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.

We Lost Fellow Lyme Warriors (RIP JV & Terry) 💔

It is with a heavy heat that I tell you that they have found a friend and fellow Lyme advocate, Jeffery Vandergrift, AKA JV from Dog House Radio. He was also known to his fans at Wild 94.9 as “JV” and was the host of his own radio show, called The JV Show. His body was found today at Pier 39 in San Francisco, California. Please keep his wife Natasha Yi in your thoughts and prayers.

JV was last seen on Feb. 23 at his Mission Bay home in San Francisco, prompting a region-wide search for him. I kept having thoughts of the Bay Bridge and water in my head. I kept thinking maybe he passed away and was near the Bay Bridge. It’s scary how accurate my thoughts were. I last heard from JV a week or two before he went missing when he told me “I love you, keep on fighting Lyme Disease”. We were fighting together and I gave him a lot of info on Lyme since he was newer to the treatment and Lyme disease.

JV says he was having thoughts that were not his own and he was having a tough time mentally with Lyme disease. He said he was doing what he could to get more attention on Lyme disease and even sent me a rant on about Lyme disease and why it isn’t taken care of like other illness by doctors and insurance. It’s sad his life ended this way. On his Twitter his location said “on the other side” and he wanted to spread a positive message to all before he left.

His last message to the world was “thank you for a wonderful life-filled with joy, laughs, pain & struggles. It’s been a great journey. Your support & prayers meant the world. Keep shining… love = ❤️ Compassion = 🧡 understanding = 💛 truth = 💚 forgiveness 💙 peace = 🤍 and hope = 💜 for others.

Thank you JV for being a friend, for listening, for fighting Lyme with me and for being an advocate for Lyme disease. I love you and miss you. You made the world laugh and smile. I listened to you every morning before work before my body gave out on me and I had to go on disability and you kept me going. I will continue to fight for you.

Lyme Warrior 2

We also lost another Lyme Warrior Terry Mayfield back in early March. She was a Lyme disease warrior many followed on social media… may she rest in peace 🕊️ 🙏 .. she had seizures and her heart couldn’t handle it. I get asked a lot by people “Lyme can kill you” “Lyme is that bad of an illness”? Yes, yes it can and does. After aggressive treatment since 2008 I feel maybe 10% better. I think I might actually have to go back on a more aggressive treatment as I seem to be getting worse. This is the second fellow Lyme warrior we’ve lost this month that I know of. 😢 #lymedisease #lyme #CLD #ticks #chroniclymedisease #lymediseaseawareness

I think my Lyme is getting worse now too. I’m feeling worse daily and might need to go back on treatment. Too many symptoms to list but my eyes burn and hurt and I can’t stay awake or even think to write this. I hope you all are finding better days. I, too sad to go on. Take care of yourselves fellow chronic illness warriors.

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

New Diagnosis: Trigeminal Neuralgia or Tic Douloureux

Trigeminal Neuralgia

I am writing this after suffering from one of the worst pains in the world for nearly 3 days straight. (See McGill Pain Scale Photo Below)

I remember growing up as a child hearing that my grandmother had tic douloureux and never really understood what it was. I remember my grandmother also tried to take her life a few times from being in so much pain and suffering. She had numerous surgeries that only made her worse and she had nerves severed in her face leaving half her face with no feeling. She passed away many years ago and before I was old enough to really get to spend time with her getting to know who she was.

Fast forward many years later and I now know first hand what tic douloureux is! My poor grandma had to suffer from this all those years?! I would say this was easily my top 3 worst pains ever and I’ve had at least 5 of the worst pains in the world on the scale which make broken bones look like child’s play. Pain in the 45-50 range on the McGill scale. My CRPS/RSD is the worst, Trigeminal Neuralgia, testicular torsion, Kidney stones … are my other top followed by back pains and severe chronic pain from illness.

The Night it Happened

It started I would say 4 days prior to the “non stop pain”. I’ve always had sensitive teeth but something was worse in my teeth and I felt like I had a Charlie horse under my chin. It was very sore. I started feeling a slight pain behind my eye in the eye socket. It slowly crept down my face each day to my upper jaw. 3 days ago I was watching tv around 6PM when I noticed the pain went from dull, uncomfortable pain to a sharp, stabbing pain. Then it started burning as if each nerve ending was going crazy. Having CRPS I know all about nerves and the pains they cause. I started to get scared something was wrong.

I went to bed and the pain increased. I’m pretty tolerant to pain but on my scale this was about a 7 which might be a 10 for most. I can handle a 7 as I’ve dealt with severe chronic pain most of my life. But then the feeling moved down my face to my upper jaw and cheek which started to feel like I was punched in the face. Then it slowly moved into my teeth and deep into my jaw bone. This is on my right side only by the way as it usually occurs on one side of the face. It started to hurt so bad I was grunting laying in bed and my teeth started to literally feel like they were going to explode. My cheek bone started to feel more like it was cracked open or hit with a sledge hammer, I’m not exaggerating it’s that bad!

