Marie's Medical Recovery Fund
Donation protected
Hi All,
This is something that has been suggested and have been encouraged to do by many wonderful friends for quite a while. I have been putting it off for many months, hoping another way would present, but now I’ve had to humble myself & take a risk. So as incredibly difficult as it is to reach out this way, for this stubborn Irish woman, & ask for help, I finally surrender, so here goes:
Some of you know my medical history, for those who don’t I’ll be as concise as possible. 25 yrs. Ago, I was hit with a sudden onset of an extreme Flulike state that after many months did not alleviate, which started the round of Drs. & the yrs. of challenge.
I was ultimately diagnosed with Chronic Fatigue Syndrome & Fibromyalgia. A few yrs. Later it was called ME (Myalgic Encephalamyelitis). I was basically mostly bed-ridden with symptoms of debilitating fatigue, joint & muscle pain, brain fog, cognitive impairment and Flulike symptoms everyday. I had to quit work, school & almost all activity, except therapy, support groups, spiritual communites and the search for cure with protocols from specialists for this auto immune illness. It wasn’t long before I applied for disability which took quite a long time, so I was on welfare for a couple of yrs.
The only treatment at for CFS/ME was Provigil (for narcolepsy) & sedatives. Basically, kept awake all day & then knocked out at night. I lasted not even a wk. I felt insane. Wide awake & feeling sick was not a way I could live.
I pursued alternative methods, read everything about CFS/ME and ultimately after numerous protocols with multiple practitioners, the only thing that made a real difference was organic whole food as medicine, which took away the body pain. The rest of the symptoms, although reduced, are still very real & I’m still not able to work even P/T without going into severe flulike symptoms.
I’ve survived so far only with great support from all my spectacular loving friends & family (my dear brother George!) & all my spiritual communities & practices. All helping me especially when I would sink into despair & couldn’t make it through a month financially. All have helped me to hold onto faith & new lessons for living & learning everyday. I also came through 2 bouts of stage 2 cancer with so much love & help & am now clear for 15 yrs.
I’m so fortunate to have gotten affordable Housing in a Green Building almost 8 yrs. ago in a housing lottery, making it possible to live in an apt. in NYC. I'm still on disability & do some very P/T supplemental work. Conventional Dr’s have nothing to offer except painkillers, which isn’t the issue.
Just this last yr. & a half, I took a downward turn & felt like I did in the early stages of the first 5 years, therefore have been less able to do most things, except what’s essential and became once again in bed mostly. I do still push a bit with caffeine (green tea) & occasional meds. when I need to, in order to attend whatever helps most. When I do too much or expend a lot of energy, It takes days to recover from the intensified symptoms. It’s difficult to explain, these Auto Immune illnesses are called “the invisible diseases” as most people look ok when able to be out & about.
~~~~
This last yr. a good kind friend turned me on to a book about Auto Immune illnesses by a research scientist MD & the possibility of some diagnoses actually being misdiagnosed & possibly being undiagnosed Chronic Lyme Disease. I thought no! I’ve been tested numerous times over the yrs. After reading that & a couple of other *books, it turns out, with proper bloodwork, I have numerous co-infections related to undiagnosed Lyme Disease that are not detected in standard Lyme testing, that only scans for 2 strains. Finally a REAL diagnosis!
Turns out there’s over 100 strains in the NorthEast. Chronic Lyme disease is becoming pandemic with undiagnosed untreated ongoing co-infections ie. Bartonella, Babesia etc… & numerous other complications leading to many body systems breaking down. Now for the first time in Years I feel so hopeful for REAL recovery following this new direction in protocols with extraordinary people who've walked this path!!
I’m working with 1 Homeopath practitioner who is amazing & has nearly the same story as me, and has now written 2 books about her journey & a practical guide*. She was also mostly bed-ridden for 10 yrs. & is now almost 100% well. It took a few yrs. to address & eliminate all the damage related to years of misdiagnosis.
