Aa
Looking for advice
Hi, I started dating a girl that has had Lyme disease for about three years. She didn't tell me at first and only after really getting to know each other, which was good. I have tremendous feelings for this girl but I am a little overwhelmed with this. She was limited for what she was able to do for treatment because of financial reasons, but she also got it just after her Mom died and at one point was going to do the IV thing but her Dad got diagnosed with cancer which made it impossible to go through with it. I am from Canada and have moved to California so the whole medical situation is still foreign to me as in Canada I was used to free health care. She was taking antibiotics that made her feel better but she is not on them anymore. I don't know a whole lot about treatments for Lyme but I continue to find out any information I can, on top of discussing it with her. She is 37, and I'm 45 so we are mature. I'm looking for advice and what I can do for her, how I can help, etc. Of course I talk with her about it but I'm feeling I need to hear from more people who have been through this and what they would recommend. I can help her financially to a certain point but it's a scary thought to have to limit options for treatment because of this and choosing what would be best.
You have definitely done your homework and I commend your willingness to do research and to learn about the disease and the process. As my Aussie friends would say, "Good on you!"
On the infrared sauna, I've heard that it does help. Lyme is happiest at a temperature a bit below our normal body temp. The infrared sauna is said to make the body less friendly for the bacteria. Not a cure, though. There are other things that help, too. I know someone who did months of hyperbaric oxygen treatment which also brought improvement. It's another arrow in the quiver, but it takes multiple arrows to bring down the Lyme beast.
On the infrared sauna, I've heard that it does help. Lyme is happiest at a temperature a bit below our normal body temp. The infrared sauna is said to make the body less friendly for the bacteria. Not a cure, though. There are other things that help, too. I know someone who did months of hyperbaric oxygen treatment which also brought improvement. It's another arrow in the quiver, but it takes multiple arrows to bring down the Lyme beast.
Yes my friend did the sauna with oral antibiotics. Wow, you saw under my skin, I am impressed. Have you googled herxheimer reaction? That is the reaction many of us get when we start antibiotics. Your girl may feel much worse for a while, but herxing (for short) is actually a good thing because your body is reacting to a die off, which is what we want. The infared sauna can help with herxings a great deal my friend tells me.
As for sexual transmission, my fiancée and I are fine as well as other couples I know.
As for sexual transmission, my fiancée and I are fine as well as other couples I know.
Thanks for your reply -- you are dealing with all of this very well -- your lady is very lucky to have you in her life.
Be sure to take care of yourself too, tho -- ! Caregiver fatigue can happen.
Happy weekend!
Be sure to take care of yourself too, tho -- ! Caregiver fatigue can happen.
Happy weekend!
JackieCalifornia, I have been reading about sexual transmission of it. It appears that it is unlikely but protection is being used, not just because of that which is good in the sense that it is not another reminder of Lyme, there are enough reminders for her already. I am beginning to see the difficulty and problems with the Lyme experience being different for everybody.
mojogal, thanks for that info about the sauna. I assume that your friend did it in conjunction with antibiotics? They seem to go hand in hand from what I have been reading.
As Ricobord said some people start accepting the limitations that it causes and don't want to or can't keep fighting. I think my girl is dealing with a bit of both on this. Right now, I feel I can comfortably handle supporting her in different ways. I think with her knowledge and experience dealing with it and what she is covered for and what I can contribute this might end up being a motivational story for other people along with the stories from everyone else. Hopefully the right medicine for everyone becomes easily available for everyone soon.
I have just watched Under Our Skin, I felt I was prepared for it and I got through it. There were some tough parts for sure but there was a lot more head shaking about the IDSA, drug manufacturers, etc. Some very motivational people in that too.
mojogal, thanks for that info about the sauna. I assume that your friend did it in conjunction with antibiotics? They seem to go hand in hand from what I have been reading.
As Ricobord said some people start accepting the limitations that it causes and don't want to or can't keep fighting. I think my girl is dealing with a bit of both on this. Right now, I feel I can comfortably handle supporting her in different ways. I think with her knowledge and experience dealing with it and what she is covered for and what I can contribute this might end up being a motivational story for other people along with the stories from everyone else. Hopefully the right medicine for everyone becomes easily available for everyone soon.
I have just watched Under Our Skin, I felt I was prepared for it and I got through it. There were some tough parts for sure but there was a lot more head shaking about the IDSA, drug manufacturers, etc. Some very motivational people in that too.
I have not personally used infared sauna therapy but a Lyme friend of mine did with great results. She is now actually cured not by that alone but she said it helped her.
Yes, Lyme effects everyone differently but what you described with the pain and swelling is something I experienced.
I have lesions on my brain from the co-infection, Bartonella. At one point I couldn't walk, it was only a few days but it was scary. I was misdiagnosed with MS.
Many of us go from Doctor to Doctor trying to find the correct answer for all of this. I think knowledge is power so the more you learn, the more you can help your girl.
We are here for you anytime.
Yes, Lyme effects everyone differently but what you described with the pain and swelling is something I experienced.
I have lesions on my brain from the co-infection, Bartonella. At one point I couldn't walk, it was only a few days but it was scary. I was misdiagnosed with MS.
Many of us go from Doctor to Doctor trying to find the correct answer for all of this. I think knowledge is power so the more you learn, the more you can help your girl.
We are here for you anytime.
You're very welcome, on behalf of us all. We've each been through this ourselves and/or with family and friends, so we are glad to help if we can with the benefit of our experiences.
