Saw New Doc Today RE: Peptide Injections

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Mikie, Apr 4, 2011.

  1. SweetHart

    SweetHart New Member

    Wow. Reading what you have going on with you sounds just like reading about myself. I've had CFS for 20 years, FM for about that long, and Sjogren's for the past year and a half. I also have many allergies and asthma. I've also been having HBP since the Sjogren's showed up. It's weird and inconsistent.

    I have seen two different doctors mention on this thread regarding these shots. How do I find out more about them? I'm not sure where to go find this info but I'm very curious.

    Also, are there any risks or side effects from these shots?

    Thanks!


    [This Message was Edited on 05/06/2011]
  2. Mikie

    Mikie Moderator

    I have had a very difficult time finding info online about these injections. The two docs, Dr. Dakos and Dr. Gomeringer, in Fort Myers, FL are only two of about 25 docs nationally who are doing this treatment. Kelly doesn't live here but she traveled to see Dr. Dakos for the first couple of injections and now has the serum sent to her home. Her hubby does the injections for her. The handouts the docs had at the seminar were very abbreviated. The PowerPoint presentation had more info but it really wasn't comprehensive.

    According to these docs, the injections have been used for 35 years in Europe with virtually no adverse side effects. Dr. Dakos had a very aggressive form of cancer which was undetectable following his injections. That is what got him interested in them.

    I'm sure there are biochemical notations for each peptide sequence because I saw a couple in the slide show but unless one is a biochemist, it is lost on one. The explanations I have provided here are about the only things I've been able to turn up. It's a very simple theory and treatment but the engineering of the peptides in the lab are complex. I just hope and pray my poor old body is capable of internalizing and synthesizing the proper peptide sequence even if it takes a year. We should have some idea by the third injection whether they will help me. More than 90 percent of patients are either helped or end up with no trace of their illnesses following the injedtions. That's pretty good odds.

    My guess is that if your doc wants more info, Dr. Dakos would be more than willing to talk to him. I'm sorry you've had this progression of illnesses; I know just how you feel. I was managing my FMS and CFIDS/ME pretty well until the Sjogren's hit. I felt just like I had clawed my way back on my feet only to be slugged in the gut and knocked down again. This is basically my last hope. I really don't want to take steroids.

    Believe me, after my first injection, I'll be posting Post Haste (pun intended :) I hope to learn more when I get into this.

    Love, Mikie
  3. SweetHart

    SweetHart New Member

    Thanks for the response! Yes, I agree that as bad as the CFS & FM were, there were far more predictable and tolerable until the Sjogren's stepped in and really messed everything up. I don't want to take steroids or any of the horrible drugs they suggest I take for the Sjogren's, either.

    Can you tell me how expensive these injections are? Are they covered by your insurance?

    Dana
  4. Mikie

    Mikie Moderator

    The injections cost $300 each and no ins. companies cover them nor does Medicare although the office visits are covered. One usually takes the first two injections two weeks apart. Then, one has one injection a month. Each person is different but I think it usually takes about 10 injections unless one is very young.

    What concerns me about Sjogren's is that it's auto-immune and could cause self-destruction of internal organs. It probably won't happen but it could. My SIL's mom has lupus and the doc told her that when auto-immune diseases destroy organs, the damage usually isn't obvious until the organ is kaput.

    Sorry to sound so grim but that is exactly why I want this treatment. That, and the fact that I'm so exhausted and in pain that I can do basically nothing. I don't want to live like this. It sucks. Sorry to whine but it's what I do :)

    Love, Mikie
  5. SweetHart

    SweetHart New Member

    Whine away! That's what we're here for! Plus, I'm right there with ya!

    I wonder if there is a way to find a dr in my area who might do this? I live in So. Cal.
  6. Mikie

    Mikie Moderator

    I believe if you, or your doc, contact Dr. Dakos, he will tell you which doc is closest to you that does these injections.

    Love, Mikie
  7. jkpta

    jkpta New Member

    to respond! I have been strict with my diet and feel like I have removed 95% or more, of the MSG and or the factory created free glutamate that is so abundant in our food supply.

    I am very happy to report that after my injection yesterday (Mother's Day) that I am feeling great! I got the shot at 8 a.m. and by about 2 p.m. my arthritis pain had diminished. I was able to put weight on my ankle without the acute pain I have been experiencing for the past year. My shoulder pain went away completely and my elbow and hands were not as stiff and painful as usual. So.... I have to say that the avoidance of MSG is very important and you HAVE to read labels strictly.

    I left a message for Dr. Dakos and he called me back on Saturday and I told him what has been going on since my 1st injection and he thought I was getting some benefit from the other shots or else I wouldn't have doubled my pain after eating that MSG (after my 4th shot.) He said you do have to read your labels and you should try to avoid MSG throughout the entire treatment period. Not just the 3 days prior to the shot and 3 days after. He also said he knows how hard it is and he didn't feel like we needed a restricted diet but to just do the best we can.

