Adrenal Fatigue - Hypothyroid - Low T complications

[Fowl]

Wow, that was almost like reading my medical history verbatim. Even down to the same medical group and rx's. With the exception that I did have apnea.

I have had the same issues for 11 years. Started the same way, too. I have yet to find out what it is but labs suggest I have elevated EBV titers so we are going after that right now. I am on TRT and T-3 and I do feel better but still have the brain fog and fatigue symptoms.

A few things that help me that you might want to think about. First exercise helps. I lift weights 5-6x's/week and then do cardio 3-4 x's on days when I have the energy. On days that I am feeling fatigued I will make myself lift and it will make me feel better afterward. So I would advise trying to stay on your exercise program.

Avoid stimulants as they will make you feel worse and make your heeart beat race. You have probably already figured that one out. Avoid alcohol. Avoid stress, physical and emotional. Good sleep doesn't necessarily help, but not getting sleep will definitely make you feel worse so use the sleep aids. I have used trazadone for the past decade with good results - no hangover the next morning.

I too have low blood pressure and that is likely why your are dizzy upon standing - orthostatic intollerance. For a time I was on fludrocortisone (Florinef) and Coretef and that did help. As a sidenote every since I started on TRT my dizzyness has disapated and my bp has gone up a little which is usually a deleterious side of TRT but not in our case. I also have been on prozac at a low dose (10mg) for the past 10 years and that seems to help although I think that may have contributed to my low-normal T levels.

One area that you might want to investigate that I am looking into is getting tested for XMRV retrovirus. Recent research has shown a correlation between CFS and XMRV. XMRV is a retrovirus much like HIV. In theory it makes sense that it is caused by a virus because all of our labs come back normal and the lack of correlation between days you feel bad and any variable.

NIH just concluded a conference on XMRV and CFS with some interesting findings.

Here are a couple links about XMRV:

Whittemore-Peterson Institute Bets Big on XMRV - Health Blog - WSJ

Whittemore Peterson Institute for Neuro-Immune Disease - a place to look into getting tested - I think it runs about $500

and I know Dr. Scally has a recent post on here showing the recent research findings on XMRV

 

[zkt]

It would be helpful if you understood the statistical relevance of testing.

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Having labs at the average or center of the normal range shouldnt be your goal. We arent all the same and its a mistake to try to match your own biochemistry to a statistical tool.
Hope that makes sense.



Coloring is my own shading for indicating what I THINK is a problem. Yellow is caution/possible problem. Red is either High or Low Levels.

 

[sako]

which makes lab testing even more evasive... It really seems as if you should be going by symptomology most of the time

 

[Nate92]

Wow, that was almost like reading my medical history verbatim. Even down to the same medical group and rx's. With the exception that I did have apnea.

I have had the same issues for 11 years. Started the same way, too. I have yet to find out what it is but labs suggest I have elevated EBV titers so we are going after that right now. I am on TRT and T-3 and I do feel better but still have the brain fog and fatigue symptoms.

A few things that help me that you might want to think about. First exercise helps. I lift weights 5-6x's/week and then do cardio 3-4 x's on days when I have the energy. On days that I am feeling fatigued I will make myself lift and it will make me feel better afterward. So I would advise trying to stay on your exercise program.

Avoid stimulants as they will make you feel worse and make your heeart beat race. You have probably already figured that one out. Avoid alcohol. Avoid stress, physical and emotional. Good sleep doesn't necessarily help, but not getting sleep will definitely make you feel worse so use the sleep aids. I have used trazadone for the past decade with good results - no hangover the next morning.

I too have low blood pressure and that is likely why your are dizzy upon standing - orthostatic intollerance. For a time I was on fludrocortisone (Florinef) and Coretef and that did help. As a sidenote every since I started on TRT my dizzyness has disapated and my bp has gone up a little which is usually a deleterious side of TRT but not in our case. I also have been on prozac at a low dose (10mg) for the past 10 years and that seems to help although I think that may have contributed to my low-normal T levels.

