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» LymeNet Flash » Questions and Discussion » Medical Questions » I did a no-no - chemistry wise (Page 2)

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Author Topic: I did a no-no - chemistry wise
TerryK
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Just checking in here quickly -

Klutzo - you can have a metamatrix test for amino acids run and find out the status of your amino acids. They then recommend a customized formula that is specific to your test results. This helps with balance.

I think anyone who has a lot of depression should consider that they could be one who has difficulty converting folic acid to it's active form.

You might consider checking into the methylation cycle defects that seem to be common in lyme patients. MTHFR testing can be run at a regular lab through your doctor. My sister has managed to get testing for herself, her children and my mother, all through a regular lab, paid for by insurance.

You can search here for methylation or look for info about Dr. Yasko's work.

This site has some good explanations for methylation cycle issues. Scroll down to the text.
http://heartfixer.com/AMRI-Nutrigenomics.htm

here is the yahoo group for methylation cycle issues. This is mostly adults, some with lyme disease, some who are diagnosed with Chronic Fatigue Syndrome.
You can ask questions there.
http://health.groups.yahoo.com/group/CFS_Yasko/messages

Here is the other Yasko group, mostly parents treating autistic children but very helpful in understanding the issues of methylation blocks.
http://www.ch3nutrigenomics.com/phpBB2/index.php?sid=6ddb9f1180ebc6eeaebc66541c1d3f04

This may help explain a simplified approach to treatment. It is the theory of one PhD (not an MD).
http://www.lymeinfo.net/methylationblock.html

When Dr. Yasko adjusts supplements to work around methylation cycle defects (nutrigenomics) she runs organic acid tests and various other tests and can figure out with those to some degree what is happening with detox issues and perhaps some issues with brain chemistry. She monitors treatment this way.

Edited to add:
The other thing you can try in order to see if folic acid conversion might be an issue is a metagenics OTC product called folapro. It is the active form of folic acid - already converted. You must be careful though because you can have a strong detox reaction if you do have a problem with conversion.

There are prescription products now on the market with the active form of folate that are used to make antidepressants more effective - one is called deplin the other is metanx.

Be careful with them though because they are in high doses and can cause some pretty severe detox reactions for some people.

The prescriptions are usesd for neuropathy too I believe as the active form of folate could be useful for people who have neuropathy.

Terry

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TerryK
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TO LIFE asked if I have OCD. Also suggested that I have my folate levels tested.

My response:
Thanks TL - No OCD thank goodness.

Folate has been checked many times. They've always been normal. Not sure but I don't think folate levels will show a conversion problem.

I have had the full methylation cycle Yasko test. Lots of significant mutations including folate conversion issues.

Terry

[ 08-23-2009, 02:12 AM: Message edited by: TerryK ]

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Bobidor
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Marnie, does this mean 5-HTP is bad for Lymies?
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TerryK
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Can't remember exactly what was said but in a nutshell TO LIFE seemed to suggest that since my folate levels are normal, perhaps my test results that indicate a conversion problem are incorrect.

TL - No. The genetic test shows 2 of the MTHFR mutations. I have a strong response to supplementation with 5-methyl tetrahydrofolate and no response to folic acid that is contained in regular supplements.

I'm not sure which folate they are testing with blood tests and don't feel a need to look into it further. Blood levels likely don't reflect other tissue levels anyway. There is a red blood cell test but I don't feel a need to bother with that at this point.

Perhaps if my red blood cell mass does not return to normal at some point I'll consider asking for a red blood cell folate test. Not sure about that though because I'm not keen on having another radioactive tracer put in my body to test for red blood cell mass. 2X's is enough. LOL

Terry
I'm not a doctor

[ 08-23-2009, 02:11 AM: Message edited by: TerryK ]

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TerryK
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Bob- I'm sure Marnie will be along to respond but I'll throw in my 2 cents.

