Morgellons & Lyme Disease Nightmare
Donation protected
Update:
Currently seeing lyme doctor that is 3 hrs away. I seen her twice and spent all the money I saved from disability, about 5000 on visits, meds, scripts, travel, mri. All the meds are so expensive & the cbd oil which has been a miracle for my cognitive thinking. My body lacks the enzymes, hormones and body functions that fight all stress, physical & mental. I am positive for marcons +9. I struggle walking, standing, so much pain and I am so full of stress and am heartbroken over the total destruction of my life. I miss working, I miss people, I am lonely, isolated and currently freaking out cuz I just checked my bank account from the last round of visit, tests and meds cuz it is so hard for me to do anything cognitively & just ordered the supplements I needed my doc has me on and I couldn't believe how expensive it was. And that I saw I am out of money. So I am stressing and my body can't fight this stress. I am asking for 1 or 2 bux if you can. I am on a road to getting healthier and I just can't end it because of money. I can't go back to being that deathly ill with no brain function. I couldn't even write something like this a few months ago.
Thank you for reading.
Love to every being.
Deep gratitude for prayers,
Marcie
Original a couple years ago:
I am attempting to raise money to receive the medical care I need.
I have been abandoned by the healthcare system. I have no way to survive.
I would at least like to raise enough money to purchase supplements that I had been taking that were keeping me stable but am now unable to afford.
My hope is to finally be able to see a doctor that understands my torment & what borrelia burgdorferi is doing to my mind & body. Only a lyme literate doctor can help me and for that I need cash up front and will have to travel for care.
My every moment is filled with horrors that most of you will never be able to imagine.
I am very ill with Morgellons & Chronic Lyme diseases.
The list of symptoms I wrestle with in my every day is endless.
I struggle to function in daily life.
Things that used to be so simple, things you don't even think about, you just do them, overwhelm me in every way.
My brain takes every little step one at a time and each step needs to be thought through. It overwhelms my brain. I am good with academics but I can not think. I struggle and struggle.
Then my body hurts intensley on top of that.
I have no income, no healthcare, no doc near me that treats these diseases.
I lost my job, my home, my car.
I moved in with my mother. She is 72 and lives on social security only. She cannot take care of me.
For four years I have spent about every moment researching and studying what was happening to me.
When you have morgellons, you know it with no doubt. The details of what I deal with on a daily basis are horrific and extremely difficult to explain. Not to mention the symptoms would take at least 10 pages to explain.
It is enough to drive a person insane.
I have had no one and no where to turn during all of this because my physician & pharmacists that I tried to address the issue with all took my concerns so lightly and to the point of laughing at me, condescending me.
I could no longer speak to anyone concerning my issues.
But I have spent every moment in unbelievable torture with not a soul to help me.
My sister Susie had been the only one that knew of all the torture I had been enduring, all my screams and hopelessness along with countless tears while she was only able to watch my life and health fall apart.
Throughout my research I kept coming across Morgellons Disease being the only thing that matched. I didn't want it to be this because I read all the horror stories of people unable to find help, living years with this nightmare while the cdc insists it is delusional parasitosis.
But there was never anything else.
I know full well I am not delusional so I could no longer seek medical help, it would do no good, only get me committed.
I was suffering alone.
Until I found a foundation studying Morgellons and they have scientific proof it is real.
The fibers and other debris are apparently made of keritin & collagen & produced by our own bodies, only in a mutated way.
I have not heard of morgellons until it happened to me. You can not make this stuff up.
There are people all over the entire world with these same symptoms.
How could this be delusional?
When this reality slaps you in the face you just can't believe this is happening. It is like pure science fiction only it is real and you cannot find anyone to help you.
How can this be? This stuff I see all around me is coming from my body. This is the kind of stuff nightmares are made of only there is no waking up from this one. Never a moment of reprieve. You live in horror. Every second hurts.
I have spent many nights screaming and crying to no one to please help me and praying to God for reprieve.
I have written to our President numerous times, news agencies, the CDC, the NIH, Congress and many other people & organizations. Of course no response from anyone.
I have no hope. The healthcare system has abandoned those of us suffering. Once you mention lyme or morgellons they get all nervous and practically throw you out of the office. It is important for me to bring awareness because this is true and real and creates devastation in every aspect of life while we we are left without a way to receive medical help and since it eventually leads to complete debilitation, there is no way to live.
