EverSinceMono
New Member
My first post asking for help here, so I will try to include as much info as possible here, will upload my labs in excel, hope that will work. I hope this isn't too long.
Basically been to several docs and not much is working, what is the missing link?
My Chronic Fatigue History
For the last 18 years or so (around 1991) after being diagnosed with Mononucleosis, I suddenly found my self constantly tired, extreme fatigue, brain fog, frequent morning headaches, and chronic malaise. Sometimes extra sleep would work, but never felt totally refreshed, just a little better. However, spending your weekends in bed, just to struggle through the week did not seem right to me, so I went to seek medical help.
I’ve been to several Doctors over the years (being told lab tests are normal), I have tired B12 injections, vitamins and Herb concoctions by the dozens, Colon Cleansing, Fasting, Diets and juicing. Back in the 90's there was a lot of talk of the “Yuppie Disease“ or Mono - Epstein-Barr Virus (EBV), which is linked to Chronic Fatigue Syndrome (CFS) and even Fibromyalgia. Since there is not a cure for any of these, you are left with trying to treat the symptoms, which I tried for 18 years! Unfortunately I ended up having to sell my business, as I no longer had the energy or mind to cope.
Now in 2009, I am still going to medical doctors and with a change in health providers, I am now part of the Kaiser plan. I seek advice and have the doctors order blood tests, e.g. thyroid disorders, hormone imbalances, HGH, Lyme disease, etc. All tests came back “normal”. I even had testing done at a sleep center for sleep apnea and that came back "normal".
Fatigue, exhaustion
Weakness, feeling run down and sluggish
Brain Fog
Occasional Muscle cramps & aches
Impaired concentration
Hair Loss – Slow Hair Growth & dry
Decreased libido
Intolerance to cold, especially in the extremities
Night sweats (used to have, not so much any more)
Temporary morning headaches
Unexplained Lower back pain
Occasional sore throat
Occasional light headed when standing up
Depression / Suicidal - Negative thoughts
Occasional canker sores
Occasional constipation
Sensitivity to bright lights
Sensitivity to some perfumes or chemicals
Blood pressure 105/65 - Pulse rate 56
Other
Buzzing in ears, ears may plug up with strenuous exercising
Varying eyesight problems (due to age?) Starbursts around lights at night.
Symptoms seem to go in cycles and may take 4-5 days to go from severe back to normal/mild. My wife claims I must be Bi-polar. Also I may experience constipation for no apparent reason, energy levels and mood will swing from positive to negative. Moderate morning headaches (which dissipates within 20 minutes of waking) usually accompany a lower backache & stiffness for no explained reason, which will last 3-4 days. My energy level are horrible upon waking, it never seems like I get enough rest, EVER. It may not be until 10am or so that I start to feel a bit better, and energy may get better as day goes on (sometimes), however, for the most part I have increase energy in the evening, almost like my biorhythms are swapped.
Lyme Protocol
August 2006 – Thinking I might have Lyme (as I was born & raised in Upper Michigan, many ticks) I started the 100 day Lyme Borreliosis Treatment Protocol. Using Nutamedix products of SAMENTO, CUMANDA, BURBUR, & QUINA. During this time I also took another herb for 30 days called SHEOGI (Larrea Tridentata).
*While on this protocol I got tested for the Epstein-Barr virus and showed an OLD infection only.
* Tested for Borrelia Burgdorferi Antibody (Lyme) with a value of 49 range <120.
* Also tested for Erytrocyte Sedimentation rate (ESR), Westergren method, which appears normal.
I also had a HAIR analysis done around this time as well. I took supplements to help offset deficiencies.
Results: Lyme protocol had no apparent physiological effect.
Other
Even in adolescence I would occasionally have painful bowel movements resulting in diarrhea (strong peristalsis process of the intestines), which would come usually in two waves, usually during the middle of the night. Taking Alka-Seltzer seems to help alleviate, however usually within 30 minutes it is all over, and the next day all is well, no more diarrhea or pains. I may not experience this again for a year or more, when younger it seemed to happen more frequently (6months or so).
I have noticed that when I go through a bad cycle and crash I seem to have sinus congestion and or mild post nasal drip, as well as some mild constipation. Have more energy in the evenings that during day.
