Tag Archives: Fibromyalgia

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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UCSF Visit – Pain Management

11 Feb

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UCSF Visit – Pain Management

I took the long, torturing ride to UCSF yesterday. I was car sick in the first 5 minutes. It’s always good to see what the outside world looks like and see the sun though so that was a plus. I took some iPhone pictures I edited below of SF. I also had lunch and tried to enjoy the scenery but I was in too much pain and too sick to take it all in.

So the visit was not really what I expected. The Butrans patches have been burning my skin and I have red, square burn marks all over my arms, chest, back but they decided to keep me on the Butrans patches and up the dose to 20 mcg (all the FDA allows in the US). I asked for the best pain med they had just to have even one good day a month and the doc said “you are pretty much on it and there are no other options or better meds I can put you on that you haven’t already tried in the same pain med class”. He gives me ‘cancer patient/ chemo meds’ he said.

So my new treatment will be Butrans 20 mcg patches daily,  6 Norco per day, and Ketamine Infusions that he says is a special cocktail that he has a recipe for (not sure what else is in it).  He said I will need an anesthesiologist while getting the Ketamine since his cocktail can make me hallucinate, space out…etc.  I know Dr. H office gives Ketamine but not sure if it is this high of a dose or the same cocktail. I can get the Ketamine infusions as often as I need them each week (on top of the Butrans patch and Norco).

I will be also taking Methadone on the months I don’t use the Butrans patches so I don’t build a tolerance so fast. So I will stagger the meds such as Butrans one month then switch to Methadone then back to the patch the next month and so on. For me these meds just take the edge off enough each day but don’t really “stop” the pain. I guess you just kind of get used to the severe pain as weird as that sounds so I can seem like a person not in this much pain if you met me.

The Ketamine he says is to “reset my brain” and hopefully the pain will go away for a day or two while the other meds are still helping. Since I have so many medical issues and old injuries that cause all this pain this isn’t really 100% just a Lyme thing so I hope this doesn’t scare new readers with Lyme. Although the Lyme & Fibro do cause severe widespread pain so don’t get me wrong.

Now I just need to find a better PCP or hopefully my new LLMD office can write the scripts for all my new meds. There is no way I can drive to UCSF every couple days for Ketamine infusions so I have to find a near by place to do them. I know my current (evil) PCP will have a fit with all the new meds and probably refuse to write up the prescriptions (UCSF can only recommend the meds and my doctor has to fill the meds…if my doc refuses then UCSF will talk with them or fill them their self).

Never give up hope!

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UCSF 1UCSF 2UCSF 3

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I’m Angry – Visit To New PCP

25 Nov

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Angry Visit To New PCP

So after my last visit to my other PCP (who actually does believe in my lyme), she was very rude again and pretty much said she doesn’t know how to help me. She gets very cocky and loud with me. She asked during a the previous visit “you need to go see your LLMD asap and tell me your game plan”. So I visited my LLMD then next visit I told my PCP the “game plan”,  so she yells at me and belittles me “why do you go to an LLMD she is taking you for a ride and taking your money she’s not a real doctor”. Umm ok you told me to go see her so I do and you yell at me! She yelled at me about all my antibiotics and meds I take for lyme yet she prescribes me doxy….etc. She was just not pleasant although she believes in Lyme it’s not worth getting yelled at.

My mom made me an appointment with a new PCP which is actually my doctor I saw 4 years ago before I lost my insurance waiting for Medicare. The last thing he told me back then was “there is no Lyme in California” so I was hesitant to go see him again. He was also the one who found my hypothyroid, c-spine issues and arthritis so he did have some good points.

At the visit today he walks in and says “so what has been going on with you, a lot I see”. My mom hands him my positive Lyme culture and many blood tests then starts to talk (since I am always at a loss for words) and he was defensive, standing up for other doctors, saying he sees no proof of my Lyme or Lupus and that I need more documentation. I have a 4 foot high pile of medical records with proof, what more does he need?

The whole point of the visit was not that he helps me with Lyme but with all my other non-lyme issues like the flu…etc. I wanted a standing order for a home nurse to give me IV fusions for my dehydration. I told him I have chronic dehydration or ongoing and he said there is no such thing. I then said well everyday I am dehydrated no matter how much fluids I drink my blood work shows I am dehydrated and my last few ER visits they said I was dehydrated. He tells me how IV’s  are “VERY DANGEROUS” and he would never recommend IV fluids and he thinks I just don’t drink enough water. I drink more than anyone I know and mostly water/kombucha/gatorade.