One thing about 'the Lyme experience': it's different for everyone for a lot of reasons, so our stories may or may not be similar to your experience. Gotta bob and weave and stay nimble.
Ummmm, you might check into that sexual transmission aspect sooner rather than later: infection may not occur on first or 12th etc. contact, and if you start taking precautions now, it may protect you. Don't assume that it's too late until you've done some research, and in the meantime, I'd use 'protection'. If you both get sick, who's gonna take care of whom?
One thing about 'the Lyme experience': it's different for everyone for a lot of reasons, so our stories may or may not be similar to your experience. Gotta bob and weave and stay nimble.
Ummmm, you might check into that sexual transmission aspect sooner rather than later: infection may not occur on first or 12th etc. contact, and if you start taking precautions now, it may protect you. Don't assume that it's too late until you've done some research, and in the meantime, I'd use 'protection'. If you both get sick, who's gonna take care of whom?
One question before I get to my lengthy reply. Have any of you tried infrared sauna therapy to help out? In reading about this subject I see that it is part of a treatment plan. I have access to one through work and it sounds like it is a good thing. Any thoughts?
I am certainly glad I chose to post on this forum because the effort and advice but into the replies is astounding. I want to thank you all for contributing to my request. I want you to know that every single word that each of you wrote is being taken in and put to use. From these words, there are things I can do, things I can look into myself and find out more information on, and things I can talk about with my girl coming from a more knowledgeable place and not having her to explain everything, which must be a burden.
My girl did go through the very debilitating period where getting dressed and moving around took forever, her legs swelled up, had extremely intense pain in her feet, etc. Everything she did took a great effort all the while trying to get diagnosed. This sounds like a typical experience from what I have read so far. Does this sound right even without much detail? I didn't know her during this period and when I met her and got to know her there were no outward signs of anything. She did allude to something amiss a few times and I knew something was up (I had no idea what though, just something). I didn't pursue trying to dig deeper because I figured it would be a much better experience for her and me when she felt comfortable with it.
I'm taking a lot from the comments about how this affects the mental state. I can understand the frustration of day to day with this, at least I think I can by comparing it to some things I have been through with sport injuries. Not that it is anywhere near the same but just from the point that if you want to be active and feel it but you can't it is very frustrating. In my cases at least I had a time frame on when things would be better. I didn't know her before she had this so it is hard to know a lot about how this affects her. We have talked but it's not the same, hearing it from other people puts it in a better perspective.
mojogal, thanks for the advice concerning watching the movie. I will do some more reading and investigating before I approach this.
JackieCalifornia, I will look into those things regarding protecting myself, it is something that I have thought about but don't really need to approach at this point but will in the near future so I am better prepared. I looked briefly into my insurance at work and it is a PPO, United Health and it is group insurance.
Ricobord, this is my first reply to you and thank you very much for your words. Your points will be added to my new and ever growing arsenal of knowledge on this. Great advice on those questions about the before and after Lyme, those will definitely give me a better understanding in general and of course, in particular to her.
Again I didn't reply to all your points, Ricobord, mojogal and JackieCalifornia but as I say every word you wrote is being considered.
I am certainly glad I chose to post on this forum because the effort and advice but into the replies is astounding. I want to thank you all for contributing to my request. I want you to know that every single word that each of you wrote is being taken in and put to use. From these words, there are things I can do, things I can look into myself and find out more information on, and things I can talk about with my girl coming from a more knowledgeable place and not having her to explain everything, which must be a burden.
My girl did go through the very debilitating period where getting dressed and moving around took forever, her legs swelled up, had extremely intense pain in her feet, etc. Everything she did took a great effort all the while trying to get diagnosed. This sounds like a typical experience from what I have read so far. Does this sound right even without much detail? I didn't know her during this period and when I met her and got to know her there were no outward signs of anything. She did allude to something amiss a few times and I knew something was up (I had no idea what though, just something). I didn't pursue trying to dig deeper because I figured it would be a much better experience for her and me when she felt comfortable with it.
I'm taking a lot from the comments about how this affects the mental state. I can understand the frustration of day to day with this, at least I think I can by comparing it to some things I have been through with sport injuries. Not that it is anywhere near the same but just from the point that if you want to be active and feel it but you can't it is very frustrating. In my cases at least I had a time frame on when things would be better. I didn't know her before she had this so it is hard to know a lot about how this affects her. We have talked but it's not the same, hearing it from other people puts it in a better perspective.
mojogal, thanks for the advice concerning watching the movie. I will do some more reading and investigating before I approach this.
JackieCalifornia, I will look into those things regarding protecting myself, it is something that I have thought about but don't really need to approach at this point but will in the near future so I am better prepared. I looked briefly into my insurance at work and it is a PPO, United Health and it is group insurance.
Ricobord, this is my first reply to you and thank you very much for your words. Your points will be added to my new and ever growing arsenal of knowledge on this. Great advice on those questions about the before and after Lyme, those will definitely give me a better understanding in general and of course, in particular to her.
Again I didn't reply to all your points, Ricobord, mojogal and JackieCalifornia but as I say every word you wrote is being considered.
Looks like you already have some great advice here, but I'll add in my long winded two cents.
Yes, healthcare and insurance in the US is a messy labyrinth of complexities. Insurers vary greatly, and so what I've experienced with my insurance company could be very different from what your girlfriend is dealing with. In general, insurance companies decline to pay for long term treatment for Lyme Disease because they don't believe it's necessary. (For what it's worth, Canadian Lyme patients who do manage to get 3 weeks of Doxycycline but don't get well have to come to the US for further treatment. The Canadian health system forbids treatment beyond the standard 3-4 weeks.)
