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Lyme test positive - still unsure

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Posted 10/2/2014 8:04 PM (GMT 0)

So I tested positive for Lyme Disease 4 weeks ago (the last of many tests run).  The result of the test that looks for current infection was negative but the "recent or past" test came back positive.  Anyway, for the 4 - 6 weeks prior to that I was experiencing symptoms unlike anything I had ever experienced.  It all started with a weird sensation in my bladder...like it was full, even when just emptied.  Occasionally, there would be mild discomfort, almost like someone was poking my lower abdomen with a dull object (broom handle...nothing sharp).  The frequency of urination seemed to be more often too.  That lasted for almost 3 weeks.  The urologist did a bladder scan and said that it was emptying fine and that it was no distended.  During that time though, I also had:

  • Fatigue - I am super active and it got to the point where all I wanted to do was sit down.  I was tired, but sleep came at a premium sometimes.
  • Night sweats - This happened right before diagnosis and treatment, which I thought was weird, but I would wake up sweating and then have a difficult time falling back to sleep.
  • what I thought was swelling of the lymph nodes in under my arms.  When I would go to the doctor though about it, they said they didn't feel anything. 
  • cold hands - mainly during late morning through the afternoon while at work...no idea why that time of the day, but that's when I noticed it.
  • While my hands were cold, my face would feel flush/hot...almost like I had a fever, but if I did, it was low grade
  • headaches that would take awhile to go away
  • soreness in my ankles and the muscles surrounding them
  • Jaw pain - to the point where it clicks when I open my mouth (the doctor thought TMD and prescribed Naproxen, but it did not help)
  • discomfort on the inner part of my (primarily) left bicep...almost like nerve pain I guess (very hard to explain, but when I mentioned to my doctor, she said possibly arthritis related)

The jaw pain and feeling of tenderness under my arms still persists and I now notice more joint pain in my knees and hips.  My neck also has been giving me problems since I stopped antibiotic treatment, which ended week ago (3 weeks of Amoxicillan - 500mg 3x per day).  Symptoms come and go and my doctor said to give a couple of months before I should expect to feel better.  My doctor is admittedly not as informed on LD as what a specialist would be, but she refuses to refer me to an infectious disease doctor because she believes what was done has solved the issue.  I live in south-central PA...out in the country...so prime area for deer ticks.  Thoughts?  Is this similar to anyone else who was diagnosed with LD?  If so, any good news??? 

Posted 10/2/2014 8:13 PM (GMT 0)
I should have mentioned that the cold hands thing has re-surfaced again too. The last 2 or 3 days I have noticed it. I just need to know whether I should seek a second opinion. I am not sure how reliable the blood tests are and would hate to think that I have one disease, which is supposedly treated and I am good to go, but in reality have something else where time could be of the essence and meanwhile I "wait a couple of months".
Posted 10/2/2014 8:26 PM (GMT 0)
What test were you given? Was it a Western Blot test or an Elisa, do you have the number?

Re: your symptoms
All sound like lyme/tick borne disease related to me. Especially that you feel worse after stopping the antibiotic.

Also-- do no go to that infectious disease doctor! They are mostly not lyme literate.
Posted 10/2/2014 8:32 PM (GMT 0)
Thanks Sarah - I do not have the number. All I was told was that my western blot came back positive. I called my doctor's office and they said they didn't have access to the full results???
Posted 10/2/2014 8:34 PM (GMT 0)
I mean I would definitely pursue treatment. I also had cold hands/bladder issues but I believe those were more a result of a coinfection. There are quite a few lyme drs in PA so you should be able to find one. Message me if you are interested.

Most of us ended up on here because we knew in our guts that the doctors we were currently seeing just didn't get it and we were still sick.
Posted 10/2/2014 8:37 PM (GMT 0)
opugirl - tell me about it...my doctor had me thinking I was nuts for about 4 weeks because every test they did came back negative. But I knew something was wrong...you just know. It was almost like she sheepishly acknowledged that I was right when she called me with those results. I will message you...thanks for the reply!
Posted 10/2/2014 8:38 PM (GMT 0)
I agree that you should pursue treatment from a lyme literate doctor. What your doctor said about waiting a few months for symptoms to go away doesn't make any sense at all.

