Category Archives: Tests and Results

Change, Change and more Change

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Well, they say taking a long trip can change your life or give you a new perspective…. that’s what’s happened.  I found a 55+ apartment to move to. I did the thing I was most afraid to do.  I couldn’t imagine how I could move while feeling the exhaustion of this disease, but my friends and their friends came to my aid and made sure it got done as quickly and easily as possible.  Absolutely wonderful, kind, amazing people.

I want to really focus on getting my health better and that involves keeping stress as low as possible, focusing on what I can do, learning better how to be kind to myself and put improving my health first.  Maybe it wont change anything, maybe it’ll change everything but I really felt a strong push to make this move.  We’ll see.

My longer term goal is to slowly improve, get back on my mountain bike, enjoy nature, do and teach yoga and Qigong and start a support group for others in my area that are dealing with chronic illness.  Oh yes, and paint…..my new passion, which, by the way I wouldn’t have discovered had I not been ill and had my best friend encouraging me to continue.  There’s always a way to be thankful for whatever situation life puts you in.

Peace, Love and Joy!

 

Adenosyl and Methyl B-12 Oil for Chronic Fatigue Syndrome

Still hanging around, SLOWLY improving….slow as a snail trying to cross the road trying not to get crushed along the way.  I know, I’m sounding frustrated, but those of you who are experiencing it yourselves understand.  On the positive side I actually went hiking the other day on one of my favorite trails here, through a bamboo forest, picking fresh thimble berries along a stream, ending at a beautiful waterfall.  This was about an hour hike…not real strenuous, but I did it.  I actually had windows of time that I felt normal again.  I’m so thankful for these days…they keep me going.20150207_14080520150206_142546

I’ve been told by some that it can take a full 2 years to recover from chronic Epstein Barr Syndrome, adrenal fatigue and/or chronic fatigue syndrome.  I know my body wants to heal and it’s capable of healing….it’s just so hard to stay positive sometimes.  I’ve been taking qigong and meditation classes that are great and I know are helpful in one way or another. There was a doctor in my meditation class that talked to me after class.  He said, “You know there isn’t any amount of meditation that’s going to help you.  He basically said there really isn’t anything out there that he knows of that has helped people with my problems…then he paused and said except for Tibetan medicine and he named a medicine they use that has helped people.  I thought it sounded like another thing that I’ll spend money on that doesn’t work…then again, in the back of my mind I think I might ask him again for the name and do some research.

So, what I’m doing right now is b-12 oils.  I was noticing that when I took my sublingual methyl cobalamin B-12 in the morning I often felt worse and it seemed weird to me…..so I got on-line to see if other people had a similar problem and yes there are others with the same reactions, probably due to genetic mutations.  One lady referred to this site B12 Oils.  She said it wasn’t a great site, but if you have questions there is a guy, Greg, who is a biochemist, that is incredibly helpful and wow, was she right.

He asked me for my genetic data from 23 and me and went even a step further than the other biochemist I have helping me.  He did all this free of charge, by the way.  This is what he told me, “Just looking at the SNPs with double mutations, the FUT which is slightly over-expressed in CFS, and may explain some susceptibility to infection.  GAD, the enzyme is involved in making GABA, so reduced activity will mean that there is less GABA and so lower ability to dampen down over excited neurons.  BHMT will reduce your ability to use betaine (from choline or phosphorylcholine) for a source of methyl groups.  It has been stated that up to 40% of your SAM synthesis comes via this route  If this is the case you will be “stressed” to make methyl groups.  PEMT means that it is hard to convert phosphatidylethanlamine to phosphatidylcholine. This may mean that you would do well on lecithin, or eggs.  SOD is not very well explained, but it is supposed to be active in reducing oxidative stress.  This will be reduced.  MTHFR and MTRR and MAO all need riboflavin (or at least FAD) as does NOS, so if you are deficient in B2 your enzymes will work much, much lower.  If your metabolism shows signs of riboflavin deficiency you will also have a compromised immune system and multiple food sensitivities to histamines and tyramine in food.  Prolonged B2 deficiency eventually leads to B12 deficiency in otherwise normal individuals.” WHEWWW!  I’ll be getting retested on my thyroid and other basic tests in a week so I’m hoping to include one for riboflavin.  In the meantime Greg also suggested, if I can afford it, a lab called OAT (organic acids test)  He said this test is very helpful in pinpointing further where I’m having problems.  I checked with my insurance and it looks like it might be covered but I have to get my doctor to send the reasons why I need it to Blue Cross.  He agreed, so I’m hoping to get this done in the next month or two.  Here’s the site for the lab that does this as well as many other helpful tests, for anything from ADHD, autism and autoimmune chronic diseases,  Great Plains Lab.

