Going to see MD (Finally) & I would like advice on testing etc ...

So I have had trouble with insurance and its finally been resolved. I am 3 months post-tick bite and I have an appointment next week with a non-lyme trained GP. Its not ideal but there is only one specialist in my area that I have found that will take my INS and she requires a GP referal (as well as the testing etc he has to do before she will see me)

I have a friend who is a CRNA and she advised that I have my *SED Rate and CRP* tested. She thinks I need to have my "inflammation markers tested" .... i am unfamiliar with this but will ask the GP to do so.

That is actually why i am coming to the board for advice... if I am unaware of these test - what else am I in the dark about? What tests should I insist he perform?

I am assuming I will get ...

- standard Lyme blood test
- co infection blood test? Specifics?
- thyroid test?
- inflammation panel?
- standard blood work?


_____________________________

Just to recap everyone - I found a TINY tick on my leg Aug 22. didnt really think too much about it. I was working and had a few bug bites and this little tick looked like it was barely attached so I assumed it was a very very new bite. Honestly I had heard about Lyme but never given it much thought.

So over the next few weeks I developed Headaches and a stiff neck. It was summer so I thought maybe the headaches were sinus/pollen/allergies, but the stiff neck was very unique. At first it was "just a crick" I thought, but it quickly escalated into the worst, most nagging stiff neck I could imagine. Wasnt sure what was going on. That and the headaches seemed to get worse for 3 wks.

Around Sept 10 or 11 I went to urgent care because I woke up at 3am with some of the worst chills and headache I have ever had. Felt like a hangover mixed with flu.

The urgent care was accommodating and gave me Doxy ABX but they literally googled Lyme on the exam room PC to diagnose me. As long as I had ABX and started what I felt like was a good step in preventing the possible Lyme progression I was happy.

Then I started doing my homework (inlcding coming here) and realized this was a serious disease and that perhaps the 100 Mg twice a day was not sufficient.

So I took 200mg/day until Sept 24th. (2 wks)

Then I went back to UC to get a refill on my "lost" Rx ...

Oct 3 - started 200 mg/day again and did that for one week, and was then advised (on here) that the dose was weak so I upped it to 300 or 400/day for 5 days...ending Tx around Oct 15.

I still feel off and but I don't have a lot of specifics other than some afternoon fatigue, some intermittent headaches, and aching in my joints in my hands (where fingers meet hand) and in my feet (where the toes meet the foot). Odd that the similar joints in both hands and feet hurt in the same manner - i am assuming this is caused by Lyme as I have never had joint issues before.

one of the things that has bothered me the most is my severe shedding ... i cannt figure out if this is due to the disease or if its due to the Abx. I have read there is a small chance Lyme causes hair loss, but I have also read a LOT of testimonials about Doxy causing dramatic hair loss when taken in high doses. I have a lot of hair but it has been falling out like crazy (all over) especially when I first began Abx months ago

Anyone have any idea what can cause this? I have tried to find answers
- is it the Abx?
- Is it the Dx itself?
- Could it be a coinfection?
- Or could it be an autoimmune reaction my body is having to the Dz and my body is attacking my hair follicles?

Post Edited (Mb244) : 12/29/2017 1:04:50 PM (GMT-7)

Well you are correct - as far as I can tell she is not a LLMD. However when I was digging into the long list of providers in my area that INS will cover it was a complete farce and an endless run around...

The docs I inititially sought out were not in network, then the ones in network (who are ID docs) didnt treat lyme ... so they steered me towrds the only "lyme doctor they knew of in the area" who is Dr KB and she is an ID doc but I have not seen her pop up on any lists

Its so strange - I was seeking LLMD in my area and GirlieGirl was nice enough to send me a list but the list isnt long and they seem to be few and far between geographically. Sadly I discovered one had deceased (lyme) when I tried to set an appt with her. Another LLMD doctor in my area could not see me for 4 + months and that was just too long

So ... i am going to see this GP and tell him I want to see B It may not do anything and you may be right - she may dismiss my dz entirely.

I do appreciate the info on the tests.

Post Edited By Moderator (Girlie) : 12/29/2017 3:49:45 PM (GMT-7)

Mb244 said...
So I have had trouble with insurance and its finally been resolved. I am 3 months post-tick bite and I have an appointment next week with a non-lyme trained GP. Its not ideal but there is only one specialist in my area that I have found that will take my INS and she requires a GP referal (as well as the testing etc he has to do before she will see me)

I have a friend who is a CRNA and she advised that I have my *SED Rate and CRP* tested. She thinks I need to have my "inflammation markers tested" .... i am unfamiliar with this but will ask the GP to do so.

