The Final Frontier

This was an interesting episode. Thankfully the sadness has passed. My body and brain are so miswired. I read my last post, and I was indeed truly sad, but without reading that post, I really do not remember it being that bad. If you asked me today how I have been, my response would be, I feel amazing.

It did not get better after the sadness episode. After the sadness came the worst thing I could have possibly imagine. Some of the original symptoms from 15 months ago: I was freezing, my fingers turned back into ice sickles and none of my children wanted me to touch them, my heart would start racing for no reason, I would have unexplained waves of anxiety. Then there were all the emotions. I was mad because I have been through so much this past year and to be back here means everything I have done has not worked. I also convinced myself that this was never going to go away. (I think I was still not over the depression episode yet) This all lead to a call to my ND. With the big questions, REALLY are you kidding me? I am so done! I have done everything in my power get passed all of this yuckiness.

She is really the best thing ever for me… We chatted, okay I whined and she listened. Then with a smile in her voice, she explains to me that this is a good thing. What, are you serious? Then she asked if it was a bad as before. Of course I had to say no, last time I stayed in bed for the better part of 6 weeks and existed for another 6 weeks. I remember how awful it was. This really was a walk in the park in comparison. But the fact that I felt any of those symptoms threw me for a loop.

Now I bet you are curious how this is a good thing? It simply means that whatever the cause this batch of symptoms, whether the virus or the bacteria, was most likely exposed. The symptoms were less because I had lots of good guys in my system fighting it. That is where the battle is currently being fought, and I just felt some of the affects. I have to admit it, it all sounds a little crazy. But it is working. I really am sooooo much better than I was. I just want to be all better. I want to live in the fairy tale, and she lived healthily ever after! (Happiness is of my own making!)

My ND did leave me with a small warning, and I am going to put it here so I don’t forget it ;-)

I hope I can put it in the right words. This is a slow and meticulous process. The symptoms that hit me are what I call the original symptoms, but the probably are not. They just were bad enough to get my attention. Now we are heading into uncharted wilderness, the time before I took notice of what my body was telling me. Now the battles that my body fights are going to be ones that I may not have understood when I was having an off day that I was really ill. She explained that I did not get to where I landed overnight. It was a culmination of whatever this is getting the upper hand.

I don’t know what lies ahead, but I am much better then what I was. I am grateful and fell truly blessed to have come this far.

Merry Christmas

This is the song that never ends….

It just goes ON and ON my friends
Some people started singn’ it not knowing what is was
And they’ll continue singn’ it forever just because.

I am so done singing… I had a rough weekend. It actually cumulated in a train wreck. It had been building for a while. I just thought if I ignored it… well you know.

I have been so sad. I could not understand it, nor could not explain it and I could not pull myself out of it. It did not matter what I did. I tried all my proven tricks, nothing worked. I did lots of crying, I even just went to bed for a while just to try to figure it out. I was not successful until this morning. I noticed something was familiar. Then it hit me like a ton of lead bricks. It just changed forms. It is another infamous “Episode”. I knew that the ‘episodes’ affected my emotional well being, but I had so many physically symptoms that I did not pay attention to the emotional symptoms. Now to experience one with no physically symptoms to help dilute the emotional part was more then I could bear.

I used to blame it on something, usually something I ate that I should not have. Not this time. I have been so good. It resulted in a frantic call to my ND this morning. I was upset and I wanted answers. When is this ever going to end!

She had a great analogy. She said we were peeling and onion. We have to take it layer by layer. We were so focused on the physical symptoms that even though we were supporting my emotional system, it took the back burner to the more pressing symptoms. Now we need to focus on this layer.

I have become way too high maintenance. I hate being high maintenance.

Here is what I already know. 85% of serotonin is made in the gut. So I would think that healing my gut would make this all better. Wrong! Medications like Prozac and Paxil make the serotonin in your body more readily available. They do not create it. If your body does not have any serotonin then those medicines will not help you. What I have been taking are the building blocks of serotonin. I thought I was covered. Here is what I learned today. There are 15 different types of neurotransmitter, Serotonin being just one of them. Serotonin is the most common one they treat, but it may not be the one that I am deficient in. It landed me another lab test. This is hopefully it.

I have a goal. I really think it is one I can still achieve it. It is to get all my labs and any medical tests taken care of before January 1st and not touch my medical deductible next year. Is that too much to ask? ;-)

BTW this is one of my favoritest obnoxious songs ever!