One area that you might want to investigate that I am looking into is getting tested for XMRV retrovirus. Recent research has shown a correlation between CFS and XMRV. XMRV is a retrovirus much like HIV. In theory it makes sense that it is caused by a virus because all of our labs come back normal and the lack of correlation between days you feel bad and any variable.

NIH just concluded a conference on XMRV and CFS with some interesting findings.

Here are a couple links about XMRV:

Whittemore-Peterson Institute Bets Big on XMRV - Health Blog - WSJ

Whittemore Peterson Institute for Neuro-Immune Disease - a place to look into getting tested - I think it runs about $500

and I know Dr. Scally has a recent post on here showing the recent research findings on XMRV

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?

So I know it's been a while guys... but how have you both been doing? I'm 21 with a very similar case for maybe 10 years now. I am interested to see your progress.

 

[Dr JIM]

Based on the description, your diagnostic evaluation lacked medical insight, was frivolous, unwarranted and analogous to the tail wagging the dog!

Interestingly excluding , hormonal testing (Test, TSH, Glucose, etc) you've had more lab tests done on yourself, then I perform in ONE YEAR of my entire office practice.

What's even more disconcerting is after ELEVEN YEARS of testing, they/we still don't "know what's wrong with me for sure"!

Sounds like your another patient in need of a disease!

Utterly Absurd

 

[CensoredBoardsSuck]

Based on the description, your diagnostic evaluation lacked medical insight, was frivolous, unwarranted and analogous to the tail wagging the dog!

Interestingly excluding , hormonal testing (Test, TSH, Glucose, etc) you've had more lab tests done on yourself, then I perform in ONE YEAR of my entire office practice.

What's even more disconcerting is after ELEVEN YEARS of testing, they/we still don't "know what's wrong with me for sure"!

Sounds like your another patient in need of a disease!

Utterly Absurd

I believe it was Sidney Garfield that refered to these patients as "the worried well."

You tell it like it is, Doc.

 

[Dr JIM]

It's nice to know in spite of the meat beads, fruits and nuts this and other forums inherently attract, it remains appealing to folk of your ilk CBS!

 

[EverSinceMono]

So I know it's been a while guys... but how have you both been doing? I'm 21 with a very similar case for maybe 10 years now. I am interested to see your progress.

Nate92…
Yeah it has been awhile… So much to say.
Been to a rheumatologist tests were inconclusive.
Went and found an Acupuncturist who also was taught practices from
Datis Kharrazian, DHSc, DC, MS
Dr. K News
and tried his protocols with acupuncture for 9 months without results. However during this time I did an elimination diet and found eliminating GLUTEN & Dairy helped with my brain fog and had testing done from Cyrex Cyrex Laboratories > Home for cross-reactive food sensitivities which I suggest you get done. Also have tests done at EnteroLab https://www.enterolab.com/default.aspx for Gluten sensitivity, which came out positive, I have to avoid OATS as well as it is not just a gluten issue ( but proteins of grains), this is more along the lines of IBS, Leaky Gut. Which I will explain more. ( I believe a lot of gluten & dairy problems are related to leaky gut, but just my theory).

We have to look at this process as peeling away layers of an Onion. Eliminating Gluten and ALL grains except Brown and wild Rice helped. I have been on the PALEO diet for the last 2 years, which helped.

I stopped all Testosterone and Thyroid supplements as these just caused other problems.
I started a regular exercise program, Crossfit. Which has boosted my T levels as doing leg work, air squats, dead lifts, lunges, all help circulation and boost HGH. My T levels are now in the 700 range without supplements. I now have morning wood. However I went overboard and wore down my energy levels and caused some minor injuries. As I would feel like a truck hit me for days and up to several weeks sometimes due to the overwork as I need to build my adrenals, mitrochondria back up.