That is actually why i am coming to the board for advice... if I am unaware of these test - what else am I in the dark about? What tests should I insist he perform?

I am assuming I will get ...

- standard Lyme blood test
- co infection blood test? Specifics?
- thyroid test?
- inflammation panel?
- standard blood work?


_____________________________

Just to recap everyone - I found a TINY tick on my leg Aug 22. didnt really think too much about it. I was working and had a few bug bites and this little tick looked like it was barely attached so I assumed it was a very very new bite. Honestly I had heard about Lyme but never given it much thought.

So over the next few weeks I developed Headaches and a stiff neck. It was summer so I thought maybe the headaches were sinus/pollen/allergies, but the stiff neck was very unique. At first it was "just a crick" I thought, but it quickly escalated into the worst, most nagging stiff neck I could imagine. Wasnt sure what was going on. That and the headaches seemed to get worse for 3 wks.

Around Sept 10 or 11 I went to urgent care because I woke up at 3am with some of the worst chills and headache I have ever had. Felt like a hangover mixed with flu.

The urgent care was accommodating and gave me Doxy ABX but they literally googled Lyme on the exam room PC to diagnose me. As long as I had ABX and started what I felt like was a good step in preventing the possible Lyme progression I was happy.

Then I started doing my homework (inlcding coming here) and realized this was a serious disease and that perhaps the 100 Mg twice a day was not sufficient.

So I took 200mg/day until Sept 24th. (2 wks)

Then I went back to UC to get a refill on my "lost" Rx ...

Oct 3 - started 200 mg/day again and did that for one week, and was then advised (on here) that the dose was weak so I upped it to 300 or 400/day for 5 days...ending Tx around Oct 15.

I still feel off and but I don't have a lot of specifics other than some afternoon fatigue, some intermittent headaches, and aching in my joints in my hands (where fingers meet hand) and in my feet (where the toes meet the foot). Odd that the similar joints in both hands and feet hurt in the same manner - i am assuming this is caused by Lyme as I have never had joint issues before.

one of the things that has bothered me the most is my severe shedding ... i cannt figure out if this is due to the disease or if its due to the Abx. I have read there is a small chance Lyme causes hair loss, but I have also read a LOT of testimonials about Doxy causing dramatic hair loss when taken in high doses. I have a lot of hair but it has been falling out like crazy (all over) especially when I first began Abx months ago

Anyone have any idea what can cause this? I have tried to find answers
- is it the Abx?
- Is it the Dx itself?
- Could it be a coinfection?
- Or could it be an autoimmune reaction my body is having to the Dz and my body is attacking my hair follicles?

Just an FYI - My SED rate and CRP were fine - didn't show inflammation.
If you're testing with your insurance, then get Lyme and coinfections tested. You want to get the Lyme WB IgM and IgG done. (Not just the Elisa or IFA)

But you may not get results showing positive - be prepared for that.

But you had a known tick bite followed by symptoms - that's all you need to treat.
It's still a fairly recent bite - I wouldn't waste any time (as in months) getting properly treated..even if you need to travel to a nearby State. You don't want to continue to add symptoms...it gets harder to treat.

Three months after my symptoms started I still only had a handful - but 14 months later? I had many more.
In fact one of my worst, and stubborn symptoms came on just about at the 5 month mark.
Had I treated sooner, perhaps I wouldn't have developed it.


Lyme can definitely cause hair loss.

Mb244 - I edited your post to change the Dr name to initials only. (Just in case this ID Doc is Lyme literate)

5 month mark - the internal vibrations started - adding to the frozen shoulder and left shoulder blade/arm/hand weakness and pain, tremors, weight loss, sensation of lump in my throat, anxiety and bouts of depression, feelings of despair, undigested food coming out in my p--p, urinary urgency, body wide fasciculations, rib pain

14 month mark - off balance, POTS, joint pain, muscle pain, swollen clavicle lymph node, neck pain, bakers cysts on both knees, sleep apnea, sweating, always cold, knee pain, shoulder pain, excruciating tailbone pain, head pressure, foot pain, finger joint pain, eyelashes falling out.

I'm sure there's more - don't have my list handy.

PTLDS?

Post Tx Lyme Dz Symptoms?

Mb244 said...
PTLDS?

Post Tx Lyme Dz Symptoms?

Post Treatment Lyme Disease Syndrome.

