Autoimmune Disorders and Psychosis: A catatonic woman awakened after 20 years. Her st…

Of course there’s a connection between illness and mental health — I bet there going to discover one day that the *majority* of severe psychiatric patients have an underlying illness causing it;

Not just autoimmune, but there are infections that can wreck havoc on the brain too.

I’m so happy there’s a doctor who had compassion and put 2 and 2 together…

Posted in Uncategorized | Leave a comment

The Importance of School

Dearest Noah,

One thing to keep in mind, one of the major advantages of school is that they’re designed to take care of their students — not just academically, but emotionally and physically too.

There are support groups, clubs, activities,

as long as you maintain relationships with your professors (keeping them informed of how you’re doing and why you need what you need),

there’s a lot that exists in a school to help you.

I know there’s a lot going on, and a lot to consider,

but if something happens to me, and I can’t recover from this dog bite,

school might be the best place for you to be 🥰

Posted in Uncategorized | Leave a comment

Note to self: Friday before Memorial Day a good day to do bloodwork

I came to Cedars today to do some bloodwork (I need to do a Vanco Trough, it’s a timed test),

And I was shocked how empty the lab sitting area was for 4pm in the afternoon —

I mentioned my surprise to the gentleman checking me in,

“Yea, it’s because it’s a holiday weekend”.

Bingo ❤️ No matter how many years I’ve been sick, there’s always something new to learn 🥰

Posted in Uncategorized | Leave a comment

Different question for Chat GPT: what genes involved in white cell formation -> *Much* more interesting answ er ðŸ¤”

Now we’re on to something 🙂

So I decided to ask Chat GPT a more specific question, which genes are involved in white cell formation,

got a much more interesting answer–

Remember when I did Neupogen shots, and how for the first time in my life I had a white cell count in the 20s?

I remember that day, because it taught me that my body knows how to make white cells,

it’s just not doing it when it’s supposed to — there’s a trigger in the communication chain that isn’t working —

(Besides how it’s inherited, it’s not skipping a generation, another reason I feel this is a dominate gene, one gene is working okay and the other is not, which is why there is a partial response –)

Anyhow, Noah and I got to go someone who knows how to make sense of what this Chat GPT answer came up with — I really don’t understand enough about the immune system or genes, but I recognize some of the wording here and I feel like this is getting close to the problem —

Question I asked Chat GPT:

What genes are involved in generate white blood cells


Several genes play a crucial role in the generation and functioning of white blood cells. Here are some key genes associated with white blood cell development and function:

  1. GATA1: This gene is involved in the development of various blood cell lineages, including white blood cells. It plays a role in the differentiation and maturation of megakaryocytes, erythrocytes (red blood cells), and some types of white blood cells, such as eosinophils and basophils.
  2. GATA2: Mutations in this gene can lead to a condition called GATA2 deficiency, which affects the production and function of several types of white blood cells, including monocytes, dendritic cells, and natural killer cells. GATA2 is crucial for the development of these cell types in the bone marrow.
  3. CSF3R: This gene encodes the receptor for granulocyte colony-stimulating factor (G-CSF), a cytokine that regulates the production and differentiation of neutrophils, a type of white blood cell. Mutations in CSF3R can cause severe congenital neutropenia, a condition characterized by a reduced number of neutrophils in the blood. [This one I want to explore, given how I had a strong response to the Neupon shots, like the shot gave my body a tool that it’s in short supply]
  4. RAG1 and RAG2: These genes encode the proteins responsible for V(D)J recombination, a process that enables the generation of diverse antigen receptors in lymphocytes, including B cells and T cells. Mutations in RAG1 or RAG2 can result in severe combined immunodeficiency (SCID), a condition where both T and B cell function is impaired.
  5. IKZF1: This gene is involved in the development of lymphocytes, including B cells and certain types of T cells. Mutations in IKZF1 have been associated with a predisposition to acute lymphoblastic leukemia (ALL), a cancer of the white blood cells.
  6. CEBPA: This gene encodes a transcription factor that regulates the development and maturation of myeloid cells, including certain types of white blood cells like granulocytes and monocytes. Mutations in CEBPA can disrupt the differentiation of these cells, leading to disorders such as acute myeloid leukemia (AML).

These are just a few examples of genes involved in the generation and function of white blood cells. The development and regulation of white blood cells are complex processes involving multiple genes and signaling pathways.

Posted in Uncategorized | Leave a comment

Had to ask ChatGPT about my medical case: the answer was stuff we already know

For fun, I asked Chat GPT about my medical case, and pretty much gave the vague answers..

Interesting because Dr. Dutta once suggested he thought I might have a Lupus variant (hence why I joined Lupus LA a long time ago),

not entirely convinced that’s what I have, whenever the immune system is miswired autoimmune/immune all blurr together in one hot sticky mess —

Which is why immunoglobulin is so good, because it helps cover both 😍

What I asked:

Suggestions for a human immunodeficiency where the patient gets infections and does not create an elevated white cell blood count or a generate a fever

Chat GPT response:


If a patient exhibits symptoms of immunodeficiency where they experience frequent infections but do not show elevated white blood cell counts or generate a fever, it is important to consult a medical professional for a proper diagnosis and appropriate treatment. However, here are a few potential suggestions or considerations for further discussion with a healthcare provider:

