NutrEval Test Results: Help!

[richvank]

From what this book states, THF levels do not matter at all for the FIGLu urinary markers. The simple folic acid form's function is to accept a carbon group in the FIGLu reaction. This is all a little too complex to fully understand, but it very plainly says that THF levels have no bearing on lowering or increasing FIGLu levels. You don't need methyl donors to lower FIGLu in the urine and if I am reading this right, it's biologically impossible to use THF to lower FIGLU.

Also what happens when one has been on high doses of B12 and THF with high FIGLu? Remember my test results are after at least 3 months of following these methylation block protocols, so I'm a little skeptical. Prior to the daily methyl B12 injections, I was taking bi weekly HydroB12 injections. I just don't see any reason for that marker to be high unless I just need regular folic acid.

Hi, Calico13.

I hope you will understand that I am trying to be helpful, not argumentative. I can understand why you might be a little skeptical, given your experience up to now.

I think I need to clarify something. When I mentioned THF, I was referring to tetrahydrofolate. That's not the same as methyltetrahydrofolate. It's a simpler folate form, without the methyl group. It's true that methyltetrahydrofolate does not react with FIGLU, and I think that's the point the Metametrix handbook is trying to make. However, tetrahydrofolate most assuredly is the form of folate that does react with FIGLU. And folic acid has to be converted into tetrahydrofolate before this reaction can take place. If you would like references for this, I can supply them.

As I wrote before, if all you had was high FIGLU, and not also high MMA, and if you were fortunate enough to have inherited a fast form of DHFR, then yes, folic acid would likely do the job for you, just like the Metametrix handbook says (I also have a copy of it, as well as the book by Lord and Bralley upon which it's based). However, you also had elevated MMA, and given that, it's likely that you still have a partial methylation cycle block, and will need both high-dose B12 and a reduced form of folate, preferably both folinic acid and 5-methyltetrahydrofolate.

So why didn't the three months of treatment correct this partial block? There are several possibilities. Assuming you were using high enough dosages of the proper forms of B12 and folate, then here's something I posted recently to the Yahoo CFS_Yasko group that may apply to your case:

"First, for the people who can tolerate the treatments but do not experience benefits from them, I suspect that the likely causes are that the methylation cycle and related pathways do not have all the nutrients they need to come back up to normal operation. These include amino acids (especially methionine, serine, glycine, glutamine, and cysteine), vitamins (especially the other B vitamins and vitamin C), and certain minerals (especially zinc, copper, magnesium, manganese, selenium and molybdenum). These deficiencies could be at least partly caused by dysfunction of the digestive system, and I think that there is a lot of potential in working to fix the gut problems. I think the biofilm treatments and Dr. de Meirleir's most recent gut work are things we should pay attention to here. I think the KPU or HPU that Dr. Klinghardt has emphasized comes in here, too, in some cases, depleting zinc, B6 and other nutrients."

As I noted in my comments on your NutrEval results, there were some indications of deficits in some of the vitamins and essential minerals. Perhaps that explains the lack of improvement on the treatment you underwent.

Of course, you are perfectly free to try taking folic acid. As I mentioned, Dr. Vinitsky advocates that, and he recommends a pretty high dosage. As you also may have noticed in the Metametrix handbook, there is some published evidence suggesting that folic acid can increase the risk for cancer in certain cases, though there are other papers concluding that it does not. We have discussed these reports on this forum in the past.

I hope this is helpful. I know that it must be frustrating to go through all of this.

Best regards,

Rich

 

[xchocoholic]

Hi Calico,

Thanks for posting this here. I may try this too. I was looking at the instructions ...

http://www.genovadiagnostics.com/fi...instructions/nutreval_fmv_doc_instruction.pdf

It says that you have to give up your non essential supplements and meds 4 days prior. Did you have to do that ? That sounds like the worst part of it to me. I'm pretty sure that without 5HTP, I won't get a good nights sleep. Also, did you do any of the additional tests they listed ? It looks like you got your aminos tested too.

