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» LymeNet Flash » Questions and Discussion » Medical Questions » sick for 11yrs... just learned its lyme!

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Author Topic: sick for 11yrs... just learned its lyme!
sharkiesparx
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I am at the new beginning of what has already been a very hard, confusing, depressing, lonely, abusive, life altering experience.

I got bit by a tick when i was 18 while camping with a friend. I went to the doctor 2 days later because it looked so bad and i was concerned about lyme disease (not knowing anything about it really, i just heard that dogs got lyme from ticks...)

Doctor: 'lyme doesnt exist in humans so you can go home'

11 years later....

Married, 3 kids under 9, and just barely learning to get over the 'im crazy, lazy, selfish, psychotic, worthless, nothing-really-wrong-with-me self loathing attitude' which i have had to endure for so long.

I need to conquer this! I dont know of any llmd's in my area... but i have such a bad taste in my mouth from doctors who dont even care about me at all that i am genuinely petrified to expect treatment that will do anything other than strip my cash cow, and strip my self worth.

Anyone out there with a simular story?
Has anyone else had sucess treating themselves?
What natural remedies have you seen the best results from?

Im so excited to connect with people who share the same experiences and symptoms as this has been the lonliest solitary confined series of years [shake] ......ever

Posts: 1 | From willamette valley, oregon | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
Lisa Lyme
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You are NOT alone! Many of us have been where you are and are getting better a little at a time.

We can help!

--------------------
Take It Easy, Peace

Posts: 59 | From Old Lyme | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Doctor: 'lyme doesnt exist in humans so you can go home'

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That has got to be the worst Dr response I've heard in 13 yrs!!! I'm so sorry you are in Oregon where lyme does not exist!!! UGH!!

Many here were diagnosed 10, 20, 30, 40 yrs after their tick bites.. so you are in good company here!

You CAN get well!! Go here to find a Dr in OR .. hope that is possible...


http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

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

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OtterJ
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sharklesparx, there is a good lyme support group that meets in Corvallis and two good doctors who

are lyme literate in the Portland area. I was bitten in Portland in 2006 I was told that there

was no lyme in Oregon. Ha, ha. I go to the support group in Portland and find it very

informative. In our support group it is apparent that some people respond well to antibiotic

therapy and some people respond to herbal treatment and some do both and do well. Every

body seems to be different and differently affected by this. You may also have co-infections

like bartonella and/or babesia or others and you would do well to consult with a lyme literate

naturopath or doctor. I will PM you with info

Posts: 481 | From Oregon | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
Sammi
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I am sorry you have suffered for so long, but it is good you have an answer now.

I agree with the others about seeing a Lyme knowledgeable doctor. You should have your children evaluated also because Lyme can be passed through pregnancy and breastfeeding.

Good help is available, and you are not alone.

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Keebler
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As there are zero LLMDs in Oregon and it's a very hostile state regarding lyme, medically speaking . . .

I wonder if you have a LLMD from out of state - or a LL ND. There are a few ILADS educated LL NDs in Oregon.

LL = lyme literate

ND = Naturopathic doctor

Do you need detail about all that?

Do you need to find a lyme support group? There are a couple in the Willamette Valley, of course as that runs the full lenght of the state, there may or may not be one near you.


Not sure how you were diagnosed or by whom - but you also need to be assessed for OTHER tick-borne infections.

Best of luck to you. I know being in Oregon it's beyond even extremely difficult but do connect with a support group to help guide you next move.
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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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You asked if the medical malpractice and medical abuse has been experienced by others. Yes. For hundreds, even thousands around the U.S. Some experiences of others in Oregon:

http://lyme.kaiserpapers.org/oregon.html

Lyme Disease in Oregon

The Kaiser Papers not by or from Kaiser Insurance but about how they deal with lyme inquiries

Also gives background regarding lack of lyme assessment / treatment in general, regardless of ones insurance coverage.

OREGON SUPPORT GROUPS listed at BOTTOM OF PAGE

(There are zero LLMDs in Oregon. Yet, there are several ILADS-educated LL NDs (naturopathic doctors in Oregon.

There are both some LLMDs & LL NDs in California & in Washington state.) State borders make a world of difference.


http://lyme.kaiserpapers.org/washington.html

Lyme Disease in Washington

Scroll down for WASHINGTON STATE SUPPORT GROUPS at BOTTOM OF PAGE

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

On-line support (and to see what others' suggest) through www.LymeDisease.org

http://www.lymedisease.org/resources/referrals.html

Doctor Referrals

http://www.lymedisease.org/resources/support.html

On-line support for those in CALIFORNIA above, other states below.

http://health.groups.yahoo.com/group/YOURSTATENAMELyme

Just zipper in the state name where you seek a LL doctor. To join for discussion, best to join in your own state.
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[ 04-05-2013, 05:51 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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When considering herbal / nutritional / adjunct methods:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present.

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

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

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. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)

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 from all corners of medicine;

knowing which supplements have direct impact, which are only support and which are both.

You can compare and contrast many approaches.

