Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 , Bless your heart. Reading your message brought tears to my eyes because it makes me think about my own situation. I have cried all day today, and I think it is solely out of frustration. I feel exactly like you do, except that I have not even been given antibiotics at this point. All of the doctors that I see are really quick to pass me off to another specialist, but they all tell me, " Whatever you do, don't go see an LLMD - it is a waste of time and money. This next doctor will be able to take care of you. " Then, I get emotionally ready to see yet another doctor, list my symptoms one more time, etc., just to hear them tell me that my Lyme test is negative, so I don't have Lyme. My husband is very, very supportive of me. I know that he would do anything to make me feel better. HOWEVER, he sounds a lot like your husband - he does not get this at all! He cannot understand how my feet hurt so bad some mornings that I cannot walk, (They are all curled up in this crazy position, and they literally feel like they are locked that way.) but that other mornings I am able to get out of bed reasonably well. He cannot understand how some days I need a 3 or 4 hour nap by noon, but other days I am okay to at least go out to dinner with him. It baffles him that my hair is falling out in clumps at this point - none of the doctors seem too alarmed by it, though. He cannot understand how one minute I am having trouble thinking, the next minute I am completely exhausted, and still later in the day I am in excrutiating pain in different areas of my body. I can understand how someone would think that I was crazy, I guess. I am at that point myself. I drive down the road sometimes and forget where the heck I am going. I have left the keys in the ignition for two hours taking my youngest daughter to see the pediatrician. Sure, someone will tell you that those things are " normal " . Well, they aren't normal when they happen all day, every day, and you did not used to feel that way. I have days where one side of my body will feel numb in certain places. Lately, it has been the right side of my face, particularly around my mouth and cheek. It feels like I was given a really hefty shot of novacaine from the dentist. Other times, I get that same feeling in my shoulder and upper arm, or my leg. This almost always happens on the right side of my body. My right shoulder all the way down to my fingers has gone numb while I was sitting here typing you this note. I have to wear braces on both ankles most days just to be able to walk enough to take care of my two little ones. The pain in my heels is almost unbearable most of the time. I think that were it not for making myself suck it up and deal with the pain for the sake of my kids, I might be in a wheelchair or really close to it by now. I have been told that I had MS (ruled out - clear MRIs and spinal fluid), Lupus (ruled out with about seven negative FANAs), fibromyalgia, and that I am just plain depressed (who would NOT be at this point). I KNOW in my heart that these are all wrong diagnoses, but I cannot get any doctor to listen to me. I finally thought I was on the right track with the ID here in town who told me that he would treat me for Lyme if he thought that is what I had. He did his 'own' Lyme test here in town. His nurse told me today that it was negative. I asked where we go from here. She said that she did not know - she would ask when he comes back in on Monday. So, another weekend of bizarre symptoms and no one who really seems to give a d***. Please, please, please do not give up hope. Inform your husband, friends, whoever will listen. I carry a notebook of internet research with me whenever I think I am going to have to defend my position. I agree with you - it should not have to be this way. You are in my thoughts and prayers. Have a good weekend. > > Okay last week I shared I felt great as of day 15 of my meds (first course > of meds after what I think is a June 2006 infection). Some of my symptoms > are brain symptoms (which freak me out the worst). I was put on 100 mg Doxy, > 2x a day, for 21 days (the CDC recommendation). My ELISA was negative (in > case anyone is wondering) yet I have a lot of various symptoms of Lyme, and > risk factors of living in CT and being very active outdoors especially since > March-July 2006. > > > > Well when I finished the meds, a bunch of symptoms came right back the next > day. It started with the joint pain/swelling in hands and ankles. The next > day was brain symptoms x2 days. > > > > My appt with the LLMD is in 3 days and I am trying to be hopeful, but I am > still angry. I had hoped that the first course of meds (following CDC > guidelines) would knock it out for me (as so many doctors think it does). > Just had to vent and share that my last report that things are going well is > no longer true. > > > > I also am angry about the fact that the public (my friends, family, etc.) > don't understand Lyme. The mentality they have is like bronchitis or a strep > throat infection, they think you start an AB and it begins killing the > bacteria and then you get better, better, better, then completely resolved > in just one short course, done and over. Well it is not like that for > *everyone*. People say to me, 'How do you feel today? " , I say, " Terrible " > then they say, " Oh but you are on the meds now so you will be all better > soon. " Last night I couldn't resist and said, " But I finished the full > course already, it didn't work. " And they say, " So call your Dr. and get > more meds " , and I say, " Well that doctor doesn't believe that is the right > treatment " to which they said, " Well that makes no sense, wouldn't the > doctor want to treat you until you are better, if that med didn't work then > take a different one, or for longer. " They just think, as they do with > people with sinus infections which don't cure with the first go round of > meds, the same Dr. prescribes a new med with no complaint, they don't get it > why it is NOT done with Lyme with some doctors. Why can't the doctors > understand that it can be that way with Lyme??? Where is the logic???) > > > > I swear in 20 years or maybe longer (sadly) they will look