So overwhelmed, please help.

Jcm2018 said...
Another question for anyone still there!
I called my dr to ask about possibly retesting lyme because I’m concerned about one positive band (anyone knows if false positive is common for specific band like 23?) and she said a positive igm band could in theory indicate a new infection, so there was no way a less than a month old lyme infection would cause neurological symptoms. Does that sound generally accurate? Should I find a new pcp who doesn’t dismiss everything? Guessing she won’t want to do Abx. Said we can discuss next steps in person.

No band 23 isn’t a false positive - it’s specific to lyme.

And yes an infection a few weeks old can cause neurological symptoms.
You need a LLMD

Thank you, I watch my son all day and my husband is away for work, hopefully after sons bedtime I can do some more research on llmds!

I personally would not wait to see an llmd. I would call ASAP and make appointment.

I was in a similar situation like yours and went with out any doxy/antibiotic from my primary care giver, three different Emergency room visits at three different hospitals s I was presenting with stroke like symptoms, extreme heavy numbness, waves of numbness and many other Lyme and coinfection symptoms. They all were wrong. I dis have Lyme and multiple co-infections.

My one band that was positive was 41. They said cant be Lyme. Need more bands, that is bull.....t.

Went to top neurologist/infectious disease specialist at top Boston Ma area hospital. She also said no Lyme as I continued to go downhill.

Went to 2nd top neurologist another top clinic near Burlington ma. She would only confirm I didnt have Ms, Lupus and other rare disorder/disease. No abx yet to help me.

I had two known tick bites. No one would listen. I really believed I would die from the horrific neuro symptoms I was having.

Only after seeing an llmd and starting antibiotics and then herbals did I start to get rid of my worst symptoms.

It is always important to rule out other serious illness, but when you have had a known tick bite and a positive band they should treat you on the side of caution so you dont get chronic Lyme or have these nasty co-infections that most here have.
I asked for help and ABX a year before I ended up so bad I was hospitalized 3 times. No help and so much time wasted. So now 2 yrs later , still treating and trying to get well.

Get some help somehow. Dont give these infections time to ruin your life.
I feel for you and understand what you are facing, please get help.

I also urge you to not stall out on this....if you want to see the other specialists...you can still make an appt. with a LLMD...one doesn't exclude the other.
What goshawk went through didn't have to happen...if she had only gotten help sooner...if the Dr's would have listened to her....

Band 23 is lyme.

goshawk...thanks for sharing. I didn't realize how bad it was for you. I'm so sorry...that must have been a scary time for you.

These stories still tear me up - it's just so very wrong.

i will call a few tomorrow to discuss payment options. Neurologist is Friday and I don’t have a babysitter until then, maybe one can squeeze me in Friday after that. Thanks everyone. It is so frustrating that something so glaring is overlooked so often.

I just think it’s the timing of having a bite, and then experiencing all this 10 days later. If it’s not lyme, it still seems like something in the tickbite triggered something to happen. I’ve always been healthy. I think the doctors see it the other way, like you got a bite and ONLY 10 days later you get all these symptoms? Not likely bite related. Researching LLMD’s now.
Quick question- Will the llmd order a retest, (or can they use the LabCorp results?) also, if retest is negative all around, what are the indications? (Is there a transition period between igm and igg where nothing would show? Or should something be there regardless? I was bitten 4 weeks ago now. (Known bite.. have had SO many ticks, indoors and outdoors since June 😫)

Jcm2018 said...
Another question for anyone still there!
I called my dr to ask about possibly retesting lyme because I’m concerned about one positive band (anyone knows if false positive is common for specific band like 23?) and she said a positive igm band could in theory indicate a new infection, so there was no way a less than a month old lyme infection would cause neurological symptoms. Does that sound generally accurate? Should I find a new pcp who doesn’t dismiss everything? Guessing she won’t want to do Abx. Said we can discuss next steps in person.

no don’t find a new pcp now - find a LLMD first - that’s Job 1.

Don’t listen to what she says because she really has no clue when it comes to Lyme disease.

The LLMD May not require another lyme test.
I wouldn’t worry about the IgM vs IgG.

I was IgM positive 15 months after symptoms started.

Jcm2018 said...
I have a neurologist appointment tomorrow and I am going to question heavily about Lyme. My husband is taking a half day so we are going to call around once we are out of that appointment. Today my right knee started feeling fatigued. I was referred to a natural healing center near me via a Facebook group, but there is no MD on site so no rx, I’m guessing I should start elsewhere. I really appreciate all the info. It’s so hard having doctor with no clue. I have lost so much faith in traditional medicine.

Most regular docs are still clueless - it not just your Dr.

Mine knows nothing about lyme but I must say she has been supportive and she acknowledges she’s ignorant when it comes to lyme.

That’s about as good as it gets here in my neck of the woods.

You can apply tea tree essential oil mixed w/lavendar essential oil several times daily on the bite mark! It really worked on mine back in July 2015!

I hope you can get in to see an LLMD, or LLND!

Good morning,
Just sending good thoughts your way for your neurologist appointment today.

If you have considered testing through Igenix labs for Lyme and co-infections and the Neurologist is willing to sign the blood work request that may be helpful also.

Just remember it takes about 6 weeks after a bite for the antibodies to show.

You can print out the form at Igenix on line I believe.

Take care

Jcm2018 said...
Thanks! Just to clarify, I had an igm 23 positive about 2.5 weeks after the bite. Is that unusual timing for that bite? I don’t fully understand the timing for testing. It’s been 4 weeks now. I had symptoms pop up 10 days after the bite. I’m sorry I keep asking similar questions, I keep seeing conflicting information.

From what I've read it often takes longer than 2.5 weeks for antibodies to develop...but they can develop that quickly.

So, you're wanting to retest and try to get a positive result... If it's important to you...then do it. You need a Dr. to sign the lab req.