Second Peptide Injection Today

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Dec 27, 2011.

  1. Mikie

    Mikie Moderator

    I just got it this morning so don't have anything to report yet. The doc was pleasantly surprised that the first shot continued to work the full two weeks. I had to stop at Target on the way home for an Rx. I shopped for a few other things as I have to wait an hour after the shots to eat anything. At one point, I felt some momentary nausea but it passed quickly.

    I'm resting today. It isn't required but I, instinctively, feel it may give the shots a better chance of working if I rest the first day. Also, I always have a raging headache as I've been off my meds for three days and will be off of them tomorrow too. I can take Excedrin and I have with an ice pack on my head. It's helping. I think the headaches are made worse by having to fast until 10:30 each time.

    Someone had asked whether the shots would help Lyme. The doc didn't think so as Lyme is a bacterial infection. He did say, however, that many with a dx of Lyme have something else and in that case, the shots may work. There is always the option of trying them or having plasma sent to Oxford in England to have it assayed. If there is a peptide sequence for whatever the plasma turns up, a serum can be tailor made for that. This is the direction that cancer research is going in, finding individual treatments for each patient which target only the cancerous cells. Peptide injections have been used successfully to treat cancer.

    I'll write more later when I can see results, if any. The doc warned me that each shot may cause a different reaction or no reaction at all. The full treatment takes nine months to a year and sometimes requires booster injections after that. So, it's not a sprint; it's a marathon. I've been in a 21-year marathon so what's another year.

    Thank you all for your interest and support. I wish this were available for everyone to try. It's the cost and availability of docs who are trained in the treatment which is the biggest obstacle for most. With a greater than 90 percent success rate in Europe, it seemed well worth trying this treatment to me. I'll keep y'all posted.

    Love, Mikie

  2. rockgor

    rockgor Well-Known Member

    Seems like things started off well. Hope the good results continue.

    Are you keeping a diary in case you want to write an article or give a
    speech sometime?

    Here's something I found on the net:

    There was a crisis at the zoo. A respiratory virus was being spread from one large animal to the other and unless medicine was dispensed quickly, there was the possibility that all of them would die.

    The problem was that nobody wanted to get into the cages to administer the dosage because they were afraid they would be mauled in the process. A meeting was called and someone came up with the idea that they could vaporize the medicine and send it through the air conditioning ducts. The animals could inhale the medication and nobody would be put in physical jeopardy.

    And it worked! The procedure was thereafter forever known as ... "Medical air for the cage-ed".

    (one of the caged)
  3. Mikie

    Mikie Moderator

    Thanks, as always, for your support. I really appreciate it. I didn't keep a journal for the first shot. I was totally unprepared for it to affect each symptom differently. I expected all my symptoms to improve and then for the effect of the injection to wear off. Well, that didn't happen. I gave the doc a crude x,y graph of how each symptom was affected. This week, I'm keeping a journal and assigning numeric values to each symptom so I can do a proper graph. It's really more for me than for the doc. He was interested in it and looked it over. He has seen so many diverse reactions to the shots, though, that nothing really surprises him.

    He was less interested in my short notes on Herxing a lot and the increase in pain. He's only slightly familiar with the Guai treatment so my inference that the increase in pain may have been like a Guai flare when my own body was able to remove the debris from my tender points. His partner, Dr. Dakos is more familiar with the Guai. I think at this point, he has seen such good results in so many that he isn't all that interested in the details. This is my first time at this so the details are important to me.

    I don't know that I'll ever write anything, except for sharing with our members here, but you are right--I do need to journal because I'll forget eventually even though my cognitive and memory are doing much better on the shots.

    Today, I feel pretty well but am tired. I slept wonderfully but we have Red Tide here which is killing fish that are washing ashore. It is windy and the wind can carry the Red Tide algae spores for miles inland. I live pretty close to the beach. I can't take my antihistamine until tomorrow. Fighting Red Tide allergic reactions always makes me tired.

    The pain in my soft tissues was gone last night like magic. My old tender points are not tender. The benefit to my arthritic wrists and fingers are back up where they were right after the first injection. The benefit had started to wane a bit last week. All in all, I'm very happy as the injections have now addressed all my symptoms. My Sjogren's was the worst and I'm so happy with the results. Also, I'm hoping once I can take my allergy med, my energy will bounce back up to where it was at the end of last week.

