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fluffyluggage
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Ya know, going back up a bit, FWIW, I DO think that Fibromyalgia and CFS are real diseases, but I'm just not sure they always tell the real story. I think in my case, they are just a bit of the picture, and not the whole story. Perhaps they are the result of the Lyme, or just the symptoms of Lyme, IDK really...I haven't gotten to the end of the tale just yet. But I do believe that it's not all in my head, or that it's just a "catch-phrase"... with all due respect. I'm not sure exactly if that's what you meant or how you intended that to be taken, I think perhaps they may be diagnoses that docs turn to when they have no idea where else to go. But I don't think they aren't REAL. JMO...  Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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MoreOrLesMe
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fluffyluggage I’m sorry didn’t try to offend first off I’m not a physician most of my medical knowledge is from trying to figure out why I’m so sick. I’m here to learn from those who have been there. From what I can find Fibromyalgia shares many of the symptoms of Lyme. It is a disorder classified by the presence of chronic widespread pain plus a host of other problems tingling of the skin, Sleep disturbances, brain fog, depression Etc. The cause of is unknown but may be genetically predisposed. Chronic fatigue syndrome symptoms are more or less similar and are poorly understood. I think I was feeling anger with the medical community not trying to say you’re not sick. |
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fluffyluggage
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I understand you weren't trying to offend. I guess I was trying to clarify. I think that it's clear there is more going on! And I understand your frustration, believe me! I get the same way routinely... Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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micheleb
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I JUST JOINED THIS SITE TONITE AND I AM SO COMFORTED BY EVERYONE'S STORIES. I ALSO WAS BIT @5 YRS AGO AND SHOWED MY GP- HE SAID IT WAS NOTHING! AT THE TIME I DID'NT KNOW WHAT A BULLSEYE WAS UNTIL YEARS LATER WHEN I SAW A PICTURE ON THE COMPUTER. ALL ALONG MY DR TOLD ME MY SYMPTOMS WERE ALL DEPRESSION WHILE I KEPT TRYING TO CONVINCE HIM THAT THE PAIN AND FATIGUE WERE THE CAUSE OF MY DEPRESSION NOT THE OTHER WAY AROUND. I FINALLY PUT THE BITE AND SYMPTOMS TOGETHER MYSELF AND ASKED FOR A LYME TEST-IT WAS NEG-SYMPTOMS KEPT GETTING WORSE TO THE POINT I COULD NO LONGER WORK (NOW 34). HE FINALLY DIAGNOSED ME WITH FIBROMYALGIA SO OFF I WENT TO A TOP DR AT YALE WHO RETESTED LYME-NEG AGAIN-TOLD ME SINCE I HAD BULLSEYE I DID HAVE LYME BUT HE BELIEVED THAT B/C TEST WAS NEG THAT MY BODY OVER ALL THIS TIME(YRS)FOUGHT IT OFF ON IT'S OWN. WHAT DID I KNOW! SO HE TOLD ME TO EXERCISE (SINCE THAT WAS HIS CURE FOR FIBRO)AND COME BACK IN 4 MONTHS-I NEVER DID. I LEFT HIS OFFICE SOBBING UNCONTROLLABLY. TO TRY TO SUM THIS UP I STARTED GOING TO FIBRO AND FATIGUE CENTER WHERE THEY HAVE UNCOVERED TONS OF GREAT STUFF-- LOTS OF VIRUSES ,VITAMIN DEFICIENCIES,THYROID,ETC...AND ANOTHER LYME TEST. THIS WAS MY 1ST WEST BLOT THAT ACTUALLY SHOWED 1 REACTIVE BAND(HAD 3 BEFORE)SO I WAS FINALLY A CANDIDATE FOR THE IGENIX TEST AND I FINALLY GOT A POSITIVE LYME. SO HERE I AM AFTER ONLY @5YRS LATER! ALSO HAVE CANDIDA SO ANTIBIOTICS ARE SOMETHING MY BODY'S GONNA HATE. I AM JUST HOPING THEY WORK-PROB IV. I JUST HOPE THIS NEW ID DR KNOWS WHAT SHE'S DOING(CAME HIGHLY RECMND)- BECAUSE CENTER I GO TO NOW DOES'T DO IV ANTIBIOTICS-THEY ARE ALTERNATIVE MED. I HAVE SEVERE DEPRESSION AND THIS IS ALL SO OVERWHELMING. I CAN'T STAND LIVING LIKE I AM AND I AM SO HOPEFUL THAT I CAN GET SOME RELIEF FROM ANTIBIOTICS BUT IT SEEMS LIKE LIKE SUCH A LONG LONG ROAD TO RECOVERY IF THAT AND HOW DO YOU KNOW WHEN AND IF THE LYME IS ACTUALLY GONE? THANKS FOR READING. ANY WORDS OF WISDOM? JUST WANT TO GET BETTER... |
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MoreOrLesMe
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I can only speak from my experience but I have been infected for a long time myself. From what I can tell if they catch it early it’s easy to kill but after several years it becomes well entrenched. I could fill a large trash bag with the empty pill bottles that have used over the past years. Am I better than I was? Yes but there where let’s say a few bumps in the road and I hope I’m not 100 % yet. make sure you talk to your Lyme Dr about Lyme co infections and Probiotics 2 things that have helped me. |
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fluffyluggage
Posts: 1278
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Micheleb, First, I would say be very wary of ID docs. Many of us here on this site are quite bitter where they are concerned. They tend to follow IDSA guidelines, which are quite flawed, as they often don't take into account chronic LD--seeing as how they don't believe in it! The IDSA is a very flawed committee in an of itself--9 of the 14 members have specific interests in LD. Translation= $$$$$$! Be it patents, vaccines, drugs, or whatever, they aren't interested in helping people, unless it's themselves. A couple of great resources for becoming more educated yourself are ILADS and Dr. Joseph Burrascano. The International Lyme and Associated Diseases Society's website is www.ilads.org, and of particular interest is www.ilads.org/basic.html, which has 2 pages of bulleted, succinct very basic info on testing, treatment, etc. Dr. Burrascano is a leading LLMD (Lyme Literate MD), and he's written a guide which can be found, bookmarked, and printed out by googling his name and/or "Advanced Topics in Lyme Disease." It's a 33-page guide, and it's written for docs, but very easy to understand, even for us patients. It's what I like to call my "Lyme Bible." I refer to it constantly. I think it's realy important to educate yourself, so that if you have questions, you don't rely on a doc who isn't going to help you... It sounds like you are on the right road, but you need to stay there, and not let docs who don't have your best interests at heart derail you. Keep chugging away, cuz you'll get better. Many people have gone into remission with LD through alternative therapies, so don't lose hope just because you're not going a conventional route. Learn what you need to know. You're asking the right questions, just keep reading and researching! Don't give up!! If you need someone to talk to, I'm here. Just send me a PM, I'll be glad to help anyway I can. *hugs* Jen P.S. If I may ask, would you please in future, not type in all caps? It does give the impression of shouting, but it also is very difficult on my eyes. It makes it difficult to read your posts, and I'd like very much to be able to help you. I don't mean to be rude at all or to hurt you, but I simply find it hard to read. Thanks! Just because it's impossible doesn't mean it can't happen.
I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.
I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!
The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days. |
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tickgotme
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Their are only a handful of real LLMD's if his doctor doesn't treat it get to a real one. He had one positive test ten years ago, and with the ongoing symptoms they should treat it based on symptoms. My LLMD didn't retest me he took a test from a few years ago and It took me ten years to get to one of the best I am finally on the right meds. My primary didn't know how to treat it or wouldn't because of controversy. The first LLMD I went to moved to California and left me inadiquitly treated, I got new doctor only one in area willing to treat me and he did save my life as my liver was being attacked. But after several years he said my lyme test was negative and would only give me tetracycline for acne. I have had co-infection untreated and undertreated lyme. LLMD I just saw now has me on different better Meds to treat both lyme and co-infection and I can still take Tetracycline for acne which will help lyme. If they are not treating your husbands co-infection I don't believe it is an LLMD. Infectious disease doctor who is not LLMD does not know how to treat Lyme. Did you get doctor from LDA. |
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dharma79
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I am apologizing ahead for this message because it is really just more of a rant and probably not very productive... Why do they tell us to just go get some exercise????? Do they think we are daft? Most of us lead healthy active lifestyles before becoming ill and have NO desire to just sit about...Don't they know that I would LOVE to be ABLE to just get out and get some freaking exercise!!!!!! I understand that exercise increase oxygenation in the blood which is conducive to fighting infection and that under 'normal' conditions, exercise makes people feel better. In fact, I often continue to try walking and stretching for exercise (Not to mention being the primary caregiver to a very active 25lb. toddler 7 days a week) in the hope that I will, at some point, get that result that I miss SO MUCH. IT NEVER WORKS! I am always left the worst for my efforts. Why do doctors not get that we are in very REAL PHYSICAL PAIN! I went for a cardiac stress test yesterday. I literally hobbled in because my hips were so bad and the doctor, who had my 3" of paperwork they made me fill out with the damn IV in my arm, actually said to me "What's wrong with you?" ???????????!!!!!!!! ARE YOU KIDDING ME? I am 34y/o having a stress test done that you are administering and you don't even know why I am here? Needless to say...NONE of the cardiologists in the practice that I went to have even said the word 'Lyme' to me or have addressed any Lyme/cardiac related information. They say all my chest pain, shortness of breath, etc. are simply 'deconditioning'...NO CRAP! How do I fix it if I can't exercise??? And if I can't fix it...what is going to happen to me???? 
I can't stand it sometimes!!! Again...sorry for the rant...I'm sorry to all of you who are also sufferring at the hands of ignorance and negligance and I pray for us all everyday! Thank you all for being here with me! This place has really been a Port in the storm for me! |
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Jenn56
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I AGREE,,I HAVE A TON OF HEART PROBLEMS FR LYME,,,THEY WOULDNT EVEN PUT THE WORD HEART AND LYME TOGETHER,,,IM 31 AND ON HEART PILLS,,2 KEEP THE RATE DOWN,,AND MY LLMD HAS BEEN FIGHTING THE PAST YEAR 4 A PACEMAKER,,,IT REALLY GETS 2 ME AS WELL,,I KEEP ASKING THEM WHAT IF MY HEART STOPS???WHAT THEN,,,MY 2 BABIES WONT HAVE THERE MOMMY,,,,,MAKES ME VERY MAD AS WELL,,, |
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sickinwis
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Shelly, I too tested positive on the IGM and negative on the IGG. My llmd said that was indicative of a recent infection, which I know it wasn't. I did read some place that a long term infection can have repeatedly peaking IGM level's though. Yes, I believe your doctor will start treatment with this positive test. Also, many people never test positive and still have lyme disease, be thankful that your husband at least has a positive test to help in gaining treatment. Take Care. Barb |
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