Have Covid & Aseptic Meningitis

Got Covid 2 Weeks Ago

I don’t leave the house but when I do I always mask up, wear gloves and use hand sanitizer. My dad went to one event and brought home Covid. I’m not sure which strain it is. My entire family is sick and are barely feeling better after two weeks. They have a cough and stuffy nose.

I ended up having 105+ fever, 94.1 temps which is hypothermia, chills, hallucinations, meningitis, and it was a living hell. That’s why I’m so afraid of Covid. I thought I was dying. I almost went to the hospital a few times but they wanted me to go alone and wait in the waiting room for hours although I couldn’t talk or be in the light, couldn’t handle sound, couldn’t see… I slept for 20 plus hours a day for the first week and lost 10 pounds. I’m still very dizzy, want to fall over, congested, can’t see well, feel decent one minute than worse the next. It just won’t go away. Be safe out there! Especially if you have an immunodeficiency because Covid will wipe you out.

I took Paxlovid at first but my doctors said that wasn’t good for me because of my illnesses and meds I’m on. So they switched me to Lagevrio 200mg (4 capsules twice a day for 5 days)

Here’s a note I wrote a while back while sicker:

October 19-20+ (2023) Covid

Bad chills, fever, soaked entire bed in sweat 3 times one day, severe migraine everyday, extremely dizzy, myalgia, out of body experience, hallucinations, flu symptoms, could barely move, inflammation, throat hurts bad can’t swallow night 3, my pulse is back up to 80-105 (was averaging 49-50+), eyes hurt, hands hurt, slept 18-20 hours, freezing, non stop headache using ibuprofen 800 + Tylenol, temp 94.1 & 96.7 …. Rest of family has cold like symptoms. Week later stuff in lungs, cough, stiff neck, pain down my base of my skull to shoulder blades (nerve), nail behind knee cap feeling is back, eyes are red…..

Temperatures; 

Lowest: 94.1, 94.5, 94.9, 96.1 (hypothermia) 

Highest: 104.5, 105+ (hyperthermia) 

Oxygen: 94%

Pulse: 110 

New Diagnosis- Specific Antibody Deficiency (S.A.D.)

Specific Antibody Deficiency (S.A.D.) & SubQ (SCIG)

If you are a reader you know that I already have Primary Immunodeficiency (PIDD) and was on IVIG for years. Well now I’ve been diagnosed with another immune disorder just yesterday by a new immunologist. He says I have Specific Antibody Deficiency or SAD which means that Individuals with specific antibody deficiency cannot produce antibodies to specific types of microorganisms that cause respiratory infections. For some reason my IG went back up but it won’t stay that way. My body can look like it’s healed itself one day and the next day look like I have sepsis and I’m dying. So I’m not so sure about this. I will be going on SCIG or SubQ for at least 4 months and start with a home nurse again.

I’m still very weak and have been struggling since I started this blog in mid 2000’s. I haven’t treated for Lyme in a long time. I get very sick often and each day I feel like a shell of my former self. I don’t leave the house except for appointments. I’ve been diagnosed with a lot if things I haven’t updated on here because I forget and have memory loss. Let’s see how this SCIG goes… it’s a slow injection to a different site on your body each infusion.

CRPS/RSD – Burning, Inflammation, Pain …

The last two years I just feel so inflamed. My eyes burn every single day, they hurt, I get temporary vision issues. I went to see a optometrist and he said I have excellent vision for my age and he found no vision or eye issues. I do have cranial pressure behind my eyes and chronic sinusitis. I have high CSF (spinal fluid) pressure. I use very expensive and many kinds of eye drops but nothing helps.

I have a genetic dehydration issue so that dries my eyes out. There hasn’t been one day without my CRPS/RSD flaring up. My Trigeminal Neuralgia also flares up on both sides of my head and is painful. So there are a lot of nerve issues going on. My arms feel like the skin is burned, under the facia it feels like the muscle and fat are being peeled off my arms. It is hard to describe but the best word I can think of is “torture”.

It is a sharp and dull pain non-stop all day and night 365…. and my morphine and Norco don’t do much to help the pain but doctors never seen to believe me or care. Doctors say ”well maybe tomorrow will be better“ Instead of trying things that might work. I have tried IV therapy, lotions, patches, gels, meds, injections but nothing relieves the pain much. Nerve meds don’t help much and make me groggy when I’m already beyond exhausted.

For us suffering from this… it is an everyday struggle and not much we can do. I did feel a bit better after an infusion of higher dose Ketamine but doctors refuse to let me do it again. So I just burn and hurt and it is part of life. Hopefully one day there is a cure or something to help. I have been offered to go to Italy and Germany for IV therapy and help but cannot afford that at all. My whole body and face burn as well everyday. I also overheat and sweat a lot.

