Part Three: Going my Own Way….

People who have been following this blog will probably come to tell by the style of my writing that I am not at all depressed. My condition is not remotely psychological and nor am I open to psychosocial therapies as a means of ‘tried and tested’ treatments.

I don’t oppose the fact that any disease affects our spiritual being – I have changed as a person from being so sick but I firmly believe and have evidence, that my body is what is broken, not my mind. I remain more strong willed than ever.

I also am curious to what ails me from a medical perspective. I categorise my illness into two parts: the immunology and the fatigue.

Why I suffer such severe infections when others do not pick up so much as a cold or sniffle?

Why do I get plagued with really severe infections in my biliary system and liver, rendering me constantly vomiting and in agonising pain, unable to eat proper meals nor digest the foods I love.

If I shave my legs, one part will get infected. If I leave the house for even a millisecond, I will catch a bug.

The second I come off antibiotics all the bugs come flooding in, all at once.

I am on Augmentin permanently at the moment and have been for over a year now. If I start to come off it, my biliary tract will then get infected and I become incredibly ill, fever, pale and clammy, unable to move.

I daren’t come off the antibiotics as I have no quality of life without them. Nobody has told me why.

I was told that one can have an autoimmune condition with a subclass deficiency as well, so it appeared that my immune system was both ramped up and attacking itself at the same time. One doctor suggested I have autoimmune hepatitis and am currently going down the long road of Heptology – ERCP’s, possibly a liver biopsy. This part scares me, I have seen the effects of serious liver disease and the thought of needing a transplant scares the life out of me. But it is possible.

What is fatigue? Why I am permanently exhausted?

The ATP test results have already shown I have free radical damage, cellular damage and severe B3 deficiency. I tried taking a multi-B Vitamin Complex for around three months and it did nothing. Why, I wondered, when all the ME experts recommend B Vitamins.

Then a friend pointed me to the direction of Rich Van Konynenburg, Ph.D and his work on the Methylation Cycle.

THE METHYLATION CYCLE

“What is the Methylation Cycle, and What Does it do?”

The methylation cycle is part of the basic biochemistry of the body, and is believed to operate in every cell. This cycle includes the amino acid methionine as well as S-adenosylmethionine (SAMe, used as a supplement by some PWCs), S-adenosylhomocysteine, and homocysteine. Some homocysteine is converted back to methionine, thus completing the cycle. There are two parallel pathways from homocysteine to methionine. They are the methionine synthase pathway and the BHMT (betaine homocysteine methionine transferase) pathway. The methylation cycle is directly linked to the folate metabolism and to the transsulfuration pathway.

The methylation cycle performs many vital roles in the body. First, by means of SAMe, it supplies methyl (CH3) groups to many different biochemical reactions. Some of them produce substances such as coenzyme Q-10 and carnitine, which have been found to be depleted in many PWCs. Methylation also plays an important role in “silencing” certain DNA to prevent its expression, and in producing myelin for the brain and nervous system.

The methylation cycle also controls the body’s response to oxidative stress, by governing how much homocysteine is diverted into the transsulfuration pathway, which contributes to determining the rate of synthesis of glutathione.

A third important role of the methylation cycle is to control the overall sulfur metabolism of the body. In this role, besides controlling glutathione synthesis, it exerts control over synthesis of several other important substances, including cysteine, taurine and sulfate.

When the methylation cycle is blocked at the enzyme methionine synthase, these important roles are not carried out properly. In addition, a methylation cycle block necessarily causes a block in the folate metabolism, to which it is intimately linked, and this interferes with synthesis of new DNA and RNA, among other important effects.

Two of the most significant effects of a methylation cycle block are that neither the immune system nor the detox system can operate properly. If the methylation cycle remains blocked for an extended period of time, infections and toxins can be expected to build up in the body.

Now herein lies the problem. There is a complete protocol for this which you can find here…. http://www.ei-resource.org/articles/chronic-fatigue-syndrome-articles/simple-methylation-treatment-protocol-for-chronic-fatigue-syndrome/

But as the entire protocol relies upon low glutathione levels – and mine were significantly raised, I could not embark on methylation.