In regards to stimulants like coffee or soda, I tried coffee when younger and never liked the hyper feeling I got and the cotton mouth, as well as urinary effects, so I have always avoided it. Sodas, I gave up long ago as they are just sugar water and not healthy
. Sweets I avoid, as I had acne problems in my teens and was told sweets caused it, so I still avoid them to this day, also anything to sweet or rich doesn’t appeal to me anyway. So I do not know how my body reacts to sweets. However I do like fruits.
Alcohol: Normally I do not consume alcohol. However I MAY have a glass of wine once in a great while with dinner or special occasions. However, when I do over overindulge in alcohol for special occasions, it REALLY drains me for days, more than just your usual hangover. I will feel miserable for several days or longer… I crash, no energy and the usual fatigue symptoms.
Perfumes/Odors: Certain perfumes I will have severe reactions, runny nose, sneezing and itchy eyes. I will have to leave the room. While managing my automotive shop, I was always subject to exhaust fumes, various chemicals and solvents, exhaust fumes (carbon monoxide) seem to bother me the most.
Tongue: I have been told I have a Geographic tongue, which is more common in people who are sensitive to the environment -- those with allergies, eczema, and/or asthma.
TMJ: while not chronic, I have had several occurrences of TMJ over the years, I attribute this to stress and grinding of my teeth at night.
Hemorrhoids: Minor flare-ups from time to time usually aggravated by spicy foods and/or constipation.
…….
I do believe I have primary Adrenal Fatigue (insufficiency) with secondary pituitary issues and Hypothyroid. Low T is something that has occurred either due to age and possibly these complications?
I started an exercise program of mainly walking then working up to running about 2 years ago, and for the last 9 months I also started weight or resistance type training as well (crossfit). I was always active earlier in my life until I started having problems, which prevented me from being active, I now FORCE myself to do it. Not easy.
I feel I have always had a pretty good diet, I don’t drink coffee or sodas, don’t smoke, and aside from special events I rarely consume alcohol. It wasn’t until recently that I started to eat more green veggies, coconut oil, avocados & sweet potatoes. As far as supplemental pills, I have always taken a multivitamin, anti-oxidants, & glucosamine. It wasn’t until recently that I added fish oil, CoQ10, vitamin D, L-Glutamine, protein powder, etc. (see supplement list).
In regards to hormone therapy, I feel that nothing has helped. I pretty much still feel the same, and actually I feel my libido got WORSE! regardless of the amount of Testosterone (up to 125mg topical), DHEA (up to 50mg) & cortisol (up to 15mg). As such I left my current physician and tapering of cortisol and stopped T and DHEA. I noticed since I stopped the T & DHEA that I am dizzy and lightheaded. I have suspicions that I may me Androgen resistant. When we tried porcine thyroid I got worse, however this was during an elimination diet, so there is some confusion as to what was the cause. Looking back, it is obvious that I should not be doing an elimination diet and diagnostic replacement therapy at the same time.
I am currently trying to decipher if I have some sort of intolerance either to gluten or lactose. Order lab work from EnteroLab for gluten and casein intolerance, just trying to find answers to the primary cause and these are probably secondary to Adrenal Fatigue? Celiac disease profile lab results from Kaiser came back Negative.
I notice on my lab work that my Total T levels went down while Estradiol levels rose. My Saliva Free T levels may not have had not enough time to come down (14 days) from last supplementation.
Vitamin B12 practically doubled from last time, possibly due to change in diet?
Vitamin D levels are low, considering supplementation of 5,000IU daily.
Ferritin values came down into normal range, while Iron rose. I am not supplementing Iron, must be diet.
MCV (red blood cell size) values are high, associated with Hypothyroidism (as well as other possibilities)
Platelet count is gradually decreasing over time. Is this due to previous infectious mono (EBV).
Lipid Panel values appear normal.
PSA level did go down from previous results.
DHEA levels rose slightly, considering supplementation.
SHBG values did drop, however still high
IGF-1 value doubled, maybe due to additional exercise and diet (L-Glutamine).
Estradiol values rose, indicating aromatase converting Testosterone to Estradiol or Estrone.
Pregnenolone is within range but on high side. FSH is on the low side.
Total T levels are much lower than previous results. Blood test taken during supplementation 2/16/10.
TSH is still high, T4 free is still in low range. T3 is lower. Free T3 is low. Indicating a Hypothyroid situation is this secondary to Adrenal is the question. Reverse T3 is normal, actually right at optimal.