Quick Update: Exhausted

Since the last time I wrote something (not sure when that was ) my memory has been bad and I am just non-stop exhausted. I’m lethargic but not lazy just very sluggish, listless, takes all my energy to do the smallest thing. I do get sleep now since getting my Bi-PAP machine and addressing my severe sleep apnea but I just don’t ever feel rested.

my eyes burn and I cant see well despite having 20/12 vision which is excellent. I can fall asleep talking. I will nod out watching TV all day. Watching TV is all I do daily, I get up, lay in my recliner chair and watch tv then go to bed. That’s my life.

My radiculopathy is bad so it is hard to walk. Radiculopathy includes pain, weakness, numbness and tingling. I have severe spinal stenosis in my neck in my spinal cord and where the nerve root runs through. It is hard to stand up for more than 5 minutes.

I just had an echocardiogram recently so I’m not sure if it is heart related but I am just simply beyond exhausted every single day and night. It is taking a lot just to write this and I am ready to go fall asleep.

I hope you are all well and doing much better. I wish you all healing, love and peace.

Quick Update

I got an echocardiogram recently and the results. I have leaking in a valve and thickening near the apex of my heart. It can be caused by the fact I stop breathing in my sleep or hypertension…etc. it looked pretty good besides that. The looper recorder implanted in my chest stopped working in January (batteries are dead) so I will be getting that one taken out and a new implant or recorder put back in. Unfortunately it died when I was having a few episodes over the months so we didn’t catch those.

I was driving quickly down the street one day to get my little sister some food when I started to feel my heart palpitate….. so I coughed to get it back in rhythm and it started flopping like a fish…so I coughed again…. started to get tunnel vision and feel like I was going to pass out …. finally the third cough my heart kicked back into sinus rhythm just as the light turned green. Got lucky but it was scary while trying to drive and also one of many reasons I don’t drive much.

My Bi-PAP (exchanged the C-PAP) doesn’t seem to be helping much. I have severe obstructive and central sleep apnea. My cardiologist suggests that I might need a pace maker for my lungs basically. A breathing pacemaker, also known as a diaphragm pacer, is a phrenic nerve stimulator which can help you breathe. It consists of surgically implanted electrodes and receivers and an external transmitter which sends radio signals to the implants. So might need to get that procedure.

I will be going to UCSF soon to see a new neurologist and immunologist. My neck hurts a lot and I hope I won’t be paralyzed. We found an old MRI which has underlined that I have Intra Cranial Hypertension (I make too much spinal fluid) so we will be looking into that. My last neurologist failed to tell me I had it.

hope to be back soon with more updates. Hope you all are as well as you can be.

Trigeminal Neuralgia Update

Trigeminal Neuralgia 

Years of having sensitive teeth/mouth to eating or drinking anything hot or cold on my right side. So bad I couldn’t have ice cream until it was room temp and water has to be room temp. When I had a flare up the nerve went straight to that tooth. After my first big attack my teeth and mouth not as sensitive, now I know why, TN! My grandma had TN as well and she tried to take her life the pain was so bad and drove her literally insane. It’s called the “suicide disease” for a reason. She had surgery that left her face numb and she couldn’t eat soup or liquids very well on one side without drooling. Surgery and meds didn’t help her much the poor thing. 

My First Flare Up (June 2019, Pain Scale 10 of 10) 

Started on the side of head behind my ear (right side) and slowly burned and severe pain melted down my face. Went into my right eye socket at first and pain all around my right eye. Then within an hour worked down to my cheek bone and upper jaw. Then went into teeth on right side and every tooth on that side felt like it was going to explode from the inside out. The left side felt normal. Then the pain worked down to the top of my tongue and roof of my mouth. It’s weird feeling pain in places you didn’t know could have pain. Hour later it was on the bottom of my tongue and bottom of my jaw bone. 

Pain was a 10/10 (12 of 10) so bad I thought about killing myself after two days of that pain non-stop, relentless, severe pain! This was this worst pain I’ve even had and probably worse than CRPS/RSD in my arms as it lasted longer. Much worse than any migraine. The pain was so bad I was losing consciousness and screamed in pain. Doctors and hospitals don’t know how to help nor do they believe you when you are crying in pain and can’t talk. 

The ONLY thing that helped me at that time was ice cold water I held in my mouth each sip until it got to room temp and stopped working. I took extra morphine, extra Norco, extra ibuprofen, extra nerve pain meds and it didn’t do much maybe made the pain go down one number if that. 

Went to the ER they gave me elavil and toradol shot in my arm. That didn’t do anything. 

Medicine given that finally helped dats later by a doctor: Trileptal (Oxcarbazepine) 150mg 2 pills twice daily (4 total or 600 mg daily). 

