Newbie! Taking this ride with everyone for better or worse. . .

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
Thrac92
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by Thrac92 »

In order to sleep well you should have last meal with at least 3 hours before you hit the bed. No exceptions. Do you eat late?
This is the number one rule for me at least. High insulin form food is direct related to no sleep.
Second is to have enough magnesium/potassium (food and/or supplements).
Third: do you eat enough vegetable (for magnesium & melatonin).
The melatonin you produce it at nigh with a good sleep but you can get it from vegetables as well.
Melatonin helps to sleep well. You have to get out of the loop with low melatonin.
The last thing I do and I think helps is IF (intermittent fasting), I eat only from 12PM to 6PM.
The body has a circadian cycle(s) if you mess with these you mess with your sleep.
I sleep like a rock for 6-7 hours in a row. I am a (3/4) like you close to 49 years old.

The Apo4 gene is the gene that helped us to migrate in the past (walk long distance with no food), it is the gene that give us strength when there is famine.
People with Apo4 can stay with no food longer period of time than the rest with no Apo4, but it is a pro-inflammatory gene that mess our health when we eat more than we need. At least this is what I am reading lately.
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by CoachDD »

I am finally getting around to posting my history of labs. . . would love some help to interpret. I am in the process of getting an updated Boston Heart report (as well as DUTCH Hormone Panel and Toxic Metals - Urine). Here are my numbers:

Genetic:
E3/E4
PSEN1: rs3025786 (T:T) - highlighted in red on my genetic report (?) I believe this SNP suggests a lower risk for AD (which I do not have)
rs63750526 (A246E): I question +/- impact: C;C
rs63750590 (H163R): I question +/- impact: A;A
rs63750577 (S170F): I question +/- impact: C;C
rs63750599 (L85P): I question +/- impact: T;T

Genetic Variations:
MTHFR: Compound Hetero: C677T / A1298C
MTHFD1: T:T (homo)
(I haven't dug deep - may have more)

Boston Heart Test (BT) done in 2013 - here are the results that were highlighted in yellow (@ 46 year old):
HDL Map: a-3: 25.8 (<13.5 is considered optimal) , a-4: 17.0 (<13.5 is considered optimal)
Cholesterol Balance: Beta-Sitosterol: 178 (bordering high - 180 is considered high), Campesterol: 173 (mid-range of borderline - high optimal is 150)
Lipid/Lipoprotein/Apolipoprotein Tests: ApoA-l: 173.0 (>180 is considered optimal and <140 is considered high risk)
eGFR/Non-African American: 88 (slightly below optimal: >89 is considered optimal and <60 is considered high risk)

Here are some other results that were in optimal range (again, this was in 2013) - I've included updated results, if readily available:

HbA1c: 5.2 (Jun16: 5.4)
Homocysteine: 8.7 (Jun16: 10.4, Mar18: 9.9)
Fasting Insulin: 11 (Jun16: 2.7)
Glucose: (Dec16: 86)
Triglycerides: 60 (May12: 51, Apr14: 50)
Vit D 25-OH: 66 (June16: 35, Dec16: 43, Sep17: 75, Mar18*: 36) (I assume this was TOTAL for all 3 reports)
Vit D 25-OH, D3: 36 (Mar18*) (35 Jun16)
Vit D 25-OH, D2: <4 (Mar18*) (<4 Jun16)
*Now taking 4000 iu D3/K2
TSH: 1.67 (Jun17: .28 (L), Sep17: 2.57, Nov17: 1.71) Started nature throid in Aug17
hs-CRP: 0.7 (Dec16: 0.2)

More lab results:
White Blood Cell Count: Mar18: 4.4
B12: Jun17: >2000 (H), Jun16: 761
Folate: Nov17: 933 (H) (FM ND recommended stopping Bs for now)
Ferritin: Jun16: 122, Mar18: 133
Binding Capacity Iron, Total: 94 (Jun16)
Iron Binding Capacity: 272 (Jun16)
% Saturation: 35 (Jun16)

T3 Free: Jun17: 2.2 (L), Sep17: 2.7 (borderline low), Nov17: 3.3
T3 Reverse: Jun17: 16, Sep17: 11, Nov17: 15
T4 Free: Sep17: .8 (L - bottom of range), Nov17: 1.0
Testosterone: Jun17: 32
Free Testosterone: Jun17: 2.3
Pregnenolone: Jun17: 58
Estrogen: Jun17: 682.4 (H), Sep17: 654.3 (H), Nov17: 369.9, Mar18: 507.5 (H) (FM ND has me on a estrogen reduction plan)
DHEA Sulfate: Jun17: 224 (borderline high)
Estradiol: Jun17: 305
Iodine: Jun17: 55 (borderline low), Sep17: 34 (low) (FM ND prescribed supplement drops)
Zinc: Jun17: 11.8, Nov17: 12.0
Potassium (blood): Jun17: 95, Nov17: 95
Magnesium (blood): Jun17: 5.3, Nov17: 4.6

