Monday, September 7, 2015

Lyme Times 3

I was thinking it was time for an update and that had probably been over a year since I last posted anything. I was surprised to see that I had actually posted something back in February but honestly had no idea what I would have said and had to read it to refresh my memory.  Figuring out where to begin and what to tell any of you who may read this is always a difficult task. My thoughts are so scattered and I get distracted easily. While writing down a list of things I want to cover and in an order that makes sense could be useful the effort and time it would take me to do that would probably mean I would never get to posting anything. Frankly most of you are probably used to my rambling at this point especially since I seem to talk the same way. Just be prepared the brain function has diminished a little goes nothing.

I'll start with an update on my girls who turned 12 and 9 over the summer. Both of my girls have suffered from some seemingly random complaints and symptoms over the course of their lives. The list has included hives, chronic stomach pain, leg pain, nystagmus and dizziness to name a few. On occasion these things have warranted a trip to the doctor or specialist and resulted in numerous tests. We've gone through blood tests, x-rays, mri's and other tests checking for allergies, hip dysplagia, brain tumors, dyslexia, and cystic fibrosis. The diagnosis's we were left with were allergies, sensory processing disorder, a chiari malformation and a syrinx. When I was diagnosed with Lyme back in 2010 and discovered it was very likely that I had passed it on to my girls during pregnancy some of the things they were experiencing began to make sense. I knew we needed to get them tested for Lyme at some point but also knew that a blood test wasn't definitive. This summer I think we reached a tipping point and we finally had the test done about a month ago.

My oldest daughter had been experiencing random dizzy spells for over a year. They were only lasting 30-60 seconds and never seemed to correlate to anything specific. I was bothered by them though and took her to her pediatrician. To make a long story short we were sent to a cardiologist, diagnosed with a completely normal "arrhythmia" and told if the dizziness continued to see a neurologist. So we ended up in the neurologist office earlier this year. The doc confirmed my daughter had vertigo and ordered an MRI any possible causes. The MRI showed a small chiari malformation where the cerebellum was being pushed down into the spinal column. We were assured it really wasn't a big deal, that it probably wasn't even the cause of the dizziness and that out of an abundance of precaution we should do an MRI of the spine but to expect nothing to come of it.

When the phone rang just a day after the second MRI I knew they must have found something. While the doctor did her best to remain calm it was easy to tell she was still in shock and not sure how she should tell us she had been wrong. The MRI revealed a syrinx between the C4 and C6. This means that spinal fluid has been forced inside the spinal column. We were told we needed to consult a neurosurgeon. The initial recommendation from the pediatric neurosurgeon in San Diego was to do decompression surgery which required removing a small piece of skull hopefully relieving the pressure on the cerebellum and allowing the spinal fluid to go back to normal or at least not get any worse. We got a second opinion from a pediatric neurosurgeon in Orange County who advised against the surgery for now. After a 3rd MRI, some research, prayer and another doc appt we decided against the surgery for now and will just monitor the situation. Neither doctor believes this to be the cause of the vertigo. So we are left with something new to monitor and still no answer for the vertigo. This was my breaking point and I knew we needed to follow through with testing and see if Lyme was something we were dealing with.

I really like our pediatrician, the fact she is somewhat close by, and that I have Children's Hospital urgent care around the corner from our house, I didn't want to change doctors just for the purpose of Lyme so the decision was made to take the girls to my doctor and pay cash. Unfortunately I had to take them alone and I was so worried about the screaming that would come from my 9 year old over getting a blood test, It was a very tense morning, and it took 10-15 minutes of physically holding my baby down to get the blood drawn but we did it. Now it was just a waiting game. We did the test thru IGenix which is one of the best labs for Lyme testing and after about four weeks we were able to meet with the doctor and go over the results. I'll spare you all the details of how to read a test and what they really mean but the bottom line is my doctor diagnosed both girls as having congenital Lyme disease. I can't say I was shocked and it wasn't going to change much but know we had an official diagnosis and could go forward with formulating a game plan. Although my doc would really  support antibiotics we are going to approach this from a much more natural stand point for now and see where we can go. Besides the physical side affects of abx there was some concern that being on multiple medications for months would have them begin to take on a sick mentality. We want them to live life to the fullest and not let their brain trick them into thinking they have anything to hold them back. Obviously we have a long battle ahead with Lyme times 3 of us. Praying we can get a handle on this before it gets our of control.