The next installment

I had a nice visit with my ND this week. She was very happy with the progress we are making. So am I, well I was, well I am…well let’s just say the jury is still out. That seems to be the problem I am having. I am having a hard time, even with all the evidence and good health I am enjoying that this is really going to work. After so much money and doctors, it is really this easy? I could tell my ND was irritated when I explained this to her. I think because I have held my breath for every test and every new doctor for over a year, now I am here and I can’t believe it is true.

We made some supplement changes this week. She switched my gut regiment. I went from something that works on absorption and inflammation, to a new “magic box” that is going to stop the immune reaction in my gut. She did not want to get my hopes up, but for some of her patients this box is magic for them. I could use a little magic.

I am still on the enzyme. I finally reached full dose on Tuesday. I could tell the day I reached it. She warned me that I might feel flu like. YEP, I feel like I have the flu. I ache all over, my sinuses and throat hurt and I fall in bed at night, but I will take it. I am still upright and able to take care of myself and my family. She did however, failed to mention how long I could expect to feel this way. I am hoping for just a couple of days. I guess I can’t expect to be the war zone and not feel some of the affects of the battle.

The best part of all is I only have to take the magic box’s contents for the 6 week duration then I am done treating my gut. No more ordering more and more supplements. I also don’t have to see her again until February. YIPEE! She also said I could finish up some of the supplements and lessened the does on another. I am beginning to see the light at the end of the tunnel. (hoping to find a money tree is there too ;-) I just hope that there are no more detours.

Hide and Go Seek

It has been a busy couple of weeks, in a good way. My family and I have been super busy. We took an overnight trip out of town, celebrated a birthday, and celebrated Thanksgiving at my house. It has been fun. The best part about it all is that for the most part I have been able to keep up. I have been careful not to overdo it, but the fact that I have kept up pretty much without incident is a huge milestone. My struggle right now is mental. I want to celebrate and be excited, but I have thought I had beaten this so many times before only to be sorely disappointed. It is hard to explain even to myself who is trying really hard to be excited with each passing day. I wonder at what point I will truly believe that this is winding down.

The test results are in. Part of the difficulty is that my last appointment with the Naturopath was a phone visit. It is just not the same. I was not able to look at the results with her as we were discussing them. I just had to take her word for it.

Here is what a very bad explanation of the test and the results. Your cells react to foreign matter, whether it is bacteria, virus, or any other foreign matter that enter your blood stream. They react by sending out a response cell.. What this blood test did was expose my blood to lots of different possibilities of what could be floating around in my body including viruses and bacteria to see what their response was. If it reacts to the item, that mean the cells already recognizes it and knew how to fight it. That is not a good thing. They also have a scale of how aggressively they attack the foreign matter. If it sends on a full out attack, that it a sign that your cells are actively battling that thing. If you get a small reaction it means you cells recognize as a foreign object, but are not familiar with it so they don’t panic. That is how a healthy person’s blood would react.

Now for the result, this is even more confusing. The test showed that when exposed to certain strains of bacteria it sent out a full on attack (The family that Lyme disease falls under was one of the bacteria’s tested). It also showed that when it was exposed to certain viruses it sent on a full on attack. When it was exposed to the control, or basically something benign, it sent a full on attack.

Here is what the results mean to me. My body is actively fighting a virus, and bacteria. The fact that it reacted when it should not have is an indication that my body has been fighting these for a long time. For lack of a better explanation my blood cells have been waging the war for so long they treat everything as a threat. (I am still wondering what a long time means. Months, years?)

That leads me to my next science lesson. Biofilms. That is what viruses and bacteria hid in to save themselves from destruction. They hide and every once in a while one will come out and if conditions are right for them they will send a little message to their friends inviting them to come out and party with them. If the conditions are not right then they die and never get to tell their friends to come out so they sit and wait. How does this all relate. Apparently with all the hard work we have done to get my body heathy, my body is no longer a good environment for them to thrive. YIPEE. The bad thing is that because the test results it proves that whatever made me ill in the first place is still in there. My body just kills them before they can tell their friends. Basically it is a set up for failure. If conditions are not kept perfect, I will become ill again. So what is the plan? This is the part I don’t like…

We have to expose them. EEEWWWW!

That our course of action. I am taking an enzyme that is going to eat away the biofilm and expose them (not my first choice!) The hope is that I have enough support with supplements and my immune system to take care of them. We are doing it very slowly so that I don’t feel the effects of this war. So far it is not too bad. I have had a few symptoms here are there but I try not to freak out and I just try to imaging that they bad guys that have been exposed and are now being destroyed. I really do have a picture in my head of the battle. It is quite comical. Good thing no one can see it.

