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» LymeNet Flash » Questions and Discussion » General Support » Told to Leave-I'll Be Back

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Author Topic: Told to Leave-I'll Be Back
Consuelachacha
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I was just dx with Lyme June 1. Started Doxy 100mg 2x day for 4 weeks. Almost done. I feel HORRIBLE in every way you have probably read about.

I have called the Dr. that dx me and she said my symptoms I am having is not from the Lyme.

Stiff neck, cannot remember, lose my balance, angry, cry, you all know what I'm talking about.

Also, no refill for the Doxy. So I feel the 4 weeks of hell I have gone through have been for nothing because I probably started killing the bug and now I am going to go back to nothing.

I have contacted at least 5 Drs. Most have not returned my calls.

My Psychiatrist DID call me back yesterday and said "Is Connie sending herself into a tizzy learning too much about Lyme"? I tend to focus on one thing sometimes and learn all I can learn about it especially SOMETHING THAT MAY KILL ME!!!!!

I told him I have learned so much about it and the 1,000's of people on Lymenet and all the things I feel I need to do, but NO ONE WILL HELP ME!!

He made me promise to stay off Lymenet for a few days. (Well here I am).

Maybe I am infatuated (sp?) with this but if I don't learn, no one is going to do it for me.

I am going to take his advice and try to take a couple days break.

Love You All!!!

Connie

--------------------
Sick and Tired of Being Sick and Tired!!

Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
onbam
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We all hear that--it's the official "party line" that doctors are told to tell us in med school. This info is coming from a psychiatrist I know.


The test are horibly inaccurate; there is thus no way to rule out Lyme. . Read

lyme-info.net
lymecryme.com
undertheeightball.com
underourskin.com
and the links at the bottom of my post.

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Geneal
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Just out of morbid curiosity, what did the doc say you have now?

Did you have a Western Blot done at any time,

Or were you diagnosed by symptoms alone?

Hang in there.

Hugs,

Geneal

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Pinelady
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You should have swapped promises.

Made them learn all about the organism you are dealing with...

They have no idea...

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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massman
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They do get annoyed when they realize lots of info can be found. So they tell you not to read it and used to say it was mostly false.

As above, your shrink should spend 3 days here to educate himself.

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Keebler
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-
First: 100mg 2x day is not enough.

Second: that Psychiatrist's statement was very condescending. And that's not the attitude any doctor should be taking. He's just put you in the "bad child" room. And he won. He has power over you now and you feel awful about yourself, questioning your own ability to make a reasonable decision.

So, they won. They want ignorant patients, you know. I'm not calling you names but ignorant is the only term I can think of when someone just doesn't know. You've shown that you have a mind and want to learn and they want to reign you back in. They want you to be ignorant. It pays their bills.

I'm trained in journalism. I used to teach journalism and research methods. So, even before the web, I loved to learn what I could about lots of things but I left medical stuff to doctors. Then, I got deathly ill and doctor after doctor screwed up big time.

Then I learned that I needed to apply the same journalistic standards to my health as I would to any project. Most people put more research into buying an appliance than in finding the right doctor for their needs.

RESEARCH. LEARN. ASK QUESTIONS. And one need not even have been to college. Even middle school kids are taught to question, to explore, to go beyond. No one can do a project with just one reference, or even two.

We have to treat health challenges as least as seriously and learn as if it were our science project for the school science fair.

And fire ignorant doctors. Stop paying them for their failure. Think of this as a BUSINESS transaction. Drop all the parent-child or male-female roles that can trap us so often. You are looking for a certain king of expert. Hold your held up high. You are not to be scolded for wanting to learn more.

Most times, if I showed any effort in learning, former doctors would label me hypochondriac. Some would toss any literature in the trash. Some refused to even take it from my hands. Others just put it in my file, never even looking at it.

But, sometimes, I had a doctor who would read and discuss an article, a doctor who would help - at least to some degree.

A good doctor is never threatened by any patient who makes an effort to become educated about their body. A good doctor would help guide you.

