View Full Version : UVA1 Phototherapy
06-19-2008, 06:12 AM
hi ... i published a book in 2004 about a treatment that has done me a world of good - it has eliminated my fatigue (that's why i was able to write the book!), cleared up my brain fog, and has generally reduced inflammation throughout...It's called UVA1 pphototherapy (yes, i know UV is bad for us, but not this small part of the UV spectrum - it's been researched & tested now for about 20 years)
I've posted the book (at least all the important chapters - the stuff i left out was just my own personal story which isn't really that interesting) on my own server as password protected PDFs.
All you need to read it is Adobe Reader, the URLs & the password -- all of which you'll find -----opps, sorry - just got a message that i can't give you the link.
Dear System Mod - is there anyway I can get this link posted? I really don't want to post 10 messages of small talk first in order to provide this free material...many thanks
06-19-2008, 06:27 AM
Meeting us isn't small talk...tell us the personal stuff here then...
I understand why the rules of 10 days..many have did the idle chatter, posted their product, their drink , their pill and when people didn't respond as they anticipated, they never typed again.
Helps eliminate soliciting.
We've had topics on this before, so there is some interest..to what degree..I don't remember...
06-19-2008, 06:41 AM
thanks oluwa - i just saw the other UVA1 thread - was pleased to see someone tried it & got good results.
thanks for explaining the 10 post policy - it makes sense....so, this should be my 3rd post....alrighty - 7 to go!
as for, "Meeting us isn't small talk," if we actually met, it wouldn't be -- but there's something about typing in a small box to no one in particular that i'm uncomfortable with.
but now that you've responded, i cool with it.
as for my own personal story, it's long & i've already written it - you can also read that for free if interested on the book's website - whose link i also can't give you...but as mentioned in another post, it's called Lupus Underground ...just google it - should be the first hit...there's a PDF link there of the book's introduction, called "The Basics".
06-19-2008, 07:01 AM
Six to go now..
I did google it from when I read your first post...
06-19-2008, 03:47 PM
I emailed you a couple of years ago after reading your book. Well, here is my story. I ordered the philips bulbs through a tanning salon. They set up a bed (it was summer so they didn't mind). I tried it for 6 weeks - liked the results and ordered my own tanning canopy. Put the bulbs in - all set. Kept using. Results seemed to wane. Started wondering if the small amount of UVB was wiping out the benefits.
Long story short, I could not find anyone who makes or understands the PINK filter you talk about in your book. If I could obtain a filter that I thought would do the trick, I would keep doing the therapy.
I am pregnant right now though so have to wait 6 months or so. Anyhow, any info you can post on a filter would be soooo helpful.
PS Even without the filter, I did not have any adverse reaction to the therapy.....just not quite as effective as I had hoped. (ie. still need lots of prednisone!)
06-19-2008, 07:03 PM
hi karen ... i was afraid of that hearing that -- the people who try this using an unfiltered TL10R sometimes report a problem after a lot of success the first 3 weeks or so - i'm sorry....i think you're correct - the small amount of UVB/UVA2 is still enough to spoil the results for some people....how long were your exposures & how many days per week?
and i'm sorry to tell you the filters are impossible to get at this point ....at least for the time being - but i'm working on it....not sure i'll be successful in 6 months, but i'm working on it (it's a very long complicated story).
the only suggestion i have is this -- if you want to try it again (the fatigue relief is great isn't it?) - find a cheap, used tanning canopy - 6, 8, 10 lamps, doesn't really matter cause you can adjust your exposure time...install the TL10Rs... position the lamps about 10-12 inches from your chest bone....you can buy a UVA meter to check the energy level of whatever set-up you end up with (meaning the # of lamps), and just do the math to figure out how long of an exposure you need to give yourself 6 joules, but only do it once every 2 or 3 weeks...if you don't get a meter (but i suggest you do) do 6-7 minutes per side with a 10-lamp set-up, maybe 9-10 with 8 lamps, and 13-15 with 6 lamps.
also, how dark are you? meaning skin tone....the darker you are, the less UVA1 penetrates the skin...you need to adjust for that too.
hope this helps a little...best
06-20-2008, 06:58 AM
If people can't get the therapy in the USA and have to rigged something up, order parts, do the math...I am at a lost, confused, why the book?
Is your book a DIY book, like a Bob Villa...?
Is you book to promote the unavailable therapy?
