Saw New Doc Today RE: Peptide Injections

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

  1. Mikie

    Mikie Moderator

    He is my new PCP so he wrote all my scripts for me and added another one because my BP and pulse rate are too high, even with the meds I'm taking. I come in again in a month for a BP check. We kind of want to get the BP settled before I start the injections. He'll be in Prague in May so I probably won't even start the injections until June or my appt. in July. That's fine with me as the Sjogren's symptoms aren't especially flaring right now and I'm just a bit better.

    There is one injection which will cover FMS, CFIDS and Sjogren's. The first two are given two weeks apart and the third a month later. If, at that time, there is no improvement, the injections are discontinued. If there is improvement, I will be taking the injections monthly for a few months and gradually spacing them out and finally stopping them. Everyone's system is different. Younger patients' systems can more easily incorporate the correct peptide sequences than older patients.

    I like this doctor and, even if I don't do the injections, he is very knowledgable about our illnesses. He says I present with classic cases of these illnesses. Even though I have all the symptoms of Sjogren's, the lab work doesn't support a diagnosis yet. It really doesn't matter as far as the injections go. The one formula will work if I have it and it will work for my FMS and CFIDS as well.

    So, my friends, I don't have much to tell and won't until I start the injections but thought I'd update y'all. Thanks for your interest.

    Love, Mikie
  2. spacee

    spacee Member

    You like him, he sounds very knowledgeable. Hope these go very well for you.
    Will look forward to your updates!

    Spacee
  3. Bunchy

    Bunchy New Member

    I'm very interested in what this involves and would love to hear if they help you (I hope they do) and in what ways when you do get around to doing them.

    Do please keep us updated :)

    Bunchy x
  4. mbofov

    mbofov Active Member

    Thanks for the update. I've been wondering if/when you were going to start the peptides.

    When I was about to log onto the message board, I saw a PH article entitled: "Help for High Blood Pressure & Stiff Arteries? For Many It's Vitamin D, Study Finds". I presume you're on top of your vitamin D levels, but if not, it's something you might want to look into. I just scanned the article very briefly, it's in the list of articles right underneath where you select what message board you want to go to.

    In any event, do keep us posted about the injections!

    Best wishes,

    Mary
  5. street129

    street129 New Member

    my prayers are with u.
  6. Mikie

    Mikie Moderator

    I don't know that I'll have anything to report until I actually start the injections. He said everyone responds differently. Some almost immediately feel wonderful only to relapse between the initial injection and the next one. Others will just start feeling better all the time and, unfortunately, a few do not benefit from them. I so appreciate all the good wishes.

    I do supplement with vitamin D because of my need for calcium for my osteopenia. I haven't asked for lab work on my vitamin D levels. Might not be a bad idea,

    Again, thanks for all the interest and good wishes. I hated to post when I have nothing concrete yet but I know I had mentioned the appt. and said I would respond.

    As far as how the injections work--I believe the treatment agrees with the latest research which has found different proteins in the spinal fluid of people with CFIDS/ME. Peptides are chains of building blocks which the body uses to make proteins. If the body has faulty sequenced peptides, it cannot produce the proper proteins. I know this is simplified but it's how I understand what the docs have said in their seminar. The injections kind of lead the body to utilize the properly sequenced peptides and once it learns to do this, it will start doing it on its own.

    I'm a little excited about starting but need to get some finances in place first and get my BP under control first. At least, for now, the Sjogren's symptoms have let up a bit. I'm not bouncing with energy but I'm not in bed most of the time either. I'm thankful for this blessing.

    Love, Mikie
  7. jkpta

    jkpta New Member

    Hi Mikie,

    I found you by doing a search for amino peptide injections on google. I am currently doing the injections through Dr. Dakos. I live out of state but he mails the peptides to me monthly and my husband gives me the injection.

    I have had 4 injections so far. A friend of mine is also doing the injections and she has had 5 injections to date. I have Rheumatoid Arthritis. My friend has Lupus, Sjogren's & Hashimoto's. I've had RA for almost 15 years. I've tried every alternative treatment I could find. I have not taken many prescription med's at all. The few I took were early on in my disease and then I went alternative. I only take motrin but I have noticeable damage. I also have problems with bloat/gas/pain probably due to the motrin. With the peptides I have been able to cut back on the Motrin and the stomach issues went away. When I increase the motrin, they come back.

    My friend & I have both been experiencing subtle relief. You have to avoid MSG in your food while going through the treatments. We were told to avoid it 3 days prior to the injections and 3 days after the injections. I know how unhealthy MSG is to our bodies but I am also realizing how much of our food contains MSG. There are so many other names for MSG so you have to be very careful. I found out the hard way because I totally blew my 4th injection. I consumed a large amount of MSG the day after my 4th injection and had a horrible relapse of RA symptoms. I was careless and ate something without even thinking about it. After the relapse I realized how much the peptides were actually helping me. I am now wondering if we had been strict with the MSG avoidance from the beginning, if we would be feeling even better at this time.

