Sunday, September 7, 2025

New Diagnoses

New Diagnosis

So, so many things have changed this year. For years, doctors just tell me it's Fibromyalgia, don't worry it won't kill ya. Seriously, last month a Rheumatologist in Dodgeville, Wisconsin told me to just exercise and eat better and I'll feel better. (Like in the last forty years of being sick no one has ever suggested that and I haven't tried twenty different diets.) Anyways, he went on to make my daughter and I watch a Pilates video. Needless to say, I won't be going back to him. As soon as he walked in the room, his first words were, "oh another Fibro patient." Without even examining me. He looked me over in about ten seconds, didn't look at the weird lump on my back I asked him to, like all the other doctors and just wrote down a list of things that cause fibro, like being female and having past trauma lol. Tell me, is there a person on this earth that doesn't have trauma?

The referral to this guy came from a pain management nurse that I was seeing that also says Fibro. Well, actually each time I go she says something different, first she said Covid vaccine injury, then the next time it was Fibro. Even thought she talked a lot about being "holistic" on her hospital page, she just kept trying to push meds on me, even though I told her I react to most meds, especially anything sedating.

I am the kind of person that wants to know WHY. Why do I have so much pain in my back? Why am I so shaky all the time? Why am I dizzy, have head pressure, feel invisible tremors in my legs and sometimes arms. Why do I react to meds so much? Or they simply don't work on me, such as Novacaine.

So, anyways, one of the referrals she sent me to was a neurologist in Darlington, Wisconsin. Now over the years I have been from doctor to doctor trying to get answers, and rarely get a real physical examination. It's usually them typing into a computer while you are talking, listen to your heart and than say "I have fibro or just say it's aging or whatever other easy to reach for diagnosis they think of."

This guy was great. He really examined me and did tests. Like actually neuro tests. I had a positive Hoffman test and had brisk reflexes on my left arm and no reflexes in my ankles, for example so he ordered a brain MRI.

Small Fiber Neuropathy

Unrelated to this neuro, but an ortho pa had also recently ordered an EMG test for me too which surprisingly to me came back normal, but because I could not feel the needles or shock in my feet, he thought I had small fiber neuropathy and said someone would hav eto order more tests for me including muscle biopsies. As of now, I haven't heard back from the orthoa pa and my neuro did not order it so I know I gotta bring that up again to doctors.

There is really no follow up with doctors. You gotta be your own advocate, I realize this but it's so hard when you feel so sick, tired and scared.

Orthostatic Tremor

Anyways, back to the neurologist. He diagnosed me with orthostatic tremor, which he said a lot of his patient with POTS get. He ordered a tilt table test but they called and the closest appt is several months away, in January so I have to wait for that. I guess that just verifies I have POTS which will validate his orthostatic tremor diagnosis.

Pituitary Tremor

Because of my neuro tests, he also ordered a brain MRI. He said between my reflexes being messed up, my upper body tremor and the white lesions in past MRIs he wants to rule out MS. Well, the results came back and I have a pituitary tumor.

He has not called me about it but I have a follow up appt in October so I guess he's waiting for that. But shockingly my regular doctor called me an said she saw the results and she referred me to a neuro-endocrinologist.

So, I sat here for three weeks waiting for them to call for an appt but they never did. So, a couple days ago I googled neuro-endos in Madison and found out they literally have pituitary clinic there. So, I called them, and went over my symptoms and they gave me a fax number for my doctor to fax a new referral, so I messaged her and got that all lined up.

The MRI also showed I have some bulging discs in my neck but I already knew that from prior MRIs.

My Heart

After a stress test and ultrasound I have gotten diagnosed with two aneurisms in my heart. Apparently they have been there on at least one prior MRI but like my brain tumor, nobody told me. It's funny czu my cardiologist was like don't lift anything heavy.... and yet for God knows how long I have had these and nobody ever even bothered to tell me. But anyways I have two aneurysms in my heart.

