Homelessness in the Lyme Community

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Lyme Disease and Homelessness

An ignored aspect of Lyme disease.

Tonight one of  my friends, Jeri Dobson, who just started a non profit called, “Partners in Lyme”  wrote me asking me what the statistics were on Lyme and suicide and Lyme and Homelessness, as she wants to help those in need. It made me think about how there are no stats for either because noone is caring enough to study our community and what is happening to us. This is just sad. Since I already wrote about Lyme Disease and Suicide I thought tonight I would tackle homelessness.

I know personally a handful of people who are homeless right now  at this moment, living in tents with kids, living with no electricity or water, living in their cars. Some are bouncing from house to house relying on friends and family members to take them in for a night or two before they either end up in a cheap hotel or out on the streets. This is a crime. Noone should be treated like this, especially because they are sick.

At the end of this article will be patient stories of how and why they became homeless. Feel free to skip past my ramblings of “why” people become homeless and read their stories. Make sure to read the comment section too.

There are a couple reasons for becoming homeless when you have Lyme Disease.

  1. Lack of funds. Of course this is the most obvious one. When you are sick with Lyme disease you bounce from doctor to doctor, getting test after test trying to figure out what’s wrong with you. Usually you have depleted all funds and likely lost your job due to illness, before you ever even get diagnosed which can take months or even years. Once you get diagnosed it’s not much easier. Patients have to seek out “Lyme literate doctors,” as most mainstream doctors won’t treat chronic Lyme.  Lyme doctors usually do not take insurance and are very expensive because insurance will not cover their long term treatments thanks to the IDSA and CDC guidelines stating that Lyme is easily detected and cured with  a couple week of antibiotics.So to sum it up,  Lyme disease patients are having to seek out  Lyme specialists and paying out of pocket for expensive treatments protocols that go on for  months and years.  And this is not to even mention the bills that pile up while you are having to take time off work, pay your normal daily living bills, and take care of your children and family. If you want to see how Lyme patients are financially hit, check out all these fundraisers. 

Click on “View Results” at the bottom of the poll to see how many votes.

2.  Rejection from family, friends and spouses: Because Lyme disease is such a misunderstood disease, Lyme patients tend to lose those around them. Spouses give up on us, not understanding the mish mash of symptoms that we experience, one day being up and the next day being down. They start to question if we are really sick. Doctors say it’s all in our heads, making us look like hypochondriacs. We get accused of Munchhausen Syndrome if our children are sick. Family members start not trusting us. Friends drop off one by one as they get sick of hearing about Lyme, leaving us feeling abandoned.

People are used to diseases either getting cured by mainstream doctors, controlled with meds like how Diabetes can be controlled with insulin, or dying. Noone believes you can be “this” sick and still survive several years. Spouses, family members and friend’s lives don’t stop because our life has. They want to travel, they want to go to parties, they want to have holidays with family, the stress of not being well enough to be reliable and leave the house often leads to broken relationships.

Eventually you have noone to turn to. Your wallets are depleted, you are still sick and you have noone.  We asked Lyme patients is they feel isolated from Lyme and here is there answers. 

Click on “View Results” at the bottom of the poll to see how many votes.

3. Multiple Chemical Sensitivity:  This is one factor that people out of the Lyme disease community might not understand.  Lyme disease leads to conditions such as sound sensitivity, light sensitivity, and chemical sensitivity Things that healthy people don’t notice around them become intolerable to us. Many Lyme patients can not be around perfumes, colognes, candles, cleaning sprays, or anything that has strong odors. Fluorescent lights produce seizures or seizure like feelings and headaches. A simple sound like breathing or someone walking across the room can throw you into a panic attack. Sound causes pain in our ears and heads, almost like someone is blasting bass or yelling in a  microphone next to your ear. We have to live in a “clean” home and it is unimaginably hard to find one, especially n the financial distress we are mostly all under.  Read more about MCS here. 

Click on “View Results” at the bottom of the poll to see how many votes.

