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    Old 02-15-2006, 09:32 AM   #1
    purplepiegirl
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    Lyme after all these years???

    Ok here is my story.... about 11 yrs ago while living in upstate NY I had a circle rash on my foot with a dark spot in the middle. I didnt think anything of it but became very sick maybe 2-3 wks later. Mom took me to emergency room and was diagnosed with mono. Did not mention rash just extreme fatigue, fever, achey etc. I took anibiotics (didnt finish dose im terrible about that)
    Jump ahead a few years.. Terrible headaches and fatigue went to doc to ask for a lyme test and was laughed at. He said that as long as I took antibiotics I would have gotten rid of it.
    Currently I have had a terrible time for about 2 yrs not feeling well. Brain fog, nausea, low energy, irregular periods, muscle twitching, nasty bowel movements, heart palpitations, cold hands, jumpy feeling. Recently diagnosed with IBS.
    Im sorry this is so long. I wanted to firnd out if lyme is even possible after such a long time and if so how do I get tested.

    Last edited by purplepiegirl; 02-15-2006 at 09:33 AM.

     
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    Old 02-15-2006, 10:16 AM   #2
    Betterdaysforme
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    Re: Lyme after all these years???

    Dear purplepiegirl,

    Like your name. Welcome to the site. So glad you found us.

    If you saw a rash it very well might be lyme and no a few weeks of antibiotics won't get it. You may also have one of the co-infections that are related to lyme and that could be making you sick too. Babesia comes to mind when you say you have heart palps.

    It is just amazing to me that so many doctors poo poo the idea of lyme when you live in an endemic area for lyme. What are they thinking! Of course we can thank the CDC for half the problem but there are doctors out there who would not have laughed at you. Preferably an LLMD (lyme literate medical doctor).

    The best place to be tested is thru Igenex in California as they have the best equipment and use 100% antigens. You can pull them up on the website and they are also willing to field questions if you call them. Do not rely on Quest or Labcorp because of the antigen that is used. You can order the test kit from Igenex but must have a doctor draw the blood. I should say willing doctor. I believe labs will even draw the blood for a charge since you will have to pay for the test anyay because a lot of insurance companies won't pay up front if at all. Believe me it will be the best money you ever spent whether the test comes back negative or positive. It should be drawn at the beginning of the week so it doesn't sit in transit too.

    I believe I was bitten in Maine 5 1/2 years ago and never had the bullseye mark. You are lucky you at least had the rash and remembered it. I didn't get sick until 2 months later and feel my immune system was handling it until I stressed out from personal problems. I started with a sinus infection and then had some weakness in arm, hand, and leg (all left sided) with numbing in neck and head. I was told MS but knew that was wrong as I was 52. That is kind of old for first time MS symptoms.

    It has taken 5 years to finally be diagnosed and doing something about this but have lost a lot of my mobility due to the time issue for treatment. I have a long road ahead ahead of me and severe mobility problems and hope you don't put off testing as the problems only get worse the longer you go. Let us know what you decide and if you post where you are we can direct you to an LLMD in your area. You may want to get the bloodwork done before seeing a doctor because it takes a while to get in to see one and it would be nice if you had the results in hand. Also bear in mind that the test is flawed (which the CDC readily admits to) so even if your test is negative you still may have lyme and need to be diagnosed symptomatically by an LLMD.

    I don't want to scare you but time is very important in fighting this disease as it will only get worse as time goes by. Keep us posted on what you do and good luck.

    Maureen

     
    Old 02-15-2006, 11:07 AM   #3
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    Re: Lyme after all these years???

