Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 So he started me on 14 days of an antibiotics and said he'll see me in 6 weeks. Hello back at you! My name is Hall, and I have been diagnosed with lyme too. This group has changed my life. I now accept that I have lyme, instead of trying to deny it. And I am always learning more by staying here, and listenig and asking, and sometimes just lurking around. I have found excellent Lyme literate Doctors, referred to as LLMD. I will be having my first appointment this next week. I have studied vitamins. What I am trying to say is this. I invite you to stay, you don't need my invitation though, for sure. Stay and learn and lurk and feel. OK! That all being said, I copied portions of your letter to respond to. I truly believe we have a very lyme disease knowledgable base here, I'm actually proud of them. I have shared enough info with my husband from this list, (he is a hard boiled scientist, with a Ph degree! ) and HE has come to see the light! 14 days of ABX (antibiotic) is LUNACY for lyme treatment, if you have had it for sometime. I am sorry, but this is the truth. There are people here who could help you find a Dr. in your area, who will treat your lyme, not just provoke a giant. Giving tiny bits of treatment is not good. It does not deal with the germ efeectively. Example. Lyme is a spirokete, as is syphilus. Treatment for that disease is strong and long. I have to go to work! Good luck. You CAN rise above! Hope you find your way soon! A friend, Anyhow..thats about me. Sorry to ramble so... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 I'm also in TX and can help with the names of some good Lyme docs in Houston. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 I live in the Fort Worth area. YT IHi fellow Texan! What part of Texas do you live in? I live in Austin. You need to find a good llmd! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 >> > Dear Texas, Thank god one of the doctors you have seen had the foresight to test you for Lyme, and that you were lucky enough to come up positive if this testing was done through a standard lab, Many standars labs do not provide acurate results. Even though you are being treated by infectious disease specialist, this may not mean he is a lyme literate physican. The more you go the boards and other lyme web sites the more you will learn about this disease. Knowledge is power. There are few doctors in comparision to # of Dotors out there, that know just how dangerous this disease can be if not treated properly and somtimes aggressivly. Find out who heads one the local lyme disease support groups in Texas, they should be able to steer you in the right direction. 2 weeks of antibiotics is not enough amunition to fight this disease. Work fast and read all you can. Good Luck saxi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2003 Report Share Posted August 8, 2003 hi you may or may not have lyme do you have a stiff neck? do you have acute pain in some of yur joints? do you confuse words in ways you did not before? lyme IS a very scary disease to have. if you have an active case than this list will help you get to speed. the good news is there are a lot of treatments that have helped lyme. you can get better over time with knowledge and dedication. if you have lyme and are like most, you will not be teaching this semester you will be spending time working to get this under control. be prepared for this and realize that this is part of the process and most of us have gone thru it. -- best william meyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 How do I find a lymes specialist in my area? [ ] Re: Hello >> There are few doctors in comparision to # of Dotors out there, that know just how dangerous this disease can be if not treated properly and somtimes aggressivly. Find out who heads one the local lyme disease support groups in Texas, they should be able to steer you in the right direction. 2 weeks of antibiotics is not enough amunition to fight this disease. Work fast and read all you can. Good Luck saxi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2003 Report Share Posted August 9, 2003 You could ask here. What is your area? Rita [ ] Re: Hello >> There are few doctors in comparision to # of Dotors out there, that know just how dangerous this disease can be if not treated properly and somtimes aggressivly. Find out who heads one the local lyme disease support groups in Texas, they should be able to steer you in the right direction. 2 weeks of antibiotics is not enough amunition to fight this disease. Work fast and read all you can. Good Luck saxi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Ft. Worth/Arlington (TX) Re: [ ] Re: Hello You could ask here. What is your area? Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 I know there are LLMDs in TX. Does anyone know who they are? Rita Re: [ ] Re: Hello You could ask here. What is your area? Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 Another resource to search for doctors is: http://www.lymenet.com click flash discussion in the upper left hand corner Then choose " seeking a doctor " . Put a post there and someone will help you asap. Carol Kerr -- Re: [ ] Re: Hello I know there are LLMDs in TX. Does anyone know who they are? Rita Re: [ ] Re: Hello You could ask here. What is your area? Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Hi- I live in Texas, too--- I have some names and numbers of LLMD's in Texas--if you email me privately, I will send them to you. (I tried to email you but it didn't go through) You also need to know about another group: txlyme@... It is a Texas group--you might find some neighbors, as well as more info. Good Luck!! Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 Bea- I have also been diagnosed with CFIDS and tested positive for chlamydia pnemonia as well. It wasn't until my gall bladder was removed and biopsied that I tested positive for Lyme Disease. The labs from my gall bladder were received this past week. My surgery was 29 Jul 03. I have not been back to my doc (a rheumatologist) to find out exactly what test was used that showed the Lyme. The lab my doc uses is Medical Diagnostic Labs in Leadenhall, NJ. For the past 6 years that I've suffered with the classic lyme symptoms, I've been tested NUMEROUS times though blood tests and this past Feb went through the 6 week urine Lyme titre thing - all negative. I'm 43 and this has absolutely ruined my life. I'm just learning about the tests and treatments and the fact that since I've had the disease so long, my progonsis is 'iffy' since there's a great possibilitiy permanent damage has already occured. How long has your son had the symptoms? If he fits the Lyme profile, I'd keep searching until you can absolutely rule it out. Good luck to you both Sheryl [ ] hello Hello, I'm new to the lyme list and it is my adult son who is suffering from " chronic Fatigue syndrome " . I have recently been reading on the CFS Experimental list that many CFS patients actually have lyme disease. In view of that information he has recently had tests for lyme through Igenex Lab ordered by our Dr. Markowitz from Michigan. The tests were all negative but he was diagnosed with chlamydia pneumonia and cocciodosmycosis (sp?). He is currently being treated with zithromax and feels pretty awful. After completing this round of antibiotics he will be begin taking an new antifungal medicine (voriconazole). The doctor feels these are opportunistic infections and could be causing the fatigue and other symptoms. He has all the lyme symptoms but the doctor goes by the tests as far as a lyme diagnosis. Are we taking the right steps here. These medicines are not free of side effects and I have some concern about the antifungal especially. The lady who has been sharing information with us on CFS-L is no longer able to post there so if anyone has advice to share it would be most welcome. thank you. Bea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 I'd see a Lyme Literate MD asap. Igenex is a great lab but Lyme tests miss a lot of Lyme. Rita [ ] hello Hello, I'm new to the lyme list and it is my adult son who is suffering from " chronic Fatigue syndrome " . I have recently been reading on the CFS Experimental list that many CFS patients actually have lyme disease. In view of that information he has recently had tests for lyme through Igenex Lab ordered by our Dr. Markowitz from Michigan. The tests were all negative but he was diagnosed with chlamydia pneumonia and cocciodosmycosis (sp?). He is currently being treated with zithromax and feels pretty awful. After completing this round of antibiotics he will be begin taking an new antifungal medicine (voriconazole). The doctor feels these are opportunistic infections and could be causing the fatigue and other symptoms. He has all the lyme symptoms but the doctor goes by the tests as far as a lyme diagnosis. Are we taking the right steps here. These medicines are not free of side effects and I have some concern about the antifungal especially. The lady who has been sharing information with us on CFS-L is no longer able to post there so if anyone has advice to share it would be most welcome. thank you. Bea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 First let me say, so sorry about your son's condition. I know that it has to be tough to go through this with him, even if he is an adult. Secondly let me commend you for your diligence in researching the options. Had my mom had of had the same resources and done the same about 30 years ago, I could have avoided a lot of unnecessary pain and suffering. Of course, we didn't have the Internet then, and that has been the key to my recent diagnosis. You said: He has all the lyme symptoms but the doctor goes by the tests as far as a lyme diagnosis. Are we taking the right steps here. These medicines are not free of side effects and I have some concern about the antifungal especially. You are right to be concerned about this MD. Blood tests do NOT always show the correct picture. Many factors, such as being on abx recently affect the outcome of the WB. Some people with TBD, or tick borne disease, never get a positive Western Blot. Lyme and other TBD's are " clinically " diagnosed because there is no DEFINITIVE test!! In my humble opinion, the situation deserves review by a LLMD. I found my LLMD by registering and posting in the Flash Discussion of http://www.lymenet.org under " Seeking a Doctor " section. There is a great bunch of folks there who are much smarter than me, and they will have great info to share. Post your situation under " Medical Questions " too. Their archives can easily be searched also. It's a great site for additional support. FYI the candida symptoms you mentioned are also common, as lymies get yeast overgrowth from abx treatment. When I finally got diagnosed with Lyme, my lower bowel had fermented yeast in it, and every time I ate I got dizzy and passed out. That's why my nickname on LymeNet is " dizz " !! There's a good possibility that your son has