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TOPIC: ribose and mitochondria nutrients in cfs/me

Re:ribose and mitochondria nutrients in cfs/me 13 years 2 months ago #7

  • joey
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Hi Maff,
Thanks I will check out that article by Cheney.
I have had a saliva adrenal test done with Dr Myhill and it did indeed show that there were adrenal problems...I was on DHEA and low dose cortisol for a while but again no change.

How to detoxify the gut and the liver?? I don't know...it seems from reading more and more on this site that the key seems to be switching back from Th2 to Th1 immune function...and thta will clear up everything!! So I will probably be ordering some Transfer Factor, Glutathione patches and something for free radical mop up.

At Breakspear I have had tests for viruses, VEGF, Lymphocyte sensitivity...the only things that came back raised were the IgG for Chlamydia Pneumoniae. Then the 2,3-BPG was low with a raised BPG-mutase (whatever that is!)
I've also been seeing Dirk Budka at the Hale Clinic and actually just received results back from him. It's interesting that my blood tests show that the Beneficial bacteria and Additional Bacteria are all in normal range.
However my hydrogen breath test after ingesting Lactulose came back quite high!
The other things he found were normal DHEA and cortisol levels.
However the IgG for Cytomegalovirus was positive, my White Blood Cell count was raised and he found low Diaminoxidase activity...which is the enzyme that digests histamine.
His theory is that allergy to histamine due to this enzyme being poorly produced is the key to many bowel problems...who knows!!

Any advice for me from your experience considering all this?
Life is pretty shit and has been for years..it's the inability to relax even slightly that makes each day really difficult. Just stress, tension and brain fog...and as you know..that for a week can be dealt with...but for years...this longevity factor brings an added weight.

Cheers mate.
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Re:ribose and mitochondria nutrients in cfs/me 13 years 2 months ago #8

  • joey
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Maff,

I just re-read your post...just one more thing...how would you go about fixing the gut. I've spent a small fortune on Bio-Kult and other probiotics, prebiotics and I can't even remember what else...oh yeah Threelac etc. And again...nothing!! How did you go about doing so.

When the bowel is tense and sore I find it difficult digesting anything at all. But when I am less tense I can eat almost anything and have often gone months living on junk food (as that is what my mood craves to at least give some high-ish points to the day) without any overt reactions! I really haven't worked out the diet aspect at all in my condition! I was very strict for a long time and didn't seem to improve...I may try again though.<br /><br />Post edited by: joey, at: 2009/05/24 12:24
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Re:ribose and mitochondria nutrients in cfs/me 13 years 2 months ago #9

  • Maff
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I'm surprised you didn't get any benefit from the DHEA and cortisol, your symptoms really suggest this would be a key area to address. Of course, there is usually more than one possible reason you would experience a particular symptom or group of symptoms. One thing you could try is licorice which contains a compound called glycyrrhizin which can block the brakdown of cortisol and may also improve stress resistance through other mechanisms.

I'd also suggest you try using amino acid therapy to improve your mood and reduce stress. Phenylalanine and tyrosine are the precursors to the catecholamine neurotransmitters dopamine, adrenaline and noradrenaline, while 5-HTP is the precursor to serotonin. I'll particularly recommend N-acetyl-tyrosine - a more bioavailable form of tyrosine. I have also found a herbal preperation called Relora to be helpful, particularly for reducing stress and having a calming effect. High dose niacinamide is also a natural tranquiliser while epsom salt baths or footbaths are a highly effective way of getting magnesium into the system, which is also calming.

Important nutrients for aiding liver detoxification and combating oxidative stress include SAMe, N-acetyl-cysteine, and N-acetyl-carnitine. I've also found herbs that promote bile flow and production to be very helpful. These include milk thistle/silymarin, tribulus terrestris, dandelion, and celandine. The LifeWave glutathione patches seem like there is no way they could work on close inspection but all I can tell you is I have experienced significant symptoms that are associated with detox reactions when using them e.g. nausea, weakness, flu-like feelings. This occured the first few times I tried the patches and start again if I don't use them for a while then try again. Take from this what you will!

It seems shifting the immune response back towards Th1 might be an important approach in CFS. In theory a properly functioning immune system will aid detoxification as it is involved in disposing of waste material and prevents infectious agents proliferating and generating toxins and free radicals. Transfer factor seems to be a good choice and other supplements proposed to shift the immune response away from a Th2 bias include pine cone extract and the anti-viral drug isoprinosine. Given your positive test result for CMV I'd say this is an important area for you to look at. Isoprinosine and transfer factor should be particularly helpful.

