Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 glad to hear from you . This is a long, hard and difficult illness, and so i hope to be here and help you. i am 13 and very knowledgeable on Lyme. I was sick 1 year, diagnosed with CDH (chronic daily headache), and fibro- but soon discovered it was Lyme (1/2 year ago) and got 2 negative before research told us about IGX which we did and got positive. This is the determined cause for all my illnesses by my Lyme Literate Doc. and just to make it clear, you DO NEED a lyme literate MD or LLMD to fight this illness correctly! It is a long hard treatment and encountering road blocks is just something that happens with this. I am sure all your other illnesses were Lyme too. I am surprised you were told otherwise, but I can understand if you don't have accurate testing sooner, or a LYme Friendly doc.... so hopefully you make yourself home at this site with knowing we can help you out and keep researching Chronic Lyme disease to help your own self. check out my blog: www.elainaslymediseasestory.blogspot.com to learn some and connect with me for support. it may be beneficial to you to read my story and stuff. Other thasn that good luck with this long road ahead of you, and hopefully you plan to do more than just 3 1/2 weeks doxy, because thats unreliable... BUT you could try a natural approach mentioned in Healing Lyme by S.H. Buhner, a book that speaks of natural med.sm and educates you on the illness. another recomendable book is Lyme Disease Survival Guide by Connie Strasheim, a very personally touching book with very supporting ideas and info on Lyme and its treatment processes. Elaina From: susan abod <singer1710@...> Subject: [ ] another new member... Date: Monday, March 30, 2009, 4:44 PM Hi group My name is . I'm writing this from Santa Fe, NM. I've been disabled since 1987 - when I got my first diagnosis: Epstein Barr Virus- which months later started being called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)- then got an additional diagnosis of Fibromyalgia a year later- and then soon after developed severe Multiple Chemical Sensitivities (MCS) finding high levels of chemicals in fat tissue. After working with these mystery illnesses trying many things-and surrendering to not being able to work-over a 2 1/2 year period -I made a documentary about my experience with these illnesses in '95 (funny you don't look sick) -- I was living on the east coast for 20 years -but after 2 1/2 years unable to find safe affordable non- toxic- non moldy housing- I found housing Santa Fe (through my MCS contacts in the Southwest- working on another documentary- Homesick) I have been here since 2004- I thought I was getting stronger- doing more- more brain power- but started going down in mid August and in Jan got diagnosed having positive anitbodies for Lyme- (via ignenex and 3 doc's opinions) so I'm a newcomer to Lyme-- no one is saying- this was what I had all along- one is saying this looks like a more recent infection- 1 - 1/2 years old????? So I'm on doxeycycline now for 3 1/2 weeks- it's really odd to get my head around " having Lyme " or identifying my symptoms as being from Lyme and not from MCS or CFIDS or Fibro- Anybody have this or a similar experience-- of late diagnosis after other illnesses? I'm pretty pooped with taking just 200 mg of doxy a day- lots of ear ringing- a recently acquired symptom! argh anyway- here I am- hoping to connect with folks-- glad this group is here- best- susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi ! My name is Cortney. I'm 17 years old. I'm sorry to hear you were recently diagnosed with Lyme Disease. I have it too. i'm also sorry that you have had all these other illnesses. personally, i believe these illnesses are part of the lyme because the disease is so commonly misdiagnosed by so many doctors and so many second opinions that people have suffered for years and years with it. it took two years for me to find out that i had lyme disease. it started out in 2006 when i wanted to play basketball, i was fourteen years old. i got a cyst (not mentioning where for privacy) and the symptoms progressed from there. i became severely nauseous and thought that i could possible have the flu, but i knew after about a month that it was more than that. after the nausea came the headaches and fatigue. i went to countless doctor visits in illinois and nobody knew what the heck was wrong with me. they told me it was " all in my head " and i needed to get " professional help " . they pretty much told me i was a psycho and i needed to be controlled. people used to tell me that i didn't look sick either. only my parents and my sister knew what was wrong with me because they saw how i looked after i tried to exercise (exercise made symptoms worse) and they saw the color of my skin whiten as the months went by. then we found out about a doctor in missouri and he ordered a test and the test came back positive for lyme disease. it was my mother who went to all the effort to research lyme disease and my sister and my dad who helped her. the first medication i took was the doxy and i had a reaction on it too and after a few weeks i had to move on to a different antibiotic. i can no longer play my precious basketball (it is my passion) and i have a very difficult time getting to school because, even though i'm being treated for lyme, i've not yet fully recovered and it seems to be a long road. but, i didn't get sick in just a couple weeks, it took two years for us to find out what was wrong and it going to take at least a third of that to get better. i hope that what i've said is what you're looking for. the Lord knows you've suffered much longer than i have. since 1987! geez! i feel for ya. i'm new to this group too, and hope that we can both find what we're looking for. Bye! Cortney ________________________________ From: susan abod <singer1710@...