back on Lyme and > say, " Wow, we botched the treatment for that for so long, it really was a > problem for so many and we just didn't get it back then, good thing we now > know how to treat it. " Well I don't like having this in a time when it is > understood so little! I want to reject it, to say, " I won't be a victim of > this terrible thing! " . > > > > Also the other frustrating thing is that people don't seem to believe me > (even my husband) about what I am feeling or experiencing, they can't > believe how the symptoms come and go throughout a day (hand pain in morning, > pain free in afternoon, that type of thing). > > > > Not only do I deal with the ignorant ones who don't believe Lyme is real and > don't know anything about it, but I get no sympathy from those who > disbelieve the coming and going of the symptoms. > > > > The brain fog thing is not understood by others they say, " Oh I do things > like forget a name or word all the time " . I keep saying, " But it is > DIFFERENT and WORSE, I know what that casual type thing is like and this is > NOT it. " They look at me, not understanding what I am talking about. > > > > I am trying so hard not to be afraid and scared about this but the whole > darned uncertainty of the treatment and resolution of Lyme is like a big > mystery and undeterminable type of thing. I want to think I will see the > LLMD and he will wave a wand and it will be gone, but I know that is not how > it works. > > > > Then I get those who think going to a LLMD is a quack thing and that I am > some nut looking for a weird cure with some fake product or some > over-prescribing of medicine. > > > > And it doesn't help that I swear people think I am making this up or they > think " I want to be sick to get attention " . I don't, believe me. I have > begun to not talk about it much to others as I fear their negative comments > or disbelief and I think that the resulting isolation that brings is not > good, but it is coming to that-I feel like I am weaving a cocoon around > myself. > > > > Please, if you go through this type of thing can you share it with me? Am I > the only one who experiences this? You can email me privately if you want at > christinemm@... > > Thanks for listening, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 You just told my life story Whitney. The Navy thought I was just trying to get out of work. Each and every person that reads this is being prayed for. I pray for peace of mind, peace of heart, and healing. The Lord will help me thru this. Blessings, Rochelle Whitney Koski <whitkoski@...> wrote: , Bless your heart. Reading your message brought tears to my eyes because it makes me think about my own situation. I have cried all day today, and I think it is solely out of frustration. I feel exactly like you do, except that I have not even been given antibiotics at this point. All of the doctors that I see are really quick to pass me off to another specialist, but they all tell me, " Whatever you do, don't go see an LLMD - it is a waste of time and money. This next doctor will be able to take care of you. " Then, I get emotionally ready to see yet another doctor, list my symptoms one more time, etc., just to hear them tell me that my Lyme test is negative, so I don't have Lyme. My husband is very, very supportive of me. I know that he would do anything to make me feel better. HOWEVER, he sounds a lot like your husband - he does not get this at all! He cannot understand how my feet hurt so bad some mornings that I cannot walk, (They are all curled up in this crazy position, and they literally feel like they are locked that way.) but that other mornings I am able to get out of bed reasonably well. He cannot understand how some days I need a 3 or 4 hour nap by noon, but other days I am okay to at least go out to dinner with him. It baffles him that my hair is falling out in clumps at this point - none of the doctors seem too alarmed by it, though. He cannot understand how one minute I am having trouble thinking, the next minute I am completely exhausted, and still later in the day I am in excrutiating pain in different areas of my body. I can understand how someone would think that I was crazy, I guess. I am at that point myself. I drive down the road sometimes and forget where the heck I am going. I have left the keys in the ignition for two hours taking my youngest daughter to see the pediatrician. Sure, someone will tell you that those things are " normal " . Well, they aren't normal when they happen all day, every day, and you did not used to feel that way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 and Whitney; Both your posts have brought me to tears. I, too, have experienced the frustration you both write about, but please don't give up! I have been treated for almost two years now, and finally many of my symptoms are fading, some are very nearly gone. I also had the horrible pain in my feet - - so bad that I couldn't stand to have them flat on the floor, even when sitting. The exhaustion, numb areas, pain that moves around from one place to another, diarrhea, bladder incontinence, horrible brain fog, shaking hands, jerking limbs, muscle spasms, anxiety, shortness of breath, and on and on. I had it all, and now much of it is nearly gone, or only shows itself occassionally. I've gone from spending most of my time in bed, to being able to work on the computer all day. I can now stand up long enough to cook for myself, and I can make it to the top of the stairs going to the second floor without having to stop and catch my breath. I am writing to tell you that I got better, but I am also writing to tell you about my mother. She ultimately will die of Lyme disease, and we have to keep fighting to get well so that we can spare others from experiences like hers. This is her/our story, and I apologize for the length, but I think it's important. As if just experiencing the symptoms I had weren't bad enough, having to deal with the ignorant, judgemental and fearful reactions from those around you (oftentimes people you love and thought you could trust) is in some ways more overwhelming than having to deal with the disease and its co-infections. In my case, my 75-year-old mother had come to stay with me from out