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» LymeNet Flash » Questions and Discussion » General Support » What to do if family doesn't believe in LYME?

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Author Topic: What to do if family doesn't believe in LYME?
sunshine32274
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I am not sure what to do, my younger brother emailed me and let me know that he doesn't believe in Lyme and even if he did, he wouldn't believe that I have it.
This issue has put seperation between my family. I have been sick for four years and have been receiving treatment for over a year and my family refuses to believe that there is something wrong with me.
I have lost everything bc of Lyme and I have suffered greatly, I don't need my family to attack me all the time and pretend that I am not sick. I am married and my husband told me to just let it go but I can't bc I feel like I have something to prove to them.
I am also scared because my brother knows the name of my LLD and he said that my LLD is a horrible dr who just takes money from people and doesn't make them well. He is so wrong.
What should I do? I emailed him back with my Lyme results but it didn't matter. I told him that I don't want a relationship with him. I don't even see him that much and I have never discussed my Lyme with him.
What do I have to do in order to get my family to believe me? Or should I just move on without my family with hope that someday they too will understand?

Thanks

Posts: 26 | From Michigan | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Let it go. It is impossible to convince others. You need to focus on learning all the things you have to do for self care, etc.

You can send them some links and then say you are not able to discuss this as it's draining but if they want to learn more, they should look over some of the links. Still, discussion can be too exhausting you will keep to lighter matters when talking to them.

I've been dealing with this for years. My otherwise intelligent father died thinking I was a looser. None of my siblings will even talk for a second about this - it's as if I'm living on the moon.

I gave up long ago and it's the only way I could have done it. Some do turn around but most won't. If they do, great. If not, it does not mean they don't love you but they have limited capacity for such complex matters.

Focus on the task at hand.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
FOR EVERYONE

Please copy and paste to your "MEDICAL" FILE - in case of emergency

Here are basic links in case of exposure to tick-borne infections.

If you know of anyone who has TBD (tick-borne disease), it would be so very nice to learn more regarding an infection (or set of infections) that is so very often devastating.

While lyme patients are not looking for sympathy, it means a great deal when loved ones care enough to learn something about the horrific situation faced by those with TBD (tick-borne disease).

Just knowing that others "get it" means a lot on this very rough road. Knowing others care enough to learn means a great deal.

Here are just a few links (really, this is just the beginning of what a TBD patient has to learn).

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

http://www.lymedisease.org/

California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.

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

LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.

LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.

ILADS = International Lyme and Associated Diseases Society

TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.

STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.

Lyme is just one of many chronic stealth infections.

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

www.canlyme.com/seronegreasons.html

(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR

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

www.igenex.com

IGENEX

-----
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know.

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

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

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


www.ilads.org

ILADS - be sure to read all the articles in "Articles and Presentions" Get the DVDs of ILADS of past seminars.

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

http://www.lymediseaseassociation.org/

Lyme Disease ASSOCIATION

- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.

This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.

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

http://cassia.org/checklist.htm

Symptom checklist for lyme.

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

http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

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

http://www.lymeinfo.net/lymefiles.html

LYME DISEASE MEDICAL LITERATURE SUMMARIES

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

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

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

This explains the necessity of an ILADS-educated doctor:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

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

www.jneuroinflammation.com/content/5/1/40

http://www.jneuroinflammation.com/content/5/1/40/abstract

Journal of Neuroinflammation 2008, 5:40

25 September, 2008

Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis

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

A GREAT PLACE TO START with understanding the complexities of finding a doctor:

http://www.underourskin.com

Documentary: UNDER OUR SKIN (you can purchase for $35 at the site or see if you local lyme support group has a copy to lend. Some video outlets and NetFlix, too.)

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

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

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

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

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

Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates

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

Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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I'm really sorry to hear that. I have the same problem with my brother. I actually wrote up a report confirming my case 100% and people still don't believe me.

Here is the paper I wrote:

https://acrobat.com/#d=sbb-EmpQrQTgrPoezLGreg

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Keebler
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Michael,

Wow ! Thanks for doing all that. Hope it's okay to add this, so others can add the full title to add to their own sets of links - and pass it along.

(If this is not okay to either list like this or pass on to others, tell me and I'll delete it. I'd like to add it to my sets of links that I share.)
------------------------------

https://acrobat.com/#d=sbb-EmpQrQTgrPoezLGreg

The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.

