posted
Just got my results back from the detoxigenomics liver enzyme test, done through Genova Diagnostics. It tests the genes available for the enzymes involved in phase one and phase two pathways of liver detoxification.
Phase one converts toxins into more viable units for the body to then excrete in phase two.
From what I understand, there are eight enzymes involved in phase one, and approximately ten drains comprised of multiple enzymes involved in phase two.
I had to do the test because I am over-the-top chemical-sensitive - can't touch fabrics without itching and hives right now, etc.
So the test found the culprits, we think. Three enzymes not working right in phase one(two too fast, one too slow), and two main ones not working in phase two.
The LLMD explained it like a bathtub filling up with too much water in phase one, and then not draining in phase two, thus making me oversensitive to any new input.
The therapy will entail working on two of the phase two drains, the glutathione pathway and the methylation pathway.
There are lots of possible medical approaches for these two problems. I'll be starting with a product called MaxGXL to treat the glutathione one and a hydroxy VitB12 product for the methylation one.
I wanted to describe this for anyone else who's multiple chemical sensitive. The doctor said my results are fairly normal for people with mcs.
It can be a big help for you and your doctor to find out what your body can do and not do, genetically.
[ 02-04-2009, 01:34 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks for sharing and I am glad to hear you have some answers finally.
The Glutathione REALLY helped me.. so I am hoping you will see good results with it too.
posted
Thx, TC - nice to see you back! Taking a break from babysitting responsibilities?
I don't know if you have chemical sensitivities. If you do, did you notice any difference after doing the glutathione? Or did you just feel better in general?
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
this is great news! Let me ask you , was this a blood test or was it done through urine?
How was this done?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Robin,
Thanks for sharing details. For others to read more - until you come back with the links you recommend - here's that main web link:
Along the same line, but still very different, are tests for porphyria which are not as easily done.
Still, it can help to research the specific meds - or foods - or environmental stuff that clobbers those with C P-450 detox problems so that the total load may be lightened, in case this is also part of the problem.
Other than using beta carotene capsules, though, they don't go into liver support, etc. Too bad.
As well as what Robin mentioned about to help the liver work better, one herb, especially, can help the C P-450 process: schizandra - more about that at this thread:
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Comprehensive Detoxification Profile return to profile page DESCRIPTION: This test analyzes saliva, blood, and urine after challenge doses of caffeine, aspirin, and acetaminophen, to assess Phase I and Phase II functional capacity of the liver to convert and clear toxic substances from the body. This profile includes markers for oxidative stress and important antioxidants. ANALYTE LIST:
Acetaminophen mercapturateAcetaminophen sulfateAcetaminophen glucuronideCatecholSalicyluric acid2,3 DHBAGlutathione, PeroxidaseCysteine, serumAcetaminophen derivativesCaffeine ClearanceGlutathioneLipid peroxides, urineSalicylate derivativesSulfate, serumSuperoxide dismutase (SOD) Turn Around Time: 7 Days Specimen Requirements: 15ml aliquot of 10 hour urine Referenced materials:
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
the only thing that scares me about this test is taking the caffeine in tablet form. I dont want to have a panic attack!
That being said I might just start getting used to it by taking caffeine tablets and see how I do!
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
Hi - the detoxigenomics tests is a bloodtest, done with one of their test kits. There was no challenge dose of anything - just did the blood draw.
My doctor said caffeine adversely affects phase two detox. He would like me to find an adrenal substitute, and has suggested trying adrenogen (from Metagenics) or isocort (Bezwecken).
I'm assuming the C P-450 test is something separate? I haven't received a copy of the test results yet to check.
It is interesting to google for the C P-450 stuff, tho - says it's a family of enzymes that metabolizes/detoxes 1000s of toxic compounds.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
you can find much more about the C P-450 stuff at the Porphyria thread.
The enzymes are deficient and not available to purchase as are some digestive or pancreatic enzymes.
It's very complex so the porphyria organizations sites are best to consult before any testing.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Well it seems from her description of the test that it tests only for the genes and not their functionality. How do they test for the function?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Looks great
Does this test also test what meds you can and can not take like the P450 Genelx Test?
Let us know Rianna
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
BUMp/ I want this test now. Im still wondering if they just test for the genes or their function or both?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
ByronSBell 2007
Unregistered
posted
I have problems similar to your test results, I have been learning that treating lyme disease is all in getting the dead stuff out. It's why people like us take a little longer to heal. It's also why we herx harder and longer too.
IP: Logged |
posted
Robin, thx for keeping us posted. Wondering-are you on abx or do they have you wait until they think your detox pathways are up to snuff? Also, do you know the name of the hydroxy B12 product they recommended?
Thx again and glad you're getting answers!
Posts: 70 | From U.S.A. | Registered: Dec 2008
| IP: Logged |
posted
Thx for the Qs, everyone. Anything else anyone wants to ask? I'll be seeing the doc on Thursday.