He shot down the IV therapy, told me he doesn’t think I have Lyme although in the same medical building he works in my other doctors who are more experienced than him (neuro, neuro surgeon, rheum) and 4 LLMDs (not in his building) all say I do have 30 year chronic Lyme and co’s. He said they need to give him more documentation before he believes anything or will help. He read where my neuro surgeon said Lyme has ruined my spine and caused me not to be able walk for 2 weeks so he sees no need for spinal surgery since Lyme is the issue. His response was “well he never said you 100% have lyme”. What?!!

Then the jerk says “oh by the way I see you use marijuana for vomiting and nausea, well I do not treat any patients who use marijuana that’s like using crack or cocaine it’s illegal and you can make me lose my license”. He didn’t care I have my mmj card, I’m legit or that almost every doctor I have seen has highly recommended marijuana. He threatened to stop my pain meds if I continue to use marijuana although he knows it helps.

Basically he said “I will not be your doctor or help you and you need to find another doctor but make sure you have more proof before you see them because they won’t believe you either”. So he wished me good luck as I gave a fake “thank you”. So I left the office and dropped a lot of F-bombs on the way out.

So now back to the hunt of a new PCP again. I have seen so many I lost count but not one has shown any care or compassion. They turn their heads to my Lyme, coinfections, CFS, Lupus, Fibro and they always think I have something I’ve already tested negative for. So although I have solid proof of all these illnesses because they don’t diagnose me with it they don’t believe I have it or they just support the IDSA. It’s such a struggle for all of us Lymies to try to find just one doctor willing to help or care about us. I have already moved on I don’t care about idiots I know my own body better than they do and karma will take care of them.

But I won’t give up and neither should any of you. Hope you all have a Happy Thanksgiving and find a reason to be thankful.

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UCSF Appointment Results

16 Jul

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UCSF Appointment Results

I actually felt pretty good about how the appointment went. Although I was supposed to see 3 doctors at the one appointment there were only 2. Each doctor asked questions about my pain and illnesses and wanted to know what hurt the most. Then the main doctor recommended a pain patch called Butrans which he prescribed (through my primary). He says it will work better than Norco and is less addictive.

The patch will stay on and there is less of the up and down you get from oral pills and more of a constant pain relief so I can likely sleep at night. I asked for Marinol which will help with nausea and pain. The doctor recommended and talked about how medical marijuana is proven to help and how it has little side effects if any.

The doctor wants to put me on a cancer patient med once it becomes available called Nabilone. He says right now it is only available for stage 4 cancer patients with very little time to live and it is relieving their pain and seems to be a great pain reliever. So that may become available in the next year or two.

The doctor was lyme-friendly and said he has seen plenty of patients with chronic lyme disease. He actually said the words chronic lyme disease! He did say he does not know what is the best option for treating my lyme as far as antibiotics, herbals, rife…etc. He just told me to continue antibiotics and hopefully the new patch can give me some pain relief. He said as far as the lupus, fibro, CFS there wasn’t much he could do to help with that. I have a follow-up every 3 months.

There was some good and some bad as always with appointments. Although I did feel this appointment was a success for once. I would recommend visiting them.

The Cons:

  • Pain Clinic is not close to my home not sure why, Sutter has a pain management doctor near by but they sent me to SF
  • Took about 2 hours to get to the medical center
  • Parking $20 (public parking lot for medical center and no handicap spots had to walk 2 blocks), bridge toll ($11) plus a burnt lunch cost $25
  • Left at 8:30 am and got home around 3pm just for the one appoiment
  • They forgot I was there so I was in the waiting room for 1.5 hours and waited for each doctor to see me
  • The doctors said they have no idea how to help any of my illnesses and no idea what will help lyme they could only offer some relief for pain which was expected

The Pros:

  • Both doctors believe in chronic lyme and knew other patients with it
  • I finally got some pain patches Butrans and marinol
  • The doctors were really nice and listened without rolling their eyes or saying my invisible illnesses were not real
  • They were willing to help me and give me anything I wanted to give a try although I have already tried almost all the options
  • They were lyme-friendly!!

– Keep fighting the fight friends.

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Quick Update – Could Not Walk, Wheelchair Soon

23 Mar

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Quick Update – Could Not Walk Wheelchair Soon

The last month has been one of the worst for me. I feel like what little progress I made in 2 years has relapsed. My spine and neuro symptoms are getting worse. I will be seeing a new LLNP/GP next week for more MRI’s on my spine and hip. Still a lot of severe pain all over and down my spine so I will be looking for something stronger than Dilaudid and Norco like maybe Fentanyl patches. I have already tried every pain killer known except for Tapentadol which seems just like what I already take. Tired of crying myself to sleep. Some of the pain is non-lyme old injuries.

Tonight I was trying to get up and walk and my brain and eyes were looking forward yet my body would not move or I would walk backwards. It was very strange to have my body and brain not on the same page. I could take steps but very short and my legs were like noodles. I started to slur my speech and talk very slow (which is not unusual). It just seems more frequent now like maybe my spinal stenosis is choking my spine finally, my neuro is worse from lyme or my old lower back injuries are doing damage.

For months now I use the walls and counter tops to hold me up as I walk. I have hyper POTS so I also faint or black out a lot. I am a “fall risk” and I feel a walker is not enough support so I would like a wheelchair. I have been doing my best to avoid a wheelchair but I think it’s time to get one for those bad days. I was already bedridden 2 years ago and could barely walk before starting treatment.

With so many medical issues (fibro, pots, lyme, lupus, spinal stenosis, c-spine herniated discs…etc) it is hard to say if this is 100% lyme related. I do believe that the lyme caused my herniated discs in my c-spine. I know a lot of my neuro issues like turrets twitches in my head, tremors, unsteady balance…are lyme and TBD related.

It’s scary to know that the rest of my life could be in a wheelchair especially if my stenosis and spine get worse but I am still at peace with all my illnesses and I will push on with a smile and continue to support others. It’s not the end of my life, it’s just a new beginning and new challenges. I want you to fight this disease with me and never let it define you or make you want to give up. Keep up the fight fellow warriors and hold your head up high.

 

– Hope you find a reason to smile each day. Take care for now….

 

 

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Update: No Antibiotics, No Flu Vaccine, CFS, Cognitive Problems And A Cold

15 Jan

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Update: No Antibiotics, No Flu Vaccine, CFS.. And A Cold

 

Primary Doctor Follow Up

I have now been off of antibiotics for over a month (I think lol) and I can’t say if I feel any worse or not. I know antibiotics did help me with a few issues and I am at least 5% better today than I was 2 years ago at my first LLMD appointment. Everyday I feel like complete crap so I can’t sit and tell you if stopping has made anything feel any different. All the symptoms are still there and I still just lay in my chair daily doing nothing at all. I did need a break so my body can heal and detox though.

I finally left the house this month to go to my follow up with my primary doctor and wouldn’t you know it I caught a cold. One of the reasons I never leave the house besides being too ill is also because I seem to catch every bug that is going around within minutes of being exposed to the public now.

During my follow up we discussed my high cholesterol and concluded it is just from genetics and runs in my family. She asked that I lose some weight, I weigh 200 lbs and I am 6 feet tall so it’s not like I am that much overweight.All of my STD, HIV and other stupid tests she ordered since she refuses to believe Lyme is chronic all came bag negative.

What was awkward is she asked me to strip down naked so she can do a physical exam on me. I was freezing and shivering the whole time. She made me lay down as she inspected my male parts for a few minutes then the awkward part happened…she asked me “do you still get erections”. I don’t know if it was bad timing or what.

So as I am naked and she is performing various tests she kept saying to me “you just have a bad case of chronic Fibromyalgia not Lyme”. Then she saw how my chest started turning red and rashy and she said “that’s weird”…. then on my back she saw weird red marks on my skin and said “hmm interesting that is odd”….then she noticed my stretch marks all over my body which are either Bartonella or Lupus and she said “wow those are very red and not normal hmmm”.

So at this point I am thinking she is changing her mind and maybe thinking I do have more than Fibromyalgia but not her final diagnoses was Fibromyalgia with possibilities of something else. She didn’t order any new blood tests and didn’t order a follow up so that tells me she is done looking for what else I could have. She did say the stretch marks and rashes were more Lupus than Fibro.

My primary doctor deal with a lot of very ill patients and most with HIV so I thought maybe she would understand I have more than just Fibromyalgia syndrome (FMS). I showed her all of my symptoms on a detailed list which she just set down and left in the room. On that list it shows how many of my symptoms are not Fibromyalgia related but they are 100% Lyme, Babesia and Bartonella related.