Rich,

Thanks for explaining this to us. It helps to see the your theory talked out on a message board. I had no idea that there were so many different folates.

 

[Calico13]

Rich,
Yep I am pretty frustrated. That's what 10 years of illness does to you. I've been sick for as long as I can really remember and I've just about had it. This summer has been just absolutely miserable for me. I believe I did confuse the 2 types of folate and I apologize. I'm still skeptical, but am continuing to research and get more testing done to see where I need to go next.

xchocoholic,
Yeah I had to call around to local hospitals until one would agree to do the blood draws for me. Quest and LabCorp WILL NOT do it, so don't even waste your time with them. After I got my blood drawn, I waited around about 2 hours for them to centrifuge and separate the cells etc. I guess it was done properly as I didn't hear otherwise from Genova! haha

Yes I stopped taking all of my supplements for the time frame they suggested. Sadly I don't "feel" much from my supplements, so it wasn't a big deal to me. Those who take something and have these amazing pleasant side effects, I can never understand. heh I was still on HC and florinef because I'd die without those. It says it can affect the results, but my life is HC so I have no choice.

I had the whole NutrEval panel run which includes: Oxidative Stress, Organic Acids, Amino Acids, Essential Fatty Acids, Toxic and Nutrient Elements. I opted out of the Vitamin D add-on because I know mine is low. I figured there was no need in retesting it at this time.

Here's a link to the images of my NutrEval results if you are interested. The guest password is birdladyblog.

 

[dannybex]

Yeah I had to call around to local hospitals until one would agree to do the blood draws for me. Quest and LabCorp WILL NOT do it, so don't even waste your time with them. After I got my blood drawn, I waited around about 2 hours for them to centrifuge and separate the cells etc. I guess it was done properly as I didn't hear otherwise from Genova! haha

Oh man. This does get so frustrating. I was told by my doc who ordered the test that they don't do blood draws (a naturpathic clinic), so they send all their patients to LABCORP. So I called the nearest 'corp' and after trying to explain the complexities of the test, the Labcorp guy (who curiously sounded like he just got out of high school) told me that 'sure', they can do it, and will ship it off for me, and on top of all that, won't charge for the blood draw!

!!!???

So thanks for the warning. I guess I should call again on Monday to make sure they can do it. The blood draw procedures certainly look extremely complicated.

Yes I stopped taking all of my supplements for the time frame they suggested. Sadly I don't "feel" much from my supplements, so it wasn't a big deal to me. Those who take something and have these amazing pleasant side effects, I can never understand. heh I was still on HC and florinef because I'd die without those. It says it can affect the results, but my life is HC so I have no choice.

This is something I'm kind of freaking about, as I definitely notice a difference if I stop things like l-carnitine, coq10, glucosamine/chondroitin. And if I go for more than 2 days w/o some form of calcium -- strong leg cramps ensue. So might have to pop something.

Also found it a little troubling that they said don't drink more than eight - 8oz glasses of 'fluid', as that will lower creatine (or creatinine) levels. Well...it's uh...HOT...so will see how that goes.

Anyway, totally understand the frustration, having been sick for 12 years now, and having lost almost everything. But there are so many who have been sick for 20-30-40 years, and are still fighting on...plus I try to keep in mind folks who have recovered (even if they're the distinct minority), and that keeps me going...at least so far.

 

[Calico13]

I spoke to the local woman at Labcorp and I also called corporate. They both said the same exact thing. "we no longer draw blood for independent labs". The lady said there was a memo that said to no longer do this and the person I spoke to at corporate just flat out said, they won't do it. Since you have to do a morning urine, you really need to make sure that they understand what needs done! If they can't do it and you collect your morning urine, you'll need a new kit to start over again. I read the directions over the phone to the hospital I eventually went with so they understood the complexity of it. This isn't as simple as just taking blood out, mixing it by hand a few times, centrifuging it for 10 minutes and then shipping it off. All of the processing is upfront.

