have u all heard of LONG WAVE UVA THERAPY??
have you heard of this? and if so, what are your thoughts? have you undergone this treatment? thanks
I know there is someone on the forum who is using this - I think it is Kelly, but not sure. Hopefully she will see the post and chime in.
thans marycain!! hopefully she sees the post
UVA 1 light therapy
Just checking the forum now. I have used UVA-1 light therapy and would love to share my thoughts on it. ALthough they are a bit murky. I read the book Lupus Underground by Anthony DeBartolo. He is a reporter with Lupus who swears by the therapy. He found out about it through a doctor in New Orleans Hugh McGrath who has been researching UVA-1 for years.
Here it is in a nutshell: UVA-1 lessens the severity of fatigue associated with lupus and in some cases eases the overall symptoms (many people have reported long term remissions using this approach) I ordered the special philips bulbs and installed them in a home tanning canopy. It cost me about $1500 total. Before I did that I had a tanning salon put the bulbs in one of their machines to see if it worked well enough to justify.
Here is the thing - it ABSOLUTELY helped my fatigue and brain fog tremendously. Not sure it did much for the joints/other symptoms. But I am happy to know there is something to help when I have that wall of never ending fatigue. My hesitation is this.....the bulbs emit 0.03% of UVB along with UVA-1. The UVA is fine and supposedly not going to cause skin cancer according to research. But there is that little bit of UVB and I have to wonder if it aggravates the symptoms. There is a filter that deBartolo wrote about in his book but I have not been able to locate. I am taking a break from the therapy for a couple of months to see how I do and to see if I can find the filter. My fatigue is much better lately. I used to use the bed for 10 minutes each side 4x a week. My energy really improved. I got a light tan also, but still had joint pain/other symptoms. Enough to know that this thing helps symptoms but certainly isn't a "magic bullet" like we are all looking for. My next hope is pinned on Orencia....(new biologics drug)
If there is anything else specific I will try to answer.
oh thanks so much karen! my dear hubby was prawling around on the net looking for the magic bullet for me, as he usually does :lol: and came across this. we were introduced to lupus (and vasculitis, anemia, etc...) 3 years ago with a bang, and have had just a terrible time since. im so much better now, however we are still looking for other treatments.
i have cns-sle with siezures, tremors, speech and mobility issues, with heart and lung involvement. what about you? what are you looking into orencia for?
thanks again for your response. i may bug you later for questions for my hubby...he's sleep now
Is this the same as an infrared sauna?
Out of desperation I just bought an infrared sauna that purports to be very helpful to people with all sorts of ailments... (you can see it at http://www.sunlightsaunas.com/ ) It should arrive in 3 or 4 weeks.
I have found that after spending an hour in a regular sauna, I have remissions for about 2 weeks, and we were going to get one of those, but my cardiologist about had his own coronary when he considered the extreme temperature changes... so the infrared sauna says that it doesn't have the same extremes...
Thoughts? Hope? I'll take some hope!
thanks chichibug! i hope it work for you! so, i not sure i understand. it is a heat suana, but use infra red to heat you? is the infra red techology like or the same as UVA-1 light? is the heat safe for you? how do you like it so far? like you, my doc woud have a fit! i love the hot tub and that drive him crazy! i have heart, lung, and brain involvement.
thanks for the info!
The Far-Infrared light frequency is described (on SunlightSaunas.com website) as:
Infrared light is part of the Sun's invisible spectrum of light that has the ability to penetrate the human tissue. Infrared heater technology uses these Far infrared light characteristics to heat the body directly rather than just the air. The experience of a Far infrared sauna is similar to sunbathing, which gives you the radiant heat that is all your own. The Far infrared heat penetrates your skin, giving you that wonderful natural warmth. Unlike sunbathing, Infrared heater technology is completely healthy and safe You can relax in a Far infrared sauna and it will never cause your skin to burn.
It discusses Far-Infrared frequencies here:
All humans send and receive Far infrared waves. The range of Far infrared waves generated by the human body is 6 to 20 microns. The optimal micron output range is between 7 and 14 microns which is very close to the resonant frequency of a water molecule. This similarity makes sense since our bodies are almost 70% water. This range, sometimes called "Vital Rays" appears to have special regenerative effects on the body.
The result of Sunlight Saunas heater designs allows for better performance well within this vital wave range of 7 to 14 microns with a good portion of wavelengths at 9.4--which is the frequency at which a water molecule resonates or vibrates. This vibration causes a release of cellular toxins such as mercury, aluminum, cholesterol and other toxic gases such as sulfur and formaldehyde. This optimal micron output also allows for deeper penetration of Far infrared heat, which improves pain relief, detoxification, circulation, and increased peripheral blood flow.
It seems to differ from UVA-1 light, as UV Rays are "Medium Infrared Rays", like visible light... the "Near-Infrared Rays" are gamma and x-rays, and other Far-Infrareds are microwaves and radio waves...
I am learning a lot about this stuff... I talked to my rheumatologist yesterday about this, and he said that it should provide me with substantial relief from pain, but he is dubious about any 'healing'...
I will certainly keep you all posted on how it goes. It should be here in 2 weeks or so. We need to wire our house with 20amp or something or other ... lucky for me my hubby knows how to do that stuff!
I'm sorry that you have so much involvement with the lupus. How do these effect your daily life?
thanks so much for the info!!!
That is interesting. There is an alternative health clinic here that offers the sauna therapy. I will be anxious to hear how it goes for you and I might make an appointment to give it a try. A 2 week remission sounds like heaven......
keep us posted,