of state and was experiencing a huge range of symptoms. In our quest to discover what was wrong with her, we learned she had Lyme. Then I learned I had it, too (I had either denied my symptoms or had attributed them to a number of different things; I had no idea they were related until my mother's treatment got underway, and I began to see my problems as more than " middle age " or " in my head. " ) After a year of treatment, my mother's hearing was so improved she no longer needed hearing aids; her vision so improved she could see across the room w/out glasses - something she'd been unable to do even in childhood; her knee pain so improved she could walk without a cane or walker; her bladder incontinence so improved that she no longer wet herself at night; her fluid retention and weight problems resolved to the point where she no longer needed Plus Sized clothing. Despite all the improvement she experienced during this year (and I should explain that she lived with me during this time, leaving my very-difficult-to-get-along-with father at their home in a neighboring state), and despite the fact that I kept my father and brothers informed of every test result, doctor's appointment and health development she experienced, we were met with nothing but disbelief, hostility, judgement in the absence of even an attempt to self-educate, and finally legal action. When my father obtained my mother's pharmacy records under the guise of needing them to deal with the insurance company, he decided that because of one of the meds the LLMD had her on (an anti-seizure med, designed to reduce the destructive over-activity of the brain that was causing her feet to curl and cramp, and would have ultimately resulted in neuronal death), she was being " drugged " and that I was " abusing her " and keeping her " doped up " in cahoots with the doctor. The cognitive symptoms my mother had when she arrived on my doorstep had waxed and waned during her stay with me. When she first arrived, she could not recall how she'd come to be here. Her problems were so marked at times back home, that my brother and sister-in-law had forbidden her to drive my nephews anywhere. And yet, they had stood by and done nothing. Not a doctor's appointment, trip to a psychologist, tests, nothing. I had taken her to neuropsychologist, who had ruled out dementia. That was when I started looking for some other explanation, and ultimately what led me to the doorstep of the LLMD. Anyway, because of her improvement at times (and because of her original " clean " neuropsych test), we were hopeful that with continued treatment, and perhaps some conjunctive therapies, she might one day find her cognitive impairments a thing of the past. After all, she had improved to the point where she could now read books again, and work the crosswords she loved so much. But, we were not to have that chance. After a year had passed, my father and brothers were apparently unable to remember that my mother was already quite impaired when she got here. They decided that whatever was wrong with my mom was my fault; mine and the LLMD's. Unbeknowst to me, my brother went to court and got an emergency guardianship order, which wasn't even legal in across a state line. They waited until I was out of town, and swooped in when my mother was here alone with my husband (who didn't realize the document was not worth the paper it was printed on). My brother had a friend who worked as a security guard, and he came along for the ride, delivering the worthless document in his official-looking uniform. They quite literally kidnapped my mother; the only reason her meds went with her was b/c my husband shoved them in a bag and ran after them. They didn't even take her purse, let alone her clothes or her dog. When I called that evening to check on her, my husband was beside himself. When I called my brother and father, no one would tell me where she was. They simply told me that I had abused and neglected her, that she didn't have Lyme disease, and whatever problems she had were my doing. After a few days, I discovered that they'd placed her in a nursing home. I was not permitted to see her or speak to her. I had gotten a lawyer immediately (two actually, one in each state), who told me we could fight the guardianship order, but because it was in another state, and would require what amounted to a battle of " expert witnesses, " it would cost tens of thousands of dollars that I did not have. It went before a judge, uncontested; my lawyer was at least able to make it a part of the order that I be allowed to have contact with her. My mother now has the legal status of a non-person. She can make no decisions for herself. She was left in the nursing home for about nine months, during which time my phone calls to her were " monitored " by the staff. This was doubly difficult for me, as I have my Master's degree in Social Work, and until I became too sick to work AND take care of my mother, I'd been working for a hospice and did much of my field work in nursing homes. To be labeled " a potential danger to the patient " was almost more than I could bear. After nine months had passed, my father decided that it cut into their income too much to have her in long-term care, so she was returned to his home, even though she begged my brother to get her an apartment or let her go to assisted living, because she didn't want to live with his abuse. Ironically, it was my father's abusive nature that she'd been fleeing when she came here in the first place; in discovering that she had Lyme, she finally found hope again; in being kidnapped and having her rights taken away, she now faces some of her worst nightmares on a daily basis. She forgets at times about her time here with me, and that she has (now untreated) Lyme. She is briefly relieved when I remind her about how much improvement she realized under the care of the LLMD. She has begged me to never let her forget what happened to her, although there are times when she expresses a vague feeling that something is very wrong, that I'm tempted to just reassure her that everything is fine, hoping that she will finally slip far enough into the confusion and memory lapses that haunt her to forget about what was done to her. Her hearing, vision, joint pain, bladder incontinence, all of it is back to her pre-treatment levels and then some. She has to use a walker now all the time. She can't read books or do crosswords anymore, because her aspects of her cognitive functioning are so impaired. My father recently ended up in the hospital needing a quad cardiac bypass. He had complications and was in the hospital for months. My brother's wife started going and sleeping at my parents' house at night, but my mother was alone all day and all evening. (After all, they had to do something to make it look like my " incompetent " mother wasn't being left completely to her own devices.) She really loved being left alone while she was awake though. And except for a brief period where my brothers blocked her ability to call me by having the phone company block my number from being dialed from her phone, she I and were able to talk frequently, as we had every fews days of my life prior to her kidnapping. (I was so proud of her: despite her sometimes confused state, she figured out what my brothers had done by calling the phone company, and then she confronted them with it; they denied it, but her ability to dial me was suddenly restored). During that time she also started playing the piano again, essentially re-teaching herself from the basic skill level through Book Four, where she stopped, because my father returned home again. She doesn't call me now, either. And when I call to talk to her, her voice has a horrible high, thin, anxious edge that cuts me like a knife. She won't even tell me she loves me in response to my " I love you, Mom " if he's within earshot; she doesn't want him to know it's me on the other end of the line. I offer my long, sad tale by way of illustrating just how insane the polarization of the Lyme issue has become. I know that my " dysfunctional " family probably presents an extreme example, but families and individuals who are relatively " normal " in their functioning crack under the weight of what we suffer with. How much more so the family or individual whose functioning is marginal at best; they can ill afford the additional pressures presented by ignorant and hostile medical personnel; judgemental friends, family, and employers; and the overall social pressures that come with being disenfranchised. My LLMD, whom I consider to be a very wise woman on top of being an excellent physician, offered the following anology: she said that it seemed to her that Lyme disease was experiencing a public reaction akin to that received by issues like child sexual abuse, date rape, domestic violence, and even racism in decades past. We don't want to know about what we don't want to know about. And at what price our ignorance? A heavy price indeed. . . being paid by people on both sides of the issue. I don't know what the answer is. I have struggled with whether or not to remove the family pictures from my walls. Losing my mother in this way has torn my very soul. I doubt I will ever see her again. I'm relatively certain I've been written out of my parents' will (since my mother no longer has any say about it), and whatever family heirlooms would've been handed down to me will now find themselves in the homes of my brothers. What I've lost and will lose breaks my heart: My piano, my grandmother's doll, my mother's journals, knowing that I'd be able to sit with her and hold her hand when it was finally time for her to die. . .my entire family has been taken from me over Lyme disease. In some ways, it is as though it was all lost in a terrible natural disaster. I think, at times, that this would have been easier. At least it would be over, and it would not have been blamed on me. I can do little more than pray now, and keep taking my medicine, and getting better. I would like to write a book about all this. I would especially like to spare someone else a similar grievous experience. I want to tell them to get guardianship set up themselves before someone else does; ignore the lawyers who won't tell you that other lawyers play dirty, and get away with it (with the court's blessing) every day of the week in every state in the union. I can't even manage to stay permanently mad at my family, because I'm sure they are afflicted, too. Their depression, anxiety, paranoia and rafts of physical symptoms look all too familiar to me. . . So, please, Whitney and , and anyone else who reads this, please, please don't give up. Some of us have to get well, and stay sane, and keep putting one painful foot in front of the other so that others might be spared our suffering. > > , > > Bless your heart. Reading your message brought tears to my eyes > because it makes me think about my own situation. I have cried all > day today, and I think it is solely out of frustration. > > I feel exactly like you do, except that I have not even been given > antibiotics at this point. All of the doctors that I see are really > quick to pass me off to another specialist, but they all tell > me, " Whatever you do, don't go see an LLMD - it is a waste of time > and money. This next doctor will be able to take care of you. " Then, > I get emotionally ready to see yet another doctor, list my symptoms > one more time, etc., just to hear them tell me that my Lyme test is > negative, so I don't have Lyme. > > My husband is very, very supportive of me. I know that he would do > anything to make me feel better. HOWEVER, he sounds a lot like your > husband - he does not get this at all! He cannot understand how my > feet hurt so bad some mornings that I cannot walk, (They are all > curled up in this crazy position, and they literally feel like they > are locked that way.) but that other mornings I am able to get out of > bed reasonably well. He cannot understand how some days I need a 3 or > 4 hour nap by noon, but other days I am okay to at least go out to > dinner with him. It baffles him that my hair is falling out in clumps > at this point - none of the doctors seem too alarmed by it, though. > He cannot understand how one minute I am having trouble thinking, the > next minute I am completely exhausted, and still later in the day I > am in excrutiating pain in different areas of my body. I can > understand how someone would think that I was crazy, I guess. I am at > that point myself. > > I drive down the road sometimes and forget where the heck I am going. > I have left the keys in the ignition for two hours taking my youngest > daughter to see the pediatrician. Sure, someone will tell you that > those things are " normal " . Well, they aren't normal when they happen > all day, every day, and you did not used to feel that way. > > I have days where one side of my body will feel numb in certain > places. Lately, it has been the right side of my face, particularly > around my mouth and cheek. It feels like I was given a really hefty > shot of novacaine from the dentist. Other times, I get that same > feeling in my shoulder and upper arm, or my leg. This almost always > happens on the right side of my body. My right shoulder all the way > down to my fingers has gone numb while I was sitting here typing you > this note. > > I have to wear braces on both ankles most days just to be able to > walk enough to take care of my two little ones. The pain in my heels > is almost unbearable most of the time. I think that were it not for > making myself suck it up and deal with the pain for the sake of my > kids, I might be in a wheelchair or really close to it by now. > > I have been told that I had MS (ruled out - clear MRIs and spinal > fluid), Lupus (ruled out with about seven negative FANAs), > fibromyalgia, and that I am just plain depressed (who would NOT be at > this point). I KNOW in my heart that these are all wrong diagnoses, > but I cannot get any doctor to listen to me. > > I finally thought I was on the right track with the ID here in town > who told me that he would treat me for Lyme if he thought that is > what I had. He did his 'own' Lyme test here in town. His nurse told > me today that it was negative. I asked where we go from here. She > said that she did not know - she would ask when he comes back in on > Monday. So, another weekend of bizarre symptoms and no one who really > seems to give a d***. > > Please, please, please do not give up hope. Inform your husband, > friends, whoever will listen. I carry a notebook of internet research > with me whenever I think I am going to have to defend my position. I > agree with you - it should not have to be this way. > > You are in my thoughts and prayers. Have a good weekend. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 This sounds so very like my own life story... I'm sure many of us feel that way when we read this. I add my prayers to those sent by Rochelle, and will repeat them daily. I'm 10 days post-op with a problem that's potentially caused by the Lyme arthirits I suffered with for nearly 2 years before being diagnosed. It still makes me angry and I still get scared. I still feel useless and misunderstood much of the time, though I'm at better terms with my limitations than I used to be. Here is a poem I wrote nearly a year ago on a " bad " day when I felt no one could understand: The bitter loneliness My life has become Makes me feel that I'm the only one On this island, This damnable island! Flying this life solo Partitioned by pain Brain and body wracked I'll never be the same On this island, This damnable island! They can't see it Nor do they care I try to fake it Hide my despair On this island, This damnable island! The more it hurts The less I can do Dark rainy days rule Sunny one too few On this island, This damnable island! I know I'm not a great poet, but I know most of us share these feelings. > > You just told my life story Whitney. The Navy thought I was just trying to get out of work. Each and every person that reads this is being prayed for. I pray for peace of mind, peace of heart, and healing. The Lord will help me thru this. > Blessings, > Rochelle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 hi christine you are not alone. as for me have had this disease for about 20 years. was basically ignored and was made out to be a hypochondriac. finally after being diagnosed by the girl scouts{not kidding} found a doctor with a brain! week number 12 for me on doxy. went from feeling like an 80 year old man at 41 to feeling 21 again in a few weeks. lost 50 pounds and could do cartwheels if i only knew how. you are right about the whole thing being blown as far as im concerned. it feels to me like being stuck in an episode of the twilight zone that just wont end. as i look around i can see how many people have this disease and dont even know it. its very scary if you think about it. you try to tell people and they ignore you. but theres hope just go see the new doc and take care of yourself and your family. as it turns out my daughter at 9 years old was born with this disease, and my wife has it as well but we all have new docs and are getting better. so good luck at the doc and feel better soon, kurt <christinemm@...> wrote: Okay last week I shared I felt great as of day 15 of my meds (first course of meds after what I think is a June 2006 infection). Some of my symptoms are brain symptoms (which freak me out the worst). I was put on 100 mg Doxy, 2x a day, for 21 days (the CDC recommendation). My ELISA was negative (in case anyone is wondering) yet I have a lot of various symptoms of Lyme, and risk factors of living in CT and being very active outdoors especially since March-July 2006. Well when I finished the meds, a bunch of symptoms came right back the next day. It started with the joint pain/swelling in hands and ankles. The next day was brain symptoms x2 days. My appt with the LLMD is in 3 days and I am trying to be hopeful, but I am still angry. I had hoped that the first course of meds (following CDC guidelines) would knock it out for me (as so many doctors think it does). Just had to vent and share that my last report that things are going well is no longer true. I also am angry about the fact that the public (my friends, family, etc.) don't understand Lyme. The mentality they have is like bronchitis or a strep throat infection, they think you start an AB and it begins killing the bacteria and then you get better, better, better, then completely resolved in just one short course, done and over. Well it is not like that for *everyone*. People say to me, 'How do you feel today? " , I say, " Terrible " then they say, " Oh