5 htp does not convert to quinolinic acid. It is in an alternate pathway that leads to serotonin. Look at the chart about 1/2 way down the page.

http://en.wikipedia.org/wiki/Tryptophan

Check out the safety of 5 htp with your doctor just to be sure if you haven't already.

Marnie- I wonder if excess niacin created via quinolinic acid may be partly why some of us have orthostatic hypotension? We know niacin dilates blood vessels and I'm pretty sure that includes capillaries. Niacin is contraindicated in those who have hypotension.

What do you think?

Terry
I'm not a doctor

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Dawn in VA
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Terry, you're right about the folate levels. Need to test folinic acid (5-formyl tetrahydrofolate) I suppose.

When I developed 3 blood clots via a PICC, my insightful LLMD tested me for MTHFR. Turns out I'm homozygous for the mutation.

She put me on Cerefolin (strangely, I don't have elevated homocysteine like some folks do with it). My mom had 2 miscarriages- I'm the only one who made it- so that was another clue.

Your bit about having detox rxns while being on it hit hard for me. I've been on Cerefolin off and on for 2+ years now- off now- b/c I just feel strange, worse somehow, when taking it. Never knew why. But now... aha!

Is Yasko's full methylation test very pricey and does she/they offer ways to get around what one might lack once the results come in? Have you pursued sulfuration pathway testing as well?

Sorry for the many questions. Have been thinking about pursuing this for some time. Just waiting to win a mini-lottery! LOL

Have methylcobalamin injections been helpful for you? I have been on them for a couple of years straight and they save my emotions sometimes. REALLY lessons depression. I never get the "energy kick" that some claim to, but I'll take the lift emotionally. They've been wonderful for me.

--------------------
(The ole disclaimer: I'm not a doctor.)

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TerryK
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Hi Dawn:)

Dawn wrote:
When I developed 3 blood clots via a PICC, my insightful LLMD tested me for MTHFR. Turns out I'm homozygous for the mutation.

So glad your doctor thought to test you for this. Dr. Yasko states that if you have some of these mutations they must be treated because it's like having diabetes and not treating it. You will pay at some point.

Dawn wrote:
Your bit about having detox rxns while being on it hit hard for me. I've been on Cerefolin off and on for 2+ years now- off now- b/c I just feel strange, worse somehow, when taking it. Never knew why. But now... aha!

Some of how supplementation affects a person depends on the combination of methylation cycle mutations. My sister is in the same situation as you. She cannot take the high dose for very long because she starts feeling very bad.

Keep in mind that I'm not a doctor. I also don't know everything there is to know about this but I'll tell you what I know.

From what I've read, one could feel bad for 2 reasons. One is you could have a CBS upregulation or a SUOX mutation. This would cause any supplements that you take to correct the MTHFR mutation to be drained down the transulfuration pathway which would create more toxins for your body to deal with.

If you have these other mutations, you must work around those as much as possible before supplementing with things to unblock the MTHFR pathway.

That said, Rich (the creator of the simplified protocol) has found that those who have this problem may still be helped with the simplified protocol even if they don't deal with the sulfur issues. It probably really depends on the combination of your mutations. His study was small and thus there were likely combinations of mutations that were not represented.

The other thing that can happen is the folate can start a detox reaction. Heavy metals and other chemical toxins start to be released, especially for those with MTR and MTRR mutations combined with MTHFR mutations (lucky me).

At the very least, one should have a heavy metal binder on board so that the metals that are mobilized can be removed from the body. Yasko monitors heavy metal release and other toxins through blood tests and adjusts the protocol as needed based on test results.