    The doc and I agreed that I should try a short exposure to the sun to see whether it makes me feel sick as it did before the injections. I won't do it til later in the week when I'm back on meds and not tired. I supplement with vitamin D to make up for not sunning. I'd love to get just a bit of color on my pasty Irish/German skin. I'm so white I glow in the dark! Can't get it on my face or chest, but I can put tan from a bottle on my chest. How I envy my Italian neighbors. My dermatologist is from Cuba and has beautiful skin. She complains that she can't go out in the sun or she will shrivel up and wrinkle like an old leather purse. Well, she doesn't need more color on her skin. It's lovely in its natural state. Mine, on the other hand, is gross! But, I digress...

    Thanks again. I'll write more as I have more to tell. I don't get my next injection until Jan. 24th. I just hope the effects of this shot last that long.

    Love, Mikie
  4. mbofov

    mbofov Active Member

    This is just more good news - I'm so happy to hear it!

    Was your plasma sent to England to have it assayed, and then a serum tailor made for you? Or are you being given what is standard for FM, Sjogren's etc.?

    I believe you said the injections are $300 a pop - were there more charges to have the serum made?

    Also, I think you mentioned earlier that this was helping your chronic fatigue syndrome. Did/do you have post-exertional malaise, the bone-deep exhaustion that hits about 24 hours after exertion and keeps you bedridden for a couple of days? Or was it more just generalized fatigue? The PEM limits my daily activity to about 3-1/2 hours of light activity, and then I have to rest, the rest of teh day (even I have more energy), to avoid crashing. I'm trying to determine if these injections would be worth a try for me, but I have a feeling we are dealing with different issues. I know I don't have FM or Sjogren's as you do.

    Anyways, this almost seems unbelievable, how well you're doing - I am really glad for you and look forward to your updates -

    Best wishes,

  5. Mikie

    Mikie Moderator

    Thank you too for your support and good wishes. It means the world to me.

    I didn't have to send my serum in because there is a peptide serum which is wide spectrum for immune and auto-immune illnesses. They try it first for the kinds of conditions we have. They only do the plasma assay if the shots don't work. I paid my usual PCP co-pay for the first visit to discuss the injections but now, I just fork over $300 bucks a shot. Not cheap but worth every penny for the benefits I'm getting. I don't know what they charge for the plasma assay but the shots all cost the same. A lab connected with Oxford University Research makes the sera.

    I have always had the post-exertional malaise with the CFIDS/ME but I learned how to rest when I needed it and how to conserve energy. If I overdid it, it would put me in bed for up to a week. It wasn't until the Sjogren's got so bad that I was useless most of the time. Last week, I had so much energy that I had to stop and rest a bit in between tasks because I'm not used to having energy and am still afraid I might overdo it. Regardless of what the doc says, I am not ready to assume a "normal" life. I think I want to give the shots the best chance to succeed before I take off in a frenzy of activity. I'll become more and more active but gradually. One of his male patients overdid it and became tired before his next injection. Heck, any little increase in energy is like a miracle to me.

    I haven't found much online about this treatment nor a list of docs who do it in the US. Last I heard, there were only about 25 docs here who are trained in the theory. Dr. Dakos and Dr. Gomeringer are both affiliated with Oxford and they travel all over to keep updated on the treatment and how it's being researched to address all kinds of illnesses, like Alzheimer's and autism. They are sooooo excited with the success being achieved and the success they see with their own patients.

    I figured I would spend the $900 for the first three injections. If, after three, there is no benefit, they are stopped. At that point, the patient decides whether to do the plasma assay. Usually, though, if they are going to work, there is some kind of improvement, even if it's short lived. That mine worked soooo well is very unusual in someone my age with four conditions and for someone who has been sick so long. 21 yrs. The interstitial cystitis was the fifth condition which appeared but it is going away too. I think had I not found this in time, I'd be back bedridden most of the time and who knows how many other illnesses would show up? If we are sick with one of these illnesses, others usually eventually show up.