During the stress test the dr that was there said I have "hyper reactive" blood pressure and also that my ekg before the test was not normal and they almost did not do it. I don't know that they wrote in my chart why the ekg was not normal though. I noticed in Mychart that all my ekgs are labeled "abnormal" but it doesn't seem to concern doctors whatever it is that is abnormal.

Symptoms

In the meanwhile, my symptoms have gotten so bad. I still don't know what to do for my back. My doctor sent my MRI over to a neuro-surgeon in Madison but he had his receptionist call me and tell me he didn't think he could help surgically. I was so shocked, I have so many bulging discs, aortitis, several tumors on my spine called, hemangioblastomas and plus a couple lipomas along my spine and si joint. I have an annular tear, which shows up in every MRI I have ever had, and facet atrophy and some other stuff I'm not remembering now. Anyways, he said he couldn't help. Everyone just wants to drug me. I want to know what it is and fix it.

My Back

I can barely walk anymore. I can't sit at all, I can't stand. I can walk about a couple hundred feet before I have bad pain in my back. But it's not just pain, it's a pulling and pressure sensation. I feel like my back muscles aren't' right, they feel weak and start to tighten up as soon as I'm standing. If I sit, I can't get back up and have to lay down the rest of the night in total pain and with this weird sensation that I get in my stomach that feels like my stomach muscles are being sucked into my spine. If anyone reading this has felt this sensation please comment below cuz doctors look at me like i'm crazy and I haven't really talked to anyone else who has this.

SI Joint

So after I had an epidural done on my back to relieve my lower back pain, I noticed this weird lump over my right si joint. I never had pain there before but for some reason since I got the epidural, I do now. I asked every single doctor about it along with the pain management nurse who did the epidural and no one really seems to "hear me." My regular gp just said it's probably another lipoma like the other one I have on spine.

I noticed it about a week after getting my epidural. I don't know if it's because of getting an epidural or I just noticed it cuz I had pain there after my epidural, but it's been months now and it's still there and still hurts. I can't lift my right arm up i the air without feeling it pulling on that spot in my si joint, I assume that is referred pain from a nerve?

Subluxed Ribs

I also sublux my ribs all the time. I seem to do this a lot at night or when lifting my arm to do something like lift the dryer lid. Just all of a sudden it's sharp pain between my shoulder blades and a bit to the left. I do have bulging discs there too but my chiro, who is the only one who helps with this, says its a subluxed rib. He is able to usually fix it right at the office visit. But then it just happens again in a couple weeks. So, I do monthly chiro visits trying to keep everything aligned.

My Head

I don't know if this is related to the pituitary tumor or now. I just can't believe I am saying I have a brain tumor. It feels so weird! They are usually benign but seem to get treated pretty much the same way as cancer, with hormone treatment, radiation and surgery.

But anyways, I have lots of neuro symptoms.

I have head pressure almost always but to different degrees depending on position, activity and the time of day. I have dizziness, especially in the morning. But I always have to be careful of how I move my head, can't look up or to the right quickly. Dizziness is every day but only a couple times a year I have true vertigo.

Sleep

So I have to bring up sleep here. I have this weird thing that happens when I fall asleep. First, it's super hard to fall asleep because I get restless legs/stomach. I get that awful strange sensation in my legs as well as my stomach. That antsy I gotta move or punch my legs or squeeze my stomach muscles so it will stop, but it still doesn't. Those that have this condition will know what I mean.

But anyways, as soon as I drift off, like the very second I do, I jerk awake with this awful awful awful tremor feeling in my body. Sometimes my jaw shakes so bad I cannot control it. I see black spots in front of my eyes or shadow like things moving in my vision. My heart is racing and I am breathing heavy. It's almost like I got shocked or had a completely panic attack just at the moment of falling asleep. I literally feel like I'm about to die when it happens. It's so awful.

My Eyes

I had my first migraine with aura a couple days ago. It was at night and I was dozing off but couldn't totally fall asleep so I turned on the tv to watch and I saw this weird black and white shape that kinda looked like a zebra. I kept thinking I must of looked at a light then looked away but still seeing it. Then all of a sudden it grew into this c-shape like a crescent moon and it was full of black and white flashing lights that were moving in a circle. It lasted about twenty minutes then went away thank God. That was crazy. I feel for people who get these a lot. I have a friend who gets them several times a week, so I didn't panic cuz right away I knew that had to be what was happening, a migraine with aura. I didn't get a bad headache like some people do but about two days later I got a "pressure headache" that I have pretty much had ever since. A couple times I have gotten some flashing lights too but not to the extent of that first one.

