Wednesday, September 30, 2015

And Then...

While I wasn't planning on going this long between updates on my Whole30 adventure a little medical issue kind of got me sidetracked. I can't really say you've missed much though. Here's what I can say: Today is day 24 and the cravings are still there just like they were on day 1. I haven't totally adjusted to my coffee without sugar. Eggs everyday isn't completely terrible. Sugar is in just about everything. 30 days isn't going to be long enough for me. 

In the 3 weeks and a few days since starting this journey I can tell that my skin has continued to improve and I have lost some more weight. Both of those things had started earlier this year with the elimination of gluten and a reduction on dairy and sugar. Going the extra mile has just continued those benefits. However, increased energy, reduction in pain, improved brain function or just a general reduction in the symptoms due to my illness hasn't happened YET. I emphasize yet because I have come to face the reality of just how off my diet has been and for how long and the bottom line is it's going to take longer than 30 days for my body to adjust. My doctor is also doing the Whole30 and is a few days behind me. He is always excited to hear how its going. While he was beyond impressed that I had been successful this long, he was a little disappointed that I had not had more noticeable improvements. I told him the honest truth about my life long sugar addiction and he let me know that I was very fortunate that I had not become addicted to drugs or alcohol as it is fairly common for people with such a love of sugar to become addicted to other things. I would say he agreed with my assessment and it will take me a little longer but good things are happening even if I don't see the changes yet.  

While I consider myself successful to this point the creators of this program would say differently. Tough love is certainly a tactic they use. Here is where I have "failed" in these 24 days. The first 2 days I took my digestive enzyme like normal without realizing that is contained milk. Towards the end of the 3rd week I drank about half a bottle of a chia seed drink that I didn't realize had agave in it despite reading the ingredients a time or 2. Both of those things were accidental but the program says regardless of the reason they believe you should start over. For my own sanity I was not prepared to go back to day 1. The other times I made a conscious decision about something I ate that they would consider non compliant.  Both items were fine ingredient wise but not in keeping with the general spirit of the program. I ate about 5 french fries and a few handfuls of Terra Chips. I actually planned on eating a whole order of fries but immediately knew I it was a bad decision and that I would regret it. The fact I stopped eating them is a success in my book. The chips I initially ate due to poor planning and their availability. I can see why the plan considers them food without breaks. It would be very easy to sit down and over do it. They both helped fulfill some kind of craving. I am not going to beat my self up over those decisions and am still considering my self a success up to this point. 

I will say that this process is definitely hard. Certainly harder for some than it is for others. Here is where I have struggled  and know that I can improve in the future. First and foremost is the sad shape of my diet up until this point. These are significant changes to make. I am telling you, sugar is in everything. So when you think its not a big deal to primarily eat meat and vegetables try finding compliant deli meat or bacon or something to dip your vegetables in that does not contain sugar. Second is the fact that I don't feel good and lack energy to get through the day everyday. My lack of cooking skills and planning goes hand in hand with #2. If I felt better and had more energy things like cooking, cleaning and planning would not seem like such overwhelming tasks. Lastly having kids and a husband who aren't on the same plan. (at least not yet) makes it a little more of challenge. I will say my family has been very supportive of me though. I realize I am not eating enough vegetables or fat at every meal. I also had a week of not eating enough due to my little medical problem and I haven't quite gotten back on track yet. 

I have not made a decision on what will happen on day 31. I can choose to follow the plans reintroduction of foods and see which ones I can tolerate on some level, I can continue as I am, or I can quit and resume the diet I had. I really don't consider quitting an option so I am left with the first two. My gut feeling is I will reintroduce somethings that I know will be helpful in me maintaining a much better diet for the long term. I already know I am better without the gluten, most dairy, and added sugar. These final 6 days could be a game changer though and maybe I will take on another 30 days. I know everyday beyond the initial 30 that I can do this will only be a benefit to me. I will certainly let you know what I decide.