Is it to promote someone's else's study, a possible treatment in the future?
Or to sell a book?
06-20-2008, 07:16 AM
hi oluwa ... the intent of the book is to inform people of the existence of this promising therapy .. the goal is to get it approved and made available - that's what i'm working on on now...it's my hope that some 16 year old kid who gets DXed next year will one day have access to this treatment & not need to spend the rest of her life on high doses of toxic drugs...i think that was reason enough to publish it.
while the book contains my personal story about building a UVA1 light unit & offers a report on how well it's worked for me & others, it's not a do-it-you-self guide 'cause the parts aren't really available any more (but i do appreciate being compare to bob v)...early readers of the book snapped up what was left & have all reported great success (remember it was published in 2004).
as for selling the book, you may note i signed up here to give it away, and when i'm able to post a link, that's just what i'll do, so please keep that confusion flowing & ask more questions so i can get my post count up.
PS - some people, like kkelly, are pro-active in their care & will do what it takes in an effort to get a leg up on this disease; others just wait to be handed pills - the book was written for people like kkelly...hope this helps.
06-20-2008, 07:45 AM
oluwa - here's another thought .. if you'll google ["anthony debartolo" lupus] - exactly as typed in the brackets, including the quotes around my name, the first hit will be my book in google books -- i gave it to them a couple of years ago to publish on-line for free, but they only publish parts of books ... if you're interested, you can start reading today ... hope this counts as a separate post
06-20-2008, 07:46 AM
You don't need my confusion :shock: to get your post count up...
If the book is unavalable, all snapped what was left up... they are still selling it at Amazon for $17.96. BN for $23.95
Wow, thank you for providing it free.
Oh, BTW...Is it the only..."The Basics" chapter that is for free? I read that when you first posted. Not much contained within there.
All people are not the same, and all diseases don't treat people the same. Pills, reading, researching, homeopathic remedies I feel they are all being their own advocates, participating in their health...
Some people don't have the financial resources either, or do rely on FDA approval on products. So to say they are not being pro-active I find well, kind of insulting to lump, bump people, especially people who have been pushed under the rug sometimes.
Hardly rigging up a gadget means pro-active..there are other ways we all are being pro-active, advocates...and etc. Just by them coming to this forum....and available to you too, a public format to promote, care, provide information...through a book.
06-20-2008, 10:20 AM
You may post a link about your book when you post count is up. Just know that there is a very fine line between providing information and/or resources and attempting to make financial gain. As the moderator, I am very, very, zero tolerance on any attempts to make financial gain through this site.
As Oluwa mentioned, you first stated that you would provide free access to your book or information in your book. It was in that vein that I allowed the conversations to continue. Just, please, be very careful not to cross the line because this site is all about providing information, resources, support, understanding, fellowship and answers.......at no cost to anyone!
Thank You For Respecting Our Site and Its Purpose
06-20-2008, 11:18 AM
fear not Saysusie, i am a man of my word...i just want to get the info in circulation as much as possible.
as for making money selling a book about a treatment few have heard of for a disease few have heard of, well, that was never my objective.
btw - did you know that i've been a newspaper reporter for nearly 25 years? - this is what i do, inform the public ... in this case, i'm just not getting paid.
...and it's certainly not the 1st time...
06-20-2008, 11:35 AM
hi Oluwa - i didn't say the book was no longer available, i said the equipment described in the book which i bought & use is no longer available - the early readers of my book basically bought up all the available filters - which were originally made in the '70s for the german sun tanning industry -- it's a wild story.
the PDF files which will soon (i hope) get posted are of the most important chapters in the book (the stuff with the verifiable facts) - the other stuff, like my own personal story, as in "the basics," doesn't have many...but, i get the feeling if you didn't appreciate the book's introduction, you won't like the rest off the book either, so you may want to skip it once posted.
as for my "pro-active" remark, it was of course a general statement, and as such, exceptions abound, but i think i made a valid point about a phenomena/condition i've seen many times.
lastly, the only reason my material was printed in book form was because i couldn't get any of the editors i work with to publish anything about this stuff...sad to say, the general public doesn't have much interest in lupus.
06-20-2008, 12:14 PM
ok, looks like i need 10 posts + 7 days on the board, so i guess i'll be back late next week...again, thanks for all your help.
06-20-2008, 12:27 PM
You are right, I read your wording incorrectly regarding the parts vs the book.