As the night went on the pain went up to a 12 on my pain scale which to me is crying, screaming in pain, pain is so bad you are nearly passing out from the pain, tremors, can’t help yourself and you lose all control of anything else but just feel pain. I don’t think pain could get any worse than this because I would have passed out and not felt it. I sat up in bed crying and contemplating waking my parents so they could take me to the hospital. As you know I’ve had no help or any luck going to the hospital so I avoid it when I can and I have nearly every Med they have here at home. Saline is the only reason I go. The pain was so bad I couldn’t think, I just cliched my sheets rolling around trying not to scream and wake my parents and little niece.

I drank my water and I noticed that water helped cool the nerves and the pain lowered to maybe a 9 after each sip of water I had to hold in my mouth. Then the pain would go back up within 2 minutes of fresh water to a 12 (again the highest I think pain can get before passing out). My upper jaw bone, teeth, tongue, under my tongue, cheek, eye socket, chin, lower jaw were all in so much pain each part felt like I had anything from a hook in my mouth, teeth being drilled with no novocaine, I felt like I had facial surgery without any anesthetic or lidocaine, novocaine …. it was horrible. It’s giving me flashbacks now. It is pure torture and evil.

I tried ice packs and heat packs which only made it worse. I tried cold bottle water which didn’t work but semi cold to room temperature water was the only thing that helped. At this time I had taken my nightly 75mg of morphine, 40mg of Norco, Benadryl and Ibuprofen. The pain meds didn’t even touch the pain (meaning it didn’t lower the pain scale by even one point). That’s when I got scared nothing would help. I felt there was nothing I could do but drink the water. I had to keep water in my mouth every two minutes all night. I would say I had at least 20 empty water bottles near my bed that morning. I had to pee often from drinking all the water but had to take a water with me in the bathroom because if I didn’t the pain got so bad if I missed that 2 minute window to take a drink. It was like clockwork. Without the water I was nearly passing out in pain so I never got any sleep. Next morning I told my parents what was going on.

My mom took me to the ER. I sat there in so much pain. Walking made the pain worse. The ER did the usual “why are you on pain meds” routine instead of actually caring about what was hurting me. The doctor saw me maybe 3 minutes and diagnosed me with Trigeminal Neuralgia and they gave me a shot of Toradol and prescribed Elavil and sent me home. I didn’t feel any better or any relief of the pain and they said “you will be fine have a nice day go see your doctor when you can”. So the fact that morphine & Norco didn’t touch the pain yet they thought this shot would is beyond me. Luckily my neurologist got me in today and my primary prescribed me a better med for Trigeminal Neuralgia (TN). He gave me Oxcarbazepine.

My neurologist said “why didn’t the ER do a CT scan and why did they give you a medicine that doesn’t work well on TN? So he was agreeing that the ER is a joke. He also concurred with my primary that oxcarbazepine was the best medicine for TN and diagnosed me with TN as well. I’m already on Keppra for seizures so now I have two more epilepsy meds now. There are plenty of side effects which I already have anyways so it just makes them worse if anything but so far the med has given me relief after 3 days of the worst pain. Always talk to someone who has the same diagnoses as you and ask what helps them as I find most of the time the doctor doesn’t prescribe the best medicine for the diagnoses and you will be a lab rat trying 5-10 meds before one works. I had a friend tell me what med to ask for as Elavil doesn’t work well. My starting dosage for oxcarbazepine is 150mg twice a day but working up to 300mg twice a day. It makes you dizzy and you have to follow instructions carefully.

After the days of pain my face felt like I was in an accident or fight or that feeling after having teeth pulled and surgery. I have been so anxious for that pain to come back, it’s not something I want to feel ever again but I’m sure I will. It’s scary. This is something I will have for life and it’s far from over but I’m glad the pain has calmed enough for me to write this so I can help someone else wondering what it can be. Pain meds don’t help much so make sure if you have TN get to the doctor right away and try to get a what I’m on or ask for others.

Web MD

Tic douloureux or trigeminal neuralgia is a severe, stabbing pain to one side of the face. It stems from one or more branches of the nerve that supplies sensation to the face, the trigeminal nerve. It is considered one of the most painful conditions to affect people.

The pain usually lasts from a few seconds to a few minutes. It may be so intense that you wince involuntarily, hence the term tic. There is usually no pain or numbness between attacks and no dysfunction of the muscles of the face.

Most people feel the pain in their jaw, cheek, or lip on one side of the face only. Pain is usually triggered by a light touch of the face or mouth on the same side as the pain. The pain is so severe that people can become afraid to talk, eat, or move during periods of attacks.

Although a flurry of attacks can last for weeks or months, there are usually periods of months or even years that are symptom-free. The pain of tic douloureux is usually controlled with medications or surgery.

Tic douloureux is generally a disease of middle age or later life. Women are affected more often than men. People with multiple sclerosis are affected much more frequently than the general population.