Sunday, May 24, 2015

My Health Recovery Journey

Before you begin, take this for what it is. I am simply sharing from a personal experience, the things I learned so far from all the people I have worked with, books I have read, and the ups and downs of dealing with chronic illness. I am not a medical professional nor do I claim to be. Now that that's out of the way, Let's begin :).

Years ago, I was desperately searching online for some answers to my health problems. After some time, I found a woman's blog. She described in detail almost EXACTLY all I was suffering at the time and what she did to get through it. It gave me a tremendous amount of comfort, just knowing there was someone else in the world going through exactly the same thing as I was. It is my hope that this will do the same thing for someone else.

I had allergies, eczema, asthma, and GI issues interspersed throughout my childhood. I was dependent on benadryl and Pepto Bismol. The allergies were pretty typical though, animal hair and dander, grass, trees, mold, and mildew were the biggies. It was inconvenient, at most, a pain sometimes, but did not control my life. Hay fever, eczema, and asthma really only acted up when I came in contact with the things I was allergic to, so as long as I avoided these things I was ok. Extreme heat in summer would worsen my eczema, and allergy seasons were difficult, but temporary.

Even though in the years of all my pregnancies (6), I had noticed an increase in my symptoms, after the birth of my 5th child, a time bomb went off in my body. It began with a yeast infection I could not get rid of with ordinary means. My doctor prescribed an anti-fungal medication. Then immediately following, I had a UTI (urinary tract infection) that became so serious I had very high fever and my doctor recommended going to the emergency room. I was given a strong antibiotic and told to take this for 2 weeks. Little did I know I was changing the course of my health dramatically.

After recovering from the UTI, my eczema became increasingly worse, to the point of not being able to function. A distinct memory my husband and I have, is going to the zoo with my brother and his wife and son. When I got in the car, my reaction was so extreme I was shaking uncontrollably and couldn't stop the intense itching for about 40 minutes. I was miserable all the time. My hands were in such an awful state I had to wear gloves during the day just for comfort.

(At Disney with my kids. "The glove stage")

Doctor #1

I went to a dermatologist. I have been to dermatologists all my life. Most of the time they have prescribed a steroid cream. Unassumingly, I always used them. A female dermatologist I went to actually looked me straight in the eye and said "You know steroid creams are bad for you. After you use it for a while you need to taper off." This is the first time a dermatologist had said this. She then prescribed one for me, reluctantly, it seemed. I had noticed that when I used them, they worked for a while and then it would actually get worse. The next dermatologist gave me a new cream, assuring me it was not a steroid cream. I used it for a week, the itching got worse, not better, and I had to stop.

Doctor #2

Next I tried an allergist. We did all the possible food allergy tests and they came out negative. The doctor and I were both perplexed. He left the room for a while, came back, and said "I honestly don't know. This is a shot in the dark, but maybe you have a nickel sensitivity. Nickel can be found in all grains, potatoes, legumes (this includes soy, coffee, and chocolate), fish, and nuts. Avoid these for 2 weeks and you will know." "What in the heck will I eat?" I thought to myself. But I was desperate for relief. I started researching, and began eating weird things like Quinoa and Tapioca flour. But all wheat, corn, rice, oats, and sugar were out. I began to discover vegetables for the first time. I mean, I had always eaten vegetables because I knew they were good for me, but if I had a choice between a cookie and some carrots, I would go for the cookie hands down. Now, vegetables were becoming a staple in my diet. Thanks to this honest doctor's "shot in the dark", the new nickel-free diet did bring me a little improvement, I think mostly because this was the first time I had started eliminating any food in my diet. I may or may not have had a nickel sensitivity, but I found out later it was much more. At any rate, I was eliminating a lot of higher carb foods, including sugar, and eating a lot more "whole foods". A good step in the right direction.

But something still wasn't right. I was still having severe allergic reactions, often to unexpected things. And I began to develop other symptoms. I was freezing all the time. Even in hot summer months.The only thing that gave me comfort was scalding hot baths, or sitting outside in 90-100 degree weather. I was losing my hair. I had gotten staph infections during stressful times as a child, but now it was at least once a month. I began to have chronic diarrhea. I could no longer tolerate any fabric but cotton. I had to start filtering all my water, including bath water. My life was a series of trying my best to avoid/control serious, dehabilitating reactions. Often these reactions would last an hour, sometimes all through out a day, and then I would barely have time to recover before another would occur. I was in tears often, and in so much pain I was limping around the house. I was also waking up throughout the night to react. I was completely exhausted all the time. Doing ordinary things like, getting dressed, hugging my children, and caring for them became very difficult for me to do. 

