Topic: How to explain late stage and neuro lyme disease.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I have Disseminated Lyme Disease from a tick bite that didn't get treated on time.
This is an antibiotic resistant infection of the brain (a form of meningitis), other organs of the body, and the joints.
Although I look fine, this disease causes me a great deal of pain throughout my body, overwhelming fatigue, and sometimes mental disorientation.
The late stage lyme bacteria is very good at evading the immune system and resisting antibiotics. Treatment may take a year or longer, and the drugs I have to take make me feel very sick.
We are going to be dealing with this for a long time. My family and I could use your understanding, support, and friendship while we get through this difficult period in our lives.
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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daise
Unregistered
posted
That's wonderful, bejoy. For the newbies, especially, it's ready to read to friends and family.
It's convenient, doggone it! One less thing for a neurally ill person to have to do. They can't memorize it because they have Lyme. They can just read it, outloud.
I'll have to remember this thread so I can post it as need be.
It's written from your heart.
No doubt, you have the experience and insight to post it for others to use.
You went through a lot of friends and family pain? Yes.
Thank you for this. I have been having a rough go of it on this, my 2nd year anniversary of treatment.
It was a helpful reminder to try and be kinder to myself too!
Best,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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bettyg
Unregistered
posted
joy, you're on a roll writing these heartfelt stories and advising people how they can help us or be aware of things!!! KUDOS!
i'll add it TOO to my newbie/support info where your other letter is with several other people's work: lymedad, and texas dar!
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Thanks guys. It took me a long time to figure out how to explain what I was dealing with, without being defensive or apologetic.
This is all people need to know, plain and simple. If they want to know more, they can ask.
It might be helpful for some people to send this explanation out to their email list, just so many of the people in their lives have an idea of what they are dealing with, and the duration.
Then the true friends will step forward, and those afraid of illness or misfortune can fade away.
Yes, we did lose most of our friends before my diagnosis. They might have been more supportive if there had been some explanation for my unsocial behavior.
You hang in there, wiserforit! There is light at the end of this tunnel.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Bejoy,
Thanks, that is a great description, and I am going to use it. Very well said!!
For me, I will probably change "may take a year..." to "may take two years or longer." Also, I will add a line about antibiotic-resistant co-infections.
Take care.
Posts: 2557 | From home | Registered: Aug 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's another:
I have Neuro-Borreliosis. It is an antibiotic resistant bacterial infection of the brain and central nervous system. It came from a bad case of Lyme disease that went undiagnosed and untreated for a long time. Treatment can take a couple of years or more of intensive antibiotic therapy.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
bejoy-Well said. I will have to repeat those words to quite a few people.
DISORIENTATION- great description. I have tried to describe the feeling to so many people but they can't possibly GET iT unless they have had it too.
Does anyone have fog or disorientation that comes(mostly) but sometimes goes????
Sometimes the disorientation can be better for a few hours and my neuropathic brutal pain kicks in. Other times like now I am totally foggy but have little pain.
As bad as the pain can be it feels so good for my head to feel "normal"
Then again- sometimes I have both disorientaion and pain and I don't know what to do with myself!
Thanks for letting me vent. I don't know where I would be without this Forum and some of the people I have been talking to for support!
wiserforit-Thanks for everything. I will be thinking of you on April Fools day!!!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Thanks Laurie. I chose the words "mental disorientation" carefully.
Those are words that describe the phenomenon without attaching too much of a stigma, when sharing with the general public.
What I really mean to say is: a screaming emotional basket case, lucky to find my way out of a paper bag, and an inability to make sense of an episode of Barney.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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thanks for the laugh..... I have sooooo many days like that....
Laurie.....
you said.....
Sometimes the disorientation can be better for a few hours and my neuropathic brutal pain kicks in. Other times like now I am totally foggy but have little pain.
As bad as the pain can be it feels so good for my head to feel "normal"
Then again- sometimes I have both disorientaion and pain and I don't know what to do with myself!
I feel this exact way everday......... its hard to have a productive day not knowing what symptoms are going to pop-up and when...... very frustrating!!
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i've reached the point where i say to acquaintances or new folk in my life--
i know I look normal to you, and if we don't have a long or detailed conversation, i may even sound normal to you, but i have encephalitis of the brain, which means it takes me awhile to understand what you are saying to me. Please be patient.
Virtually everyone has heard of encephalitis and it helps as well that everyone knows it is a serious condition.
Most are surprised to hear that Lyme can cause encephalitis, etc., The advantage I've found in plopping that term down up front is in not having to overcome the ignorance of most that Lyme is not serious.
its always good to hear from you, bejoy,and its never a surprise that you are here to help others.
hope all is still well.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< Bejoy and All'a'y'all >>>>>,
May a BB'benumbed brain ask a question?
Is the Disseminated Lyme the same as, bb bacterium causing 'White matter lesion disease' on the brain? Or other simular problems?
My Brain MRI showed White matter lesion disease late summer '06.I am pretty sure it is at least close to waht you are describing?!
If it is I'll use this description w/ grateful thanx!
Love Silverwolf of patchy numbness,headaches and too much other symptoms!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Silverwolf,
"Diseminated" is a fancy word that that means that an infection has travelled throughout the organs of the body.
So yes, you have that. You also have an even fancier word that tells how it has affected your brain.
It's still the same old BB bacteria. A rose is a rose, don't ya know.
I like words that let people know that this isn't the lyme they have heard of, the one similar to a simple ten day case of the flu.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Bejoy >>>>> Thank you for the answer to my question!
It will help alot now,to be able to explain this all better!
I've been struggling to know how to explain so it makes sense!
Well,been struggling muchly anyway, as we prepare to move,again,...so tired of moving,packing...on and on...
Sorry rabbit-trail digression...Thanx so very much...at least now I will be able to explain...much better!!!
Love from Silverwolf
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
up
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Bejoy, you are such a lovely person! And the fact that you're still around, helping others is awesome.
I'm telling you though, I have got the giggles tonight! The Barney thing! I am in stitches!!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Thanks bejoy, you certainly have a way with words.
I agree with someone else that posted here, reading this makes so much sense. Simple and to the point.
Being able to remember it for when it is needed is another matter.
But I will try.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
up
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Thank you for posting your message. I am a newbie to this forum although I was infected by B.b. 20 years ago, and am now having strange neurological symptoms.
Your description of the illness and the words chosen are important. Not just for yourself, but for all people who are afflicted with this disease. The words you use are precise and informative.
As I am reading more about the silly, yet devastating controversy about Lyme disease, I find that all sides can sometimes use nonspecific terminology that muddies the water of the arguments. The term "chronic" which is often utilized, doesn't really give specific information. When a doctor says "chronic Lyme disease" doesn't exist, what is he/she saying? That late-stage disseminated Lyme disease doesn't exist? Obviously, by lack of diagnosis, we now there are thousands of people suffering with this. This is different than "late-stage disseminated, antibiotic resistant" disease, and it's important to define these as different-both may require different diagnostic and treatment approaches, and the number of people affected in each group will differ.
Thanks again. Your description is crystal clear and simple. I wish you wellness!
Posts: 172 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thanks for your insight. I agree with I'll take the one to two years. I hate to feel like I was so
tough in soul and spirit this would not get me, then have to reset our goals day by day. Keep up the good fight. Prayers for a easy road.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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