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Posted 9/12/2016 2:32 PM (GMT 0)
Hi everyone! Oh my goodness, I have been meaning to check back in here to say hello and see how everyone is doing for AGES now! I'm so sorry to have abandoned you for so long. Everyone was so helpful to me when I was first diagnosed with Lyme, back in 2013, and subsequently as I went into treatment, and I will always be so grateful for all your help and support xxx Truth is that in the Spring of last year, I finally felt well enough and confident enough to join Facebook - something I really didn't feel up to before, due to my general depression, misery, hopelessness, fatigue . . . you all know the feeling :o( . Anyway, when I joined Facebook, I found a great support group based here in the UK, and it was just SO great to be able to "talk" to people over here, and even to find a couple of people in my area who I've been able to meet up with! One of them has become pretty much my best friend now (having been abandoned by all the pre-illness people who I THOUGHT were my friends but who slowly disappeared :o( ) so joining Facebook has been great for me.

Of course, finding all this support so much more locally meant that I became more involved with that group, and consequently less involved with this one, although I did think of you often, and still do. So, I thought it was time to check in and see how you all are - traveler, girlie, cd3764, lymie girl, sarahm620, rowingmom, revive, lovemychildren Mom, celeste15, happyjo, to name just a very few . . . so many lovely and helpful people :-) How's everything with you all?

Just to update you on my own situation . . . I am still struggling generally, still have this stupid dizzy, woozy, foggy head - but my fatigue and mood are much improved, so that's been a great relief. I have been on Cowden Protocol since August last year (i think that was the last time I posted, as I had had a bad reaction to the detox herbs, and had to ease off them as I was really sick (vomitting sick) after three days on them - think I must have had a heavy toxic load, which my body couldn't cope with when the detox herbs started doing their work!). So, because I had to stop and start a couple of times, plus I introduced some of the herbs quite slowly, it took me nearly 13 months to complete the 9 month protocol, and I finally finished it yesterday - yay! :o)

However, I'm really not sure what to do next, so I have decided to do another three months of Cowden, just until I can work out what to do next. Does this sound reasonable? I did around 18 months of abx (from late 2013 to mid 2015) and then Cowden from mid 2015 to now, so I really thought that everything would be well and truly killed by now, but I still seem to have this dizziness, can't cope well with stress or upset, foggy head . . . would really like to improve those so I guess I still have to keep going :-/.

Anyway, like I say, the real purpose of this post is just to check in and say "hi" and I hope you are all making progress and doing well?

So lovely to be in touch with you all again :-) - sorry it's been so long!! Sending lots of love

xxxx
Posted 9/12/2016 2:37 PM (GMT 0)
Flossie!!! Well, darn! I had hoped that since we hadn't heard from you that you felt so much better you were just off living a good life!!

But I am thrilled to know you have had some improvements!!! And I'm also really happy you have found the more local connections so helpful!! It's amazing when you can really connect with people and they are able to be a part of your support system. :-) Although I do have to say we did miss you.

What symptoms are you still dealing with? Maybe we can give you some ideas of what's next?
Posted 9/12/2016 2:47 PM (GMT 0)
Awwww, what a lovely welcome back Traveler! I REALLY wish I'd stayed in touch more now :o( - this really is a lovely group xx Sadly no, I'm not miraculously recovered, but am making slooooowww progress I think. To be honest, I don't seem to have made huge progress on the Cowden Protocol, BUT at least I don't seem to have gone backwards, so I feel that it has at least kept me stable! If you remember, when they took me off abx about 18 months ago, I suffered with stiff neck, headaches, tearfulness etc within a couple of weeks (I posted on here about it for advice, I seem to remember) . . . so they put me back on abx, which seemed to put me back on track. But then I started Cowden in August last year - as I say, it seems to have kept me stable at least. However, I have now lost my LMD, so I am on my own as far as I can see :o( . . . I just thought I'd keep going with the Cowden for a few more months, while I formulate a new plan! My symptoms now are still a slightly dizzy head, bit fuzzy and woozy . . . still a bit brain foggy, and cant cope with any stressy situations or upset/confrontations . . . I'm slightly unbalanced too, especially if I'm trying to squeeze through somewhere - have a tendency to bump into people! - and can lose my balance easily. To see me from the outside, you probably wouldn't think there was anything wrong with me but, like so many of us, it's still all going on on the inside :o(. So yes, those are the remaining issues to address - nothing has really hit my woozy head, and I do wonder if it's residual nerve damage that I will never get rid of and just have to live with :o(

How are you anyway traveler? I do hope you're making good progress?

I've missed you!! xxxxxxxx
Posted 9/12/2016 2:57 PM (GMT 0)
We've missed you too!! (((hugs!))) And we are just happy that you thought of us and decided to check back in!!!

What about switching it up with Buhner's protocol? Just a thought.

When was the last time you had your adrenals tested with a 3 or 4 collection time of saliva? You've been at this a while and it's hard on the adrenals and thyroid, which can throw off our healing as well.