    At first, I was almost afraid to say the shots might help me because I didn't want to jinx it. Well, the improvements were so dramatic that I knew they were going to work. I think as time goes on, it will get as good as it's gonna get and if this is as good as it's gonna get, I'll be happy. I haven't felt like this in decades. I think the challenge will be for my body to finally learn to produce healthy peptide sequences permanently. Some have to have boosters after the first year and that would be OK too.

    Well, I've written "War and Peace" here but I think there is great interest in any new treatment option and since this is all new to me, I am talking to myself as well as you. Again, thanks so much.

    Love, Mikie
  6. joanierav

    joanierav Member

    i am so happy to read all your updates. you are sort of a guinea pig for us all. and i am very very happy to hear how good the injections are going so far. believe me you are in my prayers , and have been from the get go. i am so excited for you.

    i dont know if i would ever be able to afford the injections, but if they heal you, it would be tempting for me to beg, borrow or steal to be able to get them. but like you said, there are so few docs that know this protocol, and im betting there wouldnt be any in new jersey.

    may god bless you on this journey.

    love, joanie
  7. mbofov

    mbofov Active Member

    for all the info. I did call your doctor's office today (you posted it earlier) and asked if there are any doctors in California who do this. They thought there was and are going to call me next week wtih the info.

    Am keeping my fingers crossed for you!

    Best wishes,

  8. Mikie

    Mikie Moderator

    Thank you all for your sweet support and kind prayers. Believe me, it means the world to me as I wander down the road less taken. I've always taken this road and it HAS made all the difference. I've been very blessed to achieve the healing which allowed me to finally work part time, until the Sjogren's showed up. Now, there is the possibility of permanent healing, or semi-permanent healing with some booster shots after the first year. I don't look at this as a cure but simply a correction in the body's ability to accurately assemble the building blocks of proteins needed for good health.

    Leah, I posted Dr. Gomeringer's info over on the Chit Chat board. I'm glad you found your way over here. I'm so sorry for how your CFIDS is affecting your life. You are right; this is the place to come for people who know what you are going through.

    Joanie, your support is so much appreciated. Back in the days of taking ABX, TF's and AV's and injecting heparin, I did feel like a Guinnea Pig. It worked at the time, though, and has become std. treatment protocol at the Fatigue Clinics. I was very fortunate to have local docs willing to indulge my requests based on my research. As I was getting sicker and sicker with the Sjogren's, I prayed to St. Jude as I was feeling things were becoming hopeless. I just happened to see Dr. Dakos' and Dr. Gomeringer's blurb in the newspaper for a free seminar on this treatment. I was looking for a new PCP and Dr. Gomeringer has a family practice and is in my ins. plan. I had been suffering from reactivation of whatever chronic viral infection I had so put off the shots for six months as I treated the virus with AV's. I am not religious so much as I'm spiritual but I believe if we do everything within our own limits and power to heal, keep faith, and ask for what we need, we might just be guided to the answers. I am feeling very, very blessed. I didn't feel I could really afford the shots but a small windfall came my way just in time and I'm cutting down on spending too.

    Mary, I'm so glad the office is trying to help you find a doc in Jersey. I think these 25 or so docs are pretty scattered around the country so there may be someone in your area. I hope and pray there is. I think as the success of these injections becomes more well known, more docs will get into the treatment. My own doc resisted it until his partner nagged him into it. The lab which works with Oxford University will not divulge how the sera are made. Big pharma here is trying to figure it out and are doing studies for RA and diabetes. If they ever are successful, the FDA will approve the treatments but will ins. co's. pay for it? The shots will likely cost an arm and a leg.

    As expensive as the injections are, my doc says he's barely breaking even on them. It's his passion now which is driving him. So, even at $300 a pop, this may be a bargain in the long run. I had to sign a paper that I would not try to find out how the sera are made. I also had to sign a paper that I understood that they may not be able to hold the cost at $300 for the full duration of my treatment. If there is an increase, it will be because costs have gone up, not because anyone is making a profit from the treatment. I owe a big debt of gratitude to my doc and the lab and Oxford University for doing things differently than here in this profit-obsessed country. I'm not against making profits but I do believe that effective healthcare should be available to everyone.

