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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. B

    Create your own Infared Sauna for cheap

    @amaru7 I used New Chapter Mineral Food Complex (dose on the bottle) and trace mineral drops. These did help (wasn't light headed and no "wiped out" feeling afterwards).
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    Create your own Infared Sauna for cheap

    I have used an IR sauna for years. When I first got it, I was advised by my physician to add the near infrared lamps. These are easy to purchase at most home stores (I bought mine at Home Depot). I was able to get the bulbs and also the lamps to hold them (these were called "brooder" lamps at...
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    Byron White Formulas-Wayne Anderson's Guidebook

    I began using the BW formulas in the past couple of months. I started with the EB-H6 formula without too much response. I worked up to the full dose fairly quickly, and went through a couple of bottles. Didn't notice much at any time on this one, so stopped. Recently began the A-L complex...
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    Earthing....Your experience....

    Also, anyone who has used a sheet, do the "earthing threads" last through many washings? I am looking for the best buy (sheet vs. pad) in terms of money spent.
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    Anatabloc - any info?

    I have used this for several months (dose of 4 per day). Didn't feel any noticeable effects, either initially or later, but my recent labs indicate decreasing inflammation (at least according to the c4a results that my doc reported). Apparently, the c4a is now in the midrange. I am feeling...
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    Inhibitory role of cholinergic system mediated via alpha7 nicotinic acetylcholine receptor in LPS-in

    Not sure if it is activating the same receptors as what is being discussed, but there is an anti-inflamatory product made from tobacco that inhibits NFkb. It's called anatabine (sold as Anatabloc). Note that it does contain vitamin A and D in the formulation (just a caution for those who are...
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    does a fractured bone make the cfs symptoms worse?

    Hi Carrie-Louise. My leg was broken just below the knee a few years ago. I didn't experience a flare, however, because I wasn't able to bear any weight on the leg for 10 weeks (to prevent further breakage and then surgical repair) my activity level was less. I think that because I reduced my...
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    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Looks like we are using different brands of the monolaurin as your instructions are a bit different from those on my container. My experience has been that it takes a long, long time to see results from the antibacterials/antivirals. For me this has meant weeks/months, not days. I am not yet...
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    Researched Nutritionals - ATP Fuel or NT Factor Energy

    The jar that I have says to take it with meals, and that's how I have always taken it. Don't take it with hot liquids (for example hot coffee or tea), so I usually take it as far apart from a hot beverage as I can during the meal (I take the Lauricidin first, then just after eating, I drink the...
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    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Hi Stefny, You mentioned having started the Lauricidin recently. My experience was that I had to start very slowly (a few pellets) with Lauricidin at first, as it caused some die off symptoms, and subsequently increased my fatigue. My doctor wanted me on this because he felt that it was a good...
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    Chlorella allergy?

    I tried to find the sites that had info about chlorella, but only able to get this one source: www.diagnose-me.com/treatment/chlorella.html I had previously read about a great percentage of people with ME who lack the enzyme to digest chlorella. The site listed above (not sure they're really...
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    How to Make Liposomal Vitamin C

    I did feel it was helping, however, I try to not overtake my ability to manage the herx symptoms as I take a slow but steady approach. I don't get cold like symptoms, just increased fatigue and headaches and less functionality because of the fatigue. Even with the smaller doses of one teaspoon...
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    How to Make Liposomal Vitamin C

    Hi Danny, I've made the liposomal C several times. It was fairly easy, after a bit of research into the process (I started with the video posted above, then went to the yahoo health group on liposomal vitamin c). I used the lipo C for a few weeks, but had to use very small doses, as I was very...
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    In Memory of Rich Van Konynenburg.