So what about the diagnosis of Lyme? There is still a good chance that is the bacterial part of the fight, but it really does not matter. (Besides the lab test is well out of my price range) What matters is that we take care of everything that is hiding under a biofilm and annihilate them. I guess we are playing a game of shoot to kill not questions asked! How cool is that, I am now a walking war game;-)

Back to Lyme?

I just can’t help myself. The other day I got a statement from the company that we are waiting for the last lab test from. It said the name of the test. I could not help myself I Googled it. It was scary, but with I put the word naturopath with the test name this is the article that came up. I know it is really long. I thought that because I had felt so much better when I changed my diet that I could rule out Lyme. The change of diet may have been the final straw that tipped the scale in my favor.

I had it all copied to word with comments and high light but it would not transfer over to the blog. Here is the original article unaltered if you are interested.

http://restormedicine.com/naturopathic-approaches-to-lyme-disease-treatment/

Finally a bad grade

The results from the IGA test are in. Here is how I did. The range they are looking for it between 51-215. My naturopath said she would likes to see it in the hundreds. I scored a whopping 15. What does it mean? Not quite sure. What little I know is it means that I have no mucus lining my gut and keeping large food particles from entering into my blood stream. Those particles are considered foreigners to my body, which triggers an immune reaction and bogs down my liver function. That would be why I feel so much better with the liver detox tea. For right now that is all I know. She is not going to change anything until the blood test results are in.

In the mean time, I seem to be plugging along. The only thing I really struggling with is starvation. I don't know how to describe it. I am always eating and always famished. It literally feels like my body is never satisfied with what I give it. I have been trying protein drinks to see if that will help. It has not. So I just keep eating and eating. It does not seem to change the scale.

What I really don't like or understand is the evolution of the whole thing. This is not part of the original symptoms, this is new. In my fairy tale once we addressed and took care of the original symptoms I should have been able to pick up my life where I left off and lived happily ever after.

That is not the case. I just keep reminding myself that I am so much better then when I could not get out of bed for days on in. If I could have seen that I was going to get this much better then I would have been happy. Now I am here and I want something more...The grass it always greener on the other side. I need to spend more time counting my blessings.

Wishful thinking

Just when I think diet will cure me, my body proves me wrong. I have been eaten just like I am supposed to. Not one piece of Halloween candy has touched my lips.

Yesterday I needed to be outside. I planted myself in the dirt around my raspberries. The crazy raspberries are producing fruit right now, but I resisted eating them. Although, 'I' ate till his heart was content. I just sat happily on the ground and weeded. I promised myself I would not over do it, one hour max. I had the older boys and my mom out working with me. I was in heaven. My hope was that if I did not bend over or get up and down I would be okay. I was euphoric sitting on the ground pulling weeds. (I know I am ill in other ways;-)) As soon as I got up I was dizzy. I felt like a little old lady sitting in the chair waiting to regain my composure. ARE YOU KIDDING ME! I was mad. I love to be out in the garden and just when I think I have figured out how to work the system, it does not work.

For about 5 days now have been feeling famished. At first it was welcome change. I soon realized it was not a good thing. I began to realize that no matter how much I ate the feeling would not go away. When I am famished I am also week and light headed. It does not seem to matter what I eat or how much I eat, I just can’t seem to appease it. My new theory is that my body is not absorbing what I am giving it. Maybe I am really feeding a parasite! Just a random thought. I have lots of those these daysJ I did pick up some protein powder just to see if it would help. It can’t hurt (I hope!)

I am suspicious that an episode is upon me. I had to drive to Auburn this morning for another blood draw. I explained to my naturopath about how I was feeling. The only thing that she could suggest at this point is that maybe the virus, or whatever you want to call it(parasite;-)), somehow got the upper hand. (I had to go off a few supplements to do the labs) That maybe my body is not really hunger, but the virus (parasite;-)) is and it is what is looking for nourishment. Would that be an invasion of the body snatches? Anyone seen the movie and can tell me what to do?

By the time I was home I was exhausted. I have not been tired like this in over a month. I was not home long before I passed out on the couch. I was sad that I was tired again. There are not words to express how nice it has been to not be tired day in and day out. That being said, I still only managed to sleep less than 10 minutes, then like magic I was awake, rested, and ready to keep going. I noticed a few other symptoms rearing their ugly heads on my drive home and a few more as I was lying down. I am disheartened that the diet did not magically cure me. I am sure it has helped tremendously. I am just really talented at convincing myself that the next thing I try will be the one that makes this all a distant memory.