From Tony Robbins book, Money, Master the Game, “We all get what we tolerate so stop tolerating excuses within yourself, limiting beliefs of the past, or half-assed or fearful states.  Use your body as a tool to snap yourself into a place of sheer will, determination and commitment.”

 

Methyl folate Supplements

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Happy New Year everyone!  Best wishes for good health, moments of laughter and joy and much love.

  This journey is, evidently, a long one.  They say it’s gradual, that you notice a good day now and then, until one day you realize there are more good days than bad and you’re doing things you haven’t been able to do in a long time.  It’s been over a year of “ill health”, complete exhaustion, chronic Epstein Barr Virus and whatever unknowns might still be undiscovered…..and yes, I can say I’m having good days….sometimes really good days.  I’ve been able to swim in the ocean, hike short distances and feel more like a functional human being.  I still have scary bad days too, but try to remind myself that it’s only temporary and a good day is on its way.

Currently I’m taking 200 mcg of methyl folate with 50 mg of niacin.  When I first tried methylfolate I increased daily until I reached 800 mcg.  I felt much worse with symptoms of increased exhaustion, anxiety, insomnia even though I was also taking 100 mg of niacin to help with the side effects.  So, Steve Ottersberg, the biochemist I’m working with, told me to go back down to 200 mcg for a month and then recheck my sulfur levels again or get another homosysteine test and see how I feel.  I’m almost at the one month timeframe and don’t feel much different at this point.  Some good days, some bad.  I’ll see what the tests show and how to proceed.  I’m so thankful for the good days and am learning new things on the bad days. When I’m unable to be active I found I enjoy doing jigsaw puzzles (kind of like meditation), or doing a watercolor project.  Other days I can take walks or go to Qui Gong class.  Life is good.

From Michael Singer’s book, The Untethered Soul, Learn to stop resisting reality, and what used to look like stressful problems will begin to look like the stepping-stones of your spiritual journey.

Other Genetic Mutations and 23 and Me Data

Where has Kathy Ireland been this summer?2014-09-26 13.32.462014-07-25 15.20.19

2014-10-26 11.15.48 Well, in a few words, rafting on the Animas, biking along the river, train ride to Silverton, Braveheart women, new friends, Utah family, wonderful Grandson time, Portland Farmer’s Markets, movies, amazing restaurants, jigsaw puzzles and new seaside friends….and finally back to Maui!

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That was the positive stuff of my summer…now on to the health issues.

In my last post I mentioned that I found I have a MTHFR gene mutation and active chronic Epstein Barr virus.  So, what next.  Well, as I was researching MTHFR I realized it’s important to find out what other mutations you have to know exactly how to proceed.  So I searched for people knowledgeable with analyzing gene mutations and a biochemist popped up right where I was living in Durango, CO, Steve Ottersberg, who is working through the Namaste Integrative Health Center.  Steve said before I do anything else I needed to request testing through 23 and Me.  For $99 they will send you the DNA test kit, you spit in the tube and send it back, they will then notify you when the data is ready.  FDA has requested that 23 and me provide proof that their data analysis is correct, so until that has been completed you can go through Genetic Genie, who, for a donation of $10, will put the raw data from 23 and me and analyze it and provide you with a report showing you all your methylation gene mutations in a simple easy to read format.