FWIW, I am including these too:

ANA Screen, IFA: Positive
ANA Titer: 1:80 (H) (Nucleolar Pattern), 1:160 (Homogeneous Pattern) (Past lab: 1:40 Speckled Pattern Jun16)
Mitochondrial AB Titer & Screen: Negative
Actin Smooth Muscle: <20 (positive)
Complement Component C3C: Dec16: 80 (Low) (Jun16: 44)
CMC IGG: 2.74 (Jun16 - high)
CMV IGM <0.2 (Jun16 - no antibody detected)

C4a Level: 1172 (Jun16)

MCV: May12: 98, Jul16: 102.7 (H), Jun17: 101.8 (H), Sep17: 101.1 (H), Nov17: 102.1 (H), Mar18: 102.5 (H)
MCH: May12: 33, Jul16: 33.9 (H), Jun17: 34.7 (H), Sep17: 34.3 (H), Nov17: 34.8 (H), Mar18: 34.7 (H)

Lyme and co-infections: NEGATIVE (IgeneX)

TOXIC METALS: (I am in the process of testing again - stay tuned)
Lead (urine): Oct16: 69, May17: 15 (<2 is acceptable) (FM has me on chelation protocol)
Thallium: May17: 0.6 (considered high: 0.5 is end of range)
Sodium: May17: 40 (low: 2.5th percentile)
Potassium: May17: 110 (high: 97.5th percentile)
Magnesium: May17: 170 (high: 85th percentile)
Copper: May17: .047 (high: 90th percentile)
Manganese: May17: (high: 97.5th percentile)
Chromium: May17: (low: 2.5th percentile)
Vanadium: May17: (high: 99th percentile)

EBV Panel (Mar18):
EBV Viral Capsid AG (VCA) AB (IGM): <36 (negative), < or - 0.90 (Jun16 - negative)**
EBV Viral Capsid AG (VCA AB (IGG): >750.00 (High) (>21.99 is positive), 3.74 (Jun16 - high)**
EBV Nuclear AG (EBNA) AB (IGG): 502.00 (High) (>21.99 is positive), 5.00 (Jun16 - high)**
*I am currently taking supplements to treat reactivated EBV
**Ranges and results must have been updated as these do not correlate with new lab ranges
CD57, CD3, CD8, FLOW Cytometry:
CD57+/CD3- of WBC: <1 (low) (Mar18 & Jun16)
CD57+/CD3- Absolute <20 (low) (Mar18 & Jun16)
CD57+/CD3-/CD8- % Lymphs: <1 (low) (Mar18 & Jun16)
CD57+/CD3-/CD8- Absolute <20 (low) (Mar18 & Jun16)

BTW - E3/E4 was also highlighted in the 2013 BH report. . . and the only result in red. The ND that had me take this test completely ignored this one which is amazing now that I look back at it.

Any and all feedback is welcomed!

3/25/18 - Bolded stats and info added
Last edited by CoachDD on Sun Mar 25, 2018 12:43 pm, edited 2 times in total.
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by SusanJ »

So, inflammation and underlying infection like EBV will throw most everything out of whack, including homocysteine and sleep. Maybe the fact that your last homocysteine is lower than your high means you're moving the needle in the right direction on that front.

So MAO-A is the one responsible for converting tryptophan to serotonin (the precursor to melatonin). Do you have trouble falling asleep, or staying asleep? Do you feel wired but tired? Do you crave carbs at all?

As far as APP, PSEN1 and CLU, you can use the search to find conversations that we have already had about these genes.
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by CoachDD »

SusanJ - I have problems staying asleep. . . and you'll see that these numbers have been "out of whack" for almost two years! I've been gluten and grain free for 1 1/2 years, but recently started introducing some grains (lentils, brown rice). I probably crave sugar more than carbs (but do my very best to keep that under control!).

The MAO-A is A;G, but I can't recall if that's good or bad. (MAO-B is A;G as well - not sure that one is significant).

The APP and CLU gene markers are "good" on my report, I am highlighting one of the PSEN1 since this one is marked "bad" - I understand that this SNP may actually counteract or REDUCE your risk for AD (but based on my result, I do not have that protection).
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by SusanJ »

It might take some time to normalize your hormones, which should help on many fronts. And dropping the folate and B12 are smart.

Your fasting insulin is high but A1c is low. Definitely something to ask your doctor about.

If you're waking up and also craving sugar, Lynch's book suggests you have a "fast" MAOA. Two other things that he suggests for this, after addressing inflammation and infections and ruling out mold, are to try inositol to regulate serotonin and curcumin as an anti-inflammatory that helps conserve trytophan (for making serotonin). Never taken inositol but many of us here take curcumin as an anti-inflammatory. Another question for your doctor.