    Sorry! I'll get down off my soapbox now. I do understand that in the UK, PWC are being told it's all in their heads. I guess there is no place where our illnesses are given the proper priority and effective treatments offered. I do not know if the UK healthcare system pays for this treatment for other conditions. It would be interesting to know.

    Again, thank you all for your continued prayers and interest. I keep everyone in my prayers every day. The challenges presented by our illnesses can be overwhelming on physical, financial, and relationship levels. I've been bedridden and on Morphine most of the time in the past so I understand how bad it can get. I've had brain fog so great that I had to hang onto the wall to get from my bed to the bathroom. I mention this because I think it's important that we never ever give up. We may not be able to feel like we did before we got sick but if we try enough things and keep the faith, we just might be able to find some healing. I pray we all do.

    Love, Mikie
  9. Mikie

    Mikie Moderator

    I cannot tell whether the new injection is working or not as I'm having pretty severe reactions to the Red Tide bloom which is just offshore. I live pretty close to the beach and the spores are carried inland on the wind. Red Tide kills sealife and causes respiratory problems, neurological symptoms, and exhaustion in humans. I am suffering these symptoms presently.

    My mouth is a bit dry but it's not a SS flare. I'll just have to wait it out to see whether this shot is helping. My doc warned me that not all the injections necessarily provide the same level of benefits. It's a long-term treatment so I'm not discouraged even if I don't feel as well as I did with the first shot.

    Thanks to everyone and I'll keep y'all updated.

    Love, Mikie
  10. spacee

    spacee Member

    So glad you are a trail blazer for us! You must have said in your 1st post,
    but did you have to stop klonopin?

    I'm so glad you aren't bedridden. Really, really so very glad.

  11. Mikie

    Mikie Moderator

    You are soooo sweet! Thank you.

    I can take all my meds except for the two days prior, the day of, and the day after the injections. Doc said I can take my Klonopin except for the morning of the shot when I can't have anythin but water til an hour afterward. I don't take my Klonopin in the morning anyway so it's moot.

    I wish this darned Red Tide would dissipate, or move, so I can tell whether I got any benefit from the shot. The dry mouth isn't flare level so it might be a combo of the allergy med and my BP meds. RT always brings exhaustion and fog with it. So, until it decides to leave, I'll just have to make do. I wrote more over on the CC board.

    Thanks again for your kind good wishes. Praying for the best for you and yours.

    Love, Mikie
  12. spacee

    spacee Member

    I take my klonopin at nite too. That's good to know :)

  13. Mikie

    Mikie Moderator

    So many docs are afraid of the benzos. When I told this one that Klonopin has been a miracle drug for me, he agreed how beneficial it can be. That immediately elevated him in my eyes.

    Love, Mikie
  14. Mikie

    Mikie Moderator

    The Red Tide has hung on so it's really difficult to guage how the second shot is working. My arthritis is doing so well that I know the second shot worked as the benefit for my arthritis from the first one had started to wane just a bit before I got the second one. My pain has been good too. It's just the horrible exhaustion which is doing me in but that's normal with Red Tide exposure, along with feeling jittery being lightheaded, and having ringing in the ears.

    It's really cold down here. This morning, it is 38 degrees but with the wind chill, it feels like 30. We aren't used to temps like this. I'm hoping the cold will cause the Red Tide to dissipate. No one knows what causes it but it's likely that temperature plays a role. I've turned on the heat for the first time since I had the air handler replaced. It's working well. I'm sitting here wrapped in my nice fuzzy-wuzzy robe, drinking coffee. This cold will only last a few days and we'll be back into the 70's and low 80's. The doc told me to try sitting out in the sun to see whether it increases anti-immunity now that I've had two shots. If I can tolerate it, it will be another good sign.

    Thank you all so very much for your interest and support. I do have an e-mail address for Dr. Dakos if anyone is looking for a doc outside SW FL who does this treatment:

    Love, Mikie
  15. mbofov

    mbofov Active Member

    I did call Dr. Gomeringer (sp?) office and they told me there used to be a doctor in California who does this, but not any more.

    I think I will e-mail Dr. Dakos - maybe he has more info.

    That's really too bad you have to deal with the Red Tide right now! but am glad your arthritis and other pain are good.

    Take care -