Anyone on Kutapressin? If so how is it going?

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Dec 20, 2005.

  1. HppeandMe

    HppeandMe New Member

    Kutapressin is back. Is anyone on it? I am definately going to get on the band wagon before I fall off. Please let us know if you are on it, how long you have been on it, and how you are feeling. How much of it are you taking?

    I am also going to go find an article and post it here about Kutapressin. Its really worth the reading. The article is actually somewhere on this website but not in the posts.
  2. LdyM

    LdyM New Member

    Yes, Kent Holtorf at L.A. FFC started me on 1CC twice a day about six weeks ago, for EBV and HHV6. Nothing yet!

    Glad you posted this, as I wonder why more are not on it.

    Merry Christmas to you! **LdyM
  3. HppeandMe

    HppeandMe New Member

    Hi I am so glad that an FFC doc put you on this. The doc in PA said that they are not giving it to FFC patients. So I left the FFC and got it from and I am getting it from another doc. I hear it can take a while to kick in so don't give up. Good Luck and please do keep me posted on your progress!!
  4. HppeandMe

    HppeandMe New Member

    By the way, I posted the Kutapressin article I found. Do a search under Kutapressin Article or just Kutapressin and you will find it. Please bump the article for more to see. I really hope we do get more responses from people taking Kutapressin.
  5. LdyM

    LdyM New Member

    Hi, Thanks for the encouragement. Let's do keep in touch! Sometimes I feel like I'm throwing my $ away.

    How long have you been on it?
    How many injections per day?
    How much per injection?
    How are you feeling?

    Looking forward to hearing from you and others too! **LdyM
  6. HppeandMe

    HppeandMe New Member

    I am waiting to receive my prescription in the mail. I haven't started it yet. I am anxious and if it works I hope I can hold on long enough to my job until it does work. Let's keep in touch. I am surprised that the ladies who were taking Kutapressin before back in October and November didn't answer. Perhaps they are feeling better and no longer log in. If this happens to you please log in and let me know.

    Take Care,
    Hope
  7. LdyM

    LdyM New Member

    I sure will Hope and I am looking forward to what you have to say about it!

    Good Luck, **LdyM
  8. ulala

    ulala New Member

    I have been a patient of Dr. Holtorf's since Nov. 9. He wanted me to start Kutapressin but I just can't afford all of these things at once. How are you doing? Have your visits been as expensive as mine have been?

    I'd love to hear your experiences. Thanks!
  9. LdyM

    LdyM New Member

    Oh my goodness, yes! I am already in about $5,000 with only Kaiser ins., which of course will cover none of this.

    It gets kind of scarey. I figure it will be about $15/$20 thousand in the end. I'm taking it one payment at a time, because I really don't know what else to do. I've been debilitated with CFIDS for over 11 yrs., and feel this is my last hope.

    I too have to turn down some of his suggestions, although he does try to work with me regarding cost. I think he is a sincere doctor, and I believe in him as a person.

    I'm doing the Heparin injections as well as the Kutapressin and hope I will see results, as nothing has changed as yet with all the hormones, etc.

    I found I can save money by seeing DeeDee White the Nurse Practioner at $185, verses $245 for Dr. Holtorf. I tried this on my last (4th) visit, and it worked out fine. He steps in at the end of the appt., so you actually get to see him also.

    I think I will continue doing it this way, unless I have something important I need to discuss in depth with him.

    His office visits are more expensive than the other FFCs, but we are getting the real deal, so let's hope it's worth it!

    Love to hear your experiences and opinions ulala!

    Merry Christmas to you! **LdyM
  10. HppeandMe

    HppeandMe New Member

    I haven't even begun the Kutapressin and in over 2 years have already spent well over $15,000 to try and find help. I am going to give the Kutapressin a try as well as it is my last hope. I am so scared as I am so close to losing my job, my home, and my husband. This just isn't fair for all of us! Insurance hardly covers a thing!

    LdyM my doctor had also recommended the Heperin but I was scared to take it. Why did he decide to put you on it? What else are you taking?
  11. LdyM

    LdyM New Member

    He put me on it because I have hypercoagulation. It's a fibrin build up in the blood vessels, where the pathogins hide. Holtorf said Heparin first to expose the viruses, then kill them with Kuttapressin.

    I'm also on all the usual FFC hormones and supplements.