I have had issues with my eyes for months now. Blurry, (for months) seeing double (for years) and certain things like reading and being on the computer, which I am a lot make them water, become more blurry and just irritated overall. I have gone to the eye doctor and the ER about it because strangely my pets, my cat and two dogs are having eye troubles too so wasn't sure if we all have pink eye or something, but even after treatments with drops we all still have it months later. Weird.

Ears

Tinnitus all the time. Sometimes it's ringing, sometimes it's a swooshing sound, usually it's the same sound as if I was holding a seashell to my ears.

My Legs

A buzzing, internal tremor, almost always in my legs, that gets worse with activity. A tremor in my arms and hands that comes and goes. Memory issues, sometimes brain fog. The worst is this feeling that I can't stand on my legs anymore. If I stand more than a couple minutes my legs start to tremor and the muscles twitch like they can't hold my weight. You can see the muscles and my legs jerking and tremoring. This is what the neuro thinks is orthostatic tremor since it happens when I'm standing but I get some relief, at least from the muscle twitching once I lay down.

My Stomach Pain

I don't know what is going on with my stomach. I have this continual pain under my right ribs. It's like a light bulb, it turns up and down throughout the day. It doesn't seem to be related to movement, and not really to eating either although a couple times I did notice it after eating, but I have noticed it when I didn't eat too.

My dr ordered a urinalyses and a cat scan of my abdomen. It showed I have some kind of cysts in both kidneys but she didn't seem to be worried about that, didn't even bring it up to me. I have a kidney stone but it was in my left kidney, not my right and is small. So still don't know where the pain is coming from. The urine test showed blood and bacteria but you know for us women, they always say it's cuz we didn't wipe right. Don't know why they bother with the test. So still don't know why there was blood or this right sided pain.

There are some other things but I'm just exhausted from writing all this, so til I have some more results back, and I can update things, take care.

Saturday, May 3, 2025

May is Lyme Disease Awareness Month

It is also Fibromyalgia, Ehlers-Danlos Syndrome, Multiple Chemical Sensitivity Month and many more health challenges that I have or can relate to.

So I thought I'd compile a bunch of what I hope is helpful information to you.

Do you know how to properly remove a tick?

Here are the do's and the don'ts.

1. DO: Grab the tick as close to your skin as possible with tweezers or a tick remover kit. https://amzn.to/4jEUBv2

2. DO: Pull firmly upward. If any part of the tick's mouth barbs or head is left there, pull them out with tweezers.

DON"T: Squeeze the tick, put chemicals such as nail polish remover or Vaseline on it or burn it with a match. The Borrelia lives in the tick's saliva and guts and these things make the tick regurgitate it's contents into you increasing chance of infection. https://www.aafp.org/pubs/afp/issues/2002/0815/p643.html

3. Wash area with soap and water and if you have peroxide or alcohol pour over area.

4. You can send the tick in for testing at different labs. Ticks carry many diseases, not just Lyme and you can pick what you want it to be tested for. Here are instructions on how to send in the tick.

https://www.tickcheck.com

5. Keep an eye out for symptoms. Less then 50% of people who get infected with Lyme disease will get a "bull's eye rash", so you can still have Lyme if you don't have the rash. You might also develop flu like symptoms, a fever, body aches, neuro symptoms like brain fog or confusion.

Acute Symptoms and Rash pictures

https://www.lymedisease.org/.../lyme.../early-lyme-disease/

Children's Symptoms

https://www.lymedisease.org/lyme.../lyme-disease/children/

Dog's Symptoms

https://shorturl.at/b0rWB

6. Learn about what co-infections might be reported in your area. Many doctors will dismiss Lyme if they see it was a dog tick, or any kind of tick that is not a deer tick, but many different ticks pass many different kinds of co-infections. You can get infected with multiple infections all at once with ticks.