TgAb is on the high side for Thyroglobulin.
Saliva test: Progestorone is low, Testosterone Free is low, DHEA is low, cortisol is low
Low morning and daily average temperatures, low blood pressure 104/66
……….
Dr. Kedy Ying Jao, D.O. F.A.A.F.P
through saliva testing found my morning cortisol levels very low and my Testosterone levels below normal, noticed my Thyroid lab results, but she wanted to treat the Adrenals first. Here is the timeline:
First Initial visit 10-2-2009
Testosterone injection: 1cc (initial boost) 10-2-2009
Testosterone Cream: 10% 10mg/.01ml .5ml - .50mg once daily in AM - DHEA: 25mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
10-29-09
Testosterone Cream: 15% 15mg/.01ml .5ml - .75mg dose apply once daily in AM
DHEA: 50mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
NOTES: Poor response to previous T injection and cream,( libido seemed worse)so topical T cream & DHEA was increased.
11-24-09
Testosterone Cream: 15% 15mg/.01ml .5ml - .75mg dose apply once daily in AM
DHEA: 50mg daily in AM
Cortef (Hydrocortisone): 5mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
NOTES: Still no increase in energy or Libido so Cortef was added. (Am I androgen resistant?)
1-5-2010
Testosterone injection: 1cc (2nd boost)
Testosterone Cream: .5ml - .75mg dose in AM .50 in PM (125mg total)
DHEA: 25mg daily (reduced to 25mg)
Cortef (Hydrocortisone): 7.5mg in AM & 2.5mg Lunch time
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
NOTES: since still no improvement in symptoms Cortef was increase to 7.5mg and 2.5mg noon. I increased this to 10mg AM & 5mg at noon and while not optimum I have better results.(energy still seems to cycle day to day but better). Still low Libido.
1-28-2010 She had me start an Elimination/Provocation Diet using Metagenics Ultra Clear Plus Medical food powder.
2-4-2010
Testosterone Cream: .5ml - .75mg dose in AM .50 in PM (125mg total)
DHEA: 25mg daily
Cortef (Hydrocortisone): 10mg in AM & 5mg Lunch time
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
Added: 2-10-10 started Porcine Thyroid 30mg (½ grain) (T4-T3-T2-T1 trace formula) compound pharmacy
NOTES: Since libido was still low, Porcine Thyroid was added and was told this should give more energy & Libido.
*** However after ONE day on this I gradually started to CRASH, eventually after6 days(2-15-10) I stopped taking it. It took me several days to recover! Unfortunately since I was on a elimination diet I thought it was due to dairy, as I added dairy the 2nd day(2-11-10) after the thyroid meds were taken. So I stopped the dairy then the wheat, however it took a few days to figure out it was the thyroid med. 2-15-10 Took last Porcine Thyroid dose. Apparently I am not converting T4 to T3 due to adrenals?
2-15-10 Stopped 25mg DHEA capsules.
2-19-10 Stopped Testosterone Cream.
2-23-10 Due to confusion with Thyroid meds and food intolerances, I restarted the Elimination/Provocation diet over, however this was inconclusive.
I stopped seeing this doctor and thorough a friend of a friend heard about Holtorf medical group and sought them out.
Holtorf Medical Group – Dr. Laufer
3-25-10 (first consult + supp) $726.87
Initial Diagnosis prior to labs: Chronic Fatigue
Order lab work from Quest Diagnostics (specialty tests Kaiser not able to do) Also Igenex test.
Supplements: Sleep Tight #90 $36, MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Immuno-Stim #180 $52, Flex Plus Powder #60 $54.
Medications/Injections: none at this time.
4-22-10 (2nd visit Lab review) $1,388.08 + $66pharm = $1,454.08
Diagnosis: Chronic Fatigue / Hypothyroid / Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 $54. Fibrinex #120 $89, Transfer Factor Multi-Immune #60 72x2=$144, Immuno-Stim #180 $52,
Medications/Injections: Gammagobulin 2cc-Injection 4x120=$480, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. Testosterone Cream my existing supply 200gm daily. Thyroid meds, start titrate #10 T3@2.5mcg, #10 T3@5mcg, #30 T3@7.5mcg capsule.
6-3-10 (3rd visit) $1,373.69 + 203.75pharm = $1,577.44
Diagnosis: Chronic Fatigue – Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 2x54=$108. Fibrinex #120 $89, Transfer Factor Multi-Immune #60 2x72=$144, Immuno-Stim not needed with Gammagobulin.