I try to read a variety, not what just coincides with my beliefs, disbeliefs and even if it doesn't peak my interest. Education starts by turning a page.
I wasn't judging your book, I was referring, querying, to the offer of one chapter as being free and how little the one chapter offered as in a revelation.
So, without the stamp of approval from the FDA, parts unattainable how do you want me, others to factor in...through petitions, letters written, funding, donations, buying your book or to keep the idea in the back of our heads, waiting...?
06-20-2008, 01:19 PM
Oluwa - all i'm asking, nay, suggesting, is that you read the material.
letters, etc., i've been doing for 4 years & i've had an effect - not all good i'm afraid -- for example, due to the book, last year the FDA changed it's regulations concerning the marketing of sun tanning equipment - now, if a sun tanning device has ever been used by a medical professional in any setting for a medical purpose, it needs to be reviewed as a medical device before marketing....when i wrote the book, i could have sold this stuff as sun tanning equipment & been done with it.
(i've also pitched this story to several major news organization in the country - ABC News, 60 Minutes, New York Times, etc --- the only positive thing that i'm aware of that has thus far come of that effort (other than a lot of top health editors now know about it), is that the NYT's now includes UVA1 phototherapy in it's health guide & describes it as a 'promising' lupus treatment ...i'd give you the link to their guide, but...)
which reminds me - and this is very important - when i wrote the book i was under the mistaken impression that this light method might never get approved by the FDA for a host of reasons...i was fortunately very wrong - it's a lot closer to FDA approval than i thought...it's not going to take many more successful research studies before a medical device manufacturer applies for approval - thank god for the profit motive! 'cause that's what it usually takes to get things done in the good old US of A.
...have a very nice weekend - i'll be back late next week ... my b-day is on tuesday, and as tradition dictates, the celebration starts today @ 5 pm & runs through next wednesday...see ya.
06-20-2008, 01:28 PM
May your birthday wish come true....
I will read...next week...
Keep well...be safe celebrating your day...
06-27-2008, 03:51 AM
thank you oluwa - as a matter of fact one of my birthday wishes did come true -- my wife was able to come home early from an out-of-town business trip & at least spend a little time with me.
looks like i can post those links now:
you can read the book's introduction, "The Basics," as a PDF here.
I've posted the rest of the book (all the important chapters) on my own server as password protected PDFs.
All you need to read this material is Adobe Reader, the URL links & the password -- all of which you'll find here.
i'll do my best to check in at least once a week to see if i can answer any questions concerning this material.
06-27-2008, 03:55 PM
Anthony ...well, good luck on this endeavor, whichever way it is taking you.
A bit interesting..though, well, I can't say the chapters blew my dress up but I can now say I am aware. I heard, I read. Thanks, Anthony.
06-27-2008, 05:44 PM
as long as you're now aware this method exists & that it works, my work is done oluwa.
& for the record just in case my wife drops by: blowing up your dress never crossed my mind.
06-28-2008, 07:42 AM
P.S. I don't wear dresses anymore.
09-29-2008, 08:49 AM
My son-in-law-to-be owned a tanning business (since sold). He spent a fortune to put a Non-UVA tanning booth in. It cost him like $10,000 for it. He also had that spray-on-tan; which is off topic but he, himself, wanted to advocate "safe tanning".
*I just read the links posted about this theory*.
Now; I am not sure if that booth is the same as the UVA1 as posted in the book. My daughter's wedding was coming on, and she had a college break and was working at the tanning place. So she let me try the booth.
All I can say is I've never felt so well in my life and her wedding! I was pain-free and it was the most wonderful experiance!
I am VERY sensitive to sun but my (now) son-in-law, who was actually a Pharmacist at that time and had some medical knowledge, felt so sure it wouldn't hurt me. And it didn't. :D It may have been curing my S.A.D; but my Lupus went into the best remission ever.
He sold the salon as it was a pain in the you-know-where.
My daughter, who also has SLE, is now a Dermatologist. I'll have to check with her and see if they do anything with this. She has not had many flares as she (learned at her Mother's knee) takes very good care of herself, what she eats (only organic), excercises and all that. She always, always uses a strong sunscreen and is adamant about that with her patients.
BUT those booths are expensive! And expensive to use (unless you have a son-in-law who owns one). They aren't like the 'tanning beds'; thios one you stood up in and I didn't even get a tan out of it :puppydogeyes: