Tag Archives: Chronic Lyme Disease

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!

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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. 

CLICK HERE TO READ MORE 

Lyme Video – What’s the Story? Treat Lyme Disease not the symptoms. Act 83

8 Nov

Thought I would share this Lyme video that was shared with me. It may answer some questions and you may relate to the things that are mentioned.

Visit To New Immunologist (Rheum)

28 Oct

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Visit To New Immunologist (Rheum)

So far at UCD I went From a rude doctor, to a decent doctor, to a flamboyant doctor. The doctor last month was a Rheum and he was really nice and believed every thing I had medically wrong but he said I was “too complicated” so he sent me to a semi-retired imune/rheum/allergist doctor today. I was going today just to see if I do have a Primary Immunodeficiency or secondary or why my immune is so low. We went to see if I should continue the IVIG (Gammagard) for the next three years.

First a doctor studying under my immune doc came in and asked me a ton of questions. All about my lupus, immune, auto-immune diseases and more. So every answer was “yes”. He seemed very nice and friendly. Then he went to get my actual doctor. All of the sudden in walks this older man and he had two other doctors follow him in. He never explained why two other doctors where in the small room with me. It was very awkward as if he was a celebrity and he had his two body guards. When he would ask a question or not understand what me or my mom were saying he would look at his other doctors as if we were idiots.

He kept starring at the ground and wouldn’t look me in the eye. He would just say something like “I don’t know why you are here who sent you”. Just being rude, abrupt and bold. He said “if I was your doctor you would not be on IVIG until I knew much more”. He also looked at my lyme test and said “I don’t know what this means it’s not FDA approved”. Ummm okay but it is also 98% accurate and they grew lyme in my blood within 10 days so look at that part. These doctors always act like we are stupid and don’t know medical terms yet I know everything they talk about. So he was basically saying he doesn’t know what I have since my testing isn’t complete in his eyes. But when 3-4 doctors with MRI’s or positive testing tell you that you for sure have something, then one doctor says he doesn’t believe them, it’s like they are saying they are smarter than the other doctors.

So then the old “I need to know more and I think you need to go to a psychologist it may be depression” came up. Fed up I said “NO! , I am not going to another damn psychologist and going through this crap again”. I said “I am somewhat sad because I am sick, I am not sick because I am depressed, I have already passed the psychologists visits and they said I was fine (plus I have a background in Psychology)”. Besides I was there for my immune so he thinks I am stupid enough to think my immune is so low because I am depressed? He just wants to rule out what 20 other doctors said I had wrong and say it is depression, just like all doctors do when they don’t know what is wrong or how to treat you. Well sorry medical system I am not taking “depression” as an answer or even to be brought up anymore I know your stupid protocol. An old “friend” who is a nurse (not sure how) said that she and doctors in her hospital use the terms “Fibro and Lyme” as a nice way of saying we are “lazy and depressed or have mental issues”. She is no longer a friend as you can see why.

So the immune doc started testing my muscle strength. He was pushing real hard and my knees hurt bad and he kept yelling “push, push, push”!! Then he sent me for a blood test and he says he is seeing if a vaccine from years ago comes out high then I am fine and don’t need IVIG or if it comes out low I need another blood test to challenge a new vaccine. But vaccines aren’t the best thing with lyme. I hope I don’t have a primary immunodeficiency but at the same time I do so he won’t say “see told you that you are not sick” or because it would explain why I have always been sick even as a baby. If I don’t have PID then I will need to find out why my immune is so low but the doctor didn’t seem concerned my numbers were dropping like crazy.

So he walks out of the room and my mom said “do we wait here” and nobody responded. It was just like we were bothering him and his time. Like he was so big bad movie star and he just walked out. Umm thank you grumpy! Obviously I am very sick even if I don’t have the immunodeficiency so show some compassion.

My Lyme doctor still wants me on IVIG and wants my immune to be higher or boosted. So I may be starting three years of an IVIG study program this month. I will wait to see what my immune test results say but either way I need immune help and this immune doc said if my test is fine then don’t come back.

Hop you all are having better luck and better days. Keep on pushing.

Appointment With My New PCP Today

23 Sep

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Appointment With My New UCD Primary Doc

So I will try not to get too angry in this post but here it goes…

I currently don’t have a primary doctor (PCP) or specialist (except for a neuro, neuro surgeon and lyme docs) since my last doctor said he didn’t want to be my doctor and I should keep looking. Every doctor my mom and I see is rude, not people friendly (unless you have something they can see wrong with you) and pisses us off! They never believe any diagnoses that my other doctors write in my records and most diagnoses were from PCP’s, rheums, specialists, not just lyme doctors. Every doctor believes lyme doctors are quacks and that there is no lyme in Cali. So this is like doctor number 30+ in the past 20+ years of searching for a “good doctor” that I trust, like or that will actually help or listen.

We tried all the docs in my city and near by cities so my mom took us to UC Davis in Davis, Ca. Although I get very car sick we figured a short drive is better than having no doctor, especially with the new pain meds/norco law that you need to see a doctor face to face every month and there are no longer refills. So I need to see a doctor every month just to get my morphine and norco since all these stupid druggies give us severe pain patients a bad name. Plus driving to see my lyme doctor every month would be too much on me since she is further away. I get too car sick so I usually only leave the house to go to doctor appointments or to pick up meds, if I can do it that day.

So we get to UCD medical office and the receptionist was really nice so we thought maybe the doctor would be also.The doc walks in and sits down to read everything my dear mom had organized for us. He just said “hmmm” a lot. Basically he says he “wants me off pain pills because only cancer patients should be on pain meds”. You heard that right. I know people with and who have survived cancer and they say their lupus and lyme pain are far more superior than their cancer pain ever was. I know cancer is horrible but for him to say that is the only diagnoses that needs pain meds was outrageous. He didn’t like the fact I take muscle relaxers for twitches, cramps, spinal stenosis and most importantly …sleep! He said “I am a traditional doctor I don’t believe in pain meds or giving pills to help, that’s what physical therapy and psychologist are for”.

He starts asking m the usual “you must be either depressed or a drinker, smoker” questions. So I told him I tried tobacco chew one time in my teens & it made me turn green & I puked all night so I never touched it again. He has the nerve to write down “former smoker”!! So now all the doctors in the future will think I was a smoker & “unhealthy” then blame that on everything wrong with me. I never smoked! He asked if I was in a war or if anyone in my family abuses pain meds. Of course I told him the truth “NO” to every question. He asked when is the last time I saw a psychologist ad if I would be willing to see one. I said a few years ago I saw a psychologist from Medicare approval and she said I was fine. The I said “no I will not see one” because yes I am depressed I am sick and lost everything but no I am not super depressed and that is not what is causing all of this I go through each day.

My mom gave him all my positive diagnoses blood tests & records from Sutter, UCSF, & with other well known medical groups. He reads them all & says he’s “skeptical & just thinks I’m depressed”. He had to mention the usual idiotic statement “lyme is cured after 10 days of antibiotics so if you did them for 3 years you were already cured and the symptoms are lingering, you no longer have lyme”. I wanted to scream, so I told a joke instead, he didn’t crack a smile. I said so depressed people tell jokes and laugh like I do? My mom says how I am always upbeat and try to motivate and inspire others. I said “I wish I could see Dr House ha ha ha” the doctor replies “well house is a fictional character and I’m a real doctor”. Not even a smirk from him as if I wasn’t funny at all. Although that was my smart ass way of saying “it’s funny how a TV doc & myself know more than you, jerk”!

He said the usual response I get every time I need a PCP, “well I can’t really help you but I will ask around to see if I can find another doctor to help you but I can tell you none of them believe in Lyme here”. So my mom started to cry & begged him to help us. I don’t like to see my om crying so I wanted to punch him or say “let me get a lyme carrying tick and let it bite you and your family then you can take those 10 days of antibiotic 20+ years after you were infected and then tell me you are cured and show me proof”. My mom begged him that we just need a doctor in case I get the flu or sick from something else & we don’t want any prescriptions or Lyme care from him. He said “so when is the last time you had the flu anyway”? What does that matter? I said “a coupe of years but only because I am confined to our house so I rarely have human interaction but I used to get it a few times a year, every year”.

So the doctor saw my mom was desperate for help and he changed his mind a little, he said “oh I didn’t say I can’t help at all, I will get blood work done today and I will send you to a rheumatologist for your primary immune deficiency & also to our pain clinic. My mom read that their pain clinic may do Ketamine infusions which are hard to find and very hush hush and they may be covered instead of paying $900-$1200 each infusion currently. The doctor said “our pain clinic will want you off pain meds & they do physical therapy for pain so I don’t think you will get ketamine or pain meds”. Yeah physical therapy (exercise) really helps with that, been there done that!

It was just like usual he was closed-minded & didn’t want to be my doctor from the start. This is what I deal with every time & have to hold back from using profanity. He even literally said “you may find another doctor in this medical building that is more “open-minded” but not many. So he told us he was “skeptical and close-minded”. I can’t believe we live in a world where if we have an invisible illness we are treated like crap by strangers, doctors and even family members who think we are just lazy and getting needles and infusions for fun. The faces I get from people when I am wearing pajamas since my skin is too sensitive to heavy clothes sometimes or when I get out of the car in a handicap space (with my plaque). It’s enough to break a person down but I won’t let it get me down, when I am backed in a corner I fight!

The doctor left the room and didn’t shake my hand or get close he just kind of wanted out of there. We left feeling like nothing was really accomplished except we may get lucky and get ketamine infusions cheaper or we may get kicked out of there too. I felt as though he saw me as a depressed guy with CFS and I am a druggie. He didn’t care I have a weak immune my whole life, bone infections, almost died from elderly pneumonia in my teens….etc. One day I will find a good doctor again that isn’t a lyme doc and things may get better, until then we have to keep on going and keep up the fight because life goes on with or without us. Hope you all are having better days, stay strong.

