Selling Lyme Antibodies

Discussion in 'Lyme Disease Archives' started by munch1958, Sep 1, 2007.

  1. munch1958

    munch1958 Member

    There was a post on Lymenet from a company asking for Lyme patients to donate ABs. The post caused an uproar and was removed because it violated solicitation rules. I called the company because I was interested in finding out more about this.

    They are looking to buy plasma from individuals with certain infections for antigen test kits. I wonder if these antigens are used for the worthless ELISA test? Are donors fueling that useless test market?

    I'm willing to throw in my candida IGM, IGG, and IGA ABs for free. They can have my EBV and CPN too. I'd be a bonanza of infection for them as long as they wouldn't be giving my plasma to someone else.

    I faxed them my Igenex WB results and my FFC infection panel results. My Quest WB was band 41 positive. Igenex IGM: 30 & 41. IGG: 41 and 58. They asked when the tick bite happened (2001) and did I get a EM rash (Yes). The lab was in Chicago which is 1.5 hours away.

    They thought my case was unusual since I'm IGM positive but not IGG. My LLMD says that's the typical presentation with chronic lyme or there's no blot pattern at all. The Lyme ignorant FFC doctor had my on Doxy when the Igenex test was done. DUH. A big NO-NO!

    I was supposed to get some fancy testing for coinfections and copies would be sent to my doctor. There was no mention of this in the paperwork. Their tests are experimental and under development. So why couldn't they tell me what I'd be tested for?

    I received two folders full of info and two fancy new pens. The driving directions received in the folder were to a lab in Cincinnatti. Chicago is one thing but Ohio is a deal breaker. I can barely handle driving to the grocery store. Plus I can't see driving to Ohio to be rejected for some odd reason.

    They were willing to pay me $400 plus 50 cents per mile or $691 for one trip. I could donate twice a week if I wanted. It's up to me how often I want to do this and the money is there waiting at the lab. Wonder if you get a W-2 for this?

    A trip to Ohio would involve 5-6 hours one way. 3 hours to donate plasma. With business hour contstraints for the lab that could mean a hotel and an overnight stay.

    I found another company that is willing to pay $500 plus expenses including air fare and hotel. My husband thinks it's totally morbid but I see our large credit card debt and a means to an end. One of my best abilities is to make blood. I'm not capable of working right now.

    Has anyone done this? Can they manufacture antigens in a lab? Why do they need to buy them from people? Is this how they make IV IG? or gamma globulins?

    [This Message was Edited on 09/01/2007]
  2. grace54

    grace54 New Member

    This is interesting. I wonder why I was never checked for infections at the FFc as I really have no proof that I could be a donor except that I am treating lyme with no positive test results.

    I wouldn't mind doing some more blood letting if I knew what it was used for. Hope we can find out more about this. Thanks for the info.:)
  3. victoria

    victoria New Member

    Don't remember what company it was, but at least at the time (about a year+ ago), they were willing to pay up to $1,000/week for blood. I didn't follow through for my son, he was so skinny at the time and herxing so much... but always wondered about it.

    I'd think they would give you a 1099... since you're not employed by them per se.

    Then you should be able to deduct your expenses... but they (SSD/I) have a hard time understanding 'expenses' from what I've seen, as it doesn't fit into their neat formula of going to work for an employer.

    Gee, it would be kind of a nutty situation to be on SSD or SSI and then get that kind of $$/week, you'd be ineligible after the 'Ticket to Work' 9 month period ended but would at least still be receiving benefits during that time!

    (-- altho of course if it ended and/or you were still unable to work, you could still get back on SSD/I with no re-hearing within 5 years.)

    Let us know what you find out... it's intriguing. & Good luck, hope it works out to be worthwhile!
    Victoria



  4. munch1958

    munch1958 Member

    The company that wanted me to travel to Ohio was Seracare
    www.idonateplasma.com If they can come up with lab near by I'd go. Possibly they'd have a lab near you Grace.

