Lyme Rage
by Living With Morgellons
Whatever Morgellons disease turns out to be, for me it was a blessing. It taught me I have Lyme disease.
I get sad when I wonder how many people out there have Lyme and don’t know it.
How many people just think they’re only crazy lazy, or stupid.
I wonder how many people are in mental institutions or prison or just lost in their own house (until they lose their home) because Doctors have failed to accurately diagnose them.
Who’s fault is this?
I know my own private Doctor is a good Doctor and a kind Doctor and she truly didn’t know what Lyme disease was or that I had it.
She could have never diagnosed me for an illness she knew nothing about.
Who’s fault is this?
Is the Center of Disease Control really that powerful?
I watched the video below and I saw myself and my life in those people and I realize I’m crying because I’m angry that I let Doctors, so-called specialists call me crazy. I took their pills and I did what they said and I believed them when they said I was I imagining the pain and it was only stress that caused me to get lost in my own neighborhood.
For myself I lost a lot of time to Lyme. I’ve had it for most of my life.
If I told you what I’ve been through, it might make the hair raise on the back of your neck.
I can’t say I lost my life because I’m better than that and I’m bigger than Lyme and I would like to think I transformed my illness and got as much good as I could from it.
The problem for me is when I think of my lost time and I multiply that by an unknown number from all the people who have Lyme. That’s when I become outraged.
That’s a lot of lost time and potential.
If not for Lyme, my sister would have been a Doctor and when you start adding up the number of sick and multiply that with collateral damage, it starts to get ugly.
Meanwhile America is going to the dogs and I wonder how many of the sick could have been watch dogs for liberty, only they can’t get out of their beds.
How did this happen?
Is the CDC really that powerful?
Call me crazy but this humongous fuck up doesn’t feel like an accident and yes I’ve gone back to swearing.
I cleaned up my gutter mouth for a long time because I realized people don’t listen when you swear and I thought it was just more graceful;
But this disaster is an epic disgrace and “I am myself the matter of my book”.
I see videos like this and I get mad, I just don’t know what to do about it. I’ll keep talking and probably cussing until I figure it out, thank you for listening.
Please watch this video of two Vermont farmers suffering with Lyme disease. It’s less than 10 minutes of your time.
http://www.battlecreekenquirer.com/videonetwork/2487591771001/Afflicted-Lyme-disease-in-Vermont
It took the Doctors 50 years to connect birth deaths to not washing their hands . Some doctors were fired / dismissed for washing their hands before after each patient 1850s. I know Doctors are held in such high regard but every chance I get I tell my Doctor something that HE DOESN”T KNOW . My last thing was the PSA test was invalid and was going to be removed from use and that all exam gloves were the cause of many cases of infection in all medical procedures . Don’t believe me , Look It Up … I think he hates to see me because I make him think ,,, He is a really nice guy but I think I keep him grounded Tina all we can do is fight for our health , Me And You kid , Me And You ….. Getting ready to go to my vet ,taking Molly my white lab and Max my 20lb tabby cat . I mentioned pythiosis to my vet , I’m hoping he has something to tell me. Good to get your email , PS , try the oil pulling with organic grade A very smooth oil (no grit) Keep a spit cup and you’ll get better with time ….. MIKE
I throw my used coconut oil form oil pulling into the fire and then feel magic when it goes poof 🙂
You’re right about the Doctors.
I like to say:
“Be humble, you could be wrong”
Doctors hate that.
This link contains a petition fro a congressional hearing into the CDC, IDSA, on this very topic. They need roughly 5,000 more signatures. One Congressman went to 17 doctors for a script from each one to get the treatment he needed. They are stalling on this and letting this become epidemic in order to push a accine Baxter is in stage 3 in their trials. Please folks, sign the petition and pass it on.
Tina I share you rage.
https://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?utm_source=supporter_message&utm_medium=email&utm_campaign=petition_message_notice
I signed this but a post is a good idea.
Are they really developing a vaccine?
Duh.. of course.
Thank you Sharon!
Correction vaccine, the v on my keyboard is getting sticky.
Great post. Believe me I am familiar with the rage, about Morgellons and also Lyme(which I don’t have to my knowledge. I did mention to the derm I had a circle on my back–which was probably the rash in a circular pattern but I couldnt see it well–and that I’d heard there was often a Lyme connection, but she dismissed it all. I do remember a period maybe late nineties where I had stumbling/bumping into things issues and spaciness and later had memory problems which I associated with a concussion, although some not all of it started prior to the concussion. Nowadays I can’t think of ordinary words many times a day. When I saw a neurologist he said “My wife was like that at menopause too”.)
