Aa
Could this be Lyme?
Hello,
My girlfriend has been experiencing various symptoms for over a year now and has seen several doctors (neurologists, infectious disease specialists, headache specialists, chiropractors, cardiologists, etc) and still has yet to be diagnosed with anything nor is she seeing any real improvement. We decided to ask the collective intelligence of the internet, and if anyone has any information or advice that might help improve her quality of life, we would be very very grateful.
Her symptoms are:
Extreme headaches - almost always at night and frequently during the day. They get worse at night.
Dizziness - all the time but worse at night. She says she feels drunk all the time. Seems to get worse in rooms with fluorescent light or in big, open spaces.
Extreme sensitivity to light and sound - She wears prescription glasses to reduce the light and she often requests that we sit in total darkness and speak quietly. She can't bear being outside when it's bright out (especially when the snow reflects the sun.)
Fatigue and trouble sleeping.
Vertigo.
Tension/pain in her neck - It seems to be the base of her skull/spine and a little lower. She recently has said that her headaches seem to radiate from this area.
General out of body feeling - She says she feels like she's in a dream or that the world around her isn't real. (not in a stoner/existentialist sort of way but in a legitimate physical way.)
Occasional migraines - almost only at night.
Neck and shoulder tension.
Tinnitus and clogged feeling in ears.
All of these symptoms seem to worsen as the day progresses, especially the headaches.
Other symptoms that might be related:
Depression and anxiety - and said she used to cry nearly every day. This started a few months or so before the headaches started.
Rapid heart rate - Sometimes it's very fast, but it is always noticeably fast. Cardiologist says everything looks normal.
Acid reflux disease.
Possible lactose intolerance.
Also, this may not be relevant, but around the same time these symptoms started appearing she started feeling pain whenever pressure is applied to her clitoris. (Sorry if TMI.)
She says that shortly before the headaches began she experienced a flu-like sickness (fever, cough, body aches) for a week. She took ZzzQuil to help sleep and had a constant head-rush feeling the next day. She got horrible vertigo that same day and went to the ER where she received a CAT scan that came back clear.
She has been tested for Lyme Disease, Lupus, various auto-immune disorders, and has had a few MRI's of her brain and neck. Everything has come back negative/normal. Doctors have no idea what is causing her symptoms.
Going to the chiropractor helps relieve some of her neck pain and headaches, but the results are short-lived (I'm taking mere minutes.) Osteopath seems to have similar results.
Alcohol makes the headaches and dizziness worse. Marijuana makes the dizziness worse and her heart rate really fast (and doesn't seem to help her headaches at all.) She never used either regularly and has stopped using both entirely.
She is also a vegetarian with a variable diet (ranging from big, strictly organic meals to junk food) but she usually eats well.
The only thing that has really helped her so far has been low dose amitriptyline (25mg/day). It greatly reduced her headaches, but it had several side effects and she eventually stopped using it.
Any information that could help us would be greatly appreciated.
My girlfriend has been experiencing various symptoms for over a year now and has seen several doctors (neurologists, infectious disease specialists, headache specialists, chiropractors, cardiologists, etc) and still has yet to be diagnosed with anything nor is she seeing any real improvement. We decided to ask the collective intelligence of the internet, and if anyone has any information or advice that might help improve her quality of life, we would be very very grateful.
Her symptoms are:
Extreme headaches - almost always at night and frequently during the day. They get worse at night.
Dizziness - all the time but worse at night. She says she feels drunk all the time. Seems to get worse in rooms with fluorescent light or in big, open spaces.
Extreme sensitivity to light and sound - She wears prescription glasses to reduce the light and she often requests that we sit in total darkness and speak quietly. She can't bear being outside when it's bright out (especially when the snow reflects the sun.)
Fatigue and trouble sleeping.
Vertigo.
Tension/pain in her neck - It seems to be the base of her skull/spine and a little lower. She recently has said that her headaches seem to radiate from this area.
General out of body feeling - She says she feels like she's in a dream or that the world around her isn't real. (not in a stoner/existentialist sort of way but in a legitimate physical way.)
Occasional migraines - almost only at night.
Neck and shoulder tension.
Tinnitus and clogged feeling in ears.
All of these symptoms seem to worsen as the day progresses, especially the headaches.
Other symptoms that might be related:
Depression and anxiety - and said she used to cry nearly every day. This started a few months or so before the headaches started.
Rapid heart rate - Sometimes it's very fast, but it is always noticeably fast. Cardiologist says everything looks normal.
Acid reflux disease.
Possible lactose intolerance.
Also, this may not be relevant, but around the same time these symptoms started appearing she started feeling pain whenever pressure is applied to her clitoris. (Sorry if TMI.)