> Sent: Monday, March 30, 2009 3:44:56 PM Subject: [ ] another new member... Hi group My name is . I'm writing this from Santa Fe, NM. I've been disabled since 1987 - when I got my first diagnosis: Epstein Barr Virus- which months later started being called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)- then got an additional diagnosis of Fibromyalgia a year later- and then soon after developed severe Multiple Chemical Sensitivities (MCS) finding high levels of chemicals in fat tissue. After working with these mystery illnesses trying many things-and surrendering to not being able to work-over a 2 1/2 year period -I made a documentary about my experience with these illnesses in '95 (funny you don't look sick) -- I was living on the east coast for 20 years -but after 2 1/2 years unable to find safe affordable non- toxic- non moldy housing- I found housing Santa Fe (through my MCS contacts in the Southwest- working on another documentary- Homesick) I have been here since 2004- I thought I was getting stronger- doing more- more brain power- but started going down in mid August and in Jan got diagnosed having positive anitbodies for Lyme- (via ignenex and 3 doc's opinions) so I'm a newcomer to Lyme-- no one is saying- this was what I had all along- one is saying this looks like a more recent infection- 1 - 1/2 years old????? So I'm on doxeycycline now for 3 1/2 weeks- it's really odd to get my head around " having Lyme " or identifying my symptoms as being from Lyme and not from MCS or CFIDS or Fibro- Anybody have this or a similar experience-- of late diagnosis after other illnesses? I'm pretty pooped with taking just 200 mg of doxy a day- lots of ear ringing- a recently acquired symptom! argh anyway- here I am- hoping to connect with folks-- glad this group is here- best- susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 That is interesting that a doctor would venture to guess that it is a 1 1/2 year infection with your history--too bad we can't hold them accountable for their calls. The first thing I'd read if I were you is Rosner's " Ten Top Lyme Treatments. " I hope I got his name right and the title of the book, if I didn't someone will correct it. It is packed full of basic information that will get you off to a good start. There are also other lyme groups, Canada has one that is very helpful. They list symptoms that I've experienced that I haven't necessarily seen talked about in much detail in the lyme groups I'm reading. Google, google, google and read. ------- Original Message ------- From : susan abod[mailto:singer1710@...] Sent : 3/30/2009 1:44:56 PM To : Cc : Subject : RE: [ ] another new member... Hi group My name is . I'm writing this from Santa Fe, NM. I've been disabled since 1987 - when I got my first diagnosis: Epstein Barr Virus- which months later started being called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)- then got an additional diagnosis of Fibromyalgia a year later- and then soon after developed severe Multiple Chemical Sensitivities (MCS) finding high levels of chemicals in fat tissue. After working with these mystery illnesses trying many things-and surrendering to not being able to work-over a 2 1/2 year period -I made a documentary about my experience with these illnesses in '95 (funny you don't look sick) -- I was living on the east coast for 20 years -but after 2 1/2 years unable to find safe affordable non- toxic- non moldy housing- I found housing Santa Fe (through my MCS contacts in the Southwest- working on another documentary- Homesick) I have been here since 2004- I thought I was getting stronger- doing more- more brain power- but started going down in mid August and in Jan got diagnosed having positive anitbodies for Lyme- (via ignenex and 3 doc's opinions) so I'm a newcomer to Lyme-- no one is saying- this was what I had all along- one is saying this looks like a more recent infection- 1 - 1/2 years old????? So I'm on doxeycycline now for 3 1/2 weeks- it's really odd to get my head around " having Lyme " or identifying my symptoms as being from Lyme and not from MCS or CFIDS or Fibro- Anybody have this or a similar experience--of late diagnosis after other illnesses? I'm pretty pooped with taking just 200 mg of doxy a day- lots of ear ringing- a recently acquired symptom! argh anyway- here I am- hoping to connect with folks-- glad this group is here- best- susan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Hi - I can relate, because my story is very similar. I am very disappointed and angry how all my doctors treated me. I was complaining to my primary care doctor about feeling very tired, drooling, confusion, difficulty concentrating, ringing in my ears, drooling, change in my vision, hip pains, back pains, and pains in both my feet, chest pains, heavy pressure in my chest, swelling in my