    I was very interested in getting tested for coinfections and having the results sent to my LLMD. Getting a positive Lyme test or a piece of paper that says "POSITIVE" would be worth a drive to Ohio.

    The other company that I found was Access Biologicals.
    http://www.accessbiologicals.com/tobecomeadonor.html
    I filled out the donor contact form but haven't heard anything. This company has a doctor at the lab to do a physical as part of their requirements.

    The weight requirement is > 110 pounds. I wish!!! Still can't lose any more weight. Quit trying and am happy to have lost 30 pounds and kept it over for over a year. As far as I know being on ABX, hormones and pain meds does not matter since another person would not be getting the plasma.

    I should go file for disability but don't want to give up access to private health care. My first husband was blind and on dialysis due to brittle diabetes. He was turned down flat. I had to fight to get him medical benefits and just don't have the energy to go through that ordeal again.

    Even if I could donate once a week I could pay down our credit card debt. Once I rotate through this next series of oral ABX my LLMD wants me to do a trial of IV ABX. That will be expensive because my insurance doesn't cover stuff. Hopefully, I will meet my out-of-pocket soon so they'll pay at 100%.

    The webpage from sickfromatick.com regarding insurance coverage is interesting. It says if you stay within the bounds of your policy you'll never recover from Lyme. Good reading! If you haven't filled out the survey please do.
    [This Message was Edited on 09/03/2007]
  5. victoria

    victoria New Member

    In order to GIVE blood for general purposes like Red Cross, I remember one had to be MORE than 110 lbs...

    when I was young I was less than that, so nobody asked me.

    Thanks for the info, I may look into it for my son. Did they say what kind of IRS form you would receive?

    all the best,
    Victoria

  6. munch1958

    munch1958 Member

    Both websites state that two forms of ID are needed on the day of the donation. A driver's license and social security card. The check is given to the donor immediately afterwards.

    There is a form in the Seracare packet that requires a physician's signature. I don't know why they would ask for your doctor's permission to donate plasma. I think Access Biologicals has a doctor on site that gives you a physical and approves the donation.

    The donor packet from Seracare says that they do not issue a 1099 tax form, so the compensation you received for your sample is not reported to the IRS.

    I was told it was up to me to decide how long I want to continue to donate plasma and how often. I believe it can be done twice a week. I've heard of many college students being paid for plasmapheresis.
  7. grace54

    grace54 New Member

    I contacted both and Seracare has a collection facility within 60 miles of my home so am awaiting notice from both.Maybe there is something we can do to help out that doesn't require work:) Blessings
  8. munch1958

    munch1958 Member

    An hour is not such a bad drive. Where else could you earn $400 for 3 hours worth of "work" plus get 50 cents per mile in travel expenses?

    Seracare told me they would run some of their new diagnostic tests on my blood. I was looking forward to getting some testing for coinfections. I don't have an extra grand laying around for Igenex tests. Please post your test results as I'm very curious to see what you get.

    I just faxed my Igenex WB to Access to see if I qualify for any of their programs. I hope they have a collection lab in my state. Even if I could donate plasma once a week that would pay off FFC bills.

    My husband thinks it's morbid and a creepy way to make extra money. I'm a font of infection just waiting for a buyer. Bring on the vampires....ooops...I mean plasmapheresis phlebotomists...or the railroad spike needle in the vein.

    From the Seracare literature...."Apheresis technology was developed with the donor's comfort in mind. Similar to whole blood donation, plasmapherisis donation consists of four steps: registration, health history and mini-physical, donation and refreshmints. From registration to refreshments, the process lasts 1.5 to 2.5 hours.

    During the actual dontion, you will sit in a comfortable recliner and a carefully monitored machine will draw blood from one arm through sterile tubing into a cell separator centrifuge. The blood stays inside the self-contained sterile tubing and never comes in contact with the machine.

    As your blood flows into a spinning bowl, the heavier red cells are forced to the outside of the bowl. The lighter plasma and platelets stay near the center. As the bowl fills, the various blood componenets rise to the top. After the needed component is donated, the components that are not needeed are returned to the donor through the same arm or the other arm.