It is more than enough to feel there is no choice left but suicide to stop the pain & torment. No medical help, no way left to survive because functioning in daily life becomes impossible.
So many things, I hurt everywhere. Most days I have difficulty walking.
At least 5 periods during this I have felt myself dying. When you're dying, you somehow know it.
During this time I became more and more ill with issue after issue, too many to write on here but my body hurts everywhere, at times to the point I can't walk.
Light & sound often feel like they are killing me.
My teeth are falling apart, gums always hurt.
I have floaters in my eye that are always there. They get larger & more appear.
I get numbness in my feet & legs daily along with swelling.
My legs hurt unless they are elevated.
I get dizzy spells that throw me to the ground.
I thought the morgellons, the fibers or tiny hairs and the other flakes and specks of debris that come from me were causing all the other symptoms but it wasn't until I found the Charles E Holman Foundation that things began making sense.
I am in contact with the head of the foundation who is a nurse and another nurse volunteer from the CEHF.
They told me that Morgellons is related to Chronic Lyme. They said read the symptoms and they would bet I have most of those. Yes, I do. All the neurological issues, pains, eye issues, stomach & bowel issues, teeth issues, the severe head pain that feels like my head is being struck with a hammer & chisel, days I cannot walk, days I cannot wake up.
And all the anxiety, irritability & loss of patience that goes along with it. The most frightening is what it is doing to my brain.
A couple yrs ago I made a random note stating... I am not slow but something is making my brain slow and I feel it. I know it is happening but I cannot stop it. Since then it has gotten so much worse. I am unable to figure things out, make decisions, fill out paperwork, forms, applications etc. It is to the point that absolutely everything I try to do is beyond difficult & stressful to the point I am rarely able to accomplish anything.
They told me to get a 60x lighted handheld microscope which I did. On their site there are pictures of slides of what to look for.
It took me about 3 weeks to get the hang of it and to see past the hair on my skin. When I learned to properly focus to under my skin I began seeing the squiggly things, the specks under my skin. I was horrified but relieved at the same time that I finally have proof.
Unfortunately this proof gets me nowhere.
The CEHF is diligently researching Morgellons but they rely solely on donations and the researchers have day jobs & volunteer their time & expertise. It is a slow process. They have proven beyond doubt it is real and caused by a spirochete bacteria called borrelia burgdorferi. It is practically impossible to rid of and is the same bacteria in lyme disease patients. Now because the CDC continues to deny that chronic lyme exists with all the proof out there, we are still unhelped by the medical community.
There are a very few doctors that understand borrelia burgdorferi and the tremendous harm it creates in the human body.
If a doctor treats you for this they risk losing their license.
Now what in the world is happening with modern medicine that they go against their Hippocratic Oath & leave extremely ill patients without medical care?
My only hope is to find a lyme literate doctor that risks his career to help us.
Borrelia Burgdorferi can enter the brain in as little as 48 from original infection.
You feel like you have the worst flu you ever had, the kind you hurt all over and you are only able to lay in bed undisturbed, too sick to even think about doing anything. But it never goes away. Our immune systems get shut down by the bacteria and we also get every illness we are in contact with and they linger, intensify again, very difficult to get better.
But the flulike misery never leaves. Only goes on levels of extremely horrible to I can do a little something today.
I wrote a 9 page letter to my doctor about everything in detail. Her response was she is unable to go against cdc protocols although she does believe there are diseases out there that need to be researched.
In the meantime, once I had proof from my microscope I began the process of disability.
For 8 months I struggled through loads of paperwork, going to their doctors, numerous phone calls only to be denied. Medicaid denied me because they used disability's determination. In the meantime I used up the rest of my 401k & have nothing to survive on.
I don't even have means to purchase toothpaste, shampoo and all that.
I have studied borrelia and numerous alternative medicines. I haven't been able to have bloodwork done since I lost my job & have been uninsured but the last few times bloodwork was done showed I was low on numerous things. Before all this my bloodwork was always near perfect.
So I have had myself on supplements I know I was low on, some were dangerously low.
And alternative medications to save my life because that is all I have.
I have studied hard, tried many different things and had myself on the best protocol possible.
Most of my money has gone towards medications. I have also been paying out of pocket for my prescription meds.