Tonglen, I'm on clindamycin since it's the only abx I can take, due to allergic rxns to the rest. And I will be discussing the hydroxy VitB12 situ at the Thursday appt.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I found this online....perhaps this is the "Hydroxy Vit B12":
"Hydroxycobalamin is a unique form of vitamin B12, which is more readily converted into the coenzyme forms than conventional cyanocobalamin. Hydroxycobalamin also readily binds body stores of cyanide, unlike conventional cyanocobalamin, which already includes this ion in its structure."
posted
Robin, you are such a good soul! Those of us who can't tolerate clothes gotta stick together. A thought. If there is an issue with your glutathione pathway, why not give you glu ivs initally as kind of a boost with the Max product?
Posts: 70 | From U.S.A. | Registered: Dec 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, I'll be very interested to hear how that MaxGXL product goes too! I looked it up online and read about it some.
It seems like it would be a good alternative for someone like me, who doesn't have access to glutathione IVs. I wish there were more people on Lymenet who had tried it!
I really hope this is a good start for you Robin, and it helps you get some of your sensitivities under control! Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Yes, there is a current liver functionality test offered through Genova Diagnostics, called the hepatic detoxification panel.
I looked at the Genelex one - it tests for some of the phase one enzymes, and one category of phase two (acetylation).
Unless Genelex offers more tests than these described, I'd say it's only a partial test, compared to the detoxigenomic one done by Genova Diagnostics.
Yes, the explanation papers that accompany the test show which drugs are metabolized by the compromised enzymes - either too fast or too slow. Usually too slow.
Again, the detoxigenomic liver enzyme test is a good one to do if you are multiple chemical sensitive and/or not detoxing well.
There is a fancier and more expensive test, done by Amy Yasko that will show all of the 20 enzymes involved in phase two's methylation pathway.
It's only recommended if we aren't even handling the beginning treatments for the problem.
The detoxigenomic test just shows what the whole COMT family of enzymes is doing, and the doc said that was enough in my case to show him it wasn't working well (COMT = catechol-O-methyl transferase).
For my treatment, the doc isn't going to treat the phase one pathway enzymes. Says treatments haven't looked strong enough to do so.
That's the first phase where a hydroxy group is added to toxins. If it's not happening well, it "fills up the bathtub with too much water", was the way he put it.
So we're treating the phase two enzyme pathways. There are actually about ten drain systems, he said, of which the detoxigenomic test tests for the most important four (methylation, acetylation, glutathione, and superoxide dismutase).
For the methylation one we are going to try the hydroxy VitB12 suggestion Hoosiers mentioned here, so thx for listing it!
After that, betaine, then olaloa, then b12 shots.
A compounded nasal spray from a Seattle company is also an option instead of the Vit B12 version that Hoosiers mentioned.
For the glutathione pathway I'm going to try the MaxGXL. It comes in packets, and is comprised of precursors for glutathione - google for it.
Other options: RediSorb, something called Recancostat.
Couple more interesting comments:
He's wondering whether folks with fibro symptoms have a harder time detoxing, and so might be dealing with more inflammation, ergo fibro symptoms.
Second, a phase two pathway, the superoxide dismutase one, protects against damage to nerve cells.
It's present in the cytosol (liquid part of the cell) and in the mitochondria. The explanation paper says that changes in the SOD enzyme are associated with risk for neurodegenerative disorders like ALS.
This doctor is outstanding when it comes to understanding alternative tests and treatments.
He did say that anyone wishing to consult him would have to come to SF and see him in his office.
[ 02-04-2009, 01:32 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Robin, thx you so much for doing the detailed report.
Was wondering if folks w/lyme and mcs should take lower doses of abx or pulse them (1/2 week on, 1/2 week of) to prevent overloading the liver etc. w/toxins.
Compromise between killing the infection and preventing the mcs from getting worse. Thought LymeHerx101 wrote going through herxes gave him mcs? Robin, did you have mcs before starting abx? If so, have abx made it worse?
Any one is welcome to add their thoughts!
Posts: 70 | From U.S.A. | Registered: Dec 2008
| IP: Logged |
posted
Also, if you have mcs, how do you tell the difference between a herx and a drug reaction? Thx in advance for any responses.
Posts: 70 | From U.S.A. | Registered: Dec 2008
| IP: Logged |
posted
Tonglen, I just know from my own experience I can't handle much of a substance if it's going to cause any kind of reacton, be it herx or reaction to the drug. I don't think I'm clear on the difference between the two. Is anyone?
Altho when I started clindamycin, that was a clear herx with developing overwhelming fatigue and I had to lower the dosage.
I did not have mcs before Lyme. I did develop it in the first couple years I had Lyme, as I became sensitive to cigarette smoke early on.
When I started the clindamycin, within the first week I recall that my chemical sensitivity went down. Soon I was able to stand next to a smoker. Just what we need, right? But for me, it was exciting!
So the antibiotics helped my mcs in clearing the bacterial load.