- by Michael D. Parent (2010)

- 82 pages

* This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy. The abstracts are available on U.S. Government's Public Medical Database [pubmed.gov]
-

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Paul Mall
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guess Im lucky most of my friends and family see me as the smart one.. so they believe what ever I tell them including the mess about lyme disease

I had a few people who act like they don't believe it so I just tell them the truth and do not push the issue.

if you do not let these people get you upset it will be easier for them to understand they are wrong

if you try and start an argument with them they will never see the light

Paul

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sunshine32274
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Thanks Keebler:-) I copied and pasted it:-)

Thanks so much

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sunshine32274
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Metallic BLue thanks so much I will read all of it, but I glanced over it...awesome...What is even sadder is one of my other brother's has it and suffered a stroke in the beginning before we knew what was wrong with him. And still my family thinks we are Nuts, well my mom doesn't but my other family members joke about in front of us.....
Thanks

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sunshine32274
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Paul, Thanks

I don't argue with them or even discuss Lyme with them. My family is huge and they all live far away so that is the good thing. I too am smart, however after getting out of the ER this week I received this email from my brother and it really upset me:-(
I have lost quite a bit bc of Lyme and I don't like my family thinking I am just making up things, after I have lost everything I have ever cared about.
Thanks

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sunshine32274
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If my dad was still alive, he would probably give them all a piece of his mind, at least I have my husband, brother, sister and mother that understand what I have been through.
I don't need the other brother's, but it does hurt.

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sunshine32274
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Metallic BLue thanks so much I will read all of it, but I glanced over it...awesome...What is even sadder is one of my other brother's has it and suffered a stroke in the beginning before we knew what was wrong with him. And still my family thinks we are Nuts, well my mom doesn't but my other family members joke about in front of us.....
Thanks

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Keebler
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I sure hope they don't have Verizon. But it will be all over the media soon.

on Verizon's news page is a very bad article about lyme:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/99122

Topic: lyme "scheme"
-

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METALLlC BLUE
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quote:
Originally posted by Keebler:
-
Michael,

Wow ! Thanks for doing all that. Hope it's okay to add this, so others can add the full title to add to their own sets of links - and pass it along.

(If this is not okay to either list like this or pass on to others, tell me and I'll delete it. I'd like to add it to my sets of links that I share.)

Of course. I released it publicly a couple weeks ago. Everyone is welcome to us it, it's not copy righted.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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METALLlC BLUE
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quote:
Originally posted by sunshine32274:
Metallic BLue thanks so much I will read all of it, but I glanced over it...awesome...What is even sadder is one of my other brother's has it and suffered a stroke in the beginning before we knew what was wrong with him. And still my family thinks we are Nuts, well my mom doesn't but my other family members joke about in front of us.....
Thanks

The first three pages are the critical summary. The rest are the abstracts that cover the issue.

One of the studies was actually about Lyme Disease causing a stroke. FYI.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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LightAtTheEnd
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My family came around when they watched the DVD "Under Our Skin" with me, www.underourskin.com. After that they hugged me, gave me money for meds, and said they were glad I persisted in insisting I had Lyme and kept going until I found an LLMD. They also read some or all of Cure Unknown by Pamela Weintraub and understood a lot better.

However, my family is very close and they have always been extremely supportive of me. Even when they didn't understand or believe about Lyme, they knew something was wrong and I was sick, and needed help, and they were there for me. If you had a shaky or less than supportive relationship before Lyme, you probably can't fix it while you have Lyme.

They might come around when you get well, or when they or one of their kids gets it, and apologize to you for how they treated you all those years.

Meanwhile, if they are determined to knock you down, then you can't afford to engage with them over that issue. Either cut them out of your life or make the Lyme topic off limits.

I am sorry to hear that your family is not supportive.

--------------------
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.

Posts: 756 | From Inside the tunnel | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
sunshine32274
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No I am extremely close to my six siblings, however most of them live out of state.

I decided a long time ago not to discuss Lyme with most of them.

I was in the hospital four days before my wedding and they were all home and they knew something was wrong, they just don't understand.

I am hoping they come around.

Thanks

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LSG Scott
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Sunshine

you might want to take me up on this offer, in this link

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/25461

just let me know
Scott

--------------------
LSG Scott

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METALLlC BLUE
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Personally, I've made a decision that those who couldn't be there for me while sick won't be allowed to be around me when I'm healthy.

It's really that simple. Relationships among humans are meant to ensure the survival of the collective. If the collective -- or individuals from it -- abandon me, then they don't have my best interest in heart.

Funny way of putting it, but it's true.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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