Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Hi Sheila, Congrats on getting your doc to give you abx! I was started on 100mg. 2x day of Doxy by a Non-LLMD for a total of 3 weeks and really herxed. When I was fortunate enough to have found my LLMD and saw him for the 1st time, he said that Doxy is good for EARLY Lyme and Ehrlichiosis. He switched me to 500mg 2x a day of Biaxin. Since then, I have been on a number of oral abx combos (Ins.Co. won't pay for IV abx), and have found Ceftin and Flagyl may be putting a dent in this damned disease... Good Luck, Joan LI NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Hello, I just went through 4 months of doxy. At the start I had severs reactions, seizures, pain, shaking, etc. I started the whole 300 mg in one day. Dr. B says doxy is only effective in high enough doses, 300-600 mg a day. So while you have a start, I would not look at it like a cure for long term lyme. I wish that I had slowly did a ramp up instead of all in one day. I also got the worst cough while on doxy. I would think that if you have been infected that long, your CNS must be infected. 100 mg of Doxy will not help that. Be careful about the spinal tap. Make sure your doc is not doing it to just cover himself. Spinal Taps to detect Lyme are not to useful. good luck! jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Dear Sheila: It is my understanding that a Lyme patient tries to take 600-800 mg. of Doxycyline daily. Have you looked at the protocols? It will help to have one in-hand when you assist your doctor off the floor, smelling salts may be warranted, too. Take what you can tolerate to blast the organism. Sincerely, Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Dear Jim: You make a terrific point towards the end of your response. With a Spinal Tap, there is only a 17% chance of finding Lyme. I hope that should the result be negative, that this information will not be used as a way to justify a non-Lyme diagnosis, termination of Antibiotics (i.e., oral or IV) or a referral to a Psychiatrist. Personally, I would do a Spinal Tap but only allow it to be tested for non-Lyme testing, especially if you already have some positive objective results. Remember, the spinal fluid and other bodily fluids belong to you, you get to make the final disposition. Don't let anyone intimidate you. False-negatives/false-positives will be used against you, coming or going. Be aware! Sincerely, Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Hello Annie Thanks for the good advice. Yes, this is what I am really concerned about. I don't think my new doctor has any idea of the medication levels that I am going to need. But I am on really shakey ground in that my tests do not back up a lyme diagnosis. I KNOW from listening to the lyme-aid group and from my history that I do have lyme, but keeping the doctor interested and on track is going to be difficult without those test results. I am hoping I can persuade him over time, if I have improvements in symptoms, to up the dose to around 600 - 800 a day and then if symptoms linger, as they probably will, ask for IV claforan or other drug to blast the disease out. I really appreciate the comments I have had from all in the group. You are my lifeline as my days are really bleak at the moment. I cannot take the NSAIDs any more because of the gastric pain, and the pain in my left knee which is quite swollen is now terrible. I can't get out much because of the fatigue and stiffness in my muscles and money is so tight now that I cannot work. My new GP has been a good support. She has sent a speech therapist to my home to discuss why I have the swallowing problems and how to avoid choking, and has also arranged for aids around the house so that I can do a little housework and gardening. She believes everything I say about this illness and offers suggestions for how she can help. It is the first time ever a doctor has behaved like this towards me. It is great. Thanks for all your help. sheila >Dear Sheila: > >It is my understanding that a Lyme patient tries to take 600-800 mg. of >Doxycyline daily. Have you looked at the protocols? It will help to have >one in-hand when you assist your doctor off the floor, smelling salts may be >warranted, too. Take what you can tolerate to blast the organism. > >Sincerely, >Annie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Hello Annie Thanks for the good advice. Yes, this is what I am really concerned about. I don't think my new doctor has any idea of the medication levels that I am going to need. But I am on really shakey ground in that my tests do not back up a lyme diagnosis. I KNOW from listening to the lyme-aid group and from my history that I do have lyme, but keeping the doctor interested and on track is going to be difficult without those test results. I am hoping I can persuade him over time, if I have improvements in symptoms, to up the dose to around 600 - 800 a day and then if symptoms linger, as they probably will, ask for IV claforan or other drug to blast the disease out. I really appreciate the comments I have had from all in the group. You are my lifeline as my days are really bleak at the moment. I cannot take the NSAIDs any more because of the gastric pain, and the pain in my left knee which is quite swollen is now terrible. I can't get out much because of the fatigue and stiffness in