Date:
Thu, 27 May 2004 06:24:32 -0500

Let me tell youa bout my daughter Lindsey, who is 17. This could be long so bear with me. If you remember, I contacted you last summer about Glutathione. Lindsey had been having a decline in her PFTs for about 2 years. Her FEV1 at that time was in the 30s and 40s. It was like I was seeing her decline and no one could tell me why (other than she has CF). She had no unusual cultures and even though she would have an exacerbation of symptoms her culture counts and xrays didn't match. Some of what she did culture was psuedomonas, staph, aspergillus (low count), candidas and stenostrophonomous. None of these were resistant to anything. Lindsey was taking usual CF meds including Tobi and Pulmozyne. She was on Tobi continuously (no days off). They would also put her on Bactrim at times when symptoms increased. She also was having daily hemoptysis. We were going in the hospital every 2 to 3 months.

Well, for whatever reason, Lindsey would not agree to starting Glutathione. We had been through a tumultuous time with her. That is another story but let me just say she was really tormented emotionally as a teenager with CF. A lot of anger, depression, rebellion, etc. I chose just to bide my time and pray that she would agree to start the Glutathione.

In September of last year, Lindsey was really sick and went in for IVs. Her FEV1 was in the low 30's. After 2 weeks of IVs we were not getting better. Lindsey has several antibiotics that she is allergic or sensitive to. Cipro causes a terrible rash and Timentin causes Hemorrhagic Cystitis. This is all we knew of at the time. Well, one of her doctors decided that we should try Amphotericin B. I don't know if you know about this drug but I am a nurse (for 20 years +) and years ago it was only given in ICU.

The staff assured me that they would monitor her closely and they would give a test dose. Nervous but desperate for Lindsey to get better, I agreed. She was also changed to Zosyn and continued with IV Tobramycin. The test dose went fine. They premedicate with Benadryl and Tylenol. The first full dose went fine. The second dose she ran a slight fever but it resolved. They give 1 dose a day. Everything seemed to be ok until the 5th day. Lindsey starting running a fever of 104. She broke out in a rash from head to toe that looked like her skin would bleed. She went into Acute Renal Failure and on her lab (a full chemistry panel and blood count) she did not have 1 normal result. Her magnesium and potassium levels were critical and she became neutropenic so that had to put her in reverse isolation.

They immediately stopped the drug, actually all antibiotics and began giving her electrolytes to currect the imbalance. We were in a total of 4 weeks before things returned to normal. In fact, Lindsey had not had a hospitalization for less than 3 weeks in a while. Her doctor came in and said that we should just go home and give her a break from the hospital and let her enjoy being 16. Her FEV1 was 28%. This felt so hopeless. We were supposed to follow up in 5 weeks with the physician who normally sees her in clinic.

We went home on no antibiotic therapy. They stopped the inhaled Tobi, the zithromax, and the bactrim because of her kidneys. Needless to say within about 7 to 10 days after being discharged, Lindsey was getting worse with her cough and mucus. I knew we were getting in trouble. I called the clinic and of course they said that I needed to bring her back in and admit her. Lindsey refused to go back. She said "Mom, I can not emotionally, spiritually or physically handle going back". She said it would be ok and SHE WOULD START ORAL GLUTATHIONE. I was so happy but something made me feel it would not be enough to bring us out of this.

We started it anyway after I contacted Dr. Bishop and verified the dose. We had about 3 weeks until we were to go to clinic. The doctors did put her back on Bactrim and a week of prednisone. She did start improving and I wasn't sure if it was the antibiotic, the glutathione or the prednisone. I wasn't sure of exactly how much improvement we were making until her clinic visit. She did PFTs and her FEV1 was 65%. She had not had that high of an FEV1 in almost 2 years.

Her doctor was amazed. He said he had planned on talking to us about going to Houston to be evaluated for a lung transplant but based on the FEV1 was not prepared to do that. He said the key would be to see if it was sustainable. He wanted us to go back on Tobi inhalation and said that he could not officially recommend Glutathione but as long as I didn't abandon "traditional" therapy he would not tell me to discontinue it.

We started back on Tobi and within 5 days Lindsey began having hemoptysis. It was then that I realized that she had not had any hemoptysis since they stopped it at the beginning of her hospitalization. I called the clinic and told them and they said to stop it. She no longer takes Tobi and no longer has hemoptysis except rarely when her cough and mucus increase.

We have been on oral glutathione since October. She has been in the hospital 3 times since that September hospitalization and 2 of those were only 2 week stays before returning to an FEV1 in the 60s. Her doctors include in her orders to give home meds of Glutathione, NAC and Selenium. The doctor we usually see had no problem with this but the other physicians did at first. I adamantly pointed out that my insistance in continuing the supplements was in no way comparable to the damage they had done to my daughter with Amphotericin B and that they had no argument with me when what we all want is to maximize her health and I was having better results with my therapy than they had and together we could get help her be the best she could be. I have not had an argument since.

Our last hospitalization has just ended. It came after an overseas trip that Lindsey had long wanted to take. It was a religious pilgrimmage. Before the trip she said that she wanted to start inhaled glutathione but we decided to wait till after the trip since we would not be able to do aerosol treatments while we were away. The trip was wonderful but it took its toll on Lindsey. We were in for 4 weeks. I think mainly because it took almost 2 before they could find the antibiotics that would work. They tried Zosyn again and she broke out in a terrible rash. We now think this was what caused the rash in September but we blamed the Amphotericin B. Her FEV1 was 56% when we were discharged yesterday.

After a few weeks, I am going to start her on inhaled Glutathione. We will evaluate things but Curcumin is on my list. Also, I asked Robin about Magnesium. I have been reading a lot on the Cystic L list about lung ph, magnesium and aspergillous/candidas. Lindsey's Mg level is borderline low. I know that antibiotics, albuterol, etc can affect this and she may improve after coming off of the antibiotics. Also, she is having some elevated blood sugars and we will be having some tests on her glucose in the coming weeks.

We thank God every day for glutathione.

Pam B.
Mom to Lindsey 17wcf