Sorry for all the posts recently I m gonna figure this out I promise Talk to...

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  • Oh my! Did you start all of these at once? You should always go slow and low. One supplement at a time, lower dose than called for and wait at least a week before introducing the next one.

  • It actually took me several weeks before adding the next supplement because I start at a low dose and increase weekly until I reach the protocol recommendation. So I have really been adding one per month.

  • I started with regular doses but waited any where from2-4 weeks or longer in between. I had to push through die off and healing for the probiotic ,maitake and de. They were the worse for me. Proper copper isn't a picnic either. But the end result is worth going through for.

  • I would slow down as others said above. Also sounds like it might be a cold or flu coming in independently of supplements. I am allergic to some mushrooms, so lions mane is something I am holding off on.

  • Amber, that is exactly what has happened to me with the DE. My kidney areas hurt really badly, too, and my digestive tract was really tore up. Tbh, I can't be 100% sure about the digestive tract being caused by the DE as that didn't get super bad until I ate some potato chips.

  • Yes that's exactly it its like in my lower back. I thought it might be ovarian pain but kidneys are right there too. Plus my joints feel sore and wobbly like when I was 9 months pregnant and everything was all stretched out. I feel like I have the flu but no fever or sinus issues at all nothing except joint pain, dizziness and back and neck pain

  • I feel like that ALL the time. When I took Ivabradine for PoTS for 3 weeks, lots of painful symptoms diminished. Had to break from them for a month for tests, so yet again again feel beyond wretched. Thus, is one of the supplements increasing your PoTS symptoms by dehydrating you, lowering your blood pressure, or increasing your adrenaline? My family and I can't wait until I begin Ivabradine again next week. Gentle hugs.

  • Start slowly....I started slowly, Culturelle for a week or two. Then added Maitake instead of Aloe, I read the aloe can increase bruising. I take the Culturelle and Maitake daily without missing.

    After a month or 6 weeks, I tried PQQ 20 mg but felt like the dose was too high, stomach issues. I can take the Life Ext. version, it has 10 mg, plus some other supplements for mitochondrial repair.

    I stopped Lion's Mane shortly after I started it. I felt strange, wiped at. May try it again at bedtime.

  • This is a super helpful thread for me right now. I've been on aloe only (from the protocol) for a few weeks. I started at less than and 8th of the recommendation because I can't afford not to function (single mom, FT job) and I'm at about half now. I'm starting culturelle next, but I may do the kid one I started my son on and wait until I have a couple days off. Not sure what after that.

  • Epsom salt detox bathes are important. Detox bathes means no soap and rinse after you soak. These pull waste from places in our bodies and also offer magnesium support. With mutated Ehlers Danlos tissue we do not exchange as easily as norm ppl.

    That is the reason all supplements should be started with minimum amounts. Our tissue is mutated. Also if your body response is to lower dose then that saves product. This is a lifetime commitment.

  • I like to suggest getting the probiotic on board for the security of treating histamine, creating healthy gut flora and giving proper digestion. We are consuming these supplements that are breaking down in our intestines.

  • Sonja, how often should you do a detox bath?

  • I can't tolerate soaking In the tub because I can't regulate my body temperature. Are foot soaks a close alternative

  • Personally I think DE is one of the most versatile adds and really helps with distribution through out the body. It's ion charged and removes bad items, waste and bacteria.

    But what it gives in skeleton support is pretty amazing! Plus it's inexpensive and fun :)

  • One of the most important parts of this protocol is truly understanding each supplement, where it is derived and what it targets for our mutated tissue.

    If you are in a brain fog give yourself time does lift.

  • Thanks Sonja I've been putting off taking the DE because I have fears of side effects

  • Xxxxxxx YzzzzzzMullen go slow start with a 1/4 or less

  • Thanks Susan I'll start slow :)

  • Xxxxxxx YzzzzzzMullen instaryed with a teaspoon. Way to much. I did that at the same time I bought a new gel mattress. Thought the mattress was killing me. Had no idea it was the de until all of a sudden I was better. Phew! Was worth going through the detox for a month....I think however I have not increased from there. Now I am starting proper copper. Another fun detox curve. One day this will all be behind me and I will feel great all of the time. I feel like my new hobby has become detoxin and healing something. For the last 18 months. Every time i feel great I take on another supplement LOL

  • I've done bathes twice a day in the past eleven months or once a week. Learning to "listen" to your body is truly the most important part of this protocol. Our healing takes on a voice. It requires patience and utter care.

    Clean water is very important. I'm drinking as much Figi as I can afford. Or Gerber baby. I've recently noticed how yuck my tap water truly is.

  • I'm on the probiotics and aloe. I bought the L-arginine and the PQQ but haven't opened either one of them

  • Xxxxxxx YzzzzzzMullen personally I went to the pqq next.

  • I think my biggest fear is having a reaction to something. I live by myself and worry that something will happen. Ever since I became allergic to peanuts this year, the fear is in me

  • Xxxxxxx YzzzzzzMullen i can understand that.

