I have been on the supplements prescribed my Mary from Waller's office for 12 weeks. I am feeling considerably better, so I know a lot is working. My insulin levels are good for the first time ever! My vitamin D levels are normal. The pain is less, but still there. (Increase MSM).Increased energy, but lots of acne. (1/2 dose of progesterone- down to 50mg)
According to my bloodwork, here is what is not:
1. thyroid is still off (increased armor thyroid)
2. Iron is still way low(10) (see hematologist)
3. Pregnenolone is low
4. Infrequent bowel movements (keep taking magnesium)
5. Feel wired. (switched adrenal supports)
Saturday, May 31, 2014
From Bone Broth to Bike Rides
Recently Dr. Waller's office asked patients to submit their testimonies. Here is what I wrote:
Thursday, August 12, 2012: The thought of getting out of bed is torture. And a shower- no way! That is waaaaay too much work. There is so much pressure in my head it feels like it is going to burst. I try not to move too much because if I get overly fatigued the pain sets in.
This exerpt was from journal I started soon after I got sick, documenting my journey with chronic fatigue. Just a year before that I was involved in crossfit four days a week and happily raising 2 preschoolers with my husband in Birmingham, MI. Everything changed when I was diagnosed with mono the previous year. My husband got mono at the same time. But, unlike him, I never recovered. I remained constantly fatigued. Everyday felt like I had the flu. We had to hire full time help to care for the kids and I had to take at least 2 naps a day just to survive.
I went from doctor to doctor, trying to find out what was wrong with me. I was told everything from, "it is all in your head," to "you are no spring chicken." (I was 34 at the time.) I finally found a doctor who diagnosed me with prolonged Epstein Barr, otherwise known to some as chronic fatigue. I spent the first year and a half after my diagnosis on very strong medication prescribed by that doctor. That type of medication may work for some, but it wreaked havoc on my body and I wound up in the hospital after I had a toxic reaction to it. Because of the horrible side effects, I lost 30 pounds (I as already slender) and my gut was in bad shape.
A few people had suggested IV nutrition to me as a way of healing my gut. I was eventually referred to the Waller Wellness Center by another holistic doctor. My original intention was just to get the IV's. But, I was so impressed by the knowledge and care of Mary (NP) and Pamela (PA) on my first visit I decided to transfer all my care there. They were able to give detailed explanations as to why my immune and other body systems weren't functioning properly and they were confident I would get well.
I have been getting 2 IV's a week for 4 months now and am on 17 supplements. They are all tailored to what several specific tests showed my body is lacking. I have been following the GAPS diet, which takes a lot of work including cooking fresh vegetables and meat and not eating anything processed.
It has been a big investment of time and financial resources throughout this journey. At times along the way I have been discouraged or didn't know if I would really get better. My biggest cheerleaders have been the nurses at The Center- Naomi, Alice and Robyn. There've been many days I've come in crying because I was so tired I'd have to miss one of my kids' field trips or I'd have a migraine that lasted days and Naomi would remind me of the progress that she'd seen already. I was constantly reminded that it would take time but I would get well if I didn't give up.
I didn't give up and I am starting to get well! It is a slow and steady progression.I didn't get sick overnight and I don't expect to get well overnight either. I only nap once a day now. I have worked up to taking 10 minute walks outdoors. I pick my kids up from school everyday and we eat dinner together. A year ago my kids asked if I knew how to ride a bike. Were they serious? I had done a triathlon just a few years back! But now all they could remember was me being sick. What they don't know is that last weekend I had my bike tires pumped up with air. They were pretty flat after 3 years of nonuse. I'm looking forward to the next sunny weekend when I can surprise my whole family by asking them to join me for a bike ride!
Thursday, August 12, 2012: The thought of getting out of bed is torture. And a shower- no way! That is waaaaay too much work. There is so much pressure in my head it feels like it is going to burst. I try not to move too much because if I get overly fatigued the pain sets in.
This exerpt was from journal I started soon after I got sick, documenting my journey with chronic fatigue. Just a year before that I was involved in crossfit four days a week and happily raising 2 preschoolers with my husband in Birmingham, MI. Everything changed when I was diagnosed with mono the previous year. My husband got mono at the same time. But, unlike him, I never recovered. I remained constantly fatigued. Everyday felt like I had the flu. We had to hire full time help to care for the kids and I had to take at least 2 naps a day just to survive.
