Environmental Illness is costly not only emotionally to the person suffering through it and their family but it is monetarily costly as well. In the beginning of my illness I was sent to an allergy and immunology specialist by my ENT, Dr. Spitzer. Our insurance paid for the office visit but did not cover the EPD (enzyme potentiated) treatments. These treatments consisted of two injections given every two months at a cost of $150.00. My insurance did not cover the special B Vitamins I needed. And it didn’t cover the special flours and other items I needed to bake my own breads, cookies, and crackers. I had been told to avoid wheat, oats, barley, corn, and fermented products like soy sauce, catsup, vinegar, etc. I began making trips to a health food store an hour from home to buy rice flour, tapioca flour, potato starch, garbanzo bean flour, carob products, guar gum (a stabilizer to replace gluten not found in these flours), and special rings to make my hamburger buns.
Fast forward a bit and I need to take a nebulized antifungal. My insurance would pay for the nebulizer ($150) but not the compounded antifungal for the nebulizer ($1200.). Fortunately, I was put into a a trial that allowed me to buy the antifungal for $300.00 I believe.
Before long I was being sent to Dallas for the first of what would be several trips. I had filed for workers’ compensation but who knew what the outcome would be and if these new expenses would be covered. My first trip included the cost of airfare for both my husband and I from California to Dallas. It cost us over $400 to rent a car at the airport for the week my husband would be there (we learned that it would have been cheaper to rent a car outside of the airport). There was the expense of my husband making a second round trip by air to visit me when my stay was to be extended longer than we had planned. The cost of my room was $1100 per month for a two-bedroom environmentally safe apartment if I shared it with a roommate. My stay was nearly four months. None of these expenses were covered by insurance. I had to buy organic food and unusual foods for testing when I was rapidly losing foods that I normally ate. A loaf of yeast-free bread made of water chestnut flour was $7.00. A water chestnut flour bagel was $3.00. My bottled water was over $1.00 per bottle. I had to have special shampoos and soaps as well. Again these were not covered by insurance. My treatments had to be paid up front and then submitted for reimbursement by my insurance. Each item I did skin testing on cost me $23. I can’t even begin to tell you how many items I tested just to find safe foods and that was before I tested molds, pollens, and other inhalants. I was doing two IV therapies a week at $125 per IV. I was doing daily sauna therapy that was $35 per session. I was doing oxygen therapy. I was going through numerous labs and tests that were also very expensive. Weekly I would pull out a credit card one that still had room to charge on it), pay the weekly bill, then spend the weekend putting it all together to mail to my insurance. They paid a percentage of those bills.
I returned home from Dallas with antigens that I needed to take daily (I rotated them using a four-day rotation) and these items were expensive as well. After having a urine Tricothecene test, I learned that I was continually being made more ill by the mycotoxins on my clothing that had been contaminated from work. I had to give away my clothes and start over because the cross contamination of mold and mycotoxins would continue to make me ill. My mother came over and bagged up all my things. You can see pictures of this in my blog post, Environmental Illness – Not for the Faint of Heart. I also purchased a sauna for $3,500.00 that was not covered by insurance but was needed to continue my detox regimen at home.
I bought only a few clothing items because I could not afford to replace my entire wardrobe.
Dr. Rea from the Environmental Health Center – Dallas issued a letter that included a rough estimate of costs that I would incur as a result of my mold exposure to be used in court. I will include more from that list and other expenses during Part 2.
Reblogged this on sondasmcschatter.
The financial burdens you and so many of us with MCS have to deal with is incredible. The out of network treatments, the meds not approved by insurance, the supplements and therapies all add up and now for us we are embarking on selling our Arizona home to move to an area deemed safer for my issues in Colorado, Those who move or end up homeless also lose friends and support networks only to try to start over when unable to leave your home…
I also struggle with feeling bad for how much my sweet husband ends up having to to do for me, or attend things without me, the cost and sacrifice. After the conversation with the doctor he was the first one to say, “Let’s move, I will go anywhere God has for us if it makes you feel better!”
I SO love that man!!!
Deb – I am so thankful that my husband was always a “thrifty” man and found ways to be able to keep me going in my treatment. He has taken on more duties and extra responsibilities in an effort to keep me safe. He was willing to move for me as well.
I’ve been in a position where I can’t afford anything but a few supplements and organic foods. No room for anything else in my budget (and not enough for all the foods and supplements I need either, but I can’t eat any non-organic foods). And none of what I need has been covered by the health “care” plan I supposedly have.
Being housebound, you could say I have no real need of clothes, other than the ones I have on my back. Although, I must say, I do long for a change of safe, warm and clean winter clothes (I do have a couple of different things I can wear in the summer), and a washer and dryer to be able to wash them with… Clean sheets? Another dream… I’m not able to detox or wash them by hand… It has been over 5 years that I’ve been without a washer or dryer due to severe MCS, water issues, etc.
I got lucky that after a too long period between homes, my name came up for a subsidized unit specially built and maintained for people with environmental sensitivities, and that I tolerate it (some people don’t), even if it’s over a 4 hours drive away from everyone I know… or I might not be around now, as I can’t afford anything remotely safe (free of toxic chemicals and mold) on the little disability income I receive.
