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alee_grrl"When was the last time you were healthy?"
This was one of the first questions my new doctor (a specialist in chronic pain and fatigue) asked me. The sad thing was I couldn't remember the last time I was healthy. Grade school was really the last time I felt healthy that I can remember. My mom would take us to the doctor for any sniffle, even if there was not a problem. So I thought I was a sickly child, but I was active in grade school and had energy. The symptoms that are most familiar started in Junior High. Junior high was hell on my health and I was sick a lot, and things just slid down from there. My emotional health and life in general got better after college, but my physical health never really recovered and worsened in increments over the years.
My new doctor asked me a lot of questions about my symptoms and about environmental factors. Had I ever been exposed to deer ticks for instance? I spent a lot of time in the country in various parts of the United States, and had spent a lot of time around dogs and other animals. I know for a fact I'd had a tick bite or two, but couldn't tell you if they were deer ticks or not. I don't recall having the specific rash that indicates Lyme Disease, but there is a lot about my childhood that I don't recall. After we discussed all of these factors and I described my current symptoms as best I could, he went over my medical records.
At the end of the appointment he discussed with me what he thought the main issues might be, and what blood tests he wanted to run. He explained that he thought the main root problems were most likely an overabundance of yeast in my system and Lyme or Lyme-like infection. However he wanted to rule out a number of other possibilities too. He gave me an info sheet on low-yeast diets and suggested that I try it. We scheduled a follow-up appointment and I went off to get the blood work done. I didn't start the diet right away as I was terrified I wouldn't be able to do it (it is very restrictive-no sugar or sugar substitutes (including fruit), and as few carbs as possible; meat, eggs, and vegetables-particularly leafy green veggies-are okay; dairy is okay so long as it doesn't upset my stomach). I did start cutting back on my sugar intake and noticed that when I had sugar my energy levels spiraled out of control and I felt like crap. So about four days before my next appointment I decided I'd give this diet a try.
I went through my house and bagged up all the unopened food items that had ingredients on the avoid list. I took the bag to the local food shelf. I gave most of the opened and refrigerated stuff with ingredients on the avoid list to a friend. What she didn't want I threw out. This was difficult for me as I had to waste food. However a friend of mine had put it in a very succinct way: which was higher the health cost of eating what I knew to be poison to my body or the cost of wasted food. Thankfully there was very little left that I had to throw out. I did this radical pantry cleaning because I knew if I had the food around I would be more tempted to eat it. So for the next week I had hard boiled eggs for breakfast (quick and easy breakfast if you've made a bunch ahead of time), salads for lunch and meat and veggies for dinner.
During this first week I think the thing I missed the most was cereal and milk (at this time I wasn't sure if dairy was allowed as it is not mentioned on the list). I was absolutely delighted when I found out that Food for Life makes a sprouted grain cereal. Sprouted grain products are on the approved to eat list so long as there is no added yeast. The company's flatbread, tortillas and cereals (save for the cinnamon raisin which I can't have because of the raisins) are all on the approved to eat list. Let me tell you, this discovery saved my sanity. Cereal and milk has not only been my staple breakfast for pretty much my entire life, it has also been one of my traditional snacks. It took me a while to get used to this new cereal; it is very similar in texture to Grape Nuts.
In the four days before my next appointment I noticed that my energy levels were more even, which was a big plus. At the next appointment, Dr. C explained the results of my blood tests and what he thought the next phase of treatment should be. My Lyme disease results were indeterminate, and Dr. C carefully explained both the minority and majority medical views on Lyme. The Western Blot Lyme test showed several bands of Lyme antibodies but not enough for there to be a conclusive positive. The majority would likely conclude that I did not have Lyme disease based on the results. However the minority would consider which bands were present and how common those bands of antibodies are in the normal population. Based on the minority analysis it is likely that I have Lyme or a similar infection. Dr. C is fairly certain that this is the case. He gave me pamphlets that go over both the majority and minority views and a symptoms checklist to fill out for my next appointment.
We then discussed treatment options. For the overabundance of yeast he put me on Nystatin which is an antifungal and would kill off the yeast in my body. Additionally I am to keep to the low-yeast diet for the duration of treatment. If we determine that Lyme or Lyme-like infection (and he often uses "we" when discussing treatment, which makes me feel like I have a say in things), then treatment will consist of long term antibiotics. Since antibiotics feed yeast, I would need to stay on the Nystatin and low-yeast diet. He was upfront with the fact that treatment could take years. It is a scary prospect and yet a hopeful one. These two problems are treatable, and if they are the root problems there is a good chance that I could be healthy (or healthier than I can ever recall) at some point in the future.