Now on to me. I am still believing that 2015 will be a game changer in my fight. Besides my own determination there has been some much needed to exposure to this disease and new ideas for treatment seem to be constantly emerging. Some unconventional blood testing showed I was probably suffering from leaky gut, serious candida issues, among some other things and it was the push I finally needed to clean up my diet for real this time. Just before Mothers Day I decided to cut out gluten and significantly reduce all grains, dairy and sugar. I must say I was proud of how well I did and it certainly wasn't easy. Turning down the fresh bread at a restaurant, avoiding crackers, chips and the fresh baked chocolate chip cookies, cheese on anything and pizza at the team parties was hard but overall I was more successful than I had ever been. While I lost between 10 and 15 lbs with no exercise, the bloating went away and my skin cleared up a bit I had no noticeable improvement in how I really felt. I couldn't say my pain was gone, I had more energy, or my brain was working better, It was frustrating and while I didn't revert to my old ways I definitely began to give in more often. This past week I was at my doctors office having my second ozone treatment (more on that in another post) and he told me my blood looked good. We began talking about the changes I had finally made and he encouraged me to do the Whole30. I came home and began researching right away and decided I needed to go for it. There are a lot of great success stories involving Lyme Disease and I knew it was worth a try. I am planning on keeping more of a running blog about my Whole30 experience like I did when I went to Hansa a few years ago. I'll give you the basics of the plan  (diet is not the right word for this) and tell you how the first 2 days have gone. 

By doing the Whole30 I have committed to no: added sugar of any type, grains, dairy, legumes or alcohol for a minimum of 30 days. NO CHEATS! NO SLIPS! NO EXCUSES! Meals consist of protein lost of veggies, some fruit and some good fat. In preparation for this I decided to get a little crazy with eating junk for a day or 2. Not smart as I my gut paid for it but I got in a slice of cheesecake, the most amazing chocolate pudding, a soy latte or two, a quesadilla and cheese enchilada, some pita get the picture. The timing of this may not be great as I am finding that my ozone treatment is stirring stuff up but I determined to push through this. My pain the past day or two is at an all time high. My abs hurt like I have been doing crunches for a week and I've done nothing that should make them hurt. I mean it hurts to turn over in bed. My exhaustion is through the roof and I was essentially bed bound yesterday sleeping most of the day. I'm really a wreck. I'm waiting to see an ENT as I have had a sore throat, losing my voice, trouble swallowing pills, and a host of other problems for over a month now. Needless to say I am kind of in a desperate spot. This will make it somewhat difficult to determine what things are coming from diet change vs treatment or just a flare in symptoms but it almost doesn't matter at this point.  I can say extra prayers are certainly appreciated. 

Back to the Whole30. I haven't been super hungry these first two days but my cravings have been significant. I really want chocolate and just about anything I can't have but I'm holding on to hope that these cravings will pass. It is truly a moment by moment decision to stick with this. I'm trying not to focus on day 30 but on each moment or craving as it comes. From what I have read, I may be doing ok craving wise by day 10 or so but I also may be wanting to punch everything in my way. So my friends be ware. Maybe I will just stay in my room that day. 

Right now my overall plan includes lots of supplements putting me at about 25 pills a day, essential oils to support my body on a million different levels, blood ozone, and the Whole30. Things I am looking at possibly doing next....UVL, LDA and even dare I say medicinal marijuana. I will post more on all of those things as I keep you updated on the Whole30. If you have done the Whole30 I would love to hear about your experience. Until next time 

No comments:

Post a Comment