    I am now trying to avoid MSG at all times. I try to eat as natural as possible. My main goal is to avoid all canned and/or packaged food items. I'm only shopping at Whole Foods stores and reading labels like crazy. My next injection is May 8th. I'm hoping for great results with this next injection.

    You can reply back with any questions. I don't want my post to get too lengthy.

    Kelly

  8. Mikie

    Mikie Moderator

    Thank you so very much for your post. It is encouraging to know that the injections are helping you. It's also helpful to know about the MSG. I try to avoid it now because it can cause a flare or, at the very least, it can absolutely shatter my nervous system. It can cause disorientation, jumpiness, and aggitation. I don't eat a lot of processed food but eating out can be an issue. The worst case of MSG poisoning, yes posioning, was when I ate barbeque at a new restaurant. Yikes! I was so sick all day.

    Please keep posting about your progress. I'll keep you in my prayers.

    Love, Mikie
  9. jkpta

    jkpta New Member

    You are welcome and I will keep posting. Thank you for the prayers.

    I hope everything works out for you and you are also able to try the peptides. I feel like this is my last hope. I've done so much with alternative medicine and now with each new holistic doctor I try, they just keep repeating the same things I've already done.

    Sincerely,
    Kelly



  10. Mikie

    Mikie Moderator

    I hope this really helps you too. I feel as though this is my last hope as I don't want to take steroids. I was doing well until the Sjogren's.

    BTW, Dr. Gomeringer told me that you can feel the peptides almost immediately. The improvement may not last, especially in older patients who have been sick a longtime, unless the body can learn to integrate the proper peptide sequence into its own system. Did you notice a difference right away?

    Love, Mikie
  11. jkpta

    jkpta New Member

    Well, this is where I really wish Dr. Dakos would have stressed to us about the MSG. He said avoid it because it kills the base of the peptide. But...I feel that he should have gone into more detail about the avoidance of it. I had no idea how much MSG was in everything.

    After I got my first injection at his office, I left to catch my flight home. While at the airport I had some food because it was the first opportunity I had to eat. (You have to fast before the injections as well.) So, I'm sure the airport food I ate was loaded with MSG.

    I can't say I noticed major pain relief however, I was able to cut my Motrin dose in half and some days I could skip it altogether. I still had pain but I guess it wasn't as intense as usual. Also, which this makes me angry, his office girls didn't tell me anything about avoiding it 3 days prior to my visit. They only said to avoid all med's & supplements for 3 days prior. Who knows how much MSG was in my diet leading up to the day of my 1st injection. I can't help but wonder if I've really experienced the full benefit of an injection yet!

    I'm really looking forward to this next one. I should be getting it around May 8th. Oh and I am 45 yrs. old and I developed RA one month after the birth of my third child. I was 30 at that time.

    Dr. Dakos said he was 99% sure that I would be cured. He also mentioned, because I had not been on all the hard core RA med's, that I should respond well. I'm praying he is correct. I just don't know what to think at this time. This is why I went searching to see if I could find someone else getting these treatments. I am curious to hear the differences, if any, in what the Dr.'s are telling people especially about the MSG thing! I hope I haven't wasted my money. Because of the expense, the Dr.'s should be strongly stressing the MSG avoidance along with the other avoidances on the list. There were no others on the list that concered me thankfully.

    -k
  12. Mikie

    Mikie Moderator

    I don't blame you for being angry. These docs should have a handout giving details of what to do and what not to do before, and after, the injections. I pray that your next injection will be much more successful.

    Dr. Gomeringer also thought I had a good chance for success because all three of my illnesses are what he called "classic cases." He did mention my age and said it might take a bit longer, maybe a few more months on the injections. My CFIDS/ME was triggered 21 years ago, my FMS 11 years ago and my Sjogren's seems to have come on in the last two years or so. I had got to where I could live with the first two but the Sjogren's is kicking my rear end. I've never been so exhausted except in the initial FMS flare when I was bedridden.

    I will continue to pray for success for you despite the slow start with the injections. Let us know after you get the next one.

    Love, Mikie
  13. heapsreal

    heapsreal New Member

    Sounds encouraging, can u tell us whats in them or how they work, are they to calm down the immune system for auto immune illesses like srjogens or act like immune modulators. Also in your travelin looking into peptides, has there been much for increasing growth hormone etc, as this interests me as it can help with sleep and tissue repair etc
  14. Mikie

    Mikie Moderator

    I haven't spent much time looking at HGH. I have seen all the chemical notations for the peptides, which I totally don't understand, but I do kinda get how they work. Peptides are the building blocks for proteins in our bodies which are responsible for everything. Peptides are arranged in sequences, kinda like DNA. If DNA gets damaged, the genetic coding sequence can get messed up. Same thing with peptides. People with our illnesses have damaged peptide sequencing. When properly sequenced peptides are introduced, through the injections (pills don't work), the body should begin mimicing the proper peptide sequencing.