Well I no longer can pay for any medication.
Borrelia is very complex. It normally is a long spirally bacteria that is capable of entering every organ, every part of the body, brain & nervous system.
But it has many tricks up it's sleeve. It is able to transform into a round body, gather other borrelia plus any other bacteria, virus, fungi it can and create a biofilm around the mass. Antibiotics are unable to penetrate this biofilm so it hides out until such time conditions are in their favor and they break through the biofilm and commence to creating havoc in every part of the body.
Another concern is when you do kill this bacteria it can create horriffic die off symptoms, I believe the shortened term is herx. Now I have found some ancient herbs that are said to be able to penetrate these biofilms and I want to get on these but have no money to purchase them. Plus, without being monitored by a physician, this can be devastating to the body, even deadly.
I am in a mess.
I am lost.
My brain is in bad shape.
I deal with horrors that aren't even possible for you to imagine.
I have now located 3 doctors in all of SC that will treat chronic lyme disease but none are near me, I will have to travel and even if I do get insurance, they don't take it because insurance companies do not pay anyway. The cdc says it is not real so they will not pay. It is my opinion that insurance companies are paying off the cdc.
To see a doctor that I need, it is at least between $300 & $1000 for the first visit alone and until stable you may need to go monthly. This does not include medications.
I encounter dilemma after dilemma.
Disability does not recognize Chronic Lyme or Morgellons because of the cdc.
A lawyer won't represent me because I do not have medical proof.
Without insurance, who can pay for scans, xrays, blood tests, etc.
And the kicker...
The test for borrelia burgdorferi is highly flawed and highly inaccurate. It is proven to be accurate less times than it is inaccurate.
On top of that, the cdc only uses 1 marker to determine a positive test. There are many markers being tested and all the rest may be positive but they do not count the others.
This doesn't even hit the half of what I am up against.
It is all too overwhelming.
I have no hope.
I have nowhere to turn.
I just want to get better.
That is not too much to ask.
Thank you for reading.
Through so many tears,
Marcie Nichols
This is a link to my journal. Writing helps to retain a bit of my sanity.
www.caringbridge.org/visit/slippingaway
my journal
Currently seeing lyme doctor that is 3 hrs away. I seen her twice and spent all the money I saved from disability, about 5000 on visits, meds, scripts, travel, mri. All the meds are so expensive & the cbd oil which has been a miracle for my cognitive thinking. My body lacks the enzymes, hormones and body functions that fight all stress, physical & mental. I am positive for marcons +9. I struggle walking, standing, so much pain and I am so full of stress and am heartbroken over the total destruction of my life. I miss working, I miss people, I am lonely, isolated and currently freaking out cuz I just checked my bank account from the last round of visit, tests and meds cuz it is so hard for me to do anything cognitively & just ordered the supplements I needed my doc has me on and I couldn't believe how expensive it was. And that I saw I am out of money. So I am stressing and my body can't fight this stress. I am asking for 1 or 2 bux if you can. I am on a road to getting healthier and I just can't end it because of money. I can't go back to being that deathly ill with no brain function. I couldn't even write something like this a few months ago.
Thank you for reading.
Love to every being.
Deep gratitude for prayers,
Marcie
Original a couple years ago:
I am attempting to raise money to receive the medical care I need.
I have been abandoned by the healthcare system. I have no way to survive.
I would at least like to raise enough money to purchase supplements that I had been taking that were keeping me stable but am now unable to afford.
My hope is to finally be able to see a doctor that understands my torment & what borrelia burgdorferi is doing to my mind & body. Only a lyme literate doctor can help me and for that I need cash up front and will have to travel for care.
My every moment is filled with horrors that most of you will never be able to imagine.
I am very ill with Morgellons & Chronic Lyme diseases.
The list of symptoms I wrestle with in my every day is endless.
I struggle to function in daily life.
Things that used to be so simple, things you don't even think about, you just do them, overwhelm me in every way.
My brain takes every little step one at a time and each step needs to be thought through. It overwhelms my brain. I am good with academics but I can not think. I struggle and struggle.
Then my body hurts intensley on top of that.
I have no income, no healthcare, no doc near me that treats these diseases.
I lost my job, my home, my car.
I moved in with my mother. She is 72 and lives on social security only. She cannot take care of me.
For four years I have spent about every moment researching and studying what was happening to me.