Some side notes:

My insulin resistance test results were in. I am not insulin resistant. My blood sugar is a little low but still within acceptable range. That is another test that I have passed with flying colors. I still have an “A” average. WOHOOO!

I had to drive to Auburn, because the blood work I did last week at the office came with a second day delivery label instead of an overnight label. It will now be a little longer before we get the results.

The not so gracious tight rope walker

I feel broken. I wasn’t born broken. But somehow I have ended up feeling that way lately. When I tore my rotators cuff, my dad and I started joking that he should have bought the extended warranty on all my parts. Imagine if we all came with a guarantee against defective parts. We actually do…It is called the resurrections. Nice to know this part is not forever.


My diet seems to matter. Right now besides making sure I don’t miss any of my supplements, eating right seems to be the thing that can tip the scales as to how bad I can feel. Here is why I have such a hard time staying better. This week I have been eating perfectly. I have not fudged one bit. If I have not made it from scratch, I have scoured the label of ingredients. Nothing on the forbidden list has hit my lips. The problem with me feeling better is that I cannot remember how awful I felt. It is the craziest thing. I have kept several different health journals over this whole thing and the same thing keeps happening. When I feel bad I write just how bad I feel both physically and emotionally, so I will remember. On days I feel good I will look back at the days that I felt really bad. I will convince myself that it really was not that bad. Without fail I do it every time. I know I do it and I still can’t stop myself. This is going to be the hardest part of eating healthy. So I sabotage myself. Here is a perfect example. Friday I felt good. I had to cook some brunch casseroles. They had milk and cheese in them. Not too much and there were other ingredients. It smelled so good and I had waited too long to eat so I was hungry. They were warm and ready. I ate some. OH it was soooo good. I felt fine afterwards. I had lots of extra casserole so I fed it to the family for dinner. Of course I ate a little bit more with my dinner. It was a nice change of pace. I have a delay from mouth to results. It is about 24 hours. Sure enough, I began to start feeling yucky tonight. The pattern just keeps repeating. I know it keep repeating. I just can’t seem to stop it.

Right now food is not my friend. What do I cook? What can I eat? What actually sounds good to eat? Meanwhile my kids are munching on fruit, chips, bagels, sandwiches, breakfast cereal. I can sit for hours on the internet just looking at recipes. It would be easy if I was just avoiding gluten, or dairy. Adding fruit and sugar into the mix changes everything. If I do the strict Candida diet, then I am not eating yeast or vinegar either. I always get the response, then what is left? Tonight I agree, not much. I know that is not true. There really is lots, they are just not grab and go.

That is my pity party for the night. I don’t feel good and it feels self-inflicted although in the real world a little cheese and milk should not make me feel so awful. It never did before… Maybe someday it won’t bother me in this crazy way. I can only hope.

Naturopath visit

Today was the long awaited day. I had another appointment with the naturopath. Before I get into the details I will tell you the funny part. At the beginning of my appointment I watched her choosing her words very carefully. At one point she was trying to figure out how to explain something to me. I waited patiently and then she explained the problem. She said she didn’t know what she should tell me because she was worried that I would take the information home and research it to death. She said it like it was bad thing ;-)) I assured her I would be good. (I think she was more worried that I would call her with another million questions.)

I always learn something new when I visit her. Here is what I learned today. Bacteria have a very clever defense mechanism. They can create hideouts. Basically they create a shell around themselves that make it so our bodies do not recognize them as being the enemy. While they are in this state they are not actively doing anything. They are just laying in wait for the perfect conditions to return to work. That is why you can sometimes take antibiotics and the symptoms will go away and when you stop the problem comes back. It is not a resistance to medication, the bacteria recognized that something was going to kill them and they go into hiding. Okay I am not medically literate maybe that is the definition of a resistant bacterium. She thinks that right now I am doing so well because my body has enough anti-bacterial stuff in my system to keep them in this state, but if I were to stop the supplement they would come out of their shell and I would not be a happy camper. Apparently, those are the nasty bugger that she is now searching for.

On to the appointment…It was a quick visit and I am still trying to digest all the things we discussed. Nothing changed I still am on all the supplements, but she did do some lab work. She explained the labs to me, but I am not sure she was speaking English ;-) I will do my best to regurgitate them here. The results will hopefully point her in a better direction of what we are dealing with. Whether it is Lyme, Candida or something else all together.

I did forgo on the actually Lyme testing. It was expensive! Maybe if the other lab test does not give us any more information or my symptoms become unbearable again, I will reconsider.

