Tag Archives: CFS

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!

CFS/ME Is Finally Real & Renamed “SEID” & Yes Men Suffer Also 

7 Mar



I guess doctors finally believe in one invisible illness and studies have backed it and proven its real. Chronic Fatigue Syndrome (CFS or ME) is now being renamed “Systemic Exertion Intolerance Disease” (SEID). Doctors are said to finally be taking this seriously. That’s good news. 

I was watching Dr. Oz where they kept saying “women finally can feel relieved” or that only women have CFS/ME/SEID but that’s not true, men have it also and I am one of them. Kind of made me mad. They also did the same thing with Lupus saying only women have it yet men suffer from it also and I also have Lupus (SLE). Just because a majority of women have it doesn’t mean it’s only a female disease. So don’t believe everything you hear on TV or on the Internet. 

Just like Lyme disease is said to be an “easy cure” or it totally leaves your body after 10-14 days of antibiotics…..that’s total bull crap! They also say Lyme disease is not chronic, isn’t in other states or countries…blah blah all lies! The CDC and IDSA need to put the truth out there. Someone new to Lyme reads these things and gets false hopes of they may be told they don’t have Lyme only many years later to have Lyme get worse in their body and they are in a wheelchair, having seizures and cursing at the doctor years ago who told them they didn’t have Lyme. 

So I just wanted to add the fact that yes men have CFS/ME/SEID also. I have all if the symptoms and have been diagnosed with it from many primary doctors. They belived in it back when they diagnosed me but they always says there was nothing they could do to help. I tried daily self B12 injections (my B12 turned out to be high), I’ve tried everything but nothing can help the pure exhaustion, zero energy & lead weight feeling in your body. 

The only pro to having SEID is that it usually wins over my insomnia and I can sleep a lot better and longer. It’s a battle so my body is constantly confused. The insomnia wants to keep me awake while the SEID wants me to go to sleep, even while standing up sometimes. Just like my auto-immune disease and other diseases they are confusing my body and doing different things. This can be very exhausting to your body to have your immune constantly at war and your body at war with itself then adding Meds that are trying to help but add to it. 

I wanted to validate to my fellow male followers that yes your CFS is real and yes men have it too so don’t feel left out. Lol This is one step in the right direction for us sufferers and maybe some meds will be on the way that can help. It helps us feel validated. Now we need to get the other invisible illnesses studied and doctors to believe us/them. 

Have a better weekend warriors! Keep your head up, things will get better. 









Update: CFS & Pain

31 Dec

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CFS & PAIN

Happy Holidays everyone! Hope you had a great Christmas & had time with loved ones. Let’s hope this new year is better for everyone!

Update

Christmas Eve night I laid in bed crying in more horrible pain than usual all night/morning & I never got to sleep for even 5 minutes. Back when I was a healthy working man I could stay up for 2-3 days with no rest or averaged 1-4 hours of sleep & could still function at work. Now with being so ill, I need all the sleep I can get or I feel much sicker. I had to be up at 3PM on Christmas Day for my sister’s family coming over to open presents & have dinner. So I was up for 24 hours and my pain & CFS were off the charts.

I made the best of it & had to take mmj & pain meds so I could sort of function & be the “fun uncle” for the kids. I enjoyed every second while I could. After dinner I couldn’t keep my eyes open, my CFS was bad so I fell asleep in my chair. My family was laughing at me for sleeping but they don’t understand what CFS is like. I could hear them but couldn’t open my eyes for anything or even move for about 4 hours until I got up to go to bed. I missed most of our family party but I’m so thankful to have that much, some of my friends were isolated or in the hospital that day.

I’ve been having more pain than usual (as if that’s possible) I thought was RSD that’s now moved to my whole spine but since the intensity comes and goes I don’t think it’s RSD. Could just be my DDD, cysts & herniated discs causing nerve damage. This pain starts at the base of my skull (c-spine) and runs down each side of my thoracic & lumbar spine. The pain is not my usual chronic pains but has more burning & nagging like a thrown-out back. Most people would be yelling out in pain but I’ve had a high tolerance to pain my whole life so I can just bite my lip and lay there crying quietly. It’s the kind of pain no meds can take the edge off.

Since I’ve exhausted all pain management options to go with my pain meds all I have left is ketamine infusions to get soon. I’m not allowed to get any surgery so I can’t have a pain patch implanted in my spine where you press a button to relief the pain by pulses in the back (sort of like a tens unit with remote control under the skin on your spine). I’ve been fighting with UCDavis trying to get into their infusion center but they keep denying my referrals. They said it’s because once they deny you the first time then you have to wait a year to get in, yet they denied me the first time by mistake! So it makes no sense. I have to wait 8-10 more months I guess. I had one ketamine infusion but it was low dose & not a coma dose just to see if I was allergic to it but it seemed to help. I’m still taking morphine, norco & medical marijuana for pain but it doesn’t do much especially for the spine pain.

