Have symptoms; doc says negative for lyme

[rshawsart]

Hi everyone,

Two weeks ago, I went to the doctor because I've been having constant lower back pain for the last month and terrible sinus pressure/pain for several years (I am a major procrastinator!). I made appointment because I started to have chills and general fluish feeling and thought it may be a kidney infection (because pain radiated from kidneys into hip). I also told him about waking up with extreme pain, tingling, and numbness in my right arm and have had the tingling/numbness pretty constantly. He suggested that it is probably a musculoskeletal issue but I should probably be tested for Lyme. I've never noticed a rash or bite, so he seemed skeptical about that.

My ELISA came back positive so he gave me a rx for doxy. After I took one dose, the nurse called and told me the Western blot only showed 2 positive markers (out of the 10 that were tested), so I don't have lyme and could discontinue the doxy. I am still taking the antiinflammatory he prescribed, however, with not much relief of the pain.

I now have pain in right knee and back pain has moved to hip. Tingling is pretty constant in hand and foot. I am wondering if you guys think I should search out a lyme specialist. Is it possible to have lyme if WB is negative? I am in central PA if anyone knows any good lyme docs around here.

Thanks!

[mojogal]

Yes, my western blot was negative and I have Lyme and Barts which can cause many problems and so can other co-infections. Lyme is famous for giving false negatives and doxy actually is a good place to start. If it were me, I would find a Lyme specialist, which we call LLMD, Lyme Literate Docs. Iladsdotorg can give you a name of a specialist near you. Since I was treated, I have had dramatic improvements and if its not Lyme the LLMD can direct you in which way to turn. My Lyme Brain as I call it (Memory issues gallore) does not let me go into great deal like others on here but that is what I would do. Good luck to you and let us know how it turns out.

[JasonMChicago]

I agree with the other poster.  Find an LLMD right away.  My guess (non medical but person who's been there done that) is that Lyme is the culprit.  I had VERY similar issues before things went crazy downhill.  My personal opinion is you don't need a positive test result b/c Lyme is a clinical diagnosis.  If you find an LLMD great. If not consider taking the herbs in Buhner's Lyme book for several months and see how it goes.  They're all immune boosting herbs and EVERYONE can use some immune boosting!  My sister has Lyme (even though she doesn't know it yet) and she has knee pain, back pain, sleep problems, etc. but her doctor said her test was negative so "no Lyme."  All her pains started after a trip.  I sent her Cat's Claw, Vit C, and two other herbs and told her not to argue and just take them.  Guess what?  Her pain has gotten better.  If she really attacks it head on she'd be good in no-time!

[Ricobord]

Did you get a copy of your Lyme test results?  If not, call up your doctor's office and request a copy of everything.  It makes life easier when you decide to go to another doctor. It also ensures you know what tests have been run and what the results are.

Your symptoms are consistent with Lyme.  If the two bands that you did show on the WB are Lyme specific, that would be a very strong indicator of infection.  There is a lot of controversy in the world of Lyme, with most doctors following what they were taught by doctors who take a narrow, simplified view of the disease.  The CDC surveillance criteria was not designed to be an absolute disgnostic tool, but unfortunately it has become one.  

I tested negative on the screening test. Later, at IGeneX, I showed 3 bands on the IgM, 2 of them Lyme specific, but only 1 that the CDC cares about. On my IgG, I only had 1 positive and 1 indeterminate. The CDC wants to see 5 out of 10. Despite my so-called-negative test results, I do have Lyme and now I am getting better with abx.

You need to find an LLMD in your area who can make a clinical diagnosis with tests as a support, not as an absolute. I believe there was an earlier post on this forum about docs in PA. We don't publish their names here as many of them try to keep a low profile due to the controversy.  Just search the forum for LLMD PA and send a private message to the person who posted, asking if they'll share their list. You can also check with a local Lyme support group, and also at www.ilads.org.  They have a doctor referral service.  

The sooner you start antibiotics, the easier it will be to get well.

[youvegottobekidding]

You can be positive for lyme with only two bands positive.
The relevant  question is, which bands were they?
If you can post the bands here, I'll look it up in my lyme book for you and double check it with ILADS guidelines.
Meanwhile, I do think you should also look for a lyme doctor to give you a more definitive judgement either way.

[rshawsart]

Thanks everyone. I think I need to go to an LLMD. I've been working with my chiropractor who knows a good one in the area. I now have extreme pain in ribs for the last day. I'm thinking I'll make that app't. soon.

[JackieCalifornia]

Go for it!  Let us know how you progress --

[Ricobord]

I have had terrible pain in my ribs for months.  That is one of the symptoms that convinced me I had Lyme.  How many other diseases cause tingling, cognitive problems, balance issues, visual problems, GI problems, tachycardia, and rib pain??  I couldn't wear a bra for six months because I couldn't stand any pressure.  The lower ribs hurt the worst (because they have even more connective tissue than the other ribs--Lyme loves to live in connective tissue).  I am just now getting back into a soft yoga bra a few hours a day.  I also had kidney pain on the left side for a while.  Now, I have no kidney pain, but my kidney function isn't so great.  It should recover with time, though.

An LLMD is your best hope for treatment if you have had it for a while.

Don't forget to request copies of everything from your current doctor.  It is easier to make your own copies for a new doctor than to request copies be sent.  Plus, then you can see the results for yourself, such as which two bands were positive.  Keep us posted!