4. Mold:  Mold and Lyme disease just do not mix. Time after time we hear stories of how sick someone got after moving into a home with mold. If you have Lyme disease your immune system is already caput, but you add mold into the  mix and it can be deadly.  You never really notice how we are surrounded by mold, in our house, in our yards, in our cars… until you get Lyme disease. Most of us can walk into a room and we know instantly if there is mold present. We become so sensitive to it. Read more about the affects of mold on Lyme patients.

Click on “View Results” at the bottom of the poll to see how many votes.

These are just a few of the reasons some of our dear Lyme friends are becoming homeless. We would like to collect personal stories to add to this post. If you have experienced homelessness due to Lyme disease and would like to share your story please contact us here or for those who know me just contact me on Facebook. We will add your story here and any links to fundraisers you are doing. ♥

Article written by Lisa Hilton

Click on “View Results” at the bottom of the poll to see how many votes.

Patient Stories

“I did not have any assistance, no money coming in too ill to work, I had spent everything I had, I cashed in my CD, I had spent my savings on out of pocket expenses, MRI’s, countless doctor appointments that did nothing and refereed me to someone else, ER visits. (Long story short, ) I knew the funds would not last, I had enough for a plane ticket to another country, where I knew some people there. When I was there, I soon found myself homeless, I don’t remember all the particulars, which is good, but I remember my feet being really dirty.”
Keep Reading Tara R’s Story Here.

“I started seeking diagnosis, testing and treatment. I filed for workers compensation but was denied for 2 reasons. (1st) too much time had past, (2nd) I could prove the tick that bit me came from the injured deer. Fast forward to May 2015. I could no longer work. I have always lived on my own, I’m not married. I could no longer afford basic living expenses, not to mention medical expenses without employment I had no insurance.”
Read Shay’s Full Story Here.

Sarah’s Fundraiser to find a home.

Spread Lyme Disease Awareness and Help Support a Lyme Patient.

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19 thoughts on “Homelessness in the Lyme Community”

  1. Lost my home in 2012. At that point again. It’s either let house go so I can afford treatments or keep getting more ill. No treat,nets past 2 years due to lack of funds. Many of us have to live in our cars in able to afford treatments. It’s a lifelong battle once late stages for most people. We need a real cure

  2. I disagree with Lisa P’s comment, and agree that likely the choice was made to live outside. That is often the only thing that will help mold patients, even those who are adequately funded, whose symptoms are extremely similar to Lyme symptoms. We still suffer some of the same consequences as Lyme patients, of losing friends, having family tell us to just get our act together, loss of job, spending our resources trying to find a cure, and many end up living in really horrible circumstances. But they still have to 100% avoid mold, so living in an old van is out of the question. I’m pretty sure, based on people I know, that many Lyme patients are also mold patients and do not know it because of the extreme difficulty in getting that properly diagnosed, also.

    I will throw in that chlorine dioxide, used properly and over sufficient time, has reversed Lyme in people who stay the course. It costs about $20 a month or less, and is available as a water purifier over the ‘net.

    I think the article is a great contribution.

    1. Wow Mystic, I have never heard of chrlorine dioxide but will look into that. Thank you for telling us what has worked for you, that is very helpful, especially when it doesnt cost a fortune. Thank you.

  3. I lost my home when first ill Icould not work. I moved into a van and have been on the road now over 10 years and do not class myself as homeless I have a nice home it is on my truck. My main worry is I am advanced and cannot drive when I want. I worry if I fail my medical review to keep a licence. I have nowhere to park or go on bad days. But I have a nice van but have trouble keeping it clean I often have mould and mice and struggle with everything. I started a business after onset and follow a travel circuit and have lots of lovely clients as I travel who help me a lot but know I am deteriorating and cannot keep it up.

  4. As a mold avoider who has spent a considerable amount of time living in a tent and then a long time living in an RV, I feel uncomfortable with the tone of this article.

    The article seems to be taking the position that “homelessness” is the worst thing in the world that can happen to someone.

