feeling alone

Absolutely NO need to apologize, Silly Sheep!!! I was wondering where you had gotten off to!! I'm so, so very sorry that you have been struggling so badly - but I'm thrilled that you are back on here!! This is the one place that you really will get understanding!!

Are you taking binders?

Are you basically on your own with your doc being that far away? Is there any possibility that there is one closer to you? I'm very sorry, I don't remember your details.

If you can let us know the area in which you live, maybe someone here knows of a GP that you can use that is "Lyme friendly" - not someone to treat your infections, but will at least understand what you are dealing with.

And - here's a big hug for you:
((((((((((hugs))))))))))

Thanks Traveler, back at you!! 'Sorry' seems to be the most used word in my vocabulary at the moment - Hell, sometimes I am not even sure what I have or haven't done, but it seems to smooth a lot of things over especially with the husband ;)

The doctors here in Greece will have none of the whole Lyme thing. period. (though the vets are pretty clued up ;) )

I am so glad I FINALLY got the internet in, got much catch up reading to do (don't get me started on a phone company rant, will ya!) I am glad to be back :) I will be able to arrange Skype calls with my LLMD back in the UK, but I guess it's just the daily slog that's been getting to me - when no one else says 'yep, I get you'. I seem to spend a lot of time trying to evaluate what it's all about, and where best to focus my efforts and could just do with an 'atta girl' now and again, rather than feeling like I have to justify the fact I feel like crap.

I have a rife machine en route (unless the greek postal system has got in cahoots with the telephone people - argh). I had a few bouts of rife treatment back in the UK and after some monumental herxing did feel better - I guess I also know I have to go through the 'feeling worse to get better' stage again and I am somewhat apprehensive - just I daren't actually voice that fear as I will get that 'yup, she's off nuts again' look!!!

Can you give me the low down on binders, please. I am on Buhners and pulsed Flagyl at the moment, awaiting a rife, detoxing my socks off and scoffing a variety of supplements. I will gladly chuck binders in there too if they will help!!!

Thanks Traveler

Thanks Traveler, I REALLY really needed to hear that today :)

Charcoal is easy!! And sounds like a good way to detox :)

LOL - yeah what you really need with Lyme brain is having to explain to the phone company (in greek) how to connect your phone line from the box opposite the house to the box that's already in the house while they suck air in through their teeth like you're insisting that they will have to set up a base on the moon to accomplish it. Of course that's just the phone line - internet connection is a whole 'nother department of retards ;)

When I can think in a straight line I swear I am going to write a book!!

Sillysheep, I'm so sorry you're feeling so alone and misunderstood . . . I really don't know why people don't get this, or can't be more understanding :-(. But I hope you feel better for writing it all down, and you really shouldn't apologise for doing so . . . this is the one place where everyone does understand, because we all totally get where you're coming from, most of us have experienced at least some of what you're describing, and above all we all want to help and support you and each other! I really hope things improve for you. Sending you a big hug xx

Hi silly sheep you are not the only one feeling alone did anyone have bad nightmares when napping i just woke up with an anxiety attack is this herxing a real nervous feeling i just switched to doxy and plaquenil 4days ago feel shaky and depressed like what is the point of all of this so i know how you feel and it sucks like were is that strong person i used to be . I am taking the takesumi supreme but i am on alot of stuff so not sure hang in there silly sheep you are not alone hugs

Silly sheep - I totally get your frustration.

I try not to verbalize anymore what I'm feeling - my symptoms "de jour" - as I'm sure everyone around me doesn't want an update everyday.
But, then I have my hubby thinking that I'm doing really well and should be accomplishing more around the house and saying that I'm in a rut. When I do verbalize about my pain, etc. I know he feels bad, but if I don't then he thinks I'm better and should be going back to work!

Catch scooter - I try not to nap - I wake up with the nervous system stuff - kinda shaky and anxiety, too.

At least we have each other to help us thru this crap!,

Thank you so, so much for your replies all.

My husband isn't dismissive, and I honestly thinks he tries his best to understand, but he just can't wrap his head around the fact that his wife who has always been confident, outgoing, downright bossy at times and busy doing a hundred things at once, now cannot answer random questions or decide what she wants for her dinner. I think it baffles him, and frustrates him, which I get.

I also seem to have completely lost the ability to 'read' peoples emotions at times (like I can't process if someone is joking or being serious - I get hung up on getting the words they are saying sorted out in my head and miss the sentiment behind them) so I struggle with sensible emotional responses. That in itself is massively irritating as I have always had a very dry sense of humour myself, and could always brush off even the most hurtful of comments. Now it's like things just don't process properly and also why I feel so humiliated by the doctors and stuff other folks say to me. Pre Lyme I am sure I would have gone off on one with the ID doctor who shrugged at my WBC count being all over the place (the only thing on my routine bloods that came back off) but he had already ridiculed my joint pains, fatigue, vision problems, chest pains, numb hands and feet, slurred speech etc, etc, and stated they are definately NOT Lyme symptoms, that I just wanted to leave before I cried - and didn't dare tell him about the state of my mental health.

I also have the most horrendous nightmares, catchscooter and am sometimes not entirely sure if I have woken up from since the anxiety from them can be overwhelming. I did speak to a friend of a friend when I was back in the UK, who is a consultant Psychiatrist, and discussed a little about the thoughts and feelings that pop into my head even when I am awake - often images or feelings from incidents years ago - and the best he could liken it to was PTSD.

I lost my internet connection, which I had only at work (but used out of hours, not while I was supposed to be working), because my boss banned me from using it. She said, 'looking stuff up about this supposed illness and talking to other people who also think they are sick will only make you feel worse, so stay off it for your own good'. I really took that to heart - in fact it felt like a kick in the head. I got myself in such a state when I got home that I think my brain just turned itself off completely. My husband said I was overreacting, which only served to make the whole situation feel sooo much worse. I couldn't speak, couldn't think, went into a state of complete disorientation, missed the text that told me I was due in at work the following day (I worked a zero hour contract, so never knew if I was due in or not) and when I did finally get myself together enough to check my messages, I had missed my shift and the message from my boss read not 'are you OK' or 'where are you?' just 'THANKS FOR THAT'. Honestly, whether I was overreacting or not, it was kind of the final straw for me, and I decided that enough was enough. Wrote a letter to my folks; the works.

Stupid thing is I daren't even tell people that was, and sometimes is, where I am at, since I have been told so many times that 'it's all in my head' that I am genuinely scared that they will take that as an assertion that they are right, and crap knows what will happen to me then. In the last 3 months 4 people here have 'had the flu', not felt better for a while, and commit suicide. I can't help wondering.....

Well, it may have taken me a couple of days to get that ramble down, and you don't have to actually read it, but I must admit I feel better for it ;)

Thanks guys xx

:-( sorry. We understand.
ID doctors are a waste of time and money. They do not seem to understand the complexity of lyme.
I remember that prior the tick bite, i could not understand chronic illness or pain because I never experienced it myself. I met people with fybromyalgia and thought that their pain was like the normal muscle pain a healthy person gets after a workout.... I could have not imagine that they were this intense. Now i know...
We are here for you.

I love your rambling, Silly Sheep! I'm cheering you on all the way!

I actually think it's pretty hard to not be posting about Lyme when it invades your whole life. Feel free to share any information that you wish - just keep it "family friendly" LOL!!!

Cripes - had a panic on there, Traveler....reread post in search of part lacking in family friendliness, lol! But no, it's OK....I think ;)

Still no word on my Rife machine. I think the phone company is secretly involved in the postal non-delivery service, sigh. I am due another round of Flagyl which I was hoping to postpone in favour of zapping instead. I swear carrier pigeon would have been more efficient.

On another note, it would appear that karma finally came round, as I got word that a dog bit my bosses thumb off. Yup. Right off. It is re-attachable - because, well, karma is not evil - but since it was a dog I normally groomed should I actually give thanks for Lyme right now? Probably ;)

And it's a circular logic, in a good way, that my rambling frustration has cheered someone up, Bellyfull, and so there's a thank you right back at ya :)

This world sucks if ANYONE feels alone, there are 7 billion of us so you wouldn't think it possible would you. Still if we feel alone together then we are not. I am liking circular logic today, can you tell???