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Anyone with Lyme disease?

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  • Anyone with Lyme disease?

    Back in November I was diagnosed with Lyme disease.

    This was just another diagnosis I could add to an already lengthy list.

    In addition to the IC, I also have previously been diagnosed with:
    migraines, tmj, carpal tunnel, fibromyalgia, chronic fatibue, ibs, hypothyroidism, chronic epstein barr, cmv, and there's possibly more...just starting to lose track.

    I was diagnosed with the IC years ago...and have felt like I've had a pretty good handle on it over the last couple of years.

    What's funny is in the past when the IC was flaring badly - I had some "secondary" symptoms...which at the time I thought for sure were just side effects from medication.

    Today - however, those "secondary" symptoms turned out to be the Lyme disease...and now my IC has gotten jealous and wants to start behaving badly too.

    Lyme disease is said to be highly under-diagnosed in the US because most docs use the CDC's criteria for epidemic SURVEILLANCE as the guidelines for diagnosis....which is WRONG WRONG WRONG. Lyme disease really should be a clinical diagnosis

    Anyway, it has been said that lyme can be the culprit for just about any strange symptom out there; it is said that it can mimic over 200 other diseases (some websites say 300) - one of those symptoms is.....
    you guesssed it...bladder problems.

    It has been speculated by some (don't ask me who - memory stinks) that Lyme could be a causitive factor in IC. I'm not saying I believe that, I just find it interesting...since I no longer believe that doctors know everything...that we are really just beginning to understand the human body and everything that can go wrong with it.

    So - that was my long way in asking:



    Yes, I have been tested & diagnosed with Lyme disease.
    Yes, I have been tested for Lyme - but test said "negative".
    My doc has mentioned Lyme - but I have not been tested.
    My doc has not mentioned Lyme - but I have many symptoms.
    No, my doc has not mentioned Lyme & I have no Lyme symptoms.
    No, and I don't even know what the symptoms of Lyme are.
    I have never even heard of Lyme disease.

    The poll is expired.

    DR. Wiseguy
    --Not a real doc--just a real wiseguy

  • #2
    hello my name is leanne and I am a lymie!

    I was DX this october after my chriopractor has suggested and suspected this back in august 2003 when I had bells palsey BI LATERL!!! I then had nerve damage in both hands/arms, then IC, then fibro... you get the point.

    My elsa test in 2003 was postitive but the GP did nothing further for testing as its rare to be +++ on that test. They rules out lyme based on the fact that you don't get lyme in so calif. (but they did not factor in I was a flight attendant for many many years and have been all over the US and the world.

    I requested a western blot in october 2004, it was tested through unilab and it was positive on panel 41... not positive by CDC standards, although clincally I met the criqteria.... that test then took me along the route of one rehmatologist who said there was no way I have lyme, 2 infectious disease drs locally, UCLA infectious disease dr, neurologist who treated my bells palsy to consider a spinal tap that one ID Dr wanted...(which the neurologist said NO WAY for lumbar puncuture and said go find a LLMD) and then the LLMD. I currently see Dr H in Malibu.

    I had the western blot IGG and IGM test done through Igenex about 7 weeks ago, on the IgM I was positive on panels 58, 66 and +/- on 18,25,23,31,34,39,41 IgG I was positive on panels 39,41 and +/- on panels 30,31,34,45,58,66... cdc standards I was positive on my IgG for previous infection and negtaive on my Igm due to only 2 panels only+ but based on my low white blood cells I then was CDC positive on both tests for a current and previous infection with lyme disease from a tick.

    I am on week 9 of antibiotic treatment, first 5 weeks 400mg doxy, week 5 I started 500mg zithromax, 400mg doxy and paquinel (sp?).... I am experiencing herxing every 20-27 days lasting for about 2-3 days. I am still on elmiron 200mg, dectrol la, atarax, bextra and expect in March to start comuing off dectrol, then once off of that I will come off atarax, then elmiron then bextra.... I expect as I progress like I am I will be off all my meds by the end of the year (YAY) I had to eliminate my birth control pill as it went crazy with all the ABX and stopped working.....

    So far most of my symptions are gone.... they ranged from fatigue, not able to sleep, IC, Nerve damage in both hands/arms, fibro, weight gain/loss, foggy head, eye sight loss, bells palsey, memory loss.... the list goes on.....

