After Larry's recent pancreatic attack about two weeks ago, I was sure that we were headed downhill and I was emotionally geared up for the worst.
Miraculously, I went to see him the morning after the attack and he had made an amazing turnaround. Out of all 8 attacks this was the quickest he has ever recovered. It usually takes him 3-5 days to even be able to tolerate food and then he would be down for 2-4 weeks regaining his strength. He also lost 20-30 lbs. after several of his attacks and lost nothing with this last one. His recovery only lasted about a week and he was back to eating almost normal and had regained most of his energy. What a miracle!
I am really trying not to get my hopes up too much because this has been such a roller-coaster ride, but things are looking hopeful. We know that our prayers are being answered and also believe that the treatment plan that Dr. Hope has us on for toxic mold poisoning is making a significant difference. We are so grateful for miracles.
Friday, May 30, 2014
Thursday, May 29, 2014
Larry's Treatment Plan
On April 25th we had a 4 hr. doctors appointment with Dr. Janette Hope M.D., President of the American Academy of Environmental Medicine and toxic mold survivor. All aspects of Larry's life (childhood, work environment, home environment etc.) and symptoms were taken into account.
We have now been on the treatment plan for almost a month. When we first walked away from Dr. Hope's office our heads were just swimming with an enormous amount of information including a 6 page treatment plan. Even though this treatment plan sounded overwhelming at first, we are starting to wrap our heads around it and believe we are having great success with the aspects of it that we have been able to apply thus far.
Following is a brief summary of his treatment plan and a few other inclusions that we have learned along the way. It is important to understand that most people that experience mold poisoning also develop chemical sensitivity. Larry has already had 3 severe bouts of this where he was like the "bionical" man of smells and was very sensitive to smells that could not be sensed by the normal person. These bouts of his when on for as long as a week and can become permanent.
1. ENVIRONMENTAL CONTROLS
A. Avoidance of exposure to water-damaged environments and/or moldy environments, including home, work place, school, car and other settings and items that have been exposed to these settings.
Note: We were fortunate to get out of our water-damaged environment in only seven months. Unfortunately, we have not yet been able to completely rid ourselves of all of the items that were in the water damaged environment. It is very interesting that a large majority of the "experts" in our society do not believe in "toxic mold poisoning", but the insurance companies all have exclusions for it. We were renters at the time of damage and we paid to have our things protected by renters insurance, but we have no coverage because of this exclusion. Larry has been camping out since his last release from the hospital and I have been working hard to get our house cleaned out (mostly the bedrooms at this point) of most of our belongings except for the essentials so that he can come home to a clean environment.
B. Avoidance of exposures to: pesticides of any sort, solvents/VOCs, smoke of any kind, plastics including eating or drinking from plastic, heavy metals, dry cleaning or locations near dry cleaners and most importantly any environment that makes you feel ill or unwell!
Note: The pesticides one is a tricky one for us with us owning a feed store.
C. Use non-toxic items like baking soda, vinegar, Bon Ami non-chemical abrasive cleaner and 20 Mule Team borax for cleaning and laundry.
Note: We were already in the process of switching over to non-toxic cleaning items. One product that I also use for cleaning is colloidal silver (a natural antibacterial). If you go to norwex.biz they make cleaning rags, wash cloths and towels with the silver already in them. They also have a really neat window cleaning and mopping system.
D. Organic diet to minimize exposure to pesticides and other contaminants.
Note: I buy as much as I can organic and I also do a lot of my cooking out of Sally Fallon's book "Nourishing Traditions". I HIGHLY recommend this book to everyone. It is full of so much valuable information.
E. Evaluation and control of any documented excess EMF exposures.
Note: A book could be written about this whole subject. An excellent book that Dr. Hope recommended that I have ordered is called "Prescriptions for a Healthy House" and they have a lot of good info. on EMF exposures.
F. Glass (corning visionware) or ceramic-lined cast iron cookware. Avoid non-stick/Teflon coating and aluminum. Stainless steel may leach nickel which can be problematic for some with allergies and autoimmune conditions.
Note: These are very similar recommendations to Sally Fallon's cookware recommendations. I also bake with stoneware.
