posted
Wondering if any one as done an ALCAT test (food allergy test? https://www.alcat.com/
Or if they have worked with a nutritionist to address methyl cycle mutations (e.g MTHFR)
As I jump into year 4 of actively trying to get rid of Lyme, it is clear to me that there are so many things that could be contributing to my very slow or lack of response to treatment.
Key amongst these are diet and how we process/absorb the things we eat or exposed to.
My recent 23andMe data, after running it through the genetic genie website, gave great insight to the larger set of mutations that I have in my methyl cycle pathway and my detox pathway.
To me it is pretty clear that I need to look at my diet as one component to work through the above perhaps.
Some examples:
- after researching methyl cycle defects this past week or two, I tested my urine sulfate level and it is off the charts at >1600 (normal should be >400 IIRC) - which fits perfectly the mutation pattern that I have - I read that it is recommended that I eliminate animal meat, legumes, etc. in my diet and go full vegetarian to reduce those sulfate levels (not an easy thing for a life long meat and potatoes person)
- I clearly need B12 supplementation due to some mutations, but other mutations make it a challenge to do this properly.
It makes a mess in my mind trying to figure this out and I would be interested in knowing if anyone is talking to a nutritionist to work through any genetic information that they have received (methyl pathway or other).
Also interested if anyone has done an ALCAT test and if it has made a difference for them - I have a few non-Lyme friends who have done this and say it has made a bid difference in their life.
Sorry for the long post BUT thank you for any information you can share.
Ken
Posts: 118 | From New England | Registered: Apr 2013
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Sounds like you and I may have some of the same SNP's. I'm assuming you may have the CBS gene since you are high in sulfur. I have that one. I take molybedenum 2 times a day and also yucca if I eat a meal high in protein. I have been able to keep my sulfur around 400 cutting out meat and other foods high in sulfur.
I have been reading Dr Amy Yasko's site for a few months and am understanding more, but still not all of it.
I spoke with someone today that can coach you through the methylation pathways, with food and supplement advise, but he was expensive and I'm really not sure how much all this comes into play with lyme since there is not much out there yet about it.
Dr Ben Lynch's site also has good info on it.
Sorry don't know anything about the Alcat, but will look at it.
Let me know if you want the name of the man I spoke to today, I'd be happy to pass it on to you.
Posts: 486 | From USA | Registered: Jan 2012
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My husband did food allergy testing, but not the ALCAT test. The test was pre-Lyme diagnosis.
Avoiding the foods he was allergic to made a difference in how he felt. His severe headaches went away.
Posts: 2244 | From USA | Registered: Aug 2011
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Birdie, yes indeed - CBS mutation (and 12 others, all heterozygous, but in combination seem to have quite an impact)
Good to hear that you could impact your sulfur levels with diet - did you notice that it had any impact on how you felt?
If you could PM me the contact info you have that would be great - good to have on hand nonetheless
Thanks!
Posts: 118 | From New England | Registered: Apr 2013
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I had delayed food allergy testing before I knew I had lyme. It wasn't called ALCAT, but it was accurate.
I benefited from doing an elimination diet to find out what symptom each sensitive food caused.
Different foods/ingredients caused different symptoms.
I found that I really needed to avoid sugar cane and high fructose corn syrup for sure. I also benefit from avoiding gluten.
I just sent my 23andme sample in, but I have been reading about MTHFR.
Dr Ben Lynch's facebook page is helpful because he does post frequently and he will post responses to other people's responses/questions to his posts.
His MTHFR.net site is very helpful. I recommend listening to his podcasts.
I think I definitely have detox pathway problems.
I never felt any benefit from a detox bath.
I had extreme elevation of liver and pancreatic enzymes and jaundice when I took a sulfa drug, Bactrim DS.
I am totally "snowed" if I ever take even 25 mg of Benadryl.
Many years ago, I tried amitriptyline for my "fibromyalgia", and even the lowest possible dose snowed me and I could barely function.
My mother and grandfather are/were sensitive to medications.
The clues just add up.
I do know that my homocysteine level is normal.
I think it would be hard to find even a nutritionist who knows much about this subject.
I wish you all the best and hope you can figure out exactly what you need to do to get the maximum health benefit.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Some long-term things are starting to make sense as well. And you are right the clues start to add up
My detox mutations make me a super slow absorber - which explains why I can't sleep if I have tea in the afternoon, and probably why my kids take 2-3 hours to break a fever after taking advil (knowing that I am homozygous so would have passed on the mutation to them)
Maybe that impacts my uptake of antibiotics - maybe not - need to figure that out.
My methyl cycle mutations may explain why taking multivitamins usually drops me to the floor in exhaustion (niacin and B6 perhaps) and why taking some forms of B12 seem to launch me into orbit.
And maybe a lack of vitamin D isn't helping either i bet.
The 23andMe testing has opened my eyes a bit more (particularly after running the data through genetic genie) to the complex nature of our health.
Best wishes and hope to you too!
Posts: 118 | From New England | Registered: Apr 2013
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My husband just mailed off his ALCAT test today. He previously did an elimination diet to search for hidden allergies, but the only food he reacted to was peanuts--which he's now eliminated. But his LLMD thought there was more going on, including hormonal issues. We'll let you know further down the road when he gets the results and finds out whether this could make a difference.
Posts: 431 | From New England | Registered: Dec 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I did something very similar to ALCAT for my daughter years back- one interesting thing: Coffee came up off the charts high!
I said to a RN who reviews the tests: I guarantee you this 4 yr. old has NEVER had a drop of coffee anything!
She said coffee is a mold - and my dd was reacting to mold- (peanuts are as well) we later did the mold protocol with LLMD when we found Lyme years later-
Many will set up a rotation diet if a lot of foods come back reactive- heal the gut that way-
On another board I frequent, MTHFR is a hot topic, and it is really helping some of the kids (info. gleaned from 23andMe)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
That's interesting, Surprise. So allergies to coffee or peanuts may really mean allergies to mold? And presumably to envoronmental molds as well as to those consumed in foods?
Posts: 431 | From New England | Registered: Dec 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Oh, I am not making a bold black and white statement!
I just thought it was fascinating, a child just turned 4 yrs. old, obviously never having coffee, tested sky high off charts intolerant,
coffee is a mold, later we find her and I have 1 gene of dreaded HL4 Shoemaker type (don't detox mold or Lyme well, supposedly this means)
we did ERMI test on house, mold inspection - 1 minor issue in garage only.
Now, what I wonder: Mold = yeast? Fungi. She and I both had major yeast issues to clean up- test was before we started all that-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
So anyways, yes, our ALCAT type test gave me the determination to start gluten free, which I tell you, was no easy road with my dd in the beginning!
I also loved my gluten! But it had to go- It was the start of our road.
Hope it is fruitful healing for all--
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
All interesting connections! We're already gluten free, sugar free, and now yeast free too. They're making much better gluten-free bread than they used to.
Posts: 431 | From New England | Registered: Dec 2011
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Evidently, coffee beans harbor mycotoxins, which are fungi.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Evidently, coffee beans harbor mycotoxins, which are fungi.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
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