Many of us find there are multiple layers to regaining our health, so just keep hacking away.
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by Anna »

Here's my feedback, focusing on the items that I have personally encountered.
CoachDD wrote: EBV Panel (Mar18):
EBV Viral Capsid AG (VCA) AB (IGM): <36 (negative)
EBV Viral Capsid AG (VCA AB (IGG): >750.00 (High) (>21.99 is positive)
EBV Nuclear AG (EBNA) AB (IGG): 502.00 (High) (>21.99 is positive)
*I am currently taking supplements to treat reactivated EBV
Did your doctor also test EBV Early Antigen AB, IgG? Mine used this positive result, along with the elevated VCA IGG and EBNA IGG (and negative IGM, which means this is not a new infection) to diagnose my reactivated EBV. She said the early antigen test shows that EBV is actively replicating. I consulted with an infectious disease specialist, who said the same thing and added that the other numbers persist longer and not to expect them to have moved much when I retest in May -- that they will eventually decline, but slowly. Your IGG and EBNA numbers are quite a bit higher than mine (as of my Jan 18 labs), so I'm guessing this does mean you had a reactivation, but I'm wondering if it was for sure a RECENT reactivation.
SusanJ wrote:Genetic Variations:
MTHFR: Compound Hetero: C677T / A1298C
MTHFD1: T:T (homo)
(I haven't dug deep - may have more)
Have you run your 23andMe results through Genetic Genie? This provides more complete methylation and detox reports. I haven't done StrateGene yet, so I can't comment on that one.
CoachDD wrote:ANA Screen, IFA: Positive
ANA Titer: 1:80 (H) (Nucleolar Pattern), 1:160 (Homogeneous Pattern)
When was the 1:160 result? This is a true positive (My memory is that 1:80 is at the top of the equivocal range). Mine was also 1:160 when I was diagnosed by a rheumatologist with undifferentiated connective tissue disease (due to this, other labs, and symptoms). There is a subset of the population (I've read 5%) that has a positive ANA without symptoms. Have you had tests to further investigate this, such as anti double-stranded DNA, AntiRNP, anti-Smith, anti - Ro/SSA, and anti La/SSB? (These can help differentiate between autoimmune connective tissue diseases like lupus, Sjogren's, mixed connective tissue disease, schleroderma, etc -- mine were negative, hence the "undifferentiated.") Have you consulted with a rheumatologist? Also, active infections, like EBV, can be a trigger of autoimmunity. Do you have symptoms that seem consistent with autoimmune connective tissue disease, like painful or swollen joints, low-grade fever, dryness (mouth, eyes, etc), profound fatigue even without the EBV, etc?
CoachDD wrote:Complement Component C3C: Dec16: 80 (Low)
Coincidentally, my rheumatologist's nurse just called today to say that my C3 Complement is low (77). She said that this typically represents an overactive immune system and in my case, is probably due to an autoimmune flare, possibly triggered by the active EBV. Did you also have a C4 Complement done?

Regarding your ferritin (upper end of normal), MCV(consistently high), and MCH (consistently high) . . . I'm out of time and need to look further into this, but I'm wondering if these are all somehow related. Were you taking methylated folate during all of those tests? I think folate and B12 deficiency can cause these numbers to raise. My MCV has tended to run a little high for years, but has normalized -- not sure if this is from adding methylated folate and B12 or from donating blood . . . which brings me to ferritin. Yours is technically "normal" but it's possible a full iron study (Mine have included ferritin, iron, total iron binding capacity, % saturation, unbound iron capacity) would be helpful. It may also be worth checking to see if you have hereditary hemochromatosis (HH), which causes iron to be more readily absorbed. Hemochromatosis can also cause high MCV (not sure about MCH). There are a few genes involved, but the major one is HFE, with C282Y and/or H63D mutations. However, if you had this, it would have been flagged by a 23andMe report as well as Promethease. This is just me wondering out loud, since I am homozygous for H63D (which is the mild version of HH); it's relatively common but not on most people's radar.

Hope this helps!
~Anna
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by CoachDD »

SusanJ wrote:And dropping the folate and B12 are smart.
Your fasting insulin is high but A1c is low. Definitely something to ask your doctor about.
If you're waking up and also craving sugar, Lynch's book suggests you have a "fast" MAOA.
Thanks for your response - I question if I should drop the B12 - should I just take a different form (Adeno or Hydro?)?

That fasting insulin and A1c was in 2013 - it's interesting that my current FM ND has not run these tests in a while. I should have updated results shortly now that I have an appointment with a Bredesen Protocol trained doc next week!!