Another test I got to take home to do is for Iga. It is something in the lining of the intestines that keeps the things that are supposed to be in my gut, in my gut, and out of my blood stream. She assured me that if they are missing from my system it is an easy fix. I could use an easy fix right now. Especially since I can’t use food (or searching the internet for hours) for an easy fix anymore. :-(

I did get the results for the hormone testing she ran last month. This was before the whole Lyme idea was introduced. The good thing is my estrogen levels are good. The bad news in my progesterone levels were super low, which apparently make me estrogen dominate. I don’t know what that entails, remember my hands tied. I did not do an Internet search. I can only assume that these are not ideal conditions. She gave me a hormone cream last month, already knowing I was imbalanced,(I thought everyone knew that!) but I did not like how I felt when I used it. Apparently, I was applying too much. How was I supposed to know? It says put a pea size amount on your arm. That is what I did. She said start with just enough that I barely see it and then work my way up to a pea size. I would prefer an exact measurement, thank you very much. Oh yeah, I am being forced to get over that trait ;-)) The other thing the results showed is that my insulin levels were too high. It indicated that I may have become insulin resistant. (I did do a quickie search on that one) The Internet said the same thing she did. It can be the result of long term bacterial infection. (It also said it usually causes weight gain, I am so happy the scale did not go the other way!) I always feel better when I can confirm what she tells me. That won me another blood test at the lab. I get to go fasting in the morning.

My feelings on the whole thing visit are mixed. I know she is very confident in what she does. She just does not always articulate the direction she is heading. Sometimes I feel like she is just running tests to see if she can find something. Other times it feels like this is a very well thought out and calculated process. What it really boils down to is that I am impatient, tired and I just want an answer. Well maybe not, I only want an answer if it is fixable. (Yesterday would be good ;-))

P.S...This morning after reading this blog entry, a friend of mine sent me a good link to the leaky gut and Iga. I was not surfing:-) but will read anything that hits my inbox. I thought I would share it is anyone is interested. It just confirms my naturopath is looking at all the options.
http://www.healthychristianliving.com/leaky_gut_syndrome.htm

Weight

This post has been mulling around in my head for days. I have just been trying to figure out how I want to word it.

This week I hit a milestone. I have lost 70 pounds. Part of me wants to throw a party. The other part of me is worried about when the weight will stop coming off. To put this in perspective, I now weigh 10 pound less then when I got married 17 years ago, and I weight within 5 pounds of what I weighted in junior high
.
Here is the history. When this first started over a year ago now, a big part of my diet was diet soda and sweets. They were what kept me going. One of the first things I gave up with the soda and items with sugar. What I did not know was that I was going to completely lose my appetite. Last year when this first hit I had a 6 week stint where I was barley functioning. I completely stopped eating. I can’t really describe it. I just didn’t want to eat anymore. Food became repulsive. I could hardly cook for my family. It did not take long before I hit rock. I finally got so I could force myself to drink an Ensure, but sometimes it took several hours to get it down. In those 6 weeks I dropped my first hunk of weight, 20 pounds. I gradually was able to eat again, but it is still forced most days. I don’t enjoy food anymore, but I do enjoy functioning so I eat.

Here is an interesting side note. I have seen lots of doctors and filled out lots of medically questioners this past year. All of them have had similar form of this question. Have you lost or gained 10 pounds recently? I would always check yes. Inevitably when we get to that point of the questionnaire the response is something like this. That is wonderful, keep up the good work. I have not had a doctor yet see this as a red flag. So my question to them is. WHY ASK?
The next 30 pounds were the scary part. I would get on the scale every morning. If got on the scale and I did not lose any weight I knew I would be able to function that day. If I gained a few pounds I would celebrate and convince myself I was finally healing and this was finally all over. Then there were the dreaded mornings when the scale would be 7 to 10 pounds lighter then the day before. I learned that that was my first clue that I was entering into the next 5 to 7 days of the unknown.. I would never know what the symptoms would be or how well I was going to be able to function. Life would just have to shut down and I would do damage control later. I now affectionately refer to those events as episodes. Those would be the days I would go from the scale to my knees and pray first that I was really not going to have another episode second to give me strength to endure whatever my body was about to put me through, and finally please guide me to someone who could possible figure out what is going on.