If we decide that Lyme is not the root problem then treatment will focus on adjusting my antidepressants and finding other ways to help maintain a relatively healthy life despite the fibromyalgia. Either way I am hopeful that Dr. C will help me find a way to manage my symptoms so that I can live my life rather than sleep through it. Dr. C is also aware that I am a law student and has been very candid about the specific difficulties I will face during treatment (finding the time to eat right, pacing myself, and getting plenty of sleep). He was also very upfront about the fact that I will likely feel worse before I feel better.
After that appointment I started the Nystatin (a low dose until I finished my summer class and then an increased dose). Yeasty beasties are incredibly stubborn and desperate microorganisms. The symptoms they cause get worse as they die off, so I have not felt great the past few weeks. However, I have felt different. My energy levels are much more even, and I'm not hurting as much. I'm feeling sort of bleh, lethargic, fuzzy headed and grumpy, with itchy scalp and itchy skin areas were the yeast was happy. I had no idea that yeast could be a scalp issue and cause hair loss, but it can. I've been using tea tree oil shampoo and conditioner to try to keep the scalp itch under control. Talcum powder helps with other itchy areas.
These symptoms lasted about a week when I started the Nystatin. I upped the dose weekend before last, and I'm hoping the symptoms will start tapering off soon. When the symptoms start tapering off I find myself feeling pretty good. I know that I'll go through a similar cycle if I get put on antibiotics (with other fun side-effects). I'm very glad that I chose to take a lighter course load this fall. If I have to, I will ask for medical accommodating and graduate in four years rather than three.
I have been on the low-yeast diet for three weeks now and haven't cheated. I've been dreaming of sweets the past few nights, but am able to resist temptation during the day. I try to picture a bottle of bleach over the sweet thing that I'm craving. I know that bleach is poison and would not think of ingesting it, and at least for now sugars and carbs are just as poisonous to me. I'm proud of myself for having made it three weeks.
As a reward and incentive to get more exercise (particularly this winter) I splurged and bought tv and wii fit (and a rolling stand to put them on). I didn't think my apartment was big enough to fit a tv, but I spent last Monday cleaning and rearranging furniture and managed to make enough room for a small tv and tv stand. I'm thankful for back to school sales. Both the wii console and the tv were on sale. So I managed to stay within my budget.
I am hopeful that things will continue to change and that somewhere on the other side of different things will get better.
This was one of the first questions my new doctor (a specialist in chronic pain and fatigue) asked me. The sad thing was I couldn't remember the last time I was healthy. Grade school was really the last time I felt healthy that I can remember. My mom would take us to the doctor for any sniffle, even if there was not a problem. So I thought I was a sickly child, but I was active in grade school and had energy. The symptoms that are most familiar started in Junior High. Junior high was hell on my health and I was sick a lot, and things just slid down from there. My emotional health and life in general got better after college, but my physical health never really recovered and worsened in increments over the years.
My new doctor asked me a lot of questions about my symptoms and about environmental factors. Had I ever been exposed to deer ticks for instance? I spent a lot of time in the country in various parts of the United States, and had spent a lot of time around dogs and other animals. I know for a fact I'd had a tick bite or two, but couldn't tell you if they were deer ticks or not. I don't recall having the specific rash that indicates Lyme Disease, but there is a lot about my childhood that I don't recall. After we discussed all of these factors and I described my current symptoms as best I could, he went over my medical records.
At the end of the appointment he discussed with me what he thought the main issues might be, and what blood tests he wanted to run. He explained that he thought the main root problems were most likely an overabundance of yeast in my system and Lyme or Lyme-like infection. However he wanted to rule out a number of other possibilities too. He gave me an info sheet on low-yeast diets and suggested that I try it. We scheduled a follow-up appointment and I went off to get the blood work done. I didn't start the diet right away as I was terrified I wouldn't be able to do it (it is very restrictive-no sugar or sugar substitutes (including fruit), and as few carbs as possible; meat, eggs, and vegetables-particularly leafy green veggies-are okay; dairy is okay so long as it doesn't upset my stomach). I did start cutting back on my sugar intake and noticed that when I had sugar my energy levels spiraled out of control and I felt like crap. So about four days before my next appointment I decided I'd give this diet a try.
I went through my house and bagged up all the unopened food items that had ingredients on the avoid list. I took the bag to the local food shelf. I gave most of the opened and refrigerated stuff with ingredients on the avoid list to a friend. What she didn't want I threw out. This was difficult for me as I had to waste food. However a friend of mine had put it in a very succinct way: which was higher the health cost of eating what I knew to be poison to my body or the cost of wasted food. Thankfully there was very little left that I had to throw out. I did this radical pantry cleaning because I knew if I had the food around I would be more tempted to eat it. So for the next week I had hard boiled eggs for breakfast (quick and easy breakfast if you've made a bunch ahead of time), salads for lunch and meat and veggies for dinner.
