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» LymeNet Flash » Questions and Discussion » Medical Questions » Your Opinions please

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Author Topic: Your Opinions please
Crawgir1
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I'm just now really addressing whether I should pursue Lyme Disease testing. I have been through so much in the last 5 years, and been treated with disdain from various doctors for my mysterious symptoms, and am not looking forward to any further testing.

I also no longer have insurance, so that is a big factor. One evening while I was dressing for bed in June 2008 I found a bullseye on my stomach, the next morning, I had severe paralysis on the right side of my face, which has not gone entirely away yet.

One strange thing is that I had "Bells Palsy" about 5 years prior, and it lasted 3 1/2 weeks, then was gone. Since 2008, I went through divorce and breast cancer, along with 7 surgeries, and figured that my lack of energy, headaches etc. were from the anesthesia of so many surgeries, and that I just wasn't bouncing back.

It's been near to 2 years since my last surgery now, and I'm losing patience with my symptoms. Right now I have a kidney stone, which I only started getting in the last few years also, and the symptoms seem magnified. I have an itchy rash on most of me, I have almost a Parkinson's twitch going, brain fog, and my headaches are what I would call meningitis-like in their intensity at times.

Some "symptoms" I have taken for granted as just part of me, because at this point, I don't know anything different. Can any of you guide me as to what type of testing etc. I should be looking for?

I wanted to see if my regular doctor will cooperate with me before going up to Duke U, and without insurance, I'm likely to be a cash patient (without much cash LOL!) I'd appreciate any input you may have. [bonk]

**edited for easier reading**

[ 03-14-2013, 01:17 PM: Message edited by: Lymetoo ]

Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Why would you NOT want to get tested?? Everything points to Lyme. Bells palsy is highly associated with Lyme disease. You even had the rash, which many never have or never see.

I would suggest a doctor who will do testing thru Igenex Lab. www.igenex.com Ask for test #188 and 189 .. Western Blot.

Surgeries can make the Lyme come out and have a party.. so it all fits.

I doubt anyone at Duke will help you. They'll run a test thru LabCorp or Quest and when it comes back negative they will dismiss you.

Even if it comes back positive, they may tell you it is negative, or will NOT treat long term anyway.

So... find an LLMD.

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

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desertwind
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If you have had that many surgeries chances are you were given some form of a steroid which is like food for lyme and death for the immune system. Not a good thing.

Your symptoms sound very classic of lyme and /or other tick related infections. You need to see a LLMD.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
Crawgir1
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The LLMD doctor that the moderator referred me to is a Duke doctor, that's what I was referring to. I have had a good amount of steriods over the years, that's how they treat the paralysis along with anti-virals. I thought for a while that I had Ramsay Hunt syndrome, due to some other symptoms-but have not had that verified either. I've had one after another doctor look at me and throw their hands up or dismiss me. One reason they looked at Ramsay Hunt-which is related to shingles, is the tremendous pain I underwent with the paralysis the 2nd time. Bells Palsy does not involve pain, and is not triggered by stress. My memory is full of holes these days, and I'm trying to put my history together on the series of events and symptoms along with treatments. I'll contact the referred doctor's office soon-does anyone know the cash cost of tests #188 and #189? I'm going to have to go this out of pocket. I'm really sick of being sick, but have a fear of hypochondria-as my grandmother had it really bad and spent her last dime on doctors.
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
Crawgir1
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I called the IGenex Lab just now, and the man that answered was so helpful. He is sending me the test kit at no charge, and said to have the doctor call there and speak to one of their physicians about which particular tests to run. The panels cost between $100 and $400, with co-infection tests $105-$780. Thank you so much!
Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Yes, the WB is around $200 .. glad you called them. They know how to take care of people over there!

If you go to a local Dr, they may not be willing to run the test for you. The LLMD will certainly do it for you.

Coinfection testing is important, but do understand that they are often negative EVEN WHEN YOU HAVE THE ILLNESS.

So happy you are on the right path now!

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

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KentuckyWoman
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My advice from a dirt poor, been in your shoes only 4 months ago, trying to see IF I had lyme.

All signs say "yes" Skip the standard WB testing. Don't waste your time and emotions with their wild and unpredictable results.
I did that route, thinking since insurance covered it, then what's the harm? I had only one + on that test and declared "don't have lyme." But I do. It was very frustrating.

The IgeneX is the way to to. If you know what you have, then THAT is half your battle.

It will remove all the frustrations of Dr-hopping and Rx taking guinea pig testing for clinical dxs by Dr who do not know lyme.

Once you know, then you can refocus your attention in PROPER care and management of your health and feel more EMPOWERED in the right direction.

Glad you called IgX, they are very helpful. Make sure you are off steroids as directed for best results too.