After the hospital prepped the vials, I took it all with me and shipped it on my own. I made sure the freezer pack was frozen over night and I brought a cooler with me too to keep everything cool.

Unless you are getting up and drink a ton of water at night, I don't see normal water intake being a problem unless you are drinking gallons. Your body needs more when it's hot outside. :Retro smile:

Maybe someone can explain to me the different forms of folate? I take Solgar Folate, so which form is that? I'm completely and utterly confused by this now...

Edit: Ok so we have THF, 5-methyltetrahydrofolate, folinic acid and L-methylfolate. Ugh...Yep none of this makes sense to me and google isn't helping at all.

 

[Sushi]

When I did the NutrEval test I went to a local hospital (my doc had a blood drawing agreement with them--though I have gotten free draws at other hospitals for Genova tests) and I also took it home and had FedEx pick it up so that I could confirm than they actually had it. As I remember, Genova gives you a prepaid mailer. I didn't want to trust the hospital to send it for me as the lab tech told me that FedEx's hospital pickups were not always on schedule and it would be safer to send it myself.

Also, I had the same experience with LabCorp--they wouldn't draw blood for a kit that I brought in to them--only for their own tests.

Sushi

 

[richvank]

Hi, Calico13.

Solgar folate is Metafolin, which is the Merck trademark for their 5-methyltetrahydrofolate.

I'm sorry for the confusion about the different forms of folate. There are three forms that are available as supplements:

1. Folic acid: This is a synthetic form, not found much in natural foods. It is the most common supplement form of folate, because it has a long shelf life. It is also the least expensive. It is an oxidized form of folate. In order to use it, the body must chemically reduce it first to dihydrofolate, and then to tetrahydrofolate (THF). Folic acid is added to bread and grain products in the U.S. and some other countries, to lower the incidence of neural tube defects such as spina bifida in babies. Most people are able to use folic acid, because the enzyme DHFR will convert it to THF. However, people vary widely in the rate of these reactions, and some people are not able to use folic acid very well.

2. Folinic acid: This is chemically 5-formyl tetrahydrofolate. It is the same as the drug leucovorin, which has been used for many years as an adjunct to substances used in cancer chemotherapy that block part of the folate metabolism. Folinic acid is a chemically reduced form of folate that does occur naturally in foods and in the body, and in most people it can be converted fairly readily to other forms of folate for particular purposes. Folinic acid is used widely by the DAN! doctors in the treatment of autism.

3. 5-methyltetrahydrofolate: This is also called Metafolin, FolaPro, L-methylfolate, and 5-MTHF. It is the reduced form of folate that carries a methyl group, and is the one needed directly by the enzyme methionine synthase, which links the folate metabolism to the methylation cycle, and which is partially blocked in CFS and autism. This form does occur naturally in the body and in natural foods. It is the main folate form in the blood in humans, and is the only form that crosses the blood-brain barrier. For people who have polymorphisms in the MTHFR enzyme, this form of folate is particularly helpful, because they are not able to make it very rapidly in their cells, and it is specifically needed to get the methylation cycle going.

THF (tetrahydrofolate) is sort of the "hub" of the folate metabolism. By taking on different ligands, it forms the various coenzyme forms of folate that are used for various purposes. It is not available as a supplement.

One other thing I forgot to mention in my previous email, Calico13. I suggested what may have caused the lack of response to the methylation treatment for three months that you reported. In addition to the things I mentioned, I would add mercury toxicity in your case, given the elevated mercury level in your red blood cells. Mercury is able to block some of the enzymes in the methylation cycle and related pathways. In the clinical study Dr. Nathan and I carried out (reported at www.cfsreseach.org) there was one 84-year-old lady with CFS who did not make much progress for six months on the methylation treatment. Dr. Nathan tested her for heavy metals and found mercury elevated. He gave her chelation treatment in addition, and at nine months, she was able to travel to Paris with her friends. You might want to consider some type of mercury detox with your physician.

