Lyme on my mind

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Astrid13 recalls the alarming mental confusion associated with her life of chronic illness and explains how her own search for answers may finally be yielding results - though she still has a long road to travel...

Bad day

In 2006, following a miscarriage, I began to suffer the most horrible cognitive decline.​

A D&C had been performed under general anesthesia and after a brief recovery at the hospital, I was free to go home.​

However, the days that followed began what was to become the most confusing and alarming time of my life.​

My hormones were raging, my emotions were going haywire, and I was convinced that I had also left my brain in that cold and sterile Operating Room.

I began to mill around at home, a place I had lived in for the past 2 years and was quite familiar with. I remember making a cup of soup and then beginning to do the dishes.

But as I reached up to activate the garbage disposal, I no longer knew which of the 3 toggle switches on the tile backsplash controlled the disposal function. I froze...

It is ironic that a series of electrical switches baffled me because I also felt it was literally as if someone had flipped a switch in that high functioning part of my brain.

My days were riddled with pain and disorientation...

I got lost going to work, I got lost coming home. I carefully paid the bills using checks and paper statements. I meticulously placed the payment in the envelopes, affixed proper postage and walked the bills to the mailbox located down the street.

For two days I searched for that pile of bills. I contacted each company and arranged for payments over the phone and paid each one. I had zero recollection of paying the bills the two short days previously. It wasn't until the businesses contacted me one-by-one that I realized I must've forgotten the entire process.

My husband and I took a week long trip to White River, Arkansas. I lost everything I touched. Keys to the RV, our camera, my cell phone. My sanity. From those times and through the years that followed, “normal cognition” no longer seemed to apply!

I'd be lucky to remember my birthday, not to mention anything less meaningful. I was swimming through mud each and every day. I was scared and shaken.

I began seeking help for depression after my husband came home to find me sitting in the dark on the cold slate of the bathroom floor, lightly banging my head on the full length mirror. I was lost and no one could find me or my 30 year old brain.


Link to trailer

A slew of diagnoses ensued - Depression, possible Bipolar 2, general anxiety disorder, Narcolepsy, ADHD, Fibromyalgia, and more. I was admitted to the ER under the stroke protocol and in less than a year, I suffered a series of seizures as well as catatonia.

The only task that I felt able to perform was powered by Google. I was on the computer around the clock researching global amnesia, and according to the information I found, my brain would begin to recall pertinent information again in due course and by itself.

But that never happened - I continued to deteriorate and suffer.

It wasn't until April 2013 that I received a big break. Although my brain was the first to go, my body had soon followed. The arthritis-like feeling in my neck, hips, and fingers had left me reeling in pain, with no explanation or relief.

A stranger to Pinterest, I was piddling around on Fibromyalgia forums in search of homeopathic bath soaks, when low and behold, I saw a notice for "Under Our Skin."

This is an award-winning feature-length documentary about Chronic Lyme Disease, and I immediately felt the remaining pieces of my puzzling decline were finally within reach.

Diagnosis and treatment...

The Symptoms of Chronic Lyme Disease - image supplied by author

Over the next 2 months, I diligently researched Chronic Lyme Disease and officially received my diagnosis on July 3, 2013.

I had been bitten by something in Arkansas 7 years prior. There was no EM (Erythema Migrans) or “Bull's Eye” rash that I can recall, and I never saw the tick that got a piece of my left hip.

Perhaps I never noticed, because a nymph tick is size of a poppy seed and can go undetected for days before it is discovered, or falls off of its own accord.

I was infected with Lyme Disease that had primarily attacked my brain and had then stealthily moved on to a host of other body systems and organs.

Currently, I am forced to travel out-of-state for treatment. It is a painful but, I feel, necessary, 8 hour drive every 4-6 weeks.

I need a PICC Line (Peripherally Inserted Central Catheter) and IV treatment because I suffer from Neuro Lyme or Neuroborreliosis caused by Bb (Borrelia Burgdorferi) bacteria.

