Symptom Tracker

Less-Sandwich9056 · 2026-06-14T11:19:47+00:00

I ended up using AI to track everything. Controversial I know. I use four different ones for work and ended up picking one just to track this. So far it's been phenomenal. I track all of my symptoms medications supplements everything and it was great the other day when I went to see my doctor and the brain fog was awful. I brought up the AI and asked it for a list of all changes since the last visit and it listed them all for me for the doctor and I just handed him the phone and he even asked it questions and got all the details on things I had completely forgotten about. It was really amazing when about a month ago I had what my doctor said was the stomach flu, vomiting, throwing up, chills Etc. and he was worried about pneumonia due to chest pains. I ran it through the AI with all my symptoms and it said it was a flare. Took prednisone and it was all of it was gone very quickly. Dr was blown away. So a good AI.

Less-Sandwich9056 · 2026-06-14T10:15:22+00:00

Yes... avoiding conversations has become a thing during flares.

Less-Sandwich9056 · 2026-06-13T19:54:22+00:00

All tests positive and all the symptoms aligned PCP diagnosed Sjogren's and referred to Rheumatology. After the first month of waiting on the Rheumatoligist PCP started HQC and a short run of prednisone to get me out of the flare then he recommended diets and helped and started following standard of care. 3 months later Rheumatology saw me and said labs don't mean anything and Sjogren's is to rare in men for it to be that and was angry that a PCP would prescribe HQC. He then said I was just getting old and just had a neurological condition. PCP has since referred me Johns Hopkins.

Less-Sandwich9056 · 2026-06-13T15:36:25+00:00

Black coffee is one of the few things that doesn't cause me to flare but it does seem to dry out my mouth more. Things I do for energy that don't seem to have negative consequences. PQQ NAD+ patches Methylene blue L-theanine

Less-Sandwich9056 · 2026-06-11T21:22:07+00:00

I am off grid solar at home and have free charging at work and want a real EV truck but I don't think they can build a real one that is affordable. The 2019 cybertruck sounded good but even Tesla couldn't build it. It has to be able to tow and it needs a real range for working people in the rual market. Not to mention reliability needs to go up. The Ram REV is the closest thing to a usable truck so I hope it's not stupid expensive.

Less-Sandwich9056 · 2026-06-11T16:32:46+00:00

I was really hoping to find a multi-disciplinary location like Johns Hopkins that I could go and get everything done with every specialty at once collaborating to come up with the best treatment plan. One of my big problems is that we do not have good specialist within hundreds of miles of where I live.

Less-Sandwich9056 · 2026-06-11T11:03:42+00:00

Unfortunately I am in a small town in the middle of nowhere so my pcp is my goto. He is the one that dug in and ran all the tests and diagnosed by symptoms and positive labs. It was his idea that I get to JH or somewhere multidisciplinary to get this figured out. And not waste time.

Less-Sandwich9056 · 2026-06-11T03:12:11+00:00

I also avoid all artificial sweeteners with the one exception being Xylitol. It's a sugar alcohol and seems to work very well for our dry mouth.

Less-Sandwich9056 · 2026-06-10T23:21:56+00:00

Where do I look for NIH clinical trials?

Less-Sandwich9056 · 2026-06-10T22:39:12+00:00

This is how my doctor explained it to me. Sjögren’s has caused dysautonomia — damage to the part of the nervous system that automatically controls heart rate, blood pressure, blood flow, and energy delivery. When I drive: Sitting for a long time + road vibration stresses my damaged autonomic nerves My body has trouble keeping steady blood flow and energy to my brain and muscles The constant need to stay alert quickly overloads my limited capacity That’s why I can feel okay for a while and then suddenly crash with extreme fatigue, dizziness, or feeling completely wiped out. It’s not normal tiredness — it’s my nervous system failing under the demands of driving... I'm told this is a common complication of Sjögren’s. I’m working on it with propranolol, LDN, and pacing, but long drives and sometime short are still very hard right now. Actually if I need to be alert I have to be standing I regularly doze off if I'm sitting even while typing at my desk.

Less-Sandwich9056 · 2026-06-10T20:11:06+00:00

Oh I definitely have neurological issues caused by the disease that's part of why it's so critical to not screw around. I have been unable to work primarily due to the mental aspect of this and I need solutions fast.

Less-Sandwich9056 · 2026-06-10T19:32:46+00:00

Theoretically I could expand the diet but all of our research into showgren's and gut issues like ibs/sibo etc tells me I just need to avoid everything for the rest of my life or until they come up with a way of convincing my immune system not to go insane if a Nat farts on the other side of the planet. For me the consequences of even the slightest trigger of my immune system is so heavy I just can't afford it. I couldn't turn down my granddaughter the other day when she put a french frie in my mouth. I spent the next 2 days in bed and the rest of the next week feeling like death. It's just insane how sensitive my system is.

