calling paulalbert re. dr. enlander's pharmacy

Discussion in 'Fibromyalgia Main Forum' started by annepat, Aug 29, 2003.

  1. annepat

    annepat New Member

    paulalbert,

    do you know who compouds Dr. Enlander's KU, are they compounding the hepatopressin? Is he calling the end product hepatopressin?

    I was thinking that rather than deluging his practice with phonecalls, you could post the name of his compounding pharmacy. I'll dig out my Ku substitute pharmacy faxes, and emails, call Dr. Enlander's pharmacy, and make sure that we are talking about the same thing. I can post the response.

    when I spoke with him on the phone, I heard him call it hepatopressin. He said it was a beef liver extract; I know that he compounds Ku with glutathione ect., so I'm wondering if he's using the name hepatopressin for compounded drug.

    annepat
  2. paulalbert

    paulalbert New Member

    I have never been paged before. I will indeed speak with the doctor next appointment and ask him where he gets the stuff and ask for the compounding pharmacy. That appointment is in a couple more weeks yet by the way. I hope he has something to share with me.... One more thing: I am a little confused when you said "he compounds Ku with glutathione etc.." If you are referring to the folic acid and other vitamins that Dr. E sometimes includes in each shot with the kutapressin before and the hepatopressin now, I think you are mistaken. Hepatopressin is not a mix of different substances. It is as far as I know chemically similar to kutapressin and without any helpful additives such as vitamins (which I do not take by the way because my body still can't handle that).

    Paul
  3. annepat

    annepat New Member

    Hi paulalbert,
    thanks for the prompt response!
    I am trying to confirm that the beef liver extract that is being used by Dr. Enlander and, via another usergroup patient, by Dr. Lapp as a substitute for Kutapressin (KU) is the Argentine beef liver extract. It is certified as BSE free. I need to double check this, but I'm quite sure that compounding pharmacies who are approved to compound injectables can order and distribute this product to KU patients.

    Information on a possible KU substitute from an undisclosed compounding pharmacy:

    “…a soluble beef liver of Argentine origin (certified mad-cow free; BSE free) that we use in our product that is VERY similar to the Kutapressin. It is a soluble beef liver that also contains trace amount of 17 amino acids..."

  4. dove1

    dove1 New Member

    Thank you for all your work. Just a note of clarification.. Dr. Lapp wrote me back and states there is no substitute for kutapressin and he does not use beef liver extract in his practice. Since I am following the kuta issue closely I look for yours, CMA's and PaulAlbert's posts since we are all on a similar quest.
  5. annepat

    annepat New Member

    I'm going to discuss the Argentinian beef liver extract with 2 of my physicians next week.

    I think that paulalbert has his appt. w/Dr. Enlander in the next several weeks-hopefully, we can get the name of his compounding pharmacy.

    If I understand correctly, Dr. Lapp did not use Ku in his practice?

    Does anyone know what Dr. Cheney is doing?

    annepat
  6. dove1

    dove1 New Member

    Annepat, Just clarifying that Dr. Lapp DOES use kuta, just does not see that the beef liver preparations are a kuta substitute at this time. Thanks for Discussing the beef liver product with your docs and I would love to hear what they say, along with PaulAlbert's response on Dr. Enlander's pharmacy.
  7. annepat

    annepat New Member

    i'll let you know about the beef extract. Thanks for the info on Dr. Lapp-very foggy today.

    What is Dr. Lapp using as a substitute for Ku? Did he say?


    I'll let you know about the Argetine beef liver extract. After Ku, my docs are pretty leary about glandulars.

    How is everyone w/out Ku?