    This attitude is sort of a problem in itself, in my opinion. Not that I think that needing to avoid mold to the extent that I did ever is fun, but the stigma that very often goes along with homelessness makes things even worse.

    I think it would be better if those in this community acknowledged people who are trying to get better through living in tents, cars or RV’s as being brave (rather than pitiable) and thus supported them in their efforts (rather than suggesting that what they are doing is a problem).

    I like Jill Neimark’s take on the topic a lot better than the one suggested here, for instance.

    https://aeon.co/essays/environmental-illness-made-me-too-sick-to-live-inside

    Lisa Petrison

    1. Since I have people reaching out to me everyday asking for help and begging for funding I totally disagree with your position. These people are not enjoying their “homeless” state and are suffering due to it. They tell me they are feeling isolated, have little to no contact with others.. and are desperate for help. Children are being taken away from their parents and they are not getting medical care.

      Maybe you need to read through some of the other comments on this thread.

      It sounds to me like you made the “choice” to live somewhere other then inside of a house. IF that is the case that is way different then becoming homeless due to illness sucking up all your funds. It is two different things. I have a cousin who is a backpacker who enjoys it. That is his choice to not settle down anywhere, that is different from when i had to live out of my car because I simply had no money and was too sick to work. And none of my homeless Lyme friends are living in an “RV.” They are living in broken down cars and little tents. I would not even consider living in an RV homeless.

      This article is intended to bring awareness to the atrocities that Lyme disease causes to those who suffer from it. Homelessness is one of those atrocities amongst many others. I will not act like its a pleasant side affect of Lyme.

      That may be a fine position for you to take.. for YOU. But for my friends who have kids living in tents and cars, I assure you it is not their choice and they are not trying to just be brave. They are simply out of choices and money. And mold is only part of it if you had read the whole article maybe you would see Im trying to help people, not judge them, not hurt anyone. There is bunch of reasons people end up homeless. Maybe living in a car is good for you, but like i said it is not ideal for others. If you want to write a different slant on being homeless, then go right ahead. This is my view and we all have our own experiences and views.

      1. While I agree that homelessness can be a major problem for many people with Lyme for all the reasons cited in this article, I feel that there is one important issue that has been wholly left out of the article as well as the comment made by the author above.

        The author seems to be making the assumption that there are just two possibilities here: either that people want be camping because it is a “choice” or that camping is something that people are doing against their will because they don’t have other options.

        What is not mentioned in this article are the many, many people who have decided that temporarily pursuing a life of “homelessness” may be worthwhile for them as a means of trying to improve their health, regardless of whether they could afford to live in a home without an obvious toxic mold problem.

        Not because (like the author’s presumably well cousin) they enjoy camping for its own sake, but because they are using it as a therapeutic intervention. In the way that, say, antibiotics are used as a therapeutic intervention.

        And many people have reported that after a continued long period of “homelessness,” they have gotten permanently better. Meaning better enough to be able to live in a building again with many fewer health issues.

        I am in contact with hundreds of people pursuing “homelessness” for this reason, and I don’t feel that this article acknowledges their situation. The article as written seems to me to provide a misleading summary of their perspective – problematic especially since mold is brought up in the article.

        I don’t feel that the pursuit of homelessness as a therapeutic intervention is a “choice” any more than taking antibiotics is a “choice.” No one would be doing either of those things if they didn’t feel that they needed them.

        But I also do not feel that either taking antibiotics or pursuing tent camping as a therapy should be viewed as a “problem” to be “fixed.” For some people, these things are valid therapeutic interventions, and those people who are pursuing them are worthy of support with regard to their determination and bravery.

        And so I think it would have been nice if the perspective of these people had been acknowledged in this article, along with the alternative perspectives of the other kinds of people described.

        Once again, I suggest that reading Jill’s article may be helpful to better understand this alternate perspective that is of relevance to some people (though I agree not all people) with this sort of illness.

        Reading the book “A Beginner’s Guide to Mold Avoidance” (available for free at the link below) also may be helpful with regard to understanding this perspective.