I asked the doctor if she thought I had any kind of immune deficiency and should I be tested for it and she replied “no”.  She told me Mycoplasma and C. Pneumoniae are both nothing to worry about. She didn’t seem too interested in my double MTHFR mutation. On the positive side everything was free since insurance covers all non-lyme related appointments.

So she put me back on Lyrica again. I am currently battling with my insurance to get it covered again. Nothing like battling to get every lyme med covered and Fibro meds too.

 

The Flu Vaccine

I used to get the flu vaccine annually for the past 2-3 years before I became disabled and I rarely would get the flu. Before the flu shots I used to get the flu at least 2-3 times a year. I would get bronchitis, strep throat, the flu, colds and other issues all in the same year and more than a normal healthy person.

Since being disabled with Lyme, Fibro, CFS…etc I was told by my LLMD not to get the flu vaccine. So for the past 3-4 years I have avoided the flu shot. I never leave my house so I am never around the public so I know that helps me a lot. I have visitors sometimes and they can bring the bugs into my house.

This year is supposed to be one of the worst flu seasons so I am keeping my fingers crossed. As you may or may not know with chronic Lyme we feel like we have a bad flu everyday so by getting the flu it will be 10 times worse.

Having a cold already makes me feel worse. The cold isn’t really nothing I cannot handle but it’s more annoying than anything on top of all the Lyme symptoms and pain. Last year I had a cold that lasted at least 2-3 months along with strep throat. It just didn’t seem to want to go away thanks to my immune system.

I see people on social media saying how they have a cold or flu and they say they are “dying”, if they only knew what chronically ill people go through. I want to tell them “imagine what you feel like right now with your flu and add more symptoms and pain and the knowing you will feel like that everyday for possibly the rest of your life”.

 

Cognitive Problems and CFS

My cognitive problems have been even worse. I am very forgetful, cannot find words or names…the usual. I find it very hard to follow my shows like NCIS or to hold a conversation with my parents. I will make notes and set alarms to do things and I still forget to do them.

The cognitive problems have been at their worst for about 4 years now. I will say the severe brain pressure and very loud buzzing/ringing sounds are a little better though. But now it is more like I have the brain of a 90 year old. I never have any idea what day it is or what month and time seems to be flying by. I still thought it was Thanksgiving coming when it was Christmas.

I have forgotten names of most of my support group friends and always forget to contact them. I will just make up word because I get tired of trying to think of the real word. My latest thing is calling everything a “washing machine” when they are far from a real washing machine. No idea why that is the only word that comes to mind.

My CFS has been really bad. For the last 15 plus years I had more insomnia days than CFS days. Last year I was sleeping maybe 30 minutes a day and up awake for 2-3 days before crashing and sleeping finally then repeat. But so far the last few months have been really hard for me to keep my eyes open and my already low energy is at a zero.

I will be watching TV and fall asleep then wake up to rewind the show and then fall asleep again and again even after sleeping for 12-14 hours. I have been skipping taking a daily shower because when I go to take a shower I fall onto my bed and can’t get up and end up falling asleep. I am the type that has to have my daily shower or my skin will get rashes. I will be playing a video game and just dose off during the action in the game.

A normal person may get 8-9 hours of sleep but I used to average 2-4 hours of sleep from age 18 until just before I became disabled at age 33 in 2009. I worked jobs where I had to be up very early and got home late. I could sleep 2 hours and feel fine and never be tired. So sleeping 8 to 14 hours is very rare for me and being exhausted after that much sleep is even more rare. I don’t know if I like being awake for days with insomnia better or dozing off every second and having no energy with CFS better.

I have also been having more out-of-body type experiences and sleep paralysis. The other night I was half-awake and I swear I felt like my body and arms were going right through my bed like I was on a cloud (this was on no pills/drugs). Just some weird stuff going on.

 

New Year

I hope all of you are finding some healing on your journey and are finding some peace, happiness and love. In the past few months I have seen some people go into remission with their Lyme so there is always hope. I know the cold weather makes all of us fellow Lyme, Fibro and CFS sufferers even worse so stay warm and get your rest. Have a much better new year.

 

 

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Merry Christmas – Happy Holidays Support Tree

25 Dec

Happy Holidays support tree

Merry Christmas to all my chronically ill friends, I hope you all have a pain free day. Here’s to a new year of better health, love, and finding happiness.

Hugs &  Happy Holidays –  Bryan (Lyme Inside)