hips and legs, headaches, and irritability. Now severe knee pains. She would not do any test, all she would do is prescribe pain medication for me. She then sent me to a neurologist who also prescribe pain medication. Then I saw a podiatrist, who prescribed pain medication. Then I saw a orthopedic doctor who also prescribed pain medication. NONE of these doctors consulted each other to find out what medications or test the other had performed. They even sent me to the National Rehabilitation Hospital for special shoes, which did not help me to walk any better. I was even sent to mental health because of all my complaints of pain, they thought it was in my head, not my body. Then I developed the inability to sleep, difficulty remembering, pain in all my joints, difficulty holding a pen to write, difficulty opening bottles and jars, and opening my medication bottles. I bought groceries and left all 5 bags on the counter at the store. Went to the same grocery store for lunch, only to realize that I had left my wallet at home on the table. Went to the grocery store, and left my key in the front door of my apartment building. Went to check my mailbox, I could not find my keys. I thought I left them at the grocery store. I could not think clear enough to realize that I had entered the main building's lobby, and that I needed keys to get into my building. Luckily, the man across the hall from me entered the building, and said to me, " Excuse me, Are these your keys? I was shocked. On February 19, 2009, I went to my primary care doctor and pleaded with her to test me for Lyme disease. She did not want to test me, because she said that Lyme is not found in the city. I told her that I had been doing my own research, and based on my symptoms I put in the search engine, it came back for Lyme disease. So I pleaded and begged her to just test me for Lyme and I would leave her alone. So she agreed to test me. I went to her on 2/25/09, to get a prescription filled and she saw me and said, " I just tried to call you, and your telephone number is not working " . She motioned me to go with her into an empty exam room. This is were she gave me the news that my Lyme test came back POSITIVE. My heart dropped, but I was relief, because now I knew what was wrong with me. I have never felt so out of control. I used to be a very organized person. Due to the extreme fatigue, I have not been able to do any house work. I can't prepare homemade meals like I used to. Everything has been very quick. Sometime just plain bread, dry cereal, crackers, bottle water or juice, dry nuts and fruit. I have been on doxycycline for 3 weeks now. Last week I started feeling very sick on my stomach from the medication. Last week I started eating plain yogurt before twice a day. I saw a new doctor on last Thursday, and he has ordered new labs for me. So I will wait to see what comes back. Will keep you posted. Keep the faith! Gwen > > Hi group > > My name is . I'm writing this from Santa Fe, NM. I've been > disabled since 1987 - when I got my first diagnosis: Epstein Barr > Virus- which months later started being called Chronic Fatigue Immune > Dysfunction Syndrome (CFIDS)- then got an additional diagnosis of > Fibromyalgia a year later- and then soon after developed severe > Multiple Chemical Sensitivities (MCS) finding high levels of chemicals > in fat tissue. After working with these mystery illnesses trying many > things-and surrendering to not being able to work-over a 2 1/2 year > period -I made a documentary about my experience with these illnesses > in '95 (funny you don't look sick) -- I was living on the east coast > for 20 years -but after 2 1/2 years unable to find safe affordable non- > toxic- non moldy housing- I found housing Santa Fe (through my MCS > contacts in the Southwest- working on another documentary- Homesick) I > have been here since 2004- I thought I was getting stronger- doing > more- more brain power- but started going down in mid August and > in Jan got diagnosed having positive anitbodies for Lyme- (via ignenex > and 3 doc's opinions) so I'm a newcomer to Lyme-- no one is saying- > this was what I had all along- one is saying this looks like a more > recent infection- 1 - 1/2 years old????? So I'm on doxeycycline now > for 3 1/2 weeks- it's really odd to get my head around " having Lyme " or > identifying my symptoms as being from Lyme and not from MCS or CFIDS or > Fibro- > Anybody have this or a similar experience--of late diagnosis after > other illnesses? > I'm pretty pooped with taking just 200 mg of doxy a day- lots of ear > ringing- a recently acquired symptom! argh > anyway- here I am- hoping to connect with folks-- > glad this group is here- best- susan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 , All your diagnoses are the classic misdiagnoses diseases listed in Lyme literature. Whether or not you had these other diseases, the symptoms are the same. My old neurologist listed all these diseases on my chart after I filled out the intake paperwork, just translating symptoms into disease names. My neighbor up the street has had fibromyalgia for years, but her dog has been diagnosed with Lyme. Since we live in the same wooded area and I have had proper diagnoses after a while, it always makes me wonder who all really has Lyme. Doctors are soooo Lyme clueless. Best wishes and hope they can cure whatever illnesses you really do have. Doxy is wicked btw., I had IV doxy after IV rocephin did not work twice. Besides herbs I am now on intramuscular bicicillin (a lot less of a pain then doxy). Feel better. Dagmar Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Hi , When you watch the movie, Under Our Skin, which is about to be released in theaters this summer, you'll see how common your story is. There might be a community screening of this film in Santa Fe or nearby, so watch for that, too. So many people have been diagnosed (misdiagnosed) with the same illnesses as you when it was really Lyme all along. Keep the faith. Educate yourself and make sure you get the proper treatment. Many uninformed doctors think a three-week course of Doxycycline is all you need but in your case, a longer course of antibiotics is most likely called for. Look for a Lyme-literate MD (LLMD) in your area to get the best treatment. Very best, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Hi Gwen My name is Cortney and i'm a 17 year old girl. i was diagnosed with lyme disease last fall and also had a struggle with my doctors about them testing me for lyme. mom and dad tested my doctors patients just to get me tested. my parents had seen me suffer for two years and were desperate to try anything just so i would feel better. well, the doctors tested my for lyme, but the test was negative. mom, dad, and i still couldn't shake the feeling that we all had about me having lyme. all the signs were there. so we made a few phone calls and a doctor in Missouri was willing to have me come in for an appointment. we didn't have to sit in his office for more than half an hour before he had already assesed that i had lyme. all he had to do was look at me. he pretty much said he didn't even need the western blot test, but he tested me anyway and, what do ya know, i had lyme. just because " lyme isn't present in the city " doesn't mean that you didn't walk into the woods somewhere and pick it up from a bite that you may not have even notice. i barely noticed my bite, i thought it was a spider bite. if the doxy is making your stomach turn its could be because of acid reflex, which you could take antacids if you're not already on them to prevent this, and then it could be because of an intestinal yeast infection. if you do have the intestinal yeast infection, you're doing the right thing by eating yogurt. you might also try some probiotic tablets, they seem to help me, and stay off the sugar! no fruit or chocolate or icecream or even cakes etc.! i know it might be hard for you to say off the fruit because you're so dog gone tired and sore, but at least cut back on the junky sugar to help. sugar only makes the yeast stronger. but you may not have an intestinal yeast infection. Lord knows, i'm no doctor. i've got a friend, Elaina, who has some really bad problems with the oral antibiotics. i wish there was someway that they could do the IV antibodies for her because they bypass the stomach and would help with her ulcers. i think IV antibodies might even help you if you're having acid reflex, but you're doctor may have other options for you. another bad side of the antibodies is the herxes. but if we want to be better and get our life-styles back, everything always gets worse before it gets better. that's why i think positive and keep going. don't worry, we're both going to get through this and trust God to give us our health back. He will always provide and in turn we must always pray, worship, and keep our faith and love for him. just keep up with the antibodies! Cortney ________________________________ From: gwendolyny1 <gwendolyny1@...> Sent: Monday, March 30, 2009 11:18:08 PM Subject: [ ] Re: another new member... Hi - I can relate, because my story is very similar. I am very disappointed and angry how all my doctors treated me. I was complaining to my primary care doctor about feeling very tired, drooling, confusion, difficulty concentrating, ringing in my ears, drooling, change in my vision, hip pains, back pains, and pains in both my feet, chest pains, heavy pressure in my chest, swelling in my hips and legs, headaches, and irritability. Now severe knee pains. She would not do any test, all she would do is prescribe pain medication for me. She then sent me to a neurologist who also prescribe pain medication. Then I saw a podiatrist, who prescribed pain medication. Then I saw a orthopedic doctor who also prescribed pain medication. NONE of these doctors consulted each other to find out what medications or test the other had performed. They even sent me to the National Rehabilitation Hospital for special shoes, which did not help me to walk any better. I was even sent to mental health because of all my complaints of pain, they thought it was in my head, not my body. Then I developed the inability to sleep, difficulty remembering, pain in all my joints, difficulty holding a pen to write, difficulty opening bottles and jars, and opening my medication bottles. I bought groceries and left all 5 bags on the counter at the store. Went to the same grocery store for lunch, only to realize that I had left my wallet at home on the table. Went to the grocery store, and left my key in the front door of my apartment building. Went to check my mailbox, I could not find my keys. I thought I left them at the grocery store. I could not think clear enough to realize that I had entered the main building's lobby, and that I needed keys to get into my building. Luckily, the man across the hall from me entered the building, and said to me, " Excuse me, Are these your keys? I was shocked. On February 19, 2009, I went to my primary care doctor and pleaded with her to test me for Lyme disease. She did not want to test me, because she said that Lyme is not found in the city. I told her that I had been doing my own research, and based on my symptoms I put in the search engine, it came back for Lyme disease. So I pleaded and begged her to just test me for Lyme and I would leave her alone. So she agreed to test me. I went to her on 2/25/09, to get a prescription filled and she saw me and said, " I just tried to call you, and your telephone number is not working " . She motioned me to go with her into an empty exam room. This is were she gave me the news that my Lyme test came back POSITIVE. My heart dropped, but I was relief, because now I knew what was wrong with me. I have never felt so out of control. I used to be a very organized person. Due to the extreme fatigue, I have not been able to do any house work. I can't prepare homemade meals like I used to. Everything has been very quick. Sometime just plain bread, dry cereal, crackers, bottle water or juice, dry nuts and fruit. I have been on doxycycline for 3 weeks now. Last week I started feeling very sick on my stomach from the medication. Last week I started eating plain yogurt before twice a day. I saw a new doctor on last Thursday, and he has ordered new labs for me. So I will wait to see what comes back. Will keep you posted. Keep the faith! Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Rosner.... Top Ten Lyme Disease Treatments...... Yup, my mom is reading that and found it very helpful! Go for it!! (and, IGX is AWESOME a god sent gift to Lyme Disease Sufferers!) Elaina From: oakridge@... <oakridge@...> Subject: RE: [ ] another new member... Date: Monday, March 30, 2009, 8:37 PM That is interesting that a doctor would venture to guess that it is a 1 1/2 year infection with your history--too bad we can't hold them accountable for their calls. The first thing I'd read if I were you is Rosner's " Ten Top Lyme Treatments. " I hope I got his name right and the title of the book, if I didn't someone will correct it. It is packed full of basic information that will get you off to a good start. There are also other lyme groups, Canada has one that is very helpful. They list symptoms that I've experienced that I haven't necessarily seen talked about in much detail in the lyme groups I'm reading. Google, google, google and read. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Hi Cortney- Thank you so much for responding to my email message. This Lyme has really stolen my life. In November 08 the fatigue hit me like a ton of bricks. I was in bed for over 6 weeks before going anywhere outside my apartment. The only thing I could do is go to the bathroom, grab several bottles of water, crackers, bread, and gum to keep by my bedside for when I woke up hungry, so I could have something to eat. It became very difficult for me to stand up and to walk. My balance was off. If you saw me walking, you would think I was drunk! In December 08, I suffered from severe leg pains. I have NEVER had pains so bad in my legs before. I was so scared. On 2/14/09, I managed to get to the emergency room. When the nurse sat down with me and asked me what was going on with me, I told her just about all of the symptoms I had been experiencing in the last 6 months. My new problem that day was swelling in both of my legs, from my hips to my feet. I had chest pains, and pains, back pains, difficulties concentrating, headaches, brain fogs and severe eye irritation (dry eyes). I felt a mess. They did an EKG and sent me home with a diagnose of Fibermylagia. Now I have been experiencing change of colors when looking at the computer screen. It's a light film of blue, pink and sometime green fills the screen. My eyelashes has come out and so has the hair on my head. It always feel like some is crawling on me, (face, arms, legs, and ears). My lips had broke out with little bumps and were swollen, and I had dark circles under my eyes. I looked like a CRACKHEAD! I Never had these problem before. I am going to see my primary care doctor in the morning to ask her to extend my antibiotic medication for at least 2 more weeks, which is when I go back to see my new doctor. I am going to ask her for a referral to get B-12 shot for energy. I am going to also start on Probotics supplements and a colon cleanser, along with eating yogurt daily (3 times a day). So I will continue to keep the board updated with my treatment and progress. I will keep everyone I my prayers. Take care of yourself. Gwen From: Cortney <wright_cortney@...