People need to harness our rage. Remember the AIDS activists, I think the group was called ACT- UP; that’s how they shamed the gov’t into doing something.
What made the CDC change their tune about numbers infected?
Keep swearing. I like it.
J
What has changed the CDC tune, is that they are coming out with a vaccine for lyme disease. Baxter is in stage 3 trials. As you may know, the CDC and FDA are owned by big Pharma, they get a million dollars for every drug the push through as being safe. Their is a petition going around by a number of sentors that want an enquiry on the CDC, IDSA in their complicity with the insurance companies as well. they do not want to pay for years worth of treatment on something that is closer to an epidemic than any of the other diseases they are pushing these days.
Tina, do you have the link handy with the petition?
Sharon, I signed the petition using your link. I wouldn’t have known about it otherwise.
Tina, I hope you will share your experiences someday, the ones that would raise the hair on our necks. You have a way with words and a fascinating story to tell which can only help the cause of Morg and Lyme sufferers. Please don’t be insulted when I say I can even picture it as a movie. Dragged to the depths, mistreated by doctors, and in the end standing triumphantly by the sea, having recovered through your own sheer will and determination.
J
Thank You J!
Sharon thank you…and ya, follow the MONEY if you want answers. Where can I get info on the vaccine they’re developing?
I’ll have a poke around on the net and see what I find.
That last vaccine was a disaster!
Tina, there was a lot of articles attached to the petition link. These are not coming from conspiracy theorists but elected officials.
Look at this way any vaccine will fail. They cannot even test for all of the varieties of spirochete. How could a vaccine in this case be successful? And of course even if it was some kind of wonder drug it would do nothing for how many millions aready suffering. Makes my blood boil.
Hey maybe that is the cure, cleanse the blood. UV therapy; some integrative docs are using it for other infections.
Oh Sharon..I read those…that story about that politician and his Dr working with other Dr.s to rotate writing scripts…wow.
Also Sharon, I did read about a women sing the UV light blood cleansing and making progress (with M).
I’ll try and find it.
I don’t know what made the CDC change their minds GOOD question J!
I don’t trust those people at all.
You know that in Lyme clinicians…”Lyme rage” is what they call the anger issues that are sometimes associated with Lyme.
One Dr had a “Lyme Rage” form you had to sign. It said patients would only be given one warning about episodes of Lyme rage…then booted after that.
Her doctor sounds like my doctor of 32 years. I was devastated when she wouldn’t believe me and worse still was how angry she was at me for trying to get to the bottom of what was wrong. As bad as it is now it must have been worse for you and people like yourself who got sick years ago. At least now there is some support and some help. Thanks for continuing to stay here and help the new ones coming up. Wendy
Date: Tue, 3 Sep 2013 18:27:26 +0000 To: braunwin@hotmail.com
Her doctor sounds like my doctor of 32 years. I was devastated when she wouldn’t believe me and worse still was how angry she was at me for trying to get to the bottom of what was wrong. As bad as it is now it must have been worse for you and people like yourself who got sick years ago. At least now there is some support and some help. Thanks to all
who continue to stay here and help the new ones coming up.
Wendy
P.S. I am signing the petition even though I live in Canada.
Hi Wendy,
In the future when things like Lyme and Morgellons and other chronic infections are recognized by scientists, how are those Doctors that put their patients through hell going to feel about themselves.
Thank you for singing the petition!
I’m not a revengeful person by nature but I look forward to that day. I like to see someone stop Dermatologists from giving out dangerous anti psychotic drugs without even exploring the need for them. It makes you wonder who are the crazy people in this scenario?
Reading this makes me think there is a sinister back ground to all this as the story of psychotic drugs being the answer always seems to come in from the Dermatologists ..I just hope we can unravel the knots and use there own rope to hang the truth up for all to see .As people suffer today they will be held accountable in time for such bad practise. I can not express my disappoint of these so called professionals .
Hi Gabbie!
I got your message today. Hoping I can call you tomorrow.
Will you email me your phone number again.
Our house is a little under construction so I’ve been a little nutty around here.
Oh and Gabbie, I am so disappointed in these “professionals” as well.
I signed the petition, thanks for posting the link !
Thank you Misty, please share it.
