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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Proof of Life...

I haven't wanted to write in here because I feel like I agitate people on PR. I had spoken of these awesome peptide shots and people were emailing me and I didn't know where to tell you to go. I still don't. I only know of one place, and that is where I live. I have had major improvements on these peptide shots. I don't feel among the dead anymore. I am not wishing for death. I have more energy. I am out and about everyday. I have been able to keep up with some work, at least for now. Bills are being paid, sleep is coming, no allergic reactions to food, going out with friends, laughing effortlessly, talking on the phone. All things I could not do a year ago. All due to these shots. I am on my 7th shot. You are supposed to be on them for a year.

I agitate some, I feel, because I don't know where to tell you to go to get them. Because I have no information on them, because you can't find info about them on the internet and I am sworn to secrecy. BUT, I have sent 3 people to my doctor and 2 will be going on them so far. I have done something positive, I hope. I have told you I was missing a peptide and it is being replaced. And it is being replaced. The only thing I can't eat in full, is lasagna. The cheese bothers me. It's too much cheese. I look a bright yellow for 2 days following eating it. I love lasagna. I can eat everything else. It's a miracle. Coming from a girl or woman who couldn't eat anything due to allergies that I had developed. Water was something I even started reacting to.

I still have major brain fog. That is my chief complaint. I have asked my doctor what can I do? I am on folapro along with the B-12 and minerals. He wants me to sit in a tub and soak in epsom salts and have the sauna on in my bathroom. Well, I can't. I live in a tiny apartment. I have 2 bedrooms, but there is no room for this small sauna in my stamp of a bathroom. He wants me to sweat the lead out that I have in my body. I also am full of arsenic. To take EDTA would not work with the shots I am getting so I can't do that.

I must admit; I am really not into doing anything right now more than what I am doing. I want to live my life and I have spent years trying to get better with expensive attempts that did not work. I don't feel like putting more effort, time, etc into anything other than this shot which lasts less than one minute. I LOVE THAT!! No pills, nothing to swallow and have a reaction too, etc. It's a blessing.

I still have CFS. It's always present but I am better at handling stress. Last week I broke my nose. A door slammed into me and broke my nose. I had blood coming out all over. I cleaned up and drove myself to the hospital and just dealt with it. If that happened 8 months ago, I would have had a nervous breakdown. I am sure of it. The night of having broke my nose, I watched tv and just went to sleep early. No crying hysterically, pain, but tolerable and I am recovering.

The biggest thing that is bugging me, aside from the brain fog and fatigue which is present, is the weight gain. Since I am now able to eat food without reactions, I am absorbing it. I am finally able to absorb food. Well, I have put on about 13 pounds. I can eat cheese now and ice cream and junk food. Before, I wouldn't let that stuff pass through my lips. I AM EATING. So, I have put on weight. I have been told I look healthier, which could be another form of telling me I am a butterball. I weigh 120 pds and I am 5 foot 3. Everyone tells me, "you can take the weight off if you go back to the way you were eating." They say this because I am upset by my chunkier frame, but I don't want to go back to eating that way anymore. I want to have a cheat here and there. I still eat salads and organic foods, but now I have organic ice cream!! The one thing about not being able to eat foods is, you eat all veggies and protein and never put weight on. I couldn't have any grains and now I can. I still stay away from wheat but I have cheese everyday and some form of a carb. I was not able to have potatoes, corn, rice, so that was a lot of carbs to avoid. Now that I can eat them, the pounds are coming back on. What do you do? Stay on a bland diet? That diet was awful. It sucked. That is the word...sucked. I don't want to live like that. I remember watching and being freaked out by every little thing that I put into my mouth. Not because of weight, but because it would make me sick. I would have a reaction. NO MORE...and THANK YOU GOD! WHOOA!!:victory:

And, I am going to start dating again. I have decided to put my foot in the water. I feel more alive. I am still lacking a sex drive, but I want a companion. I need to go out. I look forward to flirting and just living and having fun. Even if it goes nowhere, I don't care. I have no expectations. The good thing about feeling better, aside from everything, is you become happy with your life and you don't need or want all that you thought you did.

I hope everyone has a wonderful holiday season. Happy Holidays everyone and I wish better health to all of you. ALL OF YOU! I am very aware that at any minute, my health could go" bye bye" all over again. I am trying to live in the moment and live. JUST LIVE and sometimes that is away from a computer!

Comments

So glad that you are doing so much better......as far as the weight gain goes, two things

- one is that for your height, that weight probably does actually look good (I totally get that it might not feel that way to you, though),

-and two is that after your body gets used to eating this way, it may level off and you may possibly even lose a little (that often happens when the metabolism is messed up from not being able to eat for awhile....it takes some time to adjust but then the body realizes that it is actually getting what it needs and stops thinking it needs to slow the metabolism to prevent starvation)
 
Congrats! Yeah I wish we knew more about this peptide but please give us feedback on the 2 who went to your doc when they get treatments. Thanks!!
 