  1. Primary Immunodeficiency Disorders: There are various genetic disorders that can lead to a weakened immune system. These disorders affect the development and function of immune cells. Conditions such as severe combined immunodeficiency (SCID), common variable immunodeficiency (CVID) [our diagnosis!] or specific antibody deficiencies could be explored.
  2. HIV/AIDS: While HIV infection often leads to decreased immune function and an increased susceptibility to infections, it may not always result in a high white blood cell count or fever. HIV attacks and destroys CD4+ T cells, which play a crucial role in the immune response. Consultation with a healthcare professional and appropriate testing can determine if HIV infection is a potential cause.
  3. Autoimmune Disorders: Some autoimmune conditions can cause immunodeficiency by interfering with the normal functioning of the immune system. Examples include systemic lupus erythematosus (SLE), rheumatoid arthritis, or certain types of vasculitis. [Interesting because I had an unusual Spect scan years ago and was diagnosed with vasculitis, and I’ve had positive ANA] These conditions may lead to an increased risk of infections without necessarily causing elevated white blood cell counts or fevers.
  4. Medications or Treatments: [Not this one since we’ve had it since birth.] Certain medications, such as corticosteroids or immunosuppressants used in autoimmune disorders, can suppress the immune system and increase susceptibility to infections. Chemotherapy or radiation therapy for cancer treatment may also weaken the immune system and result in a similar presentation.
  5. Chronic infections: [I wonder if I got diverticulitis Jan 2023 in part because I had Covid Dec 2022, and Covid might weaken immune system] Chronic infections, such as tuberculosis or certain fungal infections, can lead to a compromised immune system over time, making the individual more susceptible to other infections. These conditions may not always cause an elevated white blood cell count or fever.

Remember, these suggestions are meant to provide a starting point for discussions with healthcare professionals. Only a qualified medical practitioner can conduct the necessary tests and evaluations to determine the exact cause of the symptoms and recommend appropriate treatment.

Posted in Uncategorized | Leave a comment

My Doctor Said I Had 16 Months To Live. I’d Be De…

This article has an *excellent* point I didn’t realize — if you get diagnosed with cancer, get a second opinion *before* starting any kind of cancer therapy, because if you start a cancer therapy, it could make you ineligible for certain clinical trials that might be Mele effective than conventional therapies —

Hopefully you won’t need this advice ❤️

Posted in Uncategorized | Leave a comment

Dog bite problems – Saturday, April 22

I hope you’re doing well and your health is holding up as best as possible ❤️

I’m doing okay — I got bit by my neighbors dog on Saturday, April 22 when I was babysitting him (the bite took a little chunk of flesh out of my right hand middle finger)

and I’m still having issues.

Moments after the bite, I went to the ER for an evaluation and a tetanus shot, but the ER was busy so after waiting 5 hours I left the ER and on Sunday, April 25th I went to Rite Aid where they gave me a Tetanus shot.

(Admittedly, I did NOT clean the bite well — I was so shocked that he bit me, I didn’t know what to do, so I went into default mode, which was to go to Cedars…)

Before I went to the ER, I did immediately drip IV Invanz, which I have been doing since developing some suspected Diverticulitis I developed in January.

On the evening of Monday, April 24th Noah and I went to Canada, a trip that was important. So I brought the IV supplies with me, but as often happens, due to the choas of traveling I wasn’t the most compliant–

We returned on Monday, May 1st.

The issue is now, that my finger that I was bit is still a little swollen and it hurts, and I feel this pressure feeling in my arm.

Right now, I’m working on being super compliant, including getting dosed up probably on my immunoglobulin (which at the time of the bite I was way below proper dose level).

Due to my immundeficiency, I’m not going to have a lot of the red or pus like a normal person (ie the splinter in my toe when my toe looked normal), but I’m concerned that I’m still feeling pain over a week after the initial bite.

I was wondering if you think I should change my antibiotics, add a course of vancomycin, or do something different 🤔

(This is my neighbors dog, but I also had a bunch of rabies shots in the fall of 2005, so I’m not worried about rabies).

Thank you very much for your help and insight. Its the fact I still feel pain and pressure in my arm that concerns me. I hope things are going well for you 🙂

First video was taken soon after the bite. (The scratch on the other finger was a paper cut earlier in the day).

The second video was taken a few minutes ago, today Friday May 5, about 13 days after the initial bite.

Thank you ❤️

Posted in Uncategorized | Leave a comment

I’m home — feeling like a bank robber â¤ï¸

I’m back home again with a ton of medicine 🥰

Of all the gifts you’ve given me, this is one of the best ❤️

I’m doing okay, except I’m starting to have some strange symptoms on the same hand/arm as the one the dog bit me, I’m going to call Dr. Pitchon and Dr. Sherman tomorrow to talk with them about it…see what they think…

Thankfully Noah and I have enough medicine to be dosing ourselves up for awhile ❤️

I hope you’re doing well, and everything is okay–

We love you very much 🙂

Posted in Uncategorized | Leave a comment

We made it on the plane :)

First step done 🙂

Posted in Uncategorized | Leave a comment

Whose dog bit you?

Tofu bit me 🥲, he’s a neighbors dog I watch sometimes…he’s very scared and skittish, very very shy, so the first couple of times I watched him he spent the entire day under the bed in the den..

Tofu was sleeping peacefully next to me, which was such a beautiful bonding moment, so I went to pet him and golly gee that startled him and he wasn’t gonna have it 🤪

It was my fault, because I know how skittish he is, I should have left him alone 😍

I took this photo a few minutes before he bit me…

Everything is okay now ❤️ My finger still hurts but I’ve been pumped full of so many antibiotics there’s not much of anything growing in my body right now 🤪

On Apr 24, 2023, at 8:56 AM, JoeD wrote:

Which dog bit you?



Posted in Uncategorized | Leave a comment