I have tried to follow Lynch's suggestions, but when I've taken the "quiz" for each of the genes he outlines in Dirty Genes, I either think I have all of them or none. . . I will look it up again - I appreciate the reminder. I don't wake up craving. . . it's during the day that I tend to gravitate to a sweet treat, so I'm considering that "craving" sugar. Dark chocolate and dried figs (with no sulfites) have been my go-to's!
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by SusanJ »

Sorry, I didn't mean that you have both waking and craving at the same time. It's that you have both symptoms.
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by TheBrain »

CoachDD wrote:I have been struggling with health issues for some time now. My major complaint is severe, chronic insomnia which prompted fatigue, lack of energy, brain fog, etc., which I believe may be directly related to methylation issues. Early on, I was treated by a family practitioner (who just wanted to give me antidepressants and sleeping pills - I only took trazodone for sleep), but I switched and have been working with a FM doctor for the last year and a half. In 2016, after a few rounds of disability, I finally left my high-stress corporate position after 25+ years in the healthcare industry (necessitated by the denial of my long-term disability). I am currently a student at FMCA (Health Coach), but do sometimes struggle to keep up and retain information. I am hopeful to get my symptoms under control and find work in this field once I am certified (tentatively set for August 2018). I've been super focused on wellness and eating "right" for some time now and follow the likes of Hyman, Axe, Jockers, Myers, Lynch, Brogan, Amen, to name a few.
Zinc: Jun17: 11.8, Nov17: 12.0 (I'm assuming this is a blood test.)
Copper: May17: .047 (high: 90th percentile) (I'm assuming this is a urine test.)
Hi CoachDD,

Have you looked into the possibility of Chronic Inflammatory Response Syndrome (CIRS)? About 80% of cases are due to mold illness. Lyme disease comes next, and there are a couple of other forms of biotoxin illness that cause CIRS.

I'm asking because some of your symptoms remind me of me (and I was recently diagnosed with mold illness, but I now believe I've had it for many years): severe, chronic insomnia; fatigue; lack of energy; brain fog; difficulty retaining information.

I'm now on an expensive sleep cocktail that is helping me sleep better, but if I have a bad night's sleep, I feel lots of physical and mental fatigue the next day. If I sleep well (or well enough), I mainly have mental fatigue the next day. However, my overall stamina is still nothing compared to what it used to be. Back in 2010, I had to go part-time at work. I finally quit in December 2012 because I couldn't keep up with the demands of my job (along with other reasons).

You might check out what Dr. Bredesen says in his book about Type 3 Alzheimer's on pp. 104–111. And I don't mean to suggest you have Alzheimer's now. However, toxicity and the chronic inflammation from CIRS can ultimately lead to Alzheimer's. However, as he notes in Table 1 on p. 110, symptoms often begin in the fifties or late forties. And BTW, he has since found that many people with CIRS are ApoE4 positive.

A clue is one's copper/zinc ratio (see pp. 106-107 in Dr. Bredesen's book). Obviously, your copper is high. As for your zinc, I don't know what the measurement for your test result is, so I can't tell. But Dr. Bredesen recommends a 1 to 1 ratio of copper to zinc, with about 100 mcg/dL each (but they would need to be measured in the blood).

For example, my last test result for copper was 133 mcg/dL, and my last test result for zinc was 78 mcg/dL. I'm supplementing with zinc and under treatment for mold illness.

Also see pp. 151–153 in Dr. Bredesen's book for CIRS testing information and targets. They aren't the full CIRS labs but more like screening labs. My health insurance covered them.

We have an enormous thread titled Chronic Inflammation as a contributor to Alzheimer’s. You can also search the forum for the following terms:

cirs
mold
mycotoxins
lyme

Good luck with your health journey!
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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Re: Newbie! Taking this ride with everyone for better or worse. . .

Post by CoachDD »

Wow - thanks to both Anna and Brain for your detailed responses and willingness to share your information and journey. I know there were additional labs done, so I may have had some of the testing you've recommended. . . since I am seeing a BP trained doctor next week, I am very hopeful he will do additional testing as he is completely focused on this (I've also registered through MPI Cognition).

Brain - I did have Lyme - tick bite/bullseye with a 21-day round of antibiotics back a few years ago. Since we were still searching for answers for my symptoms that were not improving significantly through diet and supplements over the last year and a half, I had the IngeneX lyme panel - which came back negative. My guess is the EBV (and possibly mold??) is affecting me most. However, we built our house 18 years ago - and do not have a leaky basement, so I question if this is a current issue.

Anna - I do believe I had the C4 Complement, but have to dig to find results. I've also had other autoimmune testing (ruling out Lupus and MS). I will also check the EBV panel to see if these other tests were also done.

Thankfully, I am feeling MUCH better as of late, so I'm really focused on keeping myself on this upward path. This information truly gives me a great amount guidance and insight on what to follow up on next - so thanks again for your time and support!! :)
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