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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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Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

11 Apr

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Neurologist: Surgery Needed ASAP To Avoid Being A “Quadriplegic” – Lyme Ruined My Spine?

After losing the ability to walk recently my walking slowly came back. Vertigo has not been my friend though so I never walk like a “normal” person. I knew my body was telling me something and I bought a wheelchair because I could feel something was wrong. My body was right so always listen to it. I had a lot of bad news this week not just about me so let’s just say I am a walking zombie.

At my neurologist appointment today the neurologist said “why did you come to me, you need to see a neuro surgeon asap”. He did the standard muscle testing and poked needles in my body and I couldn’t feel most of them. I have numb, cold areas down my spine, legs and feet do not work well, a lot of spinal pain. My arms are really numb and couldn’t feel the safety pins he stuck in them.

The neuro said “you are very close to becoming a quadriplegic and you should have had surgery back in 2010″. Well back then my Lyme doc said “no surgery” due to the antibiotics and the neuro surgeon told me not to come back until I was losing feeling in my arms because the surgery is not the greatest and try to get by as long as I can.

I was told by my LLMD and by my new LLND that Lyme can ruin the spine. So I am not 100% sure if this is Lyme related or just a coincidence. But how does ones discs herniate when they just lay in a bed all day and barely walk around the house? The doctors seem to think I am out playing sports.

I am going to remain positive and know that this surgery will help keep me from being a quadriplegic. I am now looking at options for surgery so if anyone has feedback good or bad feel free to comment. I am thinking about the laser surgery in Arizona versus the standard plates and screws.

I was looking at the Laser Spine Institute in Arizona. Any feedback? Better than normal surgery?

http://www.laserspineinstitute.com/back_problems/spinal_stenosis/treatment/surgery/

 

 

– Hope you all are having a better day. Keep your head up better days are ahead.

 

PS I haven’t slept in 24 hours so I may not be really writing this and just hallucinating. LOL

 

 

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Visit To New Secondary Lyme Doc LLND

2 Apr

Puzzled male shrugging wearing lab coat

 

Visit To New Lyme Doc LLND

Do you ever leave your doctor’s office feeling like you have accomplished nothing and wonder why you even used all your spoons for the day on the visit? That was this visit today. I left feeling like “here we go again”. The picture above looks just like how my doctors face looked. This is why I was hesitant to see anyone besides an LLMD.

My LLMD is pretty far away and always booked so I have been searching for a closer doctor who treats Lyme just for the bad days and a place to get refills easier. I found an LLND after hearing good things about him. He was trained under my current LLMD. This LLND also takes my Medicare so that was a huge plus. 80% of my bills will be reimbursed.

So….the doctor walks in and introduces himself and then asks me (Mr. No brains or memory) to tell him all about me and my medical history. Of course I have my mom there as always but he wants to know from me. I am sitting there struggling to find words or talk and forgetting dates. I finally told him “I have no idea what day or month it is so this is really hard”, he didn’t seem to care. I also forgot to take my pain meds for the day so I was squirming in my chair bitting my lip in pain.

He was taking notes and wanted very specific dates of for example; “what month/year did your IBS start”….etc. I can see how this is helpful info and he needs to know but between myself and my mom we had to guess on everything. Then if we were off by 3-4 months he would say “wait you just told me Dec of 2008 but this was Jan of 2009 so I am confused”. I wanted to say “just ballpark range it, I don’t know!!”

The point of this trip was to see why I have lost my ability to walk (which has improved slightly), if lyme is the cause of the issue, and also to get different pain meds such as the fentanyl patch and refill xanax. Well being a nature path he was unwilling to fill any prescriptions. He also said he’s only treated 6-8 patients with antibiotics for Lyme and he was not willing to help me with that he would just send me back to my LLMD.

His advice on the walking issue was to “see my primary doctor or neuro” …well duh but they do not believe in Lyme that’s why I came to you! His advice on getting my prescriptions was to “see my primary doctor”. I asked his advice on what supplements he recommends that would benefit me being so ill that I do not already tale on my long lost I handed him…. his response “why are you taking two forms of turmeric”. So basically no answer.  Thanks for nothing.

He wanted all new blood work for everything and didn’t really care that my LLMD said I have chronic lyme, babesia, bartonella he wants to have his own tests done. I almost felt like he was an IDSA doctor. I mean I know he believes me but he wants solid proof before he treats me with whatever meds (supplements) he says he can help get me “normal” again. His nurses said he “works miracles” and I have heard he does so that is the only reason I am trying him out.

My quality of life is poor and feeling like dying daily and never seeing the outside world is no way to live. When I tell the doctors how I live I know they think I am exaggerating but I am not. My day can be summed up in one sentence; I wake up, walk to the living room to lay in my chair to watch tv, eat dinner, and then go to bed and lay there until I fall sleep if I can…period.

The pros: The doctor did rule out any mold issues. He also said my herniated discs in my c-spine and back are most likely from lyme disease which confirmed what my LLMD told me. He ordered too many blood tests to write here or remember so there will be a ton of results in 3 weeks to go over. He did say he can help me with my thyroid.

