Beautiful Mess

As the 6 year mark since my Lyme diagnosis approaches I am amazed by the fact that this journey continues to teach me, stretch my faith, and push the limits of what I thought possible. While I tell people that I am really no better then when I started treatment which is true in a physical sense I am certainly different. I have grown in many ways and just when I think I'm done a new challenge comes my way the process continues. My journey toward better health started many years before my Lyme diagnosis. I sought things that may provide relief from my little complaints at the time but November 2008 is when I truly knew something was wrong. Unfortunately as I sit here all these years later, I fell like I am still scratching at the surface of what is going on with me. While Lyme Disease is definitely part of problem I am not sure I could give it a percentage of how much it plays into my struggles on a day to day basis. My beliefs on the whole thing continue to change the more and more I learn. Lyme Disease is a significant problem, hard to treat and can be fatal. However, as I continue to discover and now believe it is chronic dysfunction or dysregulation of the body systems that are truly the issue. A few years ago one of the top Lyme doctors renamed in MCIDS (multiple chronic infectious disease syndrome). That is a step in the right direction but I feel like if the body we functioning the way God originally designed it to function, then the infectious disease part wouldn't be such an issue. This is as far as it goes for me though. I don't have a doctorate of any type in any thing and I really have no desire to get one so I am sure this will just remain my opinion based on my own personal experience. 

I came into 2016 with lots of hope but I also felt like I had a game plan. I temporarily lost that hope when I went to one of doctors appts and left feeling once again like he had idea what to do with me. I vented my feelings to my fellow Lymies was flooded with encouragement and suggestions. Bee Venom Therapy (BVT) was one of them but I am just not ready to even entertain that idea. What was I going to do? We got money back from taxes and while we were focused on paying off as much debt as we could we saved a little fun money. While the hubby and kids were plotting their fun purchases I decided to put mine towards seeing yet another doctor. I had high hopes as two of my fellow mommy friends with Lyme were seeing him with some good results. I just didn't know (and still don't) how much I can get before the money once again runs out. In any case I figured it was worth a shot.

Enter Dr. T. I must admit I have been frustrated with the fact that I didn't know about him before I flew off to the Land of Oz in Kansas 4 years ago. Much of what I had read about him sounded just like where I had been in Kansas and he is local. Saving a few grand on airfare, hotels, etc...would have been a nice addition to put towards treatment. I realize though that I was probably not ready for what Dr. T was going to tell me had I seen him before now and I certainly would have missed out on meeting some incredible people. Back to Dr. T, my friends were so excited I was going to see him. One of them even said to me that they thought I was really ready to see him since I had been committed in taking on the Whole30. If I only knew what that was going to mean. 

Last week I finally had my highly anticipated 2 appts with him. I had filled out my new patient paperwork, including a checklist of over 200 symptoms, and sent in my current med/supplement list and a health history narrative. Then I found out he doesn't even look at that until after your first appt. He doesn't want any ideas in his head of what may be going on with you. I totally get that and actually really appreciate it. It reminded me of how I didn't like the firefighters to come up and talk to me when I got on scene of a fire until I had a chance to look around and use what I had learned about burn patterns and indicators to give me an idea of where the fire had started. It was harder to be objective looking at a fire when someone told me a bunch of information before I had looked at anything. Smart doc, I like it. 

I guess I should back up and tell you that Dr. T is a functional medicine chiropractor. Bring on the muscle testing, zyto and other unconventional forms of testing I had come to appreciate over the years. Now because the doc knew I was friends with 2 other patients who had Lyme he added that  and all the co infections into my testing. As a side note at least 2 forms of Lyme bacteria, bartonella, babesia, erlichia, a systemic bacterial infection, viruses, and at least 1 parasite all popped up. While they are something to pay attention to they are not the big concern right now. Like the Hansa Center in Kansas, the main goal is to restore the body's function as much as possible and then hopefully it will take care of most of those things it self. 

