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

New Topic Post Reply Printable Version
44 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 2:49 PM (GMT -6)   
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)


Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 12/29/2017 4:25 PM (GMT -6)   
Lots of good questions. I'm sure more will be around to answer them all more thoroughly. I can chime in my opinion on a couple.

The "specialist" sounds to me like an ID doc (Infectious Disease). If they require testing prior to appointment I will bet it is not a LLMD (Lyme Literate MD). BIG difference.

ID docs do not believe in persistent Lyme. If you come to them with positive tests they will say - "you had 2 weeks of Doxy, you are cured, go away".

If it's an LLMD they would likely do a thorough evaluation and help you figure out which tests would be best for you and help figure out what is up.

If you think you may have Lyme, I would make an appt with an LLMD right away. People here can help you find one. You can ask here on this thread or start a new thread like "Seeking LLMD in MO/KS" Often, they have loooong waits for first appts FYI.

Not trying to discourage you on the course of action in play, but you may be disappointed like many before you. If insurance is covering it, go for it. Just don't be surprised if they do not take tick born illness seriously. If insurance is paying, I would get as many tests as the doctor will sign off on.

Especially IGenex for the Lyme/ co-infection testing. My LLMD had me test several vitamin levels, hormone levels, and a full metabolic panel. It was like 25 vials of blood sad.

Good luck to you!

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 4:54 PM (GMT -6)   
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)


PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/29/2017 5:39 PM (GMT -6)   
Here are some search resources I used when I tried to find my LLMD. Many LLMDs do not take insurance and that is so sad for all of us. Also, most have a wait list of months. Sad again.

Hope you find one.

/sites.google.com/site/lymedoctors/home

/globallymealliance.org/education-awareness/find-medical-professional/

ilads.org/ilads_media/physician-referral/

/www.lymediseaseassociation.org/ -- Go to Dr. Referral tab

In case you are interested in taking herbs, here are some Buhner recognized herbalists. Going to your local health food store you can probably find a local herbalist.

buhnerhealinglyme.com/resources/herbalists/

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 5:46 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/29/2017 5:50 PM (GMT -6)   
A symptom of mycoplasma is hair loss.

www.lyme-symptoms.com/LymeCoinfectionChart.html

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 5:51 PM (GMT -6)   
Mb244 - I edited your post to change the Dr name to initials only. (Just in case this ID Doc is Lyme literate)
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 6:07 PM (GMT -6)   
Girlie said...
Mb244 - I edited your post to change the Dr name to initials only. (Just in case this ID Doc is Lyme literate)


Thanks Girlies - you have been a tremendous help as I fumble through all this data

May I ask what your symptoms were at the 5 and 14 month mark?

Also - the ID specilaist I mentioned and the link I provided earlier shows that she is currently a co-investigator for a study evaluating for novel and emerging tick-borne pathogens in Tennessee. Would that make her LLMD?

Also - is it a forum rule to not list Docs by name on here? I listed her Vandy CV link just to see if anyone had seen her and what their experience was like ... thats all

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 6:20 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 6:27 PM (GMT -6)   
Mb244 said...
Girlie said...
Mb244 - I edited your post to change the Dr name to initials only. (Just in case this ID Doc is Lyme literate)


Thanks Girlies - you have been a tremendous help as I fumble through all this data

May I ask what your symptoms were at the 5 and 14 month mark?

Also - the ID specilaist I mentioned and the link I provided earlier shows that she is currently a co-investigator for a study evaluating for novel and emerging tick-borne pathogens in Tennessee. Would that make her LLMD?

Also - is it a forum rule to not list Docs by name on here? I listed her Vandy CV link just to see if anyone had seen her and what their experience was like ... thats all


I don't know if she is a LLMD.
A LLMD would not follow the IDSA guidelines - and think chronic Lyme can be treated with a few weeks of doxycycline. And what is leftover after that is PTLDS and you're stuck with the rest of the symptoms.
A LLMD would know to look for coinfections and treat accordingly with more than one antibiotic at a time.
A LLMD would know that testing for Lyme and co's is unreliable and know how to diagnose clinically.


