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Lyme Disease

Oct 09, 2009 - 7 comments
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myalgia

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Joint Pain

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Burning Skin

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Lyme Disease

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Erythromelalgia

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Arthritis

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Heart

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Pain

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lyme

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Alzheimer's

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idsa



Just thought I'd write this entry to inform all that view it that Lyme disease is in Utah.  I have Lyme disease.  Educate yourselves.  View the movie "Under Our Skin."  Many older physicians are uneducated when it comes to Lyme disease and that includes infectious disease doctors.  The younger up and coming physicians are a bit more aware of the controversy as well as Lyme disease issues.  If you think you have Lyme, I recommend ILADS.org and Lymedisease.org and read up on the information, then find yourself an LLMD.  

There are so many symptoms and I am all too tired to write them so I will give you my major ones but symptoms can vary among people because when it gets into your central nervous system and/or brain just think about what functions they control in your body.  So wherever the bacteria happens to attack in your CNS or brain, that's the symptom or symptoms you will get.  Lyme is often misdiagnosed as Fibromyalgia, Multiple Sclerosis, Lupus, Parkinson's disease and ALS, (Lou Gehrig's disease).  In one study by Alan MacDonald, MD Pathologist, he looked at 10 Alzheimer brain DNA that he received from the Harvard Brain Bank and found the Lyme bacteria in 7 of those 10 brains.  His studies can be viewed at the National Institutes of Health as well as other reputable institutions and journals.

My symptoms:

Erythromelalgia -  Erythro means red and algia means pain.  This was the first symptom I had after the onset of a "mono-like" illness.  When it is acting up they swell, get red and hot, sometimes not painfully and other times they burn.  This mono-like illness, interestingly enough, produced a high neutrophil count on the CBCs that were out of whack.  That is something I point out because anyone who knows what mono does to a CBC count would know that mono actually would make your lymphocyte count go up and a high neutrophil count generally indicates a bacterial infection.  Mono is a virus!!!!

I also had very high viral titers, HHV6, Parovirus, CMV and EBV.  When your immune system is weakened with the Lyme, any previous viruses can be reactivated in your body.  Everyone has dormant viruses in their body.  They are usually kept under control, but a weakened immune system brings them all back....fun stuff.

Arthritis -  This migrates, and will show up places where you never had pain in your life.  My hips are one example.  One day I just woke up and my hips felt frozen.  I had to shuffle like you would imagine a 90-year-old walking.  Now it is severe in my knees and the hips are not bad.  My hands and feet almost always hurt in sync.

Myalgia - This was so significant that I (a former gymnast) could not walk up one flight of stairs without my legs literally shaking beneath me.  It has moved from my thighs to my calves but it's still present in the thighs.  The severity is just worst now in my calves.  There was also a time that I could not hold a blow dryer because my left arm was so weak.

Brain Fog - This was much worse at onset and it was serious.  It was like I could not clear my mind or my vision would not align.  It's hard to explain.  Think of that feeling you have on the day you woke up the most tired in your life except that unlike normal people, that stays with you all day instead of the five to ten minutes it takes you to wake up.  Now I have memory problems.  I can't remember constantly why I went into a certain room.  I can't remember neighbor's first names (for some reason last names are not so difficult).  I have slower word recall.

Chest Pain -  I was told this was GERD yet the medicine never took care of it fully.  I thought I was having a heart attack one evening and had to go to the ER.  This has only occurred once in the last 6 months but the year before that there were at least four episodes.

No Appetite - I have no desire to eat whatsoever and only do so because I know I have to.  I completely lost all craving for food.  I sometimes forget that I haven't eaten because there literally is no desire there.  If it's flaring up badly, you could put a feast in front of me and it wouldn't tempt me at all.  This is actually one of the things I miss the most about being well.  I miss the taste and pleasure of enjoying food.  Food now is just life support for me.

Things started smelling bad, though I was the only family member who thought it smelled bad.  It's a neurological symptom.

Ringing in My Ears - My ears ring almost daily from this.  At times I get an extremely loud pulse sound which isn't my heart I  guess but the blood pulsing through my veins.  It was so loud I was not able to sleep.  I get high pitched sounds and low hum-type sounds and the sound like a little miner just tapping away in my ear.

Extremely Tender Muscles - I started physical therapy some months back because at that point I still had no diagnosis and I thought maybe that would help me get my strength back.  I highly recommend this for all Lymies.  The PT gave me a stick to use to roll over those muscles and I do it because it helps flatten them so they feel better for a time, but when I roll it feels as though I am rolling over dark, fresh bruises.  It's very painful, but I do it because I know afterward it will keep my muscles from contracting for a few hours at least.
  
You can read some of my earlier posts as I was trying to find out what was wrong with me.  I was grasping at straws.  Hope this helps someone else.  Lyme disease is the 5th most common disease in American and the No.1 vector-borne disease in America, and YES I TESTED CDC POSITIVE!  And NO, I will not get treatment from any doctor who follows the IDSA guidelines as they are flawed to the umpteenth degree.  Lyme tests are flawed and generally produce false negatives much more often than false positives so do not think just because you are negative that you do not have Lyme.  This is a misconception put out by the IDSA which settled an antitrust investigation with the Connecticut Attorney General, then violated a settlement agreement after a new IDSA panel was chosen in July of 2009 and to this day (2013) still bury their heads in the sand.  Senator Blumenthal of Connecticut has been very helpful to the Lyme community as well as other politicians.  