Check out this thread as well
https://www.healingwell.com/community/default.aspx?f=30&m=1606610
Posted 10/2/2014 8:48 PM (GMT 0)
Wait a minute - I just went down through the list of symptoms and saw canker sores...is this true??? I assume so but if I go back 2 weeks prior to the bladder issues, I recall 2 ulcers in my mouth...I've had ulcers before, but always attributed it to diet. My doctor never mentioned these as LD symptoms and even WebMD doesn't. Interesting.
Posted 10/3/2014 3:26 PM (GMT 0)
Can someone help me understand why I could continue to feel the effects of lyme (joint pain, swollen lymph nodes, fatigue) if I am done with my antibiotic treatment and the bacteria has supposedly been eradicated?  Could it be misdiagnosis?  Are there other diseases that commonly go undiagnosed because of a false positive western blot?
Posted 10/3/2014 3:48 PM (GMT 0)
You still have the symptoms of a Lyme infection because you have not been treated with an effective protocol. Plain and simple.

The cold sores & mouth ulcers are likely from a type of herpes infection - many here get them. When the immune system can't keep the herpes virus under control, we get those sores. Using larger doses (3,000 mgs a day) of L-lysine will likely clear them up quickly. Our immune systems can only tackle so many things at one time, so often symptoms of viruses that are normally kept under control will show up.

If you had symptoms of pneumonia and you finished all the abx you were supposed to, yet still had symptoms, doctors wouldn't hesitate to continue your prescription. Lyme disease is the only infection that doctors do this with. You need to find another doctor, hopefully you will use a LLMD (Lyme Literate Medical Doctor) that has been trained by ILADS (International Lyme and Associate Diseases Society) standards - which can be found here:www.ilads.org/lyme/treatment-guideline.php

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

​ You can also now email TBDA (Tick Borne Disease Alliance) at [email protected]​
​ and ask for LLMD referrals also.
​
Posted 10/3/2014 6:45 PM (GMT 0)
Hey all - thanks so far for the feedback and advice...appreciate all of it. I did call the doctor's office again to see if I could get the results of the blood work and must have talked to the right person today. So the IGG came back with 6 of the 10 bands reactive. Those 6 were 18,39,41,58,66,93. Non-reactive was 23,28,30,45. Should I feel pretty comfortable with the diagnosis???

I'll be honest, before the LD diagnosis, I feared HIV. Almost 8 months ago I had come up on an accident where a pedestrian was hit. I sorta had to hold the guy down because he was trying to get up. In doing so, I got his blood on me. Now, I know that a whole lot of things would have had to happen in order for me to get HIV that way (he would have to have it, I would have to have an open cut, blah blah blah), but once the thought enters your mind, you're hooked. So when my symptoms started to show, especially the lymph nodes, I freaked out....big time. I was tested for HIV between 6 and 7 months (one of the many tests they did prior to diagnosing LD) and it came back negative, as did Hepatitis, thyroid problems, WBC counts were all fine, etc. So that's where I come from way out in left field.
Posted 10/3/2014 7:18 PM (GMT 0)
Hi bls,

I sent you an email. Do you know what your IgM results were?

~beth
Posted 10/3/2014 7:21 PM (GMT 0)
IGM were all non-reactive for 23,39,41. That's all the doctor's office told me. Are there other bands they would look at?
Posted 10/3/2014 7:40 PM (GMT 0)
Well not according to labcorp but Igenex looks at 9 bands I believe. It isnt a big deal I was just curious.
Posted 10/3/2014 7:42 PM (GMT 0)
OK - sent an email back to you. thanks for the insight!
Posted 10/4/2014 7:27 PM (GMT 0)
Yes, with test results like that and your symptoms you can feel confident that you have Lyme disease and need treatment.
Posted 10/30/2014 2:42 PM (GMT 0)
Sorta out of left field here, but are hemorrhoids generally associated with Lyme? The reading I've done leads me to believe no, but that some co-infections may lead to it. Anyone have experience with it?

I've been off antibiotic (Amoxicillin 500 mg 3x per day) for over 5 weeks and have felt pretty good...but recently the bladder discomfort (not as bad as when I originally had it) has returned and yesterday I had the flush feeling in the face where you just feel hot or have a fever, but don't.
Posted 10/30/2014 5:49 PM (GMT 0)
Not really, but nothing surprised me any more with these infections! They 'work on' the weak points in the body.

