Waking up feeling down

Lately it's been fear in the back of my mind 24/7. Since this new symptom started it's like getting Visual Snow all over again... fearful of it getting worse... hearing stories of it getting worse and knowing just how bad it can get. I have come across a couple of people who have the same symptoms, but it looks like they've gone on to college and graduated and never responded to their original posts. It gives me a hope in a sense, but I still can't stop thinking about the "What if"! I really wish the Visual Snow study would be published already.... I am so scared it will not show anything, but the fact that they will not release any news on it until it is published tells me they must have found something! God, how I pray they find something... something that gets us either closer or right face to face with a treatment. At this point if they told me to eat dog crap and it would make me better, Put it this way, you wouldn't want to come to my house! My migraines have been showing up again, but I reckon that might be due to me getting closer to starting my period although you never know when it comes to my migraines. They started with this Visual Snow BS and haven't left since!!!! Dang this visual snow and the hell it brings. I couldn't imagine having this my whole like like some people do... I just can't imagine! I guess in a way it would be good because they wouldn't know what normal vision was like and maybe they are saying I can't imagine getting this later in life. You know what sucks the most? My health went to crap at 24 years old. I worked out 5 days a week, had an active and fairly healthy lifestyle (Active beach bum), but was just under a lot of stress. Why did the Visual Snow hit 3 1/2 years later. I guess it was a little before then because I saw the blue entopic phenomenon, but still.... why did it slowly progress? Yes I was having migraines every now and then, but nothing major like I do now. I wish Dr.'s could just figure this out. I wish a Dr. would be truly captivated with this disorder and find a tried and true treatment. God, I hope that is Dr. Goadsby. I want my life back. My son is already 4 and I have never been normal around him. He doesn't know me as I used to be... free spirited, fun, loving, passionate... now I am just a stone cold empty shell of a human being who he calls mama. That sucks!!! So yea, back to my original post... I wake up feeling so depressed... It isn't a way to live. I hope it goes away soon... I just hate life like this..... It isn't life at all... it's wasted life..... I just feel like there is a barrier between me and the world... like all of my working brain is secluded to a small area.

Updates

So I haven't posted in a while, mainly because I have been scared as all get out over this newest symptom. I have been plaguing myself with anxious thoughts about not being able to travel, not being able to drive my son anywhere, etc., etc. Yes, I still have those moments, like tonight, but I have been having some decent days. I did recently leave my job after 8 years and that sucked. After that amount of time you get pretty close to everyone and they start to feel like family. I miss them a lot, but I have faith that there is a reason that my journey called for leaving the company. I am now applying for disability, but not expecting to win it, why would I, they have no clue what visual snow is let alone what the heck I am going through... that is what makes this diagnosis so complicated. My own family have no clue because I look so dang healthy on the outside. Even when I have horrible migraines I still appear normal on the outside... well almost. I guess I just wanted to come on and say... I am still here. I am still fighting this fight with an unknown opponent. I am still waiting for the results from the Visual Snow study to come out. I keep thinking... how did I get that chance to fly out and participate and more so how did I get visual snow. There has to be something good coming our way.... I can't explain it.. even on my worst days I still have a lit glimmer of hope that says we are going to get through this. To have my life back.... a million thank-yous wouldn't suffice. A Billion tears over an indescribable joy would be where I would be left.... I try to imagine that day and make it present. Here's to getting better!!! God Bless, Candi

Updates

So I am still here... not really doing much in means of treatment for Lyme. I am waiting to hit the lotto! I have the flu or had the flu which left me with a sinus infection. My vision is worse some days and better on others. I am still living in fear of this getting worse and wondering how I will get on in this world watching people who appear to be normal... heck... I appear to be normal, but you know what I mean? To think at age 24 all of this happened to me and I haven't lived my life the way I would be if I didn't have this horrible condition(s). I just wish someone would be willing to run extensive tests on me, study my brain, do something... I just pray that I can get my life back one day and truly get to live it. My vision therapist is very pro active to finding a resolution for me and I love that about her... I just wish I trusted that it was possible to help me by just wearing lenses and having vision therapy. I mean it's my brain that is producing the problem.. I am still waiting to hear back on the visual snow study... no news yet...