BabsBunny said...


So please don’t get too discouraged by sweeping statements like “GPs or ID doctors don’t believe in Lyme.” While it’s true most are in the dark, not all are necessarily. If you’ve been recommended this one to treat Lyme, there’s hope that they know how to treat Lyme but are keeping on the down low to avoid insurance lawsuits.

Lyme is friggin’ expensive. Some people simply can’t afford to search out a designated LLMD. Please don’t discourage these people. Arm yourself with the knowledge and be prepared to be misunderstood or misdiagnosed, but don’t write off the only doctor you can afford.

Lab Corp, Quest, and MDL do run coinfections tests. If your insurance doesn’t cover iGenex, don’t despair. They’re the biggest name but their tests still aren’t all that reliable. A false negative occurs just as often with iGenex, but you’ve paid a lot more for nothing.

Positive thinking is huge, and I’m so saddened to read so many posts telling people they’re doing it wrong or they’re not going to get anywhere.

Best of luck with your insurance.

LLMD just means lyme literate Dr. Of course it can be an ID Dr. That's what Dr. Jemsek is - an ID specialist but he is also lyme literate.

If your 'regular' GP is lyme literate, then they're a LLMD, and will treat appropriately.

Our 'list' of LLMD's isn't from ILADS...it's a list that has been gathered over the years by another Forum Mod.
Sometimes, we end up removing some names...even if they are self-proclaimed lyme literate.
If they follow IDSA - for instance...and only treat for a few weeks and don't consider co-infections...then they're not lyme literate.

Girlie said...

BabsBunny said...


Lab Corp, Quest, and MDL do run coinfections tests. If your insurance doesn’t cover iGenex, don’t despair. They’re the biggest name but their tests still aren’t all that reliable. A false negative occurs just as often with iGenex, but you’ve paid a lot more for nothing.

Positive thinking is huge, and I’m so saddened to read so many posts telling people they’re doing it wrong or they’re not going to get anywhere.

Best of luck with your insurance.

Yes, if your insurance is covering - then get the tests done - as I stated in a previous post:
"If you're testing with your insurance, then get Lyme and coinfections tested. You want to get the Lyme WB IgM and IgG done. (Not just the Elisa or IFA)

But you may not get results showing positive - be prepared for that."

Since insurance is covering - may as well get as many tests as possible.

A false negative doesn't occur as often with Igenex. They do specialize in tick-borne disease testing..and tests are more sensitive. We see more positives, or at least positive lyme specific bands with the Igenex testing.

And we do tell members to find a lyme literate Dr. because too often we have people who didn't know better...and stayed with their GP and got the two weeks of abx...and were told there's no more that can be done. Then years down the road, they post here.
But, lyme literate - just means they know how to treat lyme and co-infections...that's what you want/need.

Is there any reason why I have read that so many people get false negative results when they obviously have lyme?

BabsBunny said...
I just wanted to post a little encouragement: my first doctor was a Lyme specialist, best and maybe only one in the area, but still ran a family practice and thus followed insurance guidelines as best he could. He didn’t carry the name “LLMD”. But he knew what to do.

So please don’t get too discouraged by sweeping statements like “GPs or ID doctors don’t believe in Lyme.” While it’s true most are in the dark, not all are necessarily. If you’ve been recommended this one to treat Lyme, there’s hope that they know how to treat Lyme but are keeping on the down low to avoid insurance lawsuits.

Lyme is friggin’ expensive. Some people simply can’t afford to search out a designated LLMD. Please don’t discourage these people. Arm yourself with the knowledge and be prepared to be misunderstood or misdiagnosed, but don’t write off the only doctor you can afford.

Lab Corp, Quest, and MDL do run coinfections tests. If your insurance doesn’t cover iGenex, don’t despair. They’re the biggest name but their tests still aren’t all that reliable. A false negative occurs just as often with iGenex, but you’ve paid a lot more for nothing.

Positive thinking is huge, and I’m so saddened to read so many posts telling people they’re doing it wrong or they’re not going to get anywhere.

Best of luck with your insurance.

I see where you are coming from here, but I still stand by my first post.

I explicitly said I do not want to discourage their plan in place, and take advantage of whatever insurance will pay for.

Unfortunately for me personally I wasted several hundred dollars on my regular GP, Opthamologist, and Neurologist and wasted a month or more of time. I have insurance, but it’s crap and they would not cover the first Labcorp Western Blot, special eye exam, or neurologist appointment.