BASIC HERBAL EDUCATIONAL & SAFETY links,

BODY WORK links with safety tailored to lyme patients,

LOW HEAT INFRARED SAUNA detail,

BIONIC 880 (& PE-1) links, and

RIFE links.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What ILADS is

& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both)
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Keebler
Honored Contributor (25K+ posts)
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Pulling out of the LL ND thread, (IMO) the top three choices for anyone on their own (still BEST with LL ND guidance):


http://tinyurl.com/5drx94

Book: Lyme Disease and Modern Chinese Medicine -

- by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org

Passwords: "clinic" and then "clinic" again

or call for help: Hepapro - www.hepapro.com

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

http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630/ref=sr_1_1?s=books&ie=UTF8&qid=1361216068&sr=1-1&keywords=Healing+Lyme%3A+Natural+Healing+And+P revention+of+Lyme+Borreliosis+And+Its+Coinfections

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections

- by Stephen Harrod Buhner (2005)


http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083/ref=sr_1_1?s=books&ie=UTF8&qid=1361214365&sr=1-1&keywords=Healing+Lyme+Disease+Coinfections%3A+C omplementary+and+Holistic+Treatments+for+Bartonella+and+Mycoplasma+%5BPaperback%5D

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma [Paperback]

Stephen Harrod Buhner

Pre-order now. This title will be released on April 29, 2013.

$11.33 & eligible for FREE Super Saver Shipping on orders over $25.


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

Forum: http://planetthrive.com/category/experts/buhner/


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/115218

(To address Babesia) CRYPTOLEPIS sanguinolenta & SIDA ACUTA LINKS

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

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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I know this is a lot to take in at once, so you may want to just save the thread link -- or copy and paste the posts for your STUDY PAGE.

I want to be sure you have the basics of what you need to get started. Within the diagnosis thread you will find Burrascano's treatment guidelines. Be sure to see that.

Also, below will be a link regarding why it's so important to avoid processed foods. Many will make lyme symptoms so much worse, so much.

Also in the "diagnosing" set, you will find some other articles that explain symptoms just so you can have a better understanding of what you are going through - and acceptance of yourself during this journey.
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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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I suggest that you NOT try to find a MD of any kind in Oregon to treat you - unless - you FIRST get suggestions from someone in the area lyme support groups.

If you see a doctor for other reasons, I would keep lyme to yourself. Once it's noted in your medical chart, you may never receive proper respect again from any doctor. That's been the experience of most with lyme in Oregon.

Oregon MDs are strickly prohibited by the Oregon Medical Board from acknowledging and/or treating lyme. Occassionally, one might treat for a few days with just one Rx but that's about the extent of it. Even so, many with a bulls eye rash have been turned away with the state mantra ringing in their ears

"there is no lyme in Oregon" (I'm sure you've heard that before, sadly).

There may be some slight exceptions but you will never convince any doctor in Oregon to learn about lyme. There are couple who might like to but are understandably afraid of loosing their license. It has happened here before.

Only trust those whose MD names you may get from a support group. But also know that even if you find a lyme "friendly" doctor, they will not offer full treatment. They may be able to offer some basic lab monitoring or otherwise assist you with non-lyme issues (while not kicking you out for mentioning the "L" word, as many do).

If you find such a doctor, keep their identity very quiet. Do not talk about them in public, other than in the lyme support groups. "Flying under the radar" is important.

A LL ND (naturopathic doctor), will be able to treat, however, rarely is there any insurance coverage (though there may be for a diagnosis if "pain").

NDs are licensed under a different organization. In Oregon, NDs can prescribe Rx as well as support supplements.

But not every ND is LL. Only a few. And it really matters.

Still many lyme patients go out of state for treatment or do what they can on their own. I know that all too well. So hold on. This can get better. Really.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


Why a too often used approached by those who are not LL, using just one antibiotic (often just doxy) can make lyme become chronic:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme


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Re: Food Additives

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=029690;p=0

Excitotoxins; MSG; Aspartame; & "Natural" Flavors;

GMO foods that destroy the GI Tract; Gluten; Dairy.
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Lymetoo
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Thanks, Otter!! Good to know!! [Smile]

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

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Keebler
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Otter, yes, glad to see you PMed to sharkiesparx a couple Portland area LL NDs contact information. I'm in Portland, too, but don't have energy to PM or privately communicate.

I'm also glad you find the Portland lyme support group to be helpful. I've never been able to go but keep in close contact with the leader and am impressed with the range of topics and interests.

sharkiesparx, if you are not near either Portland or Corvallis, there is also another group further south in the W. Valley. So, you should have a group within a 2 hour drive.

Even if the MDs are dismissive, there are many other good people who have stepped up and become educated about tick-borne infections. They will be glad to help shine some light on your path. Many have gotten better, too.

Best of luck to you. Take care and be sure to breathe.
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sickofsick
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Your story is everyone's story! It's sad that we don't get a lot of support from the medical community.

Just wanted to lend support and wish you well in your healing.

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Keebler
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Others have said it above but want to also stress that since you were ill (likely with lyme) prior to be beoming a parent (whether male or female), lyme can be passed to offspring.

This often manifests in attention & sensitivity issues (and so much more), so be aware. I hope you find a good LL ND in state (even if you later also go to a LL MD out of state).

A LL ND will also be able to help determine if your children might need to be assessed and, if so, what options they may have.

While all this can seem "heavy" - knowledge is power. May the "force" be with you! And may your heart and soul feel lighter knowing that you have unlocked one very important key.
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Robin123
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Sorry you had to suffer so long, and hope you will be able to connect with a good treater.

Treatment for Lyme happens in three categories: kill/deter the organisms, detox, and fortify.

Also see if there are any other infections involved, like babesia, bartonella and ehrlichia - you can google their symptoms and see whether you think you match any, and if you do, you can test for them, and treat them too.

You can use the Search function at the top of the page here to type in any word or phrase and archived thread will come up that you can read through. I call it going to Lyme school. Keep in mind we're all different in what we respond to.

Lymetoo brought up an old thread in General Support called the Official Alligator Pit, if you feel like dumping any misinformed doctor stories in it...

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