A good doctor also knows WAY more from the get-go so you don't have to research to save your life and you can spend more time on just getting better with self-care, etc.

You can stay away if it's truly to clear your head. And, you can choose other places to learn, of course.

While this phrase is a bit clich , it never really looses it message:

KNOWLEDGE IS POWER. If something were wrong with your car, you'd learn more. Why not when something is wrong with your body.

You don't need to stop learning but you should not have to figure this all out alone. You just FIRST need to find an ILADS-educated Lyme Literate MD. (LLMD).

You've been diagnosed with lyme. 100mg 2x day of a single antibiotic is NOT enough and four weeks' time is not enough.

Find a LLMD. Then you can learn what you need for self-care, etc. Then, selectively, you can pace yourself with learning - or creating your healing environment and schedule.

You won't find a good LLMD by begging "regular" doctors to recognize your situation. Most are trained to turn away (after taking your money for nothing but putting you down).

You'll need find a LLMD who is already established, experienced and educated. One who has successfully treated thousands of patients like you. Treatment is not easy, at all. But neither is being sick forever. There are some options for an individualized path but expert guidance is so vital.

Once you decide to find a good LLMD - and that task is accomplished - then you can take an "information vacation" from many aspects of lyme education. Then you can learn things like Tai Chi to help with healing.

Good luck.
-

[ 06-26-2010, 02:59 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

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

This explains WHY you need an ILADS 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.ilads.org

ILADS -

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

http://cassia.org/checklist.htm

Symptom checklist for lyme.

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

http://cassia.org/essay.htm

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

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

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

www.lymenet.org/SupportGroups/UnitedStates

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

Post in: SEEKING A DOCTOR - a LLMD

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2
-

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sparkle7
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Back in the 1960's people used to have a saying...

"Question Authority"

I don't think enough people are doing that these days. If we are going to survive, we need to start asking some questions. With cancer, it's the people who fight that survive.

Studying & learning all you can will help you survive. People here also can offer emotional support which is really important with Lyme & the associated illnesses. Often, we are ridiculed & isolated due to this illness.

I hope you defy your doctors & come back soon. Do they really have your best interest in mind?

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WildCondor
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It does not sound like you have a good doctor.
Your Doxy dose is too low for treating Lyme disease AND no doctor should ever tell a patient to stop educating themselves! Question Authority is exactly right!!

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fatherguido
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Question authority....Do it.

When I first started getting sick, I trusted doctors blindly to do the right things to find out what was wrong because the symptoms were getting worse.

After 13 appointments with various doctors, a few things were ruled out but could not find the cause.

My last PCP referral was to a Pain Specialist. The PCP said I need to live with this pain. His advice angered me and I started doing my own research.

This is where lymenet was found and I got on the right track. I just wish I had found this site before my Neuro gave me the steroids. Jerk.

Question authority....

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LightAtTheEnd
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"learning too much about Lyme"

How can you know "too much" about the disease that is seriously messing up your life? Especially when the doctors don't seem to know anything helpful?

"sending herself into a tizzy"

When I started reading books and medical articles and Lyme patient bulletin boards, a relative accused me of "making myself sick" by worrying so much.

I explained that first I got sick, and THEN I got worried about it.

You are not causing your own problem by making your best effort to solve it (and no thanks to your unhelpful doctors).

It makes me so angry the way far too many doctors abuse people.

Also, think about it. If you take your car to a mechanic, who can't figure out what's wrong, the mechanic says, "Sorry, I don't know" and doesn't charge you.

The doctor scratches his or her head and says, "Hmmm, it's a mystery" or "There's no help for you" and then charges you anyway. And THEN says come back in 2 weeks if you're still not better (and pay again).

These people are supposed to work for us.

--------------------
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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mjbucuk
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were you tested for any coinfections by the way?
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Remember to Smile
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quote:
Originally posted by Consuelachacha:
I was just dx with Lyme June 1...
[snip]
Stiff neck, cannot remember, lose my balance, angry, cry, you all know what I'm talking about.