My insurance company sure does not like to pay for Lyme related items. They do cover other things pretty well. The original poster may be surprised by some of the bills that show up in the mail as I did when I found out that Western Blot was not covered without positive ELISA. Opthamologist was not covered because it was not a “standard” eye service exam. Neurologist consultation would have been covered, but not any testing that would have been needed.

If not to save money, I also hoped maybe to save the original poster time. I still think it would be wise for them to get in the list with an LLMD if they think they have Lyme.

I personally would not bet my life on the long odds that a GP and an ID doc will take tick borne illness seriously and treat the patient accordingly. It’s almost a sure bet that an LLMD will thoroughly investigate all avenues.

Knowing what I know now- if my body went haywire after a tick bite, I would get to LLMD as soon as possible. Same for if my family or friends had a tick bite and their body went haywire.

Just trying to help. Not be negative

Missouri said...
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I see where you are coming from here, but I still stand by my first post.

I explicitly said I do not want to discourage their plan in place, and take advantage of whatever insurance will pay for.

Unfortunately for me personally I wasted several hundred dollars on my regular GP, Opthamologist, and Neurologist and wasted a month or more of time. I have insurance, but it’s crap and they would not cover the first Labcorp Western Blot, special eye exam, or neurologist appointment.

My insurance company sure does not like to pay for Lyme related items. They do cover other things pretty well. The original poster may be surprised by some of the bills that show up in the mail as I did when I found out that Western Blot was not covered without positive ELISA. Opthamologist was not covered because it was not a “standard” eye service exam. Neurologist consultation would have been covered, but not any testing that would have been needed.

If not to save money, I also hoped maybe to save the original poster time. I still think it would be wise for them to get in the list with an LLMD if they think they have Lyme.

I personally would not bet my life on the long odds that a GP and an ID doc will take tick borne illness seriously and treat the patient accordingly. It’s almost a sure bet that an LLMD will thoroughly investigate all avenues.

Knowing what I know now- if my body went haywire after a tick bite, I would get to LLMD as soon as possible. Same for if my family or friends had a tick bite and their body went haywire.

Just trying to help. Not be negative

Yeah, sorry, I didn’t mean that to sound aimed at you specifically. In general, there’s a lot of negativity. In my experience, I learned all about the Lyme controversy by researching from the beginning and watching “Under Our Skin”. So to me it was obvious there was in uphill battle, and I am still frustrated beyond measure that my other docs (eye, dentist, OBGYN, etc) know NOTHING about the effects of Lyme and Co. I didn’t need this forum to scare me into reality, I needed this forum to comfort me because the reality was so scary. So from my perspective, people are already scared and should come here for help.

But not everyone is me. Some people start here, and while that would be fine if they worked through the New to Lyme thread, I think many don’t. So I suppose they need to be taught about the controversy. And going through all that again just brings me down.

I also remember as a new Lymie being terrified of what was coming and being angry at doctors before I even stepped in the door. My negative attitude held me back when in fact, I’ve been fortunate enough to have pleasant surprises, and cooperative insurance for the most part. It’s not all gloom and doom. Yes, some people’s reality is very different. But if you have no money, you have no money. I’d hate for someone to come here for help and be met with, “well if you can’t afford an LLMD, you’re screwed.”

There’s a balance necessary, and when it goes one way, I try to pull it the opposite way. Not always productively, but I’m human. (Well... 20% parasite at this point).

Yes, it's true, we all come here with different backgrounds/stories and at different stages in our journey.


The bottom line is we are all here supporting each other - and that is wonderful!


I have also been helping Mb244 off the forum via emails. We're a dedicated group here.

So ...

The appt went as most on here said it would

The doctor was a nice guy and seems knowledgable and had nice bedside manner, but he wanted to look for any other casue other than Lyme

He told me if I took antibiotics within 3 weeks of a bite (i took two - but they were short/low dose, see original post) then there is no lyme in my body. The Doxy killed it all.

He was open to the idea that I could have Lyme related after effects since he said the migranes/stiff neck/flu+hangover symptoms did vibe with what he would expect a person with Lyme to possibly present with.... but the extremity joint issues I have had recently (small joint aches in hands/feet) seemed to steer him towards another culprit ... and he wants me to see a rheumatologist (RA/Lupus/etc). He opted not to test my Testosterone levels (low energy) since it wasnt first thing in the morning, but he is running an inflamation panel and complete blood panel

I had a body exam
Blood drawn at his office
and x rays of hands and neck

Awaiting blood work results now ...