compounded problems also. The good thing is a knowledgeable LLMD will address all. My LLMD, which I'd be happy to share info about off board, treats me for yeast, Lyme and co-infections, diet and medications, specifically suggests supplements and exercise. Must build the whole person to get better... not just ad abx and poof you are well. Hard row to hoe!!!!!! My e-mail address is carolkerr@... Please feel free to drop me a line if you want to talk further. Best wishes to you and your son. Your son is very lucky to have a mama like you. My mama thinks I'm just a hypochondriac and doesn't have much to do with me. You hang in there!! (((BIG HUG))) Carol Kerr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2003 Report Share Posted August 16, 2003 Hi Bea, I imagine that you are referring to Dickenson. I am another who was diagnosed with CFS but also has Lyme and am currently on long term abx right now. I am not as familiar with Lyme as others on this list so I know you will get more information form them. Just wanted to make contact and let you know I have been there. Hugs, Michele -----Original Message----- From: Bea Plizga Sent: Saturday, August 16, 2003 7:22 PM The lady who has been sharing information with us on CFS-L is no longer able to post there so if anyone has advice to share it would be most welcome. thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 Hi Bea, If your son is feeling worse since he began taking the Zith, I would consider this a strong indication that it is Lyme. Most patients usually feel worse when they start antibiotics (abx) because the abx cause herxing - a dieoff of spirochetes that releases toxins into the body. As some have said, if his doctor will not continue with the abx, I would try to find an LLMD - a doctor who knows that tests are not what diagnosis Lyme, but the symptoms the patient has. Best wishes, Patty wrote: > Message: 12 > Date: Sat, 16 Aug 2003 19:22:17 -0400 > From: " Bea Plizga " <dlions@...> > Subject: hello > > Hello, > > I'm new to the lyme list and it is my adult son who is suffering > from " chronic Fatigue syndrome " . <snip> He is currently being > treated with zithromax and feels pretty awful. > Bea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 > Dear Bea, It sounds like your sons pyhsician is on the right track, Lyme is so hard to diagnos properly as their are many infectious disieases that mimick lyme. The fact that your physician knew to test for coinfections and mycorobial infections is a God send. In the practice I belong to, Lyme, Mycroplasmas, and all the co infections of lyme are tested standardly, 9-10 cases where Lyme either comes back equivical or negative that patient will come back positive for something microbial, Zithromax is the drug of choise as well as Tetracycline. As far as the aniifungal, Was your son tested for his candida levels. Doctors Data Lab has a great stool analysis which will help to determine how bad the yeast/candida is. If his levels are low enough, he may be able to use probiotics in conjction with his abx therapy, probiotic are product like Bifido Bacterium/Allergy research, Cultrelle, Vital 10 which have less of an impact as far as a side effects/however sometimes a prescription is necessary if the levels are high and there has been a long history of abx use. Tell your son to hang in there, all of these infectoius diseases are challenging and each individual is different in their responses to ABX therapy, The immune system of each person is unique. Tell your son to be greatful for his diagnosis, many of us go years untols with no help. Tell him to take one day at a time, and to maintain HOPE that his suffering will lessen. God Bless and take care. Saxi I'm new to the lyme list and it is my adult son who is suffering from " chronic Fatigue syndrome " . I have recently been reading on the CFS Experimental list that many CFS patients actually have lyme disease. In view of that information he has recently had tests for lyme through Igenex Lab ordered by our Dr. Markowitz from Michigan. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 I know this is a lyme list, but herx'ing does not mean a person has lyme. You also herx from this antibiotic for mycoplasma and chlamydia pneumonia and probably numerous other infections. Thanks, Doris ----- Original Message ----- From: McDermott If your son is feeling worse since he began taking the Zith, I would consider this a strong indication that it is Lyme. Most patients usually feel worse when they start antibiotics (abx) because the abx cause herxing - a dieoff of spirochetes that releases toxins into the body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2003 Report Share Posted August 17, 2003 Hey -I remember you from way back. So how are things really doing? All your pain is gone or you have gotten used to it? Lydia ACDF-C 5/6 w/graft & hardware-3/2000 Posterior fusion L5/S1 w/graft & hardware- 11/2000 Both successes. Only SI Joint problems & muscle pain now. Oh well. > acupuncture went so fasr had my first microdisectomy mont ago was > living with sciatic pain and vicodens for a m six months neurosurgeon > no fusion nometal > was so out of it for last four years i remeber i sent aaron dailey a > check for 175$ > its all good > the swammeee > aciatic pain gone not much strngth in back yet and pt > i have new understanding of what really causes back injuries > its just the ultimate deteriorstion of the jelly substancecausing > bulges(outside of ubrupt accidents) its the culmination of breaking > your backs for others > i guess im bitter > well pain is gone and off drugs it happens > what happened to old site > was looking at old members still here and those gone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2003 Report Share Posted August 18, 2003 I did say " strong indication " , not absolute proof. Thank you, Doris, for listing other possibilities. Patty > Message: 5 > Date: Sun, 17 Aug 2003 14:41:35 -0700 > From: " Doris Brown " <dorisbrown9@...