Had Autonomic Nervous System Test, Results Inside

[DadOf2]

Just had this done a little over a week or so ago. The Orange shows my Sympathetic Activity and the Blue shows my Parasympathetic activity. I'm referring to the graph on the bottom right. As you can see, I'm in Sympathetic Overdrive. This is what I've been trying to tell so many Dr.'s for so long.

Well now that this is established, the Dr. that did this test on me is trying to get my situated with Vitamins, Amino Acids, etc.

He says I am undermethylated with high levels of Histamine which is why Benadryl helps me. It will take time, but this Dr. specializes in restoring Autonomic Balance.

We are starting with B12 and Folate in high doses which I am having trouble taking as they make my anxiety go nuts, but my levels were low and until they get to normal range, I'm told this is what I have to go through.

Just thought I'd share this with everyone.

BTW, this was taken with 80mg extended release Propanolol on board. The Dr. said we probably wouldn't have seen much blue had I not had the medication in me.

Dustin

[MamaTrain]

Very interesting! I had a heart rate variability test done and it's cool to see how your systems are working (or not working)! I think the B vitamins is a good idea but can relate to having your anxiety go crazy. I just recently started them and I am going very slowly. Keep your chin up and keep focusing on getting well!

KC

[Maxine]

Wow--------------that's a lot of sympathetic activity. I'll bet your feeling like climbing out of your own skin on some days.

It looks like you have a good plan, and hopefully things will be better soon.

Very interesting graph.

I'll keep you in my thoughts and prayers for a speedy remission.

Maxine :0)

[juliegee]

Cool to see the sympathetic nervous system in overdrive. Out of curiosity, WHO is this doctor? What is his title? How does high histamines play into this? I'm DXed with MCAD & told it's the cause of my autonomic dysfunction. I take the equivalent of mega-bendryl daily . How does this doc connect those dots? I'd love to read HIS research.

I'm glad you're getting answers. Thanks for sharing.

Julie

[bren22]

Just had this done a little over a week or so ago. The Orange shows my Sympathetic Activity and the Blue shows my Parasympathetic activity. I'm referring to the graph on the bottom right. As you can see, I'm in Sympathetic Overdrive. This is what I've been trying to tell so many Dr.'s for so long.

Well now that this is established, the Dr. that did this test on me is trying to get my situated with Vitamins, Amino Acids, etc.

He says I am undermethylated with high levels of Histamine which is why Benadryl helps me. It will take time, but this Dr. specializes in restoring Autonomic Balance.

We are starting with B12 and Folate in high doses which I am having trouble taking as they make my anxiety go nuts, but my levels were low and until they get to normal range, I'm told this is what I have to go through.

Just thought I'd share this with everyone.

BTW, this was taken with 80mg extended release Propanolol on board. The Dr. said we probably wouldn't have seen much blue had I not had the medication in me.

Dustin

Hi Dustin

Can you tell me what kind of testing you had done? So far, all the testing that is done in Canada (at least as far as I know) is the tilt table. This has not given me very much information regarding treatment etc so I am looking for any alternative routes/tests that can give my doctors direction.

Thanks

Bren

[tinkerbella]

Wow, and hello there!

this all very interesting. i'd like to hear more about it also. i'm being worked up for Mast cell right now nd in the process of a 24 hr urine for Histamine.

good luck to you.

bellamia~

[babettess]

Hi Dustin,

Wow! I've never seen such a workup. It looks like it gives valuable information. Thanks for sharing your results.

While I haven't seen my test results in a format like yours, I was told that my sympathetic system and my parasympathetic were in a battle for control.

I am very interested in what kind of doctor you saw and how he determined that you are undermethylated with high levels of Histamine. I have been researching this very thing!!! I have very high levels of histamine in my 24 hour urine and Benadryl is one of the only drugs that makes me feel better. How did your doctor determine that you have a high level of histamine? Did he use a test to determine that you are undermethlated?? My doctor originally thought perhaps I had MCAD, but my urine methyhistamine is normal. Just my histamine is too high and on two different tests.

Glad you have some answers and hope you feel better soon.

Babette

[tinkerbella]

Dustin,

I was really interested in hearing more details when you are up to it. I had to cut my last post short as my homemaker had just walked in. Now I have the WORST mirgraine ever but wanted to see if there were ant updates.