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My First Ketamine & Versed Infusion

8 Sep

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My First Ketamine & Versed Infusion

Update: first a quick update on how I am doing. I have been getting sicker the last couple of months. I am so exhausted and haven’t had the energy to post or reply. I have been crying in pain everyday as usual. Can barely walk most days but still I am thankful I can walk again. I am told they think I have intra-cellular dehydration. Just having a rough time like I know many of you are too. We will get through this.

Infusion

After my last visit to UCSF my pain management doctor said I have already tried pretty much every pain killer on the market so as a last resort for those with severe chronic pain he recommended Ketamine infusions. My long-acting pain killer, morphine (150mg per day) barely takes the edge off and for me my Norco is the only break-through pain killer that has helped with taking the edge off also. But they barely drop my pain from a 10+ down to a 8-9 for a couple hours if that.

I have a high tolerance for pain so my 10+ is probably a 20 on most sufferers pain scale. I’m the type who cuts my head open bleeding all over and doesn’t even feel it that much. But after having RSD/CRPS , herniated discs that felt like hot lava in my neck and a bad kidney stone attack and passing it then I knew what bad pain was. I know people who cut their finger and think they are dying a say it’s a 10 on the pain scale so I know everyone’s scale is different.

For my infusion they wanted to start me on a low dose to see if I can tolerate the med and didn’t have a bad reaction so next dose is 175mg then up to 200-500mg as we progress and the knock out dose. I had zero hours of sleep the night before the infusion. I went into my own private infusion room and laid down for my IV. The nurse had to give me 3 pushes (3-4mg) of Versed hoping that would calm me and put me to sleep along with the 50mg of Ketmine but it didn’t and I kept squirming around. I have twitches with my neuro lyme so I can’t sit still too long especially during MRI’s or CT scans. It gave me the nitrous oxide feeling like when you used to get the gas at the dentist during a tooth pull. Ketmine and versed are basically meds used to sedate you during surgery. The room look “fuzzy” but that was about all I felt.

After the infusion was done I stood right up and we went back to our hotel room. Now I am not sure if it was due to a lack of sleep and being heavily sedated and having versed but I did feel less pain like maybe a 6 on the pain scale for about 2 hours. The pain slowly came back and hit me hard the next day. Today I was avoiding going to the ER the best I could. It gets scary when you feel so horrible and afraid something may go wrong but you are afraid to go to the ER because they treat me like crap. I will get my next infusion soon. But I am back to a 10 plus but it was so great to not feel as much pan for those 2 hours. Ketamine is not for everyone you usually need to have RSD/CRPS or chronic severe pain for many years to be considered for it. The Ketamine IV cost me $700 out-of-pocket.

Gammgard IVIG

I am taking a one month break from my IVIG infusions for my PIDD. My immune subclass numbers only went up a few points in 7-8 months but that means they are slowly doing something. So I will most likely be on them for 3 more years for now. Each infusion is $500 out-of-pocket but I am hoping to get them covered 100% soon. So that is a good to see they are doing something even if it is baby steps.

 

– Stay strong my friends and never give up.

 

 

 

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What My Days/Nights Look Like

8 Aug

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What My Days/Nights Look Like

Here is my brief but true day in the life of Bryan (Lyme Inside).

  1. Wake up around 5-6pm
  2. Take my “wake up meds”
  3. Go to the living room and sit in my recliner
  4. Eat dinner
  5. Take “after dinner meds”
  6. Watch TV and get on social media or text back friends
  7. Take “nightly meds”
  8. Go back to bed and watch more TV, take more meds then hopefully fall asleep (sometimes I sleep 30 min to 2 hours)
  9. That’s pretty much it. I rarely leave the house maybe once a month for doctor appts and to get meds.

 

For my newer followers; I have been disabled since 2009 and haven’t driven a car in 5 years. Lost my good job due to being bedridden and went bankrupt 5 years ago. I have been in a wheelchair but currently and thankfully I can still walk. I get sicker in the sun so I stay indoors and don’t go in the backyard much to see nature. I have very little human interaction in person mostly from the fact I will get ill from someone since my immune is so low and I feel sicker when there is too much noise and stuff going on. I have been treating my chronic late-stage lyme for 3 years and tried almost everything except stem cell or highly-expensive treatments. I was misdiagnosed for 28 years and my Lyme and co’s are 31 years old as of May. I have not progressed much and still have hundreds of symptoms. I have seen numerous well-known lyme literate doctors including LLMD, holistic, nature-path, specialists and PCP’s. I have many other illnesses and my spine is a mess due to lyme. But over the years I have learned not to take anything for granted and enjoy the little things in life. I use my illnesses to try to educate others and inspire others going through their own battles. Life is short so try your best to smile even through all the madness and pain. One day the truth about lyme will open the worlds eyes and maybe we can get some better treatment and be treated better at doctor offices.

 

 

 

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