Now I have met with Dr. T for a about 4 hours and put another few hours into reading and researching and I still don't fully understand everything. You really need to a be a geneticist or super science geek to get some of these results so just know I am trying to paraphrase what we discovered and put in understandable terms as much as possible. (Translation=I'll probably get it wrong) Here goes nothing. Detox pathways is something a lot of Lyme people focus on. I've considered doing this testing (23 and me) but I just didn't feel like it was one of my issues. Everyone I knew that had detox issues or a genetic defect in these pathways couldn't tolerate antibiotics (like one dose would almost kill them) and would get no relief or even get worse from things like the sauna and Epsom salt baths. I did five or six antibiotics at one time and used the sauna or took baths all the time. Didn't seem to bother me to much. I was excited though that we would be looking at some of these issues during the testing and thought well at least I can check it off my list. Ya well my pathways had something else to say and they are actually quite a mess. There are actually pathways that deal with all sorts of things and I seem to have issues in all of them. Detox, toxin metabolism, inflammation, neurochemical, energy production, steroids hormones and immune pathways. This is all leading to serious histamine and inflammation problem causing almost my entire system to lose it's freaking mind. When it comes to organ issues my pancreas is showing as the biggest issue. Many things seem to test back to inflammation and pancreas. Dr. T asked is I have a family history of diabetes (which I do) and told me I am headed that direction if we don't get this figured out. Other organs showing issues are: heart, brain, 4 sinuses, both ears, lungs, ascending and descending colon, ovaries, joints, spleen, gallbladder, liver, kidneys and adrenals. I also have a problem with certain barriers in the body having "holes" which allow things to pass through them which should not happen. The most common one is leaky gut. Food particles and such from your gut can pass the barrier and end up in your blood stream when they shouldn't be. I have similar issue with both the lungs and brain. Speaking of the brain I have an issue with oxygen brain which can cause short term memory loss, word aphasia, and word slurring all which I have experienced but mostly the memory loss. My parasympathetic nervous system which deals with things like rest and digestion is decreased while my sympathetic nervous system which deals with our fight or flight response is increased. So basically don't have enough braking power for the amount of gas my body is being given. It is confused with trying to go and stop at the same time. I have issues with heavy metals and EMF's (cell phones, wi-fi,etc...my body actually craves emfs thinking it can use it for energy) and trace minerals.

To help start fixing these issues I have started on some new supplements and been given a new diet. I am also doing a therapy that has to do with polarity of the body and trying to put my body in resting state from all of the EMFs. I'll see the doctor again in a few weeks and may start with some adjustments and other therapies. Interestingly enough Dr. T sees our regular chiro, Dr.S (whom we love) and vice versa. There was some discussion about trying to get Dr. S to come to an appointment so they can see me together and help get some things figured out. 

As for the diet, I thought the Whole30 was tough. but I look forward to the day I can just do the that. I have confirmed after a 30 day round and a 41 day round of the Whole30 that sugar does affect my pain level. Unfortunately the cravings never went away and there is some speculation that the cravings may be related to my pancreas problems. I now have a combo of the Whole30, a low histamine diet, and a few other things my body doesn't like at the moment. In a nutshell I can't have:

alcohol, grains, dairy, added sugar in any form, legumes, chicken, pork, fish (unless it is extremely fresh), berries, bananas, melon, COFFEE, avocado, citrus, potatoes, tomatoes, peppers, eggplant, spinach, sweet potatoes, any nuts, baking soda/powder (whats the point of those without anything else) and any artificial anything (again no point with everything else I can't have). The doctor tried to be nice and tell me things I could have like bok choy, dandelion greens, chard, etc., which are all things I have never even bought let alone try to cook. So unless I win the lottery and can hire a chef to help me out I have a feeling this is going to be a rough go for a little bit. There is no time limit on this right now so it's this until...I lucked out and with one of my supplements I could have eggs and sulphur veggies (cabbage, broccoli) which were originally on the list of no's because I have a sulphur problem as well. I guess I will found out what I am really made of. 

Lots of praying going on though this process.  While I have typically prayed for help trusting and giving up control in the past I find myself praying more for wisdom now. I really like Dr. T and so much of what he said made sense to me. If my body is really having problems detoxing toxic substances or metabolising things so they can be used or eliminated then it makes sense to me that many of my medications and supplements in the past probably didn't do much since my body can't process them correctly. Having to trust that if this is where I am supposed to be then God will provide the finances, It continues to be a journey full of trials and tribulations, but also one full of faith and hope. While I left Dr. T's office feeling like a walking disaster there was beauty in the feeling of hope that I can still regain my health and the large part of my life that has been lost to being sick. I've got a little more than a year to get this figured out because I have big plans to start my 40's in much better place than I've spent my 30's!

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 go...my 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. 

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