LymeNet Flash: I was told my symptoms were not specific enough to be Lyme

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Posted by smcadwell (Member # 7331) on :

I'm so frustrated. I finally get my primary care doctor to give me a referral to see a specialist; an infectious disease doctor; and he says that my symptoms are not specific enough to point in any one direction. He didn't want to do the blood test over, since it's already been done twice and they both came out the same way, the ELISA showing positive with the Western Blot showing negative. Again, I pointed out that it had only been 6 weeks since the rash had occured and that possibly not enough antibodies were in my system yet. He said that my rash was not a "bullseye rash" and I told him that not everyone's rash presents itself that way. He asked if I remember getting bitten by a tick? And I told him that at least 90% of those with LD do not recall getting bitten by a tick. He still said another test was not necessary as in his opinion I did not have lyme disease inspite of the following symptoms:
rash, swollen hands and feet, painful joints in hands, feet, achey muscles, general fatigue, muscle fatigue, headache, body pains, leg and feet twitches, eyes sensitive to light and short term memory. (these are the symptoms he referred to as not specific enough. I'm so disgusted with the medical community right now I could scream. Why doesn't anyone listen to you? It's like they are repeating what they were told by the CDC as the "textbook" cases, what they will accept as one having lyme disease and nothing less. Basically, it was a waste of my time....In his words..."I'm stumped...but I hope you get better soon." Ohh yeah...on a more redundant note, My primary doctor put me on doxycycline for 4 weeks....I guess it was her way of appeasing me.Yeahhh right.

[This message has been edited by smcadwell (edited 08 June 2005).]

Posted by tickedntx (Member # 5660) on :

It sounds like you are wasting your time with this doctor. He just does not understand Lyme.

If I were you, I would continue to see new doctors until you found one who understood. Call ILADS (www.ilads.org) and get the name of a Lyme-literate doctor. When you call their office, explain the urgency and perhaps you can be seen quickly. Try a few LLMD's, if necessary, to see who can see you the soonest.

You might also call Igenex (www.igenex.com), tell them your situation, and ask them what test(s) would be best to run at this time. Ask them to send you the kit for those tests. Then ask your GP if s/he will humor you and order the tests. If you have to, and if you can, pay for the tests yourself if insurance will not cover it.

If you can get a quick appointment with an LLMD, you probably don't need to do this, but if not, it may be a helpful option.

Posted by tabbytamer (Member # 3159) on :

Lyme rash pictures:
http://www.lyme.org/gallery/rashes.html

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Tabby

Posted by NUTBOBUTT (Member # 7242) on :

WOW! I can't believe some of the quacks!

The same thing happened to me. I "puzzled" 3 MD's. One was supposed to be the best in the state.

But don't give up! Find yourself a good LLMD FAST! Before things get even worse. Hopefully you can get to someone before your end of the 4 weeks on abx.

Posted by SAK (Member # 7387) on :

Gosh, how I understand your frustration!

I went to an infectious disease specialist after nagging my regular dr that I may have lyme (I was diagnosed with MS since 18 years ago).

So, all this specialist did was try to convince me that I had MS by telling me things about lyme that aren't necessarily true...like, I would know that I've been bitten, I would start having neurological symptoms right away...etc.

1.5 years later, after feeling soo discouraged with all MS things that NEVER worked for me, I tested with IGenex and Bowen. I just did it on my own finally and tested positive for Lyme. Now, I'm on abx and we'll see...

So, I would strongly urge you to catch this fast if it's Lyme. Ask for someone (Dr. Harris) from IGenex to talk with you or your dr about your results. Get the Lyme PCR done with them too (if you can afford it). He'll suggest tests.

Also, move on to Bowen Labs and get the test done. I rated second highest with them. It can be really eye-opening.

In the meantime, find yourself a good dr that understands or at least is willing to learn.

Please don't feel discouraged. Some drs just don't know much. You can do this!

Posted by janet thomas (Member # 7122) on :

Hi- go to support groups here on the left and ask for doctor referrals.

Ask for a copy of your Western Blot and post it here.

Don't waste your energy with poorly informed ducks, I mean docs

by any chance do you have a photo of the rash

A bull's eye rash is 100% diagnostic

If you go to another gp and describe your rash and symptoms maybe you'll get another script for more doxy

you're at the right place now.

DOXY WARNING
1-stay out of the sun
2-have food in your stomach
3-take with liquid
4-don't lie down for 30 minutes

you can tally up your symptoms at www.canlyme.com

Welcome, hope you don't have to stay too long.

Janet

Posted by Thomas Parkman (Member # 3669) on :

Dear SM:

Before you completely blow up you might consider that given the ambiguity of the situation the doctor could have a point. On the other hand you did have a positive Elisa, which is the opposite of the way things usually are. As for the Western Blot, which lab did the test? Which critera did they use to rule the test was negative. Do you have a copy of the test results? If so, which bands were negative and which, if any, were positive or equivocal?

There are very important issues. Lyme disease is usually not simply a case of black and white. If you could give us this information, as well as for your own purposes, it could be very helpful in aiding us to make a better assessment of your situation-it would be most interesting to see which bands were positive. Even a "negative" test can clearly indicate the presence of an infection of Bb if the right band or bands is positive or raise some very justified suspicions if certain bands are equivocal.

I agree that your rash does not actually tell us a great deal. I also very much agree that you probably need to get yourself to a lyme literate doctor, contact Igenex,(they can be found on the internet, simply do a google search) and see what their assessment of the testing situation may be with regard to the timeliness of the testing. That can be a tricky situation too. A second opinion, particularly in light of your current dissatisfaction, for your own peace of mind, if nothing else, would seem to be the prudent thing to do.
I hope this helps. Cheers. Thomas Parkman

Posted by perplexed (Member # 1913) on :

My reply is simple and to the point. I had the same reaction as you from a Rhuemie and an ID duck....I do not have much good to say about either. You need to find a good LLMD, which can prove to be a long search depending where you live, and to stick to your guns.