During this first week I think the thing I missed the most was cereal and milk (at this time I wasn't sure if dairy was allowed as it is not mentioned on the list). I was absolutely delighted when I found out that Food for Life makes a sprouted grain cereal. Sprouted grain products are on the approved to eat list so long as there is no added yeast. The company's flatbread, tortillas and cereals (save for the cinnamon raisin which I can't have because of the raisins) are all on the approved to eat list. Let me tell you, this discovery saved my sanity. Cereal and milk has not only been my staple breakfast for pretty much my entire life, it has also been one of my traditional snacks. It took me a while to get used to this new cereal; it is very similar in texture to Grape Nuts.
In the four days before my next appointment I noticed that my energy levels were more even, which was a big plus. At the next appointment, Dr. C explained the results of my blood tests and what he thought the next phase of treatment should be. My Lyme disease results were indeterminate, and Dr. C carefully explained both the minority and majority medical views on Lyme. The Western Blot Lyme test showed several bands of Lyme antibodies but not enough for there to be a conclusive positive. The majority would likely conclude that I did not have Lyme disease based on the results. However the minority would consider which bands were present and how common those bands of antibodies are in the normal population. Based on the minority analysis it is likely that I have Lyme or a similar infection. Dr. C is fairly certain that this is the case. He gave me pamphlets that go over both the majority and minority views and a symptoms checklist to fill out for my next appointment.
We then discussed treatment options. For the overabundance of yeast he put me on Nystatin which is an antifungal and would kill off the yeast in my body. Additionally I am to keep to the low-yeast diet for the duration of treatment. If we determine that Lyme or Lyme-like infection (and he often uses "we" when discussing treatment, which makes me feel like I have a say in things), then treatment will consist of long term antibiotics. Since antibiotics feed yeast, I would need to stay on the Nystatin and low-yeast diet. He was upfront with the fact that treatment could take years. It is a scary prospect and yet a hopeful one. These two problems are treatable, and if they are the root problems there is a good chance that I could be healthy (or healthier than I can ever recall) at some point in the future.
If we decide that Lyme is not the root problem then treatment will focus on adjusting my antidepressants and finding other ways to help maintain a relatively healthy life despite the fibromyalgia. Either way I am hopeful that Dr. C will help me find a way to manage my symptoms so that I can live my life rather than sleep through it. Dr. C is also aware that I am a law student and has been very candid about the specific difficulties I will face during treatment (finding the time to eat right, pacing myself, and getting plenty of sleep). He was also very upfront about the fact that I will likely feel worse before I feel better.
After that appointment I started the Nystatin (a low dose until I finished my summer class and then an increased dose). Yeasty beasties are incredibly stubborn and desperate microorganisms. The symptoms they cause get worse as they die off, so I have not felt great the past few weeks. However, I have felt different. My energy levels are much more even, and I'm not hurting as much. I'm feeling sort of bleh, lethargic, fuzzy headed and grumpy, with itchy scalp and itchy skin areas were the yeast was happy. I had no idea that yeast could be a scalp issue and cause hair loss, but it can. I've been using tea tree oil shampoo and conditioner to try to keep the scalp itch under control. Talcum powder helps with other itchy areas.
These symptoms lasted about a week when I started the Nystatin. I upped the dose weekend before last, and I'm hoping the symptoms will start tapering off soon. When the symptoms start tapering off I find myself feeling pretty good. I know that I'll go through a similar cycle if I get put on antibiotics (with other fun side-effects). I'm very glad that I chose to take a lighter course load this fall. If I have to, I will ask for medical accommodating and graduate in four years rather than three.
I have been on the low-yeast diet for three weeks now and haven't cheated. I've been dreaming of sweets the past few nights, but am able to resist temptation during the day. I try to picture a bottle of bleach over the sweet thing that I'm craving. I know that bleach is poison and would not think of ingesting it, and at least for now sugars and carbs are just as poisonous to me. I'm proud of myself for having made it three weeks.
As a reward and incentive to get more exercise (particularly this winter) I splurged and bought tv and wii fit (and a rolling stand to put them on). I didn't think my apartment was big enough to fit a tv, but I spent last Monday cleaning and rearranging furniture and managed to make enough room for a small tv and tv stand. I'm thankful for back to school sales. Both the wii console and the tv were on sale. So I managed to stay within my budget.
I am hopeful that things will continue to change and that somewhere on the other side of different things will get better.
no subject
Date: 2011-08-15 07:03 pm (UTC)no subject
Date: 2011-08-15 07:13 pm (UTC)I hope that you and your kitty are doing well.
no subject
Date: 2011-08-15 09:25 pm (UTC)~shakes pom poms~
no subject
Date: 2011-08-15 09:41 pm (UTC)no subject
Date: 2011-08-15 11:32 pm (UTC)