    I too am one of the many who was helped immensely by Rich's work. He tirelessly advocated for us all, and generously offered his theory to the medical community to better help those with this illness. We have been so fortunate to have benefited from his generosity. Rich was gracious in all...
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    Supportive Therapies while Detoxing/Chelating

    Yes, I felt that due to my reaction from the soaks, that it would be best to cover all bases and take the mulit mineral (this has regular minerals like potassium, molybdenum, chromium, manganese, selenium, zinc, iodine, phosphorus, etc. although some of these are indeed trace minerals...
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    Supportive Therapies while Detoxing/Chelating

    Hi Christopher, When I began using epsom salt baths for detox I experienced that "hit by a truck" feeling after. I was seeing a naturopath at the time, and she felt this was mineral depletion from sweating and recommended that I take minerals before the soak in the hot bath. I did this (using...
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    nk function increased 5 months after immunovir use stopped

    Just wondering if there are any other meds that can't be taken with this. I read that there are few interactions, so were the restrictions that were listed from the ME/CFS study just for control purposes? My main question would be antibiotics, plaquenil, or natural (very low dose) hydrocortisone...
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    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I certainly don't have any hair loss since starting on gcmaf injections (20ng) 2 months ago. I have what seems to be a vascular decrease (maybe due to inflamation in the blood vessels?) in my legs (feels like achiness). This starts on day 2 and goes on through day 4 or so, diminishing until the...
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    Do you take Boron with vitamin D?

    Hi Ocean, This is an interesting question. I supplemented with boron as it was recommended to increase bone density, and I have had osteoporosis since my mid forties. I had read that osteoporosis is often found in people with ME/CFS. I was unaware that boron raised estrogen levels when I was...
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    Hospitalization and CFS/FM

    I recently had day surgery for a detached retina. I was given propofal (they use this just during the initial 30 minutes when they need to administer the local anesthesia), and was very surprised that I came out of the surgery fairly well. I was functioning well in recovery, and didn't have too...
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    MAF 878 Available - Anyone already using it?

    I have a friend who makes her own yogurt using just a foam type ice chest that they have placed a light bulb into. I keep wondering if this could be done using just a night light bulb of say, 4 watts. May be worth a try.
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    anyone else dealing with osteopenia / osteoporosis?

    Hello November Girl. I too have osteoporosis (since the age of 42). I initially thought I'd try fosamax, and used it daily (at the time it was administered in a daily pill, as they hadn't yet come up with the weekly dose). After 6 months on the fosamax, my bone density did not change, and I then...
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    Poor pancreatic function

    I had not known that Creon can cause toxicity after extended use. Is this also true for other brands of prescription pancreatic enzymes? This would certainly concern me as I have been using Pancreaze for a long time now. Prior to switching to this rx, I used Designs For Health Digestzymes and...
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    Fried food 'fine for heart' if cooked with olive oil

    Hello Bob, Don't want to be a Debbie Downer but had to respond... While olive oil may not be bad for the heart, if you are using high temperature to fry (as opposed to sauteeing at low temp) it is considered very unhealthy to heat olive oil to high temperatures as this creates an abundance of...
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    Feel better on Prednisone?

    Hello Nielk, I am not sure that this will be helpful, as it's not comparing apples to apples, but fwiw, I have taken a product called Isocort. This was recommended by an integrative medicine doctor, and I was told it is a natural form of hydorcortisone. The bottle says its "fermented plant...
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    induced folate deficiency and paradoxical folate deficiency, is it the same thing?

    This is interesting because I would assume that if one could not tolerate folinic acid, then you would have equal problems with the folinic acid in many green vegetables. I eat boatloads of greens, including the leafy greens like kale and chard which are supposed to have lots of folinic acid...
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    Folinic acid made me feel poisoned and terrible - any idea why?

    I too have a pretty bad reaction to folinic acid. Mainly it tends to build up as I continue the dose over a period of several days (usually I have gone with just a small portion of the pill, say 1/16th or so). I get terrible fatigue, difficulty with sleeping, malaise, etc. I have no problem...
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    Gaining Muscle and Coordination on regimen

    Interesting list, Charles. Do you have any problems with the sodium ascorbate? I have been advised to take high doses by my doc, but have lots of intestinal rumbling (also seem to remember bloating) when I get over just a few grams (say 4 or so). I have easily been able to take buffered vitamin...
  29. B

    Nexavir and PERVs.

    Glad to see some discussion on this question, as I have mulled over this issue when taking prescription digestive ezymes, which are derived from porcine pancreatic glandulars.
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    started on NADH (B3) and Magnesium - getting hot flushes

    Wow, thanks for the heads up about NADH, I had no idea that it was a form of B3! It sounds like you had quite a flush, I know the one time I tried regular niacin, I felt as if my head was going to explode, and my skin was on fire. I never tried it again.