That brings me to another thought that I have spent time mulling over. The Lord does hear and answer our prayers. Just not the way we expect them. I cannot tell you how many prayers in my life have been about my weight. Just how many times I have pleaded for help to eat healthier and lose weight and to not be in bondage to food. For most of my life food has been a vice. I could have shot a video and been on The Biggest Loser. In one aspect my prayers have been answered. I am no longer in bondage to food, and I have finally lost weight. This is just not what I had in mind :D

That leaves the last 20 pounds. Those I can account for. One of the ways I keep my symptoms endurable is to watch what I eat. What I avoid is anything contains wheat, milk, or sugar in any form (including fruit) . I avoid wheat and milk because they are harder to digest and on seem to tax immune system. I already know my immune system is compromise so I am trying to be extra nice to it. If I eat sugar I can guarantee I am going to not feel well for the next several days. It could be I won’t be able to sleep, sometimes my heart with palpate, or I will be so tired I can’t function, I could have tingling in my feet and hands Just to name a few, I just never know. I do know it is not a blood sugar issue; The doctor have already done some testing and I played a lot with my dads glucose monitor. If I combine the three, let’s just say I have enough experience under my belt that no matter how good it tastes it is never worth it.

Once you remove all of those items from ones diet, there is just not much left. I can’t help but lose weight, but at least I know why I am losing it. I read that if you take all the refined foods from your diet that whole foods will taste better. That it true. Steamed beets and Brussels sprouts actually don’t taste so bad anymore.

Another possibility

I cannot tell you how much this blog has helped me to emotionally deal with all of this. I think it may prove more valuable than I anticipated. I got a package in the mail from one of my blog readers. In the package was a photocopy from a book and a little book called The Bible Cure for Candida and Yeast Infections. Weeks prior to the start of the blog and receiving this package, I had actually spent many hours on the internet reading about Candida. I am not going to give the big explanation on Candida. You can Google it. Candida is when the yeast in your body gets out of balance with all the good bacteria, and it wreaks havoc on your system. My Chiropractor was actually the first to suggest Candida. When I suggested the possibility to my Naturopath she down played it. Saying we were already addressing that possibility with the supplements I am currently taking and I did not need to do the extreme Candida diet. I am not discounting my Naturopath, she has mentioned that is a learning process, we learn something every time my body responds either favorable or adversely to a treatment or a food. She has also commented on several occasions that based on my bodies reactions that my body is more fragile then she thought.

I do know that I recently just went through antibiotics and ended up with thrush. The MD was shocked that I would have gotten thrush from the antibiotics. She threw 3 anti fungal prescriptions at it. I finally had to call the naturopaths. Her herb suggestions on top of the last prescriptions finally cleared it up.


After reading this book about Candida, I am looking at this as a real possibility. Luckily it can be cured buy a strict diet and a few supplements. My experience has been that I can get really sick just by putting the wrong thing in my mouth. It is usually not at the moment that I eat it, but within a day or two depending on what I ate. It can be debilitating. I was enlightened by reading this book. I could literally draw parallel lines between Lyme symptoms and Candida symptoms. They have so many of the same symptoms, including neurological problems. The deflating part is there is no definitive test for Candida. Most doctors don’t recognize it as a problem in the general population.(Just my luck!)

The good news is that I am basically all ready living the Candida diet. No sugar, yeast, milk. The book even has a section on needing to detox your liver.

Friday was a crazy day. I was gone all day. I knew I needed my energy and strength so I started my day with an Ensure. I should have read the label, 25g of sugar (OOPS) I had the kids with me shopping at waited too long to eat. We stopped at Sam’s club knowing I could grab a salad. They were out, but I had to eat, so I ate a hot dog. What was I thinking? I was feeling great, up until I made those fatal mistakes. Well they were not fatal. I am still alive, but I had felt amazing for 3 days in a row and by that night I was back to enduring symptoms. I know it will take a couple of days for this mistake to clear out of my system, especially if it is Candida and I did just give them a major feast. Live and learn, but at least now I am learning.

I still have another week before I see my Naturopath again, but that should give me time to experiment. I am going to try to eat perfectly this week. I figure if my symptoms diminish again then I am going to wait on all the Lyme testing and treatment. (The tests are expensive and usually inconclusive) If it really is Lyme it should not go away just because of my diet. If I eat perfectly and I get worse then I will look more into the possibility of Lyme. I have dealt with it this for so long what is another month or two.

I am giving up hope for anything in my health ever being black and white!

The Skeptic

Cut and Dry, Black and White. That is just the way I like it. That is the only way I like it. I can already tell I am not going to like this, but I am sure some people are really going to enjoy watching me getting over this issue :-D

Not everything that my naturopath has giving me has made a noticeable difference. I am usually skeptical about what she wants me to do next. Let’s just say I am not completely converted yet. That being said I have had the same problem with regular MD’s. Some of the medications they have put me on have not been effective. But at least the medications come with warning labels, so I at least know that the ultimate adverse reaction might be death LOL!