Best regards,

Rich

 

[Calico13]

This does help A LOT. Thank you very much. However I don't quite understand if someone has a partial methylation block, that you need to take the non-methylated form of folate (folinic acid) to get rid of one of the markers. My test results are now making more sense to me considering I've never taken folinic acid (didn't realize there was a need for those 2 different types) and was just taking solgar folate during those months before.

As soon as I am somewhat stable, I'm going to try getting back on Cutler's protocol. I couldn't even take 25mg of DMSA every 4 hours without feeling violently ill. It wasn't right away, but over time things just got progressively worse and worse. I tried fighting through it, but it got to be too much.

The sickness from chelation is the reason why I started seeking help from doctors as it made me soo sick...The rashes alone were life altering because I never knew when they'd show up or what triggered them. Then the muscle shakes and severe loss of appetite to the point where I loss 12 pounds was when I decided it was in my best interest to just stop. That was almost 2 years ago now! :worried:

I am quite concerned that I still have that much mercury in me though. As I said earlier, I did about 10 rounds, with rounds lasting about 4-5 days taking 4-5 day breaks in between each. My provoked urinary mercury was 30mcg when I had it tested years ago before my amalgams were removed, but I have had no exposures since then that I know of. I don't even eat fish as it makes my lips feel weird (like an allergy) and won't ever get another vaccine again. It's been at least 7 years since my last one at this rate.

 

[richvank]

This does help A LOT. Thank you very much. However I don't quite understand if someone has a partial methylation block, that you need to take the non-methylated form of folate (folinic acid) to get rid of one of the markers. My test results are now making more sense to me considering I've never taken folinic acid (didn't realize there was a need for those 2 different types) and was just taking solgar folate during those months before.

As soon as I am somewhat stable, I'm going to try getting back on Cutler's protocol. I couldn't even take 25mg of DMSA every 4 hours without feeling violently ill. It wasn't right away, but over time things just got progressively worse and worse. I tried fighting through it, but it got to be too much.

The sickness from chelation is the reason why I started seeking help from doctors as it made me soo sick...The rashes alone were life altering because I never knew when they'd show up or what triggered them. Then the muscle shakes and severe loss of appetite to the point where I loss 12 pounds was when I decided it was in my best interest to just stop. That was almost 2 years ago now! :worried:

I am quite concerned that I still have that much mercury in me though. As I said earlier, I did about 10 rounds, with rounds lasting about 4-5 days taking 4-5 day breaks in between each. My provoked urinary mercury was 30mcg when I had it tested years ago before my amalgams were removed, but I have had no exposures since then that I know of. I don't even eat fish as it makes my lips feel weird (like an allergy) and won't ever get another vaccine again. It's been at least 7 years since my last one at this rate.

Hi, Calico13.

The reason Dr. Yasko (and I) suggest taking folinic acid in addition to 5-methyltetrahydrofolate is that folinic acid can more readily be converted to the other coenzyme forms of folate than 5-methyltetrahydrofolate can.
5-methyltetrahydrofolate must go through the methionine synthase reaction before it becomes tetrahydrofolate and can then be converted to other folate forms. The problem in CFS and autism is that the methionine synthase reaction is partially blocked, and until it gets to running more normally, 5-methyltetrahydrofolate will not be able to contribute very much to forming the other coenzyme forms of folate. In the meantime, it's helpful to be able to support them by another route, and folinic acid is the best way to do that.

Some of these other forms of folate support reactions that make RNA and DNA, ATP, and other important substances in the body. New DNA is important for making new cells, and that happens at the highest rates in the bone marrow, where new blood cells are made, and in the lining of the intestine, where the enterocytes (cells lining the small intestine) turn over rapidly, are sloughed off, and need to be replaced with new cells.