Medications/Injections: Gammagobulin 2cc-Injection 4x120=$480, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. (NEW) Testosterone/Progesterone (2x30gm) Cream 200/2.5mg/gm daily. Thyroid meds, still titrate #10 T3@10mcg, #50 T3@50mcg capsule final.
8-5-10 (4th visit) $1,438.70 + $178.43 = $1,617.13
Diagnosis: Chronic Fatigue – Hypothyroid - Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 $54. Boluoke (in place of Fibrinex) mailed Fibrinex #120 $89, Transfer Factor Multi-Immune #60 $72, Immuno-Stim not needed with Gammagobulin.
Medications/Injections: Gammagobulin 2cc-Injection 3x120=$360, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. (NEW) Cypionate/Progesterone 200mg/2.5mg per ML 10ML Vial (IM EOW). (NEW) HCG 11,000 Vial 275iu .25cc 2x weekly, Thyroid meds, change (NEW) T4 38mcg/T3 10mcg capsule combo .
This last thyroid meds are having me crash, although it was a slow process, now I am feeling worse than ever. I see the doc next week.
The T injections do not seem to work, although my labs show that T is elevated.
My current symptoms include:
• Difficulty falling asleep at night
• Waking frequently during the night
• Difficulty waking in the morning, not feeling refreshed
• Bright lights bothered me more than others
• Startled easily due to noise, intolerant of noises
• Dizzy/lightheaded when standing from sitting or from lying down
• Take things too seriously, stressed, anxious
• Difficulty coping with certain people or events
• Extreme Fatigue, constantly wiped out
• Taking days to recover from even minor stress
• Severe fatigue, no energy, falling asleep at my work desk.
• Feel like I have the flu, been in a boxing match
• Get winded easily, poor lung capacity
• Muscle and joint pains, more now than ever
• Lightheaded – headaches
• Depression, Malaise
From my labs it appears my cortisol levels are improving with just the 5mg of Cortef. All labs tests are done WITHOUT on meds that morning
Here is what I am taking from Holtorf:
These two items are suppose to help out with my autoimmune system,
Gammagobulin 2cc every 2 weeks (anti viral) as natural killer cells, etc were low
Acyclovir 400mg 3times daily (due to HHV6 antibody Titers ) so my immune system won’t have to work at keeping this at bay?
Supplements to help support Mitochondria and alleviate fibrin, as well as build up the immune and adrenals:
MitoNT
Adrenal Repair
Flex Plus Powder
Fibrinex
Transfer Factor Multi-Immune
Testosterone: 1cc every two weeks
HCG: 275mg (.25cc) twice weekly
Thyroid med: T4 38mcg/T3 10mcg capsule combo in the morning
Cortisol: Cortef 5mg in the morning
Lunesta for sleep
Other supplements on my own:
Multivitamin & Mineral Supplement
Vitamin C
N-Acetyl Cysteine (NAC
Protein Powder (Optimum Nutrition or Designer Whey)
Glucosamine & MSM
Super B Complex
Zinc
Selenium
Jarrow’s Bone-up
Acetyl-L-Carnitine:
Alpha Lipoic Acid (ALA
NAC N-Acetyl-Cysteine:
L-Arginine:
CoQ10
Magnesium
Omega 3 fish oil
I asked about DHEA supplement and the doc said “we never know what this will get converted to” so not prescribed.
So my main complaint is joint and muscle ache/pain, low or nonexistent libido, no energy, poor sleep, depression, pretty much all the same, like all this is a waist of time. Something is being missed. He told me last time that it takes time, there is now magic pill and that the cell die off from the Acyclovir may be causing the way I feel too. Aahhh.
I was losing my hair and since there was no diagnosis on my condition I had a hair transplant done two years ago and that doc had my on Finestride which I took for about a year. I stopped this once I read up more about it and the possible side effects, so maybe the Finestride has something to do with the transdermal cream not working? Maybe other complications? Low Libido?
So what do you guys here think?
Give them more time?
What adjustments do you see in the protocol should I make?
Basically been to several docs and not much is working, what is the missing link?