my muscles and money is so tight now that I cannot work. My new GP has been a good support. She has sent a speech therapist to my home to discuss why I have the swallowing problems and how to avoid choking, and has also arranged for aids around the house so that I can do a little housework and gardening. She believes everything I say about this illness and offers suggestions for how she can help. It is the first time ever a doctor has behaved like this towards me. It is great. Thanks for all your help. sheila >Dear Sheila: > >It is my understanding that a Lyme patient tries to take 600-800 mg. of >Doxycyline daily. Have you looked at the protocols? It will help to have >one in-hand when you assist your doctor off the floor, smelling salts may be >warranted, too. Take what you can tolerate to blast the organism. > >Sincerely, >Annie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2000 Report Share Posted May 16, 2000 Scot When I read your message I just wanted to reach out across the world and hug you and say it will be alright. Remember, crying is good, it gets it all out of your system and lets you start over when things are rough. Having said that - smashing a few plates will make you feel pretty good as well. We get used to being ill and not complaining in case we upset those closest to us, and also because we know that things can always get worse, and then we'll really need to complain! For me, it is music, I can bash away at the piano (when no one else is around, because I play very badly!) and totally destroy the Moonlight Sonata, and then tackle whatever job it was that I thought was too much for me. I grow plants too. My poor husband is at his wits end to find places to put them all, the garden is bulging with them, but I just can't stop. It is a kind of therapy that lifts me when I hit rock bottom. I have a good cry, desecrate a perfectly good piece of Beethoven and then prop myself up in the greenhouse and plant seeds. We all need some outlet. Please don't neglect that aspect of yourself. I hope you can find some way to work out your distress, and do remember that we are all thinking about you and wishing you well. sheila Re: [Lyme-aid] New List Owner >Thanks for your support. I guess i just had a nervous breakdown. I cried for >over an hour and a half. > > >------------------------------------------------------------------------ >Best friends, most artistic, class clown Find 'em here: >1/4054/8/_/484634/_/958506710/ >------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is today. > >Easy Reference: >Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > >Please send messages not related to Lyme disease to -Offtopicegroups > >Archives can be accessed at lyme-aid > >Please visit the chat room at chat/lyme-aid > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 Scot When I read your message I just wanted to reach out across the world and hug you and say it will be alright. Remember, crying is good, it gets it all out of your system and lets you start over when things are rough. Having said that - smashing a few plates will make you feel pretty good as well. We get used to being ill and not complaining in case we upset those closest to us, and also because we know that things can always get worse, and then we'll really need to complain! For me, it is music, I can bash away at the piano (when no one else is around, because I play very badly!) and totally destroy the Moonlight Sonata, and then tackle whatever job it was that I thought was too much for me. I grow plants too. My poor husband is at his wits end to find places to put them all, the garden is bulging with them, but I just can't stop. It is a kind of therapy that lifts me when I hit rock bottom. I have a good cry, desecrate a perfectly good piece of Beethoven and then prop myself up in the greenhouse and plant seeds. We all need some outlet. Please don't neglect that aspect of yourself. I hope you can find some way to work out your distress, and do remember that we are all thinking about you and wishing you well. sheila Re: [ ] New List Owner >Thanks for your support. I guess i just had a nervous breakdown. I cried for >over an hour and a half. > > >------------------------------------------------------------------------ >Best friends, most artistic, class clown Find 'em here: >1/4054/8/_/484634/_/958506710/ >------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is today. > >Easy Reference: >Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > >Please send messages not related to Lyme disease to -Offtopicegroups > >Archives can be accessed at lyme-aid > >Please visit the chat room at chat/lyme-aid > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 In reply to Annie, Yes, I was very wary of the doc doing a spinal tap as a way of excluding lyme, but the way he described it, it sounds as if he is just wanting to exclude other demyelinating disorders, and I know he is concerned at a slight chance of MS. After all these years of crap doctors, their derogatory comments, and no medical help whatsoever, it is good to know that this doctor at least, is straight with me and trying to do what he can to help. sheila >Dear Jim: > >You make a terrific point towards the end of your response. With a Spinal >Tap, there is only a 17% chance of finding Lyme. I hope that should the >result be negative, that this information will