    Thank you for your informative response. I forgot to mention that the doc that laughed at me was in VA. I did however tell him I have lived in upstate NY my whole life so it would not be impossible to contract lyme. I remember the whole thing like it was yesterday.
    I have actually been on the healthboards for awhile and have been posting on the ibs board, low blood pressure and digestive in hopes of getting some anwsers. Unfortunatly no luck!
    I have checked out the website you suggested but can not find were to order the tests. Im going to my doctor tom but they use lab corp for blood work. I have already had the regular blood tests taken but the only thing that has ever been abnormal is my wbc was a little low. My doc retested and said it was normal again.
    Im just so sick of feeling this way and it is def. gotten worse over the years. I have 2 little ones at home and my quality of life it becoming terrible. I dont want to ever go anywhere anymore. I am afraid the docs just think Im depressed which I am def not. If I am it is only due to the fact that I feel terrible all the time. Its the weirdest thing, one minute Im fine then the next I feel like im in a cloud. Its like this episode, as I refer to it. When its really bad I even cry.
    Well enough venting!! Im very sorry to hear of your sickness but it must atleast feel good to know that you are diagnosed and hopefully on the road to recovery. I will search your messages because Im very interested in your story. Thanks again

     
    Old 02-15-2006, 11:29 AM   #4
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    Re: Lyme after all these years???

    Hi purplepiegirl.
    hope you find compnay and comfort here.
    Jules xx

     
    Old 02-15-2006, 11:39 AM   #5
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    Re: Lyme after all these years???

    Hi Purplepiegirl
    I think you are on the right track. Ask questions all you want. We all have been there. I have neuro lyme. Was diagnosed 18 yrs ago. It does get worse over time. Give us an idea where you live and someone will post a LLMD that you can contact. We're here when you need comfort, answers (if we know them), and some humor.
    Prayers to you....Marsha

     
    Old 02-15-2006, 01:26 PM   #6
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    Re: Lyme after all these years???

    purplpiegirl:

    Welcome. Sorry to hear you have been sick for so long and I annoyed that a doctor would laugh at a patient. I was also misdiagnosed.

    Luckily I found a good LLMD and this site.

    If you post your town and state, perhaps someone can recommend a good doctor for you.

    Hang in there. If it turns out you do have Lyme, it is curable and you will feel better someday.

    Peace and health to you.

     
    Old 02-15-2006, 03:53 PM   #7
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    Re: Lyme after all these years???

    you guys are so comforting! Thank you so much. Im in area. I dont have insurance and have already spent more than I want on Dr.'s that can only say I might have IBS. If anyone can recommend what Dr. to try next I would def appreciate it. Would I see a family practice or a specialist first?

    Last edited by purplepiegirl; 05-22-2006 at 09:34 AM.

     
    Old 02-15-2006, 04:49 PM   #8
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    Re: Lyme after all these years???

    I was also told I had IBS (I certainly had the symptoms). Also told I had fibro. And everyone one this board has a story to tell how they were misdiagnosed.

    And this is an expensive disease, whether you go after it with abx or naturally.

    And with Lyme it is normal to cry a lot and feel really disoriented. A result of the ammonia the Lyme bacteria creates. Don't believe any Dr. that tells you that you are a nut case!! although most of us here would call ourselves nut cases :")

    And you are correct - the depression is from not feeling good.

    Get yourself tested so you know. Then find a good Dr. I think Maureen explained about the testing, I'm not familiar with Dr.'s but someone will be along that can give you that info.

    Just hang in there - it is so hard to be sick and take care of children. There are answers out there, we just need to keep looking.

    Thinking of you,
    Jeanne

     
    Old 02-15-2006, 05:10 PM   #9
    deejavu
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    Re: Lyme after all these years???

    Hi Purplepiegirl,

    Welcome! You have come to a good place where there is much knowledge and support.

    The rash that you had sounds like the typical "Bull's Eye" which alone itself merits that you are infected with Lyme Disease.

    The good news is that Lyme is curable with the right treatment.

    As everyone said, it is so important to get tested by IgeneX Labs and see a knowledgeable doctor. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa. Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

    Lyme disease is the second fastest growing infectious disease in the US after the AIDS Virus (my guess soon to be #1).

    I also suggest you buy the book "Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders" by Karen Vanderhoof-Forschner, 2nd Edition.

    Unfortunately, most Lyme patients have to travel long distances to see a Lyme Literate Medical Doctor.

    Since you live in Virginia, you have a choice to go to North Carolina to the Jemsek Clinic or up north to Washington to see Dr. Kenneth Singleton in DC.

    Both are excellent Lyme Doctors and come highly recommended.

    Please ask questions as education is the best defense to this disease.