I'm sorry this post is a little long already but I wanted to give an update on what else has been going on health wise for those that are interested. A little more than a month ago I started IV ozone as my latest treatment for Lyme and its associated problems. Treatment was once a week although I did have a week off since my doctor was out of town. After the first treatment I was definitely more tired. After the second treatment I was not only more tired, but had the return of some awful nerve pain. I had random bouts of burning pain that appear almost any where on my body. We had some rainy weather during this time and on a few occasions when the rain was just beginning to fall almost like a heavy mist any exposed part of my body would sting with every drop of water that touched it. I had not experienced this since before I was diagnosed. While it was frustrating and uncomfortable I took it as a sign that the ozone was killing off some bugs and that it was just part of the wonderful herxheimer (herx) reaction so often associated with Lyme. The random burning and increased fatigue have unfortunately decided to hang around for a while. 

The third treatment brought about some very unwelcome symptoms that temporarily turned my world upside down and left me wondering- "What the hell just happened?". And as usual I am not sure we have a definitive answer to that question. My treatment went as usual that morning and I headed home. I was tired as expected and knew my busy evening with back to school night and softball practice may require a little extra push. About 4 p.m., I was sitting at my desk, when head to toe pain washed over me like a wave. I was suddenly hit with some of the most severe body aches I had every had in my life. Every move I made hurt and my skin felt bruised all over, I was suddenly dreading the night ahead of me but figured it was important for me to go and it would be a distraction to what must be a severe die off from my treatment early that day. While I managed to get through back to school night it was not the distraction I hoped it would be and I felt worse with each passing moment. I finally made it home where I took my alka seltzer gold that usually helps reduce my pain and decided to detox with an epsom salt bath. As the bath water ran, I took my temperature and it was 99.2. While most people wouldn't consider that a fever, for someone who runs a degree or two below normal this could be the start of a low grade fever. I took my bath and then climbed into bed. It did not take long for my heart to become very unhappy. The rate seemed high but more concerning was the feeling that it was skipping beats or throwing PVC's every minute or two sometimes more. I let my husband know he needed to come straight home from softball practice because something was wrong and I didn't feel good. ( I was also having severe left sided ovarian pain which is normal for me but this time was more constant and intense) Was this all related to an ovarian cyst? Did I pick up the nasty virus going around the kids school? Who knew but I was miserable. I was not new to my heart acting up but it doesn't make the episode any less scary. I let this continue for a couple hours before giving in and calling the doctors office. The on call answered and said while they had being seeing patients with body aches and fevers come into the office the heart thing was concerning and it was best I go to the ER.

Fortunately we have a hospital with in about 5 min of our house so I was comfortable enough to take myself and let hubby and kids stay at home  since it was about 10:45 at night and they didn't need to be around all those germs. The whole way there I prayed that they not only figured out what was wrong with me but that I didn't get laughed at or scolded about my Lyme diagnosis and my current choice of treatment. You may think its crazy for me to think that would happen but it already has. A Lyme patient has the constant debate when seeing a new medical professional on weather or not to bring up Lyme fear of what they might say. It was also important they found something. I have more been to the ER more than I would like and have had them find nothing which is also typical for a Lyme patient. Or they find something wrong but it doesn't appear life threatening and they don't know what is causing it so you are sent home with no answers. The last thing my body needed was anxiety over going to the hospital so I just prayed. I got the ER and it was packed. People wrapped in blankets with masks covering their faces made the germ a phobe in me come out and I wanted to run the other way. I checked in though and tried to make myself comfortable for the long wait that was ahead of me. 