    I know I have IC..... Its been dx by my symtpions and the photos.... but I am hopeful that it will all go away (and so far.... I have slept the whole night through for the last 26 days out of the last 9 weeks!!!!) This all just started to happen..... I went 2 weeks, then had a herx.flare then for the last few nights I am sleeping 8+ hours with not waking up to pee and waking upon a very full bladder! (and not in pain!)

    sorry about the novel, I hope it helps..... there is a great board with all this lyme info... PM me and I will send you a link....
    Last edited by photomom; 01-27-2005, 06:31 PM.


    • #3
      This is an old thread I realize but it's still on topic. Anyway yes I have chronic Lyme disease and also have IC Symptoms too. I am 26 years old. I think I got bitten when I was 12, everything seemed to fall apart not too long after that. You're absolutely right that Lyme should be a clinic diagnosis as most tests are NOT accurate, in particular the ELISA test that most doctors use is really highly inaccurate.

      Any other Lymies out there?


      • #4
        surprisingly there are a lot of lymies here too..... I am sure others will post..... what treatment are you on?

        I will be going on IV in Sept..... I woudl say I am 60% better than I was 4 years ago.... but still not 100%.... I also have strep D in my urine so thats probably why my bladder is taking so long to get better.

        I hope your having a good day!


        • #5
          Hi photomom,

          Thanks for your reply. I haven't gotten in to see a llmd yet. My app't is in 3 weeks. I don't think I am going to take antibiotics though. I've already been on so many and none of them have done any good. I am also worried about what they are doing to my immune system.

          My bladder is still awful. I thought it was getting better but it doesn't seem to be.

          What treatment made you 60% better?




          • #6
            I am currently seeing a Lyme specialist, and there are very few. I found this person through 2 Lyme foundations. I have been dx with IC, fibromyalgia, hypothyroidism, all which started 10 years ago (except recent IC dx). I do believe there is a common basis for all of us having IC and so many related syndromes (IBS, etc). We may never know. But, I have to get my blood drawn from my local lab and I am to mail it to a lab that will run a Western Blot. I have not had this done yet.

            I was told that many times you are negative on the Western Blot if you have had Lymes for many years because your body is busy trying to build antibodies to it that it comes out negative. If you go through the antibiodic treatment first, then test, it will likely come out positive. The theory is that your body then stops working on antibodies to fight Lyme and then the test will more accurately show the titers (?). This is the general idea anyway. I am probably not providing the accurate medical definition of the theory but you get the picture.

            I am on elmiron 200 mg for over 6 months. No noticable difference but I am also taking 50 mg of macrodantin and I do know from experimenting that if I don't take the macrodantin, I'm in pain. I have no side effects from elmiron.

            I am way confused about the whole thing but in my mind, since the macrodantin is the one thing that is helping I think I may indeed have Lymes. Or some other bacterial organism besides or in addlition to IC.

            Seems to me we need more doctors willing to think outside the box. Have any of you watched the abc show Medical Mysteries? Interesting wierd REAL stuff that seems to be unexplained by most doctors but then there's one doctor who thinks outside the box and finds an answer or identifies a medical mystery--there may not be a treatment, but at least an identifying name.

            That's my two cents.



            • #7
              Salt & vitamin c for lyme

              I just recently (over a week ago) started the vitamin C & salt treatment for Lyme. I am using the CMC salt tablets and 1 gram vitamin c pills. I am up to 8 grams of each daily now plus lots of water (4 litres or more per day).

              I'll be seeing a lyme doctor in about 10 days as well.

              take care.


              • #8
                wow, this is very interesting PlainJane. I emailed this site off to my friend in another state that has been through IV antibiotics and hyperberic chamber treatments and she is still not feeling well. When I saw the thread-like worms in the picture, it was exactly what was discussed on the abc show Medical Mysteries. These people said that they saw threads growing out of their body. I thought to myself at the time that I wondered if it were Lymes that they had.

                I am writing a letter to my family doctor about my visit to the Lymes specialist and what he has me doing. I want my primary doctor to be the "director" of my health care. She may not agree with me, but I think you need someone to have all of your medical treatments on record as the coordinator. I am writing the letter because I think she's going to poo-poo me if I try to explain it. But I believe you need a doctor to coordinate or have all of your treatments documented. I have my urologist and gyno send all tests results to my doctor.

                I am absolutely certain that I have something going on in my body that has created the three major health issues that I have been separately diagnosed with and they are: Hypothroidism, Fibromyalgia, and IC. I also had adenomyosis of my uterus and had a totally hysterectomy. As well as Atrial Flutter (heart palpatations)--I had it really bad for one month and it just stopped on it's own. Two cardiologists later, no idea why. AND I have brain lesions suggestive of MS, however 3 neurologists say they don't believe I have MS. Lymes affects every organ in your body. Lymes and lack of B12 can lead to brain lesions. When treating Lyme with antibiotics and you take B12 shots, the leasions go away according to one path report I found and my Lymes doctor concurs. Also, my Lyme doctor went to far to suggest that Alzheimers was the result of untreated Lyme. Interesting isn't it?