I went from doctor to doctor, trying to find out what was wrong with me. I was told everything from, "it is all in your head," to "you are no spring chicken." (I was 34 at the time.) I finally found a doctor who diagnosed me with prolonged Epstein Barr, otherwise known to some as chronic fatigue. I spent the first year and a half after my diagnosis on very strong medication prescribed by that doctor. That type of medication may work for some, but it wreaked havoc on my body and I wound up in the hospital after I had a toxic reaction to it. Because of the horrible side effects, I lost 30 pounds (I as already slender) and my gut was in bad shape.
A few people had suggested IV nutrition to me as a way of healing my gut. I was eventually referred to the Waller Wellness Center by another holistic doctor. My original intention was just to get the IV's. But, I was so impressed by the knowledge and care of Mary (NP) and Pamela (PA) on my first visit I decided to transfer all my care there. They were able to give detailed explanations as to why my immune and other body systems weren't functioning properly and they were confident I would get well.
I have been getting 2 IV's a week for 4 months now and am on 17 supplements. They are all tailored to what several specific tests showed my body is lacking. I have been following the GAPS diet, which takes a lot of work including cooking fresh vegetables and meat and not eating anything processed.
It has been a big investment of time and financial resources throughout this journey. At times along the way I have been discouraged or didn't know if I would really get better. My biggest cheerleaders have been the nurses at The Center- Naomi, Alice and Robyn. There've been many days I've come in crying because I was so tired I'd have to miss one of my kids' field trips or I'd have a migraine that lasted days and Naomi would remind me of the progress that she'd seen already. I was constantly reminded that it would take time but I would get well if I didn't give up.
I didn't give up and I am starting to get well! It is a slow and steady progression.I didn't get sick overnight and I don't expect to get well overnight either. I only nap once a day now. I have worked up to taking 10 minute walks outdoors. I pick my kids up from school everyday and we eat dinner together. A year ago my kids asked if I knew how to ride a bike. Were they serious? I had done a triathlon just a few years back! But now all they could remember was me being sick. What they don't know is that last weekend I had my bike tires pumped up with air. They were pretty flat after 3 years of nonuse. I'm looking forward to the next sunny weekend when I can surprise my whole family by asking them to join me for a bike ride!
Thursday, March 27, 2014
Waller Wellness Report Round One
The good news is that there are many things wrong with me that are fixable through medication and supplements. My immune system does not have what it needs to function properly right now, much less fight Epstein Barr. Once it starts getting what it needs it will have energy to do it's job and then I will have energy. :)
For now, I will continue to get IV's twice a week so that the nutrients go straight into my body, bypassing my gut. If my gut is having problems breaking down food or absorbing anything that becomes a non-issue. They will add MSM to my IV's once a week, which should help with the pain. Some people experience relief in just one treatment! Praying that is me.
Labs of concern:
THYROID: Reverse T3 (ideal is less than 15, mine is 24). Prescribed Armor.
PREGNENOLONE (memory): ideal is greater than 100, mine is 44. Supplement.
FERRITIN (iron): ideal is greater than 20, mine is 10. Iron supplement.
GLUCLOSE: (this low number is a mystery because I have so little carbs in my diet. Docs hope it will fix itself as other things get fixed) mine is 55. Keep eating fats and proteins. Recommended eating coconut oil out of the jar.
NKT (Natural Killer T Cells- an arm of the immune system): ideal is greater than 8, mine is 2. Hoping this will resolve as immune system gets stronger.
Specialty Tests:
MENOPAUSE PLUS TEST: low testosterone, progesterone adjustment needed (switching to oral dose).
ADRENOCORTEX STRESS PROFILE: ideal DHEA range is greater than 300, mine is 197. (Note: This profile measures the levels of cortisol and DHEA and provides an evaluation of how cortisol levels differ throughout the day. Cortisol is involved in many important functions in the body, including metabolism and utilization of proteins, carbs and fats, the body's response to stress and the control of inflammation and proper blood sugar levels. DHEA helps regulate body weight, blood pressure and immune unction, and is used by the body to make the hormones, testosterone and estradiol. Too much or too little of cortisol or DHEA can lead to illness, and it is important that these two hormones be in balance with each other.) Adaptagen recommended.
