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» LymeNet Flash » Questions and Discussion » General Support » Feeling a bit scared today

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Author Topic: Feeling a bit scared today
Mirface
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Two years ago I was diagnosed with a positive blood test. I was given one month of doxy. I knew before the doctors did what I had.

I figured it out on a depersonalization forum. I was hoping for the Lyme diagnosis. Stupid. I didn't know then what I know now.

For most of the two years I didn't have health insurance at all. Now I do, thanks to my wonderfully patient husband who chose to be around me and love me despite everything.

It's been great getting to the doctor for these symptoms that keep popping up and minimal fee. Granted, these things wont help me rid of Lyme, but we can't afford to go a Lyme doctor because of the out of pocket expense.

I went to my neurologist yesterday who said I had signs of intracranial pressure. Just that phrase alone terrifies me. He also said he's fairly sure I have arthritis in my neck.

I couldn't get my x-rays or mri done though because of the very very very slight chance of pregnancy (irregularity issues and pcos!)...so now I'm waiting for pregnancy blood test results...all the while trying to pretend that I'm not scared at all.

I'm becoming good at hiding my fright and being in denial. But you know, sometimes it's easier.

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Lymetoo
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So you're not going to get treated?? I'd be more than scared!!

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mirface
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Id like to, but I can't afford it.
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17hens
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IMHO, you can't afford not to. Sell something.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Keebler
Honored Contributor (25K+ posts)
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-
Intracranial pressure can be caused by neuroborreliosis (lyme in the brain).

The neurologist may want to do a lumbar puncture (spinal tap) to relieve the pressure. However, if lyme infection is causing the pressure, the infection must be treated. Lumbar puncture would likely not be necessary if you get the infection treated. (And, when done for diagnostics, lumbar puncture is NOT a good test for lyme, ever.)

Arthritis can be caused by borreliosis. That's very common.

Pregnancy with lyme? Your baby would be at extreme risk from the start - from the VERY start.

Somehow, I hope you can get treatment. If not treated, lyme can become disabling and even fatal. That's much more frightening than either of the Micky Mouse diagnoses the neurologist threw at you yesterday. It's far more serious than either of those two words, in the confines that the neurologist has put them in. It's far more complex.

Somehow, I do hope it is possible to get a real expert's opinion. Especially, if you are pregnant, you will need a Lyme Literate MD.
-

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Mirface
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I know the risks and we've gone over this many many times in our heads...
There's no money and we own very little worth selling.

I'm just frustrated and trying not to show it too much to my husband. He says I'm "much braver and stronger" than he is.

I don't really believe that, I think I'm just better at hiding what is bothering me.

We're trying to get me in to see a Lyme literate doctor, but I dont know how long it will take to have the funds.

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BoxerMom
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Mirface - there are many options for treatment while you figure out how to afford an LLMD.

Have you joined a local support group? Someone may have a rife machine you could use. Herbs are also very effective and many are cheap at sites like iherb, vitacost and vitaminshoppe. Even Amazon.

Please begin some type of treatment, as soon as you confirm that you are not pregnant.

You are risking your life if you choose to be strong while letting this disease run its course.

Good luck and be smart!
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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kidsgotlyme
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If I truly had no option to go to a LLMD, then I would at least get on an herb protocol. PLEASE do SOMETHING. You will only get worse as time goes on.

We didn't think that we could afford to take my daughter to a LLMD in the beginning. It's amazing how the money is found when you really need it though. Cut the cable off, sell the second car, anything to cut back.

I had a lady tell me that she would eat beans every day if that's what it took to pay for her daughter's doctor. It's that important.

At least make an appt. It takes a while to get an appt. and by that time you might have the funds. That's what happened in our situation. We were convinced that we wouldn't have the money, and all of the families in our homeschool group GAVE us the money. You never know who will help.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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Keebler
Honored Contributor (25K+ posts)
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-
To compare and contrast the work of authors regarding some of the most common complementary methods.

Please save this to your study file for easier reading and reference. I hope it helps as a introduction to the considerations of complementary approaches. It's important to realize that many also include antibiotics. And those that are based on antibiotics often incorporate supplements for support.

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

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

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

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://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf

LYME DISEASE Considerations in Diagnosis and Management

June 26, 2008 Lyme-Autism Connection Conference

125 pages - Powerpoint presentation

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

By the same author as above, Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

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

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1272566632&sr=1-1

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

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

http://www.klinghardtneurobiology.com/LymeProtocolOct09.pdf
A Treatment Guide: Lyme and other Chronic Infections

by Dietrich Klinghardt, MD, PhD

October 2009 - 87 pages

-----------
http://www.klinghardtneurobiology.com/popups/PC1.html

Online Radio Interview

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

www.lyme-disease-research-database.com/lymenutritionfile1_files/Integrated-Approach-DAN.pdf

HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection

Daniel A. Kinderlehrer, M.D. (2004)

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

http://www.dancingviolets.com/media/pdf/LymeDisease.pdf

Chronic Lyme Disease and Co-infections: Clinical Overview

Rebecca Snow, MS, RH (AHG), CNS, LDN

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

http://www.steveclarknd.com/LymeDisease.htm

Your Path to Wellness - Lyme disease

- by Steve Clark, ND

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

It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.

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

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

http://tinyurl.com/5vnsjg

Book: Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

website: http://planetthrive.com/2009/08/buhner-healing-lyme-program/

-----
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86857

Topic: Buhner Healing Lyme Q & A links

Familiar with Buhner's work:

http://watercourse-way.com/lyme.html

Natural Healing for Lyme Disease

Tim Scott, L.Ac.

