Autologous serum saved my eyes

[Neal]

I haven't heard back from my docs yet about getting DHEA drops. I just pulled that five percent figure out my hat, thinking it'd be a good place to start. One percent sounds awfully low. Have you had a good response with that?

What is it with doctors and email? I guess mine don't respond much because it means they're working for free? Jeez, I'd pay a separate fee for email services with my docs, since evidently such communications aren't considered as part of my regular office visits.

Here's another thought on the custom eye drop franchise. It's called Eyeshine, and the booths are next to the shoe shine stands at the airport....

[dryeyes2]

5% Dhea?

Hi Neal,

I am using 1% DHEA from Leiter's. Did your doc write a script for 5%? I didn't know they offered a higher percent. Do you know if there is anything in between?

Thanks.
dryeyes2

[Lucy]

Mine was 50 percent concentration. Interesting info, Neal, on the Leiter's route of getting drops. Will be back later to re-read. Lucy

[Neal]

Autologous serum saved my eyes

I insisted on starting with 50 percent serum/saline because I had called Chuck Leiter, the compounding pharmacist, and he said most of his serum eye drop customers (the majority of his business now) used either 100 percent or fifty percent serum. He said 20 percent serum was mostly for kids. Since most of the research uses 20 percent serum, I had to break up some furniture to get my doctor to write a 50/50 'script.

Here's a link to a page on my website with a lot of research and background on serum eye drops, inlcluding the elegant Leiter's protocol: http://nealmatthews.com/dryeye.aspx.

On the cost question, it will work out to about $1000 a year, based on Leiter's prices of $15 a bottle. One bottle lasts about a week, but I'm using less as my eyes heal. My last shipment (50/50 serum/Bss) was 16 bottles for $330, including shipping from San Jose. Since I won't let my hospital draw my blood anymore (competence issues), I found a local medical lab to do the blood draw, spin it, and ship the serum to Leiter's for $55. For me, after five years of the most advanced cancer treatments that are probably pushing over half a million dollars (thank God for insurance), my own blood ended up providing my most effective medicine. (The stem cell transplant didn't kill the Hodgkins.)

The fact that no pharmaceutical company is involved, because there's no profit in selling somebody their own blood, is a major reason why more Americans don't use serum drops. Most of the research and use is based overseas. Remedies with no profit potential don't get much respect in the hyper-commercialized U.S. medical community. I looked into buying my own centrifuge and making home-brewed eye drops, and I did in fact draw my own blood once and left the syringe in the fridge overnight to separate itself. It worked, and I used it in my eyes, but I wouldn't recommend doing that. It's just nice to know I could do it if I had to. I keep telling my docs, somebody's going to get rich soon by opening a chain of street corner custom eye drop shops, staffed only by an othalmologist and a phlebotomist.
Possible corporate name: Here's Blood In Your Eye!
Neal

[Richard Esser]

Questions re: Concentration of Serum Eye Drops

Thank you for the valuable information. I did try serum eye drops but in looking at the concentration mine say 20%. I did not feel they were effective. Did you feel a person should start out at the 100% concentration or the 50% concentration? I see my physician in two weeks and want to try the drops again.

Richard

[HOSADOS]

hi I find serum very interesting- I havne't tried it myself, but I wonder how is serum compare with Freshkote ? (the reason I ask is that for me, only Dr. Holly's drops made a bid difference and I wonder whether there is something better)

[Lucy]

Thanks for writing about your experience, Neal. A few months ago, I, too had the serum drops made. I had it done at the U of MICH and then I had to transport the product to a compounding pharmacy 20 miles away. I have Sjogrens and eyes messed up from Lasik and I liked the way the drops felt.

I found out my insurance would not pay for this and I cannot afford to make these 200 mi round trips frequently and pay $75 for about 3 weeks worth of drops. I could have had the U of M use Leiters instead, but I would have had to pay shipping charges and all that.

I hope your healing continues. I've known a couple of people who had your result after a bone-marrow transplant. It was not a good place to be. Lucy

[Neal]

I just came across this excellent site and forum, and after browsing the skimpy posts about autologous serum eye drops I thought I'd convey my own success using them.
Shortly after receiving a stem cell/bone marrow transplant for Hodgkins lymphoma, a side effect called Graft v. Host Disease (GVHD) started clogging up my lacrimal glands and decommissioning my meibonian glands. I haven't made enough tears to moisten a Q-tip in the last three years. The loss of nutrients to my corneas left them cratered and covered in filaments which had to be removed by hand with forceps. My punctals have been plugged and cauterized. Restasis has failed three times.
Long story short, my eyes were killing me, literally. Couldn't read or drive, and the constant suffering does mean things to a traumatized soul. Then I got the serum drops last April.
Relief was immediate and has only gotten better. I started with 50/50 serum/saline, refilled after 12 weeks with 100 percent serum, then refilled again with 50/50 serum/Bss -- Balanced sodium solution, gentler than saline, used in eye surgery. I went back to a 50/50 mix because all I needed to maintain my healed eye surfaces was a maintenance dose.
By replacing the nutrients lost when my tears dried up, the serum drops allowed my eye surfaces to repair themselves. Now they feel shielded, my vision through my Panoptx goggles is 20/20, and the agony of dry eye (compunded by dry San Diego) has been reduced by more than half. It only makes sense -- the first responder to any injury is blood, which gets to work right away on repairs.
I've seen references to the serum drops being overrated. But I've done a lot of research on them, and given my experience, and the confirmation of eye surface repair due to the serum drops by both my own opthalmologist at UC San Diego and a research opthalmologist at NIH in Bethesda (part of a GVHD study), I'd be inclined to attribute most of the lack of success to misplaced expectations and/or mishandling the serum, which is easy to do.
The serum drops work on the eye surfaces, not the tear glands. They do not increase lubrication. That's a separate issue which I hope to address by adding testosterone-but-as-DHEA to my serum drops. We've all seen the studies and ongoing trials about testosterone and tear gland stimulation.
I asked my opthalmologist by email this morning if he'd write me a prescription of fifty percent serum, forty-five percent Bss, five percent DHEA. Leiter's compounding pharmacy in San Jose has been making DHEA drops for a while, and they've been concocting my serum drops. The eye doc already thinks I've gone renegade, so what the hell.
Neal