Sounds complicated but it was actually very easy.  It took me about 4 weeks to get the results. I did this and provided the reports to biochemist, Steve.  Steve then compiled all the data into a flow chart and assessment plan and took 2 hours explaining how each works and what I need to do to assist them…..whewwww!

So, that’s where I am.  Lot’s of information.  I know you’re  probably thinking….well, a lot of people probably have mutations and they’re fine…this is a bunch of hog wash.  Well, that’s true, people have mutations and it doesn’t affect them, but if you let your immune system get low, or you have Hashimoto’s Disease like I do, or you get a nasty infection, in my case Epstein Barr Virus, that lowers your defenses even further, it activates these mutations to the point they do become a problem.  Also, you can have just one mutation from one parent, which still allows things to work, or you can have a mutation from both parents, which makes it much more difficult.

So, I’m working on it, but it could still be a long road ahead.  I’m writing this because if you feel you’ve tried everything, you have a perfect diet, you exercise, you meditate, connect with people, worked on healing your gut, liver, immune system and nothing seems to work, you may want to look at infections, viruses, and mutations.

I’m currently spending the next 2 weeks on a low sulfur diet to reset the regulatory mechanism in methylation pathways.  The goal is to relieve the stress caused by excess sulfur metabolites.  This helps to reboot your methylation pathways, helping your body to absorb nutrients better and detox toxins much more efficiently.  This can make a big difference in your energy level, your moods, and your body’s ability to handle severe and chronic disease.

After this I will start taking 5-methylfolate slowly and increase over time.  I really think this is going to help because I was using a cream with just a little methylfolate in it and felt more energy.

From Eckhart Tolle’s book, The Power of Now, “If you cannot accept what is outside, then accept what is inside.  Do not resist pain.  Allow it to be there.  Surrender to the grief, despair, fear, loneliness, witness it without labeling it mentally.  Embrace it.  Then see how the miracle of surrender transmutes deep suffering into deep peace.”

MTHFR Genetic Mutations and Epstein Barr Virus

It’s been a long time since my last post.  I’ve struggled with convincing my current functional doctor to move on and start testing for other things because I’ve been doing all his protocols for the last four months and still am not feeling better.  Finally got tested through Labcorp for MTHFR gene mutations and Epstein Barr, which I tested positive for both.  I also tested for lyme disease, rheumatoid arthritis, and anti-nuclear antibodies, which were all negative.

So, a little about MTHFR mutations.  Methylenetetrahydrofolate (MTHFR) is a key enzyme in the folate pathway and is responsible for the metabolism of homosysteine.  There are two common mutations, C677T and A1298C.  I have both.  If you have just one you can still function, methylate folate, at 70%, but when you have both mutations, it cuts it down to 20%, which is more difficult to deal with.  This could very well explain my exhaustion but add to that a raging case of Epstein Barr Virus (positive is anything greater than 21.9, mine was 600) and I’m one pooped puppy. 

Next step with my doctor is for me to take three different products containing methylate folate as well as other supportive supplements.  I started doing research and decided this might not be the best thing to do, see http://MTHFR.NET/.  I went to a nurse that I’m seeing here in Durango and asked her if she was experienced in dealing with MTHFR, she recommended another clinic here who deals specifically with this.  They have three naturopath doctors and a biochemist on staff.  He said it could be detrimental to treat without checking first for other genetic mutations.  He asked that I order a 23andme kit for $99 which he can take the data and interpret for me.  This is also what the MTHFR. NET site recommends.  So, I sent my kit in today and will wait 4 weeks or so for the results. 

I’m hanging in there but realize now more than ever that controlling my stress response and not letting things get to me is more important than ever.  I love this quote from a Six Feet Under episode, “Why are you hanging onto your pain like it means something, it doesn’t mean shi*t.  Let it go.”  Find things to be grateful for and on the bad days just realize it won’t always be that way.  Much love!

Nocturnal Pulse Oximetry and New Hormones

This wonderful afternoon started 3 years ago with a Craigslist ad to rent Bill’s solar adobe home in New Mexico.  Mary Kaye from New York answered my ad, but even though it didn’t work out, Mary Kaye and I stayed in touch over Facebook with a shared compassion for photography, nature, kids, dogs and adventure.  Mary Kaye and her husband Dave were traveling through Colorado to spend a couple nights at this wonderful fire tower called Jersey Jim’s that’s rented out for $40 a night.  What an amazing experience.  The sun was behind the clouds making it a little chilly as Bill and I climbed the steps to the top.  When we stepped inside it was warm, serene and comforting with expansive views from every direction.  There was a bed in one corner, a stove and fridge with the fire finder compass wheel in the center of the room.  They had hummingbird feeders on all sides and as we walked around the outside the hummingbirds dive bombed me in their attempts to get their turn at the feeder.  Mary Kaye serenaded us with her fiddle playing from the ground.  Perfect afternoon….we really didn’t want to leave.

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Jersey Jim's Fire Lookout near Mancos, CO

Jersey Jim’s Fire Lookout near Mancos, CO

View from Jersey Jim's Fire Lookout

View from Jersey Jim’s Fire Lookout

Jersey Jim's Fire Lookout

Jersey Jim’s Fire Lookout

 

Mary Kaye playing the fiddle

Mary Kaye playing the fiddle

I wanted to get established with a doctor here in Durango and found a Integrative Medicine Clinic with a Nurse Practitioner, Renae Blanton, who was wonderful.  I gave her all my recent lab results and she had me do a nocturnal pulse oximetry test due to my red blood cell count being elevated.  It was very easy, just a small machine the size of a phone with a wire that attaches to your finger which measures your oxygen level as you sleep.  I haven’t received the results yet but we’ll see.  She said the amount of female hormones I was on was very miniscule and gave me progesterone pills 100 mg (I was only taking 15 mg) and I’ve ordered a cream from a formulary pharmacy for the BI-EST (was .2 mg) now 6 mg, Testosterone (was .5) now 10 mg.  The first night I took the progesterone I slept great and woke up feeling like a new person; energy, mood and otherwise.  Unfortunately the next day and those following were back to the usual exhaustion, achy muscles and joints.  Oh well!

During my phone consult with Dr. Scott he noticed that I was eating sweet potatoes for a snack with no protein. He said it was very important to eat even just a small amount of protein with it.  I asked for suggestions for protein that aren’t meat because I’m eating so much meat right now and he said he didn’t have any, but once I’ve added nuts back in it can be as simple as having apple slices with almond butter.  Currently I’ve been eating baked chicken, ground lamb, ground turkey and organic beef hot dogs…..and of course lots of veggies in the way of steamed broccoli, carrots, zucchini and mixed greens salads and smoothies with beets, ginger, kale with pears, blueberries and strawberries.  I’m loving it!   I asked him when I start the next phase of the diet and ClearVite powder and he said first I have to do a 3 day fast drinking only water with lemon and lime juice and Grade B maple syrup every 15 minutes.  Urggg!!  I said I was worried about losing more weight and he said he didn’t think I would but if I do then I can stop and move on to the next phase.  The purpose of the fast is to stabilize blood sugar and the purpose of the ClearVite is to cleanse toxins from your body.  So here I go.  I’m going to start the fast Monday, the ClearVite on Thursday and keep on moving forward.

Try this next time you feel like you’re waiting, (from the book “The Power of Now”), “Give up waiting as a state of mind.  When you catch yourself slipping into waiting…snap out of it.  Come into the present moment,  just be, and enjoy being.  If you are present, there is never any need for you to wait for anything.  So next time someone says, “Sorry to keep you waiting”, say “That’s alright, I wasn’t waiting, I was just standing here enjoying myself…IN JOY IN MY SELF

 

