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Post Lyme Disease Syndrome?

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Posted 3/14/2018 2:07 PM (GMT 0)
Was diagnosed with Lyme last June. Was put on 6 weeks of doxy, all seemed good. At that point only had knee pain, throat pain, head pressure and a rash.

Novemberish started throbbing, tingling, heart palps. Disappeared shortly after starting.

January came around and got what I thought was the flu. Then knee pain, head pressure, pain everywhere, twitching, tingling and numbness, heart palps etc. started.


Went to llmd and was put on 30 days doxy, and plaquenil. Everything got worse. Doc said herx, I was worried it was plaquenil side affects. Still didn't feel better after 30 day treatment.


Got two second opinions. Both said it could not be lyme. All blood tests were normal, besides high b12. Lyme was negative besides bands 41, and 58. Babs test was negative. All tests done through quest diagnostics.


Just had an EMG test done, and was diagnosed with neuropathy. Am now on gabapentin. That doc says it sounds like post lyme disease symptom.


He believes no active infection is there because of abx treatment, but its just worsening symptoms.



Is this something that does happen? New and worsening symptoms come over time although active infection is gone?
Posted 3/14/2018 4:05 PM (GMT 0)
Is 30 days all your LLMD would give you?
Or did you decide to stop treatment?

Not even close to enough time

We’re second opinions with LLMDs?

Quest lab isn’t a good place to test for Lyme.
You need to go to a lab that specializes in testing for tickborne diseases.
Posted 3/14/2018 4:16 PM (GMT 0)
Unfortunately, it sounds like you have an active Lyme infection. Probably with coinfections. Please find a reputable LLMD. You are still relatively early in your infection. The sooner you get started, the better. You should be on treatment until you are at least a couple months symptom free.
Posted 3/14/2018 4:32 PM (GMT 0)
You had a bullseye rash plus a positive Lyme test in June, right?

You need to be treated until symptom free. You can’t use follow up WB testing to determine when treatment is done.

If your LLMD is telling you otherwise you need a new Doc
Posted 3/14/2018 6:33 PM (GMT 0)
Yes, bullseye rash and positive in June. Docs seem to think it was a false positive since I am now testing negative.

Not sure where to find an LLMD willing to treat until symptom free. Its also quite unaffordable right now, since the couple I do know of will not accept insurance.

30 days is what the doctor started with...Not sure if he would have extended treatment since I stopped seeing him.

Second opinions were with an infectious disease specialist, a neurologist and a chronic pain specialist.

Just sort of feel at a loss...Its a confusing journey when so many doctors are saying one thing but you feel another way. And friends, family and work not understanding just adds to the stress.

Its like a fight to get people to believe you on top of a fight to get well again....So exhausting.
Posted 3/14/2018 7:28 PM (GMT 0)
Interesting find I came across today. It looks like the IDSA is saying that band 58 is highly specific. They are referring to the IgM, but anyway, interesting none the less:

" Higher predictive values may be possible if the interpretive criteria include more bands that are highly specific (37-, 45-, 58-, or 93-kDa bands)"

https://academic.oup.com/jid/article/179/4/1021/887653
Posted 3/14/2018 7:54 PM (GMT 0)

Taytay459 said...
Yes, bullseye rash and positive in June. Docs seem to think it was a false positive since I am now testing negative.

Not sure where to find an LLMD willing to treat until symptom free. Its also quite unaffordable right now, since the couple I do know of will not accept insurance.

30 days is what the doctor started with...Not sure if he would have extended treatment since I stopped seeing him.

Second opinions were with an infectious disease specialist, a neurologist and a chronic pain specialist.

Just sort of feel at a loss...Its a confusing journey when so many doctors are saying one thing but you feel another way. And friends, family and work not understanding just adds to the stress.

Its like a fight to get people to believe you on top of a fight to get well again....So exhausting.

How did the doctor come to the conclusion that it was a false positive WHEN YOU HAD A BULLSEYE RASH??? A bullseye rash is Lyme Disease. Nothing else is left to say. You don't even need a blood test when you have a bullseye rash because it is so specific for lyme. Not to mention you had and still have lyme symptoms. It makes no logical sense to say that the blood test was false positive. I am sorry, but you have an active borrelia infection. Please seek out an LLMD as soon as possible regardless of if they accept insurance or not. This will cost you a fortune if you wait to see a specialist and you have the chance of becoming disabled in the future. Let us know if you would like a list of specialists near you.
Posted 3/14/2018 8:07 PM (GMT 0)
Can anyone tell me what BLT is? I see it referred to in this forum.
I've had Lyme since September 2001 and like most I took the doxy for 3-4 weeks and was told I was "good-to-go". I believed that. Looking back I now realize all the aches, pains, neuropathy, skin rashes, headaches, increasing sinus issues, were Lyme and co-infections screaming in my face. Only after getting a third bite in 2016 did reality hit me. I've spent the past 21 months crawling up from this Lyme hole. I've come to the realization that for me to get well I need to do it on my own. Unfortunately the medical system, including holistic Lyme literate doctors are really only out to capitalize on this dreaded illness and their primary interest is in lining their own pockets. The latest one I contacted wants $50,000 for a 10 week protocol with no guarantees and the possibility that it may take longer than 10 weeks is more than $50,000. That is in addition to the $450 consultation and $5000 lab bill. When I thanked them for their time and said their treatment plan was financially out of my reach, I was told to reconsider as of course I want to get well, right? The greediness of the medical profession makes me sicker then the Lyme disease.
Posted 3/14/2018 8:32 PM (GMT 0)

Missouri said...
Interesting find I came across today. It looks like the IDSA is saying that band 58 is highly specific. They are referring to the IgM, but anyway, interesting none the less:

" Higher predictive values may be possible if the interpretive criteria include more bands that are highly specific (37-, 45-, 58-, or 93-kDa bands)"

https://academic.oup.com/jid/article/179/4/1021/887653

and they're also saying bands 37, 45 are as well. Those aren't usually included on the Lyme specific band list
Posted 3/14/2018 8:34 PM (GMT 0)

Sheeks175 said...

Taytay459 said...
Yes, bullseye rash and positive in June. Docs seem to think it was a false positive since I am now testing negative.

Not sure where to find an LLMD willing to treat until symptom free. Its also quite unaffordable right now, since the couple I do know of will not accept insurance.

30 days is what the doctor started with...Not sure if he would have extended treatment since I stopped seeing him.

Second opinions were with an infectious disease specialist, a neurologist and a chronic pain specialist.

Just sort of feel at a loss...Its a confusing journey when so many doctors are saying one thing but you feel another way. And friends, family and work not understanding just adds to the stress.

Its like a fight to get people to believe you on top of a fight to get well again....So exhausting.

How did the doctor come to the conclusion that it was a false positive WHEN YOU HAD A BULLSEYE RASH??? A bullseye rash is Lyme Disease. Nothing else is left to say. You don't even need a blood test when you have a bullseye rash because it is so specific for lyme. Not to mention you had and still have lyme symptoms. It makes no logical sense to say that the blood test was false positive. I am sorry, but you have an active borrelia infection. Please seek out an LLMD as soon as possible regardless of if they accept insurance or not. This will cost you a fortune if you wait to see a specialist and you have the chance of becoming disabled in the future. Let us know if you would like a list of specialists near you.

Ditto what he ^^^ said. A bullseye rash is DIAGNOSTIC = Lyme Disease.
Nothing else is needed.

Also, what he said about seeing a LLMD even if they don't accept insurance. It could be WAY more expensive if you don't treat and the symptoms continue to worsen...in addition to new ones.
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