    After donation, your body replaces your plasma within 24 hours. It's a safe process - the collection sets and needles are sterile, used once for each donor and then discarded. Donors usually relax, read, or enjoy a movie during the donation."
  9. grace54

    grace54 New Member

    I called Seracare and they sent me to a Quest collection lab near me to see if I qualified, results were back in a couple of days and they paid for the tests but nothing else as it is just a preliminary check to see if I have any anti-bodies.

    They said I don't qualify as no lyme anti's showed up. I also was going for auto-immune anti's, in particular Hashimottos but I didn't have enough of those anti's to qualify either. So I am wondering if I have Lyme again. They did some new specialised testing that should have picked up something in the Lyme department.

    But the good news is I think the compounded t-3 for my thyroid is working as the anti-bodies were quite low he said. All other results were normal too. He said I wasn't sick enough:) Yeah I wish. He did say if I know anyone with Lyme to send them his way. He said they have draw labs in many areas to check for eligibility so it might be worth it to get checked.
    [This Message was Edited on 09/13/2007]
  10. munch1958

    munch1958 Member

    Hi Grace!

    Well at least you took another step towards finding out some kind an answer. I love T3 and it got rid of my high reverse T3 levels. To me it was worth going to FFC just to
    to get that. But for some reason the doctor didn't want to give me more when I asked for more.

    Did I read that the FFC didn't do an infection panel on you? Don't they do that during the second visit with everyone?

    For some reason after seeing my Igenex WB Seracare asked me to drive to Ohio. I'm not doing that told be I don't have enough ABs either.

    The other company was all set to put me in the candida AB program. They asked for a list of my meds then rejected me as a donor because I take too many hormones and Nystatin & Diflucan. DUH! Isn't chronic candida the reason why I have hormone issues? The reason why I'd take antifungals?

    Now I read that they sent you to a Quest facility to see if you qualify. If there isn't enough ABs to buy for their purposes that doesn't mean it's not chronic Lyme. That just means you don't have an immune system response.

    You could be seronegative for a bunch of different reasons.

    Source: canlyme.com
    REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

    Recent infection before immune response

    Antibodies are in immune complexes

    Spirochete encapsulated by host tissue (i.e.: lymphocytic cell walls)

    Spirochete is deep in host tissue (i.e.: fibroblasts, neurons, etc.)

    Blebs in body fluid, no whole organisms needed for PCR

    No spirochetes in body fluid on day of test

    Genetic heterogeneity (300 strains, 100 in U.S.)

    Antigenic variability

    Surface antigens change with temperature

    Utilization of host protease instead of microbial protease

    Spirochete in dormancy phase (L-form) with no cell walls

    Recent antibiotic treatment

    Recent anti-inflammatory treatment

    Concomitant infection with babesia may cause immunosuppression

    Other causes of immunosuppression

    Lab with poor technical capability for Lyme disease

    Lab tests not standardized for late stage disease

    Lab tests labeled "for investigational use only"

    CDC criteria is epidemiological not a diagnostic criteria

    Lack of standardized control

    Most controls use only a few strains as reference point

    Few organisms are sometimes present

    Encapsulated by glycoprotein "S-layer" which impairs immune recognition

    "S"- layer binds to IgM

    Immune deficiency

    Possible down regulation of immune system by cytokines

    Revised W.B. criteria fails to include most significant antigens





  11. grace54

    grace54 New Member

    I agree with you about t-3 as I have posted it has helped my pain considerably. Before t-3 my pain was sharp like a tooth ache, if you ever had one you are near tears and just want it out. I could not sit still and literally turned in bed about every other minute. No wonder I couldn't sleep and that was with medication. I tell the FFC that the t-3 is the only thing that helped so I give them credit for treating empiracally.

    DR wants me to do some more blood work before she ups the t-3 as I am at 137.5 mcg. I don't remember any infections being found at the FFC and I was never given any meds to treat anything.

