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Author Topic: any one else?
MADDOG
Frequent Contributor (1K+ posts)
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Hi Gang
It has been awhile since i have been here.

I can be so sick,feeling terrible,diareah,cold chills,choking,exhausted,sore all over,like the death angle is following me around.

And my blood work is perfect every time,i can be in the ER and the blood test are fine.

This is like 8 times this year I have been tested.

3 times so bad i went to the ER.

So they think i am crazy.
MADDOG

Posts: 3664 | From Ohio | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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"So they think i am crazy."

And I think they are lazy and ignorant. They are not interested in learning more about science and human physiology, etc.

I've been there, too, in the ER or elsewhere passing out, seizing and even got kicked out of an ER for seizing but they accused me of trying to throw myself off the table.

Later, my GP told me the importance of magnesium and how to stay out of ER during seizure-y times with prevention and if I would wind up there again for such she sent a letter for IV magnesium.

Magnesium might - or might not - be part of what's going on with you but I'd start there.

The ER docs are not doing the right tests - and yet tests are not going to show everything. We think that we can test everything and get a computerized printout of the body functions but it just doesn't work like that with all points of health / illness.

The scary part, of course, is that they do only certain things even in the ER. And they stop very short, indeed.

I'm hoping that you might have some discussions with some good LLMD or LL ND about these events and what they THINK (with their wise and experienced mind) might be going on so as

to decide if certain tests might help

or if certain actions might be helpful to offset the severity of such attacks in the future.

Also know that the ER is just not usually in the right mindset or intellectual capacity for things they cannot see. They might be great at the structural stuff like from accidents but with soft tissue and other stuff, they seem determined to ignore and

blame the patient. It's the way they are taught and also since the system is just designed with flaws they are not open to think about what else. They are there for patching up, mostly with near zero sleep, bad nutrition and noise stress so their own brains / bodies are not at optimal positions.
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Posts: 47263 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set

A couple of the first links here speak to magnesium in the ER - and how it might keep folks out of the ER, too.

Again, your case is likely more complex yet it's place to go back to just in case.

With diarrhea, you'd want to be sure you get a certain kind of magnesium, of course. Still, you'd likely still need up to 2,000 mg a day in divided doses, 3-4 x.


Porphyria? Have they checked basic porphyrins? There are over 11 kinds and usually they only check for urine. Blood and stool would also require testing yet it's something to consider. Look up both American & Canadian Porphyria associations / foundations.
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Posts: 47263 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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What you describe could certainly be porphyria attacks. At least important to consider.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?#000000"

what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . .

what to avoid . . . what can help . . .

Some links here are expired yet you can find the detail by searching with article titles / authors.
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Posts: 47263 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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MADDOG .. I'm sorry you've been feeling so awful ...

Take a look at this possibility:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036299;p=0

Get better soon!!!!

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

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Bartenderbonnie
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Very sorry to hear you are sufferring so.

You NEED to make an appointment with a LLMD.

If you have learned anything along this healing journey, it is that any doctor not trained in TBI's, can cause even more sufferring. They are simply not educated to be able to really help us. Basic stuff, yes. Complicated stuff, no way.

A Lyme patient that trys to diagnosis and treat one self is set up for many backslides and failures, IMO. I am learning this the hard way. We NEED a specialist, with their expertise, guidenes, compassion, hope.

E.R. is to stabilize patients.
All testing is flawed. Basic CBC test included. The cut-off margins for what is high, low, normal shouldn't pertain to a one-size fits all. A doctor can't really treat his/her patient the way they would like to. They must stay within the guidelines when prescribing. Patients suffer big time.

Also the tests ordered must be the RIGHT tests. Doctors must be up for the challenge when they are dealing with a complicated patient. These doctors are scarce.

You are sick. Your pain is real. Clearly, anyone can see something is wrong. You don't have answers and not from lack of trying. It's just you are looking in the wrong place. An LLMD will give you a complete physical work up and hopefully get you feeling better. Good luck friend.

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hiker53
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Sending up prayers for you, Maddog!

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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MADDOG
Frequent Contributor (1K+ posts)
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I checked out the porphyria,interesting.

No doubt everyone is right i need to go back to a LLMD some were.

I can never find one that takes insurance anymore.

The one i wan't to see is in oxford ohio but starting cost is 1000 bucks.Only 8 miles away from were I live. The price includes a 23 and me advanced dna test and a membership type thing.

MADDOG

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aklnwlf
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On no Maddog! Chasing that bad angel away for you! I'm checking out that porphyria link too. I was diagnosed with Mast Cell Activation Disease too in 2016 and am treating for that (thanks to TuTu). I wonder about porphyria.....

Hang in there!

[group hug]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Robin123
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Yes re normal testing and being sent to psychologists - story of my undx'd years. I always thought there was a silver lining - I dealt with all my life issues - ie was well therapied and better adjusted as a person by the time I got diagnosed with Lyme!

Ask 'em to look at your blood under an electron microscope for the ketes!

Posts: 12544 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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I'm sorry, but I don't know of any LLMDs who take insurance in OH (or anywhere else, for that matter!!!).

Here are some links for financial assistance information which might help you:

"Financial Help and Other Information"

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

http://whatislyme.com/assistance/

The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you

Posts: 8366 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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