Tammie...yes I am hoping. I think one of the things is that once you can eat these foods, you really want them all the time. That is what happened in the beginning; it was like I was frightened I wouldn't be able to eat them again so I crammed them in. I have calmed down some, but I still have the weight. It's not easy, but I can deal with it if I am healthier. I would rather feel better than be a skinny rail like I was. I went from a size 0 to a 4...so it isn't that bad...just different. Over 10 years of being a 0 due to allergies and non absorption. I am hoping I will be able to exercise and then take it off. I feel better enough to walk, it's just the cold bothers me outdoors and I hate gyms. I am thinking of getting a wii.

Jen, both of these folks are on here so maybe they will say something when they start getting the shots..if they do. Like I have said in the past, lots of things have been tried by me with all the proof of working in the past, but they didn't work for me. I didn't have a lot of info on these but followed my gut instinct and now my gut...is better! : ) I will continue to report and check in. The one thing I was told repeatedly is that there would be no side effects and I would be able to go off of most supplements. I was assured. Well, he was right. NO side effects and I am only taking liquid minerals, vitamin D and magnesium topically. Now that.....is awesome!
 
Hi Spitfire- Glad you are feeling so much better.....from the sounds of your post, it seems like you must have suffered terribly from these food allergy/intolerances. Not being able to eat hardly anything would be awful. If I were you I would indulge also and eat all the foods that had been "forbidden" to me for years.
May I ask, are you allowed to share how you were diagnosed with having this missing peptide? Like, is there just some simple blood test a person can have to see if they have this problem? I know you can't share where you can obtain these shots, but was just wondering if the way you found out about this missing peptide was an simple blood test that others could ask their doctors for.
 
Hi Moon,
I can share where to go to if you PM me. I don't know if there is anything in your area and they want me to contact them (my doctors) to help out others with emails. The problem is, I have tried this and they don't get back to me and I start feeling like a secretary and I can't do that. I am not well enough to be a secretary or even a major advocate for others right now. I still have lows and I am working.

You have to have a blood test and it's sent to Germany or Spain for the results. It takes a couple of months for the results. When I found out I was missing the peptide, which most with CFS are...I was not surprised or even that hopeful. But, I remember thinking how my life had shrunken to nothing and not eating and I said screw it and gave it a shot....literally. After 2 months, I was eating ice cream and pizza. It was awesome. The energy has improved but I have such a long way to go.
 
Thanks for the good news Spitfire. I sure appreciate your frustration at not being able to share, and also appreciate any good news and smiles. It is just so heartwarming to see someone having a better life. You go girl.
 
Thank you! I want to share I just don't have enough info to share. I don't know where to tell people to go unless they live on the East Coast and near Philly. I have no idea where other docs are who are doing this. I can't find anything about it on the net. It stinks, but since it seems to be helping so many people, I don't think it will remain silent forever. They have these peptide shots for immune disorders. Lupus, MS, Cancer...they are from Europe. That is what I know. Hang tight everyone and I will continue to tell you all how it goes!
 
Great news, keep it coming! Is there anyway to find out the lab that does the test? It seems like I remember Dr. Mikovits taling about a peptide, not sure if it is the same thing. Who cares about a few extra pounds if you feel good!
Please keep us posted, this is exciting and I know you are!
 
Hi Marg, I don't know anything about the lab. Originally it was in Germany but now I hear something about Spain. It's not here in the USA and that is all I know.

I am excited. I still don't always feel good, but last night I was lying in bed and thinking just how sick I was a year ago. Sometimes when you are out of it, you don't remember how bad it was. I used to HAVE to bathe 2 to 3 times a day due to feeling itchy or pain from fibro. Now I take a shower once. I was obsessed with warming up and being clean. That nervousness went away. I cried everyday too. I was always on the verge of utter despair. Not anymore. I feel excited for the holidays and for Christmas. I have excitement again.

So, you see it's not just foods that it treats or food allergies but the whole immune dysfunction. I will for sure keep you posted!
 
I am really surprised about Spain. We lived there 4 years when my husband was in the military. They must have come a long ways if they are doing so many things latey. I did some checking and asked one friend that is a great researcher and the peptide that Dr. Mikovitz talked about that they used in AIDS must not be the same one. He said there is not much of it anyway but Dr. Mikovitz was talking about trials. Please keep us up to speed anyhting that helps a fellow traveler may help another.

Did you ever test for XMRV? I have not, Dr. Klimas thinks too soon and nothing to do really anyway. She did put me on Imunovir and that has helped. She also spoke of Cocksackie and the Dr. Chia Oxymatrine but said she does not believe in layering. No one ever looked at my immune system like she did and I went to many doctor in the 90's. I totally agree about the immune system

I really thought I beat it but slowly I knew it was coming back and then one morning I could not get out of bed.

I have been going to write about my two visits to her but deleted it once and still cannot write it the way I want to. I imagine feeling fluish from the Imunovir is not helping but I remind myself that means it is working.

I wonder why labs in the US are not doing some of these this. The test for the methylation block had to be sent to The Netherlands.



Keep on keeping on, you will get there!!!
 

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Misfit Toy
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