Are you getting back into treatment?
Posted 11/2/2014 1:26 AM (GMT 0)
Traveler - I was told by my doctor, sternly I might add, that she does not want to see me again until the new year...that it takes time for this thing to run its course.  So I wait for 2 months while symptoms seemingly creep back into my life.  She basically refused to refer me to a specialist and without the referral I would end up having insurance deny the claim...any suggestions?

I've noticed:

  • the lower abdominal pain/discomfort (though not as bad as before)...its a very dull almost constant feeling
  • the pain in my left arm (like I have a pulled muscle or something) where the bicep, tricep and deltoid would come together.  I notice it most when I lifting something...not from the floor, but maybe from a shelf to a higher or lower location.  Or when I use a towel to dry my back after getting out of the shower.  It would seem to be when the muscle is flexing I guess
  • my face feeling beet red and hot
  • my right ankle hurts
  • lower back pain (sorta new I guess)
  • dull neck pain
  • my eye sight...get this...is better.  I was a -1.50 presription and a visit 2 days to the eye doctor revealed I am -.75 now.  I noticed myself squinting when I look at the computer and thought for sure it was due to eye sight getting worse.  Turns out its better and my eyes were straining because the prescription was too strong...go figure

I think that's it.  I am going to call in a week or so I guess and press her for a sooner appointment.

Posted 11/2/2014 4:58 PM (GMT 0)
Remember that symptoms do change around. I've had my eyesight get worse, then improve over the years all requiring a change in my prescription for my glasses - this of course doesn't count the blurry eyes, spots, wavy lines and all the other fun stuff that can go on.

Don't you just hate that arm pain? I never know what to call it! I can't hold my hands above my head for any real amount of time. I can reach up and get something most days, but to hold my arms above my head creates too much pain. I've wondered if it wasn't a nerve that was inflamed in there causing that pain.

So you had a positive Lyme test and your doc said to not come back until after the first of the year? You shouldn't ever go back if that's the case! Find another doctor, one that will believe the test results and not have their own agenda.

Have you had any treatment yet?
Posted 11/3/2014 3:51 PM (GMT 0)
Traveler - I did a 3 week round of Amoxicillin (500 mg 3x per day).  That was 6 weeks or so ago.  I did get an overall feeling of being sick while on the antibiotic and my joint/muscle pain did feel worse.  After doing reading I attributed it to herxes and figured the treatment was doing what it was supposed to do.  What test can be done post-treatment to see if the bacteria is gone?
Posted 11/3/2014 4:03 PM (GMT 0)
The Amox can still kill some bacteria, it just isn't "strong" enough to keep up the "kill power" without adding in Probenecid.

Because there will always be some bacteria left over in certain parts of the body (although it will be inactive and not able to produce an infection in most cases of real healing), there is no test that is in use now that I have been convinced that can tell us that the infection is no longer active/enough bacteria have been killed to keep it from relapsing.

The best 'tool' we have is still treating 2 or 3 months past the resolution of all symptoms, come off the treatments and see if symptoms return. Many find that although a few minor symptoms can return, they are minor in severity, and resolve in a few months.

But, I'm the "Doubting Thomas" type thanks to what I've been through. I have to see that there have been good results that have been documented - and more than just a small handful of people.
Posted 11/3/2014 4:11 PM (GMT 0)
Thanks Treveler - its funny (not haha funny, ironic I guess) that you say that.  There's an older lady that I go to church with that's been diagnosed with Lyme and she was on 6 months of doxy and the doctor retests her every time she goes for a visit.  So what exactly is she testing for?  If I understand correctly, the western blot tests for antibodies, which you'll always have.  So of course the test is going to come back positive every time...no?  She looks at me funny when I tell her that my doctor hasn't been doing follow-up testing.

Posted 11/3/2014 4:16 PM (GMT 0)
Many patients still completely believe in their doctors, so if the doctor is misinformed, then the patient has the wrong information. This is the number one reason why I check up on just almost every bit of information I get from a doc. It's not that I don't trust them (well, kind of), it's more that I realize that they are human as well and make mistakes and can be ignorant in many areas without realizing that the information has changed!

Retesting like what you just described is nothing more than a waste of money for us and our insurance co and a boon for the lab.
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