I made it to triage fairly quickly where all the typical questions are asked and your vitals are taken. The nurse was doing everything with a doctor sitting in to monitor. Temperature was 99.2 so no "fever" but my heart rate was a shocking 130. Based on symptoms and history they were going to run multiple labs and tests. This included a pelvic ultrasound for ovarian pain and blood cultures because this could be the beginning of sepsis since I had been using my port. They also threw in a chest x-ray for good measure. Tests and labs were all done fairly quickly but I had to wait for a room as I needed to be seen in the main part of the ER. I was finally called back at about 3 am. The attending doc went over my history again and agreed with the possibility of sepsis. Another culture was taken this time directly from my port and an abdominal CT was ordered. My heart rate was still running between 120 and 130 and my temperature was now 102. I was blessed with a doc who didn't laugh at my Lyme diagnosis, who didn't really know about ozone as a treatment but was going to research it and was familiar with a herx reaction. Ultimately, they found an ovarian cyst and something on my liver but nothing urgent they needed to deal with. They did give me a dose of IV antibiotics just in case and stated blood cultures would take 24 to 48 hrs to grow something. Since my heart rate had come down to 105 they would let me know go and call me if the cultures were positive to have me admitted. I was released about 6:30 that morning. 

While the pain was somewhat better I was now extremely nauseous and running on no sleep. I came home and went to bed. The waiting for blood cultures brought on some anxiety. I wanted someone to call either way so I knew things had not been overlooked. I decided to call the next morning at the 24 hr mark and was told we will call you if its positive, The phone never rang. I called again the next day and explained I just needed confirmation things were ok (my doc had called to check on me and said he definitely suspected sepsis due to the high fever). I was told to call back on Monday when I could talk to the lab and they would help me out. 

Just yesterday I was telling this little tale to my acupuncturist and when I got to this part of the story I said "and then" and he stopped me. He said "And then? Really Jessica there is an and then?". By now he was used to my crazy stories and we just laugh about it. So,,,I called Monday only to be met with resistance. We can't tell you anything. You have to go to medical records. The ER was wrong. I couldn't even fully get my question out before it was apparent I had to go get copies of my medical records for my 8 hr stay to find anything out. The process wasn't terrible bad but the results were a little shocking and once again left me with the thought that the medical community is in trouble and certainly leaves something to be desired. It is imperative that you are your own advocate and must not take everything you are told at face value. 

As I flipped through the 40+ pages I was handed I found a variety of information some of which I had never heard about myself. Blood tests indicated high CRP, WBC and Neutrophils with low Lymphocytes. Urinalysis showed high ketones which most likely were from my new eating habits and the fact my body was burning fat instead of sugar. The urine culture was contaminated and they wanted a repeat which of course never happened. The 3 blood cultures all indicated no growth but they were only preliminary reports and 2 of them were given before the 24 hr mark. While my ovarian pain was on the left side they found a cyst on the right. I can only assume the pain is related to the varicose vein in my pelvis we discovered a year or so ago. Chest x-ray was normal. Now on to the CT. It is noted that I have a probable hepatic hemangioma on my liver. Follow up is needed to confirm this but there is not much concern. Up to this point everything I read they had mentioned to me with the exception of the blood cultures. 

Now I begin reading things I have never been told about myself and most of which I have never heard of. This is where I am just special like that. Random weird and sometimes rare abnormalities that may or may not be something of significance. But in any case it would be nice if someone mentioned it. If it's important enough to note in the medical records could it be important enough to mention to the patient?  The list includes a small umbilical hernia, a sclerotic focus on my left iliac bone, extrarenal pelvis bilaterally, a cyst on my lower right kidney, slightly enlarged spleen, and multilevel bulging discs causing a narrowing of my spinal canal and a diagnosis of degenerative disc disease. Reading these things caused mild a panic and serious frustration. Trying to weed through what may be important and what was not was something I had to do until I could see my doctor and confirm. This is where some knowledge can go a long way. I like to feel some what educated when discussing things with the doctor. I don't want everything to be over my head and I don't want something to be missed. After all people in medical community are just that, people. Prone to mistakes like everyone else. The issue is their mistakes can be life or death. (I almost terminated the life of my youngest daughter due to someones mistake. A story I may have shared years ago but will share again another day) After consulting my chiropractor and doctor it was decided most of these things were of no concern and just extra information. I do have to follow up with an ultrasound of my liver.