    annepat

  8. cma331

    cma331 New Member

    Thank you all for all the info you have been posting.....I joined the Yahoo KU discusion group and are waiting to hear from them.......I'll let you all know....
    One of you ended their letter with my topic; which was a wonderful question.....
    I would LOVE to get some feedback on that......
    I "had" been on KU for 5 years.....Had my good and bad days; but did have some semblance of a life.......Sometimes for weeks on end....i was able to do "something" each day.........
    Was not able to get any extra, so have been off it pretty much all summer..... I had 2 bottles; which i was "stretching"......
    I have been soooooo sick.....I hate to whine; but have been crying all day.....I live alone; and really believe i can not go on like this.....The non functionable fatigue; pain; flu life symptons; depression....just get worse......My Dr. is Susan Levine;specialist in CFS/FM, also from Manhattan, so if Dr Enlander has anything good going ; i,m sure she will know.....I told her about what i read on the board; but right now she is sticking with the Amantadine., as a sub......She does fear the regression we can have w/o KU.....All her patients that were on KU are sick......
    Guys; please remember my post about CFS awareness day......We need #'s here.....to get the word out how many people are suffering.....We need money for research....
    We do need to be the ones to speak to our representatives in Washington.....they have to hear us........
    I look foward to reading your posts; and getting educated.....
    Thanks, Carole
  9. annepat

    annepat New Member

    i've already posted most of this, but I wanted to make sure that ALL Ku patients have the same info.

    I'm trying to follow up on the certified BSE free Argentinian Beef extract. I will post as soon as I can confirm w/paulalbert

    Ku substitutions.
    I'm on Imunovir-I started it in Aug. 0f 02. It is helping, but it has been a rough herx. I work w/three docs, 2 are new to my care (2 forced out of practice, third brought up on charges for use of alternative medicine-ie Iv's for CFS fibro)so finding physicians who are willing to work with CFS fibro lyme patients is a real challenge in my state, and the stress of it probably hasn't helped. Imunovir is working-we do notice improvement in brainfog, and sequential processing, but with the additional Ku concerns, we are not sure about what we have been treating-Imunovir has helped the Ku shortage crash-I haven't lost all of the sequencial processing and brainfog gains, my we are really working at it, and I am loosing ground and have taken big hits on the infection front. I'm concerned thta the cognitive gains will be next.

    I think that emotionally, this has been a huge hit. At times it is overwhelming-it's also been very frustrating to try to find people who are willing to help. Three attorneys from a state nonprofit consumer healthcare concern have emailed me to tell me not to email them any more information on on the KU situation-they are not interested, and they will not respond, as it does not fir with ntheir political agenda.

    IV Glutathione. We are combining glutathione and mag B vitamins and trace minerals in Push IV's thta I receive weekly to bi-weekly. Key is to individualize the protocol, and to build up the various ingredients slowly, qand one at a time.

    Injectable ATP/glutathione. I've been on this for 3 1/2 years-it helps, and we are increasing the frequancy/amount of the injections.

    WHAT are other KU physicians doing?

    Antibiotics-I was already on antibiotics, we are keeping me on them.
    Have any other Ku patients tested + for Mycoplasma pneumonia recnetly? Any other + tests? any test changes? Are your physicians retesting viral titers?

    My health insurer is having numerous "billing errors" with labs thta diagnosis expensive to treat illness-and we need to preserve my remaining good veins-so we are trying get as much bang for our buck out of bloodtests. Do Ku patients need additional testing, if so, what tests shoudl be run?

    Mycoplasma pneu. test. mine was a PCR test that was seny out to the MAyo clinic. The Mayo clinic lab acccepts all major insurance carriers.

    The bulk of my KU came from the 7-03 batch lot-we started to notice injection site problems back in January 02-the price increased, and the pharmacy changed wholesaler distributors-the wharehouse conditions thta my Ku was stored in and the shipping conditions may have changed-did anyone else notice any changes?

    We thought thta I was having an autoimmune response to the KU, or that KU was loosing it's effectiveness, or that it was being stored/shipped improperly (I worked in the packaging industry-biotech and drug wholesaler distributors were some of our cutomers). We thought thta maybe Imunovir was problematic (on the good side, Ku shortage makes my current Imunovir response easier to interpret).Did anyone notice any changes while on KU? If so, what were they?

    Do we know how many patients were using KU, and how many physicians were prescribing it? By not working w/us, Schwarz is creating a lot of extra work for all KU physicians-it's like they are trying to confuse things.

    Public citizen is interested, but all of these organizations have gatekeepers that we need to get through.

    I need help with a Ku summary. Please advise/assist.

    I'm crashing-I'm feeling overwhelmed by the lack of response from the people designated to help me, I'm scared, and I need to concentrate on getting through this myself, and I need to protect my doctors-they are fed up and on the verge of abandoning medicine in this state. Many of them already have...

    Lots of variables when you are dealing with such a convoluted system that has no easy pharmaceutical product return policy!

    annepat