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How do you guys deal with the bitterness and anger involved in all of this
As if it wasn't tough enough to deal with the overwhelming physical conditions and anxiety and depression that Lyme causes, I now am feeling bitter and angry not only by being overlooked and pushed aside by doctors for so long, but so very jealous of "normal" people. I can't watch tv lately without sobbing because I don't feel we'll enough to do all the things that they can do... that i once did!
The weather is beautiful now and I pushed myself to get out of bed yesterday to play with my kids, only to sob bc it was much to painful. Everything hurts and I'm so dizzy and feel faint walking to the bathroom. My husband hugged me and told me to go back to bed. All I could do was angrily yell "but I don't want to go back to bed! I want to play and plant flowers and just be normal! God damnit!"
Sorry, I know this post is dramatic and could come off as whiny, but I just don't know how to displace all of this resentment. You all are so positive and encouraging. How do I get to that place? Week 3 on doxy and I am a mess! I am not even close to the dosage levels that will really kick this diseases butt and that scares me to know that after I see my LLMD and get on a more serious plan that I'm going to feel even worse. Holy moly, i'm overwhelmed!
The weather is beautiful now and I pushed myself to get out of bed yesterday to play with my kids, only to sob bc it was much to painful. Everything hurts and I'm so dizzy and feel faint walking to the bathroom. My husband hugged me and told me to go back to bed. All I could do was angrily yell "but I don't want to go back to bed! I want to play and plant flowers and just be normal! God damnit!"
Sorry, I know this post is dramatic and could come off as whiny, but I just don't know how to displace all of this resentment. You all are so positive and encouraging. How do I get to that place? Week 3 on doxy and I am a mess! I am not even close to the dosage levels that will really kick this diseases butt and that scares me to know that after I see my LLMD and get on a more serious plan that I'm going to feel even worse. Holy moly, i'm overwhelmed!
A little over a year ago I could have written your post! I know EXACTLY how you feel, except I only have 1 little girl. Not to diminish any of what you're feeling, I think that some of that overwhelmed feeling is part of the disease. Remember, you have a brain infection. It affects your ability to think straight, express yourself, manage emotions, and remember things, whether you realize it or not.
I can remember looking at my messy bathroom counter and feeling hopelessly overwhelmed at the thought of finding the toothpaste to brush my teeth. I certainly couldn't think about what we would eat at our next meal or what groceries we needed. I was lucky to get a half hour of activity in per day. It was all just too much for my really messed up brain and body.
I also remember obsessing about how I'd been wronged and how much I'd suffered because of the ridiculous state of things regarding Lyme Disease. Here it is, the worst infection complex known to mankind with devastating effects, and yet nearly all doctors are oblivious to it all, ignoring our pleas. My husband got really tired of my rants. I had to consciously remind myself not to talk about how angry and frustrated I was/am.
I learned to say, "Later. I will worry about/deal with/do that later." This applies to most everything (except for getting something to eat!). I couldn't go do something fun with my daughter, but I told myself I would be able to do that later. I couldn't keep up the house like I wanted, but I knew I could later. I had to creep downstairs to minimize the pain of walking, but I knew that later, it wouldn't hurt anymore. While treating Lyme can be as bad as chemo in some people, you can take comfort in knowing that you will eventually get better.
The good news of my illness is I believe my daughter has learned more compassion for those who aren't well. She's had to grow up a bit and realize that she can't always do or get what she wants when Mommy doesn't feel good. She's better now at 6 than she was at 4, of course, but she prays for my healing everyday on her own. I think that later on she'll have trouble remembering this time in her life, so in some ways, I'm glad she was little when we had to deal with this.
Just remember that the anxiety, agitation, and feeling overwhelmed are not just emotional reactions, they're physical symptoms. They will ease up over time, but not as fast as you'd like. I was eventually able to turn my anger and passion outwards. As my Bartonella anxiety waned and my Lyme agitation settled down, I am much calmer. As I'm much better now, I am much less angry for myself, but rather for people still suffering, especially the people who cannot get treated because they don't have the resources and support they need. (I still tell my husband "stupid doctor" stories, though, just because they're so unbelievable.)
If you're the reading type, then you might consider reading about Lyme and coinfections. I educated myself about the disease by reading all kinds of articles and even summaries of some medical studies to learn more about this mysterious and sophisticated bacteria. In the first several months, I remembered a fraction of what I read. I also couldn't read much at one time before I got tired. But over time, more of it sunk in. I have learned more about human biology lately than I ever learned in school or college. Just be careful to avoid the topics that make you mad. Save those for later.
About three months into treatment I finally felt up to reading "Cure Unknown." I couldn't put it down and read it in less than a week. Some of the info I pass on to others came from this book. It is very well researched and yet she used only about half her material in order to keep the book readable. If your husband has any bandwidth at all, you might suggest he read it. He'll better understand what you're going through.
Slowly, you'll be able to go back to "normal." It will take time. I was sure I'd be well in a year. Well, here I am 16 months later, still hobbled by a stubborn case of Babesia. I want to get well, but I have to go slow on the treatment or my body gets overwhelmed and I get too sick, requiring a month to settle back down and resume treatment again. *Sigh* Every night after my Malarone dose I feel my spleen slowly swell up again as it goes to work filtering out Babesia. I kept thinking I still had some Lyme rib pain left over on the left side, until I realized it was my swollen spleen and stomach pushing up against the inside and underside of my ribs. Sheesh.
I've had to reset my expectations often. It greatly reduces stress, as most frustration and anger come from missed expectations. You can increase your expectations later. ;)
I can remember looking at my messy bathroom counter and feeling hopelessly overwhelmed at the thought of finding the toothpaste to brush my teeth. I certainly couldn't think about what we would eat at our next meal or what groceries we needed. I was lucky to get a half hour of activity in per day. It was all just too much for my really messed up brain and body.
I also remember obsessing about how I'd been wronged and how much I'd suffered because of the ridiculous state of things regarding Lyme Disease. Here it is, the worst infection complex known to mankind with devastating effects, and yet nearly all doctors are oblivious to it all, ignoring our pleas. My husband got really tired of my rants. I had to consciously remind myself not to talk about how angry and frustrated I was/am.
I learned to say, "Later. I will worry about/deal with/do that later." This applies to most everything (except for getting something to eat!). I couldn't go do something fun with my daughter, but I told myself I would be able to do that later. I couldn't keep up the house like I wanted, but I knew I could later. I had to creep downstairs to minimize the pain of walking, but I knew that later, it wouldn't hurt anymore. While treating Lyme can be as bad as chemo in some people, you can take comfort in knowing that you will eventually get better.
The good news of my illness is I believe my daughter has learned more compassion for those who aren't well. She's had to grow up a bit and realize that she can't always do or get what she wants when Mommy doesn't feel good. She's better now at 6 than she was at 4, of course, but she prays for my healing everyday on her own. I think that later on she'll have trouble remembering this time in her life, so in some ways, I'm glad she was little when we had to deal with this.
Just remember that the anxiety, agitation, and feeling overwhelmed are not just emotional reactions, they're physical symptoms. They will ease up over time, but not as fast as you'd like. I was eventually able to turn my anger and passion outwards. As my Bartonella anxiety waned and my Lyme agitation settled down, I am much calmer. As I'm much better now, I am much less angry for myself, but rather for people still suffering, especially the people who cannot get treated because they don't have the resources and support they need. (I still tell my husband "stupid doctor" stories, though, just because they're so unbelievable.)
If you're the reading type, then you might consider reading about Lyme and coinfections. I educated myself about the disease by reading all kinds of articles and even summaries of some medical studies to learn more about this mysterious and sophisticated bacteria. In the first several months, I remembered a fraction of what I read. I also couldn't read much at one time before I got tired. But over time, more of it sunk in. I have learned more about human biology lately than I ever learned in school or college. Just be careful to avoid the topics that make you mad. Save those for later.
About three months into treatment I finally felt up to reading "Cure Unknown." I couldn't put it down and read it in less than a week. Some of the info I pass on to others came from this book. It is very well researched and yet she used only about half her material in order to keep the book readable. If your husband has any bandwidth at all, you might suggest he read it. He'll better understand what you're going through.
Slowly, you'll be able to go back to "normal." It will take time. I was sure I'd be well in a year. Well, here I am 16 months later, still hobbled by a stubborn case of Babesia. I want to get well, but I have to go slow on the treatment or my body gets overwhelmed and I get too sick, requiring a month to settle back down and resume treatment again. *Sigh* Every night after my Malarone dose I feel my spleen slowly swell up again as it goes to work filtering out Babesia. I kept thinking I still had some Lyme rib pain left over on the left side, until I realized it was my swollen spleen and stomach pushing up against the inside and underside of my ribs. Sheesh.
I've had to reset my expectations often. It greatly reduces stress, as most frustration and anger come from missed expectations. You can increase your expectations later. ;)
Good for you. You got moxie, as they used to say.
I wouldn't freak about the CMV or EBV. They are what they are IF you have them, and your immune system will largely suppress them to my understanding. (Not medically trained here!)
-- CMV is in the herpes virus family, so you're probably stuck with that till a cure is found for all herpes infections.