CFS to me feels like there is sludge or poison in my veins throughout my whole body & everything in my body is taking a nap. My brain is even napping. I can barely move, think, & just lay in my chair. My brain will say “grab your water you are thirsty” but my arms will feel so heavy like lead weights, I can’t seem to want to grab my water. So I watch a lot of TV to pass the time. I would explain CFS/ME like when you are in a sleep coma or at the dentist under gas, you are conscious but you can’t really move or react. I haven’t driven in 5-6 years & CFS is one of the reasons. Many years ago I would fall asleep at the wheel driving on the freeway or even while standing up at work so it was dangerous.

Norco

This may be just my body & my case but if I had to recommend any medication that has done wonders for me it’s Norco. I take 40-60mg when I take my daily dose & another 10-20mg as needed throughout the night. I don’t have the addiction gene in my body so I’ve never been addicted to anything but if you are easily addicted to things (alcohol, cigarettes, meds..) then I would try another non-narcotic option such as tramadol (which did nothing for me except confuse my brain). For me Norco gives me slight energy, takes the “edge” off the normal pains, has been a life saver with my IBS-D, & helps with other issues. All of my other meds, I couldn’t even tell you if they are working or doing anything.

Happy 2015

A new year is coming & I would like for you all to have a much better 2015 that is healthier, happier & full of love. We can do this. I may sound like I’m complaining above but I’m just sharing the truth of my story to help others understand or relate to illness or being bed bound. I’m at peace with my life & illnesses, I think that’s an important stage that everyone should try to get to. If you watch “It’s A Wonderful Life” it really puts your life in perspective & you realize no matter how bad your life is, there are many things to be thankful for & life could always be worse. Focus on the good things you do have, not the bad or negative things & that will help you get by. Stay strong friends.

Blood Test Test Results, Small Road Trip & CFS

20 Nov

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Blood Test Test Results, Small Road Trip & CFS

I am too exhausted to post anything lately and I am sorry I cannot keep up with any lyme news. But I wanted to post a quick update of what has been going on lately…..

Blood Results

So last appointment with that grumpy old immune doc didn’t go so well but he told me they were doing a challenge test to see if my vaccines as a kid/teen ever responded and if they didn’t respond that can mean I do have a primary immunodeficiency. The doctor said “if your test results come back high then we will not call you for a follow up and DO NOT COME BACK TO ME but if they are low then we will call you for a follow-up and do more tests”. Which is pretty rude to say “don’t come back to me” instead of saying “I will still try to figure out what is wrong with you”.

My test results all came back very low. They tested me for pneumonia vaccine, diphtheria, and others. They all showed that none of these vaccines responded and thy did not work. I think the range was 3 means you were healthy and the vaccine worked,1.5 means you responded and have a good immune, 1.0 means you are weak and it most likely didn’t respond, and lower than .5 means you have no immune and the vaccines didn’t work (or something like that). My tests showed .25 which is 1/4 so that shows me that I have no immune and the vaccines didn’t work.

So I am waiting on a follow up call and never received one. So I called today and made myself an appointment so the doctor can explain the tests to me. Plus I am going back on IVIG on my own before I see the doctor because I can’t wait on them forever. What worries me is when I had elderly pneumonia at age 21 it nearly killed me and the doctors all said if I get pneumonia bad again I will not survive mos likely. Then now I find out my pneumonia vaccines all failed.

Road Trip

I was able to leave the house for one last week. I am an artist at Gallery 85 (Vernon Davis NFL Owns the gallery). I do art to distract me from the pain. Vernon was kind enough to see I had some talent and let me sale my paintings in his gallery so half goes towards my infusions/medical bills and the other half goes to Vernon’s foundation (charity). I received an email asking me to send 9 or more new prints asap. Shipping them costs a lot and takes too long so my dad said he would take me to the Gallery and on the way we would visit the 49ers new stadium.

The Gallery is 2 hours from my house so I wanted to go but I knew it was going to take a lot out of me. I can’t even get in the car to go down the street I get too car sick. So of course the only day we plan to go we get our first big rain storm and there were accidents all the way there and back home so there was a lot of traffic. We arrived nearly late for our stadium tour and museum walk. I tried to make the best of every moment and bond with my dad over our favorite football team. I had a blast at the stadium but I don’t think I will ever get to go back or go to a game, I will explain why soon. We were pressed for time so I had to rush through the museum and couldn’t read anything or see much. There was an amazing 18 min video to watch when you first walk in but I didn’t have time to see it. So it was fun but we had no time to enjoy it.

We rushed to the gallery which was 15 minutes away before the employee left. Luckily we made it just in time as he was packing up to leave. The employee turned out to be Vernon Davis business partner and ex football player. He knows Victor Cruz (NY Giants) so it was nice to meet him. But I was very sick and pale from what my dad told me. I saw some of my art in the Gallery but I don’t remember too much. I can only remember bits and pieces from that day or I would have ore to tell. So we headed home and 5 minutes onto the freeway and I start puking out the window. My head was hurting so bad and where my c-spine enters my skull I felt like someone was pulling on it as hard as they could like it was being ripped out of my head. My poor dad had to keep pulling over in bad traffic so I could vomit.