I think the full Yasko test was $625 + shipping when I took it. This included the sulfur SNP's. She also sends a detailed supplement list with the test results. They are also listed on the yasko group for each mutation, including the one that you have. You have to join to get them but it's easy and free.
http://www.ch3nutrigenomics.com/phpBB2/index.php?sid=6ddb9f1180ebc6eeaebc66541c1d3f04

Here is the yahoo group
http://health.groups.yahoo.com/group/CFS_Yasko/messages

Here is another methylation group. Maybe a little more advanced than the yahoo group.
http://me-cfsmethylation.com/viewforum.php?f=7

I don't take B-12 shots. Yasko recommends a number of active forms of B12.
Perque B12
Dibenzcozide and some others

Last time I was tested, my B12 levels were actually high but my blood test results indicate possible anemia. No one seems to be able to figure that out other than my LLMD say's it could be related to babesia treatment. Makes sense since Babs lives in the red blood cells and bursts them.

Yasko testing includes transulferation pathway SNP's of CBS and SUOX. I have single mutation in the CBS SNP. I have to limit sulfur and purge ammonia. There are some posts here about methylation.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77338

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/81897?

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78932?

So much of what one takes depends on results of all the SNP's. For example, I am COMT++. This means that I don't process dopamine very well. I'll have excess methyl groups and increased dopamine. I should avoid a lot of methyl groups, like methyl B12 because excess methyl groups can cause mood swings in someone who is COMT++.

Hope this all helps and makes sense. It's late and I'm tired and rummy so I apologize if this is not as clear as it could be.

Terry

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Dawn in VA
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Many thanks, Terry!

Interesting about your sister...
I will keep you posted if I find something that does not wack me out yet provides good supplemenation.

Terry said:
Last time I was tested, my B12 levels were actually high but my blood test results indicate possible anemia. No one seems to be able to figure that out other than my LLMD say's it could be related to babesia treatment. Makes sense since Babs lives in the red blood cells and bursts them.

Me too, Terry. I am consistently borderline-low on ferritin testing and high on B-12. I have never been testing for B-12 while not being on the shots, so am not sure what the results might be otherwise. And RDW is always high. (I pet my spleen daily, that poor girl. Keep going, good ole spleen!)

I suspect the same as you- I can't think of another reason aside from Babesia. My duncani titers are high even with 2+ years of Tx. Nasty bug.

Yasko's test sounds very pertinent. Thank you so much for the information and for the links.

I think I will start stuffing a few bills under the mattress each month to save up!

BTW, if that is you "tired and rummy", I am humbled! [Big Grin]

--------------------
(The ole disclaimer: I'm not a doctor.)

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seekhelp
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Terry, I had a holistic doc treat me for the Methlenetetrahydrofolate Reduction (MTHFR), DNA.

The result says I am heterozygous for the C677T mutation and does not have the A1298C mutation.

My doc said if I take methyl B-12 and high doses of MSM and DMG supplements, all my issues will be fine and I bypass this defect.

Is this right? I didn't understand this test at all. Does it mean I have detox issues and have to treat Bb differently? Any advice is appreciated. The test was run by Quest Diagnostics.

My B12 levels in blood are off the charts high, BUT my lab work shows my plasma hemoglobin to be high (red blood cells bursting). The high result seems to differ by the month. I wonder if a cycle?

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Dawn in VA
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Terry, you said:
I have to limit sulfur and purge ammonia.

I'm in the same boat. I have sulfur metabolism issues all over the place, from allergies to sulfa drugs to problems with NAC, even the nebulized form of glutathione (<= asthma attacks, even with high dilution). On the contrary, glut. suppositories, with and without the coffee extract added, work well for me.

I desperately want to try IV glut., but at the same time am fearful that it will provoke something unintended until I get the transulfation pathways managed.

I'm sure this has been discussed up and down on the board, but have you found a safe way to get rid of excess ammonia? Marnie had mentioned xeolite in a previous post, but I'm not ready to "go there" just yet. Maybe yucca?

Hope you are feelin' GOOD today!

--------------------
(The ole disclaimer: I'm not a doctor.)