As for healing the nerves, have you heard about Lion's mane? It's a mushroom (really cool looking too!!LOL!) that helps repair the myelin sheath that gets damaged with Lyme:
www.ncbi.nlm.nih.gov/pubmed/12675022

www.livestrong.com/article/509385-lions-mane-mushroom-for-nerve-damage/


Me? Well, it's been quite the ride! LOL! turn I'm still not healed again, but I think you were still coming here regularly when I discovered I had my adrenals crash, taking my thyroid with it, and then managed to get reinfected??? Anyway, I'm back to fighting the good fight and sticking it out with my favorite group of people, right here on this forum!! smilewinkgrin
Posted 9/12/2016 3:53 PM (GMT 0)
Welcome back, Flossie! Thanks for coming back to say 'hi'.


Good to hear you've found some support locally...

I was thinking the same as Traveler - have you thought about trying Buhner's? Maybe switching it up is what you need.



I hope you stick around here for a little while anyway...

:-)
Posted 9/12/2016 4:32 PM (GMT 0)
Welcome back Flossie - I wasn't around at that time - but wanted to say welcome back to the forum. For my body, when I came to an impasse, I went back to research (here and the internet and my Buhner books) to see what else I might need to consider and would mix up the approach. Out of curiosity, what are you eating nutritionally? What co-infections have you addressed?
Posted 9/12/2016 8:21 PM (GMT 0)
It's great to catch up with you, Flossie! If that other group you mention is LDUK, we may well have bumped into each other over there. x
Posted 9/13/2016 2:55 PM (GMT 0)
Hi everyone - lovely to be back with you! (although obviously I'd prefer it if none of us needed to be here in the first place! ;o) ).

I did try Buhner-type protocol for a couple of months Traveler - I think it was after I'd been on abx for just over a year, and before I tried Mino & Rif . . . I felt I didn't make any progress on the Buhner herbs, although again, I didn't go backwards I guess :-/ I also think I've tried the lion's mane thing - it had another name, and I'm thinking either something like coriolus or something like hericium . . . I remember I had it as a supplement some time ago, and looked it up and there were pictures of this weird looking lion's mane mushroom :)

Adrenals have never been tested, though I think they probably should have been :/ I suffer (less so now, but a LOT in the beginning) with what I can only describe as a kind of exaggerated startle reflex . . . my stomach would flip and my heart would pound if anything vaguely unexpected happened - car journeys were difficult as I would get this huge panicky feeling if ANYTHING untoward happened - unexpected queue of traffic, car coming the other way, bird in the road - things that clearly weren't going to cause an accident, but needed slight avoidance action . . . my body would have a huge overreaction . . . hard to describe, but anyway, I felt that could have been an adrenal thing? Never had it mentioned though! So no, hasn't been tested. Maybe I should investigage that :/

Thanks for the welcome back Questing - yes, I think I may need to hit the research again! I try to eat healthily, eating lots of the good stuff and cutting out the bad stuff, but I haven't done a strict diet . . . I did go gluten-free for a while, but didn't notice any difference at all, and then my LLMD said not to bother, so I gleefully went back onto the bread! ;o)

Great to hear from you again Happyjo and Celeste, and glad you're doing well Happyjo! :) We'll get there in the end! :o) And yes Celeste, I'm sure we may well have bumped into each other over on LDUK ;o)

Lots of love to everyone xxxx
Posted 9/13/2016 3:25 PM (GMT 0)
It's likely that you saw the name "Hericium erinaceus" for Lion's mane. I'm really sorry that it didn't help any! I'm also sorry that Buhner's didn't seem to do much for you - other than keep you from sliding backwards.

I'm sure that there is a therapy out there that will help you though! So keep on looking, and see what others are using that have healed/made good progress and see what you can come up with. We may be of some help as you come across different therapies. You know we are open to discussing anything that's safe to use on here!
Posted 9/15/2016 5:21 AM (GMT 0)
Hi Flossie! Thanks for letting us know how you're doing. It is always a pleasure interacting with you on the forum. I hope you find the right combo of meds to fully heal.

I get that jumpy type reaction here and there. I think it might be adrenals or, possibly, too many toxins floating around.

I'm working on Bart - slowly, but surely! Also, working on a fungal colony in my sinuses. Then, I will go after Babesia.

I hope you decide to stick around. It is so nice having a familiar "face" around. :)
Posted 9/15/2016 6:10 AM (GMT 0)
Some my dizzyness is low bp and high salt diet and chewing on licorice seems to help ...is a adolsterone ,hpa axis dysfunction ..maybe georgia hunter can elaborate ...welcome back
Posted 9/15/2016 12:27 PM (GMT 0)
Hi Lymie Girl - so good to hear from you again, and thanks for the lovely welcome back :-) xx Glad to hear you're making progress, and hope we can both kick this thing into touch before too long! ;-)

And thanks too bluelyme - dizziness is horrid, would just love to get a nice, clear head back :-/

Sending love xxxx
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