    I suspect one would have to be quite ill to show the kind of anti-bodies they want at Seracare. I even thought my anti-biotics/catsclaw might have stirred things up to catch some anti-bodies but I guess not.They also checked for co-infections like Rocky mountain spotted fever and said all was negative so that is positive.

    I got the impression they had a lot of money to spend collecting blood and were really looking for donors. It could really pay off especially if someone lived near a lab as many are not able to travel very far.I guess one could afford to pay someone to drive too. Oh well maybe I'll run into someone with lyme and let them know.Get well soon:) PS I forgot to answer your ?. I talked with a guy named Jeff at Saracare and Robert at Access:)
    [This Message was Edited on 09/14/2007]
  12. munch1958

    munch1958 Member

    Those are the same two guys that I talked with! Odd that they gave me a different story. I faxed them some more labs today showing low endocrine status of all hormones. It's not like I'm taking hormones for the fun of it. They're expensive!!!

    Really, I don't understand how getting my hormones from a bottle is any different than the ones I'd make. If they were all in normal ranges it wouldn't even be an issue because they'd already be in my body. Most people with chronic candida infections get hormone dysregulation.

    Not that I'm trying to beat a dead horse but they said I was too sick to donate and I should keep my plasma. On too many meds blah blah.

    That's also stupid because I'm very good at making blood. Was treated for polycythemia vera which is a blood cancer or too many red, white and platelets.

    Doctors and others say I don't look sick. URGH! Why am I on all of these meds then? As far as their tests for Lyme and co-infections how accurate are they? What kind of test was it? Did your doctor get copies? Couldn't be ELISA because those take a month to get back. If it was Quest we know that their Lyme test is only 30% accurate.

    I think the reason why they have so much money for donors is because they can't find them. Who are they going to get? Healthy people don't have a list of meds a mile long nor do they have antibodies. Only 1 in 50 gets accepted into the Lyme program. Yes, it would have been great $$$ if I could have donated.

    My insurance company is paying for HGH. The stuff Dr M wouldn't prescribe. The stuff my LLMD said I needed on the first office visit. I had a stim test by a regular endocrinologist and flunked it.

    After the initial discussion about B-HRT being the ultimate generics, the endo said he wouldn't mind keeping me on T3 if I liked it. He adjusted my T3 down to 125 mcg. from 150 mcg and added 50 mcg of T4. The dreaded Synthroid.

    I told him I was very happy with it the way it was and to please leave it alone. I wanted the HGH and didn't want to appear to be uncooperative. So I went along with it.

    Today I noticed I'm getting heart papitations and sweating profusely. I never got any of this on T3. Can't tell if it's that or the ABX. I don't usually feel like my heart is skipping out of my chest.

    I also found out that I have hypercoagulation because of high values on the Hemex Mocha panel. Will start heparin soon. I don't know if heparin will bust up the fibrin deposits and clear away the pathogens. You herx like crazy I hear. But I heard that about Flagyl and didn't herx on it other than getting really depressed.

    Sure wish someone would have some answers for you. Have a great weekend!

    Linda
  13. victoria

    victoria New Member

    .........
  14. munch1958

    munch1958 Member

    What I can't figure out after all of this time is...

    "Why couldn't the company draw my blood in IL and ship it in a cooler to Ohio?"

    On T3...

    I've come to the conclusion that TSH will be low.

    T4 will be very low or out of range.

    Total T3 will be high.

    Free T3 is the way it should be dosed. Target range is 360-450 for optimal benefits. Mine is 316 on 137.5. I'd like to go back to 150 mcg next then try 167.5 if necessary.
  15. klutzo

    klutzo New Member

    I just spent some time at both of the URLs listed here, sine I desperately need money to supplement my disability. My DH's once thriving business is failing, he is too old to get another job, and I am terrified.