I have taken transfer factor myself and found it increased my energy and also seemed to aid liver detoxification.

As far as my knowledge goes in this area, BPG-mutase is an enzyme involved in the synthesis and breakdown of 2,3 DPG - the enzyme required for the release of oxygen from red blood cells at the tissues. Low 2,3 BPG will therefore correlate with low 2,3 DPG and tissue hypoxia (lack of oxygen). The breathing technique Dr. Cheney recommends may therefore be helpful to you.

The conflicting test results you've had for both adrenal function and gut issues just highlight the fact lab tests can't be relied on in isolation. It's always best to use more than one testing approach and consider the results in relation to your symptoms. I'd be inclined to believe the lactulose test over any other for gut dysbiosis. Unfortunately I am still struggling to deal with my own gut problems. In theory we need use antimicrobials to kill pathogens, eat a low carb diet and ensure digestion is functioning efficiently to avoid feeding the pathogens, use probiotics to restore healthy microflora, and do everything possible to boost gut immunity. In practice this has proven to be easier said than done. I can't take the most powerful antifungal drugs as they are toxic to the liver and current probiotics are less than perfect; mainly due to low dosages having little impact on the many trillions of microorganisms in the gut, and also the fact that the bacteria in probiotic products mostly end up in the toilet bowl. I am now seriously considering a procedure known as a faecal transplant - yes it is what it sounds like! Faeces from a healthy individual contains beneficial bacteria that are able to permanently implant in the patients gut and restore balance to the microflora. This procedure has been used with great success in C. difficile infections and a few other conditions. Unfortunately I am having great trouble tracking down a doctor to carry it out.

What a coincidence that you have seen Dirk Budka. I am currently studying for a degree in nutritional therapy and Dirk was one of our lecturers this year. He discussed histamine intolerance and related issues such as DAO deficiency. I actually wrote a short blog entry about his work last month - Biogenic Amines and Histamine Intolerance . Histamine is a potent substance with wide-ranging effects in the body so if you have low DAO I'd recommend you follow the dietary advice to avoid sources of histamine - at least for a trial period to see if it helps at all.

Diet is very important and can be more effective than you might expect in reducing symptoms. As well as having a positive effect on your gut microflora, a low carb or low glycaemic inxed (GI) diet will also help to maintain stable blood sugar levels. Blood sugar levels that swing from one extreme to the other can produce all the symptoms you describe.

I hope this helps mate. It's hard to cover everything in sufficient detail without writing an essay length reply! Please get back to me with specific questions about any of this ;)<br /><br />Post edited by: Maff, at: 2009/05/24 15:33
If you are going through hell, keep going - Winston Churchill
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Re:ribose and mitochondria nutrients in cfs/me 13 years 2 months ago #10

  • ataraxy
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joey wrote:
How to detoxify the gut and the liver??

I think that the best thing that I've done to help my gut and liver to recover, was the Shoemaker protocol, with the exception that I used Colestid (active ingredient colestipol) rather than Questran (active ingredient cholestyramine) because I didn't want to all the additives that are in Questran.

This works because it binds to the bile produced by our livers (the liver dumps toxins into the bile) and so ensures that the toxins are removed from our bodies, rather than being reabsorbed as they pass through our damaged guts.

This means that you take a lot of stress off the liver because it doesn't have to constantly reprocess the toxins that are reabsorbed by the gut, and it also allows the gut to start to heal because it's not constantly under assault from the toxins that were previously being reabsorbed with the bile.
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Re:ribose and mitochondria nutrients in cfs/me 13 years 2 months ago #11

  • Maff
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Thanks for sharing your experiences ataraxy. It's good to hear that you are doing well on the Shoemaker Protocol :)

I'd just like to point out the importance of identifying the particular sources of toxins that are issues for you. For example, it's no point using drugs such as cholestyramine or colestipol if you have severe gut dysbiosis as you will constantly be absorbing new toxins produced by bacteria, yeast, and other microorganisms. Equally external sources of toxins such as those found in tobacco smoke, household cleaning products, and personal care products will be adding new toxins to your body.

It's therefore vital that all sources of toxins are identified and removed (as much as possible) before starting these drugs if the treatment is to be effective.
If you are going through hell, keep going - Winston Churchill
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