    You hang in there now and let's don't let the fears get to us!!

    I HATE being sick!!!! **LdyM
  12. moonlightkitty

    moonlightkitty New Member

    After about 3 weeks of trying to get a straight answer from my doctor on whether he'd write me a prescription for this, he finally did. I'm waiting for the pharmacy to order it now.

    I was reading some messages on the Kutapressin yahoo group, and some who've benefitted from it said they only felt benefit at 2cc's a day, and it wasn't worth taking at 1cc.
  13. LdyM

    LdyM New Member

    That's what I take... 2CCs per day, in two separate injections.

    Thanks for the info. I am going to try to find the Kuttapressin Yahoo Group.

    Good luck and keep us posted on your results!

    Happy Holidays! **LdyM
  14. LdyM

    LdyM New Member

    Hey, I can't find the Kuttapressin Yahoo Group! Can you help me find it??

    Thanks, **Ldym
  15. ulala

    ulala New Member


    thanks for your response and experiences. I just took my first dose of heparin about ½ hour ago and am feeling really strange. I have allergic reactions to a lot of medications so I took some Benadryl and I'm just waiting, hoping that this will pass so I won't write too much.

    I'm feeling a little better so I'll keep going. My first visit was just under $800.00. I had several IV's, one of them was silver, I think I got a shot of pertussin, Kutapressin and something else. The next two days I was really sick and didn't leave the house. After that I felt better. I guess maybe I was herxing.

    My tests came back positive for HHV-6, CMV virus, Epstein Barr-they were all really high. My coagulation was bad so that why the Heparin. My Lyme came back negative, but I have been taking Minocin for a while.

    He also had me purchase NT Factor and Energy Factor which were very expensive for me. I don't think they did too much. He started me on T3/4. I had been on a low dose of Synthroid which seemed to be making me gain weight. It definitely stopped my hair from falling out.

    The T3/4 was OK but seemed to drag me down. he also prescribed Namenda and gave me a four week sample pak. That does seem to help me with the brain fob but was also making me a bit tired. As I went up on the dose I was hallucinating when I closed my eyes at night. It was really strange, I was seeing cartoon hallucinations. It was somewhat entertaining for a short time but a little disconcerting after awhile so I lowered the dose and the hallucinations have stopped. I did seem to start reading more and words came to me more easily when writing.

    I was then scheduled to see him on Dec. 9. His office called a week before and said that he was not going to be in that day and I could see Dee or else wait until January to see him. I was not happy about that because I really wanted to see him and get his opinion of my results. I made kind of a fuss and then they miraculously found an appt. with him. I was charged $385.00 instead of $325.00 as I was told.

    He started me on T3 and gave me 5 pills and called in a prescription for Cortisol. He also gave me Estrogen cream and Progesterone pills. I got them for ITC Compounding. They then had my credit card on file. I never told them to fill the Cortisol prescription but then it came in the mail. I called ITC to tell them that I did not want it and had not ordered it. They said their policy is to immediately fill the prescriptions that he sends to them. They said I have to call his office to get a credit. I have called about 4 times regarding that and also to discuss the T3 was too strong for me (50 mcg.) They have not returned my call and I started calling them last Friday. Today I will call my credit card company to dispute that charge. I don't like to do that but I am in no position to pay for meds that I cannot take and my regular insurance would cover meds like that

    I think Dr. .Holtorff is very aggressive in his treating and that is good, but it seems for me that I respond to very small doses of meds so I just cut the capsules sometimes into quarters and use much less of what he prescribes.

    At my last (second visit) they had Transfer Factor 6000, chelated iron and pregnenalone ready for me. I had decline on all of them because of The expense. The Transfer Factor was 134.00. I will buy it but will buy it on the Internet and search for the lowest cost. They seemed to be a bit miffed that I did not buy my supplements from them.

    He has also recommended The Kutapressin for me but The Heparin, T3, Progesterone, Testosterone (from another doctor), Namenda, Estrogen cream are enough for me to start on. My insurance paid for The Heparin and I will see if they will pay for The Kutapressin.

    I had Kutapressin about 10 years ago from another doctor and it didn't do anything but I was taking a low dose so I will probably try it if my insurance will pay.