I do hope you will be feeling better soon and I'm going to say a prayer for you right now as I know that terrible feeling of anxiety before I started B12 monthly injections and b complex daily. Also the tiny dose of clonidine 1/2 pill am and pm finally took away that terrible feeling. No one should ever have to live life that way. HANG IN THERE!!! You have a lot to teach us.

Bellamia~

[juliegee]

I second sweet Bella's good wishes for you, Dustin. I'm also low in B-12 and folate. Why so many of us? Anybody know?

Julie

[Tammy]

It is so cool to see someone having had the ANSAR testing done. I've read enough on it and really think that is exactly what we all need to have done, but to find a doctor that will have a respresentative from their company come in and do the testing, is impossible.

[Notgivinup]

Dustin, Dustin, how very informative that test looks, could you pleeeeze tell us who your doc. is. Or what kind of doctor he is.

Hope you're feeling ok.

[ramakentesh]

Those results are typical of a patient with POTS - more likely a hyperadrenergic presentation.

As for the undermethylated stuff I hope you realise that that is a fringe area without much in the way of science behind it - the methylation / undermethylation pathway stuff is the realm of chronic fatigue and comes down to being overly toxic.

How this translates into hypersympathetic activity and or parasympathetic withdrawal is conjectural at best.

Still conventional medicine hasnt been huge on giving us answers thus far so see where it takes you - cant hurt.

[DadOf2]

Hello everyone,

Sorry so long to respond. I have been feeling terrible since I posted the Ansar testing.

I had to start out very low on the B12 and Folate as it was making my anxiety go nuts. I am happy to say that I am now up to 28,00mg or 28000mcg of B12 daily and I guess I'm making my way to Methylation.

I also was put on Methionine recently to help the process.

This Dr. did alot of testing of my blood and it turns out, I'm testing positive for Lyme disease. Specifically Babesia Duncani and Bartonella. The Lyme itself doesn't test positive, but my Dr. is sure I have it given my all of my Neuro symptoms.

I started on some antibiotics and having bad reactions to them.

The Dr. says that I'm still not fully Methylated and thats why my body is having trouble detoxing from the die off. He says I'm full of toxins.

I am however now able to get out of the house a bit. Most of what I feel is in my head (like I'm on a boat bopping up and down while still, headaches galore, head pain all over my scalp, crying jags, tremors, etc.)

My heart rate is stabilizing a bit here and there. It dropped to 44 the other night while going to bed, not sure what that was about, but I can stand and have it around 100 now. This is while on the Propanolol I've been on for months now. He will switch me to Acebutolol, which is central acting, where the Propanolol is not.

Low dose naltrexone is next on the list to get my endorphins going, which is supposed to boost up my immune system.

This guy really seems to know his stuff.

Unfortunately, I can't post his name on here. He doesn't want the publicity, but I am happy to share the plan with you guys.

Right now, I'm taking tons of Vitamins and Amino acids. Here is the list:

Methyl B12

Folate

L-taurine

Activated Quercetin

l-methionine

N-acetyl cysteine

tumeric extract

b complex

b-6

p-5-p

sarsaparilla root

probiotic

magnesium

co q10

mega dose vit.

calcium

More to be added on my next visit on 2/11. Will keep you all updated. This Dr. thinks everyone with Dysautonomia has an underlying infection whether it be Lyme, Mold, Heavy metals, etc.

He has a 3 mos. wait for new patients and takes insurance (Amazing). Again, I'm happy to share the treatment plan with all of you.

Dustin

[tinkerbella]

Hello everyone,

Sorry so long to respond. I have been feeling terrible since I posted the Ansar testing.

I had to start out very low on the B12 and Folate as it was making my anxiety go nuts. I am happy to say that I am now up to 28,00mg or 28000mcg of B12 daily and I guess I'm making my way to Methylation.

I also was put on Methionine recently to help the process.

This Dr. did alot of testing of my blood and it turns out, I'm testing positive for Lyme disease. Specifically Babesia Duncani and Bartonella. The Lyme itself doesn't test positive, but my Dr. is sure I have it given my all of my Neuro symptoms.

I started on some antibiotics and having bad reactions to them.

The Dr. says that I'm still not fully Methylated and thats why my body is having trouble detoxing from the die off. He says I'm full of toxins.