> Subject: Re: [ ] another new member... Date: Tuesday, March 31, 2009, 2:37 PM Hi Gwen My name is Cortney and i'm a 17 year old girl. i was diagnosed with lyme disease last fall and also had a struggle with my doctors about them testing me for lyme. mom and dad tested my doctors patients just to get me tested. my parents had seen me suffer for two years and were desperate to try anything just so i would feel better. well, the doctors tested my for lyme, but the test was negative. mom, dad, and i still couldn't shake the feeling that we all had about me having lyme. all the signs were there. so we made a few phone calls and a doctor in Missouri was willing to have me come in for an appointment. we didn't have to sit in his office for more than half an hour before he had already assesed that i had lyme. all he had to do was look at me. he pretty much said he didn't even need the western blot test, but he tested me anyway and, what do ya know, i had lyme. just because " lyme isn't present in the city " doesn't mean that you didn't walk into the woods somewhere and pick it up from a bite that you may not have even notice. i barely noticed my bite, i thought it was a spider bite. if the doxy is making your stomach turn its could be because of acid reflex, which you could take antacids if you're not already on them to prevent this, and then it could be because of an intestinal yeast infection. if you do have the intestinal yeast infection, you're doing the right thing by eating yogurt. you might also try some probiotic tablets, they seem to help me, and stay off the sugar! no fruit or chocolate or icecream or even cakes etc.! i know it might be hard for you to say off the fruit because you're so dog gone tired and sore, but at least cut back on the junky sugar to help. sugar only makes the yeast stronger. but you may not have an intestinal yeast infection. Lord knows, i'm no doctor. i've got a friend, Elaina, who has some really bad problems with the oral antibiotics. i wish there was someway that they could do the IV antibodies for her because they bypass the stomach and would help with her ulcers. i think IV antibodies might even help you if you're having acid reflex, but you're doctor may have other options for you. another bad side of the antibodies is the herxes. but if we want to be better and get our life-styles back, everything always gets worse before it gets better. that's why i think positive and keep going. don't worry, we're both going to get through this and trust God to give us our health back. He will always provide and in turn we must always pray, worship, and keep our faith and love for him. just keep up with the antibodies! Cortney ____________ _________ _________ __ From: gwendolyny1 <gwendolyny1> @group s.com Sent: Monday, March 30, 2009 11:18:08 PM Subject: [ ] Re: another new member... Hi - I can relate, because my story is very similar. I am very disappointed and angry how all my doctors treated me. I was complaining to my primary care doctor about feeling very tired, drooling, confusion, difficulty concentrating, ringing in my ears, drooling, change in my vision, hip pains, back pains, and pains in both my feet, chest pains, heavy pressure in my chest, swelling in my hips and legs, headaches, and irritability. Now severe knee pains. She would not do any test, all she would do is prescribe pain medication for me. She then sent me to a neurologist who also prescribe pain medication. Then I saw a podiatrist, who prescribed pain medication. Then I saw a orthopedic doctor who also prescribed pain medication. NONE of these doctors consulted each other to find out what medications or test the other had performed. They even sent me to the National Rehabilitation Hospital for special shoes, which did not help me to walk any better. I was even sent to mental health because of all my complaints of pain, they thought it was in my head, not my body. Then I developed the inability to sleep, difficulty remembering, pain in all my joints, difficulty holding a pen to write, difficulty opening bottles and jars, and opening my medication bottles. I bought groceries and left all 5 bags on the counter at the store. Went to the same grocery store for lunch, only to realize that I had left my wallet at home on the table. Went to the grocery store, and left my key in the front door of my apartment building. Went to check my mailbox, I could not find my keys. I thought I left them at the grocery store. I could not think clear enough to realize that I had entered the main building's lobby, and that I needed keys to get into my building. Luckily, the man across the hall from me entered the building, and said to me, " Excuse me, Are these your keys? I was shocked. On February 19, 2009, I went to my primary care doctor and pleaded with her to test me for Lyme disease. She did not want to test me, because she said that Lyme is not found in the city. I told her that I had been doing my own research, and based on my symptoms I put in the search engine, it came back for Lyme disease. So I pleaded and begged her to just test me for Lyme and I would leave her alone. So she agreed to test me. I went to her on 2/25/09, to get a prescription filled and she saw me and said, " I just tried to call you, and your telephone number is not working " . She motioned me to go with her into an empty exam room. This is were she gave me the news that my Lyme test came back POSITIVE. My heart dropped, but I was relief, because now I knew what was wrong with me. I have never felt so out of control. I used to be a very organized person. Due to the extreme fatigue, I have not been able to do any house work. I can't prepare homemade meals like I used to. Everything has been very quick. Sometime just plain bread, dry cereal, crackers, bottle water or juice, dry nuts and fruit. I have been on doxycycline for 3 weeks now. Last week I started feeling very sick on my stomach from the medication. Last week I started eating plain yogurt before twice a day. I saw a new doctor on last Thursday, and he has ordered new labs for me. So I will wait to see what comes back. Will keep you posted. Keep the faith! Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Hi Gwen, First of all, you take care of yourself. these are some pretty strong symptoms of lyme. i can't believe all the pain ur in. you sound like you must be from the walking dead. no life style, sleeping all the time, dark spots under your eyes. i feel for you girl. i hope the doxy, that's the one your on right?, is making you feel even the slightest difference. i'll pray for you as well tonight. once again, take care. Cortney ________________________________ From: Gwendolyn Young <gwendolyny1@...> Sent: Wednesday, April 1, 2009 11:49:30 PM Subject: Re: [ ] another new member... Hi Cortney- Thank you so much for responding to my email message. This Lyme has really stolen my life. In November 08 the fatigue hit me like a ton of bricks. I was in bed for over 6 weeks before going anywhere outside my apartment. The only thing I could do is go to the bathroom, grab several bottles of water, crackers, bread, and gum to keep by my bedside for when I woke up hungry, so I could have something to eat. It became very difficult for me to stand up and to walk. My balance was off. If you saw me walking, you would think I was drunk! In December 08, I suffered from severe leg pains. I have NEVER had pains so bad in my legs before. I was so scared. On 2/14/09, I managed to get to the emergency room. When the nurse sat down with me and asked me what was going on with me, I told her just about all of the symptoms I had been experiencing in the last 6 months. My new problem that day was swelling in both of my legs, from my hips to my feet. I had chest pains, and pains, back pains, difficulties concentrating, headaches, brain fogs and severe eye irritation (dry eyes). I felt a mess. They did an EKG and sent me home with a diagnose of Fibermylagia. Now I have been experiencing change of colors when looking at the computer screen. It's a light film of blue, pink and sometime green fills the screen. My eyelashes has come out and so has the hair on my head. It always feel like some is crawling on me, (face, arms, legs, and ears). My lips had broke out with little bumps and were swollen, and I had dark circles under my eyes. I looked like a CRACKHEAD! I Never had these problem before. I am going to see my primary care doctor in the morning to ask her to extend my antibiotic medication for at least 2 more weeks, which is when I go back to see my new doctor. I am going to ask her for a referral to get B-12 shot for energy. I am going to also start on Probotics supplements and a colon cleanser, along with eating yogurt daily (3 times a day). So I will continue to keep the board updated with my treatment and progress. I will keep everyone I my prayers. Take care of yourself. Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2009 Report Share Posted April 9, 2009 Gwen you said " Now I have been experiencing change of colors when looking at the computer screen. It's a light film of blue, pink and sometime green fills the screen. " I get that too when surfing the web with my laptop sometimes when there's a lot of white space on a web page- I see blue or green. When I first became ill, I used to occasionally see translucent yellow patches in the sky on clear days. Lyme can play havoc with your eyes- I've also had bouts of nasty eye pain problems over the years. > > From: Cortney wright_cortney@... > Subject: Re: [ ] another new member... > > Date: Tuesday, March 31, 2009, 2:37 PM > > > > > > > > > > > > > Hi Gwen > > My name is Cortney and i'm a 17 year old girl. i was diagnosed with lyme disease last fall and also had a struggle with my doctors about them testing me for lyme. mom and dad tested my doctors patients just to get me tested. my parents had seen me suffer for two years and were desperate to try anything just so i would feel better. well, the doctors tested my for lyme, but the test was negative. mom, dad, and i still couldn't shake the feeling that we all had about me having lyme. all the signs were there. so we made a few phone calls and a doctor in Missouri was willing to have me come in for an appointment. we didn't have to sit in his office for more than half an hour before he had already assesed that i had lyme. all he had to do was look at me. he pretty much said he didn't even need the western blot test, but he tested me anyway and, what do ya know, i had lyme. > > > > just because " lyme isn't present in the city " doesn't mean that you didn't walk into the woods somewhere and pick it up from a bite that you may not have even notice. i barely noticed my bite, i thought it was a spider bite. if the doxy is making your stomach turn its could be because of acid reflex, which you could take antacids if you're not already on them to prevent this, and then it could be because of an intestinal yeast infection. if you do have the intestinal yeast infection, you're doing the right thing by eating yogurt. you might also try some probiotic tablets, they seem to help me, and stay off the sugar! no fruit or chocolate or icecream or even cakes etc.! i know it might be