not be used as a way to >justify a non-Lyme diagnosis, termination of Antibiotics (i.e., oral or IV) >or a referral to a Psychiatrist. Personally, I would do a Spinal Tap but >only allow it to be tested for non-Lyme testing, especially if you already >have some positive objective results. Remember, the spinal fluid and other >bodily fluids belong to you, you get to make the final disposition. Don't >let anyone intimidate you. False-negatives/false-positives will be used >against you, coming or going. Be aware! > >Sincerely, >Annie > >------------------------------------------------------------------------ >72% off on Name brand Watches! >Come and buy today and get free shipping! >1/4011/8/_/484634/_/958454885/ >------------------------------------------------------------------------ > >Send to -Offtopiconelist messages unrelated to Lyme, please. >Archives can be found at: >/group/lyme-aid. >They are filed by month, pick a month and search those archives for subjects you are interested. >Lyme chat, go to this URL: >/chat/lyme-aid >Should you have trouble opening the page, go back to / and make sure you are registered with a password. You can ask ONELIST to remember you, and will only have to do this one time. >To unsubscribe, send email to -unsubscribeonelist >You may substitute " subscribe " , or " digest " or " normal " for >the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 Hello Everyone I have been on doxycycline for only a week and only at 100 mg a day, but it seems to be aggravating the gastritis I developed after using NSAIDS for several years. (I don't take them any more) I am taking an antacid tablet at night and the doxy in the morning to try to avoid discomfort, but its pretty awful. does anyone else have symptoms like this. My husband had pylori 2 years ago and I had the blood test but was negative, so my doctor says I don't need another test. To add to my problems, I have had a neverending headache and sick feeling for several months now. I seem to lurch from one severe discomfort to another. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2000 Report Share Posted May 18, 2000 Hello Everyone I have been on doxycycline for only a week and only at 100 mg a day, but it seems to be aggravating the gastritis I developed after using NSAIDS for several years. (I don't take them any more) I am taking an antacid tablet at night and the doxy in the morning to try to avoid discomfort, but its pretty awful. does anyone else have symptoms like this. My husband had pylori 2 years ago and I had the blood test but was negative, so my doctor says I don't need another test. To add to my problems, I have had a neverending headache and sick feeling for several months now. I seem to lurch from one severe discomfort to another. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 i read an email regarding this. it was suggested to try DGL/deglycernated licorice, chew 3 tablest /3x's per day... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 In a message dated 00-05-18 18:41:13 EDT, you write: << I have been on doxycycline for only a week and only at 100 mg a day, but it seems to be aggravating the gastritis I developed after using NSAIDS for several years. (I don't take them any more) I am taking an antacid tablet at night and the doxy in the morning to try to avoid discomfort, but its pretty awful. does anyone else have symptoms like this. >> Dear Shelia, YES! Daughter had these symptoms for 1-2 yrs before being dxd with lyme & co-infections. What we found to work like MAGIC was the DGL (stands for deglycerinated licorice - it's deglycerinated, so that it does not raise blood pressure - as licorice sometimes does.). If interested any health good store should have it. Slowly chew 3 tablets (licorice taste) - 3 times per day - about 20-30 min before meal. This actually rebuilds mucosal lining in stomach. VERY common to have what you & daughter experience(d) - after anti-inflammatories. It is important to chew very slowly, as the saliva reacts in some way with the DGL (about $12 per bottle, BTW), to set things in motion. This we found after many expensive tests, over 1 yr on Prilosec, anti-acids, etc. She used this treatment about 1 yr ago and has never had this problem again! VBG! Hats off to Dr. Murray! LEarned of this from a free flyer in health food store - written by a Dr. Murray (real genius, this doc - has written about 30 books). If you have trouble finding this flyer, just let me know, can probably find 1 & mail it to you. Blessings, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Dear Chris: VBG = ? Does the flyer give the background/mechanism of how DGL works? Doc Weiss is having a hard time taking his meds (as probably most people on the list doing active treatment). I have yet to start eradicating the Lyme, I hope I'm finishing up with the Babesia treatment and am getting a confirmatory BMB soon. My turn is next! Don't want to bother you with requesting a hardcopy needelessly. Sincerely, Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Dear Annie, There is NO such thing as a " bother " when it comes to info - especially for the lyme family! Will see if health food store open, get flyer & find pertinent parts (if I forget - if you don't have it by tonight, please remind me - fog, you know - LOL!) Blessings, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 i read an email regarding this. it was suggested to try DGL/deglycernated licorice, chew 3 tablest /3x's per day... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Sheila, Do you take the Doxy on an empty stomach? I know its supposed to be more effective like that, but Doxy is notoriously difficult to " stomach " . My doctor told me to take it after eating something. Try something small at first, like yogurt or a glass of milk, and see if that helps. If not, you may have to eat more. Plus, gastro problems are typical with Lyme Disease. I take Prilosec and it really helps! Also, lurching from one severe discomfort to another, is also very typical of Lyme Disease. I also have problems feeling nauseous when I'm on abx's and eat carbohydrates. I could explain why, buts its technical and one of our medical people could explain it better than me, (a lot to do with producing Yeast) but I do know that when I eat too many carbs, while on abx's I feel constantly woozy and nauseous. You may want to cut back on carbs, especially potatoes, rice, pasta, bread, and most fruits, and corn (other green veggies aren't as high in carbs). If you need info on carb amounts in certain foods, let me know. Reading labels helps, but fruit and veggies don't come with labels (at least not here). Hope this helps. Good luck and hang in there. Vicki >Hello Everyone >I have been on doxycycline for only a week and only at 100 mg a day, but it >seems to be aggravating the gastritis I developed after using NSAIDS for >several years. (I don't take them any more) I am taking an antacid tablet >at night and the doxy in the morning to try to avoid discomfort, but its >pretty awful. does anyone else have symptoms like this. ... To add to my problems, I have had a >neverending headache and sick feeling for several months now. I seem to >lurch from one severe discomfort to another. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Dear Annie, There is NO such thing as a " bother " when it comes to info - especially for the lyme family! Will see if health food store open, get flyer & find pertinent parts (if I forget - if you don't have it by tonight, please remind me - fog, you know - LOL!) Blessings, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2000 Report Share Posted May 19, 2000 Sheila, Do you take the Doxy on an empty stomach? I know its supposed to be more effective like that, but Doxy is notoriously difficult to " stomach " . My doctor told me to take it after eating something. Try something small at first, like yogurt or a glass of milk, and see if that helps. If not, you may have to eat more. Plus, gastro problems are typical with Lyme Disease. I take Prilosec and it really helps! Also, lurching from one severe discomfort to another, is also very typical of Lyme Disease. I also have problems feeling nauseous when I'm on abx's and eat carbohydrates. I could explain why, buts its technical and one of our medical people could explain it better than me, (a lot to do with producing Yeast) but I do know that when I eat too many carbs, while on abx's I feel constantly woozy and nauseous. You may want to cut back on carbs, especially potatoes, rice, pasta, bread, and most fruits, and corn (other green veggies aren't as high in carbs). If you need info on carb amounts in certain foods, let me know. Reading labels helps, but fruit and veggies don't come with labels (at least not here). Hope this helps. Good luck and hang in there. Vicki >Hello Everyone >I have been on doxycycline for only a week and only at 100 mg a day, but it >seems to be aggravating the gastritis I developed after using NSAIDS for >several years. (I don't take them any more) I am taking an antacid tablet >at night and the doxy in the morning to try to avoid discomfort, but its >pretty awful. does anyone else have symptoms like this. ... To add to my problems, I have had a >neverending headache and sick feeling for several months now. I seem to >lurch from one severe discomfort to another. Sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Dear Marta I miss hearing your wise and kindly messages on the lyme group. I too get bad carpal tunnel particularly in my left arm. I have a wheat bag which can be heated in the microwave or chilled in the freezer. It is wide enough (about 6 inches) to rest the arm on and long enough (about 16 inches) to wrap around the affected limb and is really soothing. I prefer to heat it as I think this gives maximum relief to the hand. I also have professionally made wrist braces which I use only when the condition is going through a bad spell. The support is underneath the wrist in the form of a padded metal strip and the brace is connected by velcro strips. It allows the wrist to rest completely while the fingers are free to move as usual. I know they are not very glamorous, but they allow the inflammation in the joint to disperse and remove the pressure on the nerve. I hope you find some relief - it is very painful I know. If I wear mine, I can type and do patchwork, although holding a pencil is a little tricky. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Hello Vicki and Everyone Thank you for the words of support. I am finding this disease harder and harder to cope with on a daily basis, particularly being so far away from people who understand and deal with lyme on a daily basis. I can't tell you how wonderful it is to know that there are lovely people like you all to help when things get tough - and tough it is. I'm a social worker by profession and was used to sorting out other peoples' problems, but now I have problems that I can't really sort out - this illness has a mind of its own - it is devious and nasty. We have a big family wedding coming up in a couple of weeks which is in London - 6 hours drive away - and will need to stay in a hotel for 3 nights. What with all preparations to make, then the travel, I'm not sure I can make it, but if I don't go, I'll be letting my little girl down so badly. She never gets to go anywhere because I am always too ill. My husband won't even consider leaving me to take her alone, and I'm not sure I could handle the nights alone, they are the worst time for symptoms. Do I sound like a whinger. Sorry. I used to be a fighter but lost my punch somewhere along the line. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2000 Report Share Posted May 20, 2000 Dear Marta I miss hearing your wise and kindly messages on the lyme group. I too get bad carpal tunnel particularly in my left arm. I have a wheat bag which can be heated in the microwave or chilled in the freezer. It is wide enough (about 6 inches) to rest the arm on and long enough (about 16 inches) to wrap around the affected limb and is really soothing. I prefer to heat it as I think this gives maximum relief to the hand. I also have professionally made wrist braces which I use only when the condition is going through a bad spell. The support is underneath the wrist in the form of a padded metal strip and the brace is connected by velcro strips. It allows the wrist to rest completely while the fingers are free to move as usual. I know they are not very glamorous, but they allow the inflammation in the joint to disperse and remove the pressure on the nerve. I hope you find some relief - it is very painful I know. If I wear mine, I can type and do patchwork, although holding a pencil is a little tricky. sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 Hi Sheila, Thanks for the good advice, I did not think of heat or ice, I have all kinds of contraptions that I can try. Used to use them mostly for my neck. I need to make an appt. with an orthopedic doctor to get good splints for my hands, I am using one from a long time ago that goes right up to the elbow, too bulky but it does keep the wrist still. I must take it off to type though. I hate to call my doctor for another referral for the orthopedic doctor, he sure isn't making any money off of me with the HMO plan that I have, but this is getting too annoying, may as well make it while I have my husband available to take me. I appreciate your kind words, you give me way too much credit, but I will stay involved with the list and type when I can. Hugs, Marta From: Sheila Darbyshire <sheila-e@...> >Dear Marta >I miss hearing your wise and kindly messages on the lyme group. I too get >bad carpal tunnel particularly in my left arm. I have a wheat bag which can >be heated in the microwave or chilled in the freezer. It is wide enough >(about 6 inches) to rest the arm on and long enough (about 16 inches) to >wrap around the affected limb and is really soothing. I prefer to heat it >as I think this gives maximum relief to the hand. I also have >professionally made wrist braces which I use only when the condition is >going through a bad spell. The support is underneath the wrist in the form >of a padded metal strip and the brace is connected by velcro strips. It >allows the wrist to rest completely while the fingers are free to move as >usual. I know they are not very glamorous, but they allow the inflammation >in the joint to disperse and remove the pressure on the nerve. I hope you >find some relief - it is very painful I know. If I wear mine, I can type >and do patchwork, although holding a pencil is a little tricky. >sheila Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 CTS: i forgot to that ice and heat are always good remidies always....i put ice /heat on the hands and wrist with the wrist guard i bought at the drug store.... and these well made ...well design wrist guards are made so you can where them and type and eat and drive...able to use your hands....it's no big deal....it is easy and effective... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Hello Everyone I've been on doxycycline now for about 2 weeks (100mg). Don't seem to have any drastic side effects or Herxs yet. The only problem is the ongoing gastritis, probably exacerbated by the doxy, and generalised fibromyalgia pain which is now severe. I can no longer take non-steroidal anti-inflammatories because of the effect on my gastric system. I follow al the advice about taking with a meal etc. I am taking omazeprole antacid for the stomach pain, but really need something for the other pain as well. My GP says the pain under my shoulder blades and under both sides of my ribs is nothing to do with gallbladder disease or gastritis. She has no idea what may be causing it. I have heard people in the group talk about Neurontin. What is this and can anyone say whether it is useful for muscle, joint and nerve pain. Are there any serious side effects that should make me think twice about using it? sheila Quote Link to comment Share on other sites More sharing options...
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