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» LymeNet Flash » Questions and Discussion » General Support » It's weird to be me.

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Author Topic: It's weird to be me.
farraday
LymeNet Contributor
Member # 21494

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I tried to explain to my physical therapist how I can understand complex matters but get confused and forget when I try to explain or to recall. I get bits and pieces, want to verbalize my ideas but cannot carry it off. I have really strange (and often funny) dreams that my husband say rate a book.

I finally ended my stammering efforts by blurting out "It's weird to be me". She laughed so hard she had to stop working on me. My son said he thought it was a great philosophic topic that I should write about....he loved my quote.

I am willing to bet some of you can relate!

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
Sadly, what she will probably take away is that the patient is weird, not that this illness complex does a number on people.

I, too, can understand complex thought but cannot communicate effectively, especially if there is the slightest distraction of any kind.

That can be someone just blinking. Seriously, that has take me to the ground more than once. Just someone blinking - or I shifting my gaze.

Please share this article with her so that she gets the WHAT that is COMPLEX (not weird) and that's it is not you -- but what you are experiencing:

---------------------

This author explain a great many things but not JUST about diagnosis - but a better understanding of how lyme (& cos) affect every cell of a body.

This article / sites are nearly required reading to come to even a basic understanding of how lyme changes everything. Once I read these, so much of what I'd be going through for years made sense. And that is a gift to my spirit.

---------------------------------------

The MOST IMPORTANT ARTICLE I've read:

http://cassia.org/essay.htm

When To Suspect Lyme Disease - by John D. Bleiweiss, M.D.

. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . . .

------------

Take note, though, that this is not about the patient but about what these infections DO to a patient. We must, when at all possible try to phrase it with the explanation on the illness, not the patient herself/himself.

I'm not weird -- rather this is a very complex and devastating set of circumstances stemming from "tick borne infections."

I've had to learn to be careful even saying "I'm not . . ." because the human brain does NOT readily interpret the NOT and the other person will immediately put that label to you.

--------------------------------------------

For many with lyme, Vestibular stuff complicates even the most simple task - or just the ability to be. This explains so much:

http://www.vestibular.org/vestibular-disorders/symptoms.php

Vestibular Symptoms

-------------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/113857?#000009

Topic: VESTIBULAR REBAB Therapy, Supposed to be so Brutal?

The VISUAL DYSFUNCTION posts here are very important, as there are some special prism glasses that may help.

THIS can also explain so much. Please share this with your P.T.

-----------------------------

http://www.underourskin.com/

Under Our Skin

- please ask your P.T. to see this documentary. I think it's on HULU.

-----------------------------

Lastly, if your P.T. is not ILADS-educated and Lyme Literate, it's best for you to find one who is.

We should NEVER have to teach them - besides the learning curve is just so very steep.

You deserve a P.T. who KNOWS all about lyme & co.

Also share with them:

---------------

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

------------------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=077325;p=0#000000

Topic: To everyone with CARDIAC symptoms please read!

Includes:

Cardiac explanations & support

Dr. B's exercise and PT Rehab guidelines,

EXERCISE INTOLERANCE discussed

& The article: "when exercise doesn't work out" (and what we can do about that)

MITOCHONDRIA, MYELIN & ADRENAL SUPPORT

-----------------------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115275;p=0

Topic: "post-exertional exacerbation of symptoms"
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[ 04-07-2012, 12:27 PM: Message edited by: Keebler ]

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
You might do better looking for body work outside of the typical P.T. world which can be very stuck in thinking that does not serve a lyme patient.

Acupuncture, Masssage, Feldenkrais . . . this thread can help you find someone who is trained to work with those of more complex matters:

---------------------------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Integrative / Holistic M.D., etc.

Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

Understanding of the importance of addressing the infection(s) fully head-on with specific measures;

Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL links, and

BODY WORK links with safety tailored to lyme patients,

RIFE links,

BIONIC 880 (& PE-1) links, and

LOW HEAT INFRARED SAUNA detail.
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pme
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It's weird to be me too! You are so not alone and with all that encouragement maybe you should write a book. Looking forward to reading it.

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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farraday
LymeNet Contributor
Member # 21494

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I AM writing a book. Tons of disorganized bits and pieces, but my family think it's worth the effort and hopefully they will help me.

When I was in the hospital a lawyer friend of mine called. He said "You MUST write down your life story! If fact, if you don't do it I will!"
I guess I better write it cause I never do trust lawyers! [Big Grin]

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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Carol in PA
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quote:
Originally posted by farraday:

...when I try to explain or to recall. I get bits and pieces, want to verbalize my ideas but cannot carry it off.

.
Oh my yes, I have that.
Sooo annoying and frustrating.

Now I know how stroke patients and other brain injury patients feel.

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pme
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Carol......exactly! I know how ADHD feels and autism too. I get oversti,ulated by so many things.

Farrady if people keep telling you that I am glad you are listening!

--------------------
Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009)
Dx with chronic Lyme May 2011.
LLMD April 2012, Treating with omnicef/zith
Lots of supplements!

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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
By the way, there are some LL doctors who say that most with lyme fall somewhere in the Autism Spectrum disorder range -- and ADD, or ADHD.

Stealth infection, heavy metals, etc. - and stress &/or disorders of the organs of detoxification - or adrenal dysfunction - can explain so much.

And, really, this world has way more stimuli (sensory and environmental) than it did even 20 years ago. It just seems not to be humanly possible to take it all in and still be able to walk and talk.

I also just can't carry off normal conversation or even getting across a clean idea or concept. Now, I'm quite capable of grasping and exploring concepts, just not talking about it.

I can't even tell you how many times I have to postpone my grocery shopper helper because I just can't think to get a concise list together.

It's like a term paper, every 3 - 4 weeks, and I usually have to say, later? Tomorrow? Another day instead? No matter the intentions, my brain seems to not be able to focus on what task I need it to at that time.

And, oh, my that Amazon add to the left is sure rotating way too fast today. Every second, ohhhh.

Hippety, Hoppity.

-------------------------------------------------

Remembering this helps me stay sane - and remain kind to myself:
---------

Bleiweiss:

. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .
-

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WheelWatcher
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I think myself, my husband and my son (2 with confirmed lyme, son with suspected lyme) are all on the autism spectrum! Especially my son and i get sensory overload.

--------------------
IgM ++41, IND 31, 34, 39, 83-93
IgG IND 41

"To the world you may be one person, but to one person you may be the world." - unknown

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