So once again I left another doctor office feeling just as lost and confused as always. I hope he will find something solid in my blood work and he will at least try to help me instead of sending me back to my LLMD. He is the same guy I called 6 months ago for an appointment and he said I was “too complicated to treat”. I told him this time I just want to try his methods of treatment out if he could just give me an appointment but I can tell he doesn’t want to treat me.

Now all of the above sounds like a bad day but to me I look at the positive from the day. I was able to get out of the house, the clouds in the sky were beautiful and I got some fresh air. So it wasn’t a bad day at all. Took a shot of the car ride and sky and was able to edit the picture below. Enjoy the little things and always try to smile.

 

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– Have a wonderful week and hugs to all of you in pain and feeling alone.

 

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Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb

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Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…

 

 

 

 

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First Visit To My New Primary Doctor

28 Nov

 

 

First Visit To Primary Doctor

After losing my good insurance I used to have while employed I was put on many county and state insurances that only allowed me to go to free clinics. For the last 3 years I was unable to follow up with my doctors I have been going to for the past 10-20 years. Plus with Lyme your primary, rheum, specialists do not believe in chronic lyme so it makes you not want to see one.

Now that i have Medicare I needed to establish a primary doctor so when I visit the ER I can say I have a doctor and I need someone besides my LLMD to check up on thyroid issues and all the other non-lyme issues.

So as usual I had such a wonderful visit with my new doctor. She walks in and says “why do you have an IV in your arm!”. Then she asks me what medical issues I have an I got the usual responses. I told her about my chronic lyme and she tells me how she knows I do not have chronic lyme (even though she knows nothing about me). She tried to convince me how chronic lyme is very rare and people that have it have heart attacks only so that is why I do not have it.

She asked me “so why do you think you have lyme disease what are you symptoms”….as I am sitting their in pain and can barely talk, think or speak. So I said which of the hundreds of my symptoms do you want to know about. So I name a few and her reply was “these are all very common symptoms”.

I tried to mention my MTHFR double mutation, mold issues, mycoplasma…etc and she says those are all nothing to worry about and you don’t need medicine for them. I mentioned Babesia, Bartonella which she ignored.

So she wants to test me for HIV, Hep C, Syphilis… all these have symptoms I don’t have and they don’t have hundreds of symptoms just numerous ones. So I can already tell that my tests will be negative. She said my high ANA’s (Lupus) were also probably just a fluke and I don’t have Lupus either. She says I just have Fibromyalgia and CFS (as I already know I have).

The problem is that I have way more symptoms on top of my Fibromyaglia (FMS) and Chronic Fatigue Syndrome (CFS) that are not FMS and CFS related but doctors don’t like when you bring up symptoms or know things they do not. She thinks I am new to being ill when I have 30 years experience and too many idiot doctors to count who misdiagnosed me or treated me wrong.

I hate going to the doctor because they make you feel like you are just being a big baby and your pain is not as bad as you think. They make you feel lazy and fat. She tells me I need to exercise which is easy to say when you are not dizzy and running into things, in pain 24/7 … etc.

She referred me to another rheumatologist. Here we go again with the run around. She made me take my IV out and took me off all my Lyme meds because she said the meds I am on are all the worst and will damage my body. She said the IV will ruin my vein. Which I agreed with so I allowed her to take the IV out and stop the meds. After my Candida scare a while back I don’t want to go through that again, I almost lost a part of me.

I know doctors and LLMD’s don’t get along and mock each other but I am not a fan of either. My LLMD knows I am broke yet they push all these expensive meds on me and they get pricier each month. I never get a break from all the antibiotic and my body is paying for it with c-diff and candida…etc. I am not some lab rat and if I want to take a break it is my body.

On the other hand primary doctors are uneducated and they lack compassion. They read one thing about lyme in a book in college and that is what they live by. Who cares that you are sick and in pain and have proof you have lyme they know better than you and make you feel stupid.

Primary doctors always piss me off within 2 minutes of talking where I do not want to talk or fight anymore with them. I let them do their blood tests and think they know what is wrong with me. They never think outside the box or try to be like Dr House on TV and find out the real problem. When they give up trying to find out what is wrong with me they just make up some bullshit story and blame it all on Fibromyalgia. “Oh your arm fell off and you have 105 fever every night well then it’s either depression, Fibro or in your head”. Sigh

I am so lost right now and I DO NOT trust any doctors at all. I have yet to meet one who listens to me, feels my pain or knows what I am going through. They always just assume when you say you are in pain that you have the same tiny pains every other person has. I literally feel like I am dying I am not just using the word “dying” incorrectly!

 

 

 

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Chronic Fatigue Syndrome (CFS) – Lack Of Posts

24 Jul

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Lack Of Posts – CFS

I knew the CFS would hit me full force again one day. Last month the fatigue started getting worse again. I have it all the time but it seems to come in flares even worse like the Lyme flares and Fibro flares. It is bad enough where lifting my arms requires a lot of work since they feel like lead weights. Chronic Fatigue Syndrome can be caused by your other illnesses or other factors.