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Dawn in VA
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Sorry to take over that post with the methylation business--

Back to quin. acid--
I remember reading in a CFS/ME book that quinolinic acid and hyaluronic acid (and others, but I can't recall which) were way up in such patients. Toxic overload and inability to get rid of them led to neuro stuff and the infamous trigger points of FM.

I also vaguely remember reading (again, "somewhere"- sorry for not references) that guaifenesin was suggested as a treatment for some FM/CFS/ME b/c of its ability to fit certain kidney receptors and get quin. out. Is it then recirculated in the bloodstream? That I have no idea about.

I also VERY vaguely remember something about salicylates' preferential blocking of those receptors and advice about avoiding them for those on guaifenesin.

That's all I can recall on this. Ack.

--------------------
(The ole disclaimer: I'm not a doctor.)

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TerryK
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I have some suggestions and comments but I'm getting up at 3:00AM to leave at 4:30 for the airport tomorrow morning so I won't be able to respond tonight but I'll come back after my trip to the LLMD and respond.

It might not be for a few days.

Take care all,
Terry

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Dawn in VA
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Safe trip, Terry.

--------------------
(The ole disclaimer: I'm not a doctor.)

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TerryK
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Dawn -

If I were in your situation, I'd probably try the simplified protocol and forgo the large doses of active folate since it tends to cause too much detox for most with the methylation cycle problems.

Since you know you have a sulfur problem, at the least, taking molybdenum should help your asthma and help you get rid of excess sulfur + getting rid of excess sulfur should help lower ammonia. It won't solve the whole problem but it's a good start. Molybdenum sure helped my husband get off asthma meds.

Dawn asked:
have you found a safe way to get rid of excess ammonia? Marnie had mentioned xeolite in a previous post, but I'm not ready to "go there" just yet. Maybe yucca?

I'll tell you what I know about ammonia. Unfortunately, I don't know anything about xeolite for ammonia.

I'm cutting and pasting from another thread about ammonia:
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/82975?

I forgot to mention l-ornithine in the thread above. I've used it for years to get rid of ammonia.

Dr J's ammonia info
http://tinyurl.com/yqc3hw

Dr. J's neuro tox formula
http://tinyurl.com/n47s8n

Some of these things are recommended by Yasko to lower ammonia

Charcoal and Magnesium Flushes
Dosage: 1 to 2 capsules of charcoal, followed by enough Magnesium Citrate to produce a Bowel Movement within 8-12 hours. Once per week or more

Yucca sprinkled on meat
lower meat intake - 1 meal per day
ARA 6 - larch powder

Ammonia Support RNA Dosage: 1/4 - 1/3 dropper or 0.25-0.50mL up to 3x a day with meals - from Yasko's site - expensive
http://www.holisticheal.com/ammonia-support-formula.html

I *think* Yasko's product bioOrgan works on ammonia because it has low dose BH4 but you would need to do some research to verify that.

carnitine
Butyrate
Cholestyramine can supposedly reduce ammonia

Low dose BH4 -
It is hard to get. You can get it here but you must have a phone appointment first and the appointment costs money. Prices for the BH4 have been changing because it has been hard to get. It is directly involved with removing ammonia.
http://www.startlivingwelltoday.com

May want to avoid ammonia provokers. It's not possible to avoid them all but maybe cut down what you can.
protein
B6
glutathione
taurine
NAC


A member BigDreams recently sent this info for sulfur: I haven't tried it yet but I plan to give it a try.
http://www.bionatus.com/nutramedix/pdfs/sparga_flyer_Bs.pdf

Dawn wrote:
On the contrary, glut. suppositories, with and without the coffee extract added, work well for me.

That's great. Can you give the brand and where you get it. I think I might give it a try if I feel that the acetyl glutathione is causing sulfur issues. I haven't been measuring mine since I started to this is a good reminder that I need to do that.


Dawn wrote:
I desperately want to try IV glut., but at the same time am fearful that it will provoke something unintended until I get the transulfation pathways managed.

I'm afraid of it too but still want to try it. Even with the transulfuration pathway under control you could bring it out of control with this. I have no idea how IV glut would compare to other glut supplements. It seems like it might be dose dependent? The higher the dose, the more sulfur.

Dawn wrote:
I remember reading in a CFS/ME book that quinolinic acid and hyaluronic acid (and others, but I can't recall which) were way up in such patients. Toxic overload and inability to get rid of them led to neuro stuff and the infamous trigger points of FM.

That's interesting. If looking at the path to quinolinic acid here:
http://en.wikipedia.org/wiki/File:Tryptophan_metabolism.png

you will see kynurenine upstream of quinolinic acid. So instead of making serotonin we are making quinolinic acid and other toxic metabolites, kynurenine being one of them.

When some of my lab results showed high kynurenine, I was told that this indicates high markers for pain and at the time my pain was through the roof.

This fits perfectly with what you are saying about trigger points which I had really bad at the time. Trigger points cause all kinds of problems, including muscle pain, referred pain, nerve pain and so many other symptoms.

My pain got 70% better on IM ceftriaxone. I've been off of it since mid January and the pain has been coming back in the past few weeks. Makes me think that this indicates that the infection is probably coming back in my brain which in turn would cause an increase in quinolinic acid which of course would include an increase in kynurenines. Hope that makes sense.

You mentioned the guaifenesin protocol. I was on it for many years. Still take guaifenesin because it seems to help somewhat with detox issues but I don't avoid salicylates as much as I used to. It may not work at all for some people if they don't avoid salicylates. Sensitivity to salicyaltes for purposes of the guaifenesin protocol seems to vary amoung individuals.

This is what was written to the guaifenesin list that I belong to about how it works. It is all speculation because no one reallly knows. This was relayed information from someone who went to a Lyme Disease Association conference and heard this from a presenter there.

"Guai treats a feature of the bodies reaction to the infection, which is actually Adenosine Tri-Phosphate (i.e. ATP or "energy") which is blocked from exiting the mitochondria translocator protein (the energy generating part of the mitochondria wall ) because there is build up of breakdown products of the immune system attack on borrelia and other bacteria which includes the bacterial DNA, cell walls, oxidative stress products.

So basically it all get's physically in the way of energy being released and there is nowhere for the ATP produced to go. There is actually a blood test which can test for the efficiency of the mitochondria (www.biolab.co.uk) -

So therefore with FMS we have low energy and a build up of phosphate in the mitochondria present in every cell ! This build up varies in everyone and causes pain and discomfort in some more than others and so Guai has proven a useful tool more for some than others as you say. But the crux of the matter in about 90% of FMS is LYME INFECTION."

Just wondering (don't feel obligated to answer), do you have fibro? Have you ever tried the guaifenesin?

If you ever find the info on the Guaifenesin protocol and quin I'd love to see it.


Terry

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TerryK
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Seek wrote:
My doc said if I take methyl B-12 and high doses of MSM and DMG supplements, all my issues will be fine and I bypass this defect.

I'm not a doctor but from the reading I've done, this is off base. At the very least you need the active form of folic acid.

Did anyone test your homocysteine? If not, you should have that tested to make sure it is not elevated. You need to get on the right supplements in order to avoid elevated homocysteine.

Here is a good explanation of your mutation but there are others out there.
http://tinyurl.com/mce95d

This is only part of what he has on the page so please go to the link and read all the info about this mutation. Click on the link titled "MTHFR C677T: 5,10-Methylenetetrahydrofolate Reductase (� 5-Methyl-Folate" on the page to read the rest about this mutation.

"The MTHFR C677T defect is easy to understand and even easier to treat, but the consequence of the MTHFR abnormality in kids appears to be profound, such that the parents of Autistic kids add a few more vowels to MTHFR in naming it.

Dietary folic acid, which usually is not in short supply, is readily converted in to one of the active forms of folic acid, known as tetrahydrofolate, or THF.