All this I learned LATER from my current doc who is Dr Chitra Bhakta
Welcome to ::OCIMC::
(who specializes in Lyme and Auto Immune conditions etc.) and has me on a NO AMYLOSE program, which is much like PALEO. But with strict NO STARCHES! I have been with her that last 6 months and it is a slow process but I am seeing results.

SO what is my diagnosis….. Well it really doesn’t have a label, although we could say it is most definitely Auto Immuno. You see I had my own business, was under a lot of stress, worked 80+ hours a week, got sick many times, took ant-biotics, came down with Mono ignored it and kept working. So my Immune system broke down, adrenals are weak, very poor gut flora, which causes leaky gut then leads to all sorts of immune problems, gluten, dairy, sugar, starches have got to be eliminated. There is a whole MIND GUT connection. Basically Repair, Replenish, Renew the Gut and let your Immune system do its job. Calm the immune system.

Tested for Lyme: Negative
Tested for Mold Allergies: Negative
Tested for Allergens: nothing severe something to do with Olive pollen, but no cat, dog issues, carpets etc.
Tested Immunoglbulins Panel IGG, IGA, IGM and this is where we found several problems (LOW)
Many other tests where done, but I will only report the areas of concern, which most of us have these viruses … EBV, CMV, HHV6 however I have elevated titers of these. So along with my leaky gut and well as slight CANDIDA overgrowth and weak adrenals my immune system can’t keep up.

IVIG (intravenous immunoglobulins) was discussed but my level aren’t high enough to warrant such a costly protocol. Instead a product called i26 is to be used, which is a egg powder with immune properties.

Let me just give you my protocol:
DIET is huge, do the Paleo, No Amylose programs- no starches, no sugar, no processed foods, no grains. Etc. eat as much organic, grass fed, free range meats and vegetables as you can. Veggies should out do your meats. No Soda, No Coffee, No Dairy (fermented like GOAT yogurt, sauerkraut etc are good)
Biofilm-X to eradicate candida overgrowth (her own product)
Cholestryramine (CSM) to absorb toxic materials and be eliminated rather than reabsorbed
Vit B-12 methylcobalamin injections 5,000 mcg/ml 3x weekly
Ketamine Gel as needed for joint pain (I am off this now)
Valium 10mg in AM for pain and reduce immune responses
Advil 400mg am and Pm with food
Liv.52 (not the USA brand LiverCare) for liver care
Serrapeptase 40,000 units
Claritin or Zyrtec 5-10mg for immune responses (decongestant)
Magnesium Glycinate 800mg at night for leg cramps
Espom salt baths to relax
Drink decaf green tea prior to bed to relax
Benadryl 25-50mg at bedtime for better sleep
Orthobiotics (probiotic) 1 cap 15 min prior to each meal for replenish gut flora
Jarrow-Zyme (digestive enzyme) 1-2 cap with meal for food digestion
MSM 1tsp (1gram) and L-Glutamine 1Tbsp (5gram) with each meal for healing of gut
Omega3 fish oil Carlson brand 1-2 caps 2x daily
Inflammablock 2 caps 2x daily (her own product) to fight inflammation
Corticalm 2 caps 2x daily to help adrenals (her product)
The Energy Factor 4caps 2x daily for energy support (mitrochondria)
CoQ10 as ubiquinone 50-100mg once daily for mitrochondria support)
i26 hyperimmune egg powder 4 scoops with meals for immune support
Tri-Fortify (Glutathione) for Methylation 1tsp daily

My cellular oxygen levels where found to be low so I got an Oxygen concentrator (prescription brand 90%+ pure oxy) that is use while sleeping.

I am making slow, and do mean slow progress, but this protocol is the best thing and only thing that is making any sort of headway. Although good and a must, the food diet by itself didn’t work, I needed other support as well to heal the gut.