Doctor Number 3 and 4

I decided to go to a gastroenterologist to get tested for a gluten-sensitivity, at the suggestion of my allergist. He said, however, that since I had already eliminated gluten with no improvement, there was no need to do an endoscopy. Then I went to a primary care doctor, a friend of the family. She ordered a whole series of tests on me, very thorough. After half a day of blood pricking and such, we were done and I went home to wait for results. She called me 3 days later, and with a very kind, compassionate voice said, "The good news is, you are not anemic. The bad news is... I'm so sorry. I don't know what's wrong with you."


So, as we were desperate and had tried all the doctors we knew of and still had no real answers, my husband and I decided I would go to a friend who was a homeopath. This is someone who helps people to heal by natural means, herbs, supplements, and diet. She sat down with me and started asking some questions. "Can you remember a time when you were sick as a child and had to take an antibiotic?" and "About when did your eczema begin?" As I thought her questions over, I realized that my eczema started right about the time I began taking penicillin as a child when I was hospitalized for pneumonia. I also remembered that, I was given Keflex, an antibiotic, for frequent staph infections. After doing her own analysis of my health, she began to piece together some of the puzzle, though not all yet.

Here is my somewhat simplified version of her explanation. Over time, the antibiotics had stripped my body of the flora, or good bacteria. This good bacteria is necessary in our system for many reasons one of which is to create a balance with the yeast that reside there. Both yeast and healthy bacteria are good and necessary things for our body. The flora also create a protective layer in our "gut" or intestinal tract. "Leaky Gut Syndrome" is when that protective layer is compromised, and openings allow what your body would consider foreign objects in. Your immune system responds with inflammation of different types. You can read more in depth about "Leaky Gut Syndrome" here. In this whole process one negative effect that can occur is candida, which can act more like parasites than the friendly fellows they are supposed to be when you have plenty of healthy bacteria keeping them in check.

She also believed that frequent use of steroids (creams and some injections) had taxed my adrenals. Adrenal Fatigue is when your adrenals which normally produce hormones to help you deal with stress, don't do their job. Steroids try to mimic those hormones and in doing so suppress the adrenals. The person I was working with said the damage would take up to 2 years to repair. What she did not know is that my health problems were more complicated than just leaky gut, candida, adrenal fatigue and a compromised immune system. But it was a starting place. She gave me a foundation to jumpstart from. She built up my immune system and began the repair on my intestinal tract with supplements and natural herbs and put me on a restrictive diet to create an unpleasant environment for the candida I had developed. She also impressed upon me the importance of organic foods because of the hormones and pesticides in regular foods. I remember the first time I was cooking with grass-fed beef versus regular. I was amazed, because for the first time while touching beef, my hands were not burning (I was not allergic to beef). The more foods we switched to organic, the more my health improved. After 6-7 months on her regimen, I began to see improvement. The diarrhea stopped, it was a daily occurrence every morning for several hours. My skin looked much better. I was still having reactions, but not daily and not as severe. Most importantly, I dared to hope.

When she felt my body was strong enough to handle it, she put me on my first cleanse, a parasite cleanse, meant to focus on the yeast, but milder than the yeast cleanse. After going through 3 boxes of this, I began to see more changes. I could take a bath without filtering the water, without reacting, the nightly routine of itching at 3:00 a.m. for up to an hour, stopped temporarily, and the itching died down overall. I was able to wear some earrings and necklaces again. I was unable to wear any jewelry without breaking out in a rash until this point.

(Cute baby break! just kidding. Actually this was close to right after the parasite cleanse. I got a break here, a brief recovery that gave me the strength to keep going.)

Because of the obvious success of the parasite cleanse, she decided to put me on a more intense yeast cleanse. I began to experience detox symptoms with this cleanse. These "yeast die-off" symptoms included fever, nausea, itching, flu symptoms, headaches and fatigue, all of which I had. I spent a total of 40 days, cleansing. At first, the side effects didn't seem so bad. But towards the end, I started to see all my eczema come back and more. I knew this would happen to some extent as my body was cleansing, and the skin is a "dumping grounds" so to speak, for toxins leaving the body, but I had no idea how much I had to "dump". Here's where the progress came to a halt. 6 weeks after stopping the yeast cleanse, The detox was intense. I looked and felt like I was severely sunburned from head to toe. I lived in the bath most of the time, or next to my space heater as the chills returned, and I had become confined to my bed. I honestly did not desire to live anymore. The lives of my children and husband kept me going.

As I look back on this stage I think several things. She taught me so much about the importance of healthy eating and educated me well on the benefits of natural remedies, God-given medicine in the bounty of creation around us. She taught me the damage that prescription medicine can do when taken without thought, personal education, or moderation. I still believe that the cleanses laid a good foundation for eradication of yeast. However, they were like setting off major bombs to get rid of all the junk, and my body just wasn't strong enough to handle it.