hard for you to say off the fruit because you're so dog gone tired and sore, but at least cut back on the junky sugar to help. sugar only makes the yeast stronger. but you may not have an intestinal yeast infection. Lord knows, i'm no doctor. > > > > i've got a friend, Elaina, who has some really bad problems with the oral antibiotics. i wish there was someway that they could do the IV antibodies for her because they bypass the stomach and would help with her ulcers. i think IV antibodies might even help you if you're having acid reflex, but you're doctor may have other options for you. > > > > another bad side of the antibodies is the herxes. but if we want to be better and get our life-styles back, everything always gets worse before it gets better. that's why i think positive and keep going. don't worry, we're both going to get through this and trust God to give us our health back. He will always provide and in turn we must always pray, worship, and keep our faith and love for him. just keep up with the antibodies! > > > > Cortney > > > > ____________ _________ _________ __ > > From: gwendolyny1 <gwendolyny1> > > @group s.com > > Sent: Monday, March 30, 2009 11:18:08 PM > > Subject: [ ] Re: another new member... > > > > Hi - > > > > I can relate, because my story is very similar. I am very disappointed and angry how all my doctors treated me. > > > > I was complaining to my primary care doctor about feeling very tired, drooling, confusion, difficulty concentrating, ringing in my ears, drooling, change in my vision, hip pains, back pains, and pains in both my feet, chest pains, heavy pressure in my chest, swelling in my hips and legs, headaches, and irritability. Now severe knee pains. > > > > She would not do any test, all she would do is prescribe pain medication for me. She then sent me to a neurologist who also prescribe pain medication. Then I saw a podiatrist, who prescribed pain medication. Then I saw a orthopedic doctor who also prescribed pain medication. NONE of these doctors consulted each other to find out what medications or test the other had performed. They even sent me to the National Rehabilitation Hospital for special shoes, which did not help me to walk any better. > > > > I was even sent to mental health because of all my complaints of pain, they thought it was in my head, not my body. Then I developed the inability to sleep, difficulty remembering, pain in all my joints, difficulty holding a pen to write, difficulty opening bottles and jars, and opening my medication bottles. > > > > I bought groceries and left all 5 bags on the counter at the store. Went to the same grocery store for lunch, only to realize that I had left my wallet at home on the table. Went to the grocery store, and left my key in the front door of my apartment building. Went to check my mailbox, I could not find my keys. I thought I left them at the grocery store. I could not think clear enough to realize that I had entered the main building's lobby, and that I needed keys to get into my building. Luckily, the man across the hall from me entered the building, and said to me, " Excuse me, Are these your keys? I was shocked. > > > > On February 19, 2009, I went to my primary care doctor and pleaded with her to test me for Lyme disease. She did not want to test me, because she said that Lyme is not found in the city. I told her that I had been doing my own research, and based on my symptoms I put in the search engine, it came back for Lyme disease. So I pleaded and begged her to just test me for Lyme and I would leave her alone. So she agreed to test me. > > > > I went to her on 2/25/09, to get a prescription filled and she saw me and said, " I just tried to call you, and your telephone number is not working " . She motioned me to go with her into an empty exam room. This is were she gave me the news that my Lyme test came back POSITIVE. My heart dropped, but I was relief, because now I knew what was wrong with me. > > > > I have never felt so out of control. I used to be a very organized person. Due to the extreme fatigue, I have not been able to do any house work. I can't prepare homemade meals like I used to. Everything has been very quick. Sometime just plain bread, dry cereal, crackers, bottle water or juice, dry nuts and fruit. > > > > I have been on doxycycline for 3 weeks now. Last week I started feeling very sick on my stomach from the medication. > > > > Last week I started eating plain yogurt before twice a day. I saw a new doctor on last Thursday, and he has ordered new labs for me. So I will wait to see what comes back. Will keep you posted. > > > > Keep the faith! > > > > Gwen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2011 Report Share Posted March 11, 2011 Hello all, I've learned alot reading your posts and thought it was time to say hello. I was diagnosed with breast cancer in January and, although pressured into immediate surgery and having my course of treatment announced by an eager 20-something radiologist who claimed to be an expert with over 8 yrs experience, my husband and I said " no thank you " and began Bill 's protocol, with a couple small additions. It's been an incredible journey of learning. I look forward to more learning with all of you. Joy Quote Link to comment Share on other sites More sharing options...
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