  • DE is really a very forgiving consumption. No reason to be scared. Each person is different yes but I'll sing it's praises.

    You can sprinkle a tiny amount on anything eats or drinks. My body actually used it better through food.

    As I built tolerance and straight up warm water it kick my bootie but added skeleton health.

    I've pushed it around in my schedule. I've stopped it entirely....but my pain goes way up. With DE my.body pain is practically null.

  • I understand not regulated body temp. Been there!

    I've scalded myself because of being numb.

    Foot soaks help. Body is good. It really does change as the healing happens. PQQ is a nerve growth factor. It will aide in the ability to get back in the tub :)

  • Sonja I can feel the heat, I just can't tolerate it. I don't sweat anymore for some reason. I passed out 3 times this summer just walking to my vehicle

  • As you begin to heal with the protocol hopefully sweating will resume. I've been there too. Most of my life I've never perspired....I've maybe twice had facial sweat lol. I'm 48 boob sweat maybe.

    I've started using apple cider vinegar as anti persperant. Works great, apply with cotton ball.

    One thing that will make me get hotter is coating myself in coconut oil. That gets my body temp up.

    If I get faint.... I go to the kitchen, get a spoon of organic honey put in my mouth as that melts I lick pink salt off my palm. Then be seated.

    With your new adds open capsule and use the smallest sprinkles. One capsule can last seven days. It's that important to understand it's target.

    I mix pretty much everything in yogurt and my kefir in kiddie plastic cup with plastic spoons. Keep tampered capsule in separate plastic holder.

    If you understand the target growths you'll feel them.


  • I think this must be what's going on. The weird thing is I've never ever had bad pots symptoms and actually didn't think I had it. Now I'm thinking of going back to the dr to let them check my heart. This does explain the floaters I've been seeing since I was pregnant last year though I guess

  • Thanks Sonja I just feel like I am falling apart and that I won't be getting any better. It seems everyday something else pops up that is wrong. The depression is starting to get really bad. It takes all I have to get out of bed for work. About a month ago, the smell sensitivity hit me and now I worry about what smells I'll encounter throughout the day. Yesterday I went to a health food store and something got me and I had to go to my car and turn the air conditioning on. I hope this protocol can reverse all of this because the doctors can't figure me out

  • Amber - I sat up and took notice at your remark about floaters! Please explain the connection between floaters (in your eyes, right?) and EDS symptoms? You mentioned POTS and your heart in the same thought as floaters - what do you mean? I have many floaters in my eyes - and am just starting to learn about EDS ....

  • Xxxxxxx YzzzzzzIntire I'm sorry to hear you're feeling so bad. I was the same way and very upset that the protocol that works so well for so many people just didn't work for me. I started off with Georges Aloe with a teaspoon and a culturelle a day. By 5 weeks in my body felt horrible, my joints ached, I was subuluxating in place I never had before and the overall pain was unbearable. I took epsom baths daily and did everything else suggested to east the "healing crisis" I gave it another 4 weeks but then gave up. If after 9 weeks if I still felt that bad I figured it wasn't going to get better. It took another 4 weeks to start feeling better after stopping but eventually I got back to my "normal" body pain.

  • Thank you so much for sharing. I'm ok with pushing through if there's better healing at the end but I think honestly I'm like you I think I'm having some sort of reaction to one or a couple of the things I was taking. I've stopped them completely just to try to get back to normal and then I might try to start over very slowly but i don't want to feel this sick ever again! Lol

  • Warrior On!

    Gentle ((Huggs))

    I totally get it....a friend is temporary living in my space.....I'm allergic to folgers...what vanilla coffee does she choose to brew in my pot????? I am still provoked by her choice


    Push Push On!

  • Kristen

    you did not mention if DE was being consumed.

  • I read somewhere that pH levels need to be restored first before any other supplementation can take place if one's body is too acidic and the best way for that is with calcium. That is what they use in agriculture. I read in a few places that DE contains silica (that is a precursor to calcium) and calcium (amongst other minerals). Can anyone confirm this for me? I took it and every place that I have ever had an issue in my life got worse, two places in my back, my elbows, my left knee, my feet, my toes, etc. I stopped it and am still feeling the effects. Btw, if one has low SOD (superoxide dismutase), they may not be able to handle the oxygen being produced by a detox. If I really, really need it and it will eventually get better then I will soldier on slowly and carefully. But I have no way of knowing if I am making myself better or making myself worse.

  • I think seeing floaters is common for EDS. Your eye is made of collagen and it can be affected if you have EDS. I've seen floaters mentioned as a symptom in people with PoTS too. PoTS is postural orthostatic tachycardia syndrome and it goes hand in hand with EDS and mast cell issues for a lot of people. Here's an easy read article and the link to the study is in it: n-links-three-mysterious-debilitating-diseases.

  • Thank you, Amber!