G. Triple element air filter including HEPA, carbon and zeolite to minimize expsure to particulates and VOCs, especially in the bedroom (NO ozone).
Note: A great place to order a good one of these is on Dr. Ray's website toxic-black-mold-syndrome.com. They are about $650 each and I need two for my house so I am trying to get some money together to pay for them. We have ordered one for our feed store to help reduce the toxic load at work.
H. Create a "bedroom sanctuary". Uncarpeted room with healthy, non-contaminated bedding and knick-knacks, or keep these items primarily in solid wood or glass cabinets.
I. Filter drinking, bathing and washing water.Whole house water filter with additional drinking water filter is best. Alternatively, drinking water filter and chlorine water filter for shower.
J. If outdoor air quality is good, spend as much time possible outdoors.
K. Spend time daily in the sun without sunblock. If a sunblock is needed, use a barrier non-nano particle sunblock such as zinc, rather than a chemical sunblock.
Note: I ordered some of this off of badgersport.com
2. SEQUESTERING AGENTS
A. Cholestyramine (by prescription--this is also available with no additives, but it is very expensive and most insurances will not cover it)
B. Charcoal
3. GLUTATHIONE (glutathione protects cells against free radicals that cause oxidation damage, neutralizes/removes toxins and enhances immune function)
A. Readisorb Glutathione in glass bottle. This is liquid medication and can be ordered directly by going to readisorb.com
B. Nasal glutathione
C. Nebulized glutathione
D. Transdermal glutathione
Note: The last 3 forms of glutathione are by prescription only and have to be made in a sterile compounding pharmacy. Unfortunately, our insurance only covered $13 of our $500 bill (Grrrrrr!)
Also, our family has had great success with "protandim" an all natural herbal supplement that upregulates glutathione in the body (visit abcliveit.com to view a dateline that aired about this product). If interested in ordering please visit my website at lifevantage.com/jillward.
4. UPPER RESPIRATORY CARE
A. Saline nasal rinse with Neti Pot 2-4 times per day.
B. Nasal Itraconazole (this is another prescription only med that is made at the sterile compounding pharmacy).
5. SKIN CARE
A. Collective wellbeing Charcoal body wash
Note: We really like this soap, it just takes some getting used to washing in black soap.
6. SAUNA/EXERCISE
A. Exercise as tolerated. Exercise to sweat if able to tolerate.
B. Sauna therapy (I believe that this type of therapy will be beneficial to our family for many reasons. When I have the money, I plan to order one off of the heanenlyheat saunas website).
C. Warm epsom salt baths with filtered water.
7. DIET
A. Trial of gluten-free diet
B. Trial of dairy-free diet
C. Fermented foods (homemade yogurts or kefir, sauerkraut, kimchee)
D. Increase consumption of foods with natural anti-fungal properties such as garlic and coconut.
E. Increase consumption of cruciferous vegetables (broccoli, cauliflower, brussel sprouts, cabbage)
8. SUPPLEMENTS
Dr. Hope has him on 15 different supplements:
1. Vitamin C
2. Fish oil (Carlson's brand oil or Nordic Nturals Capsules)
3. Magnesium
4. Vitamin D3
5. Coenzyme B Complex (Country Life)
6. CoQ10
7. Zinc
8. Acetyl L Carnitine
9. Phosphatidyl serine
10.KPAX
11.Hydrolyzed Whey Protein
12.Probiotics
13.Sacchromyces boulardii
14. Methyl B12
15. Freeze dried Acai powder
At first all of this information seemed so overwhelming. It has taken reading the treatment plan over and over and doing some of my own research to make sense of everything.
One of the most helpful things that I did was go and get a pill sorter so that I could organize his medicines. This treatment plan has taken a lot of dedication and work on both of our parts, but we are seeing some amazing results that I will write about in my next post so it is very worth the time and effort!
We have now been on the treatment plan for almost a month. When we first walked away from Dr. Hope's office our heads were just swimming with an enormous amount of information including a 6 page treatment plan. Even though this treatment plan sounded overwhelming at first, we are starting to wrap our heads around it and believe we are having great success with the aspects of it that we have been able to apply thus far.