My naturopath did not want to start treatment or do the blood tests until I was over the latest bug to hit our home. That is makes me wonder if we will ever start ;-) She did ask me to do some things to get my body ready for treatment.

I need to back up since most of you are just tuning in to all the steps I have taken getting to this point. I have had the privilege over the past year of taking a course in hard knock when it comes to major lifestyle modifications. For the better part of a year I have had to learn to not eat dairy, gluten, and sugar (all forms, including fruit). It sounds extreme and trust me it is, but if I fudge at all I pay for it in the way feel. There is a whole long explanation as to why that is, but I will save that for a different post.

So here are my newest instructions. Liver Detox. The first thing I think, probably like most of you, is this for real! (Always the skeptic) Here are the instructions she gave me which were pretty simple. Go to the health food store and get a tea and says it is for Live Detox. Drink 3 glasses a day until my appointment in two weeks. Also make sure my diet includes lots of root vegetables, but not white potatoes. (So much for In-and-Out fries :-( )

So first I have the battle within about drinking tea. It’s a black and white thing. Then I have to learn how to eat root veggies. I have barely graduated beyond the 4 veggies I always buy in the store celery, carrots, broccoli, and salad. I was just barley exploring the world of leafy dark greens and now I have to figure out root veggies.

I decided to ba a good girl and did what I was told. She said I would feel better. Would you believe…SHE WAS RIGHT! These last couple of days I have had more energy. I still get tired, but I don’t have to stop and rest. I am so excited….I am also a skeptic…I have had good days before. The real test will be if it lasts more than a few days. I can only hope.

The Big Kahuna

Last night I fell into bed exhausted. I knew I was in trouble when I had laid there for a half an hour wide awake. One of the things that a friend taught me and I have put into practice is to just lie there, even if I can’t sleep. My body is still getting rest. So I laid there. Then it happened. I had just drifted off to sleep and it started. The tingling sensation that starts somewhere in the core of my chest and runs out to my finger tips in waves followed by my heart beating so hard I think it is going to pop out of my chest. It used to scare me. For lack of a better description is feels like the fight or flight feeling you get when you see something bad happen, like one of you children run out in front of a an oncoming car. The Dr’s first treated it as anxiety. They loaded me with all sorts of depression and anti anxiety medications. None of them worked. The psychiatrist was the first specialist to tell me that he had no idea what was going on and no explanation as to why I was not responding to the medications.

When the first wave hit last night, at first I was upset. I started down the path of the GRRRRs, why is it back. What triggered this symptom again? Then I reasoned that this train of thought is not going to make it any better. I cannot answer the question, so I imagined I was on a surf board riding a giant wave. Now this symptom has a name. The Big Kahuna. For the next 3 hours every time I would drift off to sleep my body would wake me up and I would get to ride a big Kahuna. Then while I was waiting to fall back asleep I thought of all the witty ways I could blog about it.

One of the drawbacks to the Big Kahunas is they are like power naps. They wake me up and my body thinks it has slept. I wake up from Big Kahunas totally rested. It takes a ton of will power to just lay there and wait to fall asleep again

Prologue

I recently went to Time Out for Women where I heard the most touching story. The speaker told about how she got married later in life. She was 43 and having her second child. Like all expecting mothers, she thought about all the things that could go wrong with the baby. I don’t know a mother who does not have the same thought. Finally she delivered a beautiful baby boy. The Doctors initially announced that he was perfect but she was still worried. About a month later the Doctors told her they were concerned and asked to run some tests on the baby. To her worst fear, the tests came up positive. She learned that her baby would never have a ‘normal’ life and it would face many challenges. She said all of a sudden the worst thing ever was happening to her. She related that she left the doctor’s office with tears in her eyes. She went to the car and strapped the baby into the car seat then sat and looked at that precious baby. She realized that nothing so beautiful could possibly be the worst thing ever

The worst thing ever may be happening to me…My children are fine but I have spent the last year chasing what has become for me the worst thing ever. I have bounced from specialist to specialist and from test to test. The results according to all who have examined me and read my test results are that I am healthy – the test results are almost always within normal parameters. So why do I feel so awful? Why are there days I can hardly focus to cook, or days I am so tired I cannot keep up with the house cleaning? Why do I have unexplained pain that lasts for months? Why could I not sleep for months? Along the way there are days I feel almost normal again. I never know what the day is going to bring until I get out of bed. Most days I will feel just fine and then exhaustion hits like a ton of bricks. I could go on and on. Here are the things I do know: I know that I am 65 pounds (and counting) lighter that I was a year ago. I know that whatever it is, it comes in episodes, but the episodes are not predictable and I never exactly know what the group of symptoms will be.