    I think it was DeeDee who gave me two shots in my butt on The first visit. I told her that I had sciatic problems and to please stay away from The nerve. She told me that she had been attacked by a dog and also had bad back problems and would be very careful. She kind of did The shots from The side on both sides but sure enough she hit that nerve on both sides. I had to take some prednisone when I got home because The pain was so bad.

    All in all I think Dr. Holtorf is on The right track, he is willing to experiment but from my experience I have been on my own after they prescribe The meds because I really needed to talk to them about some fo The meds and they have just not returned my calls which I find rather strange.

    I have asked some of my regular doctors to prescribe some of The meds like The T3 and Heparin and they wouldn't so if I have a problem with them I don't want to tell them that I went too another doctor and am taking them. This gets a little dicey when there are problems or side effects. This is where The Internet and this site are so helpful.

    It's great to hear other people's opinions on these centers and The meds.

    I live in Brentwood and dancingstar, who also lives in Brentwood started with Dr. Holtorff at about The same time that I did. She was posting but has stopped since about the end of Nov. Maybe she got much better. I was hoping to talk to her.

    Anyway I must be feeling better after my initial reaction to The Heparin since I have probably written my longest post ever!

    I will have to go back and read your posts again. Unfortunately we can't read The posts while posting. Please keep posting your experiences.

    I think that you have to be wary about The high expenses because, from my experience, they will pile The bill up very quickly. If you can afford it that is one thing but to try things like some of his supplements instead of less expensive one's on The Internet for me is not in my best interest. He has his supplements custom made for him and he wants to sell them not have them sitting on The shelf.

    Just my experience and opinion. I can't believe how long this post is. Oh the $15,000 that someone has spent is that just at the FFC or overall expense?

    I've had this since 1991 so I'm sure my total is very close to that number.

    I hope that we all will get better with guidance from the FFC and the many sharing and caring people here!
  16. moonlightkitty

    moonlightkitty New Member

    Hi LdyM,
    Ah, I didn't realise you wrote twice a day... blame the fog yet again :s. Yeah I couldn't find the group by searching, but luckily someone else showed me where it was. Don't know if I'm allowed to post this URL but here goes:
    http://health.groups.yahoo.com/group/Kutapressin/
    I'll remove it if there's any problem.
  17. spacee

    spacee Member

    I took Kutapressin for years. I would have been unable to do much of anything without it. I took 2 ccs at the same time. It didn't seem to matter the type of syringe and the latter years I used the small allergy syringe with the same results.

    I was also taking 5,000 mcgs of Vit B-12 by injection (had to be obtained by a compounding pharmacy. I took the B-12 Monday, Wednesday and Friday.

    Eventually, I started taking the Kutapressin and the B-12 at the same time on the same day. Over time I felt that it worked better this way. To my surprise I read that Dr. Enlander (see home page), prescribed a combination of Kuta and B-12 and something else to his patients.

    Later I read that Dr. Cheney had a patient who took 4 ccs of Kuta at a time in order to be able to work. Well, I had a son getting married and with all that I decided to take the Kuta like this: 4cc first day, 3ccs 2nd day, 2 ccs third day and 1 cc on the day of the wedding. THAT is what got me through it.

    Now, I am taking Immune Transfer Factor C which targets the same viruses. I am doing much better than when on the Kuta. I no longer take the B-12 injections.

    Not everyone is the same (as we well know). Other's have not done as well on the TF.

    Hope this info helps.

    Hugs, Spacee
  18. LdyM

    LdyM New Member

    Hi there, Thanks for the help. I did find the yahoo group site.

    Happy New Year! **LdyM

  19. LdyM

    LdyM New Member

    Hi ulala, Thank you for the long post!

    How is the Heparin going? I felt sick with die-off when beginning. Holtorf said that was a good thing, as people without a fibrin problem would feel no reaction whatsoever.

    Nothing new here, just plugging along with the usual "feel worse in the winter" thing. I wonder about dancingstar?

    Let me know how you are doing, okay?

    Happy NEW Year!! **LdyM

  20. HppeandMe

    HppeandMe New Member

    Hi Ulala-

    The $15,000 was not spent on FFC alone. No I have spent the most money with Dr. T. Dr.T recommends the Heparin for me but did not test me for the blood test. What is that test called to see if your blood is to thick? I would like to have that done before I go on the Heparin.

    Thanks for your help!
    Hope