Good luck and keep us posted...

Jean

Posted by smcadwell (Member # 7331) on :

Thank you for your replies. It's not that I'm about ready to blow my top as that I am feeling the frustration from the medical community. As it is, I struggle with doctors, hospitals, therapists and school boards on a continuing basis where my daughter is concerned....she is 9 years old and has spina bifida..in a wheelchair..and we live on the third floor with no elevator..LOL.

Anyways...it's been difficult to pick her up lately and carry her up the three flights of stairs when my legs are weak and my body just does not want to cooperate.

As for a copy of my western blot test. What I'm looking at here certainly does not give me much to go on. Everyone mentions certain bands..and what ones tested positive or negative. Obviously the results given do not show that. The lab that performed the ELISA was Viromed Laboratories in Minneapolis, MN. The lab that performed the Western Blot was Laboratory Corporation of America in Raritan, NJ.
The criteria they have for the western blot looks like:
IGG Interpretive Criteria:
Positive: 5 of the following borrelia specific bands:
18,23,28,30,39,41,45,58,66, and 93.
IGM Interpretive Criteria:
Positive: 2 of the following bands: 23, 39, or 41.

And that's about all it said. It just says..None present/Negative.

The Elisa test however gives a titer score (?) of 1.400 (anything above 1.100 is positive)

I honestly dont know what all of this means. Perhaps one of you can interpret this.

Thanks again for your support.

Sue

Posted by Lymetoo (Member # 743) on :

Talking to ducks can be pretty exhausting! Get a copy of your WB and post it here. If you had a positive ELISA, then you most certainly have Lyme since that test is known for false NEGATIVES.

I would say this duck doesn't know how to read a Western Blot....but we do...so bring it on!!

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

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oops!
Lymetutu

Posted by Lymetoo (Member # 743) on :

OK, so you didn't have any bands show up??

Then the next step is to get a WB from Igenex or a test from Bowen labs.

LabCorp doesn't know how to test for Lyme. Most patients will fall through the cracks on their test.
www.igenex.com

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oops!
Lymetutu

Posted by docdave130 on :

you need to take more than 4 weeks of doxy
need 400mg daily for minimum 3 months to kill three cycles minimum.
a positive elisa is good enough for most insurance companies to cover your treatment.
need to find llmd and do a pcr blood and urine. if positive these are dna tests specific for lyme bb and positive is positive, but like a lyme tests negative doen't mean negative.
cdc treatment is based on symptoms first and tests second.
and yes A BULLEYE RASH OR EVEN CLOSE TO A BULLEYE RASH IS POSITIVELY DIAGNOSTIC OF LYME WHETHER YOU SEE THE TIC OR NOT TOTALLY IRRELIVANT. IT COULD DROP ON YOUR HEAD AND NEVER KNOW IT.

Posted by Kara Tyson (Member # 939) on :

sm,

Unfort. what you are experiencing is very common.

Just because someone is an ID, does not make them an expert in Lyme disease.

That is the understatment of all time.

Posted by sapphire (Member # 4599) on :

there are several good LLMDS in massachusetts and connecticut
these drs are literate in lyme disease
please post in seeking a doctor for your area
my rash looked like ringworm , it sure sounds like you have lyme to me
you need to be treated for 3 to 4 months with doxyxycline at least 200 mg twice a day

Posted by Thomas Parkman (Member # 3669) on :

Dear SM:
Just as I feared. I hate to give you the bad news but your infectious disease doctor does not know **** from shineola about lyme disease. You have wasted your time and money. Lab Corp is useless, totally useless. How can you have all those symptoms, a positive Elisa and nothing, absolutely nothing show up on a WB. That makes no sense. But he has no other tentative diagnosis?

It is true that lyme disease is known, rightly, as the great imitator. Thus your doctor had a right to be hesitant, or cautious, if you will,even in the light of all your symptoms. But something is obviously causing your problems.

Lab Corp is using the dumb bunny CDC criterea which anybody knows are absolute rubbish. So.:

1. Get yourself to a competent LLMD ASAP.
2. While Bowen Lab is controversial, I would go with Igenex. Find what they think about the time constraints on the tests. One of them (IGG?)indicates a new infection and one of them (IGM?)can indicate a long term infection, I forget which. Cheers. Thomas Parkman

Posted by janet thomas (Member # 7122) on :

Hi Thomas, I read your posts with great pleasure, you seem such a gentleman. Now, I don't want to be picky but it's the other way around.

Usually, IgM indicates recent or current infection and IgG indicates a past exposure. Lyme, however,is ever changing and it seems that causes our immune system to keep pumping out IgM. Thus, a chronic Lymie can have IgM antibodies. (and IgG)

Hope that was clear, my mind is somewhat shaky today.

Janet

[This message has been edited by janet thomas (edited 08 June 2005).]

Posted by smcadwell (Member # 7331) on :

Thank you for your replies. I have a bad couple of days so I have not been online at all. I've been getting night sweats now and a stiff jaw along with swollen glands. I agree with those of you who said that I need to take Doxy for more than a month at a time. My doc perscribed a months worth of Doxy to be taken twice a day at 100mg each. I know that's not enough because I certainly don't feel any different; if anything I'm feeling worse. I will send out e-mails to the support groups in my state and hopefully find a LLMD close enough for me to get to. This forum has been really helpful, thank you all again.