MTHFR converts THF in to 5-methyl THF, more commonly referred to as 5-methyl folate. MTR (methionine synthase) then combines 5-methyl folate with homocysteine to form methionine. Individuals who are (+/+) for MTHFR C677T (10% of the population, including me) have a great deal of trouble using dietary folic acid to detoxify homocysteine, as we cannot efficiently convert dietary folic acid into its 5-methyl folate form.

Elevated homocysteine leads to free radical stress, vascular plaque formation, abnormal clotting, and an increased risk for cardiovascular and neurologic disease - yikes!

If you are (+/+) or (+/-) for MTHFR (another 20% of the population), supplementation with folic acid is not the answer - it can't help you. However, low dose 5-methyl folate supplementation will bypass this defect with 100% efficacy. If you have a MTHFR C677T defect, we need to provide you with 5-methyl folate."

---------------------------------------------------------------------------------------------------------------------------------------------------------------

Personally, I don't think you have to treat Bb differently you just need to get the proper supplements to work around this mutation. I have that mutation and many more that affect detox and I continue to treat the same as anyone else. It just might be harder on some of us than others. So much would depend on your other mutations as to how problematic your detox is. I do think you might have a problem with detox based on this but I have no idea how significant it would be. You would need a lot more info than just one SNP to determine that.

MSM could make sulfur and ammonia much worse if you have a sulfur problem and methyl b12 could be a problem if you have a mutation with COMT. It is hard to know if any of these supplements are causing you problems. The one I would be most worried about is MSM. Do you think you have any problems with sulfur?

Here is what Yasko recommends for that mutation.

MTHFR C677T +/-
_ 1/4 Folapro
_ 1/4 Intrinsic B12/Folate
_ 1/2 to 1 Nucleotide mix daily (Nucleotide Immune Support)
_ 1-2 PS/PE/PC (Phosphatidyl Serine Complex )
_ 1 Hydroxy-Cobalamin B12
_ 1 Adenosyl B12 (Dibencozide) daily
_ 1/2 Vitamin E Succinate
_ B12 patch
_ Oral Hydroxy-Cobalamin B12 Spray (GET-B12)
_ Oral Hydroxy-Cobalamin Liquid Drops ( Hydroxo-12 )
_ Neurological Health Formula (General Vitamin HHC )or equivalent
After 8 weeks support, add 1/8 Actifolate and 1/8 Folic acid

Those are products from her website.
Terry

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Dawn in VA
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Terry, you are a river of info!

You said:
Molybdenum sure helped my husband get off asthma meds.

This is very interesting. I have never heard about the correlation before. If you don't mind, can I ask what dosage was recommended?

The brand name of suppositories I use is called Xeneplex. I've always had to order it online- it's patented and I've never found a compounding pharmacy willing to tackle it. Many places sell it and lots offer free shipping.

I actually just ordered some yesterday, this time from promolife.com. I've never ordered from them before, but was enticed by their offer of $10 off next purchase of $100 or more. I can't vouch for them yet, but they seem OK.

I've poked around for the cheapest price, but $89 for 10 supp's is the going rate regardless of where you get them from (recommendation is to use one every 3 days, so a month's supply)- pretty pricey, but this is one thing I try to always budget out for.

I think you're spot on about trying the simplified protocol. I was thinking the very same thing and, whew, confirmation that I'm not nuts is always nice. Just spent a whoppin' $600 for an emergency vet visit for my pup last week, so $ for the full testing is "definitely indefinite" at this point.

No, I don't *think* I have FM. I have some sx's of it, but not the typical FM trigger points- the ones that make patients yelp- in other areas, though- I think Lyme and skeletal issues.

I've been on guaif for bronchitis off and on for many years, but never on a specified "protocol".

I have an appt with my LLMD this week and am going to ask about the IM ceftriaxone. Perhaps IM zith, too. Orals are not doing the job for me right now and I am not able to get rid of the herxing components as well as before.

