About

I am a 20-year survivor of Lyme disease, or, more accurately, relapsing fever borreliosis. For 18 years I accepted it and lived with it, until my daughter was diagnosed with congenital Lyme. In the past year I have transformed from complacent, timid and uninformed, to activist research junkie with a mission. My mission is to get the Lyme criminals prosecuted so the millions suffering can be properly diagnosed and treated. I will not stop until that happens.

9 replies

  1. I’d like to send an email to Kathleen, however I dont see an email on the website. I have a question regarding the link between the fungal presentation of the endotoxin produced by the lyme spirochete and the HLA haplotypes that Dr Shoemaker (survivingmold) uses in determining the mold susceptibility of his patients. Would the people who have a multi-susceptible haplotype have an inability to clear these lyme related fungal antigens from the body and therefore have a much worse reaction to lyme and antibiotics?

    Liked by 1 person

    • On first perusal, we show there is no link to neuroLyme symptoms with the arthritis or hyperactivity haplotypes – it’s the opposite: If you DONT have a hypersensitivity predisposition, you’re going to have the post-sepsis Lyme. So, I dont think we need to know about “mold susceptibilities,” since most of us dont have the HLA-linked response to molds (arthritis). The Public Health Drones babble on about allergy symptoms to mold, but no, those are NOT the sick people.

      Liked by 1 person

  2. I’ve been battling since I was 9. I’m now 35. I still cycle with symptoms, I still get fevers, I still get days where I can’t walk. All of it. Now my neuro symptoms are increasing too. It’s shocking and disgusting that anyone (our government, research agencies, medical professionals) would continue to claim so many of us with this are either lying or insane.

    Thank you for this site and for fighting our fight. Keep going after them.