When you have morgellons, you know it with no doubt. The details of what I deal with on a daily basis are horrific and extremely difficult to explain. Not to mention the symptoms would take at least 10 pages to explain.
It is enough to drive a person insane.
I have had no one and no where to turn during all of this because my physician & pharmacists that I tried to address the issue with all took my concerns so lightly and to the point of laughing at me, condescending me.
I could no longer speak to anyone concerning my issues.
But I have spent every moment in unbelievable torture with not a soul to help me.
My sister Susie had been the only one that knew of all the torture I had been enduring, all my screams and hopelessness along with countless tears while she was only able to watch my life and health fall apart.
Throughout my research I kept coming across Morgellons Disease being the only thing that matched. I didn't want it to be this because I read all the horror stories of people unable to find help, living years with this nightmare while the cdc insists it is delusional parasitosis.
But there was never anything else.
I know full well I am not delusional so I could no longer seek medical help, it would do no good, only get me committed.
I was suffering alone.
Until I found a foundation studying Morgellons and they have scientific proof it is real.
The fibers and other debris are apparently made of keritin & collagen & produced by our own bodies, only in a mutated way.
I have not heard of morgellons until it happened to me. You can not make this stuff up.
There are people all over the entire world with these same symptoms.
How could this be delusional?
When this reality slaps you in the face you just can't believe this is happening. It is like pure science fiction only it is real and you cannot find anyone to help you.
How can this be? This stuff I see all around me is coming from my body. This is the kind of stuff nightmares are made of only there is no waking up from this one. Never a moment of reprieve. You live in horror. Every second hurts.
I have spent many nights screaming and crying to no one to please help me and praying to God for reprieve.
I have written to our President numerous times, news agencies, the CDC, the NIH, Congress and many other people & organizations. Of course no response from anyone.
I have no hope. The healthcare system has abandoned those of us suffering. Once you mention lyme or morgellons they get all nervous and practically throw you out of the office. It is important for me to bring awareness because this is true and real and creates devastation in every aspect of life while we we are left without a way to receive medical help and since it eventually leads to complete debilitation, there is no way to live.
It is more than enough to feel there is no choice left but suicide to stop the pain & torment. No medical help, no way left to survive because functioning in daily life becomes impossible.
So many things, I hurt everywhere. Most days I have difficulty walking.
At least 5 periods during this I have felt myself dying. When you're dying, you somehow know it.
During this time I became more and more ill with issue after issue, too many to write on here but my body hurts everywhere, at times to the point I can't walk.
Light & sound often feel like they are killing me.
My teeth are falling apart, gums always hurt.
I have floaters in my eye that are always there. They get larger & more appear.
I get numbness in my feet & legs daily along with swelling.
My legs hurt unless they are elevated.
I get dizzy spells that throw me to the ground.
I thought the morgellons, the fibers or tiny hairs and the other flakes and specks of debris that come from me were causing all the other symptoms but it wasn't until I found the Charles E Holman Foundation that things began making sense.
I am in contact with the head of the foundation who is a nurse and another nurse volunteer from the CEHF.
They told me that Morgellons is related to Chronic Lyme. They said read the symptoms and they would bet I have most of those. Yes, I do. All the neurological issues, pains, eye issues, stomach & bowel issues, teeth issues, the severe head pain that feels like my head is being struck with a hammer & chisel, days I cannot walk, days I cannot wake up.
And all the anxiety, irritability & loss of patience that goes along with it. The most frightening is what it is doing to my brain.
A couple yrs ago I made a random note stating... I am not slow but something is making my brain slow and I feel it. I know it is happening but I cannot stop it. Since then it has gotten so much worse. I am unable to figure things out, make decisions, fill out paperwork, forms, applications etc. It is to the point that absolutely everything I try to do is beyond difficult & stressful to the point I am rarely able to accomplish anything.
They told me to get a 60x lighted handheld microscope which I did. On their site there are pictures of slides of what to look for.
It took me about 3 weeks to get the hang of it and to see past the hair on my skin. When I learned to properly focus to under my skin I began seeing the squiggly things, the specks under my skin. I was horrified but relieved at the same time that I finally have proof.
Unfortunately this proof gets me nowhere.