Also, no refill for the Doxy. So I feel the 4 weeks of hell I have gone through have been for nothing because I probably started killing the bug and now I am going to go back to nothing.
[snip]
I tend to focus on one thing sometimes and learn all I can learn about it especially SOMETHING THAT MAY KILL ME!!!!!

I told him I have learned so much about it and the 1,000's of people on Lymenet and all the things I feel I need to do, but NO ONE WILL HELP ME!!
[snip]
Love You All!!!
Connie

Dear Connie,
We love you, too! [kiss] (esp me!)

We pray you WILL continue to seek support and information about Lyme disease in the way you chose that will best support your return to health and happiness.

You know I'm not a healthcare professional, but it's clear to all here that your psychiatrist is a verbally abusive, condescending, control freak. [shake] Pinelady's idea about the swap promise was great, but by reading all the posts in your thread, you'll probably exercise your wise judgement and simply never pay him another penny.

Our LLMDs deserve payment because they render a useful service: appropriate & effective medical treatment for relief of disabling symptoms.

We'd love to help you find a LLMD who takes Medicare so you can meet a caring doctor instead of all the arrogant ducks who've been mistreating you for decades now.
[group hug]
Financial help available thru churches, other charities, and government programs. Someone could post a link for you of the threads on frugal Lyme tx.

Lyme disease is not a belief, it's caused by a bacteria. In the past few weeks, you've become radically more educated about the fastest-growing infectious disease in the US, and all the humans you see around you daily in your region are sadly living under the big IDSA rock of LIES.

On top of your widespread, disabling Lyme neuroborreliosis symptoms, another very difficult challenge at this early stage is to deal with the HUGE ramifications of the total loss of virtually your entire support system of friends & family because so very few are truly Lyme-aware (i.e. - have read most everything on the ILADS website and know how to put their hands on their highlighted copy of Burrascano's guidelines!)

A competent, LL social worker or psychiatrist would know to help you where you are in your stage(s) of grief. You have MUCH to grieve now, but you ought not be saddled with ANOTHER loss from that nasty psychiatrist you just fired (I hope!)

You've lost many aspects of your health, your memory, ability to drive & shop like you used to, your ability to talk with your conventional Mom about the biggest challenge of your life: Beating Lyme!

And of course there's a myriad of disturbing, scary symptoms from the Lyme neuroborreliosis that's hampered you for years...

So let us welcome you back here so in a few months you can tell us about the symptoms that are improving!

1) Don't think that a short course of low-dose Doxy will impact your chance for recovery. From your symptoms, you've been infected for many years, and our LLMDs see plenty of that in America. You can still achieve a pleasant, long-term remission!

2) Take a break from idiots, not sound science.

3) When you chose to work on your ongoing Lyme disease research, just pace yourself so you'll have the rest you need to support all of your body systems.

4) Select just one or two of your relatives, friends or neighbors to try to bring into the circle of care with you. Most will not, and you can't personally fight all the $$$$ GlaxoSmithKlineBeecham spends on drug advertising. Instead, pray for the angels, saints, and souls of all in the Universe to give you strength and lead you to the most healing resources.

I took my own advice. After more than two months of carefully timing pleas to several relatives, i think my out-of-state sister-in-law may become the first of all my relatives to watch Under Our Skin. After she does, maybe one blood relative, my brother, may get a glimpse of my life as a disabled single woman.

On a big positive note, I feel God led me to the most ideal caregiver! After calling & calling numerous local friends (not incessantly, just paced and dispersed over the past 6 months), i just engaged a 16 yo to become my PT personal assistant/caregiver/home health aide/driver this summer. She's an exceptionally well-mannered, sweet, intelligent teen whom I've known since she was a tot. I offered her $10 hour and she countered $8 was better.

But there's more: Her mother has been suffering & is quite disable from "MS" and her best friend's parents both have LD. They are all pleased that my caregiver can learn thru me how their families can take better care of themselves. They were very heartened to accept a copy of Burrascano's guidelines, so suddenly i have three other people i can see in person who empathize with my situation! [bow]

Good things come to those who wait, and post here to learn more while they wait!