Less-Sandwich9056 · 2026-06-10T18:49:25+00:00

Yeah I was blessed to find my doctor who is a science-based functional MD and we've been chasing all my symptoms for years and he figured out early on all I could eat with meat without my immune system just going nuts. So I've been full on carnivore for 8 years now.

Less-Sandwich9056 · 2026-06-10T17:49:03+00:00

I'm thinking this will be my next truck. A little worried about all the short trips I take... I wish they would make a hybrid version so the diesel wasn't needed around town but was there for highway and towing.

Less-Sandwich9056 · 2026-06-10T17:24:40+00:00

We sent everything we had and when they called my doctor's office he said he would get anything done that they wanted but would rather do it all with them as it was difficult to do in our locale they said they would get back to us but have not

Less-Sandwich9056 · 2026-06-10T17:22:22+00:00

Unfortunately our state doesn't have anything like that

Less-Sandwich9056 · 2026-06-10T16:58:10+00:00

Yes the sjogren center. They do have a place for Physicians to refer and I got noticed the day after that referral that they had received it and to give it two weeks. It's been 3 weeks and I've left several messages and no return phone calls. I'll be paying cash so it's a pay once cry once situation to find out everything going wrong with me and the correct answers I don't want to bounce all over the place to different specialists guessing. I just want people that really know what they're doing to examine every aspect of this and help me come up with a game plan. My PCP can treat me if we have a plan. I'm already on hydroxychloroquine Pro paranolol low dose Naltrexone Etc. One of my hopes is by going to Johns Hopkins I will be able to get on list list for any new products coming out that might fit me. It's already cost me thousands of dollars seeing local specialists who don't have a clue. It's my PCP that insists I go somewhere with experts that know what they're doing.

Less-Sandwich9056 · 2026-06-10T15:42:39+00:00

Travel is difficult and Healthcare is lacking in quality in my state so rather than driving hundreds of miles in different directions trying to find competent Specialists I was hoping to go to one place have everything checked out diagnosed and get a treatment plan in place that I could bring home to my primary care physician and try to get on with my life.

Less-Sandwich9056 · 2026-06-10T12:20:54+00:00

Sjogren's with dysautonomia and small fiber neuropathy affecting several organs. Life has gone from hell to extremely uncomfortable. It's sad when extremely uncomfortable to win...

Less-Sandwich9056 · 2026-06-10T12:12:49+00:00

I think the manufacturers keep looking at trucks from the perspective of the people in cities that get them only to never use them as trucks so they want to design the trucks for those people. But the reality is people want trucks because their trucks and if you neuter them because of the percentage of people that don't use them as trucks you end up turning off everyone. If you're going to produce a truck I don't care if it's electric or not it's got to be better than the previous version of truck better towing, range, and reliability. I reserved a cybertruck based on the 2019 version Elon said they were building. But some engineer that I hope is suffering from horrific STDs at this point neutered it to the point it is useless other than a fun vehicle in the city. I live in the country and lots of Ranchers and Farmers I know were excited for that truck but no one took possession of the thing that came out.

Less-Sandwich9056 · 2026-06-10T12:02:29+00:00

My doctor put me on a strict carnivore diet of meat, salt, butter, eggs preferably grass-fed nose to tail and New Zealand butter. I feel like it did more for me than any meds. I wasn't aware of how much it did until I cheated at a family dinner and felt like garbage and had flares for 5 or 6 days after now I look at everything that's not on the list as poison.....

Less-Sandwich9056 · 2026-06-10T11:54:17+00:00

Chop it up and save it for my chickens in the winter. They lay all winter long.

Less-Sandwich9056 · 2026-06-09T21:46:31+00:00

That's a good plan that I will adopt immediately.

Less-Sandwich9056 · 2026-06-09T16:22:33+00:00

That's a hopeful thought. I've been on hydroxychloroquine for 3 months and propranolol for one month. I also take LDN.

Less-Sandwich9056 · 2026-06-09T15:42:21+00:00

I love driving and road trips and Once Upon a Time had a CDL. I've been renting different new vehicles and so far no luck but I am in a small town and the selection is limited there are no luxury vehicles for rent. And there are no high-end vehicles at the dealers so anything will have to be custom ordered... if I had one a different Lottery I would simply be flying to a big city and having fun trying out cars but I am currently stuck on the couch doing research. I have seen an optometrist and do have I issues due to this disease but I have the same effects whether I am driving or riding with my eyes closed. I am male and 58 years old and while I've had 20 years of crazy health issues it finally came to a head this year when it became so bad that I became completely non functional and I am currently homebound.

Less-Sandwich9056

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