A catheter is inserted into the superior vena cava and antibiotics are administered through a port above the heart. My physician is leery of PICC because there is not a physician in my home state of Texas willing to cooperate and help keep the PICC clear of infection and complications.


My medications

I have been on a treatment protocol for 9 weeks and have been forced to take an extended leave of absence from work, where I am now at risk of losing my beloved position as an Adapted Physical Education teacher.

I am on 25 pills each day, and 4 of them are high dose antibiotics, together with 1 anti-malarial medication for one of my co-infections, Babesia, and I give myself self-administered injections 2 times a week.

Treatment has certainly been no cakewalk either!

The reaction from the medications coupled with the debilitating Lyme symptoms leave me bedridden most days. Unable to work or care for my children, unable to leave the house or see the sunshine.

I am expected to make a recovery, but I am facing 3-5 years of treatment. The antibiotic route is the best for me at this time because I have been infected with Lyme and Babesia for 7 years and Bartonella for 27 years from Cat Scratch Fever at 8 years old that wasn't properly treated.

It is a long and bumpy road, but despite it all, I do feel I am one of the lucky few. I have answers. I have direction. I have support. It wasn't always the case, but I encourage each of you to be your own advocate when doors slam in your face and your standard labs come back normal.

I had contacted the specialty lab, Igenex, in Palo Alto, CA. I convinced a physician at a local walk-in clinic to sign the orders. I received the results directly 4-6 weeks prior to getting in to see my LLMD (Lyme Literate Medical Doctor).

My relentless Google powered efforts are paying off. So keep up the fight. You are worth it and no one need fight alone.



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Comments

Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.
 
Thanks for telling your story!
I discovered I have Bart and Lyme this year!
 
Watch this movie...you will be glad you did!
 
Thanks for writing about your experiences here and especially for alerting us to the film - I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC - some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here - how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.
 
Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.
 
I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England - it will be a long time before things improve.
I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance course of antibiotics significantly improved my symptoms a led to GP suspecting Lyme Disease ( other patients had been diagnosed at my surgery in Guildford Surrey)
My NHS and later IgeneX tests were negative but my response to antibiotics was sufficient witha clinical history of bites, bulls eye rashes summer flu and migrating arthralgias before a chronic painful debilitating illness developed.
On long term antibiotics I regained my health and life.

There are many reasons why blood tests can be negative and still a person can have lyme even Igenex says this on their test results.

There is so much information available for patients to get informed so they can make informed choices - just don't expect NHS doctors to know anything worth knowing about Lyme disease visit http://www.lymediseaseaction.org.uk/

Even if you do not think your ME could be Lyme Disease it is worth reading Dr Horowitz new book relevant for anyone with Chronic illness links to a video, a chapter of his book and amazon on my blog http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

Good luck in finding the causes of your ME and in being able to treat those causes.
 
Thank you for sharing your courage and determination!
 
Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.
My goodness!! Hello everyone! I've been rather ill since my post, but I am here now and ready to chat with you all:)
 
Dear Asrid13 your description of cognitive decline sets great bells clanging in my head and how hard it is to explain the total inability to do the simplist things. 2+2 does not equal 4, A does not followB as thought unravels.
Good luck on your journey.
Meandthecat-
Is it possible that you might have been infected with Lyme's? It can mimic 350 different diseases?
 
I live in UK and things re Lyme Disease diagnosis are rather dire although Lyme Disease Action is making some progress with Public Health England - it will be a long time before things improve.
I was diagnosed with Fibro, ME/CFS, Musculo skeletal Disease, Polymyalgia Rheumatica before a chance course of antibiotics significantly improved my symptoms a led to GP suspecting Lyme Disease ( other patients had been diagnosed at my surgery in Guildford Surrey)
My NHS and later IgeneX tests were negative but my response to antibiotics was sufficient witha clinical history of bites, bulls eye rashes summer flu and migrating arthralgias before a chronic painful debilitating illness developed.
On long term antibiotics I regained my health and life.

