Tag Archives: Lyme disease

Update: Heart Monitor Implant, Walking Pneumonia … 

3 Jun


Loop Recorder 

I’m getting my heart monitor known as a loop recorder procedure on June 14th. I had the 2 week Zio monitor recently but as soon as I took it off I had the episode. So this loop recorder will be implanted under my skin and record my heart for 3 years. We are hoping to catch any arythmia or abnormalities (or more like catch nothing). If there is no arythmia in the next 3 years my cardiologist says it’s more likely a neurological issue. The implant involves a shot of lidocaine to the chest area I believe and they cut a small incision and inject the loop recorder under the skin, near the heart. 

Walking Pneumnoia 

After suffering from a normal illness/lung infection for a week I suddenly had 104 fever and was hallucinating. I couldn’t talk, walk, see…. so my mom took me to a walk in prompt care where my doctor diagnosed me with what he thought was “bronchitis or walking pneumonia”. He gave me antibiotics but it was the family of abx that causes my restless leg syndrome to be much worse so I didn’t sleep for a week. He then switched me to Z-Pack (Zithromax) that was much better for my restless leg syndrome (RLS). I’m finally feeling a bit better getting the infection out of my lungs and no longer coughing or having low oxygen issues. For some reason at the doctors my Oxygen was going from 81%-86% which is crazy low but I think maybe the surgical mask I had on could have lowered my oxygen even worse? The walking pneumonia is getting better so back to my regular chronic illnesses and symptoms. The only difference I notice with the flu or pneumonia is the wet cough, colored phlegm, and higher fever than my usual daily fever. The other symptoms I already have daily so don’t really notice the change or notice when I am getting “normal people sick”. My temperature normally runs 94-95 degrees during the day and 100 degrees at night until usually 4-6am when I fall asleep. 

Neurologist Visit 

Saw my neurologist today. He wants to try and get me back on something for restless leg syndrome. I’ve tried many meds in the past like Lyrica but they made me gain weight and dizzier than usual. So I’m not sure which Med he’s giving me. He’s doing a sleep study on me soon with a pulseOx at home. I will also be getting more MRI updates on my C-Spine (neck), mid back and lumbar. He wants a brain scan but I just had one done two months ago. He’s trying to keep me from being “spastic”. So far the Keppra seems to be helping the myoclonic seizures. The heat of summer always makes me more exhausted than usual or dizzy so I just want to sleep all day. Lupus and the sun don’t mix so I don’t usually go out back I just stay on the couch or in bed. 
Hopefully things will start to get better. Like usual whe it rains it pours around our house. A lot of bad things going on and just trying to stay positive. Got to keep in mind it can be worse. Keep up the fight everyone! 

Modern Family Cast Does The Lyme Disease Challenge 

13 Apr


#LymeDiseaseChallenge 

Update & Tips Over The Years 

18 Mar

Cardiologist Update 

The heart doctor said that my two week monitor didn’t catch the passing out episodes of any arrhythmia. The issues happened before and after the monitor was on. So she suggests I get a heart monitor implant that goes under the chest skin for 3 years. She said my heart was very slow at night sleeping and very high during he say when awake. She said my heart skips beats but that is “normal”. The 50mg of Losartan is keeping my tachycardia down to the 130-140/100-90 range so my BP is much better than it has been since I was 13 years old. I was worried that long with tachycardia my heart would be a mess but so far it’s not as bad as assumed. Cardio said I have some “mild leaky valves”. 

Next up is a nuclear stress test. Then a sonogram of the carotid arteries in my neck. And then I choose if I want the heart monitor “surgery” which looks very simple. I think I will do it since my episodes come and go. The episodes I’m talking about are the ones that are not POTS but the longer fainting episodes. With POTS I stand up and pass out, wake up on the floor and go sit back down. With the other episodes I start seeing tunnel vision, hear words backwards, can’t understand anyone, can’t move, I HAVE to lay down even if it’s a dirty bathroom floor and I eventually pass out for a while. The episodes last about 45 minutes. My skin turns paler white to gray, I’ve been told I look “dead” and one lady thought I had passed away calling 911. It’s happened about 5-6 times since last year. Cardio thinks it’s brain or heart related. 

It’s good to keep testing and rule things out. The more I test the more illnesses I’m diagnosed with. Don’t let anyone tell you nothing is wrong if you know your body and know you are suffering. 

 Some Tips I’ve noticed over the years:

  • IV Rocefin (ceftraxione) can cause your gallbladder issues and to have to be removed. Ask your doctor before you use it. 
  • Doxycycline and the sun don’t mix, I still have a scar on my forehead from being in the sun for a few minutes while on Doxy. 
  • Being too aggressive on antibiotics, using too many at once and high doses caused thrush, severe candida and c-diff. It took about 8 months to heal from all and I had to stop all antibiotics. I was on a ton of probiotics and took all precautions before started the aggressive treatment but it didn’t help. I had a flesh eating type of thing that was not only scary but very painful. 

Amazon Helping With Lyme Disease 

15 Mar


Thank you Amazon. I’m a Prime Member and I love Amazon but this really did make me smile.

Lyme Disease Commercial (Awareness) 

22 Feb

GoFundMe – Medical Help 

5 Jan

  

Still Need Help 
I’m set to move to the East Coast in two weeks. My parents are taking care of my baby niece now and they are barely making it so I’m moving out on my own to save them money. I will also be moving to be with my girlfriend who nearly died recently from renal failure. She was born with only one kidney. She is a cancer survivor, chronically ill and still trying to be a nurse to help others, she’s truly amazing. I want to be there with her to show her that she is loved, appreciated and I would like to take care of her. She deserves to be treated like a princess. Unfortunately I will be barely making it on my fixed income so I need to help to pay my medical bills and IVIG. I’m still looking for any help. Thank you in advance. Update posting next…. 
The link to my page: GOFUNDME/LYMEINSIDE 

  

Please Register & Share 

17 Nov

  

I would highly recommend registering and taking the two Lyme disease surveys so we can get the impact of Lyme disease out there. It took me maybe 10 minutes from bed on my tablet. 

Sign up here: https://www.mylymedata.org