My Chronic Fatigue History
For the last 18 years or so (around 1991) after being diagnosed with Mononucleosis, I suddenly found my self constantly tired, extreme fatigue, brain fog, frequent morning headaches, and chronic malaise. Sometimes extra sleep would work, but never felt totally refreshed, just a little better. However, spending your weekends in bed, just to struggle through the week did not seem right to me, so I went to seek medical help.
I’ve been to several Doctors over the years (being told lab tests are normal), I have tired B12 injections, vitamins and Herb concoctions by the dozens, Colon Cleansing, Fasting, Diets and juicing. Back in the 90's there was a lot of talk of the “Yuppie Disease“ or Mono - Epstein-Barr Virus (EBV), which is linked to Chronic Fatigue Syndrome (CFS) and even Fibromyalgia. Since there is not a cure for any of these, you are left with trying to treat the symptoms, which I tried for 18 years! Unfortunately I ended up having to sell my business, as I no longer had the energy or mind to cope.
Now in 2009, I am still going to medical doctors and with a change in health providers, I am now part of the Kaiser plan. I seek advice and have the doctors order blood tests, e.g. thyroid disorders, hormone imbalances, HGH, Lyme disease, etc. All tests came back “normal”. I even had testing done at a sleep center for sleep apnea and that came back "normal".
Fatigue, exhaustion
Weakness, feeling run down and sluggish
Brain Fog
Occasional Muscle cramps & aches
Impaired concentration
Hair Loss – Slow Hair Growth & dry
Decreased libido
Intolerance to cold, especially in the extremities
Night sweats (used to have, not so much any more)
Temporary morning headaches
Unexplained Lower back pain
Occasional sore throat
Occasional light headed when standing up
Depression / Suicidal - Negative thoughts
Occasional canker sores
Occasional constipation
Sensitivity to bright lights
Sensitivity to some perfumes or chemicals
Blood pressure 105/65 - Pulse rate 56
Other
Buzzing in ears, ears may plug up with strenuous exercising
Varying eyesight problems (due to age?) Starbursts around lights at night.
Symptoms seem to go in cycles and may take 4-5 days to go from severe back to normal/mild. My wife claims I must be Bi-polar. Also I may experience constipation for no apparent reason, energy levels and mood will swing from positive to negative. Moderate morning headaches (which dissipates within 20 minutes of waking) usually accompany a lower backache & stiffness for no explained reason, which will last 3-4 days. My energy level are horrible upon waking, it never seems like I get enough rest, EVER. It may not be until 10am or so that I start to feel a bit better, and energy may get better as day goes on (sometimes), however, for the most part I have increase energy in the evening, almost like my biorhythms are swapped.
Lyme Protocol
August 2006 – Thinking I might have Lyme (as I was born & raised in Upper Michigan, many ticks) I started the 100 day Lyme Borreliosis Treatment Protocol. Using Nutamedix products of SAMENTO, CUMANDA, BURBUR, & QUINA. During this time I also took another herb for 30 days called SHEOGI (Larrea Tridentata).
*While on this protocol I got tested for the Epstein-Barr virus and showed an OLD infection only.
* Tested for Borrelia Burgdorferi Antibody (Lyme) with a value of 49 range <120.
* Also tested for Erytrocyte Sedimentation rate (ESR), Westergren method, which appears normal.
I also had a HAIR analysis done around this time as well. I took supplements to help offset deficiencies.
Results: Lyme protocol had no apparent physiological effect.
Other
Even in adolescence I would occasionally have painful bowel movements resulting in diarrhea (strong peristalsis process of the intestines), which would come usually in two waves, usually during the middle of the night. Taking Alka-Seltzer seems to help alleviate, however usually within 30 minutes it is all over, and the next day all is well, no more diarrhea or pains. I may not experience this again for a year or more, when younger it seemed to happen more frequently (6months or so).
I have noticed that when I go through a bad cycle and crash I seem to have sinus congestion and or mild post nasal drip, as well as some mild constipation. Have more energy in the evenings that during day.
In regards to stimulants like coffee or soda, I tried coffee when younger and never liked the hyper feeling I got and the cotton mouth, as well as urinary effects, so I have always avoided it. Sodas, I gave up long ago as they are just sugar water and not healthy
. Sweets I avoid, as I had acne problems in my teens and was told sweets caused it, so I still avoid them to this day, also anything to sweet or rich doesn’t appeal to me anyway. So I do not know how my body reacts to sweets. However I do like fruits.Alcohol: Normally I do not consume alcohol. However I MAY have a glass of wine once in a great while with dinner or special occasions. However, when I do over overindulge in alcohol for special occasions, it REALLY drains me for days, more than just your usual hangover. I will feel miserable for several days or longer… I crash, no energy and the usual fatigue symptoms.