Lyme and Me

My brain.... oh my brain! I am given documentation that I have Lymes and yet my brain still tells me "NO, your answer CAN NOT be that easy... You see... you have strange visual symptoms that very few Lymies mention.... if you had Lyme why do you have those symptoms?" Oh yes, and there is also the obvious speculations that Igenex produces false positive (why anyone would do that, I dunno). Do I believe this... Not really, but I always like to give people the benefit of the doubt lol. I have seen a lot of stories with people who have tested negative through CDC Western Blots, like me, and then positive through Igenex and CDC WB, like me. I have also seen a lot of people who have tested negative through Igenex, but continued to treat and have gotten better. I am stuck in a situation.... because of my vision symptoms I am scared to treat with antibiotics because many VS'ers say their vision stuff started while taking ABX (Antibiotics). I am at the moment taking a supplement called Samento. I have noticed an increase in brain fog and have been very tired... but maybe that is the alcohol content in the product... not sure. I plan to soon as some other supplements into the mix and also get a book that recently came out by Dr. Horowitz..... If only I had a ton of money........

Igenex Lyme test

So I sent my blood to Igenex three weeks ago and patiently waited for the results. I was expecting anything of real value to come back, but boy was I wrong. I was sitting at home with my husband and son watching tv when I got the call. My test results were: IgG Negative - Bands: 41++ 58+ 39 IND (not able to determine) IgM Very Positive - Bands: 18++ 30+ 31++ 34+ 39+ 41++ My PCR test was also positive My Lyme Imuno Assay was negative with one test (not sure) but positive with the whole blood test. So what this means is.... I have Lymes Disease. I have Babs and Bulg (not sure how to spell these two) antibodies. I have spent 7 years living in a fog and dealing with these bizarre symptoms that have only been getting worse. I have been so disconnected from reality for so long that I've watched relatives die, pets die and just didn't know how to react all because of this disease. What hurts the most is that this started in 2006 and I was so out of my head that I barely spent time with my mom when she needed me the most in 2008/2009 and I didn't get to be with her before she died. I hope she understands why, now, and that one day I will get to see her again and give her a big hug and a kiss! I don't know if I should cry or have a party. If I cry I won't have to worry about my vision issues, if I have a party, sensory overload, so cry it is!!!!! I am going to start posting about my recovery on this site, along with some videos I will be posting on Youtube. Will update after Monday when I see my LLMD. xoxo God is great! Though I screamed and yelled at him many times, I asked him to show me the way and he did. Never, EVER, give up hope that YOU can find an answer to your problem, and that YOU CAN get better!

Visual Snow Study

So tomorrow is October 25th 2013- The day that Dr. Christoph Schankin will be announcing the result of the study I participated in. For the longest time I was regretting this day.... maybe because I am not expecting good news... or maybe because it makes it official that something is wrong with my brain. Both of those are scary things to me. I am not getting my hopes up that anything was really accomplished from the study. I know rumors are getting tossed around left and right and most of the things talked about are ridiculous and I HOPE are not true... (I am speaking in terms of treatments). Out of all of this... I just pray that there will be a day soon where I can wake up and just be normal. I want to be able to see normally, think normally, hear normally and feel normally. I want to be the person I was 7 1/2 years ago. I want my life back!! I want to have another child and be able to give my all to him/her. I want to be complete and whole and more of a mother to my son and the same for my husband. ::Deep Breath:: I know God will take care of me no matter what.... I know he will take care of YOU no matter what too. I haven't written in a very long time, and so when I finally picked up a pen the other day, I was beside myself with what I wrote. It has to do with what I experienced when I was younger- growing up. My mom struggled with depression all the way up until she died. She also had an undiagnosed illness which she always worried about. This is what I wrote: I was just a child when my world changed she was just a mother in pain I am just a mother in pain he is just a child, his word changed I couldn't believe it... but am glad I wrote it. It will always remind me that I am what my child see's. I don't want to be a miserable dim light to my son, I want to be the world to him like he is to me. I have to find that light!!!

Lymes testing and more

So I got my blood drawn through my Naturopath's office on Wednesday morning. It was sent off to Igenex that day. I am feeling a little so-so about the test. I honestly am not expecting anything to come back showing Lyme. I just wanted to rule it out since I had the positive Elisa. My next test I was to do is the co-infections to see if I may have something. I know that thing like CMV can cause a positive Lyme Elisa, so I want to get tested for that too. Also there are other things too that cause trip it into a false positive. I go to see the vision therapist tomorrow. I am hoping she has some exercises that she thinks may help me. I have some other odd symptoms I have found too that I am going to share with her. I have self diagnosed myself as having visual dependence. I think my eyes have taken over for my ears. That would explain why I am not stable when I close my eyes. I have very good night vision, but as far as my eyes go, it's tough.