We don't post full names of LLMD's for their protection. They can be targeted and investigated for treating outside the IDSA guidelines so we do what we can to protect them.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/29/2017 6:20:09 PM (GMT-7)


Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 6:59 PM (GMT -6)   
PTLDS?

Post Tx Lyme Dz Symptoms?

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 7:30 PM (GMT -6)   
PeteZa said...
A symptom of mycoplasma is hair loss.

www.lyme-symptoms.com/LymeCoinfectionChart.html


thank you

have you had any experience w this coinfection?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 7:37 PM (GMT -6)   
Mb244 said...
PTLDS?

Post Tx Lyme Dz Symptoms?


Post Treatment Lyme Disease Syndrome.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 12/29/2017 8:07 PM (GMT -6)   
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.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 8:26 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 8:31 PM (GMT -6)   
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.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/29/2017 6:34:21 PM (GMT-7)


Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 12/29/2017 11:54 PM (GMT -6)   
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?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/29/2017 11:58 PM (GMT -6)   
Mb244 said...
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?


The western blot is based on our immune function to mount a response. If our immune system is suppressed (as it often is when we hav Lyme disease) then we often don't produce the antibodies required for a positive.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 12/30/2017 1:24 PM (GMT -6)   
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 smile

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/30/2017 1:31 PM (GMT -6)   
Missouri said...






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 smile


i agree - People will see an ID Doc and not know that their treatment is lacking...and then maybe 6 months later...or longer...we see them here...after their symptoms have gotten worse.

I think if it's caught soon...as within a few weeks...then maybe a non-lyme literate Dr. would be fine IF they were prescribed more than a few days of abx...but time and time again we see too short of treatment for an acute infection that may have been knocked out in the early stage and it's now become a chronic infection.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 12/30/2017 3:16 PM (GMT -6)   
Missouri said...
br />
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 smile


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).
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 12/30/2017 3:44 PM (GMT -6)   
Yeah good call. My experience was the opposite. I had no idea what was wrong with my body. I just knew something was wrong. I was smirked at when I asked my GP about my symptoms and mentioned a tick bite before all the symptoms started. She said we don’t have that here in Missouri, but begrudgingly signed off for a Western Blot.. Why not ELISA? I have no idea. Insurance did not like that.

I asked my GP about LLMD's. She said they are predatory quacks.

That all happened before I knew about the controversy. Luckily I didn't move on and stop reading about tick borne illness.

I am soooo lucky someone on the other forum strongly encouraged me to seek LLMD. If this super awesome person had not done so, I might still be wandering around in my fatigued, twitching, brain fog haze wondering what is wrong with my body.

The CDC website makes it sound like you have to live in certain areas and have a bullseye to have Lyme. My GP said LLMD's are quacks.

Thank god for that special person on the other forum that saved my life.

I hope to give that back to someone else in the same dark place I was in. That’s why I hang around here. I don't feel negativity here. I only see people helping people figure all this crap out.

Are many of us suffering? Absolutely

But I am amazed at the people here especially the mods that give so much of their time to help random strangers.

This is a positive place for me. I hope I can give some of that back.

So, MB244- If you are still there, please feel free to comment or ask any additional questions!!!

Glad you are here

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 12/30/2017 4:41 PM (GMT -6)   
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. yeah
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 1/2/2018 1:48 PM (GMT -6)   
Missouri said...
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 smile



Appreciate the info

What co-infections did you have screened for initially?

Mb244
Regular Member


Date Joined Oct 2017
Total Posts : 30
   Posted 1/5/2018 1:25 PM (GMT -6)   
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 ...
New Topic Post Reply Printable Version
44 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, August 19, 2018 6:20 AM (GMT -6)
There are a total of 2,994,296 posts in 328,120 threads.
View Active Threads


Who's Online
This forum has 161269 registered members. Please welcome our newest member, ChrisRO.
123 Guest(s), 6 Registered Member(s) are currently online.  Details
SantaZia, omega, hopeforbetter, MaggieZaher, SueCAll, ldog