Lyme is a horrible disease.  It took me from a very happy-go-lucky, physically active person to someone who now has learned to live with limitations.  The tide has definitely changed in favor of Lyme patients since 2008, but we are still fighting for better diagnosis and treatment.  My children will have better doctors when they are my age because at that point nearly every doctor will have known an individual with Lyme and the IDSA won't be able to continue to deny evidence.  Sounds conspiracy theory, I know.  I'm a former court reporter and I have always believed that evidence is the best way to prove a point.  I've done my research and the evidence is in favor of Lyme patients, not the IDSA.

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by wonko, Oct 10, 2009
Well put.  I hope that your honest story does help another in finding answers.  I know that without online support and testimonials like yours, I would not have gotten my Lyme diagnosis.

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by Geordie212, Oct 10, 2009
Your description is so easy to read and understand. Too bad that so many Doctors, I D Specialists and other scientists do not believe that Lyme disease is real and debilitating. All I can say is Hang in there - you are not alone!!


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by foreverlostmom, May 17, 2010
have you found a doctor in Utah?

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by Weesy68, May 18, 2010
The doctor I see is not in Utah.  I see my doctor every three months and consult by phone inbetween.  My doc. follows the ILADS protocol and is much less expensive than the one in Utah that was treating.  My doctor was recommended to me by ILADS.org.  That is the organization I would speak with if you  are looking for an LLMD in your area.

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by DontBelieveIt, Aug 20, 2010
thanks for telling us this Weesy. I went to find a doctor on Lyme Disease Association and the only one that came up in our town said on his website, his initial office visit was $475! Wow, that's a huge bill for someone without health insurance and without a full time job!
  Our next door neighbor has been feeding deer for years now. I used to find it cute to see deer in the yard, but after having countless times of not being able to safely even walk outside for there were huge bucks outside our doors with 8-10 point antlers and allmost getting our car hit by 3-4 deer running across our drive, literally dozens of times. I no longer find deer "cute". I see them as highly dangerous and don't want them around at all.
Unfortunately the local police will do nothing to help us or protect us at all. We saw two huge bucks with their antlers locked together in combat right outside our bedroom window with a little female doe standing right next to them, twitching her tail last year.
  When we called the animal control, instead the APD answered instead in insisted that "it would be okay to step outside, once we did the bucks would run away!"
   The dispatcher refused to even give us out her name, but insisted she was, instead dispatcher #1400! What a stupid, dangerous thing to tell people, to go outside when there's wild bucks out there, locked in battle. That's mating season and it's not safe to be around bucks during that time!
  Someone ought to sue Asheville Police Department. Now we have Lyme Disease too and are getting deer ticks inside our house but the landlord won't do a thing about it. I've asked him months & months ago to ask the neighbors to stop putting food & salt blocks out for the deer but he refused to do so, instead stating he'd call the animal control instead.
I don't even know if he did call the animal control, for there's a law against feeding deer in our town, if it becomes a nuisance. There's still a salt block out in their yard, (the neighbors even told me they were using the salt block to attract bucks so they could collect their antlers) and to this day and our lives are being put in danger on a daily basis, but he doesn't even seem to care, as long as he gets his rent paid!
  well, if I'm too sick to work, or get killed by having our vehicles struck by a deer, I'm sure not going to be able to pay the rent! What a negligent, uncaring landlord I have!
  I don't know where I'm going to go now.. I do know of another doctor nearby who treats people for Lyme Disease. I know a lady who got it too. She had a huge bull's eye rash on her that covered half her back, but her doctor charges $400 just to preliminary tests for things like liver, blood, etc, and that doesn't even include the initial office visit to see him!
  Wow.. this disease is so dangerous and so expensive to treat!

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by DontBelieveIt, Aug 20, 2010
So, the attorney general of the state of Connecticut is fighting the IDSA over their restrictive & prohibitive guidelines in treating Lyme Disease patients then?
  That's great! Connecticut rocks! They got smart people there, but go figure, that's where Lyme disease got its name.

I wonder if there's plethoras of Lyme disease literate doctors in Connecticut? I'd go up there. It's nice in the fall too, which is coming soon.

Anyone know of any good doctors in CT specializing in lyme disease?

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by DontBelieveIt, Aug 20, 2010
Dear Weesy,
I just looked at the website you recommend, the ILADS.org but couldn't find a doctor there on their website. I did write them however and tell them I'm having trouble finding a doctor.
Is that what you did to find your present doctor? I'm getting very afraid here, for I've had this disease probably at least 8 months now, judging from the time I first saw the bulleye's rash on my arm. I don't think I took a photo of it either, but I know I had it.
That bulleye's rash is the strangest thing you'll ever see on yourself! Oh, the general public BADLY needs to be informed of this disease.
  
  I wish that TV stations would start having commercials on what to look for regarding Lyme Disease. I wonder if we could start writing our local TV stations and actually get them to acknowledge that Lyme Disease is rampant out there and what to watch for and also give us advice on who can sucessfully treat us.
  I just cannot believe that such a simple disease to treat initially can cause such devastation to one's life, but the medical community wants to be like a camel with its head in the sand!

This so violates the oath that doctors take to get their medical license!

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