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» LymeNet Flash » Questions and Discussion » Medical Questions » 1st LLMD appt

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Author Topic: 1st LLMD appt
kellyjk4
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Member # 19731

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I saw my new LLMD on the 13th.

He's fantastic - so intelligent, funny and genuinely caring. He told me that his wife almost died from lyme disease, and a couple of his kids had it as well.

He is ILADS trained!

Since I've tested positive for lyme, he doesn't need to test for that, but he's very sure that I have babs and bart as well.

First, the nurse went over my history with me and took my vitals.

When the dr came in (very promptly) he sat and talked to me for a long time.

He could see that I wasn't feeling well after a five hour drive, and he was very patient with my poor memory and my discomfort.

After a long talk about my history and symptoms, he gave me a neurological test and a treatment plan.

I'm to get a copy of Singleton's book and look over the symptoms and info. He said not to even try to read the technical stuff because I really can't absorb that right now.

My 19 year old has a few symptoms that could be lyme.

My 7 year old is probably infected, since I was so actively sick when I had him.

He said he doesn't want me to focus on that right now, he wants me to concentrate on getting better.

He ordered some blood tests to check for co-infections.

I go back in one month for a follow up.

I was really impressed and happy, even though I was exhausted by the time I left.

[ 05-15-2009, 03:28 PM: Message edited by: kellyjk4 ]

--------------------
Take care -kelly
---------------

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bettyg
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kelly, so glad you got a WINNER!!! xoxox
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Keebler
Honored Contributor (25K+ posts)
Member # 12673

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Kelly,

Glad to hear you are on track. Now, it may not be an easy race - and it will take some time - but you are on the right avenue and I hope you can enjoy some strolls along the way.


However, you will have to wear long sleeves or carry a parasol as you will need to avoid sun exposure while on doxycycline - even reflected sun or sun through the car window can burn your skin.


So, be aware of that. I hope you have some light cotton long sleeve shirts that are roomy enough for air to circulate. And, really, sun umbrellas are all the rage in some places these days.


Good luck.

-----------

Here is the link to that book your doctor instructed you to get (it is a wonderful reference tool that answers many questions):


This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com


==============


Some of the supplements your doctor recommends - and some sources - are listed here:

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

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008)

Four pages


===========


A few other places to find good quality supplements includes:

www.prohealth.com . . . www.vitacost.com . . . www.needs.com . . . www.vrp.com (& VRP also has an excellent library with great articles).

-

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Jasmin
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I'm happy for you! It's so nice to have a doctor you can put some trust in. [Smile]

And thanks for posting your plan. You answered one of my questions that has been driving me nuts. [Smile]

--------------------
Never doubt in darkness what the daylight proves to you.

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Keebler
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Also, so that you know that pacing yourself is very important - you might consult this when you get to the point where you are ready. I've seen so many here have a good day, run to the sun and then burn and crash - unable to even move for a month. Pacing is everything.


So, during this time, follow your doctors advice and do move some but not too much. My guess is that your kids will keep you moving and involved in the joys of life (even if under a sun umbrella).


Yoga or Tai Chi (or Qi Gong) are also some exercises that nourish rather than deplete during rehabilitation phases.

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


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

Dr. Burrascano'sTreatment Guidelines (2008)

See Pages 30 - 32.

. . .

LYME DISEASE REHABILITATION


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kellyjk4
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I've edited my post to remove the dr initials.

Thanks everyone - I know it won't be easy, but I think I can do this.

--------------------
Take care -kelly
---------------

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kellyjk4
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Okay - sorry, but I took out the treatment details. Anyone with questions, please pm me.

--------------------
Take care -kelly
---------------

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Keebler
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http://www.sungrubbies.com/product_index_html/Sun-protection-umbrella.htm

Sun Protection Umbrellas


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LisaS
Frequent Contributor (1K+ posts)
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Glad to hear you got yourself a great LLMD! I hope he can help you and your family!

--------------------
https://www.facebook.com/profile.php?id=1660435643

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pab
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My son used Durascreen when he was on Doxy. He didn't burn and he has fair skin and red hair. He went to a water park for the afternoon and didn't burn. We applied the lotion every couple of hours.

Someone on Lymenet suggested Durascreen a long time ago and we have used it since that time.

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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Dekrator48
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Kelly,

I am so glad that your first appt went well.

Don't expect too much too soon.

Take it one step at a time and look forward to the future.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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bettyg
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also on protecting your eyes....NOIR sunglasses!


cathy, i was going to post about this, but again, the site doesn't allow me to copy/paste there...

after you return from graduation and REST UP, could you copy any of this or all to your journal to educate others on doxy's effect? thanks my friend! xox


EYE SENSITIVIES & NOIR, no infrared sunglasses info.,

2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on

www.marshallprotocol.com board.
http://www.marshallprotocol.com/forum2/4.html detailed!


I ordered the NOIR sunglasses.
http://www.noir-medical.com/noir_amber.htm

You will need 2% amber and 10% amber ... Style no. 901 and 910.
1-800-521-9746 TOLL- FREE, ONE YEAR GUARANTEE! *************************************

mention you have lyme and marshall protocol, they will give you 10% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!

Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service? I'VE NOT had to return broken/scratched lenses!!

In fact, I have a terrible time where they drop to the floor, and 1 of bows will break off the connecting PLASTIC piece connecting to the lense itself. They just take the info over the phone from YOUR STATE'S REP!

I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be.

Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.

I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views

NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS.


DRUGS ASSOCIATED WITH LIGHT SENSITIVITY by Minoucat
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=048201

Eye Floaters and Spots 9-07
www.allaboutvision.com/conditions/spotsfloats.htm
http://www.eye-floaters.com/floaters-entopticphenomenon.php

There is also something that is called "Scheerer's phenomenon" or "blue field entoptic phenomenon".
This is basically the ability to see white blood cells traveling through in the squiggly capillaries of your retinas... especially when looking at a blue light. (like the sky)
When a leukocyte travels through.. it makes a wiggling motion. The link below is v\ery interesting and even has an impression of this phenomenon. "Scheerer's phenomenon"


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/77825
How lyme impacts the eyes - legit sources from Marnie, 2-22-09

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=504579

*****************


Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=046537#000000

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