My thinking at this point is it would make sense for mcssers to get the liver test done and treat for the screwed-up pathways. If you do that, then it should be easier to handle the meds.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Wonderful information on MCS and liver detoxing. I love this site for all the knowledgeable people on here so willing to help others. Thank you Robin
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
| IP: Logged |
bettyg
Unregistered
posted
quote:Originally posted by lymeHerx001:
the only thing that scares me about this test is taking the caffeine in tablet form. I dont want to have a panic attack!
herx,
i had the one done w/caffine tablet, took it as requested and on time; IT DID NOT SHOW UP IN TEST RESULTS WHATSOEVER. drove my 2nd llmd who requested it up a wall.
she wanted to repeat it for accuracy! will that cost me again, YES, $400 !! needlesstosay, i said NO WAY JOSE!
robin, thanks for all the valuable update on mcs, and SO GLAD you found what was the matter with you to HELP you finally.
IP: Logged |
There's actually a lot of printed material that comes with the test results. Probably many of you know this next stuff anyway, but for anyone who's unclear that the following helps with detoxing, here's a list of food liver detoxers:
Vegetables and fruits, especially cruciferous vegetables (broccoli, brussel sprouts, cauliflower, watercress and cabbage), garlic, onions, soy, grapes, berries, green and black tea, and many herbs and spices like rosemary, basil, tumeric, cumin, poppy seeds, black pepper. Also hot chocolate fudge.
Avoid charbroiled meats, caffeine, smoking.
Because caffeine can interfere with both detox phases, the doc suggested I try adrenogen as a substitute, and after that, he would have me try isocort.
The adrenogen tablets consist of riboflavin, Vit B6, pantothenic acid, raw adrenal concentrate(bovine) and PABA.
Note: I added one food item to the above list that was not in the papers which I think should have been... Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Robin123 - The Genelex test is a test that needs to be run with the Genova Diagnostics, called the hepatic detoxification panel.
The Genelex comprehensive drug reaction profile does not look at your detox capabilites it looks at how you metabolise all medications/herbs/vitamins. So you have the test run and then you have an interactiove computer programme where you enter the drug/herb/vitamin and it sees if you can or can not take the drug. It actually goes further than that and it tells if you are a normal, moderate or slow metabolizer so will also let you LLMD see the correct dosage for you.
You must look at the genelex test as a TOTALLY Genova Diagnostics hepatic detoxification panel as that only looks at your bodies capability to detox, it does NOT look at what drugs/vits etc you can take.
I was told the MOST important test is firstly the Genelex test to see what drug regime you should be on and what your body can take and then also to look at your detoxing capability, therefore combining both tests together as what is the point in working on detox but not knowing what medication you body can or can not tollerate.
I know you say your doc is not working on phase 1 so much as phase 2 but if you give your body anything that is cannot metabolise in phase 1 (drug/herb or vit)or that inhibits cytochrome P450, This situation can cause substantial problems as it makes toxins potentially more damaging because they remain in the body longer before detoxification.
So again I think it is important to see what your body CAN take to treat the infections as you can not leave those untreated and then to also look at the detox pathway with that
Rianna
[ 01-31-2009, 06:52 AM: Message edited by: Rianna ]
Posts: 1172 | From UK | Registered: Jan 2007
| IP: Logged |
posted
Rianna, I got discussion pages back for each enzyme pathway that was messed up - ie, three enzymes in phase one, two enzyme pathways in phase two.
For each, I got a detailed list of the drugs (called substrates) that are metabolized by that enzyme, the inhibitors of that enzyme and the inducers (what increases that enzyme's activity).
So we can see a list of meds that are going to be possibly impacted by the poorer activity of that enzyme - either a quicker or slower reactivity depending on whether the enzyme test showed a quick or slow enzyme response.
I did not see the list of drugs metabolized by the other pathways that are ok.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Thanks for explaining Robin123,
Can you please send the EXACT NAME and WEBSITE LINK to the test that you had done
I am seeing the ND at my doctors office and want all 3 tests for her to look at.
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Does insurance cover any of this? Whats the cost, as much as IGINEX?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I am having the extensive Genelex Gene drug interaction panel run with the interactive programme and that was $1100 but i think some insurances do help/pay.
i am also having the Genova Diagnostic detoxigenomic liver enzyme panel (the extensive blood one not saliva/urine run and that is available here in the UK for �325.00 they do do cheaper less extensive ones for �125.00
posted
Hi - unfortunately, the test is not covered by insurance. It costs $400. I had help.
What is the pound/dollar ratio now?
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Oh my God. Inssurance sucks!!!!!!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
but the test does sound awesome
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
NAC makes me sick with a migrane and glutothione didnt help me
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
maybee my liver is the same as yours Robin.
Just b12 and glutothione? Im also taking molybdenum for the sulphization pathway.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by Robin123: Hi - unfortunately, the test is not covered by insurance. It costs $400. I had help.What is the pound/dollar ratio now?
� to $ is terrible right now it was $2.00 to � but since our USELESS new primeinister stepped in he has devaluated the � drastically.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I just had the Genova Labs detoxigenomic profile done through my LLMD. Results will be back in a couple of weeks. This is a new area fro him, too. I hope he'll know how to fix my sensitivity to so many abx and supplements.
Stay tuned.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/