NUTREVAL: Low in Lipoic Acid, B1, B2, B3, Pancreatic Enzymes, Glutathione and 17 amino acids. These 17 amino acids can be compounded and put in a capsule for me to take daily. I will take the recommended supplements for the other needs. It also showed that I had high levels of mercury. I tested high on the oxidative stress markers gluthione and lipid peroxides (trouble detoxing). No tuna or sushi.
For now, I will continue to get IV's twice a week so that the nutrients go straight into my body, bypassing my gut. If my gut is having problems breaking down food or absorbing anything that becomes a non-issue. They will add MSM to my IV's once a week, which should help with the pain. Some people experience relief in just one treatment! Praying that is me.
Labs of concern:
THYROID: Reverse T3 (ideal is less than 15, mine is 24). Prescribed Armor.
PREGNENOLONE (memory): ideal is greater than 100, mine is 44. Supplement.
FERRITIN (iron): ideal is greater than 20, mine is 10. Iron supplement.
GLUCLOSE: (this low number is a mystery because I have so little carbs in my diet. Docs hope it will fix itself as other things get fixed) mine is 55. Keep eating fats and proteins. Recommended eating coconut oil out of the jar.
NKT (Natural Killer T Cells- an arm of the immune system): ideal is greater than 8, mine is 2. Hoping this will resolve as immune system gets stronger.
Specialty Tests:
MENOPAUSE PLUS TEST: low testosterone, progesterone adjustment needed (switching to oral dose).
ADRENOCORTEX STRESS PROFILE: ideal DHEA range is greater than 300, mine is 197. (Note: This profile measures the levels of cortisol and DHEA and provides an evaluation of how cortisol levels differ throughout the day. Cortisol is involved in many important functions in the body, including metabolism and utilization of proteins, carbs and fats, the body's response to stress and the control of inflammation and proper blood sugar levels. DHEA helps regulate body weight, blood pressure and immune unction, and is used by the body to make the hormones, testosterone and estradiol. Too much or too little of cortisol or DHEA can lead to illness, and it is important that these two hormones be in balance with each other.) Adaptagen recommended.
NUTREVAL: Low in Lipoic Acid, B1, B2, B3, Pancreatic Enzymes, Glutathione and 17 amino acids. These 17 amino acids can be compounded and put in a capsule for me to take daily. I will take the recommended supplements for the other needs. It also showed that I had high levels of mercury. I tested high on the oxidative stress markers gluthione and lipid peroxides (trouble detoxing). No tuna or sushi.
Saturday, March 22, 2014
Real Improvement
Two and a half years ago I had the perfect storm in my life- got sick with mono, moved into a new house, two kids in preschool, a husband at a new job and overall just a lot of stress. My body couldn't fight off the mono. In the last couple of weeks things are coming together in the opposite sort of way…I listened to a sermon on Sunday, March 9 from my ugly brown recliner that has forever changed my life. It actually took me three times to get through it because I didm't want to hear what the pastor had to say at first. But, by the last time I heard God's voice, his invitation to surrender. The last two and a half years I have had to involuntarily surrender so much- how I spend my time, what I can eat, the fact that I am too weak to do my own laundry. But, I held on fiercely to what I could. In that sermon God asked me to trade that control in. He also asked me to trade some other things in but I won't get into all that here. Ever since that day almost two weeks ago I have experienced a freedom in my mind that I have not ever felt before. The ruminating negative thoughts are gone. It is like I have been let out of jail. In addition, I can tell the IV's are giving me more energy. I am still napping in the afternoon, but when I wake up I am ready to engage the kids for the rest of the day. The fatigue is not taking over my day. Unfortunately, the pain in my upper body is still very life altering. It hurts to carry my laptop, cook dinner etc. However, I am more confident than ever that healing is coming!
Waller Wellness
I saw Mary Wilson at the Waller Wellness Center in Rochester Hills in the beginning of February with the intention of getting Meyer Cocktails in their office. I was so impressed with her expertise that I decided to switch my care over completely from Dr.Conley. Over the course of 6 weeks she prescribed 10 nutritional IV's, had me do a number of blood tests (21 viles!), a Nutrival test and the Genova Metapause test. Jim and I meet with her on Wednesday, March 26 to get the results and hear her recommendations for future treatment. As a side note I did the GAPS intro diet for 3-4 months and am now on the GAPS regular diet and do not have any gut pain.