Did you know that Lyme disease tests are very inaccurate?

Well, they are.

The first test a doctor will give you is the ELISA. If you test positive on this, then the doctor will go to do a two-tiered test called the Western Blot.

The problem with this method of testing is that these tests measure a patient's antibody response, they don't directly test for the Lyme bacteria. In the first four-to-six weeks of Lyme infection, most people have not yet developed the antibody response that the test measures so are likely to test negative even though they have a Lyme infection.

And it gets more complicated than that. Read more about the Western Blot testing here. https://www.lymedisease.org/lyme-disease-test/

There are labs out there that specialize in Lyme testing such as Igenex but your insurance is not likely to cover it. https://igenex.com/

Don't take my word for this, here are some articles and research papers on the subject of Lyme testing inaccuracies and which tests are better.

LYME SCI: Analysis shows standard Lyme testing is highly inaccurate

https://www.lymedisease.org/lyme-sci-testing/

Is Lyme Disease Testing Really That Bad?

https://igenex.com/.../is-lyme-disease-testing-really.../

Lyme Disease Test Effectiveness

https://shorturl.at/ERnkb

From AI

These antibody tests have poor sensitivity in early Lyme disease (35-50%) and inadequate sensitivity in some of the later stages of Lyme disease (e.g, 75-89% in neurologic Lyme disease).

Lyme disease tests, particularly the standard two-tier serologic tests, can be inaccurate due to several factors:

1. Timing of Testing and Antibody Development:

Early Infection: Serologic tests, like the ELISA and Western blot, rely on detecting antibodies produced by the body in response to the Lyme bacteria. These antibodies may not be present or detectable in the early weeks of infection (window period), leading to false negatives.

Antibody Response Variability: The immune response to Borrelia burgdorferi (Lyme bacteria) can vary between individuals and even within different stages of the disease, impacting the test's ability to detect the infection reliably.

2. Test Sensitivity and Specificity:

Sensitivity Limitations: Tests may fail to detect Lyme disease in some infected individuals, especially during early infection or with certain clinical manifestations.

Specificity Issues: Cross-reactivity can occur, meaning antibodies formed against other microbes or conditions (e.g., syphilis, other tick-borne diseases) might mistakenly react with Lyme antigens, resulting in false positives.

3. Test Variability and Standardization:

Interpretation Challenges: Western blot test interpretation can be subjective, and different laboratories may use varying criteria, leading to inconsistent results.

Use of Unvalidated Tests: Some laboratories offer unvalidated tests or employ non-standard interpretation criteria, which can produce inaccurate results and should be avoided.

4. Presence of Co-infections:

Tick-borne co-infections (e.g., anaplasmosis, babesiosis) can complicate diagnosis and treatment, and Lyme tests might not detect these other infections.

5. Limited Scope of Current Tests:

Current tests primarily focus on detecting antibodies to Borrelia burgdorferi, the most common cause of Lyme disease in the United States, but may not detect other Lyme-causing Borrelia species prevalent in other regions.

Direct detection tests, like PCR, which look for the bacteria's DNA, have low sensitivity, particularly in blood samples, because spirochetes might not be present in high enough concentrations.

In Summary:

Lyme disease testing can be inaccurate due to limitations in sensitivity and specificity, challenges with antibody detection in early infection, variability in testing protocols, and the presence of other tick-borne infections.

Lyme Disease Awareness Ribbon
by AwarenessAndSupport

Sunday, March 16, 2025

Living through Tumultuous Times with Chronic Illness

Lyme, EDS, Fibromyalgia, Pain, Insomnia, Fatigue, Stress, Doctors, Repeat.

Then throw in all the craziness of the world right now. More stress.

How can we heal when we are in a constant fight or flight mode? How can people that cause the stress live these long healthy lives?

How can other chronically ill patients support people who cause this stress?

I am just so sad.

We live in a world where people do not care about others. Not everybody, but too many.

We have a crazy president and a team of sycophants that surround him and enable him.