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

http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.com

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

RAIN-TREE (Amazon Rain Forest focus)

(800) 780-5902; email: [email protected]

Main site: http://www.rain-tree.com

Best to also read the book: Healing Power of Rainforest Herbs -- by Leslie Taylor, ND - available at their site.

Customer reviews of this book can be read through this link over at Amazon (BOOKS): http://tinyurl.com/ye5bxqw

=========

http://www.rain-tree.com/spiro-extract.htm

SPIRO Extract (from RAIN-TREE)

A synergistic formula of 6 rainforest botanicals which are traditionally used in South America for syphilis (a type of spirochete bacteria) and other bacterial conditions.* This product was featured in an article by the Health Sciences Institute (see page 4).

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

http://www.kroegerherb.com/index.php/products/combinations_product/2446

SPK Formula� (Formerly Spiro Kete�)

Ingredients: Nettle leaf, Yerba santa, Goldenrod, Monolaurin, Tobacco leaf. Other Ingredients: Vegetarian source capsule.

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

www.townsendletter.com/FebMar2006/lyme0206.htm

February/March 2006

BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST

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

Methods mentioned in the article above:

http://www.beatinglymedisease.blogspot.com

http://www.hansacenter.com

Book & Author's Blog: Beating Lyme Disease by David Jernigan

And, the personal link posted above by Gary:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89968

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

COWDEN PROTOCOL combination tinctures are not included here. That's easily found through Google.

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

RIFE MACHINE

http://www.lymebook.com/lyme-disease-rife-machines-bryan-rosner

Book: Lyme Disease and Rife Machines by Bryan Rosner

-----------

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88778

RIFE Support Discussion Thread

-===================

See the "Secondary Porphyria" post first.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA Thread

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

LIVER SUPPORT LINKS are 3/4 of the way down the page here:

Specific for LYME patients - lots of details about ears and what can help:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS

-=======================

incorporating TEASEL root:

An overview of lyme and coinfections from a treating herbalist.

http://tinyurl.com/yh6w892 (Wendy Snow . . .)

Note -- The document is 81 pages long so it may take a couple of minutes to load.

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

ADJUNCT SITES for herbal study:

Not at all about lyme, but a good site for articles about supplements:

www.vrp.com

In their search bar, just pull down from products to articles for access to a fabulous library backed with solid research citations for every article.

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

More specific to herbs and how they work in the body. GREAT BASIC BOOK just not about lyme (other than the page on Sarsaparilla):

The One Earth Herbal Sourcebook (Tillotson, et.al.)

http://oneearthherbs.squarespace.com/one-earth-herbal-sourcebook/

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

www.itmonline.org

ITM - Chinese Medicine research site
-

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kellephant
LymeNet Contributor
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just want to state that not everyone has stuff to sell.... or things like cable and second cars to begin with!

mirface,

i do hope that you can find a way for treatment [Frown] do you think you could take out a loan? i think it'd be worth it if you can find a way!

do you work right now? because if you let this go untreated you WILL get worse, and eventually you won't be able to work anymore... it happened to me... and not being able to work is a lot more expensive in the long run than seeing an LLMD who can at least write you some prescriptions for anti-biotics...

goodluck!

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Keebler
Honored Contributor (25K+ posts)
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-
http://www.lymenet.org/SupportGroups/

Lyme Support Groups

Your local lyme support group can help you find a LLMD. There may be one who is covered by your insurance.

Also post here:
--------------

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum&f=2&submit=Go

Seeking a Doctor
-

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lymednva
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Your local Lyme support group is probably part of NatCapLyme. You can check their website if you are anywhere near DC. www.natcaplyme.org

--------------------
Lymednva

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Joyful
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I'm just sending you a hug, because I know what it's like to be scared.

--------------------
I praise you because I am fearfully and wonderfully made...
Psalm 139:14
http://confessionsofalymie.wordpress.com/

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lou
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I sure hope you are not pregnant if you are not going to be getting treatment. What will you do with a very sick baby?
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kellephant
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lou,

is it even safe for her to get treatment while pregnant even if she could afford it? my guess would be no...

i have a feeling more people would be sympathetic and help her financially for the sake of a sick baby, but hopefully that's not the case.

if it is she'll figure it out then...

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buzzsflybox
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Knowledge is power. Listen to Keebler and the others. I've had and known other Lyme victims and I believe with my whole heart that RIFE machines are nothing but VOODOO machines sold by unscrupulous people selling flse hope to the people who can least afford it. My heart goes out to you. Good luck and trust in God. Buzz

--------------------
5 yr. Vet. of the Lyme war. Helping and sharing are now my only objectives.I have nothing to sell & I no longer interfear with things I cannot control. But, I have learned many good things from my affliction & am a better person for it.

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lou
Frequent Contributor (5K+ posts)
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Yes, it is possible to get treated while pregnant and it reduces the possibility of a bad outcome. But better to not be pregnant and get treated.
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Lymetoo
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buzz.. Rife works.

--------------------
--Lymetutu--
Opinions, not medical advice!

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LightAtTheEnd
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If you are pregnant, you can pass the Lyme to the baby, or Lyme can cause a miscarriage, but if you are getting treated with antibiotics, then the risk to the child is greatly reduced.

If you aren't pregnant, then you're better off to get treated and get well before you get pregnant.

I agree that as difficult as it may be to afford treatment now, not getting treated will only make it much more expensive in the long run. If there is anything you can do or any way to beg or borrow the money, it will go farther and do more good the sooner you get treated.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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sk8ter
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Rife is sometimes all we can handle. Some of us cannot handle reactions to Abxs or even herbs so frequency meds are the only option. Lets all remember what does not work for one may work for another.
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