While bedridden from the cleanses and unable to function, a friend of mine who was helping me, through the hand of Providence, had been given the name of a doctor in town that had helped many people including her friend, a cancer survivor, deal with candida overgrowth. Since this was the only thing I knew was wrong with me at the time, we decided to, once again, venture into the medical world.

(This is the only birthday party I had to sit in the background for, July 2011. I think this was in between cleanses. My neck was swollen and red, as were many parts of my body. I couldn't bear to have my hair or really anything touch my skin, and lacked the strength to stand.)

Doctor number 5

We as a family, could not continue with the state I was in, any longer. My husband was carrying such a heavy burden of his own, working full time and being a full time mom replacement, and dad.

At my first appointment (August 2011) my husband went with me. I was unable to leave the house without a blanket, I had constant chills and I looked like a lobster from inflammation. But this doctor looked at me and said calmly, "I have seen worse than you." I wanted to give him a big kiss! I seriously thought I was done for, that I was a freak show, and that once again I would get that familiar doctor's puzzling look and an "I don't know." Although he used a combination of prescription drugs and natural remedies, he seemed to know more about my condition than any other doctor I had talked to. He had studied under Dr. William G. Crook who wrote "The Yeast Connection" and other related books. He explained, as it does in the book, that both overuse of steroids and antibiotics can lead to a yeast problem. He put me on a prescription anti-fungal right away, talked to me about the importance of rotating foods in my diet so as to not increase my allergic response to the foods I was eating. He also put me on some herbal teas, Vitamin E and a probiotic. I was on this regimen for at least 6 months, My diarrhea was under control again and itching was down to a minimum of 5-10 minutes a day, usually at night. This doctor did several things for me. He restored my faith in the medical community. He genuinely wanted to help me, understood my condition somewhat, showed me compassion, and gave me hope. He also taught me not to believe in every latest craze for health remedies. For example, while under his care, I had the experience of watching the documentary "Fat, Sick, and Nearly Dead", the story of a man who recovered from his serious health problems, including eczema by going on a juice fast and changing his diet and lifestyle. This was a new remedy for me, juicing to heal, and I wanted to try it. My doctor okayed it but warned me my "gut" would probably not be able to handle the sugar in the juices, even if just vegetables, and that I needed the fiber right now. He also was concerned that I might increase my allergic response by juicing foods I could eat as it made them highly concentrated. He was unfortunately, right about all of it. My diarrhea returned, I developed more sensitivity to the foods I juiced, and horrible detox symptoms. This is not to say juicing or juice fasting in moderation may not be a good thing for someone else. It obviously helped that man, and a good friend of mine with another chronic illness was helped greatly by it. It just wasn't the right thing for me at the time.

I had also begun going to Acupuncture during my time with this doctor (who approved of and encouraged it) at the advice of friends and co-workers, and believe this significantly contributed to the healing in this stage of my health journey. At some point though, I was not getting worse, but also not improving anymore, and when we got the name of yet another doctor about 45 minutes from our home, one with promising stories from people we knew, it was time to move on.

Thorughout this whole journey, I was journaling about what I was going through. This is a good snapshot of the frustration juxtaposing the faith and hope you have to have when dealing with a chronic illness. (During the above time but before I began juicing):

"I have learned that you are in fact what you eat, and only you can decide to take control of your health. No one will make you. If you're lucky like me though, God will place many people in your life who will not let you stay sick if they can help you. I have also learned that nothing is hopeless, no matter how hopeless it seems. My doctor has been taking me off of Diflucan to see how I fare, and I have not responded well. I asked him one time what is the longest time he has had someone on it, and he said 4 years. I have been on it for 6 months or so, so I guess it is just a drop in the bucket. I have been struggling a bit with depression as I was under the illusion that I am almost well, until taken off the Diflucan. I also began trying foods I formerly could not eat, such as nuts, beans, and some fruits that were not organic, and not responding well to that either. My doctor has asked that I try an elimination diet, where I eliminate one food at a time for 3 days and see if it gets better or stays the same. Dealing with this condition requires a great deal of patience. It feels like I can see the end, but it is still far away, further than I realized. I am making the practice daily now, of reminding myself where I was (with the encouragement of my husband) and being grateful for what I have and where I am. So here is my grateful list:

1. I am grateful to be sleeping through the night. No more 3 a.m. itching sessions.

2. I am grateful to have a supportive family, that keeps believing and trusting and encouraging.

3. I am grateful to still have many things to choose from to eat. My doctor told me one of his patients only had 3 things she could eat. 3.

