Home Remedies and Supplements to Treat PNH
"Paroxysmal nocturnal hemoglobinuria (PNH), sometimes referred to as Marchiafava-Micheli syndrome, is a rare, acquired, potentially life-threatening disease of the blood characterised by complement-induced hemolytic anemia (anemia due to destruction of red blood cells in the bloodstream), red urine (due to the appearance of hemoglobin in the urine) and thrombosis. PNH is the only hemolytic anemia caused by an acquired (rather than inherited) intrinsic defect in the cell membrane (deficiency of glycophosphatidylinositol leading to absence of protective proteins on the membrane). It may develop on its own ("primary PNH") or in the context of other bone marrow disorders such as aplastic anemia ("secondary PNH").
Treatment is usually supportive (blood transfusion for anemia, anticoagulation for thrombosis), although the monoclonal antibody eculizumab (Soliris) is being used to treat some cases." (Wikipedia)
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08/15/2007: Linda from Grand Central Florida, U.S.: "My friend's son has been plagued with Paroxysmal nocturnal hemoglobinuria (PNH) for a few years. He has had SEVERAL transfusions, predizone and is also taking some VERY EXPENSIVE medicine (Z-something). What do you feel we can do to help his turn this terrible disease around? I love this site so much! I've used many of the remedies myself and with great success! I feel better than I have in years. Thanks so much for you efforts and I look forward to hearing from you concerning PNH. Regards!"
Ted from Bangkok, Thailand replies: "Dear Linda: While present literature is relatively sparse on the exact cause of it, certain remedies would reduce the possibility of symptoms common whenever peroxysmal nocturnal hemoglobunuria (PNH )occurs. The disease seems to be relatively rare as well.
At present literature denies the possibility of acidosis as being partly to blame in causing somewhat bloody urine overnight. My own experience has shown that acidosis generally occurs during the night, which leads to various kinds of sickness, not just worsening the condition of PNH. This means the use of the remedy of akalizing such as a lemon and bicarbonate remedy or just the use of baking soda as a possibilility of reducing nocturnal acidosis. One simple way people can prove to themselves whether acidosis can worsen this condition is simply to measure the urinary pH. If the urinary pH is below 6.0 for this condition, it is at least a feasible option to get the urine pH up using the lemon (lime) bicarbonate remedy to a pH of at least neutral 7 pH. The blood pH works optimally in 7.35 and if the body's ability to maintain pH alkalinity is impaired, then the blood cells do get destroyed in an acid medium since it is below normal pH parameters. I would very likely to at least take a minimum of 1/2 teaspoon of baking soda twice a day in 1/2 glass of water (once in the morning and once before bedtme) if I managed to obtain or prove that the urinary pH is indeed below 6.5 and raise them generally closer to 7. If those generally improved my condition (assuming red urine is reduced), I may at least advanced myself to a more effective ways of raising my pH closer to 7 or perhaps closer to 7.35 (by varying the dose and using a more effective alkalizing remedy of baking soda and lime, where the usual remedy is at least 8 teaspoon of lime (approx one whole lime) plus 1/2 teaspoon of baking soda in 1/2 glass of water, taken on an empty stomach, once in the morning and once before bedtime.
The other condition is the cause of lysis of red blood cells, which also tend to happen to some extent with lupus, where certain kinds of mycobacterium attacks the red blood cells and causing its destruction, where autoimmunity is shown. Although parasites can do that just the same, however borax remedy generally kills most of them anyway.
My own experience of autoimmunity has really never been demonstrated that the body did indeed attack itself, such as red blood cells, but appears to be a deeper form (which exists) in the mycobacterium initiating such autoimmunity. In which case a simple 1/8 teaspoon or 1/4 teaspoon of borax in one liter drinking of water at least one a week should result in some improvement as borax (or actually the boron components) are antifungal in nature. It should be noted that a virus can alter genetic makeup and become foreign cells too, but a fungus organism can attach to healthy cells causing the white blood cells to attack the cells as they also appear foreign just the same. So my idea is mycobacterium, parasites or viral reduction is a more realistic way of dealing with the problems.
The third common feature is the tendency of thrombosis to initiate red blood cells destruction too, but present literature indicates it is the PNH to cause thrombosis, my own experience with has been that whenever the body's antioxidant level (as measured by the Oxidation Reduction potential) when checking for urine is somewhat oxidizing in nature which leads to premature destruction of red blood cells.
One remedy I have found to work rather well against thrombosis (such as deep vein thrombosis) is some sodium ascorbate vitamin C with some baking soda in 1/2 glass of water. You always need to dilute anything in water to 1 glass ideally, but for some people who do have problems drinking too much water, 1/2 is the minimum. Vitamin C sodium ascorbate is seen to be about 1000 mg dissolved in a glass of water, plus 1/8 teaspoon of baking soda to raise the body's antioxidant level. One way to easily prove whether has something to do with it is to at least get a cheap pocket Oxidation Reduction Potential Meter and measure the urine, usually first thing in the morning. The millivolts readings should be -100, or below (such as -120). If the readings were above -50 (my own experience) then the body level of antioxidant is relatively low.
Finally, a condition that I have seen of red blood cell destruction had some links to heavy metals (this has been more common feature) that leads to at least worsening of condition. A simple remedy is of course chinese parsley (cilantro). If a heavy metal does indeed confirm to a high level using hair mineral analysis, then the remedy is taking only twice or three times a week and not too much. A negative reaction to taking too much of chinese parsley (such as a handful) usually (my experience!) confirms heavy metals in the body. To reduce excess buildup, I would likely to take only a small amount of it and slowly increase the dose as the body's negative reaction reduces as the body goes into detoxification. The schedule appears to be once every two days such as Monday, I take a couple of leaves, then I take it again two days later, such as Wednesday, then again Friday, and so once every two days should not overload the body with too much detoxification and reduce the heavy metals leading to blood cell destruction. Other helpful remedies against heavy metals and certain organisms causing such is artemisia, but those should relatively be taking on relatively low dose, but since I can't find this locally, to do experiments with it, this can be left out until some improvements from chinese parsley is seen.
As for final remedy to raise antioxidants is the one drop of clove oil in one liter of water well shaken (can be mixed with the borax and other things) as clove oil is relatively powerful antioxidant and could help the condition as well as clove oil has the highest ORAC (oxygen resorption absorbance capacity) in any natural remedy. I have used this in the past to recover myself against chronic fatigue and other conditions also."