Perfumes/Odors: Certain perfumes I will have severe reactions, runny nose, sneezing and itchy eyes. I will have to leave the room. While managing my automotive shop, I was always subject to exhaust fumes, various chemicals and solvents, exhaust fumes (carbon monoxide) seem to bother me the most.
Tongue: I have been told I have a Geographic tongue, which is more common in people who are sensitive to the environment -- those with allergies, eczema, and/or asthma.
TMJ: while not chronic, I have had several occurrences of TMJ over the years, I attribute this to stress and grinding of my teeth at night.
Hemorrhoids: Minor flare-ups from time to time usually aggravated by spicy foods and/or constipation.
…….
I do believe I have primary Adrenal Fatigue (insufficiency) with secondary pituitary issues and Hypothyroid. Low T is something that has occurred either due to age and possibly these complications?
I started an exercise program of mainly walking then working up to running about 2 years ago, and for the last 9 months I also started weight or resistance type training as well (crossfit). I was always active earlier in my life until I started having problems, which prevented me from being active, I now FORCE myself to do it. Not easy.
I feel I have always had a pretty good diet, I don’t drink coffee or sodas, don’t smoke, and aside from special events I rarely consume alcohol. It wasn’t until recently that I started to eat more green veggies, coconut oil, avocados & sweet potatoes. As far as supplemental pills, I have always taken a multivitamin, anti-oxidants, & glucosamine. It wasn’t until recently that I added fish oil, CoQ10, vitamin D, L-Glutamine, protein powder, etc. (see supplement list).
In regards to hormone therapy, I feel that nothing has helped. I pretty much still feel the same, and actually I feel my libido got WORSE! regardless of the amount of Testosterone (up to 125mg topical), DHEA (up to 50mg) & cortisol (up to 15mg). As such I left my current physician and tapering of cortisol and stopped T and DHEA. I noticed since I stopped the T & DHEA that I am dizzy and lightheaded. I have suspicions that I may me Androgen resistant. When we tried porcine thyroid I got worse, however this was during an elimination diet, so there is some confusion as to what was the cause. Looking back, it is obvious that I should not be doing an elimination diet and diagnostic replacement therapy at the same time.
I am currently trying to decipher if I have some sort of intolerance either to gluten or lactose. Order lab work from EnteroLab for gluten and casein intolerance, just trying to find answers to the primary cause and these are probably secondary to Adrenal Fatigue? Celiac disease profile lab results from Kaiser came back Negative.
I notice on my lab work that my Total T levels went down while Estradiol levels rose. My Saliva Free T levels may not have had not enough time to come down (14 days) from last supplementation.
Vitamin B12 practically doubled from last time, possibly due to change in diet?
Vitamin D levels are low, considering supplementation of 5,000IU daily.
Ferritin values came down into normal range, while Iron rose. I am not supplementing Iron, must be diet.
MCV (red blood cell size) values are high, associated with Hypothyroidism (as well as other possibilities)
Platelet count is gradually decreasing over time. Is this due to previous infectious mono (EBV).
Lipid Panel values appear normal.
PSA level did go down from previous results.
DHEA levels rose slightly, considering supplementation.
SHBG values did drop, however still high
IGF-1 value doubled, maybe due to additional exercise and diet (L-Glutamine).
Estradiol values rose, indicating aromatase converting Testosterone to Estradiol or Estrone.
Pregnenolone is within range but on high side. FSH is on the low side.
Total T levels are much lower than previous results. Blood test taken during supplementation 2/16/10.
TSH is still high, T4 free is still in low range. T3 is lower. Free T3 is low. Indicating a Hypothyroid situation is this secondary to Adrenal is the question. Reverse T3 is normal, actually right at optimal.
TgAb is on the high side for Thyroglobulin.
Saliva test: Progestorone is low, Testosterone Free is low, DHEA is low, cortisol is low
Low morning and daily average temperatures, low blood pressure 104/66
……….
