Lyme Disease??

Discussion in 'Fibromyalgia Main Forum' started by HppeandMe, Aug 13, 2005.

  1. HppeandMe

    HppeandMe New Member

    I started having symptoms of this horrible disease one week after I received a dog who was sent to me from Texas. He arrived via airplane. As I got him in my car I looked and there were about 40 very small ticks on him. Of course dad or the children were not going to remove the ticks. So mom was picking them off with her fingers. When we got home I was so worried about the dog (it was a Sunday night and our vet was not open otherwise I would have taken him there immediately). Anywyay, because the vet was closed I continued to remove every single tick off of my new poor puppy. They were very small ticks and I can't imagine most people seeing them on themselves. My dog had mostly a solid white coat otherwise I would not have seen the ticks. The dog is now 2 years old and is fine. The only ones displaying symptoms are me and my 3 year old dog (he is my love). We both look at each other all of the time like this sucks. He runs up to me when he knows I am in pain. He is always tired and and seems to have difficulty jumping. No I haven't had either of the dogs checked for Lyme because it is more expensive than a human Lyme test and the accuracy is less than the test for humans.

    I had no idea at that time that you were supposed to use plyers to remove ticks. Now I am extremely Lyme literate. Have a question about it and I may very well have the answer.

    By the way, the dog is now 2 years old and is fine. The only ones displaying symptoms are me and my 3 year old dog (he is my love). We both look at each other all of the time like this sucks. He runs up to me when he knows I am in pain. He is always tired and and seems to have difficulty jumping. No I haven't had either of the dogs checked for Lyme because it is more expensive than a human Lyme test and the accuracy is less than the test for humans.

    Anyway, the doc who 1st saw me said that I just had some sort of weird flu and that it would pass. I was 29 and it was 1 month to my 30th birthday and almost 2 years later I am a horrible mess.

    Some of my doctors just take it as a coincedence and say I have CFS. Others have treated me with antibiotics and call it chronic lyme.

    I am very confused about what to do about this at this point. What do you think Lyme or CFS? By the way, I have had numerous Lyme tests. 3 from Igenex with the western blot coming back as Equvelent. I also had one with the FFC that came back as Equivelent )Quest). No full postives ever.

    I too like you have read and heard that CFS and FM comes from Lyme. A really great book that I would recommend to everyone is "Everything you Wanted to Know About Lyme Disease". I think most of us would be shocked. I know I was when I read it. Anyway, I hope my story sheds some light on Lyme, CFS, and FM.

    Much Love and Hope for you all!
    Hope
  2. gottagetbetter

    gottagetbetter New Member

    You can go to the health boards lyme site. Ticker on the board can point you in the direction of a LLMD and some help for your doggie too. NCgirl on that site has a German Shephard that has lyme and that is how she actually found out what was wrong with her(her vet prescribed meds for lyme for her too). Hope this helps!!

    ~P
  3. HppeandMe

    HppeandMe New Member

    Bump for more response.

    Thanks for the 2 very wonderful responses thus far!
  4. june-bug

    june-bug New Member

    When I was 13 I woke up with half of my face paralyzed. It was summer and I just got back from camping. I had achey shoulders & felt tired, too. Drs tried to figure it out & I got a lyme test which was negative they gave me a whole whopping week of abx just incase but I was told it wasnt lyme and I couldnt remember a tick bite . My face got better after 3 mos & all was forgotten. Occasionally I would get severe headaches and feel tired but nothing so unusual until I turned 29 2 years ago and got all of the lyme and or fm symptoms. Like you I was diagnosed as chronic lyme with a western blot from Igenix which was equivalent in IGM but negative Igg and the same results on a standard elisa assay. Second opinions got me a few FM diagnosis' also.I have a few friends in our same boat who have gone to lyme literate dr.s and have been on and off abx for years with no results. Its scary because theyve spent thousands of $$$ and are no better than I am after the standard 1 month of IV treatment I recieved. Im not sure what to do but the other post is right, you can literally run yourselves in circles. Im just sitting on the fence right now...let me know what you decide, and if you think yours is lyme or FM.
    BEST OF LUCK June-Bug
  5. jarjar

    jarjar New Member

    Did you take Zithromax for 5 days before you did your Igenex western blot?