-- EBV: "Almost all people who are infected with EBV recover completely in about one to three months. Neurological changes usually completely resolve, although a few adults may have some deficits. Although most infections become latent, most remain asymptomatic. There are ongoing efforts to develop a vaccine against EBV, but these have not been successful to date. New medications are being developed to treat mononucleosis and EBV."
The docs who 'discovered' Lyme disease were rheumatologists and neurologists and infectious disease (ID) docs, and some of the original docs are STILL in the field, clinging madly to their initial impressions of Lyme. (You know the story of the elephant and the blind men? Yeah, like that.)
These docs are not going to change their minds, so the only thing to do is find a Lyme specialist. Since you're in the DC area, you have the advantage of having several states in which to find an LLMD (patient slang for 'Lyme-literate MD', or a doc who 'gets' Lyme.) State medical boards set standards of practice and treatment, and in some states like Texas, the LLMDs have been largely driven out or gone underground. It's why we don't put LLMD names in public here, to avoid ratting out a doc.
So you have Virginia and Maryland and DC at least to choose from.
How to find an LLMD? There are local or state Lyme groups all over, and a little googling will find them. Try searches like "LLMD virginia" or "Lyme disease virginia". Also email to
contact [at] ILADS [org]
and tell them where you're located and how far you can travel. ILADS [Intl Lyme and Associated Diseases Society] is the main voluntary group for Lyme specialists, who can be of any discipline (internal medicine, GP, internist, etc.) but are seldom found among the ranks of infectious disease (ID) docs and rheumatologists (which logic would indicate should be good at Lyme, but they've drunk the koolaid). My own LLMD trained as an immunologist.
There is no test to become an LLMD, so there are some crackpots out there, and if you accidentally see one, then go see another one. I particularly dislike docs who try to sell you vitamins out of their offices. Some may do it because drugstore vitamins can be very poor quality, but I've heard too many stories of docs peddling their favorite brand or oddball treatments. Buyer (and patient) beware.
Many LLMDs don't take insurance, but you can submit the bills to your insurance company. Mine had no problem with that.
Your LLMD may be able to recommend a GP for you, since LLMDs can't keep a focus on Lyme if they are treating sprained ankles. So many of us no longer had a GP or internist by the time we got to an LLMD that it was a matter of starting over. Your LLMD may know of a friendly internist/GP who accepts the LLMD-style view of Lyme and its coinfections.
You mention children -- if you're planning to have more, I'd talk to your LLMD about it before proceeding. Babies don't always get Lyme from the mother, but I don't know the details, and your OB might need to be educated or gone around.
For your reading pleasure, at the ILADS website (which rambles around) is a link to Burrascano's treatment guidelines. They've been amended and added to over time, and it's written for docs, but still accessible (meaning understandable) to mere patients.
I think I recall that magnesium (Mg) deficiency doesn't readily show on blood tests, because the body keeps pulling it out of stores to keep the blood levels stable. When the Mg well runs dry, then muscle aches and spasms and twitches and brain fog start, but MG is readily replaced by supplements, since the Lyme bacteria use up Mg in their rude little reproductive efforts. And the American diet is relatively deficient in Mg too. You may want to supplement (it worked for me), and if so, a formulation ending in "-ate" is, so I have read, the most absorbable by the body. Mg malate, orotate, citrate, orotate, etc. I take one (even now) with citrate, aspartate and orotate combined. Good stuff. CalMag, no; I've been told it's not very absorbable by the body.
You don't need to tell your current docs who you are going to see. You may need them again sometime, and no need to taint the relationship.
End of data dump. Keep us posted! You're on your way. :)
I wouldn't freak about the CMV or EBV. They are what they are IF you have them, and your immune system will largely suppress them to my understanding. (Not medically trained here!)
-- CMV is in the herpes virus family, so you're probably stuck with that till a cure is found for all herpes infections.
-- EBV: "Almost all people who are infected with EBV recover completely in about one to three months. Neurological changes usually completely resolve, although a few adults may have some deficits. Although most infections become latent, most remain asymptomatic. There are ongoing efforts to develop a vaccine against EBV, but these have not been successful to date. New medications are being developed to treat mononucleosis and EBV."
The docs who 'discovered' Lyme disease were rheumatologists and neurologists and infectious disease (ID) docs, and some of the original docs are STILL in the field, clinging madly to their initial impressions of Lyme. (You know the story of the elephant and the blind men? Yeah, like that.)
These docs are not going to change their minds, so the only thing to do is find a Lyme specialist. Since you're in the DC area, you have the advantage of having several states in which to find an LLMD (patient slang for 'Lyme-literate MD', or a doc who 'gets' Lyme.) State medical boards set standards of practice and treatment, and in some states like Texas, the LLMDs have been largely driven out or gone underground. It's why we don't put LLMD names in public here, to avoid ratting out a doc.
So you have Virginia and Maryland and DC at least to choose from.
How to find an LLMD? There are local or state Lyme groups all over, and a little googling will find them. Try searches like "LLMD virginia" or "Lyme disease virginia". Also email to
contact [at] ILADS [org]
and tell them where you're located and how far you can travel. ILADS [Intl Lyme and Associated Diseases Society] is the main voluntary group for Lyme specialists, who can be of any discipline (internal medicine, GP, internist, etc.) but are seldom found among the ranks of infectious disease (ID) docs and rheumatologists (which logic would indicate should be good at Lyme, but they've drunk the koolaid). My own LLMD trained as an immunologist.
There is no test to become an LLMD, so there are some crackpots out there, and if you accidentally see one, then go see another one. I particularly dislike docs who try to sell you vitamins out of their offices. Some may do it because drugstore vitamins can be very poor quality, but I've heard too many stories of docs peddling their favorite brand or oddball treatments. Buyer (and patient) beware.
Many LLMDs don't take insurance, but you can submit the bills to your insurance company. Mine had no problem with that.
Your LLMD may be able to recommend a GP for you, since LLMDs can't keep a focus on Lyme if they are treating sprained ankles. So many of us no longer had a GP or internist by the time we got to an LLMD that it was a matter of starting over. Your LLMD may know of a friendly internist/GP who accepts the LLMD-style view of Lyme and its coinfections.
You mention children -- if you're planning to have more, I'd talk to your LLMD about it before proceeding. Babies don't always get Lyme from the mother, but I don't know the details, and your OB might need to be educated or gone around.
For your reading pleasure, at the ILADS website (which rambles around) is a link to Burrascano's treatment guidelines. They've been amended and added to over time, and it's written for docs, but still accessible (meaning understandable) to mere patients.
I think I recall that magnesium (Mg) deficiency doesn't readily show on blood tests, because the body keeps pulling it out of stores to keep the blood levels stable. When the Mg well runs dry, then muscle aches and spasms and twitches and brain fog start, but MG is readily replaced by supplements, since the Lyme bacteria use up Mg in their rude little reproductive efforts. And the American diet is relatively deficient in Mg too. You may want to supplement (it worked for me), and if so, a formulation ending in "-ate" is, so I have read, the most absorbable by the body. Mg malate, orotate, citrate, orotate, etc. I take one (even now) with citrate, aspartate and orotate combined. Good stuff. CalMag, no; I've been told it's not very absorbable by the body.
You don't need to tell your current docs who you are going to see. You may need them again sometime, and no need to taint the relationship.
End of data dump. Keep us posted! You're on your way. :)
Mogogal- I can't believe that you had bad tests and they still wouldn't help you!!!! That is insane! I would be asking for the nut house if that were the case! I am so sorry you were treated that way. So very happy that you found a good doctor and are on the mend:)
Jackie- seriously, you're the best! My personal cheerleader and proof that there is hope! Thanks for everything:)
The doctor's comments about CMV and EBV freaked me out so much that I asked her to write up a lab slip, as my pcp has pretty much dropped me. I just looked over the slip and checked off magnesium to be tested as well. With my high blood calcium, my phosphorus has been checked, but never magnesium. I took the liberty of ordering it for myself... so there! She is also testing sed rate again! It drives me nuts how they are so hung up on the rheum tests!!! I feel like screaming at them "if we continue to wait this out, those rheum tests will be good and positive, but how about we tackle the source, so I don't get to that point?" Jeesh! If I get my brain back, I'm going to grad school for a medical degree!
Jackie- seriously, you're the best! My personal cheerleader and proof that there is hope! Thanks for everything:)
The doctor's comments about CMV and EBV freaked me out so much that I asked her to write up a lab slip, as my pcp has pretty much dropped me. I just looked over the slip and checked off magnesium to be tested as well. With my high blood calcium, my phosphorus has been checked, but never magnesium. I took the liberty of ordering it for myself... so there! She is also testing sed rate again! It drives me nuts how they are so hung up on the rheum tests!!! I feel like screaming at them "if we continue to wait this out, those rheum tests will be good and positive, but how about we tackle the source, so I don't get to that point?" Jeesh! If I get my brain back, I'm going to grad school for a medical degree!
Not a fool!!
A fool would sit at home and WISH to get well.
You, my dear, are out there pushing the boundaries and taking care of business.