    Liked by 2 people

    • Omg, just when I was about to give up researching on Lyme
      & post-Sepsis and if they were somehow connected.
      DX in 2006 with Sepsis secondary to Histoplasmosis.
      I’ve been thru it all from 7 20 06 to current day.
      I’ve been researching Post Sepsis conditions since 2011 and prior but it wasn’t till another life changing event that lead me to today.
      A near fatal event in 2014 when I attended to take my life and put me the ER which than transferred me to one there other locactions that deemed more in part of mental health.
      Something that happened before this attempt which leads back to multiple medications that then before that in which originally set the app of the diagnosis sepsis only second to histoplasmosis. But if a professional say Dr listened to this not paying attention to the crucial areas of my explanation led to multiple misdiagnosis which led to many, many medications side of there side effects. Your post made me where are you a video on YouTube about the Lyme disease which I have watched many but yours as the most up-to-date and informative and leave me to a bit of Hope that I’ve seen. Mysa for the past 6 months have been trying to find anything that in regards to post sepsis that would explain conditions that I have experienced over the last 6 months. When I was diagnosed with a sepsis after a three-month Hospital stay I was told my diagnosis was is where is 1 + 2 million I am guessing partially because of the strain of histoplasmosis and wish I had. Butt I don’t think I need to explain the length of hell I had to go through to come out on the other side with a clear mind after being resuscitated twice suffering a severe stroke heart attack and everything that comes after that when your body shuts down to the bottom line being admitted into picu because Dr have tried everything. Hey at the time had no family except for a daughter that wasn’t around much even prior to this event and then after has been absent. She’s the extent of my so-called family the only other person at that time was my ex-husband bill thank God for him he work with the doctors and helping making my decisions since I could not. It Came Upon that the doctors wanted to put a trach in me butt Bill refused stating that if I did make it I would not want to live like that. I have only a few memories about hospitalization that are notable yet horrific and they are one waking up and seeing the CDC around my bed and the light by the gear with head mask even everything covered my state of mind complete confusion thought to myself what have I did now? LOL I can laugh now it’s about that part. So later it was explained to me that they had been there for a few reasons a few of them being to diagnose to witness education and their expertise and also provided at the time a medication the only one thot that would help me and the fight of sepsis. It was explained later to me that this medicine was very strong the only thing available at the time that they knew what even possibly come they’re giving me a chance of survival butt an opposite is it could be possibly strong enough to fight the and give me even a glimmer of hope. Without this intervention I would have died and not came back however there why is a downside to this as the medicine travel through my body killing the sepsis it would also kill the very things we need to live every organ lamb main heart everything that is medicine I need a to live would also cost me my life at minimum was going to leave me weather life of many multiple conditions for the rest of my life. So during that time still in an induced coma given I believe it was EXYREM not sure that the medication used for sepsis. Then they placed me while and pick you intervene usually being fed this antibiotic an induced coma fighting for my life inside of a ROTO bed. But I survived and they brought me out of the coma to explain what had happened at that moment a brief moment I felt like a survivor and that I’d been through it all but that wasn’t going to be the end of it. They went on to explain to me how I contacted Sepsis to start and that’s sepsis was just a condition but my original diagnosis histoplasmosis and a new fight begin. Now with the diagnosis of histoplasmosis a new fight begin first a rapid introduction into physical therapy short-term to help build the strength for me to endure a complicated surgery of removing half of my lower right lung. Without detail obviously I made it through that on the other side which the outcome of all that was many conditions and side effects medicines given at that time along with the side effects from all the medicines that went from 2006 to 2014. So I’ve given a very brief history of what has happened to leave me and part of why I think I have Lyme disease. 6 months ago a beautiful summer night out walking my dog with a friend I started itching really bad in one area of my stomach originally it felt like the waistband of my underwear was too tight just in one spot like blood the elastic head cut off my blood supply or something not thinking about it I just kept scratching we came inside I continue to scratch for like 15 minutes finally I want to look at it thank you again it was the elastic to my underwear doing this the family said in that this could not be in my underwear because it began to hurt really bad so I asked my friend to look at it. Because it was on my stomach at the bottom near my hip it made it really hard for me myself to see so Jill my friend looked at it and like shocked she said that something had bit me I how do I use my cell phone to take a picture and OMG I was definitely bit by something for the next hour or two the pain would get worse I called my nurse asked her to look at the picture I sent her and tell me if she thought that it was a tick bite because I knew this was something I had never encountered this was not a mosquito or a spider bite. She told me I should go to the emergency room that it definitely looked to her from what she can see like a tick bite but my friend didn’t seem as concerned only blew it off she went home and I went to bed butt through the night I had sweats the area and a big part of my stomach was very it was very painful Claire on through morning. I wish I had kept that picture but I do have a Scar from it and from this point I began experiencing multiple symptoms increasingly and number over time and it led me to go to my closest immediate care physician. I explained to them but I thought maybe I had Lyme disease because I’m pretty sure I had been bit by a tick months prior. No I explain this I knew when I had been bit up to this point too that from what I know about tick bites they would log into your skin into your body but I never physically seen the tick I still think till today that because aggressively scratched scratched and scratched that possibly and never made it into my system but I don’t know for sure the doctor scene to think that I would have known headache out of my body but in my mind looking back I never did find the tick that I scratched it so bad it would fly away you would think it would have been in my underwear I have no idea all I know is that I’m sick and with that they did what they said was a test a week or so later results are negative. Now this takes me to today I have been seeing a disease specialist Primary Care dermatologist multiple labs and yet there’s no diagnosis all the diagnosis of post etiology. Now I feel as though this is being brushed off to be in something in my head I can tell you that this is not in my head I have one for you to listen to what everybody else says my conditions haven’t changed they’re still there or Not Invisible I have acute repeated rashes lesions itching burning stinging extreme joint pain muscle pain muscle weakness chronic fatigue unexplained fevers and low temperatures up and down 96 1 2 100.9 I can come and go within 30 minutes night sweats but not perspiration waking up with my hair wet my clothes wet so bad I have to change my pajamas. I have felt like I was losing my mind no explanation okay maybe it’s all in my head but it’s not so what is it? Now most importantly if any of this is after reading or watching you’re a video on YouTube and the only thing that I have seen over any many YouTube views till now I see a condition you’ve diagnosed as post sepsis lthe disease? This is causing me a little more Panic since a couple days ago my symptoms would include the beginning of neurological problems now this is getting serious.. now this is something that I’ve been trying to educate and research if there was somehow a connection with my post sepsis diagnosis and the tick bite thinking I may be on to something here. Can you please help me I don’t know what is the matter now I’m really am I really on to something? Can you please help me with this and help so I can help others in return? Thank you in advance Cynthia Fortner.

      Cynthia Fornery
      317 496 3964
      cindyfortner1968@gmail.com

      Liked by 1 person

  3. Let me know how we can help in this struggle. I’m in a similar situation with one daughter now dealing with serious TBI issues and the other two probably infected as well but not symptomatic. I’m tired of the same old IDSA bullshit and not being heard and nothing being done at the federal, state or local levels. The level of suffering and deaths from those of us afflicted with this will be known and people in positions of power will be accountable.

    Liked by 1 person

  4. Well, I was going to say Right on! three times, but it wouldn’t let me. So, Right on, right on, right on!

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: