

 

Yesterday I discovered that it's relatively easy to have false positives on the Ammonia test, because the ammonia levels rise rapidly if whole blood is not immediately iced and processed w/in 15-30 minutes.

 

So DS has another ammonia test on order, and I will confirm with the lab how they're going to process it.

[wisdom_seeker]

Parasites reproduce around the full moon? Can someone get me a scientific citation for that? I found references that plankton, and reef fish have a lunar-phase dependent spawning cycle, but nothing about parasites of any sort.

 

I'm typically pretty good at finding things, so I searched within PubMed by terms such as

 

Parasite & Moon -- got lots of things written by a Moon :-)

Parasite & "Lunar cycle"

Parasite reproduction cycle

parasite reproduction light

 

but got nothing.

 

There are a half dozen websites that assert that parasites are most active, reproduce or are most susceptible around the full moon, but no references to any scientific observations in veterinary or human parasites.

[wisdom_seeker]

@llm, as usual, an informative, helpful response.

 

Thanks! that gave me some structure, and focus, including a valuable item: your description of some genes relevant to DS that interact.

 

I am glad you don't think it's an unusually large number of mutations -- I don't know enough yet. Simply on LiveWello I saw that the two categories in which he had the largest proportion of mutations were IgA and methylation. And I already know that IgA is an issue, and this had a lot more homogeneous mutations.

 

Yes, DS is definitely a warrior/worrier, and takes a lot longer to come down than DH or my other son, so I'll definitely look at MAO-B and COMT.

 

I'll post again once we have the results of his next ammonia test. In the meanwhile I am guessing it was a false positive, so I don't want to make changes to his diet/supplements till then, since if it was a false positive, I don't want to conclude erroneously "oh, it's better: he needs to continue with this or that supplement".

 

And, lastly, I love the style of the Neurological Research Institute's educational handout on methylation. It is likely to be much easier to grasp and remember!

 

I only wish that it differentiated between statements based on Yakso's theory and those elements that are well-established in medicine. So that, for things that aren't well-established, that if they seem relevant to DS's situation, that I'd try to find reputable sources to substantiate those. Related to that, so that I wouldn't unknowingly claim something, or request something, of an MD that would reduce my credibility... w/o being ready to support the item with good quality evidence. I do think Yasko does some interesting work -- but she does recommend so many supplements, and makes money off the tests and the many supplements she sells, so I want to be cautious.

 

Still, I will look up Yasko's and the other videos you recommended, and read that handout. I do want to be able to wrap my head around methylation.

[sf_mom]

In a little bit of a hurry this morning and I don't know of any specific scientific study regarding parasites replicating during full moon cycle. However, it is nomenclature amongst our treating Dr.'s that pulsed therapies are established around full-moon cycles especially when treating for parasites.

 

A little bit of our history: Our entire family is dealing with Lyme et al and have been treated for the last 6 years. All three of our children have gestational Lyme, are immune compromise inclusive of IgA deficiencies. Our twins who are now 8 years old are recovered from psychiatric symptoms/spectrum issues (did not have a sudden on-set) and 1 child who is now 11 years old and recovered from PANS (sudden on set at age 5). All our children were very reactive to full moon cycles on a regular basis and very responsive to anti-parasitic therapies. However, we also had a positive comprehensive stool analysis's for parasites, blood in stool and images of worms that were released from various family members when treated. We are also in the Bay Area.

 

You might try searching parasites and/or full moon cycles in Better Health Guys website. He is extremely knowledgeable and has very dense information from many of Dr.'s that regularly treat for parasites.

 

http://www.betterhealthguy.com

 

Here is another good resource on parasites.

 

http://www.parasitetesting.com/parasites.cfm

[jan251]

sf mom, could you comment on what anti-parasite therapies worked the best for your family? As in, what would be your top choice if you had to pick one?

 

I have a PANS kid with lyme&co/myco/strep with known immune deficiencies as well as methylation issues (mthfr, etc.) who has never responded to any antibiotics (lengthy, many many types) with any significant OCD reduction and so now we're waiting to add IVIg. However, he is always worse around the full moon - we are still recovering from last weekend! Typically he'll have dilated pupils though I'll already know it's a full moon by the increased level of OCD. It can be confusing that he often gets sick (like a fresh cold) around the same time, so his exacerbations might just be from that. I have long had parasites in the back of my mind.

[sf_mom]

2 of our children receive IVIG every three weeks for immune deficiencies (not HD IVIG). We have seen good progress but it took about year. Their IgG Subclass 1s and IgAs are still deficient but slowly moving in the right direction. I am hopeful that your child will experience similar.... slow and steady improvement.

 

Our third child, we are using EnteragamGam, IgG 2000 and pulsed antibiotic therapies to turn around his immune system. He too is making slow and steady progress in his IgG subclasses.

 

It is hard to determine parasites but we often had one or two children sick during full moon every month. Babesia and Bartonella are 'technically' classified as parasites and it can be confusing to weed out those infections from other parasites if you have Lyme. A few other indications of parasites: dark circles under eyes, random night waking/nightmares during full moon, nail biting, low intestinal absorption (low Butyrate), heavy metals.

 

Treatment: One of our best responses has been with SCRAM by Health Force. Health Force uses the same ingredients all in one pill that Hulda Clark recommends you take individually. We worked up from 1 SCRAM pill a day to 8 pills and added Oil of Oregano.

 

http://www.drclark.net/cleanses/beginners/herbal-parasite-cleanse/parasite-chart-for-adults

 

Other recommendations: Tape worms, rope worms.... worms in general are really, really, really hard to reach. Hence "coffee enemas, MMS enemas, rectal ozone insufflation, ozone therapy". Ozone is great for Babesia and parasites but not so great for Bartonella. Our parasite issues are rope worms and Kerri Rivera discusses the prevalence of them in some of her videos on Autism.

 

Pharmaceutical recommendations: Alinia, Ivermectin (works well for Bartonella too). There are others.

Edited January 26, 2016 by sf_mom

[wisdom_seeker]

Finally have repeat Ammonia results, and they are completely normal!!

 

So this was likely a false positive due to inadequately rapid chilling / delayed processing of the blood sample.

 

This is a reminder to myself and everyone that the more tests that are run, the more likely that at least one one will be a false positive (false abnormal) or false negative (false normal).

 

Despite that knowledge, until I find what chronic infections are driving DS16's PANS, I want to leave no stone unturned. (But even that isn't clear .... I am about to create another post w/ questions regarding his infection tests' IgM/IgG results).