I am relapsing and am in need of something more BBB accessible. I loved my IV rocephin in '06, but did not appreciate the blood clots. Yah, not so much...

Terry, where would one get the kynurenine testing done? Can you get it done through the run-of-the-mill labs?

I have a couple of other things to add, but will send you a PM. More loading of your inbox! I will try to avoid blabbing this time, but offer no guarantee. ;-)

Take care, and take it easy.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Hoosiers51
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TerryK,

If people with the mutation need that 5-methyl folate, why are they only taking 1/4 of each of the first two, which I believe contain 5-methyl folate?

Why aren't they taking one or two pills of it at least? I'm not asking you in an argumenative way, just asking genuinely because I don't understand.

I know someone who has that mutation, and her MD's had her on much higher doses of those first two supplements. Then she switched to another brand, I think.

Also, are methyl B12 shots okay for people with this mutation? Thanks, if you have time to answer... [Smile]

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Dawn in VA
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PS I tried the acetyl glut., one bottle's worth, and did not find it of any help. Just personally, though.

--------------------
(The ole disclaimer: I'm not a doctor.)

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TerryK
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Hi Hoosiers
I always have time for you. [Smile]

The low doses are recommended by Yasko. She treats autistic children so perhaps they are lower than needed for some adults?

That said, my own observation is that the dosage needs don't seem to depend on weight. I know someone who is a big person who cannot take even the 1/4 of each without starting a huge detox reaction. She has to grind it all up and put just a little bit on her little finger.

As I recall, Yasko say's never go higher. Personally I take 1 full folapro and 1/2 intrinsi. I just started that a few weeks ago and I seem to do OK with it so far.

When I first started I was advised by someone (not my LLMD) to take 2 of the intrinsi per day. I felt great the first 2 weeks and then crashed really hard. Felt like I was walking around in a vat of molasses.

It is the COMT that causes a problem in taking supplements with methyl groups. The MTHFR mutation alone is fine using methyl b12 as far as I know.

Rich, the creator of the simplified protocol has concerns about methyl b12 for different reasons. He fears it might move heavy metals into the brain. I have no idea if that is a valid concern.

Here is some info I posted about that in another thread:

I don't know if it is true. It is actually METHYL b12 that Dr. Rich Van Konynenburg (not an MD) is concerned about. I think he also has said that mercury blocks b12 and higher doses of b12 are needed in people who have a large mercury load. There are many forms of b12 - several are recommended in the simplified protocol.

This is some of his explanation of the simplified protocol that talks about the methyl b12 and mercury concern

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1330540
Perque B12--This is sublingual hydroxocobalamin. The dosage is fairly large, in order to overcome the blocking of B12 by toxins such as mercury in CFS. As I mentioned above, B12 is needed to stimulate the activity of methionine synthase.

Methylcobalamin is actually the form needed, but some people cannot tolerate supplementing it for genetic reasons, and I'm also concerned that people with high body burdens of mercuric mercury could move mercury into the brain if they take too much methylcobalamin.

Methylcobalamin is the only substance in biological systems that is known to be able to methylate mercury. (Note that methylcobalamin is the substance used by bacteria to perform methylation on environmental mercury, and the resulting methylmercury is concentrated in the food chain up to the large predatory fish and enters the human diet.)

Methylmercury can readily cross the blood-brain barrier. Methylation of mercury by methylcobalamin has been reported in the literature to occur within the bodies of guinea pigs in laboratory experiments. Perque B12 is sublingual to compensate for poor B12 absorption in the gut of many people.


-----------------------------------------------------

You may want to change to another form of B12 if you think you have a high mercury load. You might find more about this from different sources if you do more research.

Terry

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Dawn in VA
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Terry's right about methylmercury. Adding a methyl group to mercury allows it to pass through the BBB.