Attacks in between (2019 – 2021) 

Burning on Right & Left side now, throbbing from head, eye socket, and down to my mouth. Side of my head where the trigeminal nerve is begins to burn and my head feels hot and I get red in my face. Heat and cold did nothing to help. Took my meds and pain went away after a half a day. This happened a few times as I prayed that severe pain would never come back. It’s so bad it gave me PTSD and I fear it coming back or being in that situation again where nothing or nobody can help you as you scream in pain. You never know when it will come back and flare up. 

March 5th 2021 (second BIG attack, Pain Scale 8 of 10)

Started feeling the sensitivity in my teeth again and hoped it wasn’t coming back. Days later felt the burning sensation. Then one night, March 2nd it started to hurt bad an 8 of 10. Which for me is bad but for a normal person it’s likely a 9 of 10 close to being such bad pain you can pass out. But it was a bit less than the first attack with help from medication. I took an extra 15mg morphine, 10-325 Norco, extra 2 Trileptal 150mg each. It took it down to a 7 of 10. 

I got maybe an hour of sleep. Day 2 it was a 7 of 10 all day and at night 8 of 10. Didn’t sleep night 2 either. Day 3 it was a 7 of 10 at night and slept maybe 3 hours. Took extra meds every night (cold and heat didn’t help), laying on my side in bed hurt worse no matter which side. Day 4 is today and I went to see my doctor. He prescribed Lyrica 50mg to go with Trileptal, my mom picked it up and I took one just one hour ago. So far the pain has gone down a little but now my face is burning and I’m sweating. I feel drowsy but could be from no sleep. 

That’s the update for now but I’m still having a flare-up and in pain.

• 

New Diagnoses – Severe Sleep Apnea

My latest batch of tests and already the first one came back as positive for having severe sleep apnea. My AHI was a 77. I will post the index and scale below but 30+ is severe, mine was over double. So I’m getting a C-Pap Machine, the model I will post below and I’m getting a So Clean 2. I hear it can get mold, cause dryness or sinus infections but I already have all of that so it might make things worse but I‘m hoping I sleep better and feel a bit better.

I was told many times by my cardiologist that my heart races at night and looks as if I’m “running a marathon in my sleep” so this hopefully explains that problem. I know I do wake up many times during the night and haven’t slept peacefully as long as I can remember. I used to have insomnia. I have woke up many times feeling as if my heart is pounding out of my chest, I can’t breathe and feel scared but had no nightmares. Or having sleep paralysis where I can see my room and feel awake but can’t move.

I haven’t been on in a while but a lot of things have happened since my last post. I’ve had a lot of bad things happen and starting to feel worse again. Not sure if I updated that I aspirated bile from enteritis one night went to the hospital. Trigeminal Neuralgia brining in nerves on both sides of my face now not just one side anymore. Sinusitis …. can’t remember all that’s happened since last post but a few hospital trips. I hope you all are finding better days and keep up the good fight. We can do this.

Quick Update: Disulfiram

 

I am not feeling well so I will keep this quick. My Lyme is acting up again worse than usual so my doctor gave me Disulfiram (Antabuse) to try. He said 15 others have tried it in his building and some have had liver issues. Very few feel any better. I haven’t tried it yet but with it you can’t have ANY alcohol, even vinegar or vanilla extract, shaving cream…etc. I don’t drink but need to be careful of others.

Had a brain MRI recently but don’t have the results yet. Since I last left off I’ve had numerous MRIs, CT scans…etc. Went to the ER in an ambulance for vomiting up bile and aspirated it in my sleep so that was a nightmare. I’m on Pepcid and zofran.

Nothing has got better, everyday is still a struggle and I feel very sick. I’m still trying to stay positive but I lost my Primary doctor who it took me 30+ years to find him and he was my best doctor ever but he’s moving out of the country. I have triple covered which is expensive but nobody seems to accept my insurance now of Medicare, Medicaid and Medigap. I’m not sure why. So I can’t seem to find anyone to take me.

 

I cant think so got to go…. hang in there everyone

Quick Update & Tips On Keeping Your Mind Busy While Being Disabled

Quick Update

Sorry I haven’t been around much or posting new treatments or tips. I haven’t really been on any new Lyme disease treatments since my doctor said my case was too late stage and went untreated too long so there wasn’t much left to try expect stem cell which I cannot afford. I still just take low 100mg maintenance doses of minocycline, doxy and tinindazole as needed.

I still can’t get IVIG covered again although I’m still in a study program so I’ve been weaker. My heart has been the focus and seizures or neurological issues. So I’m using 1000mg of Keppra. I noticed when I ran out and only took half a dose I had worse tremors, involuntary movements, throwing things on accident and my hand coordination was off so I accidentally hit my hands on things pretty hard bruising them or breaking veins. Other than that just been sitting at home and still fighting.