    Well, to me, we very much, need to be on a restricted diet. I don't think he has a clue how many supermarket products contain MSG and it's counterparts! I tried to tell him but he for some reason does not want people to feel like they have to change their diets drastically. I think that is the wrong attitude when people are paying so much for each injection. I am proof as to the difference it can make. I wonder how I'd be feeling if I had been truly avoiding it from the beginning?

    And you are right about eating out. You almost cannot avoid it in restaurants. Especially chain restaurants where food is prepackaged and sometimes premixed and then shipped to each location. If I go to a small mom & pop type of place, where ingredients are fresh and they are not adding it to the food from a shaker, then I feel safe enough. I always ask. Do not eat at AppleBee's. That food is loaded with msg.

    You have to watch enzymes also. No digestive enzymes or aids. He says avoid taking enzymes 3 days prior and 3 days after the injection.

    If there is only 1 counterpart ingredient in something and it is at or near the bottom of the ingredient label, then I do not stress over that. If there are several counterpart ingredients, then I will avoid it because they can add up to the same amount as straight MSG. This is what I've read so I'm going by that. I went to msgmyth.com for information.

    -Kelly


  8. zenouchy

    zenouchy Member

    So sorry to hear about your Sjorgens diagnosis. I'm very glad you found a good doctor knowledgeable about fibro and Sjorgens, which sometimes is a tall order. My thoughts, prayers and good wishes are with you for a very positive outcome.

    Love, Erika
  9. kat0465

    kat0465 New Member

    Hi mike,
    I did contact dr dakos and they gave me the name of a dr near me!!!
    Is there anything you can tell me about what will happen on the first visit? I am so excited I can't tell you! For the last year I can feel that bed getting closer and closer:(

    I know about the no msg, just wondering what will happen on the first visit

    Thanks, kat
  10. cherylsue

    cherylsue Member

    It doesn't look like you are having much fun either. Is there anything you can take to relieve the pain?

    Many hugs to you. You've been through a lot, too.

    Love,
    CherylSue
  11. Mikie

    Mikie Moderator

    Kelly, I'm sooooo glad the last injection left you feeling so much better. I have eliminated as many glutamate sources and other excitotoxins as is humanly possible. I'm even feeling better just from the change in diet. I got rid of all the processed foods and am having no trouble fixing delicious meals from natural and orgnaic ingredients. I will be starting my injections the middle of June. I'm trying to get myself built back up so that the injections will have the best chance possible of working. I owe that to you; I just wish you had known from the start about the MSG. I agree that we need to be free from it all the time and not just around the injection days. Thank you soooo very much for the feedback.

    Erika, thank you so very much for your support. I admit that I didn't see the Sjogren's coming; I was blindsided. If the peptide injections work for me, they should address the Sjogren's, as well as the CFIDS/ME and the FMS. How are you doing?

    Kat, I'm so glad Dr. Dakos could help. Read Kelly's posts about eliminating all sources of neuro-excitotoxins (mostly in the various forms of MSG) before starting the injections. Also, avoid any artificial sweetners. I don't know what to expect from the doc. The treatments are complex in the way they are produced but extremely simple in how they work for us. The doc will likely do an exam and talk to you about the injections. Good luck.

    CherylSue, with the increase in the Guai, my pain is much better and all I usually need are a couple of ibuprophen tablets. If not, I do a soak in Epson Salts and/or take a magnesium tablet. The worst symptom of the Sjogren's flare was bone-crushing exhaustion. That, and swollen lymph nodes and salivary glands. The swelling and pain in the nodes and glands is much better. I did respond to your lovely post. Thank you.

    Love, Mikie

  12. jkpta

    jkpta New Member

    Well, well, well... I don't know what to think about these injections. But, first off Mikie, I would like to say Congratulations on the organic diet and I'm so happy to hear that you are feeling better with the healthy eating!

    As I wrote last week, my pain had diminished noticeably the day I took my 5th injection and the day after I felt good as well. Then the 3rd day some of the pain began to creep back on me and by the 4th day all my pain was back just as it was before I took the injection! I don't understand and Dr. Dakos is so hard to get in touch with. I found out there is another Dr. who does these peptide injections closer to where I live and I am considering giving him a call and possibly making an appointment to see him. Dr. Dakos is only in his office on Thursdays and Saturdays and there is an answering service taking calls all the other days of the week.

    I've already spent over $1500 and I'm not sure what to do. I'm going to leave another message for him and see if he has any idea why the relief in symptoms isn't lasting. Other than that, I'll have to admit, I'm discouraged. I really thought the MSG was my issue. Wishful thinking on my part I guess.

