| To: [email protected] From: [email protected] | Block Address | Add to Address Book Date: Wed, 4 Apr 2001 17:04:38 -0700 Reply-to: [email protected] Subject: [FGF] Fw: [homeodetox-talk] FWD; off topic/Dr. Amy on FGF Listmates, I thought some of our newer members might appreciate reading this from Dr. Amy Holmes. marilu. ----- Original Message ----- From: Cecilia Berger <[email protected]> To: <[email protected]> Sent: Tuesday, September 12, 2000 4:30 AM Subject: [homeodetox-talk] FWD; off topic/Dr. Amy on FGF > > Sharon, I went and found it. Pretty nice write up, about FGF. Cece > Message: 1 > Date: Sun, 10 Sep 2000 07:30:42 -0400 (EDT) > From: Amy Holmes <[email protected]> > Subject: FGF > > Listmates, > > I usually try not to become involved in controversy, but I > seem to > find myself in the middle of it lately, so I thought I > might as > well jump in here. > > I found out about FGF in 1997, but put any investigation of > it as > a possible mode of treatment for my son on the backburner > because I > thought that I could make him better by using other, less > drastic > means. By early 1999, it was clear that whatever we were > doing was > not working, and we had done just about everything that > made any > sense whatsoever. He had been GF/CF since 7/97, had been > doing 40 > hours a week of ABA under the real Lovaas people, secretin, > getting > rid of bad bugs in the gut, you name it, we had done it. > We also > did some not-very-scientific things like having Catholic > priests say > healing masses for him (and we aren't even Catholic). > Nothing was > working. As of April 1999, he was still non-verbal, still > totally > zoned-out, and still lived to stim. Developmental > assessment at > that time showed him to have a DQ of 58 - severely retarded > by any > standard. > > So, I then began investigating both FGF and Dr. Aguilar. I > reviewed > the entire medical literature available at that time on > FGF, not just > the abstracts, the entire articles. I came to the > conclusion that > the worst thing that could happen if we tried FGF was that > it didn't > do anything. The risk of prion-transmitted disease was > real, but > extremely small (and that was my biggest concern). > Comparing this > risk to the risk of having my son mistreated in an > institution after > we died seemed a risk worth taking. > > I then investigated Dr. Aguilar through several > international > neurology organizations. He turned out to be extremely > well-respected > by all groups in the fields of mental retardation and > pediatric > brain injury. He had pioneered the use of visual evoked > potentials > to evaluate brain injury in children - it had been used > extensively > in MS in the pre-MRI days. His ability to read and > interpret EEG's > was widely known in the international neurology circles. > > About the same time that I started Mike on DMSA (I had > become > very bothered by his high hair mercury levels that showed > up after > DMSA treatment for lead toxicity), we took him to see Dr. > Aguilar. > I must admit, being the arrogant US-trained physician that > I am, that > I was still VERY skeptical of any treatment that originated > in > Mexico. I really expected to see a flashy Mexican quack, > but he > was nothing like that. Both he and his entire staff were > very > professional. I was allowed to see the entire EEG as it > was > being recorded from my sons's brain, and it was awful. No > seizure > activity, but lots of high-voltage, low-frequency activity > in > both parietal areas and in the left frontal area. No sleep > spindles, > no vertex waves. > > I also had the chance to talk to a number of US families in > the > waiting room. I had expected that (if he were just a > flashy quack) > everyone would be getting FGF. But to my surprise, a > number of > parents were told by Dr. Aguilar that their child was not a > good > candidate for FGF, and that he did not recommend it for > them. > Needless to say, they were very upset. > > When we finally met with Dr. Aguilar to go over Mike's > results, there > was both good and bad news. Pretty bad brain damage with > resulting > immaturity in other areas. But, he thought that Mike was a > good > candidate for FGF. And at that time, he gave us a > time-line of what > he thought would happen: > 1. We would see nothing for the first 4 to 6 months. > 2. Then big gains in receptive language (6 to 12 months) > 3. Then big gains in expressive language (12 months+) > 4. The last thing to improve would be his pronunciation > (it was > horrible!). > > So we started FGF on 4/19/99. I had also started getting > mercury > out of Mike at about the same time, so it is really hard to > tell > which treatment is doing what. But, I have to admit that > the time- > line of improvements has been exactly on Dr. Aguilar's > schedule! > About 5 months into treatment, his receptive language > started getting > a lot better. He has been getting FGF every 10 days since > 4/99 > (1 year, 4 1/2 months), and he now speaks in complete > sentences, > carries on simple conversations, can answer questions, goes > to a > normal school, and has little friends he plays with. I > have no > idea which treatment is doing what - mercury chelation or > FGF. I > have a feeling it is both, but I really don't care because > my son > is back. > > He was re-evaluated by the same examiner who saw him in > 4/99. His > DQ is now 80. > > The only regret I have about using FGF is that we didn't > start it > sooner. I have the same regret about mercury chelation. > > I was aware of the "no FGF in the vials" controversy before > we ever > went to see Dr. Aguilar in 1999. I also checked this out. > Having > worked in a biochemistry lab, it is not that hard for me to > understand how one actually goes about detecting > single-digit > microgram quantities of a species-specific FGF. The bottom > line > is that it is very difficult. If you are using anti-FGF > antibodies, > they have to be specific for exposed (in 3-D space) areas > of the > FGF molecule, and therefore have to be pretty > species-specfic. If > you are trying to detect horse FGF and you use anti-pig-FGF > antibodies > then you may or may not end up detecting the FGF, depending > upon > the specific "coiling" of the molecule and exactly which > amino > acid residues are exposed and how they differ between horse > and pig. > > If you are using HPLC or some other technique that does not > use > antibodies, you will not be able to detect it at all. > > I was aware that some labs had reportedly tested the vials > and found > no FGF. I was also aware that one mother (Robin Hughes) > had already > taken some vials to a very-souped up immunology lab who > used the > correct anti-FGF antibodies (to cow FGF2), and found FGF in > the > vials in the exact amounts stated on the labels. > > I have noticed that about every 6 months, this issue > resurfaces. > The last time this resurfaced, another mother (Marilu > Schmier) > wrote Dr. Aguilar and asked for an explanation. Hopefully > below > is his response. > > I am beginning to understand how mercury inhibits the > statement > of the FGF receptor on neuron cells bodies during the last > 2 months > of intrauterine life and the first 2 months of extrauterine > life. > I think these two treatments - getting rid of mercury and > FGF are > complementary. Getting rid of mercury "unblocks" any > blocked > pathways and removes the impediments to neuronal repair. > FGF may > actually help in repairing damage - I sure hope so! > > Amy > > > > > > > MY TRANSLATION: > > Dear Marylu Schmier > > Thank you for the information you sent me. > > I am sending you the following in Spanish and will send you > the > English > translation later > > Regarding Dr. Gupta's comment that our vials don't contain > FGF2, I > have the > following > comments and suggestions: > > In January 1999 Dr. Rimland informed me that they had > checked our > vials and > had > not found FGF2 in them. I asked him to tell me what method > and what > compounds > were used to check for FGF2 . He informed me that they used > human FGF2 > antibodies, to which I replied that they should have used > bovine FGF2 > antibodies. > > Because of that discussion, our team decided to run a > series of tests > to > reconfirm > the presence of FGF2 in our vials. The results of our tests > weere > published > at an > international conference conducted at the end of 1999 in > Pittsburgh by > the > HEALT TECH INSTITUTE. Several FGF2 experts were present at > this > conference and presented their own work. We presented our > tests to > detect > FGF2 using ELISA tests and bovine FGF2 antibodies. The > results of our > tests > showed > that the antibodies can certaintly detect quantities of at > least 5 to > 10 > microgams, > but cannot detect smaller quantities with certainty. > > We also compared our bovine FGF2 with that distributed by > Sigma > chemical > company using HPLC detection. This test showed that our > FGF2 and > Sigma's > have the same > retention period, which means they have the same electrical > charge. In > this > test > we also measured its resolution limit, that is what is the > smallest > concentration of bovine FGF2 that the HPLC equipment can > detect. The > results > of this analysis showed that amounts > less than 5 micrograms per milliliter of solution could not > be > detected with > certainty. > > As to the question regarding the best method to determine > the FGF2 > concentration in each vial, > we decided to run several tests using the most common > methods (Lowry, > Bradford, and > detectition at 280nm in a spectrophotometer). The results > showed that > the > most reliable method to detect FGF2 was at 280nm, which was > also very > efficient in > quantifying FGF2 and other proteins. > > Furthermore, the test using polyacrylamide gels (PAGE) > showed that the > the end result after the process of purifying FGF2 (the > concentrate > prior > to bottling in the vials) showed two bands, one of ~17 kd > and another > of > ~16kd which > suggests that our FGF2 has a large amount of native form > FGF2 (the > weight > of > the native form, or basic form, is 17520 Kd) and another > smaller > amount of > the > truncated FGF2 of 16Kd (it is well known that FGF2 has a > native form > and > several > truncated forms which are highly active, and that the > percent mix of > native > and truncated forms varies depending on the process used to > isolate > and > purify it, which accounts for the different > molecular weights of the FGF2 produced by different labs, > which > usually > range from 17kd to 14kd). > > Given the above, we are absolutely sure that our vials > contain bovine > FGF2. > The results can be looked up on the following site: > > > http://azteca.metropoli2000.com/iinedec/articulos/pit1999.html > > Recommendations: > > I believe the following must be used to detect bovine FGF2: > > 1. The correct antibody (anti bovine FGF 2 or basic FGF) > must be used. > This antibody can be obtained from R&D systems since it is > not in > ordinary > catalogs: > > > > R&D Systems Inc.614 McKinley Place N.E.Minneapolis, MN > 55413Tel: 1 > (800) > > > 343-7475Tel: 1 (612) 379-2956Fax: 1 (612) > 627-0424Email: > > > @rndsystems.com > > The lot number we are using is Lot Q159021 and can be > obtained at : > (800)328-2400 > > 2. Must use 5 or 10 micrograms of FGF2, which is one or two > vials. > > In order to do this correctly, we recommend freeze-drying > prior to > doing the > tests. > > 3. To detect using HPLC equipment, we recommend > freeze-drying and then > putting in a suspension of 20% "acetonitrilo"and 80% TFA at > 0.1%. The > solution must be no more that 10micrograms > per milliliter. We recommend 20 micrograms/ml. > > To conclude Marylu, please request Dr. Gupta to provide the > method, > compounds and results of the supposed tests which I > personally > requested > from Dr. Rimland, but he never sent them. > > I will be more than willing to clarify any doubt and I am > ready to > meet at > any lab with Dr. Gupta or other scientists to demostrate my > results. > > END OF TRANSLATION > > > |