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Quick Update: Disulfiram

7 Nov


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

20 Jun

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.

Life With Chronic Illnesses – What It Does To My My Body

2 Jun

First off I’m sorry I haven’t posted or been active for a long time and might be away for a while again. Physically, mentally & emotionally there is just too much going on & I can’t keep up with this blog. I’m sorry I missed all the comments but I hope all of you are well & continue to fight. My spine has gotten worse since last post & I can still be paralyzed from the neck down at any time. I’ve been through a lot of bad & nothing good to share since my last post. Not trying to be negative but my bad luck continues. My parents are taking good care of me and my heart/BP issues are under control for now after nearly having a stroke & heart attacks 3 years ago.

Below are only some of the things I can think of that have happened to my body from all my illnesses. That includes; Lupus, nearly life Long Lyme disease, spinal issues, genetic issues, primary immune….etc.

Brain pressure, brain swelling
Cognitive issues, trouble finding words
Brain fog, forgetful
Long & Short term memory loss
Migraines, headaches
Hair loss in small patches from thyroid
Eyes hurt, vision get blurry, double vision
Eyes are dry daily
Eye lids burn
Eye spasms
Get seizures from pulsing lights
TV movie angles, unstable camera, blurry video strains my eyes
Teeth are severely sensitive to heat, cold, hard food
Gums hurt, have to eat or drink things at room temp
Chronic sinus inflammation, hard to breathe through nose
Sneeze attacks (unlike a normal sneeze)
Lymph’s in face sting, hurts, dull to sharp pain, electric shocks up chin
Charlie horses in my chin
My whole face burns bad every night
Fevers, sweaty forehead
Ears burn & sting, tinnitus or ringing & buzzing in ears
Mouth literally always dry & dehydrated, cotton mouth
Neck stings, shocks up neck, carotid artery pain
C-Spine I have severe spinal stenosis, close to paralyzed from neck down
Herniated, exploded discs in neck, pinched nerves, severe neck pain
Hard to turn my head, stiff neck, stabbing pain in back of neck
Sore throat, acid reflux, heart burn
Vomiting, nausea, gagging, dry heaves
Sensitive to smells
Pass out, seizures
Off balance, fall over, run into walls

Shoulders to Stomach
Shoulder & shoulder blade pain
Rashes on my back, chest
Chest pain, rib pain
Trouble catching my breath
Wheezing & coughing up stuff from lungs
Glands under armpits hurt
Arms have CRPS/RSD, skin on fire in both arms
Veins hurt in both arms
Carpal tunnel, wrist pain
Bowlers thumb pain
Tendons pain in hands
Charlie horses often in hands
Hands cannot open sometimes & cant move arms
Joint pain, bone pain, muscle pain all over
Lower to upper back have degenerative disc disease
Back has pinched nerves, stenosis in lumbar
Back pain is severe, lose ability to walk sometimes
Back goes out sometimes
Can’t bend over well
Walk with a limp, hard to walk
Heart problems, blood pressure problems
Hypertension, POTS
Loop recorder in my chest muscle
Organs hurt
Stomach pain, vomiting
Rash all over my back
Muscle spasms in both arms & my back
Hands severely sensitive to heat, cold
Involuntary movement in arms, hands, throw things
Tremors in hands
Finger nails hurt
Tightness in chest & tremors in chest

Stomach To Feet
Testicular torsion (once so far but phantom pain)
Thigh spasms
Charlie horses in my feet
Feet extra sensitive to touch, heat or cold
Joint pain, bad knees & hip
Right hip can’t sleep on in bed too much pain
Knees lock up when cold
Muscle, nerve pain down legs
Hyper sensitive in feet
Bottom of feet hurt
Pain from head to toe every single day since I was 5 years old
Bone infection in leg at 6 months old
Hard to walk
Haven’t been able to jog since I was a kid
Legs fall asleep a lot
Tingling in legs
If I walk more than 50 steps my leg begins to burn bad & my knee/hip

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

14 May

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

6 Feb

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!

Thank You! Wormser is OUT!! 

10 Dec

Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 


Update: MRI Results, C-Spine Stenosis Surgery Needed 

17 Oct

MRI Results

Sorry I haven’t been active for a while. I lost a couple relatives since my last post, been sicker, and things have been hectic. We had the California fires breaking out and took in some family as fires broke out near us but we are all safe. My fevers have been higher, I’ve been very tired and things have been worse than my normal worse. Let me just say this MRI was very painful and I was crying and shaking bad. I have seizures where I can’t help but moving or jerking so to try and stay still and laying on that hard surface with my bad back it was pure terror. 
I posted about my spinal issues over the years and older MRI results. My new neurologist wanted me to get an update to see if things were worse. I lost the ability to walk a few years ago but regained the ability to walk. I have herniated, bulging, exploded discs, degenerative disc disease, cysts on my spine and spinal stenosis. Well the results weren’t good. My Primary Doctor saw them first and he cringed and said “ouch” a lot and told me he couldn’t continue to read the results because they were too much and my Neuro would be better at explaining them. 

I saw my neurologist today and he said “interesting”. But he says I need surgery no doubt and as soon as possible or I will be quadriplegic (lose feeling from the neck down). My spinal cord is being crushed in a few spots on my c-spine and lumbar spine but they need to fix the c-spine in C4-5 right away. I’m losing fluid around the cord and it’s being flattened so I’m hyper sensitive in my legs and losing feeling as well. One good fall and I could be paralyzed or dead. My friends dad had stenosis he didn’t know about, fell off a small set of stairs, was paralyzed from the neck down and passed weeks later. My doctor doesn’t want that to happen to me. 

So I will be seeing Neuro surgeon numbers 2 and 3 one here in town and one at UCSF to get many opinions. I have about 4 or 5 neurologists and 3 Neuro surgeons now and some said to wait fir surgery years ago but now with the bad news they may all agree on surgery. My case is difficult because of my primary immunodeficiency, auto immune, MTHFR double mutation, lupus…etc so my risk of death is higher than the normal person and my risk of infection is very high since I’ve been on every antibiotic I may be tolerant to all. So the surgery was delayed all these years due to the high risks but now it looks like I’m having surgery very soon. I’ve dreaded this day for years. 

My poor mom is getting foot surgery in two weeks so this will be hard with just my parents and I and taking care of my niece. Plus having to drive 3-4 hours to UCSF while I puke all down the freeway won’t be fun. I get car sick very easy. I just got to stay strong and push through this like I always do. My Medi-Cal (Medicaid) was denied because of many errors the county made and then put the blame on the patient so I recently paid a surgery bill and can’t imagine how big this surgery bill will be! Wish me luck. I hope you all are doing better or finding good health care. Hang in there.!