Tips For Those New To Disability, Homebound or Bedridden

If you are learning to deal with being disabled, homebound, bedridden or new to illness and not sure how to take your mind off the bad things here are some tips that have helped me over the years. In 2009 a was forced to medical retire & became bedridden & disabled. My whole life changed & I literally lost everything. What kept my mind off things was finding a hobby I could do even though I could barely see or type.

Many years ago I started this blog to share my illness journey with others & give tips. When I could no longer keep up with my blog I dedicated all my time to art and my sports account. Art is a good therapy when you just want to be alone or zone out for a while & take your mind off things. I also started adding many different music libraries on my iPad & listen to a ton of music. I have some to relax me for anxiety & music for every mood. I used to work so much I rarely had time for tv so now I use my time binge watching series & shows can really take you away.

There are some really good ones that will keep you busy for months. I used to sell my art at a gallery for a football player. I bought a bunch of books but couldn’t read them as my memory got worse but if you can still read there are many good book series to keep you busy. Some of the new video games are almost like movies with actors playing parts in them & have a great story line to follow so they can keep you busy for months. Phone/tablet apps are getting better and many can keep you busy every single day where you come back to play, win, do art, chat & fun. Being disabled is depressing but you have to adapt to your new life & find something to pass the time so you don’t focus on all the sad/bad things you are going through. You can try photography, scrap booking, Pinterest hobbies, cooking…. so many options. Hope these tips help. Hang in there everyone we can do this.

Lyme, Fibromyalgia & More

Sorry I haven’t been active in a while. At the time I started this blog I was sharing my Lyme disease journey in real time and was only one small voice spreading awareness for many different illnesses and disabilities. Now that Lyme disease and other illnesses have finally hit main stream media you can find a lot of good info and stories on the internet. Lyme disease even has a commercial. We’ve come a long way but there is still much more to come. Getting rid of Wormser was one good move and the story above in the photo where chronic Lyme is now not just something used by patients.

Over the years since starting this blog, an old Facebook page I no longer use and a social media account I have tried to helped as many as I can by sharing my story. I would have never thought I would have saved around 6 lives from suicide over the years as well. People would reach out to me in dark times and I helped them through it until I knew mentally they were much better and most moved on with their lives and are happily married now. That’s a great feeling to know because of my support someone didn’t give up on life.

I’ve received countless private messages from strangers thanking me for helping them although I never knew I was. People that said one of my positive quotes reached them at the right time or my illness journey helped get them through theirs. That kind of thing really makes you feel good inside & I’m thankful & proud to all who reached out to me. I shed many tears over their letters. I remember a few started with “you don’t know me & I never comment to you or anyone but I just want to thank you for helping me get through these tough times”. Some I never heard from again just the one message but that one message is what keeps me doing what I do on social media. I’ve said I would be content even reaching or helping one person on this journey but I never thought I helped so many & it’s really a humbling experience & I wish I could meet them all & hug them.

There are pros & cons as I too have ran into evil people who could care less about anyone. I had a so called friend who said he supported me for 4 years. Then I come to find out behind my back he was posting videos mocking me, making fun of my surgery, illnesses, struggles & telling everyone I have “AIDS & cancer”. He tries to sabotage my social media page, he thinks anyone who is chronically ill is “better off dead” & we all just want sympathy not support. There are many others as well. You can say “I have cognitive issues so bare with me I might spell wrong or say something wrong” then you post something & they comment “you idiot you spelled that wrong you’re so pathetic”. If only they knew what we were going through daily but this generation seems to want to find errors to make everyone feel stupid or mock everyone. I’ve seen comments to someone with cancer “hurry and die”. So just do your best to ignore those kind of soulless people & keep being you & sharing your story regardless of a few rotten apples. You never know who you are inspiring.

I’m still waiting on two more opinions for my major neck surgery. My primary says “NO WAY DON’T DO IT, neuro issues, immunodeficiency issues risks are too high” while my neurologist says “get it done ASAP or risk death or being paralyzed from the neck down”. It’s a catch 22 medical issue so I’m damned if I do and damned if I don’t it’s only a matter of time/when it happens naturally or surgically. So that is heavy on my mind at night. Death and quadriplegic aren’t the best two options but there is a good chance I may clean up the spinal cord & get that one issue out of the way. It won’t make my quality of life much better but at least I don’t have to worry about each day waking up & not being able to walk or hitting my neck & risking paralyzes or death. Most people I know who had this surgery or issue are no longer alive so that’s what makes this hard for me on what to do.

My hypertension has been better since losartan daily and I, not passing out every time I stand up anymore. My Lyme is still active but I’m still doing the maintenance dose as needed of antibiotics. My CFS is acting up so I’m sleeping a good 14-16 hours a day. I still spend all my days and nights in bed or on the couch watching tv so nothing really changed since last post. But what has changed are the illnesses in the media like the two I will post below. For those that I haven’t talked to on here in a long time, I think of you all and wish you all the very best. Hang in there we can do this!