I am off any long term chemical supplementation Testosterone & Thyroid which is great! This will take time, I figure a year or maybe two. I noticed any stressful events send me spiraling into a depression. Almost Biopolar symptoms, which is still autoimmune related. So I was told to stay the course…

I could add more but in the effort of time have to cut this short.

If you have any questions, please ask.

And remember this is my protocol, what you may be experiencing may be altogether different.

 

[EverSinceMono]

Nate and all others, another huge update... While the previous protocol seemed to help in the beginning, it was short lived... However I FINALLY found out what the problem is! I was being treated for it in the very early beginning, but from what I understand it is tricky to deal with as too much supplements and or the wrong ones at the wrong time will make you crash & not recover... I have been on this new protocol now for about 8 weeks and doing great! My situation is called ADRENAL FATIGUE/INSUFFICIENCY I over worked myself and found a MD who know about this situation and how to deal with it, weekly monitoring by phone to make adjustments.... see dub dub dub.drlam.com read the articles in the public section... the one that made sense to me is "Adrenal Crash and Recovery Cycle" Dr. Lam has helped me a ton! we had to slowly switch of the other supplements and go on the right ones at the right times. truly amazing.... read up on it. Good Luck!

 

[Nate92]

Nate and all others, another huge update... While the previous protocol seemed to help in the beginning, it was short lived... However I FINALLY found out what the problem is! I was being treated for it in the very early beginning, but from what I understand it is tricky to deal with as too much supplements and or the wrong ones at the wrong time will make you crash & not recover... I have been on this new protocol now for about 8 weeks and doing great! My situation is called ADRENAL FATIGUE/INSUFFICIENCY I over worked myself and found a MD who know about this situation and how to deal with it, weekly monitoring by phone to make adjustments.... see dub dub dub.drlam.com read the articles in the public section... the one that made sense to me is "Adrenal Crash and Recovery Cycle" Dr. Lam has helped me a ton! we had to slowly switch of the other supplements and go on the right ones at the right times. truly amazing.... read up on it. Good Luck!

Hey EverySinceMono: I'm glad to know everything is going well with you. It's great that you feel like you have an idea of what's wrong with you, but I wouldn't put all your eggs into one basket with Adrenal Fatigue. I came across Adrenal Fatigue months back with hopes that it could be the problem. As you know, Adrenal Fatigue isn't accepted in the medical field yet. It could be in the future but isn't know, which is something to keep in mind. I have seen some very good doctors, whom have rejected the theory altogether. And after all, when it comes down to it, the treatment for Adrenal Fatigue is just good lifestyle changes that should make anyone feel better.

I get that it's hard, something Dick Head Jim above doesn't seem to understand, but you don't want to focus on JUST lifestyle changes and a diagnosis that we don't know is real or not, when you could be suffering from something that we know is real. Keep taking this Adrenal Fatigue route, yes, but also keep your eyes open for other possibilities.

Are you still gluten-free? Has that been helping?

Also in your first post, you said testosterone supplementation and thyroid medication hurt you. Why?

 

[CensoredBoardsSuck]

Nate and all others, another huge update... While the previous protocol seemed to help in the beginning, it was short lived... However I FINALLY found out what the problem is! I was being treated for it in the very early beginning, but from what I understand it is tricky to deal with as too much supplements and or the wrong ones at the wrong time will make you crash & not recover... I have been on this new protocol now for about 8 weeks and doing great! My situation is called ADRENAL FATIGUE/INSUFFICIENCY I over worked myself and found a MD who know about this situation and how to deal with it, weekly monitoring by phone to make adjustments.... see dub dub dub.drlam.com read the articles in the public section... the one that made sense to me is "Adrenal Crash and Recovery Cycle" Dr. Lam has helped me a ton! we had to slowly switch of the other supplements and go on the right ones at the right times. truly amazing.... read up on it. Good Luck!

 

[Dr JIM]

Where ever there is a sucker there is a suckeee!!!!!