It’s heartbreaking every time that someone contacts us about their experiences at the Burzynski Clinic. However, some people have tried to turn their experiences (or their relatives’ experience) into something positive. That is the case with today’s story.

In mid-November, a message appeared in the mailbox of the Skeptics for the Protection of Cancer patients:

I have paperwork and documentation from my aunt who died in 1998 or 1999 about the Burzynski clinic and problems she had. I am happy to mail you a copy if you would like. She passed away in 1999.

Wilma had adenocarcinoma of the pancreas with liver metastases. She’s at the end of her course of treatment of a disease with a horrid prognosis, and one might imagine that she was looking for options. She went to the Burzynski Clinic.

According to the letter about the Burzynski Clinic that was sent to the Better Business Bureau by Wilma’s niece:

My aunt, [Wilma G.], was a patient at Dr. Burzynski’s clinic for a cure for liver cancer in 1997 and continued treatment in 1998. She died in 1998. Now that we are going through her records (her husband recently passed away), we found a file on the clinic, with a lengthy complaint letter detailing miscommunication of the part of the clinic as well as lack of follow through and proper care once the treatments were paid for (upwards of $20,000). There was no other correspondence other than a letter from the clinic stating that they would, “look into it.” This complain letter stated that she was withdrawing from the program due to their inept ability to communicate with her as well as her doctor in Florida. I just felt it was important that this be on file in case other people are interested in the clinic and want to check their reputation.

We reproduce the letter from Wilma to Stanislaw Burzynski in its entirety, and include a link to a scan of the original.

February 10, 1998 S.R. Burzynski, M.D., Phd. 12000 Richmond, Suite 260 Houston, Texas 77082 Dear Dr. Burzynski: My name is Wilma [G.] I met you one day with Dr. [Conde?] just before we left Houston for Florida. We started your program in mid-November 1997. The second day my temperature was 103.2 and I was taken off the antineoplastons. The next day, my temperature was down to 99.[?] and the medication was resumed. All went very well. I had no symptoms, high energy and had total confidence in your program. We were told it would be necessary to drink from one to two gallons (preferably water) a day in order to wash the salt contained in the antineoplastons from my system. This would be thru the night as well as during the day. It also translated in being up every 1½ to 2 hours, as well as making it difficult for any food to stay in the digestive system long enough for any nutrition to be extracted before it, too, was flushed out. Consequently, I became weaker and weaker and fatigued from so little rest. Shortly before the end of November we were discharged to come home. The first part of the [???] was okay; however when we attempted to ask questions relating to our individual needs we were told to please not interrupt because she could not pick up where she left off. It would seem to me it would be more #2 Dr. S.R. Burzynski, M.D., Phd. important to be sure that each patient (or research client) was carefully informed than to hear a speech that was performed by rote. When I asked specifically about which food to eat and which ones to avoid, I was told no cows milk and very little cheese–these allowable were on the list. She thanked us for being so understanding–her child had been sick during the night and she was sleep-deprived. It never occurred to her that so were we and we were being sent home with less than the adequate information we needed. After we arrived home, all my energy was gone. I could not get out of a chair without help. I had to be bathed. I could not walk without help. Dr. Kahn was our associate doctor–we had personally talked to him on several occasions and at least he knew who we were. I went to my personal physician here in Jacksonville because my physical condition was deteriorating so rapidly. She asked if I would like for her to call your office–which she did and asked for Dr. Kahn. She was told he was no longer there and my file had been transferred to Dr. Basil (spelling?). When she was transferred to him (I was in the room she was calling from) he had no idea whether he had the file or what was in it. After locating my and [???] lab reports, he prescribed injections of Solumedrol to be administered by home health nurses. I had just completed a prescription of medrol orally. The arrangements were made by my local physician and treatment immediately began. I have never been informed that I was being #3 Dr. S.R. Burzynski, M.D., Phd. transferred to another doctor on your staff. This should not only be a professional requirement but a common courtesy consideration. Your monitor nurse as well as Dr. Kahn called frequently. It would not have even required a special phone call. Before we came back to Houston after the first of January, we had another CT-scan made. Sending an original to you several days ahead of our arrival. When we arrived at your clinic, we were told the lesions had expanded 37%. There was no explanation as to why this could have happened–just that it was strange. We came home and visited the local oncologist who had originally sent us to MD Anderson. He asked us to have another CT-scan made which we did on 1-19-98. We Fed Exd an original to you immediately and told Dr. Basil it was on the way to him. About a week later he asked if we had sent it. We reminded him of our conversation. He left the phone and came back confirming that you did indeed have it. We told him that local radiologists had found no change in the lesions. We still have received no feedback from you regarding a possible misreading on Jan 1 or of the one on Jan 19. What is the point of sending them to you if no one looks at them? Enclosed are copies of imaging services consultation reports for the two CTscans referred to above. Also, enclosed is the blood work report from the local oncologist in mid-January. Some of the markers are still way out. I was still very orange and very weak at this time. Dr. Basil prescribed the second week of Solamedrol injections and resuming the #4 Dr. S.R. Burzynski, M.D., Phd. antineoplastons. I declined for several reasons: My body was getting weaker and painful too little or no feedback as to what should be happening versus what was happening to my body. My body needed a rest from the bombardment and consequent decline it had experienced. Dr. Basil tells us he has received no lab reports since 1-4-98. Since you have LabCorp personnel on premises, all that is necessary is to request a computer print out in your own lab. LabCorp here in Jacksonville is sending all of the reports to you again. It appears that the major problem stems from the identity I seem to have at your institute–a sheet of paper with a number from which I’m being diagnosed and prescribed- rather than being listened to or lab reports and CT scans being read and considered. We came to you with complete trust and wish so much this were still true. We do not know what our future holds at this time. Due to all of the above, plus, we wish to withdraw from your program and will appreciate at least acknowledgement. Sincerely, Wilma [G]

Five days later, this issue has still not worked itself out, and Wilma sends another letter as she tries to settle her bill.

February 15, 1998 Dr. S. R. Burzynski, MD, Phd 12000 Richmond, Suite 260 Houston, Texas 77082 Dear Dr. Burzynski, Re: Billing Enclosed are several itemized statements which we received from you. We assumed you retained copies of them so did not bring the 12-26-97 and the 12-28-97 ones with us when we returned in January. Your staff could not find copies. None of them appear to be accurate. Here is a recap of what we have paid you [emphasis added–ed.]: Our Check No. Date Amount 4190 11/11/1997 $435 4191 11/11/1997 $12,000 4224 12/26/1997 $5,425 4240 12/28/1997 $3,050 TOTAL $20,910 LESS PUMP <$4500> Net to SRB Clinic $16,410 Dr. S. R. Burzynski, MD, Phd You have shipped no supplies in February or late January. We feel you are paid in full, perhaps more, but who knows. Please check our account and send us an accounting. We are anxious to have a final billing. Thank you! Sincerely, [Wilma G.]

As Wilma indicated, she included a number of itemized bills, and they are revealing. The allegedly missing patient records is disturbing enough, but seriously, the sheer amount of nickle and diming that goes on at the Burzynski Clinic is staggering. My eyes are drawn to all of the blood oxygen levels that were taken. In the SECOND AMENDED COMPLAINT of the current case against Burzynski is what the TMB alleges are more than 40 medically unnecessary blood oxygen tests.

This is why this site exists. So that patients’ experiences can be put in the context of other stories to build a picture of the Clinic. We’re bigger than the actual Burzynski Patient Group and we have literally hundreds more stories to tell. Special thanks to Wilma’s family for sharing these documents with us.