The CEHF is diligently researching Morgellons but they rely solely on donations and the researchers have day jobs & volunteer their time & expertise. It is a slow process. They have proven beyond doubt it is real and caused by a spirochete bacteria called borrelia burgdorferi. It is practically impossible to rid of and is the same bacteria in lyme disease patients. Now because the CDC continues to deny that chronic lyme exists with all the proof out there, we are still unhelped by the medical community.
There are a very few doctors that understand borrelia burgdorferi and the tremendous harm it creates in the human body.
If a doctor treats you for this they risk losing their license.
Now what in the world is happening with modern medicine that they go against their Hippocratic Oath & leave extremely ill patients without medical care?
My only hope is to find a lyme literate doctor that risks his career to help us.
Borrelia Burgdorferi can enter the brain in as little as 48 from original infection.
You feel like you have the worst flu you ever had, the kind you hurt all over and you are only able to lay in bed undisturbed, too sick to even think about doing anything. But it never goes away. Our immune systems get shut down by the bacteria and we also get every illness we are in contact with and they linger, intensify again, very difficult to get better.
But the flulike misery never leaves. Only goes on levels of extremely horrible to I can do a little something today.
I wrote a 9 page letter to my doctor about everything in detail. Her response was she is unable to go against cdc protocols although she does believe there are diseases out there that need to be researched.
In the meantime, once I had proof from my microscope I began the process of disability.
For 8 months I struggled through loads of paperwork, going to their doctors, numerous phone calls only to be denied. Medicaid denied me because they used disability's determination. In the meantime I used up the rest of my 401k & have nothing to survive on.
I don't even have means to purchase toothpaste, shampoo and all that.
I have studied borrelia and numerous alternative medicines. I haven't been able to have bloodwork done since I lost my job & have been uninsured but the last few times bloodwork was done showed I was low on numerous things. Before all this my bloodwork was always near perfect.
So I have had myself on supplements I know I was low on, some were dangerously low.
And alternative medications to save my life because that is all I have.
I have studied hard, tried many different things and had myself on the best protocol possible.
Most of my money has gone towards medications. I have also been paying out of pocket for my prescription meds.
Well I no longer can pay for any medication.
Borrelia is very complex. It normally is a long spirally bacteria that is capable of entering every organ, every part of the body, brain & nervous system.
But it has many tricks up it's sleeve. It is able to transform into a round body, gather other borrelia plus any other bacteria, virus, fungi it can and create a biofilm around the mass. Antibiotics are unable to penetrate this biofilm so it hides out until such time conditions are in their favor and they break through the biofilm and commence to creating havoc in every part of the body.
Another concern is when you do kill this bacteria it can create horriffic die off symptoms, I believe the shortened term is herx. Now I have found some ancient herbs that are said to be able to penetrate these biofilms and I want to get on these but have no money to purchase them. Plus, without being monitored by a physician, this can be devastating to the body, even deadly.
I am in a mess.
I am lost.
My brain is in bad shape.
I deal with horrors that aren't even possible for you to imagine.
I have now located 3 doctors in all of SC that will treat chronic lyme disease but none are near me, I will have to travel and even if I do get insurance, they don't take it because insurance companies do not pay anyway. The cdc says it is not real so they will not pay. It is my opinion that insurance companies are paying off the cdc.
To see a doctor that I need, it is at least between $300 & $1000 for the first visit alone and until stable you may need to go monthly. This does not include medications.
I encounter dilemma after dilemma.
Disability does not recognize Chronic Lyme or Morgellons because of the cdc.
A lawyer won't represent me because I do not have medical proof.
Without insurance, who can pay for scans, xrays, blood tests, etc.
And the kicker...
The test for borrelia burgdorferi is highly flawed and highly inaccurate. It is proven to be accurate less times than it is inaccurate.
On top of that, the cdc only uses 1 marker to determine a positive test. There are many markers being tested and all the rest may be positive but they do not count the others.
This doesn't even hit the half of what I am up against.
It is all too overwhelming.
I have no hope.
I have nowhere to turn.
I just want to get better.
That is not too much to ask.
Thank you for reading.
Through so many tears,
Marcie Nichols
This is a link to my journal. Writing helps to retain a bit of my sanity.
www.caringbridge.org/visit/slippingaway
my journal
Organizer
Marcie Evanosky Nichols
Organizer
Lexington, SC
Begin your fundraising journey
