Lyme Disease Commercial (Awareness) 

22 Feb

My “About Me” Update on Illnesses 

17 Feb

Added a few new diagnoses since I first started this blog. There are some illnesses I’m sure I’m forgetting on this photo and this doesn’t explain the hundreds of symptoms or acute issues I went to the hospital for or nearly died from like elderly pneumonia, aseptic meningitis…etc. I had mold issues but treated them and they are mild now. 

Septra, RLS, ECHO, Renal Duplex & More 

13 Feb

SEPTRA Causing Restless Leg Syndrome Increase?
Septra: Sulfamethoxazole / Trimethoprim, Common brands: Bactrim, Sulfatrim. I am doing a little test to see how I do pulsing three medications for Lyme instead of just doing my life-long “maintenance dose” of 100mg of Minocycline. My current Lyme doc and PCP have me doing Septra again, I’ve been on these meds a few times before. Due to my memory loss issues I couldn’t remember how I did on these meds or the side effects. The first week back on it I noticed for 3-4 days I couldn’t sleep at all due to Restless Leg Syndrome being increased. It was also causing the restlessness up into my spine. I was forced to get up and walk around after only getting maybe an hour of sleep each day. I couldn’t lay in bed due to the restlessness even though my brain and eyes were so exhausted I was ready to fall asleep walking.

The second noticeable side effect was diarrhea. I take VSL-3 and other probiotics but there is no stopping the IBS-D issues. As of lately my IBS-D has been changed to IBS-C due to OIC (morpheme causing constipation). So I went from one extreme to the next. I had severe IBS-D for 10-15 years but pain meds have helped block me up. I couldn’t tell you if one is better than the other. I’m pulsing Septra 5 days on and 5 days off with Minocycline and Tinidazole. I have no issues with Minocycline except extra dizziness. I also noticed my CFS is worse on Septra.
Echocardiogram & Renal Duplex 

I had a recent echocardiogram and haven’t received the results from my cardio doc yet but my PCP said I had a lot of “mild” issues. So I’m waiting until April for my heart monitor results and echo. I had a renal duplex today (sonogram of the kidneys and tubes). Didn’t get an results yet. Also did two blood labs. My cardiologist is trying to figure out what has caused my hypertension since I was 13, she thinks it may be genetic. The meds are helping to keep my BP near the “normal range” but I did have a long passing out episode this week again. My BP was 98/68 when that happened. My cardio doc thinks it’s my heart or seizures and not related to my POTS since it’s a different passing out issue.

Happy Holidays 

20 Dec

Happy Holidays to you all! 
I just wanted to take time to say thank you all for reading and commenting over the years. I wish I had more to share and things to be helpful but since I started this blog my brain has gotten worse and more pressure so I can’t write like I used to. I started this blog to share my story and to help others who are going through the same or may think they have Lyme, lupus, immunodeficiency, chronic illnesses…etc. I’ve seen a ton of doctors since starting this blog and I counted around 30+ doctors I have seen. 90% of them were not helpful or made my mom cry, were mean, kicked me out of their office….and all because they didn’t want to help me. I never provoked them or was mean to them, I only asked for help and was treated like a piece if trash. It’s a shame because I used to respect doctors. I currently found a doctor who truly cares about people. 

During the holidays is always a sad time for me because we no longer have family gatherings anymore in a long time. Even if we did I’m too ill to leave the house to visit them. I’m not the same person I used to be. I don’t remember what feeling “Normal” is like or having energy, feeling excited, or having all those feeling like a healthy me once had. Lyme, Lupus, PI, CFS, heart issues, brain issues have ruined my life. I sit here every night trying my best night to cry in front of my niece or let her see how sick I really am. I don’t remember a day in 8 years without a fever, burning face, headache, head pressure, pain from head to toe and being so exhausted I can’t move. 

I’m not looking forward to another tilt table test and puking and being dizzier than usual for days due to the test. I’m seeing my new cardiologist in a couple days. Might be DOIMG the stress test, heart monitor and more before Christmas. But I’m getting worse and nothing is stopping the Lyme. I don’t want to go back on IV antibiotics since it ruined my body last time. Had some very scary things happen that nobody should go through. For now I’m staying with my daily oral antibiotics for life. 