~~~~
This is where I’m in need, as I do need to work with an LLMD (Lyme Literate Medical Doctor). The FDA hasn’t approved the new paradigm saying that Lyme disease is cured with Doxy (antibiotic), which is true for many diagnosed early in the initial stages. There are thousands having been on this regimen numerous times who are still chronically ill & now have hope, tools & a real method for a way out…
I’m already a bit better working with the homeopath who is now well & have to work with an LLMD to maintain proper ongoing bloodwork & treatment, while eliminating each layer of infection, which I’m told with long term patients can take a few yrs. but progress all along.
The trouble is the protocols I’m now on & need are all out of pocket, since most LLMD’s are not covered by insurance & the ones who are, don’t accept my Medicaid based insurance.
So I’m projecting the amount I might need for a least a yr. hopefully while waiting for the CDC & FDA stepping up & approving the latest science, so Insurance will cover these protocols. (hopefully!!) I’m figuring in the Dr. visits, (2 practitioners) ongoing bloodwork, therapies, supplements, homeopathy, herbs & any drugs needed in the sum.
In the meantime, I’m hoping to, at some point to be able to either pay it forward or offer some of my services to any of you, like counseling & creative skills, when well enough.
This is so hard for me to put all of it out there, knowing that there are so many worthy appeals. I’m beyond appreciative for any support. I do know & keep being reminded by all you wondeful beings, that what we can’t do alone we can do together.
I have the upmost respect , admiration and love for all who are in my friends list! please feel free to ask any questions or offer any leads you'd like…
Thank you with all I have! Infinite Metta Blessings and Love to you all…
With Deepest Gratitude and Love,
Marie
** The Books I referred to changing lives are:
1. “Why Can’t I Get Better”: Solving the Mystery of Lyme & Chronic Disease
By, Richard Horowitz MD, LLMD
2. “Out of the Woods”: Healing from Lyme Disease
By, Katina Makris CCH, CIH
3. “Auto Immune Illness & Lyme Disease Recovery Guide”
By, Katina Makris CCH, CIH
This is something that has been suggested and have been encouraged to do by many wonderful friends for quite a while. I have been putting it off for many months, hoping another way would present, but now I’ve had to humble myself & take a risk. So as incredibly difficult as it is to reach out this way, for this stubborn Irish woman, & ask for help, I finally surrender, so here goes:
Some of you know my medical history, for those who don’t I’ll be as concise as possible. 25 yrs. Ago, I was hit with a sudden onset of an extreme Flulike state that after many months did not alleviate, which started the round of Drs. & the yrs. of challenge.
I was ultimately diagnosed with Chronic Fatigue Syndrome & Fibromyalgia. A few yrs. Later it was called ME (Myalgic Encephalamyelitis). I was basically mostly bed-ridden with symptoms of debilitating fatigue, joint & muscle pain, brain fog, cognitive impairment and Flulike symptoms everyday. I had to quit work, school & almost all activity, except therapy, support groups, spiritual communites and the search for cure with protocols from specialists for this auto immune illness. It wasn’t long before I applied for disability which took quite a long time, so I was on welfare for a couple of yrs.
The only treatment at for CFS/ME was Provigil (for narcolepsy) & sedatives. Basically, kept awake all day & then knocked out at night. I lasted not even a wk. I felt insane. Wide awake & feeling sick was not a way I could live.
I pursued alternative methods, read everything about CFS/ME and ultimately after numerous protocols with multiple practitioners, the only thing that made a real difference was organic whole food as medicine, which took away the body pain. The rest of the symptoms, although reduced, are still very real & I’m still not able to work even P/T without going into severe flulike symptoms.
I’ve survived so far only with great support from all my spectacular loving friends & family (my dear brother George!) & all my spiritual communities & practices. All helping me especially when I would sink into despair & couldn’t make it through a month financially. All have helped me to hold onto faith & new lessons for living & learning everyday. I also came through 2 bouts of stage 2 cancer with so much love & help & am now clear for 15 yrs.