Following is a brief summary of his treatment plan and a few other inclusions that we have learned along the way. It is important to understand that most people that experience mold poisoning also develop chemical sensitivity. Larry has already had 3 severe bouts of this where he was like the "bionical" man of smells and was very sensitive to smells that could not be sensed by the normal person. These bouts of his when on for as long as a week and can become permanent.
1. ENVIRONMENTAL CONTROLS
A. Avoidance of exposure to water-damaged environments and/or moldy environments, including home, work place, school, car and other settings and items that have been exposed to these settings.
Note: We were fortunate to get out of our water-damaged environment in only seven months. Unfortunately, we have not yet been able to completely rid ourselves of all of the items that were in the water damaged environment. It is very interesting that a large majority of the "experts" in our society do not believe in "toxic mold poisoning", but the insurance companies all have exclusions for it. We were renters at the time of damage and we paid to have our things protected by renters insurance, but we have no coverage because of this exclusion. Larry has been camping out since his last release from the hospital and I have been working hard to get our house cleaned out (mostly the bedrooms at this point) of most of our belongings except for the essentials so that he can come home to a clean environment.
B. Avoidance of exposures to: pesticides of any sort, solvents/VOCs, smoke of any kind, plastics including eating or drinking from plastic, heavy metals, dry cleaning or locations near dry cleaners and most importantly any environment that makes you feel ill or unwell!
Note: The pesticides one is a tricky one for us with us owning a feed store.
C. Use non-toxic items like baking soda, vinegar, Bon Ami non-chemical abrasive cleaner and 20 Mule Team borax for cleaning and laundry.
Note: We were already in the process of switching over to non-toxic cleaning items. One product that I also use for cleaning is colloidal silver (a natural antibacterial). If you go to norwex.biz they make cleaning rags, wash cloths and towels with the silver already in them. They also have a really neat window cleaning and mopping system.
D. Organic diet to minimize exposure to pesticides and other contaminants.
Note: I buy as much as I can organic and I also do a lot of my cooking out of Sally Fallon's book "Nourishing Traditions". I HIGHLY recommend this book to everyone. It is full of so much valuable information.
E. Evaluation and control of any documented excess EMF exposures.
Note: A book could be written about this whole subject. An excellent book that Dr. Hope recommended that I have ordered is called "Prescriptions for a Healthy House" and they have a lot of good info. on EMF exposures.
F. Glass (corning visionware) or ceramic-lined cast iron cookware. Avoid non-stick/Teflon coating and aluminum. Stainless steel may leach nickel which can be problematic for some with allergies and autoimmune conditions.
Note: These are very similar recommendations to Sally Fallon's cookware recommendations. I also bake with stoneware.
G. Triple element air filter including HEPA, carbon and zeolite to minimize expsure to particulates and VOCs, especially in the bedroom (NO ozone).
Note: A great place to order a good one of these is on Dr. Ray's website toxic-black-mold-syndrome.com. They are about $650 each and I need two for my house so I am trying to get some money together to pay for them. We have ordered one for our feed store to help reduce the toxic load at work.
H. Create a "bedroom sanctuary". Uncarpeted room with healthy, non-contaminated bedding and knick-knacks, or keep these items primarily in solid wood or glass cabinets.
I. Filter drinking, bathing and washing water.Whole house water filter with additional drinking water filter is best. Alternatively, drinking water filter and chlorine water filter for shower.
J. If outdoor air quality is good, spend as much time possible outdoors.
K. Spend time daily in the sun without sunblock. If a sunblock is needed, use a barrier non-nano particle sunblock such as zinc, rather than a chemical sunblock.
Note: I ordered some of this off of badgersport.com
2. SEQUESTERING AGENTS
A. Cholestyramine (by prescription--this is also available with no additives, but it is very expensive and most insurances will not cover it)
B. Charcoal
3. GLUTATHIONE (glutathione protects cells against free radicals that cause oxidation damage, neutralizes/removes toxins and enhances immune function)
A. Readisorb Glutathione in glass bottle. This is liquid medication and can be ordered directly by going to readisorb.com
B. Nasal glutathione
C. Nebulized glutathione
D. Transdermal glutathione
Note: The last 3 forms of glutathione are by prescription only and have to be made in a sterile compounding pharmacy. Unfortunately, our insurance only covered $13 of our $500 bill (Grrrrrr!)