Two weeks ago I went to the ER because half of my face going numb. The ER ruled out the a few things like a stroke and suggested maybe I had early Bells Palsy. I was sent home without any treatment.

Whatever I am suffering with, it is now in my nervous system. The frustrating truth is that nobody seems to see the big picture about what is going on. This is affecting my entire body.I am not going to spend hours rehashing all of the things that I have been tested for. I have just spent a lot of time praying that Heavenly Father would lead me to someone who would help me. After bouncing from doctor to doctor, I eventually turned to alternative medicine. I first did acupuncture and it helped for a while. But after several months even he became baffled as to why my body was not responding to the normal treatment. I tried more doctors and endured more tests, but to no avail. I finally started seeing a naturopath. I would have never chosen this route had I not been so frustrated with doctors saying they can’t find the cause of my symptoms.

They say desperate times call for desperate measures. Deciding to go to a naturopath felt like a pretty desperate measure at the time. Luckily for me I have a good friend who had amazing results with this naturopath. That made my choice a little easier. The naturopath has been working with me for several months now. Although I am much improved, I am still having episodes that take me out of commission - like the one that landed me in the ER I mentioned above.

This past Monday I called the naturopath in utter frustration and she gave me some great news. She told me that she attended a conference recently and she now thinks she knows what we are dealing with! She explained to me that my symptoms coincide with Chronic Lyme Disease. I knew Lyme disease was a tick bore disease but I knew nothing about Chronic Lyme Disease. She reassured me that this disease is treatable. People she knows have made a full recovery.

I had no idea the can of worms it was going to open in my life. As of today, I have mixed feelings about Chronic Lyme Disease. I started to research what Chronic Lyme disease was. I found that not very many in the medical community recognize the chronic form of Lyme disease. I learned that Lyme disease was only discovered in 1982 and the chronic form wasn’t identified until later. That is not all that long ago. I learned there are no conclusive tests for Chronic Lyme Disease. With a lack of reliable testing it becomes a clinical diagnosis. The doctor typically has to make the diagnosis based on symptoms. There is a big rift between members of the medical community as well as government organizations like the Center for Disease Control and Center for Infectious Diseases. Most insurance companies do not recognize the diagnosis therefore they will not cover what few treatments that are out there. I would much prefer to have something commonly accepted, easily treated. Black and white, cut and dry is not what I have.

I started looking for doctors that knew something, anything about Lyme Disease. I stumbled upon a retired MD only about 30 minutes from my home that specialized in Chronic Lyme Disease. He is not actively treating patients anymore because of his age but he stays up to date with the issues. The sweet gentlemen spent over an hour of the phone with me. He listened to my medical challenges and experiences over the past few years. When all was said and done he agreed with what the neuropath had suggested. There is a very real possibility that I may be dealing with Chronic Lyme disease. He then started filling my head with a lot of information. I am sure I missed most of it. He was so kind and concerned that he took time to call a doctor he knew who treated Lyme to see if he was accepting new patients. Unfortunately, the other doctor was not taking new patients.

In my research I found there is more than one way to treat this and the treatment needs to be customized to the patient. I really thought that I wanted a regular MD to confirm the diagnosis. So far this the closest I have gotten to putting a name to whatever is happening, I am not going to give too many gory details as to how and why I came to my decision, but for now my naturopath has been my greatest ally and most informative. She is ultimately the most confident that we are heading in the right directions and we will run some of the tests and see what results we get.S

That leads me to my new blog. I called her today all FREAKED out about all the things I have read and all the things the people on the Lyme group were telling me. She ordered me off the internet. I think as much for her sanity as for my own sanity;-)). The problem is I cannot just sit around. Someone has given me hope. Hope that I don’t have to continue grabbing at straws. I have an overwhelming need to do something proactive. This is my new project, to blog my journey. Some of you may enjoy following this journey, and some of you this may be the only thing you ever read, but for me it will be therapeutic.

Ultimately nothing has changed, I don’t have an answer, but I finally have a direction. That is more than any doctor has been able to offer in over a year.I decided not to make the blog private, mainly because I don’t like to sign into other people’s blog. For me to feel comfortable staying public you won’t see any locations or doctor’s name on this blog, but those who know me can always ask.

So I say…let the journey begin. I am looking forward to someday when I can write on the final page…And she lived happily ever after. But until then you are welcome to follow me as I fill the pages in-between.