I was told by Van Konynenburg that raised glutathione was extremely rare, so much so in fact that low glutathione levels were suggested to be a biomarker for M.E. I began wondering if I even had M.E or not.

I refused to let that put me off and wondered if perhaps I could take part of the protocol, perhaps Intrinsic/B12/folate and would this be beneficial?

I wondered what the difference was between this and the Holland and Barratt B Vitamins in the cupboard.

 B Vitamins in their active forms are these:

 

  • Cobalamin (B12): Methylcobalamin; Adenosylcobalamin
  • Choline: Phosphatydlcholine
  • Folic acid: Folinic acid; 5-methyl tetrahydrofolate
  • Niacin (B3): Nicotinamide (adenine dinucleotide)
  • Pantothenic acid (B5): Pantethine
  • Pyridoxine (B6): Pyridoxal-5-phosphate
  • Riboflavin (B2): Riboflavin-5-phosphate; Flavin mononucleotide (FMN)
  • Thiamine (B1): Thiamine pyrophosphate; Thiamine triphosphate
  • Riboflavin (B2): Riboflavin-5-phosphate; Flavin mononucleotide (FMN)

 These are called ‘Co Enzymes’. Of course I had heard of Co-Enzyme Q-10 but found out about something called NADH – a Co Enzyme form of B3.

NADH, through a series of reactions with acetyl and oxygen, is able to produce energy. This energy is in the form of ATP (adenosine triphosphate). Therefore, a good supply optimizes energy production in the body. A small number of short term studies done with an oral form of NADH have shown slight to moderate benefits in regards to depression, Parkinson’s disease and Alzheimer’s disease. An eight-week double blind study done at Georgetown University Medical Center found thirty percent of patients with chronic fatigue syndrome to benefit from 10 mg of NADH compared to eight percent of the controls. Birkmayer Laboratories of Vienna, Austria who organized all of these studies, are also involved in promoting their trademarked NADH product.

Sounded too good to be true, so I tried it. It costs about 30 dollars for a two month supply.

Why was this drug supposed to be so good? I read some more and discovered that helping the mitochondria produce energy is a complicated thing – especially if one’s ATP is shot to pieces. There is more than one piece to the puzzle so I carried on reading and researching. If NADH is a coenzyme, meaning it helps enzymes in your body break down food and convert it to energy in the form of adenosine triphosphate (ATP), which studies show is sometimes deficient in people with fibromyalgia or chronic fatigue syndrome, what about Co-Q10?

Basically, Energy givers, B Complex vitamins, NADH and Coenzyme Q10 all  help participate in the formation of ATP energy packets. Combined with carnitine and branched chain amino acids – these are often very useful treatments for M.E.

From Sarah Myhill’s Website:

Energy to the body is supplied by mitochondria, which firstly produce NAD (nicotinamide adenosine diphosphate) from Kreb’s citric acid cycle and this is used to power oxidative phosphorylation which generates ATP (adenosine triphosphate). These molecules are the “currency” of energy in the body. Almost all energy requiring processes in the body have to be “paid for” with NAD and ATP, but largely ATP. The reserves of ATP in cells are very small. At any one moment in heart muscle cells there is only enough ATP to last about ten contractions. Thus the mitochondria have to be extremely good at re-cycling ATP to keep the cell constantly supplied with energy.

If the cell is not very efficient at re-cycling ATP, then the cell runs out of energy very quickly and this causes the symptoms of weakness and poor stamina. The cell literally has to “hibernate” and wait until more ATP has been manufactured.

In producing energy, ATP (three phosphates) is converted into ADP (two phosphates) and ADP is re-cycled back through mitochondria to produce ATP. However, if the cell is pushed (ie stressed) when there is no ATP about, then it will start to use ADP instead. The body can create energy from ADP to AMP (one phosphate), but the trouble is that AMP cannot be re-cycled. The only way that ADP can be regenerated is by making from fresh ingredients, but this takes days to do. This explains the delayed fatigue seen in chronic fatigue syndrome.

So by taking Co-Q10 and NADH, I am helping my body produce ATP?

I found a product which contained NADH with D-Ribose. I will get to the effects of it later on. D-Ribose is a simple carbon sugar – it provides the key foundation for building ATP and is critical to energy recovery.

What about all that cell damage and free radicals?

I started taking Alpha Lipoic acid in a combined supplement with Co-Q10, NAD and other activated B Vitamins.

Alpha-lipoic acid is an antioxidant that is made by the body and is found in every cell, where it helps turn glucose into energy. Antioxidants attack “free radicals,” waste products created when the body turns food into energy. Free radicals cause harmful chemical reactions that can damage cells in the body, making it harder for the body to fight off infections. They also damage organs and tissues.

The proverbial icing on the cake came in the form of a small, unusual mountainous plant called Rhodiola, which I stumbled upon after reading some herbal based treatment articles.

In Europe and Latin America you may see it spelled rodiola and rodiola rosea (without the ‘h’). In traditional Chinese medicine, where it has been used extensively, it is referred to as hóng j?ng ti?n.

Rhodiola modulates cortisol production during times of physical or emotional duress. Cortisol is a steroid hormone and it is often called the stress hormone. Our adrenal glands produce cortisol to help us cope with stressful situations. Unfortunately, sometimes our body produces too much cortisol, or if we experience chronic stress our body produces cortisol too often, even in times when we don’t really need it.

Since cortisol suppresses our immune system, counteracts insulin and metabolizes proteins, fats and carbohydrates, too much cortisol may amplify these basic functions and produce detrimental problems. Rhodiola rosea acts as a mild cortisol modulator, helping our bodies reduce the repercussions of excessive cortisol release by our adrenal glands.

Rhodiola is also a serotonin optimiser and gives the body energy.

At this point I was told only more exercise would make me better so after being so very ill and researching these supplements, I devised my own protocol. Please bear in mind when reading this that I am merely a researcher through the means of being a patient advocate, having to find my own path where others would place barriers. This blog is in no way a means of giving medical information or offering a cure – it is merely my story.

X1 Now Foods 10mg NADH with 200mg D-Ribose

X1 Now Foods Co-Enzyme B-Complex with 500mcg Q10 and 50mg Alpha Lipoic Acid.

X2 500mg Rhodiola

Results

This combination of supplements has enabled me to get a certain quality of life back. Before I started it, I was bedbound, I could barely raise my head off the pillow and would never leave the house.

Slowly I was having increasing amounts of energy. The time it took between getting showered and dressed then crashing was becoming greater, I could do more in my slots. I still exist within four hour windows, that I can undertake certain light activities such as going to one shop (I can never cope with more than one shop) or going on my computer without getting exhausted after half an hour. I can go for longer but need to crash within four hours, whereas it used to be about half to one hour. I am able now to manage a short walk once a week or get up and potter around the garden for a bit whereas before I was chained inside. Once I’ve rested I am able to undertake activity again whereas before once I’d slept and awoken again I felt incredibly ill. That feeling of being in a ‘fog’ and having a crushing weight on your body is still very bad but not as painful as it used to be.

Now I am able to get dressed by myself, have a shower everyday and undertake occasional light activities, perhaps one a week on a good patch.

So it appears that my fatigue is being caused by mitochondrial dysfunction – now I’ve got that sussed, what about my immunity and constant viral load?

Sadly there isn’t a lot they can do for that.

I still get outbreaks of Shingles and random viral symptoms, like now for instance where my temperature goes up, I shiver and shake and feel like I have the flu.

I know I am HHV6 positive – more information on this can be found here…….http://www.hhv-6foundation.org/ Which means the virus is constantly reactivating in my body.

When a secondary factor hits me, like a bacterial infection, stress, bug, my viral load will increase and I will feel like death. This is what I call “crash” mode where my body is infected with something and my cytokines go crazy.

The viral supplements I take help but only when I am in a good patch. Before, I used to feel viral and fluey all day, every day, 24 hours a day with no refrain, no break from symptoms. When I am uninfected the herbs I take help lessen that feeling but they do not and cannot prevent a crash, like most things with M.E there is no magic bullet.