When a person's body is not able to make new DNA readily, the rate of production of new red blood cells goes down, so that fewer of them are produced, but the ones that are produced are stuffed with more hemoglobin than normal, and this constitutes a macrocytic anemia. On the complete blood count report, the RBC value will tend to be low, and the MCV and MCH values will tend to be high. At first, there is only a tendency, but as the situation becomes more severe, these values move outside their lab reference ranges.

On the mercury detox, I'm sorry that you had such an unpleasant experience with that. Quite a few people have reported bad experiences with mercury detox. I don't know if anyone really completely understands how this should be done in every case. Many people have reactions to the sulfur-containing chelators, DMSA and DMPS. I think there are several possible reasons for this. One possibility is that the chelators pick up mercury ions and then release them and they are then mobilized into the blood stream and can bind to other enzymes and cause more symptoms. Andy Cutler's frequent dosing scheme with alpha lipoic acid is designed to prevent this remobilization of mercury. Another possibility is that some of the sulfur-containing chelator is metabolized, and ends up overloading the sulfite oxidase enzyme. Molybdenum supplementation can help with this in some cases. Another is that some of the sulfur ends up feeding sulfate reducing bacteria in the gut, which produce excessive amounts of hydrogen sulfide, and that is a toxin at high enough levels. There is a do-it-yourself urine test for hydrogen sulfide that is offered by a Belgian lab, and this will indicate whether there is a large population of sulfate-reducing bacteria in the gut.

Mercury can stay in the body a long time. Its residence time in the brain can be at least several years. I don't know why your blood level is high so many years after you have had known mercury exposure. I'm wondering if there is a mercury vapor source in your living environment. Some people have had mercury spills in their homes or cars from playing with mercury as kids or teenagers, such as into carpets, where it is not easily seen or cleaned up, and they have continued to be exposed for a long time to the mercury vapor. Broken thermometers or broken flourescent light bulbs can dump mercury into the living environment also.

I hope this is helpful.

Best regards,

Rich

There are some newer approaches to detoxing mercury. One of the leaders is Dr. Dietrich Klinghardt. He recommends OSH#1 and MicroSilica, from BioPure. OSH#1 is not advertised as a chelator, but as a treatment to build glutathione and to combat oxidative stress. The expensive FDA-approved testing necessary to qualifiy it as a chelator has not been done, but I think it should be noted that Prof. Boyd Haley originally designed this molecule to be a mercury chelator, though he is not able to sell it for that purpose. MicroSilica consists of silica of very small particle size, incorporating many sulfhydryl groups. Mercury tends very strongly to bind to sulfhydryl groups. This substance is not absorbed into the body from the gut, but binds mercury in the gut and carries it out in the stools.

I think it's important when detoxing mercury to have built up any deficiencies in the vitamins and minerals, to have the gut operating well enough to have a bowel movement at least once per day, and to drink lots of water to flush the kidneys.

 

[dannybex]

Labcorp Update...

Hi Sushi and Calico (and all),

After reading your replies over the weekend I made it a point to call both the national/corporate and local #'s this morning, and again, got a completely different answer than you both did. Of course I don't mean to imply at all that you're lying :Retro smile: but just that Labcorp perhaps doesn't have a strict, stringent policy...?

The woman I spoke with at the national level said yes, they do outside labs all the time, but to make sure they would do it here, she gave me the number of client services in my area. So I spoke with the local client services rep, who basically said the same thing. She said they do it all the time -- said they'll send it out as a "pass-through" -- meaning, it's not a test they offer, but they'll draw the blood (for a fee of $30), and then will ship the kit to whatever lab it needs to go to for processing. (The guy I spoke to the other day said it was against the law -- maybe it's a state law? -- for patients to ship their own blood samples.)

Crazy, isn't it? But I asked both reps and also explained how I'm disabled and needed to make sure that they could do it, as I'll have to be off all supps for 4 days, then fast, then have them take 8 vials of blood, 5 for the NutrEval, 3 for the Methylation Panel (kind of worries me...sounds like half of my blood supply!), so I can't have anything go crazy-wrong. They assured me again that they 'do it all the time'.

