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.

The mind that plays tricks

I have been hearing a lot about how your mind can do radical things. Just by thinking a single thought your brain actually recognizes those thoughts. If you keep thinking the same thoughts the brain connects those thoughts as normal. So say you are anxious and worried about a health condition... chances are the more you think about it, the more likely it will happen. For me it's been this vision stuff going on. Because I only experience it when looking at moving cars I have kind of been the odd man (woman) out because I can not find any information on it. But looking into the board for Visual snow I found a few people with symptoms similar, but more distressing. So... I automatically labeled myself as having that problem. Even though it is literally 3 people out of 1,300 people. Chances are that is not what I am experiencing, but because I have been thinking about it, I have been training my brain for it, so now I question every little thing I see. My boss came in and asked me how I was doing today. This of course caused me to start crying. I thought I had big issues a few years ago with visual snow, but this one takes the cake. IF it is what the few people on the VS board have then that would be crappy. To not see in fluid movement would just be pure crappiness. I know the study results will be out soon, but I still see VS as permanent..... that is just a part of my brain that has been through enough.... I have had enough! There is a part of my brain that is staying hopeful however and believes a cure is coming. This part of my brain also believes that what I have going on with my now is strictly from my vestibular issues. I have been trying to hunt down this episode I watched on mystery diagnosis the same year my mom passed in 2009. I don't know when the episode first aired though nor what it was called, but the guy had the same thing my mom had. It was some type of rare infection in the brain that caused lesions and I believe he was having seizures too. I wanted to look more into this to see if maybe I have it too and am thinking maybe I am having absent seizures? I dunno... I am just so tired of being sick. I have sat back and watched all of my friends move on in life having so much fun with their family and here I am stuck. I am an observer.... I see my sons smiles and I just think about how I could be a better mom to him if only I was better. Why did God give this to me? And more importantly why hasn't he taken it away from me....... I just want to get better!

Verdict is in..... Nystagmus caused from a decompensation of my vestibular system

So, I have been looking around on the internet trying to find what i can mainly about my vision issues. (seeing cars kind of wiggle while in motion). I have heard this called frames before and have made the mistake of calling it that because that is not what it is. The cars literally wiggle back and fourth in a jerky kind of movement. It's like my brain is capturing the image but shaking it very slightly. If I watch a bunch of cars in a row moving, oh well, this is scary. Everything starts doing the same but it feels and looks like everything is going in fast motion. Well my neuro-otologist said Optokinetic Nystagmus. My Neurologist/headache specialist said optokinetic nystagmus. And I said - I DON'T HAVE A NYSTAGMUS! I have recorded myself (stopped st s red light) watching these cars pass and see no jerking. I consulted a well known vestibular board who has a Dr. who usually comments on members' posts to lead them in the right direction. He told me he thought it sounded like nystagmus. (3 Dr's claiming nystagmus - Zero Bilateral Vestibulopathy patients telling me what this is.... maybe because it's rare and I haven't had any luck finding any). So I went to my Neuro-otologist looking for some answers. He told me he has heard of it before and to stay off of the message boards. He said the worst people are on them (those suffering with their health conditions- but it makes sense, because they are looking for answers). He told me some nystagmus can not be seen with the eyes. They would have to use special goggles to pick this up. He didn't offer to do it, but reassured me it was normal and that I need to start doing my VRT again and also he agreed that some Vision therapy may be helpful as well. He said the brain just needs to re-compensate. So I left with new-found hope! Today was a little down as I started having negative thoughts about this getting worse or turning into something else, but then I remembered... I am going to get better, not worse. I am going to beat this!!!!

Stool sample

Wow, I said it.... Stool sample! I am going to take a stool sample!!! I grew up in the era of Beavis and Butthead so I am not, as one might say, prude. I was raised in a non modest family. Here's an example.... our family thought it was funny when any time someone was in the shower or using the bathroom that we would fart on the door so that it would echo very loudly. (Wow, I just said that too) Now that I got that out of the way.... I am taking the stool sample mainly to check for candida, but also because I have been having issues with diarrhea (cha, cha, cha- you knew that was coming). I have had it for well over a month and 1/2 now for no good reason at all. Not that I can justify a good reason for having diarrhea (cha, cha, cha). So you are given this plastic-ish type french fry tray that you have to literally poop on. (put your gloves on first) Then you use the enclosed plastic spatula to dissect your poop in three different areas and place those portions into assigned plastic tubes. Once that is done you pack it up and call the FED EX man to come pick up your poop! My husband will have three of his life long friends in town this weekend and I am planning to do my "specimen collection" then. No, I did not plan it that way, it just happened to "fall" on that day. Okay, enough toilet humor.