Thank you all for your support while I was in hospital I have been home...

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  • Today is a tiny bit better with ability to sit up some. BP is quite high if I am upright and low/normal when laying flat. Still CSFL pains and weirdness. Waiting to see better neuro. But I am totally focused on Deborah's protocol and never miss a day. I am still wondering if I should try upping my aloe from 20z a day plus one mitake cap, while I am trying to heal dural tears. What do you all think?

  • How long have you been on the 2 oz plus the maitake? If it's been more than 2 or 3 weeks I'd be tempted to try increasing. Jan Groh just posted about how upping her aloe appears to be helping.

  • I will go look at her post, thanks! I have been taking the 20z aloe and one maitake for 4 months. So I guess I would be safe to add maybe half an ounce to start in afternoon. Fingers crossed!

  • Today lots of neck, upper back and upper sides ofchest pressure. Awful feeling. Tinniis very loud. Head pounding and pressure. Low mid back pain quite strong. Began upping my aloe today. I am very focused on this protocol and hoping for more good results. I am almost to 7 months. Myhusband has built a thingy so I can lay flat and use the computer a little. Yay! Thank you all for your support, it makes such a difference in my day!

  • Love yoru "thingy", I've often wished for one of those... ! Do follow up on your suspicion of CSF leak.

  • Nice computer thingy! Good job hubby!

  • I am waiting for a referral to a new neuro, so far the appointments are 2 months out.

  • Xxxxxxx Yzzzzzz I am actually hoping that by the time I get one of these long awaited neuro apointments, this protocol (and maybe the copper) will have helped enough to make me not as desperate to see the neuro. One can hope!

  • That would totally rock indeed, ironically. We can only hope and keep our toes crossed. But meanwhile, glad you've got the appt set just in case you need something more like a blood patch.

  • Good luck!

  • I am sorry you are feeling so sick. I don't know if it's s good idea right now, but my allergies and my son's disappeared taking Alpha Lipoic acid + Biotin. The thought after is that ALA cleans and improves liver function. In Peru, where I am from, the allergies get treated first, treating the liver for any kind of weakness in it, with ALA. Biotin is needed if the daily dosis of ALP exceeds 100 mgs.

  • I hope you feel better soon

  • Xxxxxxx Yzzzzzz, thank you for your advice. I will check out ALA and biotin.

  • Thank you all for your continued support! I am still laying down or reclining no more than 30% all day, except for trips to the bathroom and a little walking around to get the blood moving. It has been 8 weeks now. I am much better than those first 5 weeks. But still have definite signs of CSFL. I am waiting to go to Duke. I am also still on the protocol and have hopes that it is helping me heal the dura as well. I have also begun the copper and start a detox clay bath today to help. I am so glad to be on the protocol! It gives me hope I may heal on my own eventually.

  • Thank you Carrie Lumley!

  • Love your home office set up. Lets hope your share values are rising, so that you can afford neuros!

  • So relieved your distressing symptoms are decreasing. Let us hope your clay bath is a refreshing and soothing.

    Gentle hugs.

  • Xxxxxxx Yzzzzzz. Just the thought of lying on my back brings me out in goosebumps. I do hope you are fairly comfortable?!

  • Xxxxxxx Yzzzzzz clay baths are wonderful. Thank you!

  • The past two days I have been able to be upright a lot more than usual. So I am hoping that somehow I am healing whatever it is that has had me down for 2 months. I just got a referral to Dr. Linda Gray at Duke to see about finding the dural tears. But if I continue to feel better, I am going to postpone. The neuro is on board with that. Yay! The tinnitis is still very loud, and the bursting headache upon standing up is still there but not every single time I rise. My head feels muffled along with one ear. So weird! Last week my BP was spiking when I stood up to 1990/110. Very uncomfortable along with high pulse rate. This week though it is lessening. I had upped my kefier and aloe some. I also began slowly to take the copper last week. All of it seems to be helping. Thank you all again for your very kind support!

  • It's so good to hear that you're improving! Hugs and continued prayers!

  • Yes, so glad to hear this! May the healing trend continue.

  • Thank you! My progress remains except for the horrible tinnitus.Head pain is getting better. BP and pulse better on standing. Thank you again for your cherry support!

  • You dno't have to get full ana to have MCAS. It really falls on a spectrume of experience, and since you're on the full protocol, you're less likely to have full ana thankfully, as both the L. Rhamnosus probiotic and other aspects all help tamp that down. So you'll have all the what I call "subclincial" MCAS signs of Stage I ana (skin signs, mucuous, some GI discomfort - you start emitting things in Stage II, but asthma still responds to inhalers at that point - you're hittin stage III if it doesn't and should be ready to resopnd with emergency measures/epi IMHO but I'm not a doctor, just well studied as a support group leader. ) Anyway, I think ou're on the right track, and I'd still look into finding any dural tears/leaks while continuing the protocol as tolerated to help heal otehrs/prevent more. Don't know if this post will help clarify anything for you> Good luck! hang in there! http://ohtwist.com/what-is-mcad/when-to-suspect-mc ad/