But I may just call them again tomorrow and see what kind of answer I get then.

 

[Calico13]

I don't know what to tell you other than, they refused to do it. It wasn't even up for discussion on the phone with the national reps. As soon as the word "Genova Diagnostics" came out of my mouth, I was told "Oh no we don't do lab draws for them or any independent lab". The local lady had to get back to me a few days later to ask her supervisor. Perhaps there are different rules/regulations in Washington? I've sent in my own specimens with no trouble at all. Of course it's always been within a kit from some company. It's not like you are sending your blood in an envelope...haha

Now when I called Quest, I got a similar answer as to what you are describing. Part of the problem was that I had to come in with another lab order for them to do it, which would be getting billed to Quest. So basically they wouldn't do it unless I was giving Quest other business. However she said that she couldn't guarantee the lady at the office would even be willing to do it. I told her that wasn't really good enough for me as I needed to make sure this was all done on that day. After all of the phone tag I played with Quest and Labcorp, I just started calling local hospitals and the first one that sounded competent and or not completely stupid, is the one I went to!

Another thing I wanted to caution you on. If you have Labcorp send it out, make sure it's kept cold before it is picked up. You'll have to either hold your first waking urine before you get there or take your frozen urine samples with you. I'm pretty sure they have to be frozen a few hours before shipping too. I personally don't trust these labs at all. They disregard special handling techniques all the time and you'd have no way of knowing until after you get the results back.

I'm curious to hear how this all turns out. Keep us updated!

PS: The same hospital that did my NutrEval test also drew Pyruvic acid for me over the weekend. They had to order in a special reagent, so I should be getting those test results this week, I'd imagine.

 

[Calico13]

Homocysteine 4.3 (<10.4)

The solgar folate/methyl B12 was enough to keep that low, yet my urine MMA is way too high. This makes no sense to me.

 

[dannybex]

Testing Update...

Well...:Retro smile:...what can I say, except AM I GLAD THAT'S OVER. At least I hope it's over...

After reading your and Sushi's posts about Labcorp refusing to draw blood for any outside labs, I called both my doctor's office, and then called L-C back again...several times...over several days, to make sure they would indeed do the blood draws. I also called Vitamin Diagnostics. The woman I spoke with there said that when it comes to Labcorp drawing for outside labs, 'it depends on which state you live in'.

What a CIRCUS. I spoke with the national rep from Labcorp, she said they will do it, but will charge a fee for the blood draw. So I called the guy I had originally spoken to back, and he said, yes, they do charge a drawing fee. I asked how is that best paid for, by cash, credit card, check? He replied "Well, we don't have any way to accept payments at this location, so you'll have to go to (their other location) about 3 blocks away. So...how can they draw the blood for outside labs if they charge a drawing fee, but can't accept the money at that location? !!!!!!

So I called the other location, left a voicemail. Got a call back the next day saying it was good that I mentioned the NutrEval test, because the best place to go for that is their MAIN branch -- about 10 blocks away -- they run NutrEval and other outside tests there "all the time".

So just to make absolutely sure, I made one more call, and am glad I did. They said that even though Genova (NutrEval) is open on Saturday, it's best to do the blood draws for 'complicated' tests on Mondays. So three more days of 'no supplements', digestive enzymes, etc..

I must admit I was still anxious come Monday morning, but got up around six, did the urine parts of the test, put 'em in the freezer (for 2 hours per directions), then got up around 8:30...and finally around 9:30 took a cab to the lab.

And to make a long story short -- after all of that -- it all went surprisingly smoothly. 9:45ish was a good time to arrive -- I had the place to myself -- and 2 folks at the front desk immediately recognized the NutrEval kit, and within minutes I was in, getting poked by a technician, while a 2nd tech was making sure the five vials were handled in proper fashion.

