LymeNet Flash: PCP says, I dont have Lyme! All tests are NEG!

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Posted by BostonLyme2005 (Member # 7680) on :

Hi Guys,

I went to see my PCP on Thurs. He began to tear me a new butt, in a nice manner. He told me all about the tests that were done, how sensative they are, all the false/ned, ratings, not having a rash, known tick bite, that crap.

I told him that many, many people have Lyme, who failed many, many tests, suffered for years only to find out they have Lyme now, and it will never go away due to lack of treatment.

He ordered some new tests. I have to have another one done this week. I have been on Amox. 1500mg's for five weeks now. My legs are getting numb again, but it goes away some days. It went away for the most part, I think it may be a herx thing.

I have not yet had the Igenex testing, but will at the end of the month. I have to stop the meds for a week I was told by Igenex, so I want to give it some more time. I hope the tests I had done the other day will not be affected by the Amox.

Does anyone have any suggestions for me on what info I should provide to my PCP to better educate him about Lyme. He is keeping a small part of an opened mind about this...

What do you guys think?

Thanks!

Posted by Dayle Ann (Member # 1657) on :

I'd suggest getting a copy of "Lyme Disease Update: Science, Policy, and Law" from the LDA. It includes a digest of science relating to Lyme Disease, variants, treatment, testing, etc, along with references to the cited material. See the Lyme Disease Association website to order. I believe it is about $10 with postage.

Another thing you can refer him to is the ILADS guidelines, which can be ordered directly from ILADS: http://www.ilads.org The website includes a summary, but the guidelines themselves includes all the references used to build the guidelines.

I am suggesting these two resources because they give a good overview of the whole picture relating to diagnosis and treatment of Lyme disease, rather than just isolated concepts, which may be dismissed by a doubtful practitioner as esoteric.

Good luck. Massachusetts could sure use soem drs who can see past the limitations of the ID guidelines.

Dayle Ann

Posted by Foggy (Member # 1584) on :

Find a new Lfriendly PCP for a 2nd opinion.

Be your own advocate. Most PCP's don't take it personally if you get a 2nd opinion.

Posted by janet thomas (Member # 7122) on :

1- get a new doc, you nedd a lyme experienced doctor not a duck

2-go to www.canlyme.com click on symptoms and tally yours up- 20 or more is a high potential for Lyme- print and take to dr

3-google seronegative Lyme and give him some of the more convincing material.

4-get tested by Igenex ASAP

Posted by johnnyb (Member # 7645) on :

quote:
Originally posted by BostonLyme2005:
Hi Guys,

I went to see my PCP on Thurs. He began to tear me a new butt, in a nice manner. He told me all about the tests that were done, how sensative they are, all the false/ned, ratings, not having a rash, known tick bite, that crap.

Oh, boy, does THAT sound familiar. I got the same speech, and I had even found a tick stuck in my head! [bonk]

Get the Igenex WB done.... but many docs will dismiss it as a false positive if they don't understand lyme.

- JB

Posted by Andie333 (Member # 7370) on :

Hey, Boston!

Others have given you good advice about the situation with your duck.

I just wanted you to know that numbness is one of my major herx symptoms.

Whenever it happens now (it did today, actually), I just figure things are still working!

Let us know what happens, please.

Andie

Posted by DR. Wiseass (Member # 6777) on :

BostonLyme -

Hey - been there....with many a doc. Just be glad you weren't sitting half naked while getting that speech, as it makes one a little more uncomfortable.

Your PCP is just going by what s/he was taught in medical school, which wasn't much, with regards to Lyme.

Finding a more Lyme-friendly PCP at this point may be a bit of a challenge.

If your PCP is the least bit 'open-minded' about it, and has a 'teachable spirit' - you might just be doing him/her a favor and the future patients if you stick it out enough to share some information.

If your current PCP is willing to run the Igenex test, I'd stick with that one until that test is run and results are received. It's not rocket science reading an Igenex test result - as they pretty much spell it out as to whether it is positive or negative.

In the meantime, if you believe you have Lyme, which that's what it sounds like to me - you need to start searching for a sometimes hard to find LLMD.

If, after your Igenex tests are returned, and your doc is not willing to eat his/her words and express a WILLINGNESS to learn - then I would tell him/her that I NEED a doc that IS willing to work with my LLMD and be willing to GROW in their knowledge of this disease, and then nicely ask for a copy of all your records.

I'm sorry your doc 'nicely' tryed to rip you a new one -- but again, just be grateful you weren't in a paper gown with your feet in stirrups while it was happening - because BELIEVE ME - that is a VERY DIFFICULT and emotional experience to endure...and I AM EXPERIENCED!

Keep us informed.

Blessings,

Posted by lymeinhell (Member # 4622) on :

Lymed gave you good advice for papers. I used Dr. Burascano's Guidelines to finally convince my PCP to get me tested at IgeneX. But at that point (9 months of heck later) [bonk]

, I finally went to see an LLMD.

While you may be able to broaden your PCP's horizons a bit, in all honesty, he may not know what to do to treat you, and educate you during your treatment plan.

Best advice is to get to an LLMD. And BTW, if you haven't begun taking Magnesium, please do so. Start with a low dose (if you can find 80mg or so) and take frequently. It might help with the numbness and tingling [Big Grin]