> > Subject: Re: Re: hello > > I know this is a lyme list, but herx'ing does not mean a > person has lyme. You also herx from this antibiotic for > mycoplasma and chlamydia pneumonia and probably numerous > other infections. > Thanks, > Doris > ----- Original Message ----- > From: McDermott > If your son is feeling worse since he began taking the Zith, I > would consider this a strong indication that it is Lyme. Most > patients usually feel worse when they start antibiotics (abx) > because the abx cause herxing - a dieoff of spirochetes that > releases toxins into the body. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 -hi lydia great to see you!!! i remember you .it's too early to tell..re the pain andliving with it.The neurosurgeon warned me this probably wont be last surgery. .All i know i si had no idea my recovery would take so long .I really like the folks at p.t. , wonderful people.The firast two weeks post surgery were painful andi was just so loaded on oxycodones .It;s different .The previous year just was horrible .And i didnt try to go the full course of acupuncture again. .Maybe if i contued but i doubt it . I was lucky enough to have a well respect neurosurgeon do the procedure.Time will tell .Its nice to see you here Lydia. jim swamee-- In spinaldisorderssupport , lydiajo2 <no_reply@y...> wrote: > Hey -I remember you from way back. > So how are things really doing? > All your pain is gone or you have gotten used to it? > > > Lydia > ACDF-C 5/6 w/graft & hardware-3/2000 > Posterior fusion L5/S1 w/graft & hardware- 11/2000 > Both successes. Only SI Joint problems & muscle pain now. Oh well. > > > > > acupuncture went so fasr had my first microdisectomy mont ago was > > living with sciatic pain and vicodens for a m six months > neurosurgeon > > no fusion nometal > > was so out of it for last four years i remeber i sent aaron dailey > a > > check for 175$ > > its all good > > the swammeee > > aciatic pain gone not much strngth in back yet and pt > > i have new understanding of what really causes back injuries > > its just the ultimate deteriorstion of the jelly substancecausing > > bulges(outside of ubrupt accidents) its the culmination of breaking > > your backs for others > > i guess im bitter > > well pain is gone and off drugs it happens > > what happened to old site > > was looking at old members still here and those gone Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Hi : Thanks for the response. Yes , Cliff has to go in two weeks for a visit. They took him off a blood pressure medicine. And, they will keep checking the blood pressure. He was on two-- as it was too high-- I guess, it was building up in his blood. Just wanted to let you know, That I have a sister,, a good friend , and one of our neighbors is . It is a nice name. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2003 Report Share Posted September 5, 2003 In a message dated 9/5/03 1:03:38 PM Eastern Daylight Time, swtthing12201999@... writes: << what happens if you dont take ANY MEDS?????? >> Unfortunately you will probably flare and get worse. If you want to see what happens, make sure your Dr. is with you the whole way! I have an Aunt with PA who is currently on no meds after years of meds. She has problems, but she seems to be doing pretty well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2003 Report Share Posted September 6, 2003 In a message dated 9/5/2003 1:03:34 PM Eastern Daylight Time, swtthing12201999@... writes: [Editor's Note: Assuming you're talking about PA, quitting all meds is definitely not a good idea: Call/See your doctor, and be as forceful about the issue as you are in your post!! You have every right. D.] My rheumy took me off Enbrel which I have been on since April and also took me off the mtx about two weeks ago. He said I should not stay on such strong meds if they are not working. He put me on Lodine twice a day, an anti-inflammatory and I am better then I have been in months. The pain has gotten so much better. I don't quite understand but I have to go back to him in about a week and a half. He said that maybe I don't have PA and that it is fibromyalgia and osteoarthritis. I don't know what to think. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 --eumy took me off Enbrel which I have been on since April and also took > me off the mtx about two weeks ago. He said I should not stay on such strong > meds if they are not working. He put me on Lodine twice a day, an > anti-inflammatory and I am better then I have been in months. The pain has gotten so much > better. I don't quite understand but I have to go back to him in about a week > and a half. He said that maybe I don't have PA and that it is fibromyalgia > and osteoarthritis. I don't know what to think. > Janet > > Wow Janet, Do you think the Enbrel and MTX made your pain worse or just that you needed the Lodine all along and hadn't had it before? > Whatever the reason I am glad you are feeling better! Marti Quote Link to comment Share on other sites More sharing options...
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