    Jar
  6. ANNXYZ

    ANNXYZ New Member


    I have to say I REALLY appreciate the time you put into
    explaining the devastation of lyme disease seen through the eyes of real people . Thank you .
  7. HppeandMe

    HppeandMe New Member

    It's Me! Hope who started the thread. I am so sorry I didn't mean to cause such a debate. I do appreciate all of the feedback though.

    I also have an opinion on this and have been doing research on my own. I do believe that the CDC has been hiding information about Lyme because the fact is that Lyme disease can be so devastating if not caught early that if they let out the truth so many North Eastern's would move. I have read about this over and over.

    Two things. First I had read that back during the American/German War ( I believe World War II but my memory is fading and I am still young) the Germans dropped billions of Lyme tics on the North East part of the United States. There were so many people who were mysteriously infected by this and they were not sure what it was at the time. They did however find out and have been trying to keep it a secret ever since. However, someone did speak and this has now been written about in books. I believe one of the books I have read wrote about it in "Everything you Need to know About Lyme Disease", but don't quote me on which book it is. If anyone really wants to know I will go through my books.

    Secondly, I was in Canada visiting one of my friends and I woke up in the middle of the night to a weird noise. I turned on the light and this black thing came flying at me. I started screaming because it was a bat. My husband hollered turn out the light. So I turned out the light, ran out of the room, and closed the door. My husband was stuck in the room with the bat. Anyway, after asking my friend where the nearest bat free hotel was I arrived home from the U.S. This is when I got my dog with all of the tics. That was 2 years ago. I went to go see a doctor (Infectious Disease doctor) to inquire about Lyme and she had asked me if I had been out of the conuntry and if anything had happened. I jokingly had told her about the bat situation. She took it way out of proportion and called the CDC right in front of me. They immediately recommended I have rabies shots. I said unless they will help me for my symptoms that I do not want to have them. I was forced to give them my husbands information as well. I guess I shouldn't say forced but they did scare me a bit. I told the CDC that I was particularly worried about Lyme Disease and they brushed it off. I told them that I had an equivelant Lyme test and they told me that meant a negative Lyme test and the CDC does not report negative lyme tests. However would you believe my husband and I have been bombarded with phone calls and certified letters urging us to have the rabies vacinations done. It has been so long we didn't feel we need them. I am to sick to worry about that situation. I confirmed with the doctor and the CDC that my current symptoms would not be resolved from the shots but that it would help if I had rabies. Anyway, to make a long story a bit shorter... Why is it that they were so concerned about Rabies after it had been so long but totally blew off the fact that I am desperately ill and may have Lyme and weren't willing to help me with that.

    By the way, I never went back to see that awful doctor. She spent an entire hour or more with me on the phone with different departments of the CDC and totally ignored anything about Lyme. By the way she didn't even do an exam or any blood work. If I could give her name I would.

    My theory is that I do very possibly have Lyme and it lowered my immune sysytem so much that I was suseptible to everything. Eventually I ended up bed ridden for long periods of time and in the ER. I do feel like all of these things brought on the other things like EBV, B. Pneumonie (sp?) and now that I also may have Chronic Fatigue. Both Lyme disease and chronic fatigue fit me like the best pair of jeans I have ever had!

    Anyway, thanks for reading and thanks for your posts!! They mean a lot!
  8. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I'm sorry taht all the time and effort we put into answering your compelling question got deleted. I honestly dont' understand it. I esp. don't understand why even my first reply to you, which didn't debate anything w/ anyone even got deleted.

    I'm just starting to really look into Lyme myself and trying to form an opinion on the raging debate and contraversy surrounding it. Your last post is really interesting, I'd like to reply to it, but I'm not sure you'll even get to read this.

    Lamotta,
    Yes it was fun while it lasted. this was my favourite thread, and I was hanging on everyone's words and honestly standing on my head not to offend anyone. I thought different opinions were incouraged.

    I'm sorry if I offended anyone.


    Jeanne

  9. dontlikeliver

    dontlikeliver New Member

    Surely, to debate should be discouraged,should it?

    DLL
  10. BrendafromTX

    BrendafromTX New Member

    Hello fellow Lyme Friends!

    This is my first time to post a message here (I'm a newbie).

    I have been suffering with FMS for over 10 years now. I just recently went to the Fibro and Fatigue center to look into new treatment options, and found out that I also have Chronic Fatigue and Lyme (Igenix did my Lyme test). My mother is also going to the F&FC and found out that she has Chronic Fatigue and Chronic Lyme. She has severe neurological damage from the Lyme, as well as the typical Chronic Fatigue Symptoms.

    The Fibro and Fatigue Center (website is: url for sponsored site removed) is treating Lyme with Cumanda (it's an herb that you put on your tounge twice a day). The Cumanda is suppossed to kill the Lyme (although it takes a good 6-9 months to do so). I also take Bromelin pills to break down the Fibrous barrier that the Lyme hides under. I also take Burbur Detox (a liquid that you take 30 minutes after the Cumanda that flushes the dead toxin out of your body).

    I had some pretty severe side effects at first (severe fatigue, shooting pains all over my body) but after about 3 weeks they have subsided. I can't really tell if it is helping or not, but I heard that the research from it is coming from Germany and that it's getting good results.

    I will do a seperate post sharing my experiences with the Fibro and Fatigue center so everyone can see how they are helping me get better by correcting the imbalances in my body with herbal and prescription remidies. But for this post I wanted to let you know what they are treating me with now for Lyme.

    Please go to their website, it's a wealth of information. The clinical studies section is very informative also. The only bad part is that insurance doesn't cover the majority of it (since it's non-traditional medicine), but most of the lab work is covered.

    I pray that we all can get over this illness soon. With each others help and information, it could be possible.

    Best of luck to you all!
    BrendafromTX
  11. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    shouldn't debating be discouraged?

    If my nay is not a yay, surely I'm not allowed to say. I could be seen as debating about debating.


    Stormy,

    Well I guess there are certain people who are made comfortable by all you say, I get not swearing, being abusive, or being mean, of course I do. But this is supposed to be a support site, a safe place where all can feel comfortable. But I'm not comfortable at all. I can't be myself, if I share a firm opinion and back it, and it's not the popular one, my threads get deleted. Then I have to sit numbly by and watch everyone else talking about what I got deleted about, several times now. This is going on now in another thread. And I don't begrudge their own similar lively discussion on Lyme, I'm at least glad I get to read about it, but very frustrated that I dare not engage. This has happened several times.

    And I guess I just don't fit in, because I have a wicked sense of humour, sharp sense of sarcasm (survival of fittest in my family, who carry a double helix of sarcasm gene) and I enjoy being challenged in a respectful exchange of opinions. Esp. if the opinions differ, because if they don't, then I'm not learning something new. I'm also strongly opinionated, but its not engraved in stone. At only 38, I've at least learned I've been wrong enough times, it's bound to happen again.

    Anyways, I don't want to do a dramatic flounce and delete my membership, and I don't want the humiliation of being banned. But I seem to be brillo pad woman here, and I'm already pretzelizing myself to not misstep. But I can't keep devoting so much of my energy to this board and have the topics that meant the most to me deleted. That hurts much more than someone being chippy to me.


    Jeanne
  12. tansy

    tansy New Member

    reading debates between people with opposing viewpoints, even more when they would each provide "scientific evidence" to back up their arguments. I would not have improved this much had it not been for all the info and the discussions.

    Jeanne

    Your posts are direct but I cannot fathom how the ones I've read could be considered offensive.

    Lamotta

    I am pleased you have realised the difference when subjects are debated using the written word; readers cannot see the author's facial expressions nor hear the tone of voice.

    I realise you are on a mission to protect us from ourselves and from what you as an individual believe is misinformation. What you need to be very aware of though is the positive health gains achieved through the very measures you feel we need to regard as quackery or in your own and personal opinion are not scientifically sound.

    Tansy

  13. vloga

    vloga New Member

    Hi Hope.

    Can't believe that, on the day I first log in for about a year, wondering whether anyone has had Lyme disease, yours is the first message I see!

    I've had CFS/CFIDS for over 15 years now; thought originally it had come from stomach poisoning at work. The more time goes on, the more I wonder whether it was Lyme disease all along. The one day in the year I visit my Mum we go into the forest.... Several months later both she and I have had the typical Lyme disease 'ring', but neither of us realised the other had had it for ages. Then to develop CFS the following year.........

    Does anyone know whether there's treatment years after the event for Lyme disease? When I looked a couple of months ago elsewhere the medics' consensus seemed to be that there wasn't much point taking antibiotics for Lyme disease if it hadn't been tackled in the first few months after being bitten.

    Whatever, the result sure feels the same - typical CFS symptoms.

    Hope this helps !

    Vloga
  14. HppeandMe

    HppeandMe New Member

    Hi Vloga-

    I am so sorry you are to suffering from this. If you ever need anyone to talk to I am here and would be happy to share my info. with you. I wish I had more people in my area where we had support groups or other like us to talk to.

    Good Luck to you and let me know what happens with you.

    Keep us posted!!!!
  15. HppeandMe

    HppeandMe New Member

    I am really bummed that the information that we so desperately needed and that you guys were giving was deleted. I am sure it would have helped some of us!!!

    Jarjar- Just wondering why you asked about the Zithromax? I wasn't on it before I took the tests but they have me on it now for something non-related but related to CFS.

    Can't wait to hear back! ;-)
  16. matthewson

    matthewson New Member

    Especially with controversial subjects and treatments, we need all sides debated so that ultimately people on this site can determine for themselves which treatments they want to persue based on what they feel is proper.

    If only one side is presented, then the people on this board lose out in the end. It is not my intent, nor probably is it lamotta's intent to convince the people who are already seeking controversial treatments to discontinue it. But, for people who are debating how to attack their treatment, they need all information presented.

    I have said a lot of times in my posts that we just have to agree to disagree. But, the information still needs to be put out there.

    Take care, Sally
  17. dontlikeliver

    dontlikeliver New Member

    But, Lamotta.....

    In response to your statement above:

    "I say the things I say on here for 2 reasons:

    1) I want to express my medical knowledge with the intention to help protect and benefit people

    2) To provide opposing view points so that newbies and those less experienced are provided both sides of the story and not just a monopolized version of the truth. "

    Why do you think you're protecting people? You may be harming them by attempting to get them to steer clear of something, which may give them their lives back. Your posts so far appear to be just mostly your opinion on a subject, which by your own admission you do not have personal experience of.

    You appear to be rather selective even of the stuff you post from the conservative camp, for instance nothing about the persistence of Lyme disease after treatment, about which they have also written. How can you assume that out of the "CFS" and "Fibromyalgia" patients here, none of them, for instance, do not have a relapsing case of Lyme that needs re-treatment? Some, admittedly have had a blatant case of Lyme and prior treatment, which may have failed, and appears to have failed.

    Again, it all makes me wonder why you posted on here that you 'spent years on a Lyme disease board' when you said that you did not even have Lyme, but that it was only briefly suspected. Surely, it was not suspected for several years? Why, after it was 'ruled out' did you still hang out in "Lymeland"? You mentioned that people who visit and posts on forums for another diagnosis other than their own, are hypocrites.

    A good thing to do might be visiting the waiting room of an LLMD - an MD on the FRONTLINE (rather than academic hypothesizing about Lyme and NOT dealing with actual Lyme patients long-term) AND talk to the patients in the waiting room. It really is an eye-opener JUST sitting and evesdropping on people sharing their experiences, and their overwhelming gratitude of being given their lives back by brave LLMDs. It may give you a more balanced view. IMO

    2) Why would your reason for being here be: "To provide an opposing view"? And, if it is, then please at least provide a good argument (not argument as in fighting but discussing/debating) rather than posting flawed studies by the "Simon Wessley's of Lymeland".......why not point out all the studies about people who have died from taking long-term antibiotics? (maybe because there aren't any but they are purely hypothetical fantasy....but there are plenty of folks, denied long-term abx, with Lyme, who HAVE died).

    What does a chronically ill patient, who MIGHT have Lyme - or one even with positive tests and history of persistent or relapsing Lyme have to lose by taking long-term antibiotics? They may lose their chronic ill health.

    Your average run-of-the-mill M.D. usually has no problem dishing out long-term antibiotics for ACNE....but for people who've lost most of everything due to Lyme, they will happily, and apparently with a clear conscience, deny them treatment, which has and is working for lots of folk. So, clearly acne sufferers, I guess are considered by the likes of yourself as suffering a much more serious illness than Lyme patients are. What is wrong with this picture?

    We definitely (agree to) disagree.

    Have a good one.

    DLL




    [This Message was Edited on 08/18/2005]
  18. ANNXYZ

    ANNXYZ New Member


    You made EXCELLENT points . I do not understand why folks dismiss the idea of chronic relapsing lyme , when we have enough info to know how insidious this stealth bacteria
    is .