Some people go to an out of network LLMD, submit the bills to their insurance, and get some or most of it reimbursed. Mine doesn't work that way. They never pay for anything retroactively. It is very important to spend some time with the insurance customer service reps to get a clear understanding of their rules and requirements as well as coverage policies.
From what I have read, HMOs like Kaiser do not have a good reputation among those with tick borne diseases. This is based on stories I've read, not personal experience, so I don't know if any of this has changed recently. But so far, I have never heard of an HMO providing or paying for long term abx for Lyme & coinfections.
In California there are some precedents that are good news for chronic Lyme patients. A forest ranger featured in "Under Our Skin" sued his insurance company as he wanted them to pay for his treatment, and he won. There is a man in the Bay Area with a blog about living with Lyme and he was also able to get his insurance company to pay for his long term abx, although he's had delays and hassles. There was also a landmark decision a couple years ago by a state appointed committee that handles disputes between insurance companies and patients regarding coverage, and they ruled that a Marin County woman's insurance company had to pay for her ongoing abx for Lyme because her doctor said it was necessary. All of these examples can be used in an appeal to an insurance company.
Getting treated first requires having a doctor who believes in Lyme Disease and long term treatment. Which means that if your girlfriend wants to get well, then she needs to get to a good LLMD for an official diagnosis and a treatment plan. A doctor who dabbles in treating Lyme and will prescribe Doxycycline indefinitely is less likely to get a chronic Lyme patient well than an experienced LLMD who knows how to adjust treatment to the individual.
If your GF is not willing to go through this effort, then she has not made a decision that she wants to get well. Many chronic Lyme patients get discouraged and give up, accepting their reduced functionality and making adjustments in their life to accomodate their illness. Some get weary of treatment or simply don't have the money to continue and conclude they can live with their current level of illness for now. Some people conclude that having Lyme is part of their identity, not that they chose it, but that they're stuck with it. Unfortunately, without even natural treatments to hold it at bay, Lyme eventually gets worse. It can also cause permanent damage over time to joints and nerves. It can cause crippling arthritis, neuropathy, or hearing or vision loss. Doing nothing isn't a good long term plan.
I personally am a fighter. While this has not always been a good thing in my life, it has served me well in having Lyme. I didn't accept it when doctors dismissed me or threw up their hands and said I had Chronic Fatigue Syndrome or some variation of MS. I kept looking until I figured it out for myself, found an LLMD and finally got my diagnosis. Then I spent hours on the phone at various times dealing with my insurance. Whenever I hit a wall, I looked for another opening. I was determined to get well, whatever it took.
Everyone has their own unique set of circumstances, of illness, medical care, finances, family, and work. Each person must make their own path through the maze that can be Lyme Disease. While I took the approach of integrated treatment, I do not criticize those who take a different one. (Well, maybe I do criticize those few who chase after bizarre, unproven, and usually costly "treatments" peddled by questionable people.) I do not, however, endorse giving up.
While looking past a person's chronic health issue is admirable in a relationship, there are big questions you must ask yourself. Funding someone else's treatment can become a tar pit. Chronic Lyme can easily cost $30K-$100K to treat to a point of wellness, especially if there are any coinfections. The supplements to support my Lyme, Bartonella, & Babesia ravaged body through treatment have cost me $250-$500/month out of pocket. No one can tell you how much it will cost until it's done.
Another thought I'll offer aside from the financials is that Lyme often affects a person's mental well being. It is well known to cause anxiety, irritability, and reduced cognitive abilities. I know I had a level of agitation that made me annoying at times. Just being fatigued and in pain reduces one's intellectual abilities significantly. My memory problems and word finding issues also got awkward at times. They are better, but not gone. I don't know if the memory issues will fully recover as I have a lot of brain lesions that are unlikely to heal. It is unlikely I could go back to my demanding field of work.
Since you didn't know her before she got Lyme, you don't know what she's like without it. I know I am softer and gentler as I get better, but my poor husband has suffered a great deal from my irritability and limited capacity in the last 2 1/2 years. Our lifestyle is quite different now vs. when I was well because of my limited capacity. You might have some conversations with her about how she feels different with Lyme vs. without it. Some people have no affect on their personality or behavior at all, and this is not an issue. But what did she think about/care about/do with her time before Lyme became all consuming? It is worth exploration in my opinion.
I hope this brain dump has some useful thoughts in it for you! "The Lyme Complex" is not an easy beast to deal with.
Yes, healthcare and insurance in the US is a messy labyrinth of complexities. Insurers vary greatly, and so what I've experienced with my insurance company could be very different from what your girlfriend is dealing with. In general, insurance companies decline to pay for long term treatment for Lyme Disease because they don't believe it's necessary. (For what it's worth, Canadian Lyme patients who do manage to get 3 weeks of Doxycycline but don't get well have to come to the US for further treatment. The Canadian health system forbids treatment beyond the standard 3-4 weeks.)
Some people go to an out of network LLMD, submit the bills to their insurance, and get some or most of it reimbursed. Mine doesn't work that way. They never pay for anything retroactively. It is very important to spend some time with the insurance customer service reps to get a clear understanding of their rules and requirements as well as coverage policies.
From what I have read, HMOs like Kaiser do not have a good reputation among those with tick borne diseases. This is based on stories I've read, not personal experience, so I don't know if any of this has changed recently. But so far, I have never heard of an HMO providing or paying for long term abx for Lyme & coinfections.
In California there are some precedents that are good news for chronic Lyme patients. A forest ranger featured in "Under Our Skin" sued his insurance company as he wanted them to pay for his treatment, and he won. There is a man in the Bay Area with a blog about living with Lyme and he was also able to get his insurance company to pay for his long term abx, although he's had delays and hassles. There was also a landmark decision a couple years ago by a state appointed committee that handles disputes between insurance companies and patients regarding coverage, and they ruled that a Marin County woman's insurance company had to pay for her ongoing abx for Lyme because her doctor said it was necessary. All of these examples can be used in an appeal to an insurance company.
Getting treated first requires having a doctor who believes in Lyme Disease and long term treatment. Which means that if your girlfriend wants to get well, then she needs to get to a good LLMD for an official diagnosis and a treatment plan. A doctor who dabbles in treating Lyme and will prescribe Doxycycline indefinitely is less likely to get a chronic Lyme patient well than an experienced LLMD who knows how to adjust treatment to the individual.
If your GF is not willing to go through this effort, then she has not made a decision that she wants to get well. Many chronic Lyme patients get discouraged and give up, accepting their reduced functionality and making adjustments in their life to accomodate their illness. Some get weary of treatment or simply don't have the money to continue and conclude they can live with their current level of illness for now. Some people conclude that having Lyme is part of their identity, not that they chose it, but that they're stuck with it. Unfortunately, without even natural treatments to hold it at bay, Lyme eventually gets worse. It can also cause permanent damage over time to joints and nerves. It can cause crippling arthritis, neuropathy, or hearing or vision loss. Doing nothing isn't a good long term plan.
I personally am a fighter. While this has not always been a good thing in my life, it has served me well in having Lyme. I didn't accept it when doctors dismissed me or threw up their hands and said I had Chronic Fatigue Syndrome or some variation of MS. I kept looking until I figured it out for myself, found an LLMD and finally got my diagnosis. Then I spent hours on the phone at various times dealing with my insurance. Whenever I hit a wall, I looked for another opening. I was determined to get well, whatever it took.
Everyone has their own unique set of circumstances, of illness, medical care, finances, family, and work. Each person must make their own path through the maze that can be Lyme Disease. While I took the approach of integrated treatment, I do not criticize those who take a different one. (Well, maybe I do criticize those few who chase after bizarre, unproven, and usually costly "treatments" peddled by questionable people.) I do not, however, endorse giving up.
While looking past a person's chronic health issue is admirable in a relationship, there are big questions you must ask yourself. Funding someone else's treatment can become a tar pit. Chronic Lyme can easily cost $30K-$100K to treat to a point of wellness, especially if there are any coinfections. The supplements to support my Lyme, Bartonella, & Babesia ravaged body through treatment have cost me $250-$500/month out of pocket. No one can tell you how much it will cost until it's done.
Another thought I'll offer aside from the financials is that Lyme often affects a person's mental well being. It is well known to cause anxiety, irritability, and reduced cognitive abilities. I know I had a level of agitation that made me annoying at times. Just being fatigued and in pain reduces one's intellectual abilities significantly. My memory problems and word finding issues also got awkward at times. They are better, but not gone. I don't know if the memory issues will fully recover as I have a lot of brain lesions that are unlikely to heal. It is unlikely I could go back to my demanding field of work.
Since you didn't know her before she got Lyme, you don't know what she's like without it. I know I am softer and gentler as I get better, but my poor husband has suffered a great deal from my irritability and limited capacity in the last 2 1/2 years. Our lifestyle is quite different now vs. when I was well because of my limited capacity. You might have some conversations with her about how she feels different with Lyme vs. without it. Some people have no affect on their personality or behavior at all, and this is not an issue. But what did she think about/care about/do with her time before Lyme became all consuming? It is worth exploration in my opinion.
I hope this brain dump has some useful thoughts in it for you! "The Lyme Complex" is not an easy beast to deal with.
Just as an addition to what Jackie said. Under my skin can be watched free online however, I wouldn't recommend it at this point because it freaked my fiancé out as well as myself when I first got ill. Perhaps after you read Burascano's treatment guidelines and some other material, then you might be more prepared to watch Under my skin.
Recently I joined the twitter Lyme community and ran into a girl who was in the film. They showed her unable to walk in the movie and I am happy to report she is 95% better now, so that gave me a lot of hope. She also has a supportive BF like yourself.
Recently I joined the twitter Lyme community and ran into a girl who was in the film. They showed her unable to walk in the movie and I am happy to report she is 95% better now, so that gave me a lot of hope. She also has a supportive BF like yourself.
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If however you go out to e.g., Blue Cross/Blue Shield or another private company, they can refuse to take you as an individual insured or charge you a higher rate if you are ill when you start the coverage. E.g., if they think your cholesterol is too high, they can refuse to accept you into the plan, or they can offer you coverage at a higher cost to you.
HMOs are a whole different animal, with a network of docs. However, HMOs (eg Kaiser) have very fixed formularies of what they will and will not diagnose and how they will and will not treat: the rules come from on high, regardless of the doc's personal opinion of what is wrong and what should be done, particularly in the case of something like Lyme where the jury is still out. Exceptions can be made on appeal, but seldom are, to my understanding. It's a smaller, private version of Canada-style medical coverage, to my understanding.
And in another year, the government (state and/or federal) will begin to take over the US medical system, and all bets are off. You will get only what they are willing to give you, because the formularies are set and fixed. In a new and emerging disease like AIDS or Lyme, such an approach can be catastrophic until enough people die or are terribly ill for the policies to be reconsidered.
The answer is, there is no good answer. My own answer was: I was going to spend everything I owned to get well, if it came to that, and it was pretty expensive ... and worth every nickel. I was non functional for a long time, and I didn't find an LLMD until I hit Dr No. 20. The first 19 were useless.... tho it was No. 19 who, in desperation, ran a Lyme test because everything else had been ruled out. Test came back positive (tho often they don't), and the doc said that regardless of the positive test, "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and ... they are all ... near death."
Well, if you don't treat people, they won't get well. DUH. I took the test results to a Lyme specialist (LLMD) and got fully diagnosed and treated ... and well again.
=======================
I'd suggest that if you are willing to do so, you help your lady friend figure out her insurance situation, help her get diagnosed with whatever she's got, help her through it like you would a child ... because if she's as addled as I was, going to the grocery store was an overwhelming task, never mind strategizing through a misunderstood disease.
But before you offer to put her on your insurance as your dependent, go see a marital lawyer (aka family lawyer or divorce lawyer) to tell you what kind of obligations you may be taking on that you cannot easily escape. Do you remember the first 'palimony' cases some years ago, where a guy promised to take care of his sweetie despite their lack of a marriage certificate? That was Lee Marvin, the actor, and his girlfriend. He had said he would take care of her, and the court said that was a commitment, never mind no wedding ring. The law has evolved a lot since then, but not necessarily to your benefit. Make no promises, just be a friend. Don't call her your wife or your spouse or your significant other until you talk to a divorce lawyer, and have that meeting with the lawyer by yourself ... don't take the sweetie with you and I wouldn't even tell her about the meeting. You have to protect yourself, because you're clearly a nice guy who can get taken advantage of, whether by Sweetie or by the court system.
Be really really careful here.
And on another careful note: I don't know if you can get Lyme from sex. Somebody here might know. But trust me, you don't want it.
Okay, end of downer speech. Take care, be careful. Let us know what you do and how you do, okay?
If however you go out to e.g., Blue Cross/Blue Shield or another private company, they can refuse to take you as an individual insured or charge you a higher rate if you are ill when you start the coverage. E.g., if they think your cholesterol is too high, they can refuse to accept you into the plan, or they can offer you coverage at a higher cost to you.
HMOs are a whole different animal, with a network of docs. However, HMOs (eg Kaiser) have very fixed formularies of what they will and will not diagnose and how they will and will not treat: the rules come from on high, regardless of the doc's personal opinion of what is wrong and what should be done, particularly in the case of something like Lyme where the jury is still out. Exceptions can be made on appeal, but seldom are, to my understanding. It's a smaller, private version of Canada-style medical coverage, to my understanding.
And in another year, the government (state and/or federal) will begin to take over the US medical system, and all bets are off. You will get only what they are willing to give you, because the formularies are set and fixed. In a new and emerging disease like AIDS or Lyme, such an approach can be catastrophic until enough people die or are terribly ill for the policies to be reconsidered.
The answer is, there is no good answer. My own answer was: I was going to spend everything I owned to get well, if it came to that, and it was pretty expensive ... and worth every nickel. I was non functional for a long time, and I didn't find an LLMD until I hit Dr No. 20. The first 19 were useless.... tho it was No. 19 who, in desperation, ran a Lyme test because everything else had been ruled out. Test came back positive (tho often they don't), and the doc said that regardless of the positive test, "Oh, you couldn't possibly have Lyme. I have patients with Lyme, and ... they are all ... near death."
Well, if you don't treat people, they won't get well. DUH. I took the test results to a Lyme specialist (LLMD) and got fully diagnosed and treated ... and well again.
=======================
I'd suggest that if you are willing to do so, you help your lady friend figure out her insurance situation, help her get diagnosed with whatever she's got, help her through it like you would a child ... because if she's as addled as I was, going to the grocery store was an overwhelming task, never mind strategizing through a misunderstood disease.
But before you offer to put her on your insurance as your dependent, go see a marital lawyer (aka family lawyer or divorce lawyer) to tell you what kind of obligations you may be taking on that you cannot easily escape. Do you remember the first 'palimony' cases some years ago, where a guy promised to take care of his sweetie despite their lack of a marriage certificate? That was Lee Marvin, the actor, and his girlfriend. He had said he would take care of her, and the court said that was a commitment, never mind no wedding ring. The law has evolved a lot since then, but not necessarily to your benefit. Make no promises, just be a friend. Don't call her your wife or your spouse or your significant other until you talk to a divorce lawyer, and have that meeting with the lawyer by yourself ... don't take the sweetie with you and I wouldn't even tell her about the meeting. You have to protect yourself, because you're clearly a nice guy who can get taken advantage of, whether by Sweetie or by the court system.
Be really really careful here.
And on another careful note: I don't know if you can get Lyme from sex. Somebody here might know. But trust me, you don't want it.
Okay, end of downer speech. Take care, be careful. Let us know what you do and how you do, okay?
Agreed about the ILADS site. It's written by and for drs and other practitioners, but over time other posts more patient-accessible have been added on ... there seems not to be an 'editor' who controls what gets posted, which makes the site very messy, but messy has a purpose in a situation like Lyme where the answers (and some of the questions) are still murky.
I have had what patients often call 'Lyme brain' (poor memory, fuzzy thinking, lack of logical connections, just as mojo says above), so I can fully appreciate the situation, but it is hard to describe to someone who hasn't been there. While I was actively ill, I described how I felt as a combination of the flu and a hangover, and others have agree with that ... which may give you some insight into how your sweetie is feeling. Everyone however is different in Lyme, which is part of what really confuses the docs: no two Lyme patients are exactly alike. Some of us have more neurological symptoms, some more joint pain. Sometimes it switches around in the same person, and the symptoms often come seasonally in some people. But everyone is different, and it's not constant even within the same person. The infection messes with the endocrine system, which controls so much of what goes on in the body, such as thyroid and other endocrine levels. A real mess, tho some are not as badly afflicted as others. No wonder the nonLLMDs are confused.
And I forget if anyone explained the term LLMD up above: it is NOT a degree or a certificate or title. It's patient slang short for 'Lyme-literate MD', meaning a doc -- can be a GP or a specialist of any kind -- but it has to be a doc with an open mind. Unfortunately there is no diploma given for
an 'open mind', so you sometimes don't know until you've seen a doc for a while how much of an LLMD s/he is. Welcome to the wild wild west of medicine.
Be skeptical about what you read out there, because there is much out there that makes sense today, but is outdated by next week. The ILADS website, esp. Burrascano's treatment guidelines, are quite good, tho written more for docs. I personally prefer to read what is written for docs, because it's straightforward and no mushy weirdness.
The doc who would most obviously diagnose and treat an infectious disease are ... yes, *infectious disease* docs, but they are rheumatologists are two groups who are hamstrung by the early research done a decade or two ago about Lyme diagnosis and treatment, so that progress has stopped in those specialties. The docs who 'discovered' and first described Lyme are still prominent in the field, and they are not about to back off their now-dated impressions and conclusions. Sadly so.
You are in luck to be in California, because California state law protects LLMDs and does not require them to diagnose and treat according to the opinions of the state medical board. A doc in Calif. can treat according to his/her conscience, and that makes all the difference. Texas is a different situation, tho, and there are, so I read, no LLMDs to be found because they have been run out of the state so as not to be brought up on charges of 'over treating' patients with more than a couple weeks of antibiotics.
A book you might want to read (now in paperback) is the unfortunately titled 'Cure Unknown', which interweaves a few patients' histories with the politics of Lyme. It will give you an understanding of what's up with the docs and why. You can skim the technical medical parts if they bog you down, but you'll get the idea. There is also a movie now on DVD and prob online called 'Under Our Skin' showing real life Lyme patients. I saw the movie in preview and was alarmed by it, because they picked some terribly afflicted people, and had not yet added an epilogue showing how the patients in the movie now are after treatment. You may want to check a preview online before renting/viewing it with your sweetie. Not everyone is afflicted in the same way or to the same degree.
I agree with your comment about preexisting condiiton possibly ruling out getting new insurance, but it depends on what kind of insurance she is eligible for: for example, if you get a new job with a company that offers med insurance, you are usually covered fully and immediately no matter what you've got or how sick you are. It's called 'guaranteed issue' of the policy, and is called 'group insurance.'
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I have had what patients often call 'Lyme brain' (poor memory, fuzzy thinking, lack of logical connections, just as mojo says above), so I can fully appreciate the situation, but it is hard to describe to someone who hasn't been there. While I was actively ill, I described how I felt as a combination of the flu and a hangover, and others have agree with that ... which may give you some insight into how your sweetie is feeling. Everyone however is different in Lyme, which is part of what really confuses the docs: no two Lyme patients are exactly alike. Some of us have more neurological symptoms, some more joint pain. Sometimes it switches around in the same person, and the symptoms often come seasonally in some people. But everyone is different, and it's not constant even within the same person. The infection messes with the endocrine system, which controls so much of what goes on in the body, such as thyroid and other endocrine levels. A real mess, tho some are not as badly afflicted as others. No wonder the nonLLMDs are confused.
And I forget if anyone explained the term LLMD up above: it is NOT a degree or a certificate or title. It's patient slang short for 'Lyme-literate MD', meaning a doc -- can be a GP or a specialist of any kind -- but it has to be a doc with an open mind. Unfortunately there is no diploma given for
an 'open mind', so you sometimes don't know until you've seen a doc for a while how much of an LLMD s/he is. Welcome to the wild wild west of medicine.
Be skeptical about what you read out there, because there is much out there that makes sense today, but is outdated by next week. The ILADS website, esp. Burrascano's treatment guidelines, are quite good, tho written more for docs. I personally prefer to read what is written for docs, because it's straightforward and no mushy weirdness.
The doc who would most obviously diagnose and treat an infectious disease are ... yes, *infectious disease* docs, but they are rheumatologists are two groups who are hamstrung by the early research done a decade or two ago about Lyme diagnosis and treatment, so that progress has stopped in those specialties. The docs who 'discovered' and first described Lyme are still prominent in the field, and they are not about to back off their now-dated impressions and conclusions. Sadly so.
You are in luck to be in California, because California state law protects LLMDs and does not require them to diagnose and treat according to the opinions of the state medical board. A doc in Calif. can treat according to his/her conscience, and that makes all the difference. Texas is a different situation, tho, and there are, so I read, no LLMDs to be found because they have been run out of the state so as not to be brought up on charges of 'over treating' patients with more than a couple weeks of antibiotics.
A book you might want to read (now in paperback) is the unfortunately titled 'Cure Unknown', which interweaves a few patients' histories with the politics of Lyme. It will give you an understanding of what's up with the docs and why. You can skim the technical medical parts if they bog you down, but you'll get the idea. There is also a movie now on DVD and prob online called 'Under Our Skin' showing real life Lyme patients. I saw the movie in preview and was alarmed by it, because they picked some terribly afflicted people, and had not yet added an epilogue showing how the patients in the movie now are after treatment. You may want to check a preview online before renting/viewing it with your sweetie. Not everyone is afflicted in the same way or to the same degree.
I agree with your comment about preexisting condiiton possibly ruling out getting new insurance, but it depends on what kind of insurance she is eligible for: for example, if you get a new job with a company that offers med insurance, you are usually covered fully and immediately no matter what you've got or how sick you are. It's called 'guaranteed issue' of the policy, and is called 'group insurance.'
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You are welcome.
I am still ill. I have been in treatment for just a year. I was bit over 20 years ago so mine is chronic Lyme. It was misdiagnosed for years.
Memory is bad for me. I might think of something I have to do, turn my head to do it and forget the next second.
Another example of the memory, my daughter told me on the phone that her and her husband are saving to buy a house. She repeated it another time and I was shocked thinking I had never heard that before. Both my daughters now know that mom may not remember everything said.
I also have problems picking the correct word in conversation. I will be talking but the next word just doesn't come to me. It's very frustrating.
Was your GF officially diagnosed with Lyme? Many LLMD will not write Lyme as a diagnoses but will write CFS instead for insurance coverage purposes. You should ask her.
I know people that have been cured of Lyme and all the co-infections so don't give up hope!
I am still ill. I have been in treatment for just a year. I was bit over 20 years ago so mine is chronic Lyme. It was misdiagnosed for years.
Memory is bad for me. I might think of something I have to do, turn my head to do it and forget the next second.
Another example of the memory, my daughter told me on the phone that her and her husband are saving to buy a house. She repeated it another time and I was shocked thinking I had never heard that before. Both my daughters now know that mom may not remember everything said.
I also have problems picking the correct word in conversation. I will be talking but the next word just doesn't come to me. It's very frustrating.
Was your GF officially diagnosed with Lyme? Many LLMD will not write Lyme as a diagnoses but will write CFS instead for insurance coverage purposes. You should ask her.
I know people that have been cured of Lyme and all the co-infections so don't give up hope!
Thank you for your reply and your kind words.
I am so glad that you mentioned how it can affect memory, etc. I am pretty patient in general but I will admit that sometimes I have to think about it when she sometimes doesn't remember things. Can you tell me how it affected your memory? Was it short term memory, or things like points in conversations you had a couple of weeks back? Are you cured now and did it have lasting effects on you in that regard?
Thanks again.
I am so glad that you mentioned how it can affect memory, etc. I am pretty patient in general but I will admit that sometimes I have to think about it when she sometimes doesn't remember things. Can you tell me how it affected your memory? Was it short term memory, or things like points in conversations you had a couple of weeks back? Are you cured now and did it have lasting effects on you in that regard?
Thanks again.
Thank you so much for the reply. You are right at one point saying that the ILADS site might be too much info for a newbie, but you have to start somewhere. I have read a lot of stuff about it to this point. I try to limit talking about it with her because she obviously thinks about it all the time and I want to limit her being a research source for me. I have gotten to the point where I wanted to correspond with other people who know/knew and live/lived with it, not so much the science of it but the everyday dealing with it and real world help that is available.
I am confused about the insurance issue. She does have insurance but I don't know the fine details about what is covered on it. I will look into it as well but would you know if getting different insurance would be an option. Isn't is a pre-existing condition that wouldn't be covered? I'm a little clueless on this given what I am used to. Even now I work for a big company and haven't had to deal with medical stuff aside from going to the Health Center at my company and having everything taken care of because it is run by the company.
Thanks again.
I am confused about the insurance issue. She does have insurance but I don't know the fine details about what is covered on it. I will look into it as well but would you know if getting different insurance would be an option. Isn't is a pre-existing condition that wouldn't be covered? I'm a little clueless on this given what I am used to. Even now I work for a big company and haven't had to deal with medical stuff aside from going to the Health Center at my company and having everything taken care of because it is run by the company.
Thanks again.
Bravo to you and your obvious care for this woman. That is the first thing. Being supportive is crucial. I have heard many cases of spouses leaving the Lyme patient. So you are to be commended there.
In Lyme and some of the co-infections, it can affect your friend's memory and cognitive abilities. If you are patient with that, it will mean a lot.
It took my fiancé a little while to really realize that I can't remember things. My fiancé also did research. A good place to start would be ILADS dot org. Read Burascano's treatment Guidelines.
Your GF should see a Lyme literate Dr (LLMD) you can email ILADS for a recommendation in your area if she doesn't already have one.
I have been treated on all oral antibiotics which are cheaper and covered under insurance. Others prefer IV only. I have seen cures with both ways.
It is scary to think that the disease can't be treated for financial reasons but you do the best you can. There are also herbal supplements that some people take. I am not sold on being cured just by herbal treatments alone.
Good luck and we are here for you.
In Lyme and some of the co-infections, it can affect your friend's memory and cognitive abilities. If you are patient with that, it will mean a lot.
It took my fiancé a little while to really realize that I can't remember things. My fiancé also did research. A good place to start would be ILADS dot org. Read Burascano's treatment Guidelines.
Your GF should see a Lyme literate Dr (LLMD) you can email ILADS for a recommendation in your area if she doesn't already have one.
I have been treated on all oral antibiotics which are cheaper and covered under insurance. Others prefer IV only. I have seen cures with both ways.
It is scary to think that the disease can't be treated for financial reasons but you do the best you can. There are also herbal supplements that some people take. I am not sold on being cured just by herbal treatments alone.