I did avoid taking it when I was getting some of my amalgams (metal fillings) removed for that very reason.
--------
Terry, have you heard of supplementing with adenosylcobalamin directly?

Here's a snippet from
http://me-cfsmethylation.com/viewtopic.php?f=3&t=121:

A recently published paper in vitamin B12 research reports the finding that in a
person who does not have a mutation in the cobalamin processing enzyme cblC

(also called the MMMACHC protein), the first thing that happens to whichever
form of B12 enters a cell is that its beta ligand is removed. That is, the

methyl-, adenosyl-, aquo-, hydroxo- or cyano part is removed from the molecule.
The cobalamin is also chemically reduced from Co(III) to Co(II) if it started
out as cyanocobalamin.

This same cblC enzyme has been found to remove all the different ligands, but it is not yet known whether cobalamin is reduced to the
Co(II) oxidation state at this point for every starting form.

After this, some of the cobalamin is escorted into the mitochondria, and some
remains in the cytosol of the cell.

The part that is escorted into the
mitochondria is converted to adenosylcobalamin, and acts to convert

methylmalonyl CoA into succinyl CoA, to feed certain amino acids and other
substances into the Krebs cycle to be used as fuel.

Drug facts:
http://www.development-labs.com/products.php?product=26&id=2

[ 08-28-2009, 02:28 AM: Message edited by: Dawn in VA ]

--------------------
(The ole disclaimer: I'm not a doctor.)

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TerryK
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Dawn wrote:
I have never heard about the correlation before. If you don't mind, can I ask what dosage was recommended?

Gosh, this was many years ago that I read about molybdenum helping people with asthma. We use muscle testing to find the correct dose but there was probably a recommendation. Unfortunately I don't remember what it was.

He started out with 250 mcg 2X per day and now takes it 1X per day.

The connection with asthma and sulfur seems to be sulfite sensitivity causing asthma. Moly helps with the sulfur so it helps with asthma. There may be studies out there, I haven't looked for a long time.

Basically, I read about it and because his asthma was so bad even with 3 prescription meds we decided to give it a try. He takes both selenium and moly for his asthma but I don't have the original material I read about that. Sorry.

Here is something from the Cleveland Clinic about sulfites and asthma:
http://tinyurl.com/dgb6vk
"Sulfites have been implicated as a cause of asthma symptoms that may range from mild wheezing to potentially life-threatening asthmatic reaction. It is also a rare cause of anaphylaxis (generalized allergic reaction) in people who have become allergic to sulfites."

Thanks for your info on glutathione. I know others who have gotten no benefit from acetylglutathione but it does help me with energy. It's possible the suppositories would help more. Worth a try.

Glad to hear you don't have FM.

Sorry to hear you are having a relapse. I think some doctors don't like to give IM ceftriaxone but it really helped me. Seems like a number of us get big lumps at the site of the shots. Mine eventually got so bad I had to stop the shots. I don't think everyone has that problem though.

You probably already know this but many here have used IM bicillin with great success so if your doctor doesn't want to do IM ceftriaxone, maybe consider asking about bicillin?

I don't know if you can get kynurenine testing done at run of the mill labs. My LLMD did mine through metamatrix. They did the whole tryptophan pathway. The result was disordered tryptophan metabolism.

You could do a search on their site.
www.metametrix.com

You might be able to get something that indirectly measures it such as an organic acid test? I don't know if that would do but you might look into it.

Here is something interesting from their site about quin etc.
http://www.metametrix.com/PDFs/Quinolinate-Article.pdf

Dawn asked:
Terry, have you heard of supplementing with adenosylcobalamin directly?

Yes, dibencozide is adenosyl B12. I take one of those per day. It has over 8 mg in 1 tablet.

It's listed under her recommended supplements for MTHFR C677T. I don't see methylcobalamin listed there but I'm not sure why.

Thanks for more info on the methylcobalamin and mercury. [Smile]

Terry

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