There are many reasons why blood tests can be negative and still a person can have lyme even Igenex says this on their test results.

There is so much information available for patients to get informed so they can make informed choices - just don't expect NHS doctors to know anything worth knowing about Lyme disease visit http://www.lymediseaseaction.org.uk/

Even if you do not think your ME could be Lyme Disease it is worth reading Dr Horowitz new book relevant for anyone with Chronic illness links to a video, a chapter of his book and amazon on my blog http://lookingatlyme.blogspot.co.uk/2013/10/infection-inflammation-immune.html

Good luck in finding the causes of your ME and in being able to treat those causes.
Yes, Marilyn60, you bring up a fantastic point. Lyme Disease must be considered even if testing yields negative results. From my studies, I've also learned that lab results can vary from day-to-day. LLMDs will still diagnosis and treat based on clinical presentation of symptoms and medical history. I am so glad that you were able to regain your health and receive proper treatment!! We are among the lucky few! Thank you so much for sharing your story and knowledge!
 
Thanks for telling your story!
I discovered I have Bart and Lyme this year!
Best of Luck to you!! It's liberating to discover the truth behind our illnesses. Please keep me posted as I am so curious about your journey and recovery to health!!
Xoxo
 
Watch this movie...you will be glad you did!
Yes, Xandoff! It's is alarmingly eye opening and informative. I suspect so many sufferers are misdiagnosed and the movie really drives that point home.
Xoxo
 
Hi Justy!
Thanks for posting:) If you were exposed to ticks at a young age and you are currently finding them on your dog, then the chances are very high that you've contracted a vector borne disease. I am not aware of any LLMDs there either, as I live in the US, but there is a large forum where you can chat with others called MD Junction. Please check it out and you can also get an Igenex lab kit sent directly to you, if you have a lab or physician willing to sign the orders.
Please keep me posted, I'd love to help you!!
Xoxo
 
Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.
Yes, I will post results today! Please remember that testing only confirms Lyme's and diagnosis should be truly based on clinical diagnosis. It is quite possible that you are still positive and that is why a Lyme Literate Medical Doctor is crucial in cases like yours. I will get the results up today and I'd love to share more with you and help you get more direction!
Xoxo
 
Please follow my blog at www.rocasvida.com
It is a wealth of information for anyone that suspects Lyme may be the culprit in their medical woes. It also encourages us all to take matters and become our own health advocates!
 
Thanks, amazed at the similarities we all have and yet a few differences. Curious about your IGenex results. I'm trying to determine if I have Lyme, my gp says no based on NEG IGenex even though there are a few INDs /+s, also had low CD57 of 55. If you dont mind would you share your IGenex results. A lot of confusion about Lyme diagnosis so feel better when I see other peoples results. I've been fighting this 'mystery illness' since 2005-2006 and I'm fed up. I dont want Lyme I just want answers and I'm not sure my GP really has the knowledge to rule out Lyme.
Hi Roxie60,
Here ya go...
Lyme IgG Western Blot
**31 +
**34 +
**39 Ind
**41 +++ (triple intensity!!)
58 +
**83-93 Ind
Igenex Positive
CDC Negative

Lyme IgM Western Blot
18 +
**23-25 Ind
** 31 ++
** 39 Ind
** 41 +
58 ++
**83-93 Ind
Igenex Positive
CDC Negative

IFA, B Burgdorferi Results= 40
<40 Negative
40 Equivocal
= or > 80 Positive

CD57 Results-
CD57 NK Absolute CT= 67

<40 Low
40-98 borderline
>98 Normal

CD57 NK Cells % Lympho=2.26

<2.26. Low
2.26-4.65 Borderline
>4.65 Normal

Please send me yours and I will help you sift through them!!
You may also want to retest if it's been awhile. I know that it's costly, but at this point, every bit of our illnesses rob us of so many things.
I'd be glad to help in anyway!
Xoxo
 
Astrid13:

Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive - IGG negative). CD57 of 4!!

She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on the right track.

Good luck and hope you are feeling better soon.