but you are on the meds now so you will be all better soon. " Last night I couldn't resist and said, " But I finished the full course already, it didn't work. " And they say, " So call your Dr. and get more meds " , and I say, " Well that doctor doesn't believe that is the right treatment " to which they said, " Well that makes no sense, wouldn't the doctor want to treat you until you are better, if that med didn't work then take a different one, or for longer. " They just think, as they do with people with sinus infections which don't cure with the first go round of meds, the same Dr. prescribes a new med with no complaint, they don't get it why it is NOT done with Lyme with some doctors. Why can't the doctors understand that it can be that way with Lyme??? Where is the logic???) I swear in 20 years or maybe longer (sadly) they will look back on Lyme and say, " Wow, we botched the treatment for that for so long, it really was a problem for so many and we just didn't get it back then, good thing we now know how to treat it. " Well I don't like having this in a time when it is understood so little! I want to reject it, to say, " I won't be a victim of this terrible thing! " . Also the other frustrating thing is that people don't seem to believe me (even my husband) about what I am feeling or experiencing, they can't believe how the symptoms come and go throughout a day (hand pain in morning, pain free in afternoon, that type of thing). Not only do I deal with the ignorant ones who don't believe Lyme is real and don't know anything about it, but I get no sympathy from those who disbelieve the coming and going of the symptoms. The brain fog thing is not understood by others they say, " Oh I do things like forget a name or word all the time " . I keep saying, " But it is DIFFERENT and WORSE, I know what that casual type thing is like and this is NOT it. " They look at me, not understanding what I am talking about. I am trying so hard not to be afraid and scared about this but the whole darned uncertainty of the treatment and resolution of Lyme is like a big mystery and undeterminable type of thing. I want to think I will see the LLMD and he will wave a wand and it will be gone, but I know that is not how it works. Then I get those who think going to a LLMD is a quack thing and that I am some nut looking for a weird cure with some fake product or some over-prescribing of medicine. And it doesn't help that I swear people think I am making this up or they think " I want to be sick to get attention " . I don't, believe me. I have begun to not talk about it much to others as I fear their negative comments or disbelief and I think that the resulting isolation that brings is not good, but it is coming to that-I feel like I am weaving a cocoon around myself. Please, if you go through this type of thing can you share it with me? Am I the only one who experiences this? You can email me privately if you want at christinemm@.... Thanks for listening, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 , What a great post many of us can understand your feelings and I can personally add 20 years to it of symptoms, being told by so many doctors that I am nuts, take a happy pill, all the treatments I tried to get well, all the money, loss of income on and on because I did not know what was wrong. I was just diagnosed in February and struggled to find a doctor in VA. After many months I am finally seeing a doctor in MO for treatment because I have so many problems and a great amount of pain from FM, VVS and IC. Since you think this is recent activation of infection with Lyme, you should have a resolution of you symptoms with an experienced LLMD, but I agree it will take more than a month of abx. Take care, At 10:38 AM 8/11/2006, you wrote: >Okay last week I shared I felt great as of day 15 of my meds (first course >of meds after what I think is a June 2006 infection). Some of my symptoms >are brain symptoms (which freak me out the worst). I was put on 100 mg Doxy, >2x a day, for 21 days (the CDC recommendation). My ELISA was negative (in >case anyone is wondering) yet I have a lot of various symptoms of Lyme, and >risk factors of living in CT and being very active outdoors especially since >March-July 2006. > >Well when I finished the meds, a bunch of symptoms came right back the next >day. It started with the joint pain/swelling in hands and ankles. The next >day was brain symptoms x2 days. > >My appt with the LLMD is in 3 days and I am trying to be hopeful, but I am >still angry. I had hoped that the first course of meds (following CDC >guidelines) would knock it out for me (as so many doctors think it does). >Just had to vent and share that my last report that things are going well is >no longer true. > >I also am angry about the fact that the public (my friends, family, etc.) >don't understand Lyme. The mentality they have is like bronchitis or a strep >throat infection, they think you start an AB and it begins killing the >bacteria and then you get better, better, better, then completely resolved >in just one short course, done and over. Well it is not like that for >*everyone*. People say to me, 'How do you feel today? " , I say, " Terrible " >then they say, " Oh but you are on the meds now so you will be all better >soon. " Last night I couldn't resist and said, " But I finished the full >course already, it didn't work. " And they say, " So call your Dr. and get >more meds " , and I say, " Well that doctor doesn't believe that is the right >treatment " to which they said, " Well that makes no sense, wouldn't the >doctor want to treat you until you are better, if that med didn't work then >take a different one, or for longer. " They just think, as they do with >people with sinus infections which don't cure with the first go round of >meds, the same Dr. prescribes a new med with no complaint, they don't get it >why it is NOT done with Lyme with some doctors. Why can't the doctors >understand that it can be that way with Lyme??? Where is the logic???) > >I swear in 20 years or maybe longer (sadly) they will look back on Lyme and >say, " Wow, we botched the treatment for that for so long, it really was a >problem for so many and we just didn't get it back then, good thing we now >know how to treat it. " Well I don't like having this in a time when it is >understood so little! I want to reject it, to say, " I won't be a victim of >this terrible thing! " . > >Also the other frustrating thing is that people don't seem to believe me >(even my husband) about what I am feeling or experiencing, they can't >believe how the symptoms come and go throughout a day (hand pain in morning, >pain free in afternoon, that type of thing). > >Not only do I deal with the ignorant ones who don't believe Lyme is real and >don't know anything about it, but I get no sympathy from those who >disbelieve the coming and going of the symptoms. > >The brain fog thing is not understood by others they say, " Oh I do things >like forget a name or word all the time " . I keep saying, " But it is >DIFFERENT and WORSE, I know what that casual type thing is like and this is >NOT it. " They look at me, not understanding what I am talking about. > >I am trying so hard not to be afraid and scared about this but the whole >darned uncertainty of the treatment and resolution of Lyme is like a big >mystery and undeterminable type of thing. I want to think I will see the >LLMD and he will wave a wand and it will be gone, but I know that is not how >it works. > >Then I get those who think going to a LLMD is a quack thing and that I am >some nut looking for a weird cure with some fake product or some >over-prescribing of medicine. > >And it doesn't help that I swear people think I am making this up or they >think " I want to be sick to get attention " . I don't, believe me. I have >begun to not talk about it much to others as I fear their negative comments >or disbelief and I think that the resulting isolation that brings is not >good, but it is coming to that-I feel like I am weaving a cocoon around >myself. > >Please, if you go through this type of thing can you share it with me? Am I >the only one who experiences this? You can email me privately if you want at ><mailto:christinemm%40snet.net>christinemm@.... > >Thanks for listening, > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Oh, , my heart goes out to you. It's difficult enough to grasp what Lyme is doing to you much less explain it to others. The general public knows very little about Lyme. I got used to people saying, " But you look so good! " when I told them I had Lyme. I'd then explain about Lyme flush, which usually made them feel bad. I don't want to make others feel bad so I eventually gave up. And, like you, I've stopped offering information. I'm quite forthcoming when people ask me about Lyme because they've expressed an interest, so information is getting disseminated to people who are receptive to it. My husband has MS. When he was first diagnosed his family wanted to know why he didn't " go to Boston and get cured " because they knew of someone who had MS who did that. It did us know good to tell them that MS can't be cured. They were not ready to hear the truth about MS. He asserted that it was his disease and he was going to handle it his way. Eventually they gave up, opened their minds, and now his sister rides in the MS Bike-a-thon each year. As for LLMDs and why other doctors don't offer longer treatment, I tell people that the course of treatment for Lyme is very controversial. People usually like a good juicy controversy, so I offer up both sides of the controversy, including the threat to the medical licenses of LLMDs. I'm so glad you found this group because all of us here understand what you're going through. Vent away! And tell us what your LLMD says! Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Whitney, I'm no doctor, but some of your symptoms sound like you have an underactive thyroid (your hair falling out, exhaustion). You need to see a wholistic doctor who will take into account all of your symptoms. If you can't get to see an LLMD, at least find an osteopath (DO -- like an MD, but trained to treat the whole person) who is willing to work with you. A good general practitioner will be open to learning about Lyme to help you get better; that means taking reading material to him/her and I'd start with Burrascano's protocol (you can get it at ilads.org). Lyme disrupts every system of the body. I have depression, a sleep disorder, and hypothyroidism. Are they all caused by Lyme? I don't know, but it doesn't really matter because I'm treating them and intend to keep treating them. Jessie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Missweather, your story is heartbreaking. I hope that putting it into writing has helped you some, although there is nothing that can permanently ease the pain you've suffered. I'll bet there's not one of us who has wondered why we continue to fight this nasty disease -- Missweather's mother is why. Jessie > > > > I can do little more than pray now, and keep taking my medicine, and > getting better. I would like to write a book about all this. I > would especially like to spare someone else a similar grievous > experience. I want to tell them to get guardianship set up > themselves before someone else does; ignore the lawyers who won't > tell you that other lawyers play dirty, and get away with it (with > the court's blessing) every day of the week in every state in the > union. I can't even manage to stay permanently mad at my family, > because I'm sure they are afflicted, too. Their depression, > anxiety, paranoia and rafts of physical symptoms look all too > familiar to me. . . So, please, Whitney and , and anyone > else who reads this, please, please don't give up. Some of us have > to get well, and stay sane, and keep putting one painful foot in > front of the other so that others might be spared our suffering. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 , thank you for sharing your poem with us. The imagery of being alone on a damnable island speaks to me and I intend to use it in a visualization (me swimming away and leaving all the spirochetes behind!). Jessie > > > > Here is a poem I wrote nearly a year ago on a " bad " day when I felt > no one could understand: > > The bitter loneliness > My life has become > Makes me feel that > I'm the only one > On this island, > This damnable island! > > Flying this life solo > Partitioned by pain > Brain and body wracked > I'll never be the same > On this island, > This damnable island! > > They can't see it > Nor do they care > I try to fake it > Hide my despair > On this island, > This damnable island! > > The more it hurts > The less I can do > Dark rainy days rule > Sunny one too few > On this island, > This damnable island! > > I know I'm not a great poet, but I know most of us share these > feelings. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Jessie, Thanks for your note. I have " supposedly " been tested for an underactive thyroid because that was the doctor's first suspicion when some of this started so long ago. Everytime they take blood for that, they tell me that it is " normal " . I am at my wit's end. I am having one of those days where I am so angry and frustrated and tired of this that I just want to scream at the top of my lungs. I am losing hope, and I am losing it rapidly. If no one is going to believe me and no one is going to help me, then why do I keep wasting my time waiting for someone to miraculously appear that can fix my problems? I just told my husband a few minutes ago that I feel like I have to put on this show where I do my best to act like there is nothing wrong with me. I am having one of those days where my heels hurt so bad that I do not think I can take another step. So, my husband's solution is to sit down. What he doesn't seem to understand is that they hurt even when I have my feet resting on the floor, even when I am laying in bed. What I want more than anything right now is a nap, but I am scared to even lay down for fear that the pain will be so bad that I will not be able to sleep. My face is still numb on the right side. Yesterday, I tried to read to my three-year-old, and I kept messing up the words. It was like my brain saw the word on the page, knew what it was, but a different set of words were coming out of my mouth. I think that I am going insane. I get to a point (where I am at today) where I start to believe all the doctors. I start to believe that it is all in my head. I have tried to take an entire notebook of Lyme information to these doctors, including Burrascano's Guidelines (of which I have almost 3/4 of the symptoms, I think). They all see it; they all say that I might be right, but that they are not the ones to make that call. So, what am I supposed to do at this point? My husband is completely against seeing an LLMD becuase they do not take insurance and these doctors have told him that they are almost always in it for the money. I am scared and lonely and tired. I have a three year old and a seven month old to take care of. I am no decent mother these days. I am not a good wife these days. I feel worthless. I often wonder if they are ever going to figure out what it is that is wrong with me. I am 26 years old and I feel like I am 75. I am done ranting now. Sorry for going on for so long. It just feels good to finally have people around me who can totally relate to what I am talking about. At least you all do not think that I am nuts. Whitney > > Whitney, > > I'm no doctor, but some of your symptoms sound like you have an > underactive thyroid (your hair falling out, exhaustion). You need to > see a wholistic doctor who will take into account all of your > symptoms. If you can't get to see an LLMD, at least find an osteopath > (DO -- like an MD, but trained to treat the whole person) who is > willing to work with you. A good general practitioner will be open to > learning about Lyme to help you get better; that means taking reading > material to him/her and I'd start with Burrascano's protocol (you can > get it at ilads.org). > > Lyme disrupts every system of the body. I have depression, a sleep > disorder, and hypothyroidism. Are they all caused by Lyme? I don't > know, but it doesn't really matter because I'm treating them and > intend to keep treating them. > > Jessie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2006 Report Share Posted August 12, 2006 Jessie MacMillan wrote: > but some of your symptoms sound like you have an > underactive thyroid (your hair falling out, exhaustion). Aha! My has started doing that again after stopping for awhile. I've been on a slightly lower dose of thyroid hormone for about a month. Good thing I began going back to a higher dose already. Deanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Whitney, Your husband may be completely against seeing an LLMD, but you need to see one. You also need to get copies of all your test results. There's some controversy over what " normal " is for thyroid tests -- and your normal may be lower or higher than what a lab considers normal. If you don't go to an LLMD, you can consider trying Buhner's protocol. Buhner wrote a book called " Healing Lyme " that explains how to treat Lyme with herbs and supplements. It's better if you try the protocol with the knowledge of a doctor, but if you can't get treatment you could try it on your own. I still think going to an LLMD is your best bet. Go for an evaluation if nothing else. And be sure to take copies of all your test results. Jessie > > > I have tried to take an entire notebook of Lyme information to these > doctors, including Burrascano's Guidelines (of which I have almost > 3/4 of the symptoms, I think). They all see it; they all say that I > might be right, but that they are not the ones to make that call. So, > what am I supposed to do at this point? My husband is completely > against seeing an LLMD becuase they do not take insurance and these > doctors have told him that they are almost always in it for the > money. I am scared and lonely and tired. I have a three year old and > a seven month old to take care of. I am no decent mother these days. > I am not a good wife these days. I feel worthless. I often wonder if > they are ever going to figure out what it is that is wrong with me. I > am 26 years old and I feel like I am 75. > > > I am done ranting now. Sorry for going on for so long. It just feels > good to finally have people around me who can totally relate to what > I am talking about. At least you all do not think that I am nuts. > > Whitney Quote Link to comment Share on other sites More sharing options...
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