We all risk losing Medicare, Medicaid and Social Security. But so many for some reason, still stand behind this maniac. I just don't understand it.

Again, I am sad. In pain, and sad.

I know a lot of balance is needed right now in this world. Trying to do the little things you can, while still taking care of yourself. Trying to stay informed of what is going on in the world, but still taking mental health breaks when you need them.

It's so hard to feel helpless, and hopeless. But I know there are people out there fighting the good fight.

I remember when I used to be able to. Now I watch, glued to my tv screen, watching our country crumble and taking a big part of the world with it.

This is what I want the world to be. I pray one day it will be.

Friday, February 7, 2025

Back Problems

So not it's February 2025

Just a vent...

My back problems started in 1991. That was the first time I threw out my back. I started doing it more and more until about ten years ago I could no longer twist, bend, sneeze or roll over in my sleep without "throwing out my back. I have gone to so many doctors, pain clinics, physical rehabs. I have had a nerve ablation and epidural. Both of those just made me worse. I have gone to several different chiropractors.

I constantly sublux my ribs and have sharp pain in between my shoulder blades. I have bulging/herniated discs in my upper back and lower back. Several of them. I have multiple meningiomas throughout my spine and arthritis and degenerative disc disease. I have an annular tear and high intensity zone at L5Si probably like everyone in this group.

I have bad reactions to most pain meds so I can't take them. Although doctors and the pain management place pushes them on me every time I go. I just react badly to them. And also it seems like the doctor just want to treat pain but doesn't seem to care about the weakness, pressure feeling and numbness that I experience in my legs and arms.

After thirty years of this pain I finally just called a spinal surgeon myself since my doctors and the pain clinic just refused to refer me. They asked me to do two "current" Mris of my back which I did. But they did my thoracic spine and lumbar, but didn't include the si joints or my ribs which is part of my pain too.

Anyways my regular doctors said she was referring me to a neuro surgeon in Madison, Wi cuz of the herniated discs and annular tear.

So I called the hospital to make sure they got them and she hadn't. So after awhile she called back and said she found them and the doctor will look at them in the next couple days and call me back.

Literally ten minutes later the receptionist called me back again and said ok the surgeon looked at your MRI and said he can't help you surgically. And hung up.

I feel hopeless. There is no hope. All I can do is lay in bed all day and night and just be in pain. How can a surgeon not meet with you? Is this normal? Did you meet with yours before surgery?

I have so much pain in my upper back, lower back, ribs, hips, pelvis, groin, knees to the bottom of my feet. If I stand for more than a minute I have numbness all through both legs. I have numbness in my arms and I cannot sit at all.

How is this life? And nobody cares.

Ok, rant over. I know you are all in pain too. I just wonder how everyone got help? And if anyone else has the problem of not being able to take pain meds without bad reactions.

Is there anything natural that works? I have tried CBD, infrared mats, biomats, earthing mats, tens machines, all kind of supplements, chiros, accu, massage. I am trying to meditate, trying to look within to figure out any trauma that might be unresolved, figure out how to heal from within, lots of different diets.

Is this Lyme? Is this EDS? Is this something else? Is it a spiritual thing? WTF is wrong with me? I see so many Lyme patients traveling and living life and my whole life is in bed.

A big part of me is giving up. I can feel it. There feels like t here is nowhere to trun. A lot of shows I watch say you have to find the answer within yourself. I can't figure out how to do that. All I know if I lay here day after day getting weaker and stiffer. I dream about pain, I feel it all day and all night, I can't bend, twist, breath deeply, roll over in my sleep or lift anything. But if I try any meds they make me feel sicker and never take away the pain.

Sorry I know this post is not uplifting, but I'm a realist. And this is my reality.

God, please help me and all that are suffering in this world. There is too much suffering.

Wednesday, January 10, 2024

Seven Years Later

So I see it's been seven years since an update.

Well, I'm still here. I have made some really good memories with my family, friends and pets. I have had good days, and I have had bad.

I lost my Mom to pancreatic cancer. This loss has been so very hard. And in a way my brother and sister are gone too, they are still alive but I have lost them to addiction and mental illness. This last couple years has been hard on so many levels.