Also, our family has had great success with "protandim" an all natural herbal supplement that upregulates glutathione in the body (visit abcliveit.com to view a dateline that aired about this product). If interested in ordering please visit my website at lifevantage.com/jillward.
4. UPPER RESPIRATORY CARE
A. Saline nasal rinse with Neti Pot 2-4 times per day.
B. Nasal Itraconazole (this is another prescription only med that is made at the sterile compounding pharmacy).
5. SKIN CARE
A. Collective wellbeing Charcoal body wash
Note: We really like this soap, it just takes some getting used to washing in black soap.
6. SAUNA/EXERCISE
A. Exercise as tolerated. Exercise to sweat if able to tolerate.
B. Sauna therapy (I believe that this type of therapy will be beneficial to our family for many reasons. When I have the money, I plan to order one off of the heanenlyheat saunas website).
C. Warm epsom salt baths with filtered water.
7. DIET
A. Trial of gluten-free diet
B. Trial of dairy-free diet
C. Fermented foods (homemade yogurts or kefir, sauerkraut, kimchee)
D. Increase consumption of foods with natural anti-fungal properties such as garlic and coconut.
E. Increase consumption of cruciferous vegetables (broccoli, cauliflower, brussel sprouts, cabbage)
8. SUPPLEMENTS
Dr. Hope has him on 15 different supplements:
1. Vitamin C
2. Fish oil (Carlson's brand oil or Nordic Nturals Capsules)
3. Magnesium
4. Vitamin D3
5. Coenzyme B Complex (Country Life)
6. CoQ10
7. Zinc
8. Acetyl L Carnitine
9. Phosphatidyl serine
10.KPAX
11.Hydrolyzed Whey Protein
12.Probiotics
13.Sacchromyces boulardii
14. Methyl B12
15. Freeze dried Acai powder
At first all of this information seemed so overwhelming. It has taken reading the treatment plan over and over and doing some of my own research to make sense of everything.
One of the most helpful things that I did was go and get a pill sorter so that I could organize his medicines. This treatment plan has taken a lot of dedication and work on both of our parts, but we are seeing some amazing results that I will write about in my next post so it is very worth the time and effort!
Friday, May 16, 2014
Letter To Our Family
Update: This letter was written yesterday with the intent of sending it out last night. Larry went back into the hospital with another pancreatic attack earlier this morning. Looks like we will be making some drastic changes sooner rather than later.
Dear Friends & Family:
My purpose in writing this letter is to give you an update on Larry's health, to share our story with those who have heard bits and pieces about what we have been going through and to most importantly ask for your continued loved and support as we make very difficult decisions that not everyone may understand or agree with. Some of you may think we are crazy and we have wondered that ourselves as we have went through these very trying experiences.
About 18 mos. ago our family moved out to a house on 5 acres. We made this move with the vision of having a more healthy, carefree lifestyle. Our kids would have plenty of land to run on, we could raise and grow our own food and we would have good, clean well water. Little did we know that this was just the beginning of a “hellish nightmare” for our family.
Shortly after moving into this home our family started getting very sick. Spencer was rushed to Primary Children's hospital and diagnosed with Type 1 diabetes, Larry started having potentially deadly and excruciatingly painful pancreatic attacks and to date has had seven, Enoch developed asthma, had stomach aches and often complained of headaches, Ben, Bekah & Rachel developed chronic coughs and when they were seen by John's Hopkins Hospital was very alarmed by these coughs when we visiting them for their 3 year check-up for A-T. Rachel would cough so hard that she would start throwing up mucous and stop breathing. I finally took her to Primary Children's hospital because we weren't finding any answers. She was diagnosed with chronic rhinosinusitis (which I now know is a common symptom of mold poisoning). During this time I also came down with Bell's Palsy and suffered from severe brain fog and depression. In one year we had 9 hospital visits and 11 drs. visits for illness. This was very unusual for our family.
The one other major trial that was thrown into the mix at the time was the very unexpected news that we were expecting another baby. I was already feeling so overwhelmed because we already had six children, three of whom had been diagnosed with the rare degenerative disease A-T. We also had no maternity insurance and I was told after my last pregnancy that having another baby would be potentially life threatening for me because of my previous 3 c-sections.
After much research, ruling out other causes and some inspiration we tested the house for toxic mold. There were several toxic molds present in the house and we were advised by one of the worlds' top toxicologists to vacate the house. Thanks to divine intervention and many kind family members and friends, we were able to get back into our old house two weeks before our baby was born. In retrospect, this house was the perfect breeding ground for toxic mold growth. It had a leaky roof and had sat empty for two years.
After moving back to our old house a lot of our symptoms disappeared, but Larry has continued to have pancreatic attacks which will eventually lead to diabetes or pancreatic cancer. He went from being such a strong man and in overall excellent health to becoming so weak and unhealthy. He even fainted in my arms at one of our hospital stays and to this day continues to suffer a variety of bizarre symptoms, including the constant fear of another pancreatic attack. Last August he tested positive for having mycotoxins (bi-product of exposure to toxic molds and some of the most toxic substances known to man). His recent test still tested positive for mycotoxins. Some people are very sensitive to these poisons and have to take extreme measure to regain their health.
The events of last Sunday were very alarming to me. Friday and Saturday Larry was not feeling well. He was kind enough to take me out for a Mother's Day dinner even though he was feeling miserable. By Sunday afternoon he was still not feeling well and broke down and ask me what I was going to do if he didn't make it. Even though I have thought about this a million times over the past year, this is the first time he has ever ask me that and we have openly discussed it. I knew that it was time to reexamine the things we needed to do to get him healthy.
A few weeks ago we had the opportunity to go to Santa Barbara, CA and visit with Dr. Janette Hope MD, President of the American Academy of Environmental Medicine and mold survivor. We came home with 6 pages of protocol for his treatment plan. The very first item on this treatment plan is “avoidance of exposure to water-damaged environments and/or moldy environments, including home, work place, school, car and other settings and items that have been exposed to these settings.” We were also given some pharmaceutical treatments that have seemed to be helping, but I am afraid that they are not going to be enough to get him well.
This first request on her treatment plan is so devastating and seems like such an overwhelming task, but I have known for quite some time that this day might be coming. I have often reflected on the lives of our pioneer ancestors who gave up all of their worldly possessions and often not just once. I have often ask myself why I am any different?
At this point in my life, I would give up all of my earthly possessions to get my family well. There are people who have lived in tents to get their health back after being poisoned by this stuff. If that is what is required of me then so be it. We can replace all of our earthly possessions, but we cannot replace our health or a family member. At the end of the day I have to be able to look my children in the eyes and tell them that I did EVERYTHING I could to help their father get well.
I have been through A LOT of trials in my life, but the events of the last year and a half have absolutely broken me. We are faced with devastation on so many levels. We are faced with an illness that is not well known about or accepted in society and the treatments and testing we need are only partly or not at all covered by our insurance. We are also looking at having to give up everything we own, including his ability to work around the grains at the feed store that he has worked so hard to build over the past 7 years. Unfortunately, Larry is not the only one that needs this medical help as there are many of us who still struggle with different ailments very possibly related to toxic mold poisoning. I am not sure how things will work out for us, but I have learned in my life that the Lord always provides a way even if it is at the last minute.
I don't know how we will need to go forward from here, but I am writing to ask for your continued support, love and prayers. If we make choices that do not make sense to you please do not judge us and criticize us because you don't understand what we are having to go through. Toxic mold poisoning is like the “leprosy” of our day and it is often very difficult for people on the outside to understand what people suffering from toxic mold poisoning are being forced to go through. After much research and visiting with people that have been through this, the advice that sticks in my head the most is that “most people do not do what they need to do soon enough” Unfortunately, they either die an untimely death or are forced to live a very secluded life and struggle with chemical sensitivity because they become allergic to everything around them.
I do not know the Lord's full purpose behind this incredible trial that we are going through, but if it serves as a tool to bring us closer to Christ and to each other then it will be worth it. I also hope that we can be pioneers for others around us to bring awareness to the prevention of this horrible sickness and help others who may be suffering from it as others have done for us.
Thank for your continued love and support.
Love,
Jill
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