Best wishes for speedy recovery [Smile]
kw

--------------------
KentuckyWoman
tired of medical run-arounds

Two roads diverged in a wood, and I, I took the one less traveled by,
And that has made all the difference.
~ ~ Robert Frost

Posts: 221 | From Kentucky | Registered: Sep 2012  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Neither your regular doctor, nor "going up to Duke University" will likely be of any help.

However, you say: "The LLMD doctor that the moderator referred me to is a Duke doctor" (end quote).

Be certain. Most university doctors are NOT at all "Lyme Literate" - but the opposite. Sometimes names get passed along and they are not really ILADS LLMDs - see links below for how to check.

Now, I know without insurance, options may seems very limited. Still,

You were bitten. You had the classic bulls eye rash. You had Bells Palsy and other serious classic signs of neurolyme.

I'd say it's very clear that you are dealing with, at least, lyme. And, there are some things you can do for yourself as you sort this through. Reach out to your local and state lyme support groups.

I would say that you do not need any lyme test. Your body has been the testing ground and provided that information. Still, if at all possible, see a LLMD for a full assessment -- and also to consider other infections that can go with lyme.

I'd save money from any lyme test for a LLMD &/or testing for OTHER tick borne infections.
-

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Keebler
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-
A FEW BASICS
------------------------

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

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

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

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

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

The Lyme Controversy:

http://www.youtube.com/watch?v=PVPRWiukp_M

http://www.youtube.com/watch?v=8yk0C-uX9cU&feature=related


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031097;p=0

Topic: NPR (Nebraska) Radio Interview

See listener comments, too. They show us how very wrong of the ID (Infectious Disease) doctor who was interviewed. Very typical, though, and why ID doctors are not the ones who help those with lyme.

Neurologists & rheumatolgists also follow the same umbrella group (IDSA) that ignores lyme and discounts those who have it.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000000

Making the most of your LLMD visit
-

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Keebler
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-
I'm so sorry that you were given high doses of prolonged steroids. Sadly, that often complicates a case.

It's important to know the detail here - but don't get sad when reading it - just become aware of what they should have told you, what they should have NOT done -- and then know going from here.

NEVER just suddenly change dose or stop steroids, though. Sudden shifts can be dangerous.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme?


However, LOW DOSE adrenal hormone support can be of great help:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=119975;p=0

Cortef ? Adrenal links for support
-

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Keebler
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You say that "Right now I have a kidney stone" (end quote)

The herbal tincture, STONEBREAKER (CHANCA PIEDRA), by Herb Pharm is carried at most natural foods markets and some vitamin stores. You can also get it from their one web site and others.

More detail here:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/123173?

Topic: kidney pain

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

Right now, be sure you are not getting ANY food additives. They can make all symptoms much worse.

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

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

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Keebler
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-
You write: "rash on most of me, I have almost a Parkinson's twitch going, brain fog, and my headaches are what I would call meningitis-like in their intensity at times. "

While lyme and other TBD (tick-borne disease) can cause all this, it also sounds like

MAGNESIUM DEFICIENCY (and that often is a result of lyme and also of not processing nutrients well).

However, be sure to DIVIDE THE DOSE 3 x a day or more. Never all at once as that can be hard on kidneys and yours are already stress.

I also think that Magnesium might help reduce pain level and smooth tight muscles. It sure can calm twitches and spasms.

As for calcium that needs to balance magnesium, it's really important to not take the cheap form or calcium (or the cheap form of magnesium, either). You need the most bio-available forms and also to get from food for a well rounded approach.
-

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Keebler
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-
Much of this is from CarolinPA's posting history, combined with some of my own notes:
---------------------------

There are some good brand of liquid magnesium. Cardiovascular Research (brown glass bottle) is one.

If you buy liquid (anything) it's best in GLASS rather than plastic.

Magnesium citrate (as in NaturalCalm power you put in water) is best 3 x a day.

Some like magnesium glycinate better. Citrate and Glycinate have slightly different effects so if one causes too loose bowels, switch to the other form.

Never take the full day's dose of magnesium at one time as that can stress the kidneys. It should always be taken 2 - 3 times a day and,

yes, on a daily basis. Magnesium helps the liver, helps nerve fibers . . . and so much more. It's one of the best support supplements for lyme treatment.

You would take it to bowel tolerance, some take about 200 mg 3 x a day -- but many do better with up to 1,000 mg - or even 2,000 mg a day (especially those with neurological issues).

Take up to the point of loose bowels and then back down a bit.

Calcium and other minerals need to be in balance, too. Hopefully, your LLMD has advice on brands.


http://www.naturalnews.com/038713_kidney_disease_magnesium_nutrition.html

Kidney disease REQUIRES MAGNESIUM - Jan. 2013

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

http://www.mbschachter.com/importance_of_magnesium_to_human.htm

THE IMPORTANCE OF MAGNESIUM TO HUMAN NUTRITION

-by Michael B. Schachter M.D., F.A.C.A.M.

