Archive | November, 2013

PCP Visit Part 2 – Help For Reader

26 Nov

jerk

PCP Visit Part 2

After the overwhelming responses to my PCP visit post I decided to add a little more to this post. I had so many lymies share the same situation as mine yesterday which is why I shared this part of lyme life. I want to get the word out publicly without actually slandering the doctor but mentioning what we lymies have to go through just to get regular care by a doctor. It’s a struggle and very frustrating to not be believed, be called a druggie and have doctors turn their backs on us because they kiss the IDSA’s ass.

To clear some things up from yesterdays post: The medical building I spoke of is Sutter Medical. I have been to Kaiser, Sutter, Free Clinics, Private Practice doctors and all with the same results….no help/ no belief in lyme in Ca. I do have 2 different LLMDs in different cities and a few specialists that do take care of me and believe in my lyme. My neuro, neuro surgeon and evil witch PCP believe in my lyme so I there are decent doctors out there just maybe 1 in every 20 (lol).It’s just my LLMDs and specialists can’t help with all my other illnesses and non-lyme stuff so I still need a caring PCP. Every ER visit they say “who is your PCP and why don’t they mention lyme”. Luckily my evil PCP wrote lyme in my records so the ER is much nicer now.

So I don’t get why this new PCP who refused to take me as a patient would not believe what his own colleagues in his medical building would say about my lyme. He refused to listen and I told him they grew actual spiros in my blood so this is not a false positive and this is not your POS western blot test. Then I explained to him how the western blot works and is inaccurate as he was telling me he only believes test he runs. He also did not believe what the ER doctor told me about my dehydration and flare up. I trust the ER doc more than this idiot.

I was tempted to call today and file a complaint and tell the medical office I am not paying for yesterdays visit. But then I thought this doctor can black list me, stop my meds and ruin all my years of hard work to get meds and doctors.

 

Help For Reader

Followers of this blog: Please take time to look at my comments HERE at poor Theresa Lee’s comment to me, it hurts to see someone ready to take their own life because nobody is willing to help. I hear you Theresa and I hope you will talk with some fellow lymies so you won’t have to feel this way. I would love to help but after dealing with many suicides this past year (close family member, my girlfriend, many friends) I have to take a break for myself. Sorry to put your name on here like this but I am trying to let you know I see you and feel you and you are not alone. Hugs to you Theresa stay strong, don’t give up hope and please never give up.

 

 

 

 

 

 

 

 

 

 

 

 

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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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For My Blog Followers

22 Nov

im-sorry

I appreciate all of the comments and feedback from you all. I don’t get on the computer much, usually I post my blog and fix my fantasy football line-up then get off the computer. I don’t use facebook anymore. So I apologize for if I do not reply to your comments or email you back I just don’t have the energy lately and I forget. Don’t want anyone to think I don’t read the comments and ignore them.

Hope today is a better day. No matter how hard life gets you have to keep on pushing. You get knocked down 7 times and get back up 8. Prove to your illnesses that they can’t stop you from smiling and fighting.

 

 

 

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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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Visit To The ER (Hospital)

13 Nov

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Visit To The ER

Monday evening I was feeling very weird and knew something was different. Earlier during the weekend I had passed out for 4 hours and was unconscious and sweating bad. I kept having more fever, chills and neuro issues than usual Monday so I asked my mom to take me to the ER.

We got to the ER and they were actually nice this time and helpful. This time I had “30 year chronic lyme” written in my medical documents from my PCP. They immediately gave me a lot of blood work, took an x-ray of my chest, EKG, CT scan of my brain and IV fluids with meds. I was given (2) 1000 ml IV saline bags and Tylenol since I had already taken 5 Norco and have my Butrans 15 mcg pain patch on. I had a fever of 100 but I always run a low temp of 96 so I never usually go up to 100 unless I have the flu…etc.

I laid in the bed in and out of sleep, I could not keep my eyes open even when the doctors and nurses were talking to me. I felt as though I was in a bad dream and nothing was real. I didn’t even feel the needle they stuck in my arm. I was having nausea too so they gave me something for it but I didn’t see what it was this time.

Tuesday morning around 3:30 am the doctor (who was really nice) came in and said all my blood work was fine and my heart and brain look okay. His diagnoses was a lyme/chronic fatigue flare up with severe dehydration. I have chronic dehydration so I am dehydrated daily but I had been drinking plenty of water before hand, I guess my electrolytes were too low. With POTS I guess I better eat more salt and drink more Gatorade.

I was given the opportunity to be admitted but the doctor said he didn’t really know what else he could do to help with CFS and lyme so I went home. The good part was they told me I can come back now anytime I need fluids or feel bad. Last time I went they told me not to come back and just to see my regular PCP because they didn’t believe I had lyme since it wasn’t in my records. I will most likely get a standing order for a home nurse to give me IV fluids as I need them.

I am feeling a little better but still smiling. Keep fighting all you fellow chronic illness warriors and never give up.

 

 

 

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Passing Out & Soaking The Bed In Sweat

9 Nov

boy-sweating

 

Soaked The Bed In Sweat

I just woke up from passing out in my bed earlier. My bed and pillow are literally soaking wet and my pillow feels like it weighs 15 lbs. I am a late sleeper (if you can call it sleep) I usually go to bed when the sun rises and stare at the ceiling all day until I fall asleep then wake around dinner (my breakfast/lunch/dinner all in one).

I started to feel dizzy after dinner tonight and the room was spinning while I was laying in my chair so I got up and stumbled to my bed. I had one of my usual episodes where I can’t stay conscious, talk or move so my only option is to sleep it off. I remember opening my eyes a few times with a dry mouth and wanting water so bad but I couldn’t move to reach for the bottle.

I woke up a few times during this 4 hour passing out “nap” drenched in sweat but again couldn’t move my head out of the cold pool of wet on my pillow. I am used to sweating I have had babesia forever and other issues so I have been soaking the bed for a good 20 years or more. But this was a lot of sweat though. Kind of feels refreshing when I sweat a lot and detox some.

I just hate these episodes because nobody was home to tell that I couldn’t stay awake. They usually happen late at night when nobody is awake. I just never know if I should go to the ER or if it is just my body wanting sleep from the Lupus/CFS. I could get robbed and not ever hear them or wake up.

Just thought I would share this and see if this happens to anyone else (the can’t keep conscious part not the sweating).

 

Keep up the fight!

 

 

 

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Quick Update

8 Nov

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Quick Update

I am not feeling so great lately, worse than usual. Haven’t been able to keep up with my blog. I was supposed to see my Lyme doctor this week to get many blood results (mold, heavy metal..etc) but they canceled my appointment since most of my results weren’t ready.My new appointment is in Dec now.

I have been more feverish, chills, headaches, pain more severe than usual. It may be just a long flare. I am still not on antibiotics just detoxing and cleaning out my body which seems to be doing nothing. Sweating and fever right now so it’s off to lay in bed for me. Take care.

I want to remind you all never to give up. Keep fighting and find a reason to smile today. We will get through this.

 

 

 

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