I do remember puking and seeing a lady next to me with her eyes wide open and she was swerving and yelling at me. hat made me laugh although I was crying in pain. Before I started puking and getting sick I took all of my usual meds and even extra anti-nausea meds. Nothing seemed to help. My usual recoup ratio is 1:3 (1 day of leaving my house equals 3 days of bed rest and recouping) but this is day 8 and I am still very exhausted, more pain than usual and extra symptoms. So after the 3 hours it took to get home in traffic my dad and I both said “we are never going there again”, although we had a great time otherwise. I cannot do the car rides.

Chronic Fatigue Syndrome (CFS)

I have no idea how I am still writing but I am. My CFS has been so bad lately that I can barley pick up my phone to look at it. I haven’t had much time to do my art work and tat is my extra income on disability. I am so exhausted I can’t even talk some nights or follow a TV show. My whole body feels like I am in a sleep coma and can’t get out of it. My limbs are so heavy, the usual CFS stuff but for tose who don’t know abut CFS it makes you very tired. So that is why I have been quiet lately, well that and my best friend (bond sister) is doing very bad and hanging on. Plus my ex girlfriend pushed me away again a few months back and she is struggling but she won’t let me help or be a part of her life. She told me she loves me and cares about me so much that she doesn’t want to be apart but then she pushes me away for no reason. I miss my sis and my ex a lot and they are they ones who make me smile and make my day besides my little buddy Dom. I will try to keep up with the blog more soon.

Don’t ever give up. The road may be a long one but we all have each other and we have the will power to get through this. Stay strong my friends and keep on being chronically awesome!

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IVIG/Gammagard – Low Immune System

13 Mar

IVIG 1

 

IVIG/Gammagard – Immune

Finally received my IVIG (Gammagard) supplies for my monthly home infusions. Just waiting on the nurse to call and set up the date she is coming to my house. I was supposed to do it last week the nurse was ready but the meds weren’t here yet. This will be my first time using any IV meds for my immune. My IgG has always been low for 5 years or more but my IgA was never low enough that insurance would cover IVIG so now it is low enough to get it somewhat covered. I will be paying $471.00 out-of-pocket for each infusion and that is after being covered by Medicare.

My IgG and IgA are low so we are hoping this will boost my immune and get those numbers up. I will start slow only doing one IVIG infusion every 4 weeks but that may increase in the future. Gammagard can cause headaches if you infuse too fast so the infusion for me will take about 4 hours but some can take up to 8 hours or longer. You are told to take Tylenol before hand. I will have an IV pump so they can keep the drip rate slow or low at the precise pace where I don’t feel the headache. There are many side effects with IVIG (fever, chills, muscle pain..) but many of them are already symptoms us lymies have daily so I won’t notice the difference.

Hope this helps me feel a little relief soon, I know it will take months before I notice anything.

 

IVIG 2

 

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Questions & Answers

7 Mar

QuestionsAndAnswers

Questions & Answers

I thought it might be helpful for some readers if we do a questions and answers type of thing where you the reader can ask lyme related questions in the comments section below and other readers or myself will try to answer them for you. Then I will do another blog post with those questions and any replies/answers to those questions soon. There is no “too much info” (TMI) here, we are all ill so we can relate to any embarrassing questions.

 

I start off the questions with one of my own that I need help with.

My Questions: How can I get a low-premium secondary insurance to help cover medical costs with my Medicare?

I have Original Medicare and a Part D plan but they only cover 80% of costs. I have a secondary insurance from before I had Medicare which is called Medi-Cal here in Ca (Medicaid) but since I have Medicare now Medi-Cal wants an $800 deductible per month before they will help cover any costs in each month. My IVIG (gammaguard) will cost me $471 out-of-pocket (covered by Medicare) per IV and I may need them a few times per week.Even my nurse said most of her patients on IVIG don’t pay a thing or pay much because they have secondary insurance.

My last visit to my LLNP was $900 and Medicare said they won’t reimburse any lyme doc visits for the last 3 years and future appts. My other must have meds/supps are $300 per month plus all my other needs so I will go in debt again at this rate. I know many can relate and some pay more out-of-pocket than I do. I just have already paid a ton out-of-pocket before I had Medicare so I have been there. I am looking for a way to get a low premium secondary insurance to cover the other 20% Medicare does not. Most secondary will not accept me since I have a small fixed income from disability or because I have Medicare. Thank you.

 

 

Please feel free to ask a question below or provide an answer if you can help. Thank you.

 

 

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Sleep – CFS & Lyme Flare

19 Nov

SLEEPING PILLS

Sleep – CFS & Lyme Flare

Too tired to write a lot here but just a quick update. I have been actually sleeping more than 30 min – 2 hours and my insomnia is losing for once. My CFS flare has me sleeping 15 hours a day sometimes and I have been sleeping on and off for 4 days. It feels so good to actually sleep and dream instead of staring at the ceiling thinking of stuff all night.

Keep up the fight and never give up. For those who have nobody around here’s a big HUG for your struggles.

 

 

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