She says that shortly before the headaches began she experienced a flu-like sickness (fever, cough, body aches) for a week. She took ZzzQuil to help sleep and had a constant head-rush feeling the next day. She got horrible vertigo that same day and went to the ER where she received a CAT scan that came back clear.
She has been tested for Lyme Disease, Lupus, various auto-immune disorders, and has had a few MRI's of her brain and neck. Everything has come back negative/normal. Doctors have no idea what is causing her symptoms.
Going to the chiropractor helps relieve some of her neck pain and headaches, but the results are short-lived (I'm taking mere minutes.) Osteopath seems to have similar results.
Alcohol makes the headaches and dizziness worse. Marijuana makes the dizziness worse and her heart rate really fast (and doesn't seem to help her headaches at all.) She never used either regularly and has stopped using both entirely.
She is also a vegetarian with a variable diet (ranging from big, strictly organic meals to junk food) but she usually eats well.
The only thing that has really helped her so far has been low dose amitriptyline (25mg/day). It greatly reduced her headaches, but it had several side effects and she eventually stopped using it.
Any information that could help us would be greatly appreciated.
"can you tell me where you got the info about the cracking neck being a big telltale sign?"
Burrascano has it in his list of symptoms for Lyme disease.
Burrascano has it in his list of symptoms for Lyme disease.
"But cracking joints/mainly neck is a BIG tell tale sign of Lyme. "
That's one of my (many) symptoms but tested Neg on the Canadian (oh-so-reliable...NOT!) Elisa test and also Neg #188 and #189 on Igenex. I am aware that does not mean I don't have Lyme, however, no one believes that I do have it despite having on-going paresthesia and all the burning/tingling symptoms mentioned in another blog on this site. I also have had broken down cartilage in both knees and have a daily low-grade fever that comes on like clockwork at 3:00 pm starting with a slight headache. Anyway, my question is can you tell me where you got the info about the cracking neck being a big telltale sign? Is that what they refer to as 'the lyme shrug'? Does anyone on here know what causes the neck to creak and crack like that? I always think other people can hear it cause it sounds so loud to me, but no one ever seems to.
That's one of my (many) symptoms but tested Neg on the Canadian (oh-so-reliable...NOT!) Elisa test and also Neg #188 and #189 on Igenex. I am aware that does not mean I don't have Lyme, however, no one believes that I do have it despite having on-going paresthesia and all the burning/tingling symptoms mentioned in another blog on this site. I also have had broken down cartilage in both knees and have a daily low-grade fever that comes on like clockwork at 3:00 pm starting with a slight headache. Anyway, my question is can you tell me where you got the info about the cracking neck being a big telltale sign? Is that what they refer to as 'the lyme shrug'? Does anyone on here know what causes the neck to creak and crack like that? I always think other people can hear it cause it sounds so loud to me, but no one ever seems to.
lyla said: " Finding a knowledgeable Dr. is like needle in haystack."
So true. Even when you get a list of doctors from ILADS for 'ILADS trained doctors"
Here is what I wrote in my Journal. I want to make clear that MOST doctors recommended by ILADS are probably fairly good at treating Lyme via evidence based methods. But there are a few that aren't. So read the following, keeping in mind that you MAY come across one that doesn't.
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
So true. Even when you get a list of doctors from ILADS for 'ILADS trained doctors"
Here is what I wrote in my Journal. I want to make clear that MOST doctors recommended by ILADS are probably fairly good at treating Lyme via evidence based methods. But there are a few that aren't. So read the following, keeping in mind that you MAY come across one that doesn't.
http://www.medhelp.org/user_journals/show/936013/Lyme-Specialist--how-to-find-one
I have long term Lyme and though head ache/ neck ache is part of it. Also low grade fever, stiff cracking joints,esp. neck. Are joints cracking and craving to be cracked all the time? Is one side of the face frozen and trembling? As in Bell's Palsy? Dizziness was not that extreme for me nor were head aches that severe. But cracking joints/mainly neck is a BIG tell tale sign of Lyme. You need to do more research before spending money blindly. Try locating someone with the exact same symptoms who has been diagnosed. Finding a knowledgeable Dr. is like needle in haystack.
Yeah unfortunately a lot of Lyme literate docs don't take insurance. I thankfully found one who did so my appointments are only $15 but we are losing that insurance soon so who knows.
Since I haven't been too happy with my Lyme doc, I called about 25 others within 2 hours of me and at the minimum, their first appointment fee is $800. That's just outrageous to me. I believe they are taking advantage of sick people who are desperate. And since my husband has it too, it is double the cost. We can never afford that!
Where do you live?? I have talked to a lot of people and recently had a woman give me a huge list of Lyme docs on the East Coast so maybe I can help.
Since I haven't been too happy with my Lyme doc, I called about 25 others within 2 hours of me and at the minimum, their first appointment fee is $800. That's just outrageous to me. I believe they are taking advantage of sick people who are desperate. And since my husband has it too, it is double the cost. We can never afford that!
Where do you live?? I have talked to a lot of people and recently had a woman give me a huge list of Lyme docs on the East Coast so maybe I can help.
PapaSmurph
I'll answer to the best of my ability your questions:
"The problem we've had with going to a Lyme specialist is that it isn't covered under her insurance (Blue Cross/Blue Shield.) Is this true for all Lyme specialists or just the one she considered? "
That's common among LLMDs (LLMD= Lyme Literate Medical Doctor---- an acronym conferred by patients for ease of writing) Most of them don't. There's a good reason for that, even though it makes it hard on patients sometimes. If an LLMD doesn't have an insurance company 'interfering' with their treatment then they can treat as the ILADS guidelines dictate NOT as the insurance company dictates.
But the good news is----- although patients have to pay up front the LLMD will give an invoice to the patient so they can bill their insurance company. So, depending on how good your ins. plan is, you may recoup most of the money.
"If so, is it possible for a doctor that is covered under her insurance (her general doctor, for instance) to get the tests from IgeneX?"
IF he is willing to. Way too many 'general doctors' have absolutely no clue about which lab to use for Lyme. They use CDC sanctioned labs which are not specific to Lyme. But he might! Doesn't hurt to ask. And you will only save the expense of a doctor visit (to your PCP) not the cost of the tests.
The best, unless I don't have all the information, is to go to an LLMD that doesn't take insurance, get an invoice for the visit and bill your ins. company yourself. (Before you make that appt., if you do, be sure to ask if they do give you an invoice. I've never heard of one that doesn't but it doesn't hurt to make sure.)
There are a few, very few, LLMDs that don't follow ILADS guidelines. Just a heads up----- and another tripwire in your/our journey. An ND was mentioned: If that ND will give long term antibiotics and not siphon you off into supplement and herbal land then that could be a good idea. BUT I'd try an MD first---- a 'good' LLMD.
The tests at Igenex are expensive, as you will see if you got to www.igenex.com. And you may still need an LLMD to interpret the tests and to treat. UNLESS your general doctor is one of the few that does actually know about Lyme.
I'll answer to the best of my ability your questions:
"The problem we've had with going to a Lyme specialist is that it isn't covered under her insurance (Blue Cross/Blue Shield.) Is this true for all Lyme specialists or just the one she considered? "
That's common among LLMDs (LLMD= Lyme Literate Medical Doctor---- an acronym conferred by patients for ease of writing) Most of them don't. There's a good reason for that, even though it makes it hard on patients sometimes. If an LLMD doesn't have an insurance company 'interfering' with their treatment then they can treat as the ILADS guidelines dictate NOT as the insurance company dictates.
But the good news is----- although patients have to pay up front the LLMD will give an invoice to the patient so they can bill their insurance company. So, depending on how good your ins. plan is, you may recoup most of the money.
"If so, is it possible for a doctor that is covered under her insurance (her general doctor, for instance) to get the tests from IgeneX?"
IF he is willing to. Way too many 'general doctors' have absolutely no clue about which lab to use for Lyme. They use CDC sanctioned labs which are not specific to Lyme. But he might! Doesn't hurt to ask. And you will only save the expense of a doctor visit (to your PCP) not the cost of the tests.
The best, unless I don't have all the information, is to go to an LLMD that doesn't take insurance, get an invoice for the visit and bill your ins. company yourself. (Before you make that appt., if you do, be sure to ask if they do give you an invoice. I've never heard of one that doesn't but it doesn't hurt to make sure.)
There are a few, very few, LLMDs that don't follow ILADS guidelines. Just a heads up----- and another tripwire in your/our journey. An ND was mentioned: If that ND will give long term antibiotics and not siphon you off into supplement and herbal land then that could be a good idea. BUT I'd try an MD first---- a 'good' LLMD.
The tests at Igenex are expensive, as you will see if you got to www.igenex.com. And you may still need an LLMD to interpret the tests and to treat. UNLESS your general doctor is one of the few that does actually know about Lyme.
I live in a rather large city and found a lyme literate ND who does take insurance. I know most people have not been so lucky. What area do you live in?
Thank you so much for your advice! That is all very interesting information. The problem we've had with going to a Lyme specialist is that it isn't covered under her insurance (Blue Cross/Blue Shield.) Is this true for all Lyme specialists or just the one she considered? If so, is it possible for a doctor that is covered under her insurance (her general doctor, for instance) to get the tests from IgeneX?
Hello!
Cave76 gave you all the right information.
I had almost every single symptom you just listed for your girlfriend (including the TMI information part you talked about).