Good luck and we are here for you.
Welcome to California!
Sorry to hear about your lady friend, but glad she told you.
Others here who have done recent reading on the sexual transmission possibilities of Lyme can speak to that point better than I. Research continues, and so views and approaches change over time.
If your lady has health insurance, it may well cover most or all of her treatment. My own insurance covered it (with the co-payments and deductibles that applied under my plan to any illness), both medication and tests and MD's appointments.
Different insurance plans approach all these things differently, but if your lady will be looking to you for financial assistance, I would certainly sit down and have a serious conversation with her about what her monetary expectations are. If you are not prepared to go that route, then do say so, and her reaction will be what it is.
There is much controversy about Lyme disease and other infections ('co-infections') carried by the same ticks, so there are no quick explanations of the situation. ILADS [dot] org is the main voluntary group for MDs who think progressive thoughts about diagnosis and treatment, and their website has a lot of information (maybe too much for a newbie) about Lyme and its co-infections.
To my reading and understanding, IV treatment is not always (perhaps not often) required except in very stubborn infections. I was treated by a very well known and respected LLMD (meaning Lyme-literate MD, which is patient slang for an MD who thinks more progressive thoughts about Lyme and its co-infections), and I had only oral antibiotics (pills or liquids). I think most of us here have been treated with oral meds. That keeps the expense and hassle down compared to IV meds.
Stopping treatment because one is 'feeling better' is not a good idea unless the doc is agreeable. Lyme, like tuberculosis, is a very slow-reproducing bacterium, and it is when reproducing that these bacteria are most susceptible to antibiotics because the cell wall is breached. Usual TB treatment is 18 months. My Lyme treatment was about 8-9 months. Everyone is different, but 'feeling better' is not conclusive evidence of a cure.
In your friend's situation, I would get insurance, because at a certain point, if not immediately, coverage will kick in. Insurance companies are sometimes skeptical of long term antibiotic treatment, but that's another issue.
Sorry not to have firmer answers for you. I'm sure the Canadian system seems much cleaner and tidier, but the concern I have for 'Obamacare' (which is coming soon) is that the gov't will set diagnostic and treatment requirements and standards which are in accord with so-called mainstream, CDC-driven medical approaches ... which is the long way of saying that Lyme patients will get a few weeks of antibiotics and a cheery 'good luck!' on their way out the door.
(Once the gov't controls payment, the gov't will control treatment. We have had posters here who indicate that HMOs they have had experience with also adhere to the CDC 'standard.' (CDC = Centers for Disease Control, an arm of the US government's Department of Health and Human Services.) I have heard that getting Lyme in Canada is not a good thing, and Canadians come to the US for treatment if they can afford it.)
Sorry to be a downer. Maybe someone here can give a cheerier view. Best wishes to you and your sweetie.
Sorry to hear about your lady friend, but glad she told you.
Others here who have done recent reading on the sexual transmission possibilities of Lyme can speak to that point better than I. Research continues, and so views and approaches change over time.
If your lady has health insurance, it may well cover most or all of her treatment. My own insurance covered it (with the co-payments and deductibles that applied under my plan to any illness), both medication and tests and MD's appointments.
Different insurance plans approach all these things differently, but if your lady will be looking to you for financial assistance, I would certainly sit down and have a serious conversation with her about what her monetary expectations are. If you are not prepared to go that route, then do say so, and her reaction will be what it is.
There is much controversy about Lyme disease and other infections ('co-infections') carried by the same ticks, so there are no quick explanations of the situation. ILADS [dot] org is the main voluntary group for MDs who think progressive thoughts about diagnosis and treatment, and their website has a lot of information (maybe too much for a newbie) about Lyme and its co-infections.
To my reading and understanding, IV treatment is not always (perhaps not often) required except in very stubborn infections. I was treated by a very well known and respected LLMD (meaning Lyme-literate MD, which is patient slang for an MD who thinks more progressive thoughts about Lyme and its co-infections), and I had only oral antibiotics (pills or liquids). I think most of us here have been treated with oral meds. That keeps the expense and hassle down compared to IV meds.
Stopping treatment because one is 'feeling better' is not a good idea unless the doc is agreeable. Lyme, like tuberculosis, is a very slow-reproducing bacterium, and it is when reproducing that these bacteria are most susceptible to antibiotics because the cell wall is breached. Usual TB treatment is 18 months. My Lyme treatment was about 8-9 months. Everyone is different, but 'feeling better' is not conclusive evidence of a cure.
In your friend's situation, I would get insurance, because at a certain point, if not immediately, coverage will kick in. Insurance companies are sometimes skeptical of long term antibiotic treatment, but that's another issue.
Sorry not to have firmer answers for you. I'm sure the Canadian system seems much cleaner and tidier, but the concern I have for 'Obamacare' (which is coming soon) is that the gov't will set diagnostic and treatment requirements and standards which are in accord with so-called mainstream, CDC-driven medical approaches ... which is the long way of saying that Lyme patients will get a few weeks of antibiotics and a cheery 'good luck!' on their way out the door.
(Once the gov't controls payment, the gov't will control treatment. We have had posters here who indicate that HMOs they have had experience with also adhere to the CDC 'standard.' (CDC = Centers for Disease Control, an arm of the US government's Department of Health and Human Services.) I have heard that getting Lyme in Canada is not a good thing, and Canadians come to the US for treatment if they can afford it.)
Sorry to be a downer. Maybe someone here can give a cheerier view. Best wishes to you and your sweetie.
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