Lookin' forward to the return of your precious prescence. [hi]
Love,
Smile

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Robin123
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Connie - you need to see a Lyme doctor. When you come back, we can help you locate one.
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Consuelachacha
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Still here (Shhhh!)

I'm still here. Cannot stay away.

I actually love my psychiatrist. He just knows me very well and my OCD can really come into play here. I do need to "pace" myself.

I am going to continue to learn. Call some Dr.s Monday. Possibly go back to the Rheum. that dx. me just to give a piece of my mind (can't afford to give much, LOL).

Then she gave me two Neurologists to call. I did, they said they couldn't help me. They would only re-confirm my Lyme and could do nothing else for me.

I am going to request they run an MRI on my brain and an EEG. If they won't, I'll find someone that will.

Thank you all for your posts.

Still pushin' on in St. Louis.

--------------------
Sick and Tired of Being Sick and Tired!!

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Consuelachacha
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mjbucuk;

Your PM is full;

Hi mjbucuk;

As you can see I have been unable to "stay away"

You ask if I was tested for any "co-infections". I have pages and pages of tests she ran. I assume they would be considered co-infections??

Researching them MYSELF I learned Epstein Barr (which I was extremely high for) was mono. She didn't even talk about that.

Also, Parvo Virus B19??? I was extremely high. She didn't mention that.

All she told me was my Lupus was negative. (That is what I went to her for. I felt like my Lupus was coming out of remission). HOWEVER, I tested positive for late stage Lyme Disease and they needed to see me right away. I went that afternoon.

All she did was put me on 100 mg Doxy 2 x day for 4 weeks. I am almost finished with that and don't know what to do now. I have learned first of all that is not near enough abx AND it could take 1-5 years of treatment.

I hope I answered your question. Over the past 10 years I have been dx. with Lupus, Fibromyalgia, IBS, Spastic Colon, Diverticulosis (sp?), just to name a few.

I could have had Lyme this whole time but no one found it??

--------------------
Sick and Tired of Being Sick and Tired!!

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Keebler
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-
You said "I assume they would be considered co-infections??"

Don't assume ANYTHING. They would have told you had they done that. A good doctor would have discussed it with you.

Yes, you could have had lyme this whole time. But rather than spending energy on that - right now, present time - you have a situation. You were recently diagnosed, given too little Rx for too short a time, still having classic symptoms and you are planning to go back to the same doctors.

I don't know how much clearer we can be: It's just wasting your time and energy going back to the same doctors.

It is a waste of time asking for MRI and EEG from those who are NOT lyme literate. Just wait and see what the LLMD has to say.

If you've read anything, PLEASE see that we all are telling you to drop the idiot doctors. If you go back to "give them a piece of your mind" you will be labeled nuts, angry and potentially dangerous in your medical file and that will be there forever, not serving you well.

See a LLMD. If you have OCD, that can be from lyme but you must focus on getting the care you need and that won't happen from the same doctors that slammed the door in your face.

It's not just about pacing yourself but not WASTING TIME on the doctors ignorant to lyme. THAT is the message.

There is a good LLMD a couple hours from you. Have you tried scheduling? Is there some reason this is not happening? Funds? Transport? You still think the same doctors as before will help if you "give them a piece of your mind"?

I just don't understand why you are heading back to the barn for a beating. If you just can't get to a LLMD for some reason, there are other ways to try to work with this but it is absolutely futile to think you will get anywhere asking the same old doctors who have sent you away to do an MRI and EEG and that magic will happen. It won't.

However, you need to maintain some sort of neutral stance here as if the LLMD suggests you need those tests, you local doctors are the ones who will need to order them so your insurance covers testing. Don't burn your bridges. This is a business arrangement and you may need them to provide a service in the future.

When you get better, you will be in a better position to go back over what did and didn't work. For now, you need to be very selective in the the professionals you "hire" and for exactly what specific tasks each one can serve you. That's not phrased just right but just keep your cool so you can obtain the care you need.