As far as my my blood cultures and treatment doctor agreed there needs to be a final report on my blood cultures and is in the process of obtaining those. He also believes that after almost 5 years of having my port in there is most likely bacteria in the end of my line and each time we use it we would be flushing that in to my blood stream causing what could lead to sepsis. It has to come out. So tomorrow I go and have "Donald"removed. Ozone has been suspended for the time being and we will reevaluate once the port is out. I am nervous about doing IV treatment with out it but will do what ever is deemed necessary. The Interventional Radiologist office will be sending the tip of the catheter in to be cultured for bacteria once it is removed. I am concerned about the possibility of bacteria being dumped in to my system during the removal and have left a message requesting antibiotics just in case. 

I am hoping to get back on here and check in in a few days to let you know how things went and if I have any new information. I certainly would appreciate extra prayers and good thoughts tomorrow. Thank you to everyone who has followed my  journey over the years. It is strange to put this information out to the world sometimes, but it is therapeutic for me to get it out of my head and some of you really want to know. So again thanks for your support. 

Monday, September 14, 2015

Sugar Demon

Well, I've successfully completed the first week of my Whole30 and am starting day 9. It hasn't been easy but it's getting easier. I have never quite mastered the cooking world. I mean I can get buy okay and lucky for me my hubby is fairly simple guy but I don't break out a cook book often and stay away from anything I would consider complicated. Add in the fact that our family has been in a serious eating out rut due to my level of fatigue and our schedule it is has been a little of challenge getting back in the kitchen. I don't doubt that these things contributed to my first being a little bit of challenge. Lots of tuna salad, scrambled eggs, and chicken filled my plate each day with a side of celery, carrots, and apples. I am determined to figure out some new things to eat this week. I really need some red meat in the mix.

I have been reading labels for a while but it is really eye opening to read the label of everything you area considering putting into your mouth. While I am allowed to have deli meat or any meat for that try finding bacon, turkey, ham or even sausage without sugar in it. I was so tempted to throw things in the grocery out of frustration with every label I read that had something non compliant in it. I finally got a little bit of break at Costco and found Adelle's Chicken Apple sausage that I could have and I splurged on shrimp platter for my self. Of course I had to forgo the cocktail sauce but at least it was a change.

The first week was also filled with lots of symptoms again not knowing for sure weather it was the ozone or the change in eating habits or just a major flare. I suspect the first two are likely culprits. The ozone probably killed some bugs and the lack of sugar probably made the candida and lyme angry. So I was left with lots of fatigue, pain and weakness in my arms and legs and twitching episode or too. The last few days have mainly been filled with fatigue so I consider that an improvement. 

Unfortunately my cravings have not gone away. There are a million things I would eat at the drop of a hat right now but the one thing they all have in common is sugar. I have decided I don't just have a sugar monster, or a sugar beast. No I am dealing with a sugar demon. I really shouldn't be surprised, I mean I have been a sugar-a-holic from the time I was a kid. In the summers when I would go to work with my dad at the construction site I would take every opportunity to eat the sugar cubes in the job trailer. In highschool a snack would be Reese's Peanut Butter Cups and a Dr. Pepper. Oh and when my best friend and I were having a sleepover so we could head to the beach early the next morning I would make sure I brought ice cream for breakfast. While I was hoping those cravings would have started to fade already I do believe they will in time. I'm beginning to think that I may be looking at a Whole60 or 90 instead. I do know the husband and kids are going to have to participate in the next round. I want the girls to start making those much healthier choices now especially with their recent Lyme Diagnosis. 

I guess that's it for now. Time to figure out whats for dinner! I'll check back in in a few days.

P.S. I forgot to mention the other thing you give up for 30 days...the scale. It will be fun to see the changes 

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