                I am lucky I have no side effects from Elmiron, but I can tell you that through experimenting being off of it for a while and taking it again, I really see no change. BUT, when I don't take my Macrodantin (50 mg) a day, big difference. Burning upon urination and blood. Plus, I have had huge CULTURED infections pop up WHILE I take Macrodantin. I THINK diet has something to do with it, but I haven't been able to pinpoint any certain food that triggers more symptoms. The only one I noticed for sure was flavored decaf coffees give me urgency and pain.

                Please keep me posted on whether you get results from this salt treatment you are on and also what the Lyme doctor has to say about this as well as your treatment from him/her. I haven't done my Western Blot yet, insurance doesn't cover it and it's $200 plus whatever it will cost me to have the blood draw. I am supposed to be giving myself B-12 shots and I haven't yet. I am on Nystatin and Diflucan first to first treat Candididasis. I have not whole heartedly taken this either as I am slightly skeptical. He also said I was iodine defiecient and said to take iodine but I am on Synthroid and I am a bit skeptical of that too which is why I need to get my family doctor involved.

                Anyway, sorry for the log response.


                • #9
                  I have been dealing with IC and lyme symptions for years.... done lots of research (as my husband as too since he has lyme and our son has lyme) We see one of the very best LLMD and LLND in the world and they both said NO WAY NEVER to the vit C salt.... espically if you have IC symptoms it could be worse for you.

                  Kayrol, I would be wary of finding a lyme specialist through the lyme foundations...we did the same thing 4 years ago when we were desperate.... none of those Drs that they mailed us info about were indeed LLMDs. Personally I hope you have the time and engery to research this correctly(and its hard cause LLMDs are not well published with insurance companies or online)

                  There are other support online groups out there that can point you in the right direction. feel free to PM me if you want some links to go visit.

                  Lyme (not lymes) is a clinicial DX as it is also reconfirmed with WB tests. Any lab can do WB, its suggested to use a lyme literate facility (Igenex) for your testing. Although I did test + at unilab, my test at igenex was CDC +.

                  There are other co infections that ticks can transmit also.... a LLMD would be knowledgeable in treating those as well, cause in a lot of cases you don't get better unless you treat the co infections first.

                  Best of luck to you!

                  FYI my Lyme treatment is on hold. We found out a few weeks ago I am pregnant. So far I am 6 1/2 weeks pregnant, no lyme symtioms and I had to stop all my meds but added amox to prevent my unborn child from getting lyme from me. Studies show I have a 99% chance of NOT passing it onto him if I can stay on amox the entire pregnancy. All the Drs are supportive and looks like (fingers crossed) that all will be well and it will be an un-eventful next 7-8 months.

                  We had an U/S and its inplanted and we should be able to hear the heart beat at my next appointment. The only thing that sucks is cause of my ASD closure and amox use during pregnancy I will have to see a perinatologist through out my pregnancy. I guess I can be a liability to my OB!

                  What a crazy surprise but a wonderful blessing in disguise!


                  • #10
                    Yes I have chronic (active) Lyme disease, Babesia and Bartonella.

                    I saw a Lyme specialist in New York City on Nov. 13th and he strongly suspects that I have chronic Lyme disease and babesia (a co-infection of Lyme). The tests for it aren't that reliable and I tested negative but have many of the symptoms (air hunger, extreme fatigue, nightsweats, excessive sweating during the day). Babesia is a malaria-type infection.

                    As well, the specialist examined me and found a classic Bartonella rash on my arm. It has been there for many months but nobody knew what it was. Well he knows. Bartonella is another Lyme disease co-infection.

                    So now I am on treatment: Cedax (cephalosporin antibiotic), Azithromycin (antibiotic), Mepron (anti protozoal for babesia), Diflucan (for yeast) and Intramuscular Bicillin antibiotic injections. I am also on treatment for my thyroid because now it is low. As far as I know my cortisol levels are going up but I will have to have that re-checked soon.

                    The Lyme specialist said that Lyme seems to love the female bladder. It can really irritate the bladder. He has treated thousands of patients and has been treating Lyme for 15 years so I'm sure he knows his stuff.

                    I am not on the salt & Vitamin C treatment now.