Dr. Kedy Ying Jao, D.O. F.A.A.F.P
through saliva testing found my morning cortisol levels very low and my Testosterone levels below normal, noticed my Thyroid lab results, but she wanted to treat the Adrenals first. Here is the timeline:
First Initial visit 10-2-2009
Testosterone injection: 1cc (initial boost) 10-2-2009
Testosterone Cream: 10% 10mg/.01ml .5ml - .50mg once daily in AM - DHEA: 25mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
10-29-09
Testosterone Cream: 15% 15mg/.01ml .5ml - .75mg dose apply once daily in AM
DHEA: 50mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
NOTES: Poor response to previous T injection and cream,( libido seemed worse)so topical T cream & DHEA was increased.
11-24-09
Testosterone Cream: 15% 15mg/.01ml .5ml - .75mg dose apply once daily in AM
DHEA: 50mg daily in AM
Cortef (Hydrocortisone): 5mg daily in AM
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
NOTES: Still no increase in energy or Libido so Cortef was added. (Am I androgen resistant?)
1-5-2010
Testosterone injection: 1cc (2nd boost)
Testosterone Cream: .5ml - .75mg dose in AM .50 in PM (125mg total)
DHEA: 25mg daily (reduced to 25mg)
Cortef (Hydrocortisone): 7.5mg in AM & 2.5mg Lunch time
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
NOTES: since still no improvement in symptoms Cortef was increase to 7.5mg and 2.5mg noon. I increased this to 10mg AM & 5mg at noon and while not optimum I have better results.(energy still seems to cycle day to day but better). Still low Libido.
1-28-2010 She had me start an Elimination/Provocation Diet using Metagenics Ultra Clear Plus Medical food powder.
2-4-2010
Testosterone Cream: .5ml - .75mg dose in AM .50 in PM (125mg total)
DHEA: 25mg daily
Cortef (Hydrocortisone): 10mg in AM & 5mg Lunch time
Adrenal Rebuilder Formula (AR) (Dr. James Wilson’s Formula): 2,1,1,2 capsule, 4 times daily
Super Adrenal Stress Formula (F1) (Dr. James Wilson’s Formula): 2,1,1,1 capsule, 4 times daily
“New Vitality” Super Beta Prostate Formula: 2 caplets daily
Added: 2-10-10 started Porcine Thyroid 30mg (½ grain) (T4-T3-T2-T1 trace formula) compound pharmacy
NOTES: Since libido was still low, Porcine Thyroid was added and was told this should give more energy & Libido.
*** However after ONE day on this I gradually started to CRASH, eventually after6 days(2-15-10) I stopped taking it. It took me several days to recover! Unfortunately since I was on a elimination diet I thought it was due to dairy, as I added dairy the 2nd day(2-11-10) after the thyroid meds were taken. So I stopped the dairy then the wheat, however it took a few days to figure out it was the thyroid med. 2-15-10 Took last Porcine Thyroid dose. Apparently I am not converting T4 to T3 due to adrenals?
2-15-10 Stopped 25mg DHEA capsules.
2-19-10 Stopped Testosterone Cream.
2-23-10 Due to confusion with Thyroid meds and food intolerances, I restarted the Elimination/Provocation diet over, however this was inconclusive.
I stopped seeing this doctor and thorough a friend of a friend heard about Holtorf medical group and sought them out.
Holtorf Medical Group – Dr. Laufer
3-25-10 (first consult + supp) $726.87
Initial Diagnosis prior to labs: Chronic Fatigue
Order lab work from Quest Diagnostics (specialty tests Kaiser not able to do) Also Igenex test.
Supplements: Sleep Tight #90 $36, MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Immuno-Stim #180 $52, Flex Plus Powder #60 $54.
Medications/Injections: none at this time.
4-22-10 (2nd visit Lab review) $1,388.08 + $66pharm = $1,454.08
Diagnosis: Chronic Fatigue / Hypothyroid / Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 $54. Fibrinex #120 $89, Transfer Factor Multi-Immune #60 72x2=$144, Immuno-Stim #180 $52,
Medications/Injections: Gammagobulin 2cc-Injection 4x120=$480, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. Testosterone Cream my existing supply 200gm daily. Thyroid meds, start titrate #10 T3@2.5mcg, #10 T3@5mcg, #30 T3@7.5mcg capsule.
6-3-10 (3rd visit) $1,373.69 + 203.75pharm = $1,577.44
Diagnosis: Chronic Fatigue – Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 2x54=$108. Fibrinex #120 $89, Transfer Factor Multi-Immune #60 2x72=$144, Immuno-Stim not needed with Gammagobulin.