  • Thank you Jan Groh, I read your article (and a few others) and learned a number of things.Thank you! I need to pay more attention to mcas. I do know many things that I can not eat or be around. It began when I was a teen. I gave up all soap. Then all perfumes soon after. I seem to have times when I am more reactive and sometimes I can get away with stuff (not any more...boo hoo!). I have been wondering how much of my CSFL symptoms are true or are mcas? I am doing better in getting vertical. But the tinnitus is very loud and poundy. I see tinnitus is on your list. And the hot/cold flushing. I like how you differentiate between the different levels of reactions. That really helps me. I have been stage 1 and 2 many many times. I am having lots of intense stomach pain, strong burning. Like heartburn. This comes and goes, with eating foods I shouldn't, bending over, and stress. Wondering if it as mast cells there acting up, and how to calm them down. I am only eating lamb, chicken and cauliflower for the last few days. Sorry for rambling! Thank you for your kind support!

  • Happy to help. NB that hormones can drive MCAS too in us women- both estrogen and progesterone have turned out to be MC triggers for our lose ! :( And they can really vary as you know, lending to the variability in your symptoms, or "waxing and waning" as Afrin calls it. Stress is a big driver too, and having a CSF leak could be very stressful. Hang in there and do a food and mood journal if can. Yes, crazy makng. Good luck!

  • up your DE, the improvements at 1/2 tsp is squat compared to at 1+ tblsp.

  • Xxxxxxx Yzzzzzz thanks! Now I am past meno I don't really think about my hormones. But I guess I could be still having issues with them. I have tried the journalling for food and mood before. I don't notice the mood so much, but now I am thinking brain fog would fall under that "mood" correct?

  • Brain fog is a defo result of MCAD of all kinds, is all I will say. It affects my mood as it drives me nuts, making me grumpy. But not the same as the mood swing I get at the start of a reaction no. Not sure what our hormones do post meno, though I do think they can still fluctuate a bit as a friend of mine just found. (Her periods re-started recently after 1.5 years off at 53.) In any case, there's so many driveres/factors, it's often hard to sort them out. And having a CSF leak not doubt does not help/adds stress IMHO.

  • Xxxxxxx Yzzzzzz I think you are right about the stress of a leak adding to the mix. I am 7 years past meno. So I think I am pretty stable. Have you found this protocl to help your MCAS? Forgive me if you have already said and I forgot.

  • No worries, you're juggling a lot right now. I feel it has helped mildly yes, along with trigger ID/avoidance, and increased quercetin and anti-histamines. I'm pretty stable as long as I mind my p's and q's and avoid gluten and dairy - and stress. :) My biggest improvement is more stable energy, and peeing a lot less once I started the PQQ plus the aloe.

  • Xxxxxxx Yzzzzzz I am glad it is helping you some. How long have you been on the protocol? You may still have more positive effects yet. I have a much better bladder now after 5 months on PQQ. I have tighter fingers and teeth now, as well as a cyst that has shrunk down to a more comfortable size.

  • Oh I'm defo stronger, and it's been about 9 months or more. And that's on top of the 6000/day Vit c plus 1000 magnesium and calc and zinc plus special low inflam diet. I'm this > < close to ditching my last crutch or at least turning it into a cane, if I can just get a wee more core strength. (I'm doing yoga now to that end. I'm great onlevel ground, just stuck on hills and stairs yet but improving.) It's defo helping me, just not as dramatically as for somew ho are just starting out. I love the PQQ. I call it "Pee Quality Qontrol" lol

  • Xxxxxxx Yzzzzzz I am so very glad to hear how much you have improved. Yay! I hope the yoga helps your core, tai chi is very very good for strengthening the core. I would like to get back to that. What form of magnesium do you use? I think PQQ is amazing as well! lol. I can sleep 6 hours now without going to the bathroom! Do you still take the antihistimines?

  • Thanks! Me too. Yes, still on anti-histamines which defo help keep reactions down to a dull roar/milder/less. I take 2 types of mag: citrate, and oxide. I know, we should take better quality, but I'm poor, and tolerating both so I'm fine with those. Plus epsom salt baths sometimes. I take 500 a.m. and 500 pm mag. (The pm is included in a combo calc/mag/zinc tablet from Trader Joe's. Again, I'm lucky to tolerate the cheap stuff.)

  • Xxxxxxx Yzzzzzz for the details. I think I am only at 200mg mag cit. I did try other forms (expensive ones) and could not tolerate them. So I am sticking with citrate. That is wonderful you tolerate your supps from trader joe's! That must be a savings. Do you have tinnitus? I am wondering if I begin H1 and H2 blockers I might be abel to lower the noise. I have not done the antihistamines yet. Do people with MCAD type issues need to watch out for filllers and such in these type pills? Or any over the counter H1 and H2? Thanks!

  • I no longer have tinninitus, between my neck healing and re-aligning, and calming my mast cells, yes. And yes, you can react to anything in any supp (including H1 and H2 blockers) with MCAD, so always go low and slow until you know. I'm lucky to not react to corn, so I get away with/tolerate more than most. Good luck.

  • Xxxxxxx Yzzzzzz that is wonderful that you no longer have tinnitus! I can not even imagine that. I am very happy for you and all your good healing. I will go low and slow, thank you