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

http://www.iherb.com/Natural-Calm

Peter Gillhams Natural Calm choices

--------

http://www.iherb.com/Peter-Gillham-s-Natural-Vitality-Natural-Calm-Plus-Calcium-Raspberry-Lemon-Flavor-16-oz-454-g/22854?at=0

Peter Gillham's Natural Vitality, Natural Calm Plus Calcium, Raspberry-Lemon

This also has vitamin C, D3, and a few other good things


http://www.iherb.com/Liquid-Magnesium

Liquid Magnesium Choices


http://www.iherb.com/Magnesium-Glycinate

Magnesium Glycinate choices
-

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Keebler
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Now, for some hugs. I'm so very sorry you are going through all this. Also so sorry that it may seem without insurance that there are roadblocks.

Still, there are always things that can help.

May you continue to have the courage that has held you up for so long, not too much sadness over the complexity of it all and some relief in at least being sure that you are pursuing the right path in your inquiries.

Feel love and appreciate beauty. Find a laugh or two, or at least some irony. Take care.
-

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Crawgir1
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You have certainly given me a lot to ponder! I'll get the magnesium right away.
I was wondering while reading the part about adrenal hormones and steroids if the Tamoxifen I took for only 6 months to please the oncologist may be to blame also. That stuff shuts down your adrenal glands basically, and I had the same symptoms as strong steroid doses when I took it.
I went back to my new local doctor today due to the major headaches I've been having with the kidney stone(s), and I told her about my call to IGenex lab-asked her if she would be amenable to helping me find out if I have Lyme Disease and exactly how to get me back to health. She admitted that she was probably the only one in that office that would help me with that, and that she has several patients that have unusual symptoms that are hard to diagnose. She would definitely be the cheapest route as far as fees etc.
@Keebler said that basically I already know I have LD, and I should skip those tests. How can you really get a doctor to cut to the chase? Don't they want to have the "positive" test in front of them first? As far as co-infections, I'm a little confused. Is LD basically the generic, and the co-infections the specific? How can I narrow down the testing to specifically what seems likely? I've had these symptoms so long, I'm afraid they run the gambit.

Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
TF
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Lyme disease is generally the main disease that people get and the bulls eye rash is the sign that you have it.

But, tick bites give you much more than lyme disease. They give you many other co-infections that become just as bad as the lyme disease as time goes by.

For example, anyone sick with lyme for at least a year generally also has babesiosis and bartonella. These are called the "big 3."

Many have other coinfections also. These diseases are so common among those that have lyme thata they call them "coinfections."

A lyme patient can have 13 things wrong with them by the time they get to the first lyme doctor. Magnesium deficiency is one such thing. Lyme depletes you of your magnesium.

To read more about the coinfections and the testing for them, you can read this document:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Read the supplement section of this document to see all of the supplements that are required. For magnesium, Dr. Burrascano recommends Mag-Tab SR (sustained release) by Niche. You can go to or call the WalMart pharmacy and ask them to order it for you and it will be in the next day. It works wonders! Generally within a week the person notices a difference. Take 2 to 4 per day.

Until you get to a lyme specialist, you won't be treated for anything but lyme because regular doctors don't know how to treat the coinfections. In fact, they don't really know how to treat lyme disease either.

The tests for lyme are not that reliable. The tests for the coinfections are even less reliable. So, some lyme doctors skip the coinfection tests and just treat you for the big 3 or treat you based on the symptoms you have. If you have symptoms of babesiosis, then they treat you for babesiosis.

Unfortunately, a lyme patient will not feel better until ALL of the diseases they have are taken care of. It is like going to a doctor with 13 nails in your foot. You won't feel better after he takes out 3 of them. That's the way it is with lyme and the coinfections and the parasites and deficiencies that go along with it.

So, get to an outstanding doctor and begin the long road of getting rid of these horrendous diseases.

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Lymetoo
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Definitely get tested. Then there is less doubt. It COULD come back less than clearly positive, but an LLMD would look past that and treat you based on symptoms. That is called a clinical diagnosis.

It's nice that the Dr will do the test for you. Make sure the lab doing the testing follows directions on the blood draw and the spinning of the blood, etc.

Also, make sure it is done early in the week.. no later than Wed so it does not sit around in a post office over the weekend.

-
PS .. More people here will be able to read your posts and offer help if you will put space between every few sentences. Many of us are visually challenged! [Smile]

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

Posts: 94168 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Crawgir1
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Lymetutu: sorry about the congested posts! I'll be more careful from now on!

See?

After reading all of your posts, I now see why a regular doctor may not be the answer regardless of whether they are "believers" or not. I will seek out the LLMD that Lymetoo suggested via PM.

I went through the checklist, and there isn't much on there that I haven't experienced. I just realized (memory problems!) that the bullseye rash I had was in 2001, the first time I had facial paralysis, not in 2008. I've been sick for a long time. Thanks for your help!

Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
   

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