4. I am grateful to be able to get out more. My illness no longer controls my entire life.

5. I am grateful that my reactions are not so bad that I have to soak for hours in the tub every day.

6. I am grateful to not be freezing all the time.

7. I am grateful to be able to cook for my family again.

8. I am grateful to be able to exercise again.

9. I am grateful to be able to wear jewelry again without reactions.

10. I am grateful to be able to wear some of my shoes again, without reaction.

11. I am grateful to be able to be a mom again.

12. I am grateful for daylight.

I have been thinking about this scripture:

Job 13:15

"Though he slay me, yet will I hope in him."

Doctor 6 and 7

As I mentioned before, we got the name of a new doctor. The stories we had heard from friends were that he was unconventional but had helped some very hard cases. I went to see him and told him my entire history that you have just read. He gave me a new, more in depth name for what I was dealing with. Yeast overgrowth was certainly a significant part of it, but he said it had gone beyond that, to an Environmental Illness. That the combination of genes, and all the other effects I had already learned about (overuse of antibiotics and steroids, stressful events in my life, leaky gut syndrome) had created a cascading effect that set my immune response into a downward spiral. He said it would only get worse not better, if I didn't get help. He advised me to start rotating several different probiotics, and anti-fungals, because doing the same ones over and over would create an immunity in my system to them. He said he could help me to improve but he could not get me well. (Kudos to all the doctors who were honest with me! We need more like them!) He felt my case was too far gone. He knew of 2 doctors in the country that he was confident could help me. One was his mentor, a Dr. Lieberman at the Center For Occupational and Environmental Medicine in Charleston, SC. I visited this doctor, that February (2012).

Dr. Lieberman's treatments were mostly not covered by insurance, but thanks to the generosity of family I was able to see this doctor. Here is the first post I wrote following my initial visit there: "I can hardly believe all that has happened! As it turns out, my visit to see Dr. Lieberman last February was monumental. We were there for 2 solid weeks. I have met with him over the phone long distance since then every few months, and he has adjusted, added, or eliminated treatments or medications. After our first long conversation, he looked at me and said, "Ok, if we can lighten your allergy load, deal with the yeast and treat your staph, would you be happy?" He has done so much more though. As we continued to meet, and he was able to study the results of my blood work and hormone test he began to realize my thyroid was hypo-active, I was severely hormonally imbalanced, my adrenals were taxed, and I was allergic to approximately 85 things. At his office, they have a testing lab like only 2 others in the country. You are injected with a particular dose of your suspected allergen, results are noted, you are re-injected with a different dose every 8 minutes, and this continues until you have reached a dose that your reaction has neutralized at. I sat there for over a week, with a timer, a pen, and clipboard. I would start out with a huge whelp on my arm with intense itching, and end up with no itching whatsoever. It was amazing! The final dose levels are put in a vial that is customized for you. You then give yourself injections. First for 10 days straight then down to 2 times a week. I was also given customized drops in their lab for staph infections, a nickel sensitivity, something to reduce inflammation, and something to neutralize a reaction (like benadryl). About a month or so later he added 1 hormone cream, then 2, and after much trial and error of trying different natural thyroid meds, he started me on some synthetic ones. I began to finally piece the puzzle together, now that I had more information on my health state. I did some research on hypothyroidism, and saw that inability to regulate body temperature, fatigue, and hair loss were all symptoms.

 2 years after his treatments I still had to rotate my foods, take allergy shots, adrenal supplements and thyroid meds. However, I reacted only occasionally, and in comparison to before, very mildly. I experienced what felt like a vacation for my health, after being treated by Dr. Lieberman.

Where I Am Now..

I had to stop most treatments with him eventually, however, because of lack of insurance coverage. Even though he moved my progress forward at light speed, my goal is to let my body heal itself, and not be so dependent on so many pills. I remain on thyroid meds as it is necessary. I have, in recent years read/learned about GAPS or Gut And Psychology Syndrome. If you can relate to any of the story above or any of my blogs about my kids' special needs, READ THIS BOOK. Truly, it was such an eye opener for me, connecting your gut health, (or lack of it) to so many health issues you would not even expect. We were on the GAPS diet for 2 yrs, and still try to drink bone broth frequently, eat naturally fermented foods, and take the supplements she recommends in the book. A year ago, though I wish I could have avoided it, I had to take yet another antibiotic for an emergency infection. Soon after, much of my allergies got worse, and gut health and eczema were affected. I am still dealing with the affects a whole year later. I was also introduced to this product which has helped me immensely. And this I cannot do without. I will write a separate post about both soon. The good news is, I have the knowledge to heal.

I realize now that every food choice I make, has a consequence. I was only given one body, and I have to be a good steward of it. I learned not to take at face value what any one doctor or health coach or anyone, says. Each body and health journey is unique. Everyone has something to teach you, if you are humble and willing to listen.

You can read about my spiritual journey through all of this, here.

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