Think ahead so that you still have a chance of cooperation if there are some ways a non-LL can help with what a LLMD suggests.
-

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onbam
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Lupus is very often misdiagnosed Lyme. Really, a psychiatrist will not solve your problems here. We've pretty much all been fooled into going down that road.

Doxy treatment needs to be to twice that dose to have ANY effect, and needs to continue for 3 months after your symptoms clear.

Search for the burrascano guidelines.

Good luck!

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Lymetoo
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quote:
Originally posted by Consuelachacha:

I could have had Lyme this whole time but no one found it??

ABSOLUTELY. Happens all the time.. did to me!

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

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Remember to Smile
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Dear C. Welcome back! We're ready to help you HEAL.

It's rare to see Keebler get so forceful in a post. I'm not a mind reader, but i'll offer my thoughts on why ALL the posters here are saying the same thing:

* You have Lyme neuroborreliosis. The ducks you've paid haven't treated your LBb nor your viral infections, and no one thought to run labs for Bart, Babs, and Ehrl.

* You must get an appt with a LLMD asap in order to heal from your parasites.

* If you go back to your old doctors, you will just worsen. Now that you are WAY more educated than they about this serious infectious disease, the stress in dealing with them will be nearly unbearable. Hard to hold your tongue while being mistreated. Not conducive to healing.

* Since your psychiatrist never called you this weekend to thank you for opening his eyes to the error of his ways (many take on some OCD characteristics to make up for white matter damaged by LBb), please drop him permanently. You do not deserve to be abused, and you should not pay him to remain ignorant and rude.

* Your rheumatologist was negligent. There are anti-viral treatments. Would you return to a mechanic to pay him more after he forgot even mention two hazardous conditions he saw on your car?

We'd like to help you become a healthy refuge from the Lyme Wars. Don't keep paying the drug dealers.

Please watch "Under Our Skin" and read "Cure Unknown" asap! Or do a search on "Lyme Wars" so you can get back on track.

Dear C, if you'd like help with finding a LLMD who takes Medicaid, getting transport, finding a nice place to stay for an out-of-town appt, we can work that out. You need to focus on what's important now: Your life.

Also keep in mind that if one member of a household has been diagnosed, it is advisable for all members of the household to be evaluated for LD & co's. If you lose sight of your need for an LLMD, it'll just take longer to get out of the brain fog, and you may become MUCH sicker.

Sorry. 'nuf said.

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Lymetoo
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***Moving to General Support***

Please continue adding ideas if you have any!!

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

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Consuelachacha
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Well;

I don't know what to say. Keebler pretty much jumped my $%it. The tests I was positive for on the series of test Rheum. ran, I thought (assume was a bad word) had to do with the Lyme. Guess not. THAT is what I wanted to discuss with her. (Not really "Give her a piece of my mind". I want to know why she didn't tell me about the OTHER tests that were positive including the Lyme and what should be done about those.

As far as my Lupus, the ANA test HAD to be positive if my Lupus was out of remission. It was negative.

The neurologists was something suggested to me and supported by Remember to Smile. This could be my opportunity to have someone willing to run an MRI to see how much plaque is on my brain. And EEG to see the Grey Matter and White Matter Damage.

I could use ALL of this info for when I do find an LLMD. I am still waiting for Dr. C in MO to call me back. I left message Monday. I will call again tomorrow.

The more tests I can have run and results to give to an LLMD, the more beneficial my first visit would be.

Perhaps I'm on the wrong track? I'm not returning to same Dr.s. I was going to try the Neuro to get any info I could from him.

If I sit here and wait for an LLMD to fall in my lap, I feel like I'm doing nothing to help myself.

I'm rambling again. Getting to late in the day to try to make sense.

Thanks to all of you for your support and wonderful advice.

Connie

--------------------
Sick and Tired of Being Sick and Tired!!

Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Tricky Tickey
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Oh my gosh, all these posts sound exactly like what I've been feeling. Found out I had positive antibody on June 16 & it's been a whirlwind since then. Read read read......I refuse to let someone else decide my fate, some mere human. I often wonder if I'm reading too much. I get very upset & worried. However, it makes me want to be a rebel for Lyme awareness. I mean, heck, I'm ready to speak up! If it wasn't for this forum, I'd be sitting back twiddling my thumbs waiting for that pompous ID doc's appointment....which is, by the way, Sept. 7. Ha...I already got a LLMD appt for July 6. They did not hesitate to see me. That goes to show you that everything our brothers & sisters here on the forums tell us is true about how we are treated by MD's. I'm shocked & appalled at what the psychitrist told you. You need to tell him/her how it made you feel. You have a right. Don't stop fighting.

--------------------
Early Disseminated LD- 2010.
Currently doing acupuncture and yoga.
Negative Igenex (IND & Pos Bands)
ISSUES AFTER: Tendonitis, letter reversal, Low immune system.
PREVENTION:SaltC,Iodine,Humaworm,
Chiropractic.

Posts: 1013 | From In a van down by the river. | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Keebler
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-
You had not mentioned previously that you decided to see a lyme specialist (LLMD) or that you had a call into one yet. It sounded like you decided to go back to the same doctors who let you down.

I see, now, that you said you called 5 other doctors. I misinterpreted that to sound like just regular doctors, others out of the phone book but not a lyme specialist.

I interpreted "give them a piece of my mind" as meaning to confront them in hope of getting treatment for lyme. Many have tried that. That never works. Trust us. We are trying to save you the pain and humiliation - and time & energy wasted - that many of us have been through.

If you want to know why the rheumatologist didn't offer you lyme treatment, 99% of the time it is just not what they do. You can be chasing rainbows to try to get a doctor who dropped the ball to pick it up again. It takes a huge toll backtracking, trying to figure it out on your own, asking why they didn't do this or that.

Get copies of your tests and take them with you to a LLMD. You don't have to see them to get copies of your tests. Just call their office manager and request the consent form to get this started.

Why are we so emphatic about your seeing a LLMD (before we knew you had a call into one already)?

Because lyme can cause serious damage and needs expert care. Many replying here have been permanently damaged for lack of proper care. We also see, time after time, the same story repeated here.

Delay in treatment can miss very specific windows of opportunity, especially as you were just recently diagnosed with what may be a brand new case (even if you may have had this for years, from previous bites).

Why it is best to hold off on MRI and EEG requests:

A doctor who is not lyme literate will not know how to interpret a MRI. You also may not need one. An MRI can't tell us all we'd like to know. A good LLMD can tell when something is wrong.

An EEG measures brain waves and time after time, hundreds of times over, lyme patients are often told this test is fine, even with major brain wave challenges. What is really best for a lyme patient is a QEEG. But, then, a good LLMD can also determine what is going on without it.

A good LLMD will know if you need these tests and, if so, which doctors would be best to administer and interpret.

That is why it's best to have a LLMD see you in person and assess your history, symptoms, how you walk, talk, sit, comprehend, etc. All that tells them a great deal. Then, they will know what kind of other tests may be helpful.

Even if an MRI came back to your regular doctor with a tattoo saying "has lyme" on the image, a regular doctor would still not know how to properly address that.

Had the regular doctor thought an MRI or EEG would have served you or their basic diagnostics, they would have order those by now. Begging them for tests will not make them any better doctors. White spots on MRIs are often dismissed because they don't know how to interpret the characteristic lyme patterns.

LLMDs know which places do the best tests and who can best interpret them for the official record. They also know exactly how best to order the tests, with certain specifications, etc.

A LLMD may have you go back to your PCP to order tests (if your insurance coverage is involved), but there would be precise details with the test instructions, things regular doctors may not even consider.

Also of concern is that your regular doctors are already very condescending. For you to ask them - yourself - for tests that they would have ordered had they wanted them, will add fuel to the flames. If a specialist orders certain tests, it will make you look better.

