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» LymeNet Flash » Questions and Discussion » Medical Questions » active versus inactive

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Author Topic: active versus inactive
witsend
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I was just told by my doctor that my western blot showed that I HAD Lyme but it is inactive now.

17 years ago I had engorged tick pulled off, had huge welt , round raised ring with deep hole in center and it spread out bigger, very sore.


Went to dr. 2 days later, confirmed Lyme just by looking and gave me Doxy for 2 weeks, said I would be cured.

Now, I have horrid fatigue, alternating joint swelling, hard time finding words, memory loss and went to doc thought it might be flu..

he tested for LYME, called said titer was positive but since I was treated before he ordered western blot.

He called today to say I had it in the past but it is not current. How do they know the difference?

He gave me no numbers or band information.

[ 19. January 2009, 04:49 PM: Message edited by: witsend ]

Posts: 8 | From Pa USA | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
adamm
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I'm sorry to have to tell you this, but that short a course of antibiotics cannot cure Lyme; at this point, even in you only had symptoms, you'd want to assume that you still had and that it was active. Your positive test seals the deal (They're very insensitive but highly specific, so a negative means way less than a positive.).

Corrupt public health authorities (e.g. CDC, IDSA, NIH) have been misinforming physicians about this disease since it emerged, and the result is that we now have a largely-unknown epidemic. Here are some links with which you can educate yourself about what you're truly up against. You should thoroughly study all of them and post in Seeking a Doctor to find someone who'll be able and willing to help you.

lyme-info.net
lymecryme.org
underourskin.com
ilads.org

Good luck--hope you can get the care you need,

Adam

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Wimenin
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Would this doctor you are dealing with be perhaps an HMO, family doctor? If so, sorry to say that most HMO/family drs, and even a lot of neurologists dont know squat about lyme.

The best advice is that you see a lyme literate doctor asap to get proper treatment.

Im of the firm believe that lyme disease (Bb), can go dormant and reactivate when the immune system is suppressed....just like shingles/chicken pox/zoster, mono/EBV, etc.

You had lyme before, no doubt because of the tick and ring...thats 100% positive confirmation. But, given your symptoms, it would be wise to see an expert who treats people for lyme vs a standard family doctor.

btw: Many of the lyme tests are extremely innaccurate. Some will give false positives, some false negatives. Lyme is a clinical diagnosis, and a qualified lyme doctor will be able to help you... Good luck!!

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witsend
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He is walk-in urgent care doctor and I appreciate that he even tested for Lyme...I thought it might be the flu..I was shocked when he called and said the titer was positive.

Saw family doctor 5 days after walk in visit because I was worse and not better. she thought flu: ordered rapid flu test...negative.

One hour later walk=in doctor called to tell me titer was positive. So family doctor ordered Doxy 100 mg capsules x 2 for 4 weeks, but said not to take them until western blot was back. Now they say it is not active. So I have not started medicine yet although I bought it.

Should I ask for copy of the bands from western blot..would that be helpful.

I have not been able to work for two weeks now and am no better in fact worse. I looked up symptoms and so help me God I have all of them!

Could this be what I have had for 17 years? It makes me sick to think so. Thank you for your advice and I don't even know where to start for doctor. I live in southcentral PA

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Lymeorsomething
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Yes, always get a copy your blood work. It's best to take control of your health. Don't be afraid of blood work results. Just do the simple research or talk to forum members to educate yourself. [Smile]

--------------------
"Whatever can go wrong will go wrong."

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Geneal
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IgM or IgG titers being positive with symptoms

Is usually indicative of Lyme.

Not cured at all. [Frown]

Please post in Seeking a Doctor section with your state and city.

That way you can be directed to a Lyme Literate Medical Doctor

And get the treatment that you need.

Be sure to get all of your health records not just the recent ones.

Hugs,

Geneal

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witsend
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Well, I took your advice and called to inquire about the blood work

and was told by the doctor himself that the titer was 1:157

and when I asked about any bands in the western

blot he said there were 2 reactive..why do you

need to know this? YOU DO NOT HAVE LYME disase.


I said...Then why do I have all these symptoms

including Bells Palsy on the right side of my face...

he said follow with your family doctor( Rudely)

and I said sorry to bother you and he hung up.....

So after a good cry I am consoling myself by writing this...thank you for listening.

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DakotasMom01
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Witsend,
If you know what lab was used, you can call the lab and ask them to send you a copy of the test results.

Or call the urgent care that you went to and request a copy. You are entitled to your records.

--------------------
Take Care,
DakotasMom01

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sixgoofykids
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Please go see a doctor literate in the diagnosing and treatment of Lyme Disease.

There is no way they can tell from testing alone whether it is active or inactive, that can be told only from symptoms. I would bet this is what's been wrong the past 17 years and it will get worse without treatment.

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

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nenet
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Hi and welcome witsend!

I'm glad you found us and yet sorry that you had to.

edit: What DakotasMom and sixgoofykids already said - you have a legal right to your test records, and you can just call and request them - you might have to pay a small copying fee - it depends on the office. You should always get your medical records, no one can withhold them from you. So sorry you had to deal with those uninformed docs, but this is very common.

Right now the most important things for you to do are that you read as much as possible about Lyme, and before you do that, you should go to this forum:

"Seeking a Doctor":
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=2;DaysPrune=30

and post a new thread with the title including your general area you are willing to travel to for a Lyme Doctor, and in the post copy/paste a little bit of what you told us here about your history, so people have an understanding of where you are in this process.

Someone will help you by sending you a private message with doctor info, so please make sure your private messaging option is turned on in your profile. We are careful about Lyme Doctor's names due to the controversial nature of this disease in some circles, though the tide is slowly turning.

You are well on your way to getting better, now that you know where to start! I understand all those years of being sick and unsure of what was wrong, but armed with an education of the disease and a little about its politics, and most of all, a good Doctor that you are comfortable with, you will make it through this.

As for understanding Lyme testing, please read this:

"Dr C's Western Blot Explanation"

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

He explains this topic very well.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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Lymeorsomething
Frequent Contributor (1K+ posts)
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Don't put up with lazy and inconsiderate MDs. Keep a file with all blood work and do all the reading you have to. You have every right to receive a copy of your test results. Find a LLMD who can sympathize with your symptoms and help you find out what's causing them.

--------------------
"Whatever can go wrong will go wrong."

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Janice70
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Since you currently have symptoms that means the Lyme is active. I know Lyme can lie dormant without symptoms for a long time--that's not the case for you.
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Lymetoo
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Bells Palsy!? Lyme! Yes, it's active.... what does he THINK!?

Ignore him and post in Seeking a Doctor for an LLMD in your area.

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

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seekhelp
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I'm sorry to hear about your issues and hope you get to a LLMD. I'd call a local farmer and ask them to bring their largest cow in front of the Urgent Care center. Then see if the doctor can diagnose there's a farm animal outside. [Smile]
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