        Lisa Petrison, Ph.D.
        Paradigm Change
        http://www.paradigmchange.me/avoidance/

        1. I am dealing with the death of my step mom today and so I am going to sum up my feelings for all your comments quickly here. You are talking about a group of people that I am simply not talking about. You are missing the whole point of my article obviously and Im not doing a back and forth with you. I have other things to spend my time on. You are talking about a whole different subject and NOT what this article is about. Mold is an issue in the Lyme community… and that is only one aspect of this article.

          I am very obviously writing about the people who don’t want to be living in a tent. This is a short article.. a blog post about people who dont want to be homeless. This is not intended to be an article on every single aspect of homelessness and mold treatments that there are…I think most people realize this. It is also not an article about, “homelessness as a therapeutic intervention.” Again that is a whole other subject. It would be a fantastic article for someone to write for sure, but that is NOT what this article is about. You say you speak to hundreds of people a day that are in that position so you should write the article, the people I work with are not happy with their state of homelessness and a are desperately seeking funds to get out of their situation.

          If you would like to do an article regarding Mold patients who are living in tents or rvs, so as to better their health, you are more then welcome to do a guest post on here. But the intent of this article is for those who are not living homelessly for the intent on getting better, it is for those who have no choice and are living in bad circumstances because of Lyme disease.

          1. It’s obvious she’s promoting her book. It’s rather rude for her to comment all this on your article. For ph.D she surely fits in with most western medical attitudes. People who have no money could never fathom what others who ran out of resources deal with. Lisa, don’t let the dark attitudes get you down. Your bright light it’s one we ALL need to stay lit for each other :)))

          2. you’re an idiot. i don’t care if you have a ph d., your level of understanding and wisdom in reading this and “getting” it is so low that i pray for your soul when you pass.

            look within a little further than your overactive mind — creating hypotheticals and thinking broadly when these are individual people who lose their only comfort life as their health has become untenable.

            you’re a fucking tool.

            i used to be a lot nicer, and even emotionally held up an abusive person for a while. it is people like you making judgments instead of listening to others’ words that make the world a worse place.

            try to locate that part of you below the neck, below the thinking head.

            it’s called a heart

          3. I’m currently homeless have Lyme disease and all female and people just think this I’m supposed to have sex with everybody it sucks I’m 55 years old

    2. Hi there…

      As a lon-time sufferer of chronic Lyme & 5 c0-infections, the wife and mom of other patients with this, what I feel is sick at my stomach, and worried about you. Disgusted with a medical system that lets it come to this. My husband was out of work for 18 mos so we lost our home, and our farm. Luckily, mom was able to take us in, but there’s mold here. Sadly. If it helps, the rest of us Lyme patients have done and gone thru things we’d NEVER have expected. There is NO stigma among us….lean on us.

      Karen

    3. I also speak to many people who, not by choice have lost their home and have nowhere to go. If they are in a tent, staying in a motel, sleeping on someone’s couch etc…no it is not the worst thing because suffering illness is the worst thing. Becoming homeless or having to sleep outside or move is because of the illness. None of these people want that. Some have committed suicide because of it. They got sick, suffering they got sicker with mold issues and many other issues and go dr to dr to be treated terrible. Spend tons of money, lose their ability to work, friends/family dont get it and turn their backs and some become homeless. It is bad enough being isolated, being sick every single day but then to also feel even sicker or get even sicker due to mold, chemicals or whatever in the place they live is typically what has happened. The article is not putting anyone down or criticizing them, its bringing to light what many times has happened to people. Yes, it is terrible and no it is not by choice, they have no choice.

  5. I am homeless BC Lyme has made me so sensitive to mold I can’t live in most apartments and can’t buy a house. My husband and I are working on buying a cargo trailer to convert into a home.

  6. I lost everything because of Lyme.
    I am now married to a man I met at a clinic for Lyme ladt year. Still in treatment that is costly over our heads and fighting. Trying to start up my art for treatment funds and to help others.
    WWww.artrageous.info for my story.

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