It's the clueless docs who are fools. Let's not be getting it all mixed up. :)
I went through TWENTY docs before I found an LLMD, and I was really good at apologizing to the many docs for how I felt. So I hear you.
Not a fool! And if you don't have Lyme, an LLMD will tell you that too. And will give you ideas of what else it might be. But for now, plow ahead.
You go, girl. You're on your way. Yay!
A fool would sit at home and WISH to get well.
You, my dear, are out there pushing the boundaries and taking care of business.
It's the clueless docs who are fools. Let's not be getting it all mixed up. :)
I went through TWENTY docs before I found an LLMD, and I was really good at apologizing to the many docs for how I felt. So I hear you.
Not a fool! And if you don't have Lyme, an LLMD will tell you that too. And will give you ideas of what else it might be. But for now, plow ahead.
You go, girl. You're on your way. Yay!
Most of us have been through many doctors until we found our LLMD.
At least you have the appointment coming up so hang in there. You could start the doxy and be a step ahead.
I had EBV, mono, CFS and countless other illnesses from the mainstream docs . Since Lyme had been in my body over 20 years all my blood tests were bad. One doctor kicked me out of her office because she couldn't say, "I don't know what is wrong with you" and got mad at me for demanding answers.
They are the ones that should feel like fools. Not you!
At least you have the appointment coming up so hang in there. You could start the doxy and be a step ahead.
I had EBV, mono, CFS and countless other illnesses from the mainstream docs . Since Lyme had been in my body over 20 years all my blood tests were bad. One doctor kicked me out of her office because she couldn't say, "I don't know what is wrong with you" and got mad at me for demanding answers.
They are the ones that should feel like fools. Not you!
Thank you both for your sympathetic remarks! Nothing feels worse than being alone, so i truly appreciate your admitting that you've had moments of anger.
Fantastic timing as the "LLMD" appt didn't go so well just now. Remember how lucky I felt last Friday to have found an LLMD that takes insurance? Well, as usual, if it sounds to good to be true it is. She wasn't actually an LLMD she was a doctor who believes that Lyme actually exists, but beyond treating it with a 4 week course (longer than most doctors) with doxy... she knew nothing. She looked at the blood results, told me it was possible that I had Lyme and to give the doxy another week... that was it! Oh wait she did tell me to have my pcp test me for CMV and EBV, but "there is no treatment for those viruses". Fabulous, please add some more hopelessness to my shoulders! Thank god, I did not cancel the appt with an actual LLMD that ILADS recommended, just another 2 week wait! Pooh, such a bummer! I was really hoping this was the start... feel like a big fool:(
Fantastic timing as the "LLMD" appt didn't go so well just now. Remember how lucky I felt last Friday to have found an LLMD that takes insurance? Well, as usual, if it sounds to good to be true it is. She wasn't actually an LLMD she was a doctor who believes that Lyme actually exists, but beyond treating it with a 4 week course (longer than most doctors) with doxy... she knew nothing. She looked at the blood results, told me it was possible that I had Lyme and to give the doxy another week... that was it! Oh wait she did tell me to have my pcp test me for CMV and EBV, but "there is no treatment for those viruses". Fabulous, please add some more hopelessness to my shoulders! Thank god, I did not cancel the appt with an actual LLMD that ILADS recommended, just another 2 week wait! Pooh, such a bummer! I was really hoping this was the start... feel like a big fool:(
I hear you both. I've been well for a couple of years now, and I still am sad for the things I missed and the things that I just don't remember about the Lyme years.
It's okay to be angry about it -- in fact, I think it's good. It means you are fighting back. We all have our down moments (and hours and days) when dealing with Lyme, but the point is that you are both dealing with it and not just climbing in the closet and staying there.
Hang on, girlfriends. Getting well is the best revenge against the bugz.
It's okay to be angry about it -- in fact, I think it's good. It means you are fighting back. We all have our down moments (and hours and days) when dealing with Lyme, but the point is that you are both dealing with it and not just climbing in the closet and staying there.
Hang on, girlfriends. Getting well is the best revenge against the bugz.
You are not alone. I think we all felt like you did at one point. It's very overwhelming. I couldn't walk at first.
My fiancé helped me. He met me "well" and he said to me "these are the cards we've been dealt so we have to deal with it."
Believe me, I still cry for my past life but after awhile you learn to accept what you can't change and move forward to get better.
We are here for you whenever you need to vent.
My fiancé helped me. He met me "well" and he said to me "these are the cards we've been dealt so we have to deal with it."
Believe me, I still cry for my past life but after awhile you learn to accept what you can't change and move forward to get better.
We are here for you whenever you need to vent.
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