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» LymeNet Flash » Questions and Discussion » Medical Questions » I just need some simple medical guidance

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Author Topic: I just need some simple medical guidance
middlemancrisis
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I'm going to keep this super simple, mainly because it seems that there's too much crap on here and it's hard to find what you need when searching.

This past September I was bitten by a tic or two (hindsight made it clear I was bitten after I saw two bulls eye's on my back). Which led to near crippling joint pain from head to toe. I am 24 years old and active (was).

I have gotten tested for Lyme disease at the walk-in clinic a couple of weeks after the pain was so bad it was hard to get out of bed. The test came back negative. I was put on generic antibiotics and that did nothing. I then requested to be put on Clarithomyacin and they put me on it for only 2 weeks straight along with Prednisone. Paired up, they seemed to get rid of 85% of my joint pain. It has been months now without any meds and my joints are starting to hurt again all the time but not nearly as bad.

what I'd like to know is:
1) what is the correct test that will definitively show whether or not I still have it.
2) what course of meds should i be on to rid my system of the disease?

Posts: 3 | From Oshkosh,WI | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
groovy2
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If you saw Bullseye - you have Lyme -
and most likely some co infections-
Babs - Bart ect -

If you did not treat- you still have it-
there is No just goes away -

If there was tried and true treatment
that worked every time -
None of us would be here -

Better get used to reading alot - jay -

Posts: 2999 | From Austin tx USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
ByronSBell 2007
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Igenex Western Blot: for lyme disease

Fry Labs: for co infections (make sure you do the blood smear)


Also find a LLMD fast!

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daise
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Hi middleman,

Yes--I hear you. It's confusing for a newbie, with threads selling stuff and pushing fundamentally wrong information.

I'm sorry you've had bad arthritis. I'm sorry your Lyme treatment thus far has been terrible--you were even prescribed prednisone.

Nearly all Lyme patients are ignored by conventional doctors. We call them ducks. They treat us with wrong meds of all types.

There is no definitive test. The ELISA (Lyme Titers test) is used by doctors and some insurance companies to deny treatment because nearly everyone tests negative, when actually they do have Lyme.

The western blot is the gold standard. Yet most with Lyme test negative. (Blood sample sent only to IgeneX in Palo Alto CA.)

Fry lab in Scottsdale AZ has a different testing method and some say it's better. I don't know.

The CD 57 is a SCREENER for Lyme, after you've had Lyme symptoms a minimum of one year.

You probably need to have a doctor sign-off on all tests. Most conventional doctors will not test properly and they deny chronic Lyme exists. They get their information from IDSA (Infectious Disease Society of America.)

That information given, please know this: you do not need testing because you had a bulls-eye, in fact two. A bulls-eye means your body reacted to the Lyme pathogen. The Lyme pathogen does not "go away" on it's own.

The antibiotics were not enough.

After you've had signs and symptoms one year it's technically called chronic Lyme disease--neuroborreliosis, a brain infection of the Lyme pathogen; a neurological disorder.

After that, signs and symptoms are individual to the patient.

It is a serious disease that sooner or later disables. It can kill.

I'm sorry you were given prednisone. That damages the immune system. I am not a doctor, however if you are still taking it, I suggest you stop immediatly. It will do you no good and it will only cause you harm

Because what has happened? The Lyme is coming back.

Essential reading is: www.ilads.org, left menu "Treatment Guidelines" then click the ILADS Guidelines and print! Below that is Dr. B's 33 pages of tips for 2005. Print!

Good book: Coping With Lyme disease by Denise Lang and Kenneth Liegner MD.

Excellent, recently published: "It's All In Your Head." Book 2 has 80 patient stories written by the patients. It shows what they've been through. I imagine you could relate to it. It's by PJ Langhoff.

Please know that Lyme is a clinical diagnosis!

You need an LLMD (Lyme-literate MD) who also follows the ILADS Guidelines. You can post for a doctor under the forum "Seeking A Doctor" (go to top of any page and click "forum home.")

Most conventional doctors do not at all take Lyme seriously. A number of insurance companies will not pay for proper treatment.

For further information, BettyG will probably come on this thread and offer to email the newbie package of information. When put on your computer, it is searchable.

I need to leave, now. Hang-in there, middleman.

daise [Smile]

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breezywings
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Unfortunately, there is nothing simple about this disease and there really is no quick cures.

I think Groovy's advice is great. You need to get to an Lyme Literate Doctor immediately. Most of us that are in the third stage of this disease is because we didn't get the proper diagnosis or treatment.

I would suggest going into the forum "Seeking a Doctor" and post a thread with where you live. You will get a response.

That is where I would start.

Good luck and please come back and let us know what is going on.

--------------------
...~*Just keep swimming, Just keep swimming*~...

Posts: 120 | From New Jersey | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Wow, that doc who saw you was really uneducated about Lyme Disease. Antibodies won't show up for weeks after a bite and the bulls eye rash is diagnostic for Lyme on its own. Grrr that he gave you steroids as they are BAD for Lyme.

You were undertreated and need to see an LLMD immediately. Don't let it get any worse before you pursue treatment.

You can post under seeking doctors to find one near you. Most of us have to travel ... I fly from Ohio to NY for treatment.

The most accurate test is the Western Blot by IGeneX. There is no simple answer regarding meds because the bacteria is resistant to treatment. It generally takes many different combinations of meds to get rid of it.