I am however now able to get out of the house a bit. Most of what I feel is in my head (like I'm on a boat bopping up and down while still, headaches galore, head pain all over my scalp, crying jags, tremors, etc.)

My heart rate is stabilizing a bit here and there. It dropped to 44 the other night while going to bed, not sure what that was about, but I can stand and have it around 100 now. This is while on the Propanolol I've been on for months now. He will switch me to Acebutolol, which is central acting, where the Propanolol is not.

Low dose naltrexone is next on the list to get my endorphins going, which is supposed to boost up my immune system.

This guy really seems to know his stuff.

Unfortunately, I can't post his name on here. He doesn't want the publicity, but I am happy to share the plan with you guys.

Right now, I'm taking tons of Vitamins and Amino acids. Here is the list:

Methyl B12

Folate

L-taurine

Activated Quercetin

l-methionine

N-acetyl cysteine

tumeric extract

b complex

b-6

p-5-p

sarsaparilla root

probiotic

magnesium

co q10

mega dose vit.

calcium

More to be added on my next visit on 2/11. Will keep you all updated. This Dr. thinks everyone with Dysautonomia has an underlying infection whether it be Lyme, Mold, Heavy metals, etc.

He has a 3 mos. wait for new patients and takes insurance (Amazing). Again, I'm happy to share the treatment plan with all of you.

Dustin

Good Luck Dustin! My doctor has treated me for Lyme before and nothing happened. She thought I had it again recently and tests came back negitive. Neuro said must keep all infections under control at all times to keep your pots under control. Keep us updated. Thanks for sharing and will be waiting to hearing more.

Bellamia~

[iheartcats]

Interesting about the Lyme, Mold, Heavy Metal, etc. connection. We have another thread going on about mold. One never knows.

Thanks for posting your plan.

Are you in the States? Just curious because Lyme disease is so controversial. My doctor and I talked about it. I had a test for Lyme, but it was negative. I am certain some people have Lyme disease (and I'm glad you have found this out!). I'm glad I finally found a doctor willing to get me tested. It's harder than it should be sometimes!

Interesting work up. I've never seen anything like it! I'd love to know what my activity is!

[futurehope]

Dadof2,

Thanks for your update. Since your doctor does not want the publicity, how did YOU find out about him/her? TIA

P.S. I contacted the company and they will have a representative call me back with the names of the doctors in my area who have the device.

P.P.S. I spoke to a representative in my area and got the names of two physicians who perform the test. She also said that since I am in Baltimore, they would come to to my neurologist's office and perform the test if he so desired. They would do this since they are based in Philadelphia.

The cost is covered by insurance, but did not sound too high (in the $100's). When I asked her why it was two internal med doctors who had this equipment in Baltimore (since internal med docs know less about the ANS than my neuro who is very knowledgeable), she had no good answer. I then also said, what do the doctors DO with this information? My neuro has worked as much as he can trying different things, so I could not understand how they would know what do do? No good answer.

My opinion: This test does give valid info as to the workings of your ANS, or the malfunctioning thereof. It seems less expensive than a tilt table test. As to what to do with the results?????....................I don't think there are any easy answers and that is why the doctor of the OP does not want to advertise. I believe he is doing his best but cannot state emphatically that he "knows what to do", so he prefers to stay mum for now. This is my opinion only, and I may be way off base. But I know for a fact that my neuro is very knowledgeable and if he knew what to do, he would do it.

[DadOf2]

This Dr. gets results that I'm using. He showed me before and after ANSAR tests on many patients he has treated.

It shows graphs similar to mine and then after 6 mos. or longer of treatment, the ANS returns to normal.

In simple terms, Autonomic Nervous System restored to baseline prior to onset of illness.

These patients all had infections, but regardless, it was the result of toxins that the body couldn't eliminate causing the ANS disorders.

By building back up the immune system, the body is able to rid these toxins on it's own, and in many cases, medications are used as adjunctive therapy when the offending underlying disorder is known.

Hope that helps some of you,

Dustin

P.S. I added in the l-methionine just yesterday and today I am feeling lots better. This may have been one of the missing components in my treatment. L-methionine is needed to complete the methylation process. I just hope it stays. I was able to leave the house today and run errands without any problem and my heart rate stayed below 100 while up and about. hmmmmmmmmmmmm !!!