Haven't had any calls from Genova, or Vit Diagnostechs, so I'm assuming everything arrived in good shape. We'll see...

 

[Calico13]

Wow I am really glad you got that all figured out!! Now you wait for results I think it took about 2 weeks to see mine. Please post your results if you don't mind. I am very interested in them!

 

[richvank]

Homocysteine 4.3 (<10.4)

The solgar folate/methyl B12 was enough to keep that low, yet my urine MMA is way too high. This makes no sense to me.

Hi, Calico13.

Quite a few people who have autism or CFS have low homocysteine, even though their methylation cycle is partially blocked. There are several possible reasons for this. One is low methionine, which you don't have. Another is a polymorphism in the MAT enzyme, which converts methionine into SAMe, or a low ATP status, since ATP is needed in this reaction. Another is a polymorphism in the glycine N-methyl transferase enzyme, which you don't appear to have, given your elevated sarcosine. Another is polymorphisms in the AHCY enzyme, which converts SAH to homocysteine. These are characterized on the Yasko nutrigenomics panel. Another is polymorphisms in the CBS enzyme, also characterized on the Yasko panel. Given your cystathionine and cysteine levels, you may have one of these.

Contrary to the "cook book" explanations, homocysteine level is not a reliable marker for partial methylation cycle block. MMA is a more reliable marker for B12 hijacking, and if it occurs together with elevated figlu, that's a pretty good indication that a partial methylation cycle block is present. To really nail it down, the Health Diagnostics and Research Institute (formerly Vitamin Diagnostics) methylation pathways panel is the one to get. It measures SAME and SAH directly, as well as the folate metabolites and the reduced and oxidized plasma glutathione.

Best regards,

Rich

 

[richvank]

Hi, Dan.

I, too, am happy to hear that you were able to get your samples sent off O.K.! Hopefully the results will come back before too long.

Best regards,

Rich

 

[Calico13]

I was doing a little more pondering over that low VMA result and that actually makes sense. I was sleeping all night long, so I was lying down. Of course my VMA would be low. My NE levels are high when I stand up and since I wasn't standing for any longer than the amount of time it took for me to reach the bathroom (10 secs?), it couldn't have raised it that much in that short of time.

I finally did get my catecholamine levels back from the stupid hospital...I just had to scream at the secretary! I really wish I were kidding, but after 9 weeks of hearing the same bullcrap line "Let me get your number and I'll call you back" with no resolution, a part of you just snaps and lets it rip. Well it worked.

Supine
Dopamine <20
Epinephrine <10
Norepinephrine 125

Tilt
Dopamine <20
Epinephrine 22
Norepinephrine 613

This is classical POTS. The NE levels increase drastically upon standing for some reason doctors can't figure out. There are a ton of hypothesis or theories out there, but none of them help you get better so it doesn't really matter.

 

[richvank]

I was doing a little more pondering over that low VMA result and that actually makes sense. I was sleeping all night long, so I was lying down. Of course my VMA would be low. My NE levels are high when I stand up and since I wasn't standing for any longer than the amount of time it took for me to reach the bathroom (10 secs?), it couldn't have raised it that much in that short of time.

I finally did get my catecholamine levels back from the stupid hospital...I just had to scream at the secretary! I really wish I were kidding, but after 9 weeks of hearing the same bullcrap line "Let me get your number and I'll call you back" with no resolution, a part of you just snaps and lets it rip. Well it worked.

Supine
Dopamine <20
Epinephrine <10
Norepinephrine 125

Tilt
Dopamine <20
Epinephrine 22
Norepinephrine 613

This is classical POTS. The NE levels increase drastically upon standing for some reason doctors can't figure out. There are a ton of hypothesis or theories out there, but none of them help you get better so it doesn't really matter.

Hi, Calico13.

Sorry that you had to scream to get your results.