I would suggest reading Dr. B's guidelines on www.ilads.org.

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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
middlemancrisis
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Thanks for the replies. I'm not too far from an LLMD. But he can't start seeing new patients until July. I guess i could make an appointment. I have a unique situation. My fiance works as a MA in a walk-in clinic and a couple of the doctors are our friends. They will prescribe and test me outside the parameters of regular visits. I know they don't know much about LD but thats why if I could get the info to steer them in the right direction it'd be for my own good and perhaps they'd learn something as well. I was put on prednisone because literally, all exxagerations aside, i could hardly stand up from getting out of bed and my joints were killing me, I was near tears. the first kind of that pain for me ever. So I suppose I could have them send out my blood sampling to the place all of you mention. But if there are multiple antibiotics that I'd have to take at the same time, it wouldn't be a problem as i said, getting the prescription is no problem.
Posts: 3 | From Oshkosh,WI | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I would have your doctor friends read the guidelines at www.ilads.org. It has all the information they will need to prescribe you meds.

I would also take that July appt.

We all understand the pain ..... I needed help walking in the beginning.

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

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
daise
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Hi middleman,

For example, you could see the LLMD and get a written recommendation for treatment--that is for you and your signs and symptoms, and for any coinfections--and then bring that to the doctor you mentioned, to actually prescribe treatment.

You'd need to see your LLMD from time to time for updated treatment recommendations.

Ketek is recommended on Dr. B's Guidelines. However, it was a new drug and now found to be dangerous--though a very small number take it.

Please keep in mind that IDSA rules nearly all of the conventional medical field. However, ILADS doctors treat we hurting, desperate patients, at risk of losing their licence to practice.

Who would do that? Hero doctors!

Hang-in there! For most, Lyme is painful. We hear you!

daise [Smile]

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Geneal
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Hi. It is a lot of info and can be very overwhelming. [dizzy]

Since you can't get a visit with a LLMD until July,

There are a couple of things you can do in the meantime.

Call Igenex, Ca. Have them send you a Lyme test kit.

Test kit comes free to you.

Have your friend doctors write out an order for tests 188 and 189 (Western Blot IgM and IgG).

Have blood taken for test on Mon or Tuesday.

You need to enclose a check for 190.00 for test, but they will send you a receipt

That you can file with your insurance company for possible reimbursement.

Take the closed up kit to Fed Ex and send it off.

The test results will come back to doc who wrote the order,

But basically all you need is a copy of this.

I started on doxycycline (300-400mg a day).

Since it is summer, there may be a different alternative to doxy due to sun issues and burning.

Get your test results and post here.

You wouldn't of happen to take a picture of that bulls-eye rash?

If so, the rash is Lyme disease. You don't need further testing.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
daise
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Middleman,

I forgot to say that getting an appointment in July with an LLMD is getting it in record time!

Of pressing concern is that you took prednisone. You really need to see an LLMD or to atleast get their written recommendation.

daise [Smile]

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Lymetoo
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quote:
Originally posted by sixgoofykids:
Wow, that doc who saw you was really uneducated about Lyme Disease. Antibodies won't show up for weeks after a bite and the bulls eye rash is diagnostic for Lyme on its own. Grrr that he gave you steroids as they are BAD for Lyme.

You were undertreated and need to see an LLMD immediately. Don't let it get any worse before you pursue treatment.
==========================

I would suggest reading Dr. B's guidelines on www.ilads.org.

Ditto, ditto, ditto!

More info:
http://www.ILADS.org/

Wild Condor's Links and information:
http://wildcondor.com/lymelinks.html

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

Posts: 95813 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
roro
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middleman, sorry, but this disease is anything but simple. There has not been enough research done on how to cure it, thats why there is so much controversy about treatments.

if you have good open-minded doctors, they may prescribe you doxy to tide you over until you can see the LLMD in July.

But dont count on them being able to treat you for the long term. its not their fault, they just don't know enough about the symptoms, co-infections, and combinations of antibiotics.

My LLMD took a long history of all my symptoms, misdiagnoses, places I lived, and test results. He also took into considerations which medications I had allergies to. He then determined from all that info that I have lyme, bartonella, and babesia, and that the bartonella was the worst. He put me on a combo of three antibiotics, pulsing one of them to see how I woudl react, then after a few months put me on another 3 antibiotic combo. eveyone is different and has different needs. its very complicated, and based a lot on trial and error.

As for the pain, it is much safer to take pain killers than to take steroids. The risk of addiction is much less than the risk of what steroids do to your immune system when you have a chronic infection. you seem like a very strong man, I dont think you will have any problem with risk of addiction. Its very important to get pain under control or it can weaken your immune system. If you are expending too much energy fighting pain, you dont have enough energy to fight the disease.

I did have to take steroids once, because I had a meningitis so bad that it was pressing on my vestibular nerve and my vision was at risk. But they try to stay away from steroids for the most part.

Posts: 615 | From maryland | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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howdy,

is it DR. H you have an appt. with? outstnading references he has!!!


i just sent you my newbie package. do as instructions say on 1st page ok. then you can do a workable search,

edit, find, and type in IGENEX ..hit enter until you come up with DETAILS galore and naming all 5 lyme dx labs we have.


edit, find, and type in NOIR ... no inrared sunglasses to wear when you are on DOXYCYCLINE; an ways to dress/protect yourself from severe sunburns.


hope you share this with your dr. friends!! thx

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