    Now, this explanation is overly simplistic and possibly not exactly scientific but I think it's a picture one can wrap one's mind around. Young bodies may only need a couple of injections because they are more plastic than older people's. Still, in all ages, there is better than 90 percent improvement, or even what appears to be cures. There are 35 years' worth of cases to back up these statistics in Europe, so I am pretty confident that I will, at least, see improvement, if not a cure.

    It is easier when a patient definitely can be diagnosed. Of course, for most of us, there are no defining tests for what ails us. Still, these docs have seen so many cases that they can pretty much diagnose from the exam and history. I've had CFIDS/ME for 21 years, FMS for 11 years, and very distinct symptoms of Sjorgen's for a couple of years. The doc found FMS deposits on my arm which was conclusive for him that I have FMS. The good news is that there is one injection which covers all three of my conditions. It may also work for my allergies and asthma. Hey, five birds with one stone. Such a deal!

    Love, Mikie
  15. Mikie

    Mikie Moderator

    I also hope the injections work. I did some research yesterday and found soooooo many foods which contain MSG. Before I start the injections, I'm going to go on a diet of nothing but organic fish, meat, veggies and fruit. I'm going to use up the food I have on hand during the first part of May before making the adjustment. Perhaps the diet alone will help me feel better. I want to give these injections the best possible chance. I doubt I will eat out from then on, the favorite social event of the Senior world here in FL. Of course, my so-called friends down here will feel totally entitled to roll their eyes and be rude about it. Oh well, it's just another indignity we suffer over what ails us.

    As I mentioned, I don't know much about HGH but it is touted as the "fountain of youth" by those who believe in it. They seems to have more energy and have lost weight. Our bodies make HGH when we sleep. Most of us don't get quality sleep so it wouldn't surprise me if we were all low in this hormone.

    Love, Mikie
  16. Mikie

    Mikie Moderator

    I cannot believe how much MSG is in everything, even most of the supplements I take. Some of the inactive ingredients are in the "suspicious" category where one doesn't know whether, or how much, free glutamate is present. Even the Guai I buy here has maltodextrose in it. My pharmaceutical fish oil I have to take for my Sjogren's dry eyes contains gelatin, a form of glutamate. I don't know what to do.

    I think I'll stop eating everything except organic fish, poultry, meat, veggies and fruit. I need to talk to Dr. Gomeringer about what I need to abstain from before, the day of, and after the injections. Do we have to cut all sources of MSG from our regimens all the time or just around the days of the injections? Even some of my cosmetic creams contain problem ingredients.

    I hope now that you know more about the MSG that you will get the full benefits from your own injections.

    Love, Mikie
  17. bobbycat

    bobbycat New Member

    due to my low salt diet I can relate it is difficult to find things to eat have to stick with fresh or frozen and organic
  18. Mikie

    Mikie Moderator

    Is to finish off all food or give it away so that I will be eating only fresh, organic things by the middle of May. I can't do much about the supps I have to take but I'll likely stop them before the injections and for a while following them. This is motivating me to eat more healthy food and I'll bet I'll feel better and lose some weight. Right now, I'm in a Sjogren's flare and have a mouth full of sores, dry mouth, and dry eyes. This causes more fatigue and pain. I don't know whether pain is a symptom of Sjogren's or whether Sjogren's flares cause FMS flares. With three immune/autoimmune conditions, who knows what causes which symptoms? It's an alphabet soup of symptoms all simmering in a pot of pain and fatigue.

    One neighbor has gone vegan and she lost weight and feels better. I don't know whether she'll be able to keep it up. Don't think I could be a vegan because I need protein moreso than other people.

    Love, Mikie
  19. Forebearance

    Forebearance Member

    Your future treatment sounds really interesting, Mikie.
    I wonder if the peptides you are going to take are related to Peptide T, the substance that is supposed to help with AIDS and etc. I would really like to try that, but I think it's still in the experimental stage.

    I hope it really helps you!
    Forebearance
  20. Mikie

    Mikie Moderator

    From what I've been able to glean, proper peptides are synthesized in the lab and put into a serum for injection. Evidently people with different illnesses have different peptide sequences which are not correct. Therefore, there are different peptide sera for different illnesses. They use letters to identify which serum one will receive. My greatest concern was whether there is one peptide sequence for all three of my conditions. There is one which covers what I have, and will likely help with some of my other conditions. There are injections for allergies and asthma, RA, Type I Diabetes, etc.

    New research is looking into peptides for autism, Alzheimers, Parkinson's and other neurological conditions. Apparently, things look promising.

    I want to get my diet under control and also my finances before I start in. The doc is out of the country in May so June would be the first available time to start. I'll let y'all know how it goes.

    Love, Mikie