Thankfully, the safer housing (which includes the water filtration that I need), and very careful eating is slowly having a beneficial and healing effect. Also, for about a year now, a friend has been subsidizing some treatments with traditional Tibetan medicine, so I am finally feeling better than I had for many years. I am so very grateful that despite everything, my health is ever so slowly improving.
There’s still a long way to go because due to a lack of support or health care provisions when my health was declining, and because I was not able to access what I needed when I needed it, I ended up a lot more sick than I otherwise would have, and therefore have a lot harder journey towards recovery. Plus, there are still basics I have no access to because of financial restraints.
Like so many others…
Safe clean air, water, housing, food, clothing and health care should not be so expensive or difficult to find or receive!
It’s not right that it’s mostly only the petrochemical system of “treatments” that are covered by insurance systems, instead of prevention and safe and natural treatments that can actually heal us.
I understand where you are coming from. I have been fortunate to have been able to get the treatments and a safe place to live. I am determined to continue bringing awareness to this illness. Not only do we have to fight to get others in the medical and legal community as well as friends and family to understand, we have to be creative in financing what we need to just survive. I think there would be many jaws dropping at the cost and financial burden this illness places on so many.
Yes, and I forgot to thank you for bringing it up! (I wrote my comment after suffering an exposure last night). Your work here is very much appreciated Kathryn!
I guess I should have said something about environmental illness and “sensitivities” being an equal opportunity disability, one that can affect people in any and every income bracket.
I am aware of someone who became disabled with life threatening MCS/ES while renovating a $26 million dollar home. While I am not aware of details now, there is reason to believe that she now suffers from exposures to wireless technologies in addition to the chemicals.
I guess in addition to treatments to make our lives more bearable and reduce suffering if not completely heal us, we also need attention to prevention, which would reduce the treatment costs.
I hope this makes sense, my brain is still scrambled from some 3rd hand laundry product/fragrance contaminated eggs that I ate last night.
Linda – I am sorry for your exposure. I know how difficult it is to write after an exposure. My mind is all over the place and my fingers which are having enough difficulty since my mold exposure are even worse on the keyboard. You are definitely right about this illness being an “equal opportunity disability”. I remember seeing doctors being treated right along side of me while in Dallas.
Prevention and keeping our exposures to a minimum make a huge difference. And thank you for your kind words. I am tired and hope this makes sense as well. I wanted to get my responses done because I will be spending tomorrow morning getting an IV and may be useless for a while after.
are you ok after the sting??
Thank you. I am doing better. I credit it to being able to give myself histamine right away with a follow up injection an hour later along with Vitamin C. I think my body must be stronger because if this had happened five or ten years ago, it would have been a different story.
Wow, at least you have insurance. I have no assets, no roof over my head, have MCS/EI/osteoporosis, osteoarthritis, degenerative disc disease, celiac disease, asthma, COPD, diverticulosis, two detached retinas, 5 teeth in emergency need of repair, mobility challenged, whiplash, fractured kneecaps a 4 broken ribs from a recent street assault. My Canadian government disability pension is $890/month, which in seven years will go down to $450/month. Did I say I lost everything not just because of my illnesses but because someone has strategically destroyed my apartment and its contents. I continue to be robbed on the street of what is left of my property and in hotels/motels/B&Bs I have been staying in since the assault on me in October. The lump sum disability of $14,000 I received is all gone. Wow, you have insurance? Really? How did you get insurance? Count yourself fortunate, you could ALSO be a targeted victim of crime and have additional disabilities like me. 🙂
Olga – I had insurance before the mold exposure but slowly they began refusing most of my treatments. I do feel fortunate to be in the situation I am in. I felt the need to share these costs to bring awareness of what others are dealing with on a daily basis. Not everyone has been as fortunate as I and not everyone has a family that has been as supportive as mine has. I want the outside world to know that we are doing to our environment and what we are choosing to ignore about the effects of mold, are exacting a high price on many. We are the tip of the iceberg when it comes to environmental illness. The numbers are going to continue to spiral upwards. I have met and know many that are in similar situations.
Those of us who have gone through diagnosis and treatment for MCS know how financially draining it can be. Many insurance companies will not cover the treatments that are needed to recover. That was our experience, and we are still playing catch up. Jennie
I have a friend who has been paying off their bills a little at a time each month. Insurance still does not cover a majority of my treatments. I have been fortunate in that I have had some healing and can get by with less than before. That being said, there are things I have done without to pay the medical bills.