I never really had headaches, but that's about it. I saw at least 25 doctors with no answers. I finally went to a naturopath who looked at my live blood under a microscope and said, you have all the markers for Lyme in your blood.
So as Cave posted above, I found a Lyme literate doctor who did the Western Blot test from that IgeneX lab in Cali and it came back positive across the board.
I have been on antibiotics for 5 months now and feel better but still not my old self.
My heart has been greatly affected by this but I got an echo done on it and a holter monitor and about 100 EKG's and everything always comes back normal.
Also, not to worry you, but my husband also has Lyme and I truly believe that one of us was infected and transmitted it to the other. So for your own sake, I would definitely use protection when intimate. There was an article published recently, if you Google it, that showed that there is a high rate of sexual transmission with Lyme.
Cave76 gave you all the right information.
I had almost every single symptom you just listed for your girlfriend (including the TMI information part you talked about).
I never really had headaches, but that's about it. I saw at least 25 doctors with no answers. I finally went to a naturopath who looked at my live blood under a microscope and said, you have all the markers for Lyme in your blood.
So as Cave posted above, I found a Lyme literate doctor who did the Western Blot test from that IgeneX lab in Cali and it came back positive across the board.
I have been on antibiotics for 5 months now and feel better but still not my old self.
My heart has been greatly affected by this but I got an echo done on it and a holter monitor and about 100 EKG's and everything always comes back normal.
Also, not to worry you, but my husband also has Lyme and I truly believe that one of us was infected and transmitted it to the other. So for your own sake, I would definitely use protection when intimate. There was an article published recently, if you Google it, that showed that there is a high rate of sexual transmission with Lyme.
I'm sorry that your friend is having a terrible time with her symptoms AND with getting diagnosed.
Because all of her symptoms (and that applies to many of us here too) can be from causes other than Lyme ----(but aren't, proven by her other tests) ) then there's a great possibility that she has Lyme disease and/or one of it's co-infections. So I think it's wise to look into the possibility of Lyme disease.
BUT---unless she is seen by a doctor who really knows Lyme disease (and there are many who say they do, but don't!) and gets tested by a lab that is specifically for tick borne diseases then she may never know if she has Lyme or not.
The mainstream labs (Labcorp,Quest) do not test for Lyme properly. Igenex Labs in California does and that's the lab that a good Lyme specialist will use.
Another thing that she should do, if she's able, is to be seen by a Lyme specialist. How to do that? Go to ILADS.org and at the top, on the right hand side is "Contact Us". They will send you the names of 3 doctors who have been trained via ILADS. Before you do that, read all you have time for at that site. It gives Guidelines that have a wealth of information in them on top of some information that both of you should know.
I haven't even begun to touch on the vagaries and complications that arise from having Lyme---- but being seen by a good Lyme specialist (and being tested with a good lab) will at least give your friend a good head start.
Can you tell us what labs performed her previous Lyme tests? And the results? (I hope you keep copies of all tests------ you will find that valuable as (and if) your friend goes down the Lyme path.
Please keep us posted. I've only touched the tip of the iceberg that is Lyme disease--- testing and treating.
And please remember that she may not have Lyme----but she certainly hasn't been tested properly for that if she hasn't been tested via Igenex Labs in CA.
Because all of her symptoms (and that applies to many of us here too) can be from causes other than Lyme ----(but aren't, proven by her other tests) ) then there's a great possibility that she has Lyme disease and/or one of it's co-infections. So I think it's wise to look into the possibility of Lyme disease.
BUT---unless she is seen by a doctor who really knows Lyme disease (and there are many who say they do, but don't!) and gets tested by a lab that is specifically for tick borne diseases then she may never know if she has Lyme or not.
The mainstream labs (Labcorp,Quest) do not test for Lyme properly. Igenex Labs in California does and that's the lab that a good Lyme specialist will use.
Another thing that she should do, if she's able, is to be seen by a Lyme specialist. How to do that? Go to ILADS.org and at the top, on the right hand side is "Contact Us". They will send you the names of 3 doctors who have been trained via ILADS. Before you do that, read all you have time for at that site. It gives Guidelines that have a wealth of information in them on top of some information that both of you should know.
I haven't even begun to touch on the vagaries and complications that arise from having Lyme---- but being seen by a good Lyme specialist (and being tested with a good lab) will at least give your friend a good head start.
Can you tell us what labs performed her previous Lyme tests? And the results? (I hope you keep copies of all tests------ you will find that valuable as (and if) your friend goes down the Lyme path.
Please keep us posted. I've only touched the tip of the iceberg that is Lyme disease--- testing and treating.
And please remember that she may not have Lyme----but she certainly hasn't been tested properly for that if she hasn't been tested via Igenex Labs in CA.
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