Let’s just hope something breaks through for Lyme and health issues one day. Don’t give up hope. Try to enjoy your Christmas and never give up! 

Brain MRI 

7 Dec

Had another brain MRI with GAD (dye/contrast) on Monday. I’ve had another concussion since my last brain MRI and CT scan and have been having those incoherent episodes and passing out I’ve been talking about. Last time they misdiagnosed a brain tumor, Parkinson’s and MS due to some Lyme lessons on my brain. I have a lot of brain pressure daily, short & long term memory loss, headaches, migraines and a lot of trouble with my brain so hopefully we find something. 

More Testing, New Doctors, Seizures? 

29 Nov

I had a follow up visit with my primary Doctor last week. He was concerned of my long fainting, incoherent episodes. So I will be seeing a cardiologist in December for my heart issues, testing and monitoring my heart. I will be getting another brain MRI on Monday. If you follow me you know I had one years ago for a possible brain tumor and movement disorder. I will be getting tested for seizure testing and seeing a new neurologist since my old neuro and neuro surgeon aren’t in the area. I had more blood work and my cholesterol was high but doc thinks it’s hereditary since I don’t eat a lot of food of junk food. 

I can’t remember all the testing but I will be also getting another tilt table test for my P.O.T.S. and it’s horrible. Last time I had that test I passed out which it was the test is for but I also puked the rest of the day and was more nauseated than normal. It really messes with my brain and makes me dizzy like an inner ear infection. I will also be getting a stress test but I cannot do the treadmill test since I’m barely able to walk as it I’m not sure the other options. There was more testing but I cannot recall. 

I lost another aunt today. It’s sad that my relatives are all passing away. Sometimes I fear I am dying and it’s hard to not think that when you feel so weak, tired and when I’m very ill. 

When I have these fainting episodes that last a long time they are not like my pots passing out. With my pots I stand up, faint, wake up on the ground wondering how I got there, stand up and I’m fine. These other episodes I feel coming on slowly, my heart slows down (my heart hates being slow it’s always tachycardia), I start seeing tunnel vision, I hear people talking to me but the words are backwards so I can’t understand them, I can’t answer back, can’t move, hard to breathe, louder ringing in my ears, sound is like it is in a tin can and I can’t sit down I have to lay down right away or I pass out. I will lay where I’m at for a good 10-30 minutes before I finally start to feel a little better and words start sounding in English again. It’s scary and I feel like I’m dying. My doctor thinks it may be my heart or grand mal seizures. That’s what happened the day I fell and hit my head while in CT in the store below my apartment and I got a concussion and slept for three days with nobody to check on me. 

I hope you all had a great thanksgiving and you find reasons to smile each day. If you stop and look around even on your worst day, life will give you something small but amazing to smile about. Take care my friends. Hope I can write more soon. 

I Finally Have A PCP – First Visit Went Well 

29 Oct

For many years now I’ve had trouble finding a Primary Doctor. My doctors I’ve had since I was a teen said they would no longer be my doctor because I was “too complicated” for them and they didn’t know how to help me. One doctor told me he was leaving me because he doesn’t like the fact I use medical marijuana. Every new a doctor appointment resulted in a failure. Most doctors told me they do not believe in Lyme disease or lupus and told me they will not be my doctor. 

After a long search my mom found a primary doctor who believes in Lyme and secretly will help me. He doesn’t take new patients so I was lucky to know somebody. This doctor also wants to use life-long oral antibiotic pulsing on me since he knows my Lyme is resistant to all treatments and my body won’t allow healing due to my primary immunodeficicey. 

My first visit was great! He is a very caring, compassionate doctor and I can tell he wants to help. He even said there was no need for me t travel so far to see my other Lyme doc or go to pain management that he will handle my RX for pain meds. He normally doesn’t prescribe pain meds I’m told so he did that just for me, what a great guy. He knows I’ve been on them since I was an early teen with arthritis and degenerative disc disease and bad knees. 

It was such a relief to see him input all my illnesses in his records without questioning me or my previous doctors or test results/records. He kept saying “oh my gosh you have that as well you have so many bad things going on at once that’s horrible”. He was really nice and my mom and I nearly teared up when he left the room because we are used to being yelled at, belittled and sent home without a new doctor. So this was a first.