I think the CDC is in litigation with several states . They were found guilty of several things , If they didn’t move on this Lymes thing they would have to pay fines . I think all this will come out but I hope the people get so fed up with all the corruption and collusion, that they toss all these lying pricks out on the ears ……
I went into a clinic type situation after two appointments of red tape to qualify and told the nurse practitioner I have Lyme. I went so I could have a PCP in case I need one the fall/winter and in general and I have no insurance since I don’t-can’t work. I have also developed pretty bad anxiety and we discussed that. Anyway, the NP told me she used to work in Washington DC area in a mental health facility following up with patients. She said she saw in her words ” so many Lyme patients in psychiatric care” she said it was so misunderstood. I told her I was seeing a Lyme doctor soon. We talked about gut health and dysbiosis and probiotics, etc. She said the brain becomes inflamed with Lyme like any infection and said it just doesn’t make sense that doctors can’t figure that out! wow … She was one in a million in the healthcare. Of course I did not mention Morgelllons and when showed her my lesions she did not bat an eye.
It was good and sad all at same time. It made me sad that I ended up in this situation without insurance, no job, too sick to work, losses out the wazoo… anyway, just wanted to share this. Proof from her so many with Lyme are stuck in mental health care and psychiatric wards! Scary
Wow misty,
She sounds amazing.
Not too many health care practitioners outside of LLMD’s, have that kind of awareness.
Thank you for sharing that.
I hope she can help you in some way and I am sorry you’re dealing with this awful disease.
Thanks Tina, I was really surprised, it was nice to be validated and understood. She said she would work with me around my Lyme physician so who knows maybe I can get some assistance on my medications for Lyme…not holding my breath on that one though. I wondered if a Lyme support group would be helpful even though I have Morgellons and Lyme? What do you think or anyone here think or have an opinion? There is one near me for Lyme, but part of me thinks they would not understand the Morgellons and I would not bring it up. I do think they can relate to the isolation and suffering though if they have Lyme. I wanted to write a bit more and hope it’s okay too under this Lyme topic. I decided to go into all my pages of notes from all my research on Morgellons and Lyme and I got a 5 section notebook and organized all my notes so I can just access it easier when my brain gets fuzzy. Anyway, along with all the remedy sections, I included a spiritual section-this comprised all my notes from places of me trying to deal with grief to positive thinking stuff, or quotes from people on line with positive attitudes and so forth. What I realized though after I was all done with this project, is that going through the spiritual notes, that I am exhausted, have essentially lost hope and dreams. Pretty typical of having Morgellons – right? I got to a place where I realized I have to take a step back and do some surrendering to this, and find some acceptance with it all within myself or I am going to just keep spiraling downward. I am stuck between striving so hard to beat it and giving up. It’s like one foot in one place and another on the other side. I am trying to control this illness by working hard on beating it, or I am just finding ways to survive the days. Maybe this is typical. Hopefully since I organized things and feel I am done with research for the most part and working this to the best of my ability, I will settle into it. Maybe it will be less stressful who knows…. anyway, just wanted to share this. Loss of hope is definitely not good as that leads to loss of connection to life, but that pretty much is Morgellons! Anyway, I am rambling, but wanted to share some feelings, hope it’s okay. I won’t do this often, but just needed to too tonight. I think in a sense I have come full circle from grief back to acceptance and I will keep working on trying to beat it but in the end I guess faith is restored because I now will have to rely more on a higher power if you will to help me. For me that is God… Not trying to make it religious, just saying I need some rest and peace with this horrendous illness. Thanks for letting me vent or share. 🙂
Done sign the petition we must hope one day all this madness will stop God help us all
Thank you Jana.
It is madness isn’t it….yes, someday 🙂
Sadly under Obama care, I do not see it happening anytme soon. People in the U.S. will likely be forced to take the new vaccination they are coming out with. We in the Lyme/Morgellons community know this will not work. Certainly it will not do anything for those already infected.
The one good thing that I often think of regarding the latest studies coming from Marianne Middleveen and Eva Sapi, proves that their is very much scientific eveidence that Chronic Lyme is very real. The microscopic photos prove it.
Hi Tina, I wasn’t sure how to do this or where, so I hope this is okay and not inappropriate. I am wanting to see if I can talk or email with DC ( DIviding Cricker) as I could use someone one on one to help me with this illness and he/she seems to respond in helpful ways and encouraging ways and has been responding to you and MR. CS for a while. I also requested same over on MR CS site. I am not sure if DC wants to correspond, but if you would be able to give he/she my email and ask, I would be grateful. I am under the care of a LLMD but still need some support and someone to talk to. All the forums seem to be dying down. Thanks Tina !!