RepairVite Program

I’ve been on the RepairVite Program for 2 weeks as of today.  Basically it’s a regime designed to support intestinal health by supplementing with enzymes and probiotics and following a diet to remove any possible inflammatory foods.  This means I can eat only organic meat (except pork and high mercury fish), vegetables (except nightshades; potatoes, tomatoes, eggplant) and most fruit except high glycemic ones like bananas.  I’m adapting and not feeling too deprived.  I tried a new recipe yesterday, coconut curry chicken vegetable soup.  Pretty darn good I’d say, but I still like the fish soup better.  I lost 5 lbs, which is not good as I’m already very thin (105 lbs).  Dr. Scott said if I lose too much I could possibly add some brown rice to my diet, but for now he’s not concerned.  My energy level is a little better.  I’m able to ride my bike a little further.  I tried the tai chi class today and met a couple nice ladies and exchanged phone numbers.  One of them mentioned that her church also has a lot of activities which sounds like fun.  Healing comes with balance in all areas of your life, so spirituality, friendships, doing things you enjoy are all part of it.  I also went swimming in the recreation center pool….10 minutes slow easy breast stroke then 10 minutes relaxing in the Jacuzzi….nice!

This week Dr. Scott went over my saliva lab results for the following hormones:

TTF (Free Testosterone, E1 (Estrone), E2 (Estradiol), E3 (Estriol), P1 (Progesterone), FSH (Follicle Stimulating Hormone and LH (Luteinizing Hormone)

The tests showed that my Estrone was depressed (mine was 13 should be between 26 – 64) and my Follicle Stimulating Hormone was elevated (mine was 611 should be 90 – 500)

Dr. Scott explained that FSH is secreted from the pituitary gland and regulates the production of estrogen and progesterone.  The hormone that I’m low in is E1 (estrone) which is derived mostly from the adrenal.  He said once I start taking DHEA and later pregnenalone this should help balance these hormones.  There were also tests for AND (Androstenedione) and DHT (Dihydrotestosterone)….mine were both low (AND was 53 should be 75 – 124 and DHT was 15 should be 15 – 75).  Interesting that in females, the outer part of the adrenal glands (cortex) and the ovaries release Androstenedione where it produces half of all testosterone and almost all the body’s estrone.  The hypothalamus and pituitary gland are known to be important in the control of Androstenedione secretion from the ovaries, adrenal cortex and testes in men.  So, I guess, if my adrenal is compromised it makes sense that it’s affecting these hormones.  That’s it for now.  I’ve included the lab notes below, if you’re interested.  Otherwise, I’ll be checking in next week.  Breathe, be present, find joy!

The lab notes show that my hormone values are in Zone 7 – Female Hormone Deficit.  Zone 7 represents a normal testosterone level coupled with deficient progesterone and estrogen levels.  This leads to a relative hyperandrogenic state, i.e. male hormone dominance.  The suboptimal estrogen and progesterone activity is usually associated with several clinical findings and symptoms:

  •  Atrophic changes in bone, skin, vaginal epithelium and breast tissue.
  •  Nervous System (CNS) dysfunction which includes cognitive changes, anxiety, panic    attacks, insomnia and depression with mood swings.
  • Somatic dysregulation in body temperature and vascular flow to skin and brain manifested as hot flushes, excessive perspiration and headaches/migraines.
  • Fertility related problems.

Typical action plan:

  1. Start with moderate progesterone or pregnenolone augmentation.
  2. Retest in 4 – 6 weeks.
  3. Adjust progesterone dose.
  4. Introduce estrogen when applicable.  Re-test 8 weeks later and then fine tune the doses.
  5. Follow up testing recommended annually.

I was also in Zone 7 for Estrogen – Pro-Atrophic, demonstrates low estrogenic activity coupled with normal progesterone levels.  The suboptimal estrogen activity is usually associated with several clinical findings and symptoms: (same as above) and said:

  1. Consider estrogen augmentation only if androgen levels (DHEA and Testosterone) are normal…my DHEA is low.
  2. Consider estrogen and DHEA augmentation in androgen deficiency (DHEA & Testosterone).
  3. Retest hormone levels in 6 – 8 weeks.