I have read about Astragalus and like Rhodiola, it has been used in Chinese herbal medicine for many years. I was interested about the research done using Astragalus on HIV patients. Astragalus membranaceus, or common name, Huang chi, huang qi, milk vetch, Radix astragali. works by stimulating several factors of the immune system. The polysaccharides potentiate the immune-mediated antitumor activity of interleukin-2 in vitro (13), improve the responses of lymphocytes from normal subjects and cancer patients, enhance the natural killer (NK) cell activity of normal subjects, and potentiate the activity of monocytes (14), increasing phagocytosis perhaps by regulating tumor necrosis factor (TNF) production (5). The saponins potentiate NK cell activity and restore steroid-inhibited NK cell activity in vitro. They also increase phagocytosis and demonstrate hepatoprotective effects on chemically-induced liver injury in vitro (6) and in vivo (4). Chinese studies suggest that astragalus, when used with angelica, has renal protective effects by mediating gene expression. Astragalus increases M-cholinergic receptor density in senile rats, suggesting that astragalus may have a role in combating brain senility (11). An herbal formula containing astragalus can reduce fatigue in athletes by increasing uptake and utility of oxygen (10).

On the site are links to some clinical trials with Astragalus….http://www.mskcc.org/cancer-care/herb/astragalus

There is also evidence Astragalus can help with HIV infection. One of the lead researchers in telomeres and HIV, Rita Effros, PhD, and her colleague Steven Russell Fauce, PhD, of the department of pathology at UCLA, had experimented with gene therapy as a way to keep telomeres from shortening. But ultimately the researchers turned to what could potentially be a much less expensive method: an extract from the medicinal plant astragalus.

According to Effros and Fauce, the extract, TAT2, keeps an enzyme called telomerase turned on. CD4s and CD8s can naturally produce telomerase, which helps keep telomeres from shortening, but only for so long. After a cell has divided too many times, the telomerase gene turns off.

In test tube experiments, Effros and Fauce exposed CD4 and CD8 cells collected from HIV-positive patients to TAT2. Not only did the substance slow the shortening of the cells’ telomeres, but it also increased the cells’ production of proteins known to inhibit HIV replication.

While studies of TAT2 have not yet been conducted in people, the authors believe the strategy “could be useful in treating HIV disease, as well as immunodeficiency and increased susceptibility to other viral infections associated with chronic diseases or aging.”

I take Now Foods Immune Renew which contains Astragalus and a wild mushroom  blend. Again, wild mushrooms have significant antiviral properties.

The benefits of Reishi mushrooms are as follows: analgesic, anti-allergic, bronchitis (preventative and regenerative), anti-inflammatory, antibacterial (Staphylococci, Streptococci and Bacillus Pneumoniae), antioxidant (again hydroxyl free radicals), antitumor, antiviral, lowers blood pressure, bone marrow nucleated cell proliferation enhancement, cardiotonic, central depressant and anticholinergic (relaxes muscles and reduces the effects of caffeine), natural killer cell enhancement, expectorant and antitussive, immunomodulatory, anti-HIV, adrenocortico function enhancement, interleukin 1 and 2 production increased, liver protective and detoxifying, prevents B monoamine oxidase effects, ionizing radiation protection, anti-ulcer, white blood cell and hematoglobin in peripheral blood increased.

A lot of M.E patient have an IgG subclass deficiency or IgA deficiency which can leave one feeling very unwell and susceptible to opportunistic infections. Like we don’t have enough to deal with having HHV6, possible retroviruses and bacteria’s in our blood.

I was refused intravenous immunoglobulin as my immunogloublins were not deemed to be low enough despite me suffering badly. There are things one can take to increase IgA/IgG levels so I looked into it and decided to start taking an immune factor with natural immunogloublins in, from Now Foods of course, Immune Advantage it is called.

I cannot say whether or not it has helped as I have been so ill with gallbladder disease I have not been on it long enough to ascertain whether or not my Ig has increased. I will be measuring my numbers again in a while so if this hasn’t worked it’s back to the doctor I go.

I still pick up bugs wherever I go and am severely immunodeficient but the moral of the story is that I have had no choice but to help myself, to go it alone. Whatever is causing my severe immune dysfunction, be it a gammaretrovirus or something else, I cannot fix this myself and I am suffering greatly. But what I have found has taken the edge off and enabled me to have  more quality of life than being bedbound – until modern medicine and research comes up with the answers – we are alone in the dark.

 

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