Medications/Injections: Gammagobulin 2cc-Injection 4x120=$480, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. (NEW) Testosterone/Progesterone (2x30gm) Cream 200/2.5mg/gm daily. Thyroid meds, still titrate #10 T3@10mcg, #50 T3@50mcg capsule final.
8-5-10 (4th visit) $1,438.70 + $178.43 = $1,617.13
Diagnosis: Chronic Fatigue – Hypothyroid - Testosterone Deficiency
Supplements: MitoNT #190 $52.50 (don’t take in pm), Adrenal Repair #120 $76, Flex Plus Powder #60 $54. Boluoke (in place of Fibrinex) mailed Fibrinex #120 $89, Transfer Factor Multi-Immune #60 $72, Immuno-Stim not needed with Gammagobulin.
Medications/Injections: Gammagobulin 2cc-Injection 3x120=$360, Valtrex (Acyclovir) 400mg 3x daily, Lunesta (Zolpidem) 10mg nightly as needed for sleep. (NEW) Cypionate/Progesterone 200mg/2.5mg per ML 10ML Vial (IM EOW). (NEW) HCG 11,000 Vial 275iu .25cc 2x weekly, Thyroid meds, change (NEW) T4 38mcg/T3 10mcg capsule combo .
This last thyroid meds are having me crash, although it was a slow process, now I am feeling worse than ever. I see the doc next week.
The T injections do not seem to work, although my labs show that T is elevated.
My current symptoms include:
• Difficulty falling asleep at night
• Waking frequently during the night
• Difficulty waking in the morning, not feeling refreshed
• Bright lights bothered me more than others
• Startled easily due to noise, intolerant of noises
• Dizzy/lightheaded when standing from sitting or from lying down
• Take things too seriously, stressed, anxious
• Difficulty coping with certain people or events
• Extreme Fatigue, constantly wiped out
• Taking days to recover from even minor stress
• Severe fatigue, no energy, falling asleep at my work desk.
• Feel like I have the flu, been in a boxing match
• Get winded easily, poor lung capacity
• Muscle and joint pains, more now than ever
• Lightheaded – headaches
• Depression, Malaise
From my labs it appears my cortisol levels are improving with just the 5mg of Cortef. All labs tests are done WITHOUT on meds that morning
Here is what I am taking from Holtorf:
These two items are suppose to help out with my autoimmune system,
Gammagobulin 2cc every 2 weeks (anti viral) as natural killer cells, etc were low
Acyclovir 400mg 3times daily (due to HHV6 antibody Titers ) so my immune system won’t have to work at keeping this at bay?
Supplements to help support Mitochondria and alleviate fibrin, as well as build up the immune and adrenals:
MitoNT
Adrenal Repair
Flex Plus Powder
Fibrinex
Transfer Factor Multi-Immune
Testosterone: 1cc every two weeks
HCG: 275mg (.25cc) twice weekly
Thyroid med: T4 38mcg/T3 10mcg capsule combo in the morning
Cortisol: Cortef 5mg in the morning
Lunesta for sleep
Other supplements on my own:
Multivitamin & Mineral Supplement
Vitamin C
N-Acetyl Cysteine (NAC
Protein Powder (Optimum Nutrition or Designer Whey)
Glucosamine & MSM
Super B Complex
Zinc
Selenium
Jarrow’s Bone-up
Acetyl-L-Carnitine:
Alpha Lipoic Acid (ALA
NAC N-Acetyl-Cysteine:
L-Arginine:
CoQ10
Magnesium
Omega 3 fish oil
I asked about DHEA supplement and the doc said “we never know what this will get converted to” so not prescribed.
So my main complaint is joint and muscle ache/pain, low or nonexistent libido, no energy, poor sleep, depression, pretty much all the same, like all this is a waist of time. Something is being missed. He told me last time that it takes time, there is now magic pill and that the cell die off from the Acyclovir may be causing the way I feel too. Aahhh.
I was losing my hair and since there was no diagnosis on my condition I had a hair transplant done two years ago and that doc had my on Finestride which I took for about a year. I stopped this once I read up more about it and the possible side effects, so maybe the Finestride has something to do with the transdermal cream not working? Maybe other complications? Low Libido?
So what do you guys here think?
Give them more time?
What adjustments do you see in the protocol should I make?
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