I don't know if you're interested in reading my hypothesis for the NE rise upon standing, but I'll offer it anyway! -)

As you may know, NE is used by the nervous system to contract the smooth muscle around blood vessels. In POTS, there is a problem in delivering sufficient blood to the upper part of the body when the person stands, because gravity tends to make it pool in the lower extremities. The sympathetic nervous system responds by constricting blood vessels, and NE is released to the blood in this process.

So why does this happen? In many PWCs, the total amount of blood is quite a bit below normal. This results from diabetes insipidus (not the same as diabetes mellitus). In diabetes insipidus, not enough antidiuretic hormone is secreted by the hypothalamus/pituitary. The result is that the kidneys dump too much water from the blood into the urine, and the blood volume decreases. The person is usually thirsty, and keeps drinking fluids, but never really keeps pace with the loss of water into the urine, so the hypovolemia is a constant problem. The low blood volume results in low venous return to the heart, and that lowers the cardiac output, because the heart can pump out only what it receives.

Another aspect is that many people with CFS have diastolic dysfunction of the heart, and this lowers the cardiac output, also. Low cardiac output shows up big time when the person stands up, and then the sympathetic nervous system responds by constricting blood vessels and raising the heart rate, in order to try to keep the person from passing out.

In the GD--MCB hypothesis, both the low secretion of antidiuretic hormone and the diastolic dysfunction are caused by glutathione depletion. The way to correct that is to lift the partial methylation cycle block, which we have shown allows glutathione to come back up ( see the treatment study at www.cfsresearch.com ). The protocol I have suggested for doing this can also be found on that site. So maybe this hypothesis can actually help a person to get better! That's the goal, anyway.

Best regards,

Rich

 

[dannybex]

Thanks Rich and Calico for your kind words. I will definitely post the results at some point...hopefully before the end of the month.

Calico...I totally understand the feeling one needs to SCREAM to be heard. And so could most in my local support group. The horror stories are endless, and truly frustrating.

Take care,

Dan

 

[Calico13]

There are many many reasons as to why someone can have "POTS". The problem is that so many people are grouped into that category. There is an entire write up on this very site, which breaks down the different types, subsets and potential causes nicely. There is also dinet.org which I'm sure you are aware of as well. I thought treating the adrenals was going to fix me and it hasn't.

I haven't been able to figure out what type or subtype I am because the doctors have been so incompetent. Some hospitals say a standing NE level of >600 is hyperadrenergic while others say it's more like >1000. I refuse to have the blood volume testing done because it involves injecting myself with radioactive dyes and isotopes. I don't need to add anymore toxins into my body even if it's for medical purposes. I have tons of gadolinium in me from pituitary MRI's, which were all normal btw.

The doctor wrote this on my report, which is like a foreign language to me, but she suspects I have dysautonomia. I was supposed to get the QSART and HRV testing done, but with their incompetence I have no desire to go back there.

"The tilt test is abnormal due to early accentuate postural tachycardia, late accentuated postural tachycardia and late diastolic orthostatic hypotention. These findings suggest orthostatic ANS dysfunction with preferential beta-1 & late beta-2 adrenergic activation and can predispose to postural intolerance symptoms especially under provocative/unfavorable biological environmental interactions. Clinical correlation is needed"

I am aware of DI. I had that diagnosis from a "natural" doctor and took DDVAP for a while time without improvement. It did not help my heat intolerance or my heart rates whatsoever. It was just a huge pain in the butt as I had to be very careful with how much fluid I took in and with adrenal problems, I was already salt wasting! I haven't taken the meds for at least a year or more and my urination has regulated itself now. No idea why or what happened to change that.

I have no idea if I could have diastolic dysfunction. I'll bring it up to my EP when I have my next check up in September. I had an echo done, but can't see if that was accounted for. He's pretty much worthless too. When you walk into a cardiologist/EP office looking healthy and are under the age of 40 you get treated terrible.

Since I have high levels of cysteine, I don't know what I'm supposed to do to raise gluathione. Doesn't seem like I fit the mold here.