I have inherited a multitude of pets through everyone else's inability to take care of them and from two losses in the family, my Mom and brother in law. I just didn't' think I could take care of anymore pets so when my two 19 year old cats passed two summers ago and my Oliver who was over 19 and my blind poodle Missy, passed, I thought I would just be done with pets. It's gotten too hard for me to take care of them. But here I am, I have my mom's parrot and cat, and my sister's two dogs. I am doing my best to take care of all of them and I love them so, but man it's hard when you can't bend over or walk much. As I write this two of the dogs are sitting here staring at me whining, for what, I don't know. I guess it's time for treats.

Right now where I am at health wise, is basically just not well. My main issue continues to be my back. I just have back pain so bad that I can't sit at all. It's funny because when someone asks you to go do something with them, the first thing they always say is, "you can sit". That is usually the answer to anyone dealing with someone who is sick, they think that sitting makes things better. Well, with this back problem, I can't sit. At all. I can stand for about ten minutes. I can walk for about fifteen. I can lay down.

The problem is that laying down all day makes you weaker and makes your back hurt in a different way. It's just not healthy to not move around. So I work on finding a balance between moving around and laying down that won't hurt me or make me too weak. It's very hard.

As I wrote this, I have been in bed for almost two weeks, plus an ER visit for back pain and near fainting spell. They think I have food poisoning. I don't know what I did to my back, I just got this pressure in my lower back that started to grow. It hurts in my back and in my stomach. When I try to stand up my stomach muscles spasm and tighten. According to doctors this is because the muscles that spasm are trying to protect you from further injuring yourself. The part I don't understand is why no one can find what the injury is that my body is trying to protect.

MRIs show lots of bulging discs from the bottom of my spine to the top. Of course I have degenerating disc disease, doesn't everyone have this at 57, according to my doctors they do. I also have arthritis. In my scans there are lots of words like "minimal bulging" and "minor narrowing" and so my doctors just chalk it up to, "it's normal aging process" it isn't that bad.

But, my pain is bad. Very bad. It is life altering and making me isolated. I just want to play with my grandkids. I want to go on walks with my dogs. Last summer I did lots of these things, when I could. I pushed myself. But that pushing myself, while making great memories, takes a toll on my body. My prolapsed bladder/rectum got worse, my back pain got worse. I just don't understand.

So here I am in bed, another day writing this. I'm shaky from steroids and my stomach hurts from all my natural homeopathic drops, and I just still feel sick. No matter what I do.

I watch my "spiritual" videos all day to keep my mind in a good place. It's hard to do that sometimes when stuck in this sick body. But knowing one day I won't be stuck in it, is a saving grace. Not that I want to die. I want to spend more time with my kids, grandkids and pets. But I do believe after this life is something much better. Although I do believe we cycle through many lifetimes on this earth, so I just want to do this one right so I don't have to keep repeating "sick adventures."

To keep myself busy, I do a lot of art. My kids bought me an iPad with the Procreate app so I can lay in bed and draw! Best gift ever. When I feel well enough to drive, I go on "picture drives." I will pull over at the farms or my favorite lakes and fishing spots and just shoot away with my camera.

I keep myself busy. My body doesn't work but my mind does so I do a lot around art. I have a paranormal blog, a photography blog and an art blog. I have several Zazzle stores that I run and lots of YouTube channels. My busiest YouTube channel is called, "Happy Zazzling" and I had originally made it when I was trying to teach a couple other of my chronically ill friends how to make some passive income, as we are all broke.

So I was having a hard time explaining things in text over chat so I made a couple tutorial videos. Well now I have over 1,000 subscribers and that keeps me very busy. It takes forever to make a video, especially on my slow computer. and answering lots of messages daily.

But it distracts me from pain. Pain meds make me sick. I just can't take them, any of them. So I use distraction a lot. Keeping my mind busy. So art and photography and talking to others in the art/photography community is a Godsend.

So anyways, that is my update. That is what I am up to now. I hope whoever is reading this is doing well. See ya soon!