    Mikie I really hope you give the peptides a chance. Don't be discouraged by what I'm going through. We all react differently to treatments. The reason I wanted to try the peptides is because the school nurse at my children's school took her husband to see Dr. Dakos about 10 years ago. He had RA so extreme that he couldn't walk anymore. He got about 10 injections and his RA went away. I think he gets a booster shot every year now for preventative maintenance. I can't quit thinking about him and praying that all of us will have the same results someday in the near future!

    Love, Kelly

  13. Mikie

    Mikie Moderator

    I am so sorry that the effects didn't last for you. I pray you can get better relief from the treatment. I didn't elect to see Dr. Dakos because of his advanced age and I was looking for a new PCP to have for a long time to come. Dr. Gomeringer is my PCP as well as my specialist now. This is how he explained it to me:

    He said that one can usually feel the effects almost immediately but that it doesn't usually last, especially in the beginning of the injection series, in older patients, and in people who have been sick a long time. It takes time and more injections for the body to learn the new peptide sequence. He said if one does not feel any benefit after the third injection, the treatment is stopped. He thought I'd do well as my illnesses are classic for the one particular peptide sequence. It may just be that it will take almost a year for the effects to last. I'm cautiously optimistic but not expecting great things right away.

    There are examples of teenagers who have been healed with one injection because their systems are more plastic at that age. I'm no spring chicken but I've usually done really well on new treatments.

    I think that you saw improvement is a good sign. I would also be tempted to go to the local doc to continue your treatment. As always, I'm praying for success for you. Thanks for keeping us updated. All the anecdotal info we can get here on treatments is very valuable.

    Love, Mikie
  14. jkpta

    jkpta New Member

    Mikie,

    Sounds like your Dr. gave you a lot more information than what I received from Dr. Dakos. So now I'm wondering if I should continue the injections. I've had 5 treatments and I have no lasting results. In fact I have more problem areas currently than I did before I started the treatments. The first three gave me some relief but then the 4th & 5th seem as if nothing is sticking and now more pain developing.

    I'm going to call him on Thursday and then also check out the other doctor. I have very agressive RA and a lot of damage. I think I've mentioned before that I've had it for almost 15 years. My Grandmother also had RA and she was totally crippled and confined to a wheelchair. Maybe I've had it for too long and my body will not accept the changes. Strange thing is that Dr. Dakos was so sure I would be cured because RA is all I have going on and my Rheumatoid Factor is positive. So a classic case I guess is what he was thinking.

    Oh well, I'm determined and have been for 15 years to find something other than drugs that will work. I had a lot of success with NAET treatments also. That lasted for several years and then slowly everything started to come back.

    Thank you for your words of encouragement. I'm anxious for you to start your injections. I pray it works for you quickly.

    Love, Kelly

  15. Mikie

    Mikie Moderator

    If it were me, I'd talk to both docs and try to get more info. I think it was at the seminar that one of the docs said a very rare few people take longer than others but that if they were getting some help, it was worth it to keep going. A high percent get at least some benefit. I'm so sorry that you feel even worse now. I would be questioning the wisdom of proceeding too. I have had such high hopes for your success. RA is so hard to live with. Please know I continue to pray for you.

    Love, Mikie
  16. jkpta

    jkpta New Member

    I'll keep you informed and please keep us updated on your situation as well. Many prayers,

    Love, Kelly
  17. Mikie

    Mikie Moderator

    I'm seeing the doc on Wed. to start the process and so he can order the serum to start mid-june. I may even start earler is I'm in a bit of a Sjogren's flare and whatever Herpes Virus I have has reactivated. I'm on Acyclovir again but this time, I think I nipped it in the bud. I'm just so sick of dealing with all the ancillary problems which come along with my conditions. Whine, whine, whine :)

    I need to get a bit more info on what I need to do just before the injection. I'm getting a bit excited, tempered with the knowledge that things may not go great, especially in the beginning.

    Still keeping you in my prayers.

    Love, Mikie
  18. lou

    lou New Member

    The PEPTIDE-T approach is one I've known about for sometime. Peptide-T is a specific group-
    ing of Peptides and has real promise if it ever gets to market? There are two or three big time
    research clinicians involved and more than one invention / inventor. Elaine De Freitas I heard
    is involved as well as one physcian who I know personally as a patient.
    I wish Mikie the best of luck with his supply. I may just call a local L.A. preventive doc I used
    to see and make an appointment to discuss the "broad based version" of Peptide injections.
    Best of progress,
    Lou
  19. Mikie

    Mikie Moderator

    Thanks for the good wishes. There are currently studies underway here for peptides for asthma, RA and Type II Diabetes. There may be other studies but those are the ones I found. A couple were older studies with mixed results. The peptide serum from England is supposed to have a much higher success rate. Guess I'll get to see for myself. Good luck to you if you decide to pursue the treatment.

    Love, Mikie
  20. jkpta

    jkpta New Member

    Wonderful news and I would like to hear what he has to say about preparing for the injection.

    I know what you mean about the ancillary issues. The combination of everything really begins to wear us down.

    Praying for your success!

    Love, Kelly