[lauralulu]

This Dr. gets results that I'm using. He showed me before and after ANSAR tests on many patients he has treated.

It shows graphs similar to mine and then after 6 mos. or longer of treatment, the ANS returns to normal.

In simple terms, Autonomic Nervous System restored to baseline prior to onset of illness.

These patients all had infections, but regardless, it was the result of toxins that the body couldn't eliminate causing the ANS disorders.

By building back up the immune system, the body is able to rid these toxins on it's own, and in many cases, medications are used as adjunctive therapy when the offending underlying disorder is known.

Hope that helps some of you,

Dustin

P.S. I added in the l-methionine just yesterday and today I am feeling lots better. This may have been one of the missing components in my treatment. L-methionine is needed to complete the methylation process. I just hope it stays. I was able to leave the house today and run errands without any problem and my heart rate stayed below 100 while up and about. hmmmmmmmmmmmm !!!

Wow, that's amazing. Good luck and I hope it continues!

[lieze]

Wow this is amazing.

I wonder if there is a way to try to help this process along naturally?

I went to Cleveland Clinic and one of the only tests they ran on me that came back that was abnormal was my amino acid gap. It was like half of what it was supposed to be.

I try to take a multivitamin and vit c everyday but right now that's all I take.

I'm supposed to see an endocrinologist back at Cleveland Clinic just haven't received the appointment time yet in the mail.

I want to ask about this too I seem to have the hyperadrenergic type too, developed mine after chicken pox. I am partially functional my biggest complaint at this point is my vision and funny feelings I get in my head? And when I get tired it doesn't feel like tired used to feel I feel like I"m fading. I'm interested in this testing and think I probably have the same issues I just don't know if the body can work it out on it's own over time?

lieze

[Stormie74]

This Dr. thinks everyone with Dysautonomia has an underlying infection whether it be Lyme, Mold, Heavy metals, etc.

Dustin

I'm pretty sure I have an underlying infection! I feel 95 percent better when I am on Augmentin (antibiotic). I've been tested several times, and I am a strep carrier. No, not strep throat, but strep throughout my system. It shows up in blood tests all the time. Sure would love to have the work-up that you have had. It would be very interesting to know all the details of all those tests!

Caron

[runningshoe]

Is your dr a lyme dr? I have lyme too. I have had pots for 3+ years but only got dx with lyme in December. I am still very early in my treatment and am not sure I have the right dr for it. Is your dr part of Ilads. I would love more info.

[StacyRN]

I want this test!!!!!!!!!!!!!! The website: ans-hrv.com has an incredible video about it (kinda hard to understand without a medical background, however...)

I am going to Vanderbilt for a research study on POTS next month, and I'm SOOOOOOOOOOOOO hoping they do this test! The website says Vanderbilt University is one of the centers that has the software for it, so I'm hoping they do...

It is AMAZING what this technology can tell you!

Does anyone who's been to Vanderbilt for a study know if they use it??

Stacy

[22dreams]

HI Dustin,

I have lyme too...neurological lyme and bartonella..which is the underlying cause of my autonomic nervous system dysfunction as well.

Throwing babesia and bartonella into the mix---man, you must really be suffering.

I am waiting to see a lyme-literate neuro but don't know how well-versed this doctor is with dx'g and tx'g dysautonomias.

Since this Md sees alot of neuro lyme (advanced) patients, I'm sure a lot of dysautonomia is seen as well. but that doesn't guarantee that the Md will know what to do or how to look at the test results.

I don't know that insurance will cover visits to 2 separate neurologists (HMOs!), so we'll see....

Unfortunately folks, the sensitivity of lyme tests runs about 46-56%.

to give you an idea, HIV tests are 99.5% sensitive.

For a test to be used as a diagnostic tool (does s/he have it or doesn't s/he?), the sensitivity must run 95% or better.

So the lyme tests are like flipping a coin. Actually worse than flipping a coin with your health because they are Antibody tests for,at best, 2 strains of the disease, not tests for 100-odd strains of the actual Bacterium itself. Those tests are not in existence. not yet.

So: a negative test does not mean that you don't have LD.

Anyway, I need to start tracking my blood pressure and heart rate at home and will create a separate post requesting suggestions.

The dysautonomia has really stepped up in the last month or so, esp in the last couple weeks.

I wish I could see your doctor---s/he sounds too good to be true!