Friday, January 31, 2014
GI Check In
In my phone consult with Dr. Conley today he told me that my stool sample test (Genova) revealed that there are no parasites or abnormal bacteria. (Although he suggested that the African stool sample test would be more accurate) It showed that my PH was off at 73 (Normal is greater than 100) and would like to put me on a pancreatic digestive enzyme. The test also showed I'm low in fatty acids. It also showed I am high in lacto farrin, which could suggest inflammation of the bowel or inflammatory bowel disease. I also had an appt with Dr. Desai (Beaumont GI) yesterday to follow up with my hospital visit over Christmas. Both he and Conley were puzzled because I am finally having normal bowel movements (thank you, magnesium!) but I am still having gut pain when I eat most foods. He said that he is sure that I don't have IBD because I would be having diarrhea. His conclusion- it is probably a toxic reaction to the valtrex that Lerner prescribed that will go away over time. I told him that Dr.Conley highly recommends a colonoscopy so we can rule some things out as we proceed. He had said an adamant no. His prescription- keep eating and take walks outside to enjoy the fresh winter air. He does not think a follow up visit is necessary. I have some bloodwork yet to do for him and he said he will call if he sees a problem. Trying not to be discouraged and praying for wisdom for next steps.
Wednesday, January 29, 2014
Changes to supplements
Recently Dr. Massoumi suggested I start 232 Adapt and Terramin. I didn't notice a difference by taking one Adapt a day but I have noticed a difference by taking 2. Definitely more energy. Also, a friend suggested essential oils to me so I ordered some of those. "Deep relief" is a roll on which is giving me some relief on the painful muscles of my upper back. I also started Ninja Red (drink) two days ago which is supposed to give me more energy. I am only up 1.5 pounds from when I left the hospital. I'm on day 7 of the GAPS introductory diet. I can eat chicken, beef, sweet potatoes, zucchini, beets and avocado. Squash and hamburgers (I know it is beef, but it seems to be the one kind I can't eat!) make me sick. Oh, and I tried an egg for the first time since they made me sick in August. I did great with them! Been eating a raw egg yoke a day! I started physical therapy (gentle, private 20-30 minute pilate lessons at Body Pure) 2x a week). It has been wonderful in helping me strengthen my core and lats! Two body parts I forgot I had!
Monday, January 13, 2014
Cleveland Visit
God has been teaching me a lot about unconditional love. One way he recently did this was through my sister-in-law, Kristen, who made an appointment with Dr.Nemah, meridian Regulatory Acupuncture doctor, in Cleveland, OH. He is a family friend of hers and she has been suggesting I see him for over a year. Everyone seems to have a magic bullet doctor for me (sorry Kristen) so we did not pursue this doctor. But, Kristen really thought we should see him so she recently got me an appointment with him (we found out later he has a year and a half waiting list and she got me in in a week), made arrangements with my sister to watch the kids (more unconditional love) and paid for our appointment. All Jim and I had to do was show up.(http://drnemeh.com)
Dr Nemah spent almost 2 1/2 hours with me, doing the acupuncture and silently praying. He was so humble and kept saying it was all God and not him. He seemed to know things that were wrong with me without me telling him. When I was there my pain went down to zero for the first time in 2 years. He spoke with utter confidence that I was going to get better- digestion, fatigue, insomnia, chronic pain etc.
After leaving his office I went back to being in pain, but I told us this might happen as my body adjusts to what he did. I have still continued to have pain while I eat and the physical aches and pains and fatigue are back, but something is different. I am hopeful.
Dr Nemah spent almost 2 1/2 hours with me, doing the acupuncture and silently praying. He was so humble and kept saying it was all God and not him. He seemed to know things that were wrong with me without me telling him. When I was there my pain went down to zero for the first time in 2 years. He spoke with utter confidence that I was going to get better- digestion, fatigue, insomnia, chronic pain etc.
After leaving his office I went back to being in pain, but I told us this might happen as my body adjusts to what he did. I have still continued to have pain while I eat and the physical aches and pains and fatigue are back, but something is different. I am hopeful.
Monday, January 6, 2014
Levels Doubled
Dr. Lerner told me today that my EBV levels have again doubled to an all time high of 80. His orders were to gain weight and rest. God spoke to me that my rest is ultimately in Him:
Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.” (Matthew 11:28-30 NKJV)
Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.” (Matthew 11:28-30 NKJV)
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