Hi, Andrew.
Your experience prior to the onset of your illness and your list of symptoms correspond very well to ME, in my opinion. It sounds as though you had an infectious onset. Perhaps your resistance was down, and you got an infection, perhaps with Chlamydia or mycoplasma, given that it was a chest infection. Have you been tested for them? As your immune system attempted to combat the infection, perhaps your glutathione became depleted. According to the glutathione depletion--methylation cycle block hypothesis for ME, if glutathione becomes depleted in a person who has inherited the genomic predisposition, this results in a functional B12 deficiency, which in turn causes a partial block in the methylation cycle, followed by draining of folates from the cells. This develops into a vicious circle mechanism, and that is what makes ME a chronic disease.
If this is what has gone on in your case, here are the explanations for the symptoms you reported:
Debilitating Fatigue--The glutathione depletion and methylation deficit cause dysfunction of the mitochondria, and the resulting lowered rate of production of ATP results in fatigue.
Running hot/cold. worse at night--The hypothalamus suffers from glutathione depletion and loses its ability to properly control the body temperature. The ongoing infection causes cytokine-induced fever. Low total blood volume makes it difficult to regulate heat loss via the skin.
Pain in odd areas--The nervous system is also affected by the glutathione depletion.
Joint ache--This may result from the infectious agent.
Muscle ache, mainly arms and legs--Again, both the muscles and the nerves are impacted by glutathione depletion.
Difficulty breathing--The muscles used in breathing suffer from the mito dysfunction, which is caused by the glutathione depletion and methylation deficit.
Muscle twitching, arms and legs--Likely due to low intracellular magnesium, caused by glutathione depletion which lowers ATP supply to the membrane ion pumps.
Confusion and poor memory--The brain is impacted in several ways. This likely involves the hippocampus.
Feeling sick, no appietite--Cytokines likely cause the sick feeling. The digestive system is impacted in several ways. Low stomach acid production and resulting low motility likely causes the loss of appetite. Mito dysfunction in the parietal cells likely causes the low stomach acid production.
Headaches--Several possible factors. Blood flow to the brain is usually lowered.
Numb feet and hands--Likely due to the functional B12 deficiency.
Cant tolerate any alcohol drinks, brings on fatigue--Ethanol worsens the oxidative stress that is present because of the glutahione depletion. It also worsens hypoglycemia and lactic acidosis that results from the anaerobic nature of the metabolism when glutathione is depleted.
Sore throat, feels like my throat is swollen sometimes--Likely due to the ongoing infection and efforts by the immune system to combat it. The immune system is unsuccessful, because it is dysfunctional as a result of glutathione depletion and draining of the folates from the cells. This is particularly important for viruses and for intracellular bacteria, such as Chlamydia and mycoplasma, which require a Th1 immune response.
unpleasent trying to swallow--Ditto.
Over sensitive to bright lights, not everyday, mostly when ive had a very restless day/night before--Likely due to excitotoxicity, in turn due to glutathione depletion.
My eyes seems 'dry' if that makes any sense?--Due to low total blood volume, which in turn is due to low secretion of antidiuretic hormone producing diabetes insipidus (not to be confused with diabetes mellitus), in turn caused by glutathione depletion in the hypothalamus/pituitary.
Constipation/Diarrhea, let me explain this one, i'll be unable to go to the toilet much for say two, even three weeks,
and then it'll reverse itself and i'll be having to go all the time--This is irritable bowel syndrome (IBS). The gut is impacted in several ways by the vicious cycle described above, and most people with ME have problems with their digestive system as a result.
Voice pitch change, to me it sounds like ive got a sore throat, to others, they say my voice has gone higher in pitch, this is mostly,
but not always, when i have a sore or swallon feeling in my throat--Again, I think this is due to the ongoing infection and the immune system's unsuccessful response to it.
Cant be around people smoking, it seems to make me feel more fatigued--The detox system is dysfunctional because of the vicious circle. Inhaling smoke brings in toxins.
Ive noticed my hands and feet are often 'white' looking, and when im really ill like now and the past four weeks i get very pale in the face--Low total blood volume, as discussed earlier.
Loud noise unsettles me, its a strange feeling but i get easily jolted now, odd given that i was a music promoter and have been to literally
thousands of shows over the last 14 years--Again, excitotoxicity.
Depression, this is due to being stuck in the house and my bed. I know it is, because when im able to go out i dont feel depressed at all.--Right on.
Panic Attacks, mainly in cars, the speed and movement seems to cause this, as if i cant see out the windows, its not so bad.--Due to excessive production of epinephrine (adrenaline). The dysfunction of the HPA axis causes low secretion of cortisol, and epinephrine rises in an effort to compensate, but produces side effects, including panic reactions.
So I think this explanation is consistent with what you are experiencing. There is a test panel that will tell whether you have this vicious circle mechanism going on, called the methylation pathways panel. Unfortunately it is a specialty panel, not a conventional one, and it is available in Europe only at the European Laboratory of Nutrients in the Netherlands and in the U.S. at the Health Diagnostics and Research Institute in New Jersey.
If this vicious circle is present, there are several methylation cycle treatments being used that can be helpful. The protocol I have suggested is pasted below.
I hope this is helpful.
Best regards,
Rich
March 30. 2011
SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROMEMarch 30, 2011 Revision
Rich Van Konynenburg. Ph.D.
(Based on the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])
SUPPLEMENTS
1. General Vitamin Neurological Health Formula [2]: Start with tablet and increase dosage as tolerated to 2 tablets daily
2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily
3. MethylMate B [4]: 3 drops under the tongue daily
4. Folinic acid [5]: capsule daily
5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)
All these supplements can be obtained from
http://www.holisticheal.com.
The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.
Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from
http://www.holisticheal.com.
For those allergic to soy, lecithin from other sources is available.
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.
[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from
http://www.holisticheal.com or Amazon.
[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.
[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.
[5] Folinic acid is 5-formyltetrahydrofolate. capsule is a dosage of 200 mcg.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.
[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.
you could PM me your landline number and we could talk on the phone.