    (See post below for how I screwed this up. I am now editing this to fix it). DCI Biologicals has a donation facility only two miles from my house, and it says on their web site that they do the donor screening for antibodies themselves, which would save me the trouble. However, it does not say you will be "very well paid", like the other site does, and I do wonder how any late-stage Lymie would still be producing antibodies. We are often told by experts that it just does not happen in the later stages.

    Munch, it says on their web site that having had cancer makes you ineligible. I don't know if Seracare also goes by that. My ex-husband has polycytemia vera like you did, and I believe you would be ineligible on that basis alone, unless they have changed their ability to treat it a lot since then. He was told he was in remission, but that cure was impossible, and it could come back when he got older. If it can be cured now, I am very glad for your sake, and I guess you would not be ineligible then, as long as you were five years out from symptoms, ie. high HgB and Hematocrit.

    The other site, Access Biologicals, says they pay really well, but they want you to have a positive antibody test already before you apply to them. For Lyme, they want a posivite Lyme IgM. I don't know how likely it would be to be able to get this to come up positive after 22 years of illness, do you? (The only Lyme tests I've had were two Bowen QRiBbs.)

    I am going to contact the DCI facility near my house and ask them about all this. If I learn anything new, I will post it. Thanks so much for posting the info. If there is some way I can manage to make some antibodies so I can qualify, and they really do pay that well, then you may have saved us with this info.

    Klutzo
    [This Message was Edited on 01/06/2008]
  16. klutzo

    klutzo New Member

    Victoria,
    Since the plasma companies do not give you a 1099, nor do they report it to the IRS, and the companies call it a "donation", I do not think you would be obligated to tell disability about this income. After all, it is NOT working. If you get an inheritance, for example, it does not affect your eligibility for SSDI, so why should this? Neither of these are income from actual work. I sure would not tell them if I thought I did not have to.

    As is usual in government, I doubt if the right hand knows what the left hand is doing. I have also heard from two people I know that they throw you into review if you use the Ticket to Work, though how they could construe giving plasma as working is beyond me, and I would get a lawyer if they tried to say so.

    Klutzo
  17. klutzo

    klutzo New Member

    Munch and everyone,
    I am so sorry. I wondered why the URL for Seracare came up with a site called DCI Bioloigcals. The place I ended up at was www.donateplasma.com. I had left out one "i" in the URL and thought I was at Seracare when I was not! DUH.

    So, the plasma donation place near my house that I sent an e-mail to is NOT Seracare and I have no idea how much they pay, etc. I will let you all know, as they have 5 labs in Florida alone. With my luck, it will end up being $10 or some such thing. Drat.

    Now I have to go back to the correct URL for Seracare and see if there is one near me.

    OOPS! Klutzo
  18. klutzo

    klutzo New Member

    I just spoke with Jeff at Seracare. He says they only want people within the first two years of becoming ill w/Lyme, since they are looking for high titer antibodies, and there is virtually no chance of finding them in a person who has been ill longer than that.

    I told him I'd been misdiagnosed for 17 yrs. and finally diagnosed w/Lyme 4 yrs. ago, which he says is much too late. He said the reason they want the antibodies is to help develop better testing, so what happened to me stops happening and people get correctly diagnosed sooner.

    Klutzo
  19. klutzo

    klutzo New Member

    Everyone,
    Below is the copied and pasted response from the Plasma center near my house. Looks like most of us have missed the boat.....It's too bad, since I could really use that money.


    "Thank you for your interest in the donor programs and visiting our website.
    Unfortunately in order to be qualified for the program it needs to be a more
    recent diagnosis, within the first 30 days or so. We do not have a program
    for "chronic" Lyme patients. At this stage in the game your IgM levels
    should be negative and will not be at the levels they were at 22 years ago.

    We would like to thank you for your interest in the donor programs and wish
    you the best."

    Klutzo
  20. victoria

    victoria New Member

    I don't think my son would've even qualified then, as when he was dx'd in 2005 the one band that many doctors feel indicates one has had it for more than 2 years was also positive... at any rate, his WB was in 2005. Dang.