My LLMD Passes Away
I got the news yesterday that my Lyme doctor (Hynote) had passed away. The sad/scary part is she passed away treating her own lyme and she got sepsis from her IV/Port. This is the doctor I have been talking about who was finally solving the puzzle with my lyme & co’s, genetics, malabsorption, and other issues. She was like a mad scientist doing her thing the last visit and now she’s gone.
I have at least 15-20 blood tests in limbo so I hope a practitioner in her office will know exactly what she was testing me for. She will be missed by so many who she has helped and in the lyme community. May she rest in peace and be at peace from lyme.
What Has Improved In Nearly 3 Years Of Treatment
As the new year is getting closer I was trying to think of all of the medical issues with Lyme and all my other illnesses that has improved since treatment. To tell you the truth not much has changed or improved and some things got worse. I have tried oral, IV, injection antibiotics, herbal protocols, diets, holistic….. and the results were never any good.
In the past 3 years I think the only thing that made me feel well enough to walk around the block for 2 days was Mepron. But my Babesia is still alive and well. Other than that I spend everyday locked up in my house under blankets and hydrating with a lot of fluids.
What symptoms have improved?
- Lost The Ability To Walk/ Spine: One of the scariest moments for me was last year when I woke up and went to get out of bed and could not walk. I would walk “like I had no spine” as the neuro told me. It took all my concentration to walk from my room to the couch. I bought a wheelchair and thought I would never walk again. I was due for spinal surgery when I found out the lyme was messing up my spine so surgery would not help. It took about 3-4 weeks but I started to get the feeling back in my lumbar and legs and was able to walk again. I am not safe by any means it can come back at any time but I am thankful I can walk again.
- Facial electric shock: The electric shock feeling I described in a earlier blog post years ago has gone away. Every time I took my first bite of any food or drink I would get this painful electric shock from the bottom of my chin up to the top of my ears. I believe it was my lymph nodes in my face that were swollen and sensitive.
- Epstein Barr Virus: I was diagnosed with this many times and positive on blood work at the ER. The doc said I had chronic EBV or Mono. After taking Byron White EBV formula I am now negative but not sure for how long.
- Chronic Strep Throat: This one was bad and I felt like I had razor blades cutting my throat everyday for years on and off. It was very hard to swallow or eat spicy/acidic/salty foods. It would go away and come back weeks later. Knock on wood I haven’t had strep throat in about 8 months.
- Mouth Sores: I would always have mouth sores inside my mouth and on my tongue. This may have been from the thrush/candida I had and maybe from the antibiotics but it has also gone away around the time the strep throat did.
- Red Bumps On Forehead: One of the first things to go away during treatment was the hundreds of red dots on my forehead that made my forehead feel like sandpaper. We thought it was parasites and the Ivermectin finished them off but there was no solid answer of what caused it.
- Ankle Pain From Bart: Bartonella used to be a lot worse and my ankles felt like they were split open with an axe. I would cry myself to sleep at night. After treating for Bart my ankle pain is now about a 5-6 on the pain scale. Much better.
- Seizures/Turrets: I used to have small seizures and turrets twitches in my neck/head. Both of those have improved and I don’t twitch as much.
- Candida/C-diff: Antibiotics and aggressive treatment gave me both of these which both were horrible. The candida turned into an external flesh eating monster and did a lot of damage I do not want to speak of or relive. That is why now I am not doing a lot of antibiotics anymore. Both have gone away but the candida is showing up on tests.
What Are My New Symptoms?
- Body Rash: I broke out in a rash all over my body from my thighs to my upper torso. Not one doctor could tell me what it is or what caused it but after 7 months it is starting to go away. The rash was like chicken pox but with red bumps that looked like pimples.
- New Coinfection Proto: My LLMD thinks for sure I have a new coinfection that was missed before. I forget the name we are still testing for it.
That’s about all my brain can think of or remember but not much has improved after 3 years and my lyme is still very active. So when the CDC says it can be cured in 2 weeks do not believe them. I’ve had lyme almost my whole life though so it will take forever before it goes into remission.
I hope all of you chronic illness warriors have a safe and merry Christmas. Keep fighting and never give up hope.
Blood Results & Visit To LLMD
*I am extremely exhausted and I have to leave the house, get up early to give another 20 vials of blood in the morning so this will be shorter than the whole story.
My blood results for mold, heavy metals and other stuff came back. My heavy metals looked good. My mold showed a lot of negatives and my black mold was negative which is a surprise since I lived in a flooded house. But I did have some mold issues just not sure which ones. I was also told I have bad genes and a “double whammy” gene which makes me more susceptible to lyme disease and mold.
My EBV and HHV6 came back negative so I think I got rid of those for a while. She thinks I have leaky gut. We are testing for a “rope worm” which she said is a newer parasite and hard to kill. I was told I also have a new coinfection besides Babesia and Bartonella, it is a protozoa but not sure the name. My selenium is low. My lyme, bart, bab are still active.
I was told I have “chronic dehydration” from this LLMD before I even mentioned it to her that I have it. My PCP last week said he has never heard of it and I was stupid for thinking that. So now my ER doc and LLMD said I have chronic dehydration. She believes my body is missing a hormone that helps absorb minerals and water? Therefore my sodium and other things were low even though I eat a ton of salt.
I was told to get rid of our smart meter from PG&E and stop drinking from any plastic bottles. She also thinks Vit D could be causing harm to my body due to converting in my body? I’m tired so I don’t really know what she actually said.
I will be taking Delextro or Delektron (?) she spelled it two different ways but it’s for absorption. I will be drinking a cap full of E-Lyte water mixed into my water for concentrated electrolytes. I have a standing order for a home nurse for IV fluids, ringers and Myers cocktails. I was given Pre-Biotics and told to stop taking Florstor. I will be getting Renolex and A-Fung for ringing in my ears and antifungal next visit. I will doing a lot of blood work and a stool test for parasites again.
So she pretty much said my PCP was an idiot and knows nothing. She said my lyme culture is 99% accurate and cannot be denied by any doctor. I am off to bed….. hope you all are having a better day.