There is no cure for MCS/EI. Avoidance of chemical/toxic mold inhalants and living a clean (plant-based diet) chemical-free life (iincludes big pharma anything) is the only solution. I can’t believe people are injecting themselves with big pharma poisons when they are already sick. Everyone is allergic to chemical toxins. Some of us get “poisoned” quicker than others. You don’t have allergies — you have been chemically poisoned. Why all the food allergies today? Very simple. Most of our food has been genetically modified (GMO) and covered in poison chemicals, as much as 15 pesticides on one apple. You are not allergic to apples, wheat, soy, peanuts, etc. you have been poisoned by unnatural foods the human body can not digest as it does not occur naturally in nature. Only solution is to eat organic foods. People, you have been “poisoned”, not allergic to substances which do not occur naturally in nature. Any doctor who thinks they can cure you of MCS/EI is a quack and milking your insurance. Avoidance and removal from the environment which makes you sick is the only answer. You don’t have multiple chemical SENSITIVITIES — you have been POISONED! Everyone is allergic to poison. It is life threatening because it is poison and should be labelled as such. Do not take this post personally. I have been sick since the workplace poisoning in 1999. I have done extensive research since then. The real name for the medical condition should be “Multiple Chemical Poisoning” as that is exactly what MCS/EI is. Once the justice system gets up to speed with the new blood tests that measure toxic chemical residue in ones blood stream (which can go back as far as 5 decades), people will be able to launch class action lawsuits against the polluters and unethical manufacturers/governments who allow people to be poisoned by not having adequate laws in place with appropriate monitoring. You think the government is knocking on farmer Joe’s door daily to monitor his pesticide application? Not! Until this planet goes organic vegan (all natural non-GMO plant-based foods) the population will continue to be poisoned and plagued with deadly chronic degenerative diseases. Peace.
Your strength amazes me Kathryn! Thank you for all your support. I’m honored to have you as a fellow writer and friend.
Thank you Jen. That means a lot to me.
I agree eating organic and avoidance is a must but not enough for me to survive. I needed the supplements and homeopathic meds that help me to detox and manage symptoms when inadvertently exposed to poison in the form of scents on other I may come in contact with on others. There are some EI docs that truly care and offer things that help our bodies cope with this chemically induced disease without claiming to cure MCS. I often wonder if I hadn’t found my Environmental doctor when I did if I would even be alive now. His treatment does include eating organic rotation diet and building up my immune system. He also discovered my chronic leukemia and sent me to an oncologist to manage that. Kathryn your blog is a great encouragement and a place to draw us who have MCS/EI together and I really appreciate that!!
On Wed, Feb 12, 2014 at 4:44 PM, allergictolifemybattle wrote:
> Kathryn Chastain Treat commented: “Thank you Jen. That means a lot to > me.” >
Deb – I agree. If I had not found my Environmental Doctor and had a great ENT who actually found him for me, I don’t know what would have happened to me. I need to post the picture of me when I was so sick again for those who haven’t seen it in my book. As soon as I feel better.
Have no money to get well
This illness makes it difficult when so much of the treatment is not covered by traditional insurance or Medicare.
Really eye-opening. I’m lucky to have most of my expenses covered by insurance, but as I’ve read your blog I’ve been trying to cut chemicals out of my life, I’ve gotten a small taste of how expensive that can really be. I’m lucky I have the option of doing it little by little. I think more and more people are becoming aware of the chemical problem, which will hopefully result in lower prices and more common items.
Yes it is eye opening when you have treatments that work for you and the insurance does not want to pay or workers’ compensation decides that they will also no longer pay for them. I am so glad that you are eliminating chemicals. It is a lot of work but even doing it little by little can make a big difference.
I am reading your posts here & realizing that this illness I have is going to be even more of an uphill climb than I even imagined. Have been sick from my workplace beginning 11 months ago. It took me 8 months to find the source – 1 day to get proof of over 5 mil spores in my office. I’ve had tricothecenes in my urine as tested back in Dec 2013 & my sensitivities make going to work like some bizarre suicide; malls & many buildings a nightmare that takes 3-4 days to recover from. And up until 3 days ago no doctor would help or believe me e cept for for a helpful naturopath. But this amazing envir. med. dr I traveled the state to go to at last has diagnosed me as much as anyone can. Her credentials are solid & the treatment plan seems good though the costs for everything with blood tests & everything will soon exhaust our savings. This week I tell my boss what has happened; to the environment & suggest solutions for remediation before anyone else gets sick ; and advise him I can not return to my job of nearly 20 years. I hope a workers comp filing will help but I wonder if I can get thru the process. But what choice is there : I am too sick to get another job & we will need to sell our house eventually without my income let alone expenses to try to recover. My life was perfect until this previously unknown enemy called mycotoxins came in uninvited. Anyone know a good workers comp attorney in CA?
I am so sorry to here this. Your story sounds so much like mine. I am actually in CA. You can contact me through the contact button at the top of the page.
Will do – I am very grateful that you provide this amazing support site, Kathryn to others who are ill and trying to heal. I look forward to reading your book. There are good days & bad days and it helps to feel less alone here.
Thank you Periwinkle Dog and you are very welcome. It is so important to know that you are not alone.
Kathryn….I am desperately ill…..did ECD help you get your life back? I dont see this in your post.?
Hello Jennifer. I apologize for not responding to you sooner. EHCD did help me as well as additional therapies along the way. My life isn’t back to where I was pre-mold exposure but I am better than I was. At the moment I am in a downward spiral of sorts but will get myself going again.