None of this is easy so I hope you can find the answers you need soon so you know how best to proceed. Good luck.
-

[ 06-28-2010, 02:21 AM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Some people do need a break from Lymenet, but the reason is that they get upset reading about Lyme all the time. When a doctor doesn't want you reading because you're learning about the disease, that's just wrong.

If you have been diagnosed with Lyme, learning about your illness is not a problem. Get in to see an LLMD! You will feel better mentally about it all when you do.

My OCD was caused by the Lyme and co.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
sutherngrl
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I agree that you have to empower yourself with knowledge; however you do have to take breaks from constantly reading about illness.

I ended up have obsessive thoughts by reading about LD all the time; also ended up with a mood disorder that LLMD says was triggered by lyme in the brain.

Those 2 things added in with LD was too much. So take a break from time to time or you might become overwhelmed. If you tend to worry anyway and get obsessed, then reading about it constantly will just makes those things worse.

When you find a good LLMD, like Six said, you will feel better mentally about it all.

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Keebler
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-
When you find a good LLMD, you won't HAVE to study do much - you can focus on good self-care. That's where the focus should be once you have a good LLMD on board. They do their part; you do yours.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Ann-OH
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I don't have time to read through all this, but I did catch this

"Still pushin' on in St. Louis"

Has anybody given her the names of docs who are experienced in treating Lyme in her area?

Connie, please contact one or more of the groups listed in 'Support Groups' in the menu on your right. There are 6 listed.

~Green Hills LDSG
~Lyme Association of Greater Kansas City, Inc
~Mid Missouri Tick Illness Coalition
~Missouri Lyme/Masters Disease Support Group
~Resources Only
~St. Louis Lyme Foundation

Good luck and feel better.

Ann - OH

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www.ldbullseye.com

Posts: 5705 | From Ohio | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
Consuelachacha
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Thank you all for your support. I honestly do not know what I would have done without this site.

When I feel like giving up, like I do today, I come here to see my friends. I read others stories and know I am not alone and I am not the worst case out there. It doesn't help me getting medical treatment but it eases my mind for a while since I am waiting for Dr.s to return my calls.

Everyone is swamped because of the holiday. Unlikely I will hear this week. Just crossing my fingers.

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Sick and Tired of Being Sick and Tired!!

Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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Keep calling Dr. C at least every two-three days. Additionally, take Keeblers advice. Everything she said is "fact" -- it is the same experience nearly every single patient here has faced.

You don't need a break, that is clear from reading your posts. You need information and to see the correct doctor. Keebler provided a post with links. Read one at a time as you're capable. You will then fully understand the magnitude of what we are expressing to you.

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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]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
buzzsflybox
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God Bless Keebler. SHe calls it like it is. Cottonbrain said it best.

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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.

Posts: 51 | From Northeastern PA | Registered: Jul 2010  |  IP: Logged | Report this post to a Moderator
17hens
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buzzflybox,

AWESOME signature!! I love it!!

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"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

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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What makes this disease even more miserable is the stupid people who tell us we don't have it.

Don't listen to them.

I got test results back after two years of treatment that confirmed I had lyme even according to CDC standards. I was laughing and my husband said, "why are you so happy to find out you are that sick?". I said I am vindicated! It is not all in my head and this is my proof. No one can ever tell me it isn't real.

Read Cure Unknown.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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quote:
Originally posted by nefferdun:
I was laughing and my husband said, "why are you so happy to find out you are that sick?".

You already knew you were sick!

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sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Misfit
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People kept telling me i was like a "dog with a bone" with this "lyme thing". I was vindicated when i had a positive elisa. I burst into tears when my dr told me. I wasnt crazy! By the time i got my dx i knew way more than my dr or anyone else. Im still learning...
Posts: 624 | From Oklahoma | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
BugBarb
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Have you posted in the section dedicated to people seeking llmd's in their area?
You post, then someone private mails you back with the info.
That way, the doctors names are kept off the public forum.

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Lyme is like the flu. You can get it and recover, but you can always get it again.

Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

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