I haven’t been able to keep up with posts or be active in the Lyme community lately since I am just too exhausted mentally to write and physically to get on the computer. I just want to lay down and watch TV and not have to think. I’m sure you all can relate.

I doesn’t seem like a lot of work to write a blog or keep up with your life’s daily journal like this blog is for me. When you have chronic Lyme disease, hypothyroidism, CFS, FMS and many other medical issues writing these blogs are like a full days plus overtime work to a healthy person. It can really drain what little I have left in my batteries.

When I was healthy I had worked 7 days a week for months and 16 hour days so I know what being exhausted felt like. This while having little to no sleep and working very physically demanding jobs. You get home and just collapse and your brain is fried from all of the thinking and engineering. I can honestly say that exhaustion when I was healthy is nothing compared to the exhaustion and fatigue I feel now. Now you don’t heal or bounce back the next day but just continue to feel that crappy everyday.

Now it is more like just being hit by a car, having the flu and then going to work a 16 hour shift down in the coal mines. That is what just one day feels like and everyday. I feel sluggish and like my body is made of stone. I know many people that have Lyme disease or fatigue that say it is not that bad yet but those who have it bad like me should be about to relate.

I cannot wait until the day I can get out of this horrible nightmare. At my last LLMD appointment I asked for meds to help me with the fatigue and cognitive issues that are getting worse such as my memory. So far they do not seem to be helping.

My insomnia and CFS do not get along at all. I still stay up until the sun rises about 6-8am. When my insomnia is worse than the CFS I will sleep maybe 30 minutes and be awake all day and night like a zombie. I can hear a mouse walking 5 houses down. When the CFS is bad nothing can wake me and I feel like I am sleeping in a coma, it is hard to open my eyes to get up to take meds and eat. It is weird to feel so exhausted and my body and mind want to sleep yet my insomnia keeps me up so late.

 

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For Those Who Don’t Know What CFS Is

Chronic fatigue syndrome

CFS; Fatigue – chronic; Immune dysfunction syndrome; Myalgic encephalomyelitis (ME)

Chronic fatigue syndrome refers to severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions.

See also: Fatigue

Causes, incidence, and risk factors

The exact cause of chronic fatigue syndrome (CFS) is unknown. Some theories suggest CFS may be due to:

  • Epstein-Barr virus or human herpes virus-6 (HHV-6); however, no specific virus has been identified as the cause
  • Inflammation in the nervous system, because of a faulty immune system response

The following may also play a role in the development of CFS:

  • Your age
  • Previous illnesses
  • Stress
  • Genetics
  • Environmental factors

CFS most commonly occurs in women ages 30 to 50.

Symptoms

Symptoms of CFS are similar to those of the flu and other common viral infections, and include muscle aches, headache, and extreme fatigue. However, symptoms of CFS last for 6 months or more.

The main symptom of CFS is extreme tiredness (fatigue), which is:

  • New
  • Lasts at least 6 months
  • Not relieved by bed rest
  • Severe enough to keep you from participating in certain activities

Other symptoms include:

  • Feeling extremely tired for more than 24 hours after exercise that would normally be considered easy
  • Feeling unrefreshed after sleeping for a proper amount of time
  • Forgetfulness
  • Concentration problems
  • Confusion
  • Joint pain but no swelling or redness
  • Headaches that differ from those you have had in the past
  • Irritability
  • Mild fever (101 degrees F or less)
  • Muscle aches (myalgias)
  • Muscle weakness, all over or multiple locations, not explained by any known disorder
  • Sore throat
  • Sore lymph nodes in the neck or under the arms

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Stiff Neck Problems

10 Jun

Stiff Neck

Today I woke up with a really bad stiff neck that runs from about half way up my neck, under my shoulder blades, across my chest and all the way down my spine. Not your typical stiff neck but it is one I am used to. I have been dealing with stiff neck issues since I was a child.

The pain has radiated where my Fibromyaglia is always the worst for me and that is in my shoulders and under my shoulder blades. Even though I always have this pain anywhere from a 6-12 on the pain scale all over my body I can feel the stiff neck pain since it is more intense with moving my neck.

I have herniated discs in C-Spine 5-7 so maybe a nerve is being pinched but usually that runs down both arms all the time. This pain is on my left side only. It runs down the left side of my neck, down the left side of my spine down to about the lower back. I have a few different patches on right now, I took 2 flexeril and 2 Norco but that does not seem to be helping take the edge off.

As a child I used to get stiff necks often and they could hit me even while walking. Sometimes it is caused by the way I sleep yet other times it just comes whenever it feels like it.

I remember one time as a kid I had a really bad stiff neck so I took a hot shower to see if it would help. I remember waking up on the floor of the shower and my parents carried me into my bed. I don’t know why it made me pass out.

My lymphs in my lower neck used to fill up and be as big as and as hard as small rubber bouncing balls. If I turned my neck I would get a shock and hear a popping sound. After that my neck would be stiff for a few days. I am not sure if this was Lyme disease related or not but ti sure sounds like it.

These current stiff necks are really annoying and painful. When I turn my head slightly it makes me eyes shut and I make a weird looking face. The stiff neck causes a headache if I turn my head too long.

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