I’m so fortunate to have gotten affordable Housing in a Green Building almost 8 yrs. ago in a housing lottery, making it possible to live in an apt. in NYC. I'm still on disability & do some very P/T supplemental work. Conventional Dr’s have nothing to offer except painkillers, which isn’t the issue.
Just this last yr. & a half, I took a downward turn & felt like I did in the early stages of the first 5 years, therefore have been less able to do most things, except what’s essential and became once again in bed mostly. I do still push a bit with caffeine (green tea) & occasional meds. when I need to, in order to attend whatever helps most. When I do too much or expend a lot of energy, It takes days to recover from the intensified symptoms. It’s difficult to explain, these Auto Immune illnesses are called “the invisible diseases” as most people look ok when able to be out & about.
~~~~
This last yr. a good kind friend turned me on to a book about Auto Immune illnesses by a research scientist MD & the possibility of some diagnoses actually being misdiagnosed & possibly being undiagnosed Chronic Lyme Disease. I thought no! I’ve been tested numerous times over the yrs. After reading that & a couple of other *books, it turns out, with proper bloodwork, I have numerous co-infections related to undiagnosed Lyme Disease that are not detected in standard Lyme testing, that only scans for 2 strains. Finally a REAL diagnosis!
Turns out there’s over 100 strains in the NorthEast. Chronic Lyme disease is becoming pandemic with undiagnosed untreated ongoing co-infections ie. Bartonella, Babesia etc… & numerous other complications leading to many body systems breaking down. Now for the first time in Years I feel so hopeful for REAL recovery following this new direction in protocols with extraordinary people who've walked this path!!
I’m working with 1 Homeopath practitioner who is amazing & has nearly the same story as me, and has now written 2 books about her journey & a practical guide*. She was also mostly bed-ridden for 10 yrs. & is now almost 100% well. It took a few yrs. to address & eliminate all the damage related to years of misdiagnosis.
~~~~
This is where I’m in need, as I do need to work with an LLMD (Lyme Literate Medical Doctor). The FDA hasn’t approved the new paradigm saying that Lyme disease is cured with Doxy (antibiotic), which is true for many diagnosed early in the initial stages. There are thousands having been on this regimen numerous times who are still chronically ill & now have hope, tools & a real method for a way out…
I’m already a bit better working with the homeopath who is now well & have to work with an LLMD to maintain proper ongoing bloodwork & treatment, while eliminating each layer of infection, which I’m told with long term patients can take a few yrs. but progress all along.
The trouble is the protocols I’m now on & need are all out of pocket, since most LLMD’s are not covered by insurance & the ones who are, don’t accept my Medicaid based insurance.
So I’m projecting the amount I might need for a least a yr. hopefully while waiting for the CDC & FDA stepping up & approving the latest science, so Insurance will cover these protocols. (hopefully!!) I’m figuring in the Dr. visits, (2 practitioners) ongoing bloodwork, therapies, supplements, homeopathy, herbs & any drugs needed in the sum.
In the meantime, I’m hoping to, at some point to be able to either pay it forward or offer some of my services to any of you, like counseling & creative skills, when well enough.
This is so hard for me to put all of it out there, knowing that there are so many worthy appeals. I’m beyond appreciative for any support. I do know & keep being reminded by all you wondeful beings, that what we can’t do alone we can do together.
I have the upmost respect , admiration and love for all who are in my friends list! please feel free to ask any questions or offer any leads you'd like…
Thank you with all I have! Infinite Metta Blessings and Love to you all…
With Deepest Gratitude and Love,
Marie
** The Books I referred to changing lives are:
1. “Why Can’t I Get Better”: Solving the Mystery of Lyme & Chronic Disease
By, Richard Horowitz MD, LLMD
2. “Out of the Woods”: Healing from Lyme Disease
By, Katina Makris CCH, CIH
3. “Auto Immune Illness & Lyme Disease Recovery Guide”
By, Katina Makris CCH, CIH
Organizer
Marie Maybury
Organizer
New York, NY