    I hope to hear from you,
    Denise

     
    Old 02-15-2006, 06:29 PM   #10
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    Re: Lyme after all these years???

    Im going to my dr tom. for my annual. (Not the same Dr. that laughed). She keeps thinking that it is epstein barre. What should I tell her? Can you ladies tell me some of your symptoms and when you were diagnosed?

     
    Old 02-16-2006, 02:56 AM   #11
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    Re: Lyme after all these years???

    My thought is to tar and feather the doc who laughed. How demeaning! Maybe when more people stop idolizing MD's their arrogance will start abating.

     
    Old 02-16-2006, 05:25 AM   #12
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    Re: Lyme after all these years???

    sounds like a great idea! He was a young arrogant guy too.. I barely go to the dr. and for him to laugh at me when I finally did was heart breaking. Now everytime I go to the Dr. I feel like they think Im crazy.

     
    Old 02-16-2006, 10:16 AM   #13
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    Re: Lyme after all these years???

    Dear purplepiegirl,

    First let me tell you that you could have gotten lyme in Virginia. In the beginning it was assumed you had to live in Connecticut to get lyme. I guess ticks know when to turn back if they have reached the state line. Actually lyme has been found in 49 states and I am presuming the one without it is Hawaii although most doctors seem to think it is whatever state they are living in.

    They cloudy feeling you are experiencing is referred to as brain fog and is one of the top symptoms. To be honest with you I never felt I had this symptom but after 5 years and finally some treatment I do feel some short term memory loss. I can read something 10 times and still not remember what I just read. My family has always joked that if I develop alzheimers this family is in trouble. I kid you not I can still visualize the places we stayed on or honeymoon bedspread colors and all and that was 37 years ago.

    Maureen

     
    Old 02-16-2006, 08:13 PM   #14
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    Re: Lyme after all these years???

    Hi purplepiegirl,

    Welcome to the board.

    The rash you described sounds like a classic erythema migrans (em), or Lyme rash. Furthermore upstate New York is one of the most Lyme endemic regions of the country.

    Yes, it is possible to have Lyme for that many years. It can stay in the body, recessing further into deeper tissues. It can seem to "go away" during times of dormancy only to show up later.

    It is unfortunate that you weren't correctly treated as soon as the rash developed (for the record, at least half of those with Lyme never have any rash at all or have an atypical erythema migrans). The recommended treatment is 4-6 weeks of antibiotics if it is caught immediately. The reason for this is that unlike some bacteria which have a reproductive cycle of only a few hours, the Lyme organism, Borrelia Burgdorferi , has a reproductive cycle of 4 weeks. If the disease has already disseminated, as it would have in your case several weeks after the em appeared, this would probably already be insufficient.

    Many doctors have a great deal to learn about Lyme disease and proper treatment. Many of them treat with outdated protocols, and neglect to test for co-infections. The doctor who laughed when you asked about Lyme should be slapped. Probably trying to cover for his ignorance of the subject. Antibiotics, unless it was a sufficient dosage and for a sufficient period of time, would likely not have got rid of it especially once it has disseminated into deeper tissues.

    Your best bet is to be evaluated by a Lyme literate medical doctor. The most reliable testing available is a western blot through Igenex labs in Palo Alto, which is the most reputable lab. Many people have had to travel out of state to get to a competent doctor.

    Bear in mind that there is NO test which can absolutely rule out Lyme. The most frequently performed test, the ELISA, misses over 60% of cases. The more accurate test, the Western Blot, is still not completely reliable and is generally only given if you have a positive ELISA. Which makes no sense at all but there you have it. So in other words a negative test does NOT always mean that you don't have Lyme. For this reason, the CDC states that Lyme is supposed to be a clinical diagnosis with the test used to help confirm.

    Some reasons why a test can come back negative in a Lyme infected patient:

    1. The sample was taken too soon after infection for your immune system to have mounted a defense.

    2. You are producing a detectable level of antibodies, but the lab made an error.

    3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)

    4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.

    5. Your immune system is compromised and not responding properly.

    6. By taking antibiotics early in the disease, the immune response may have been aborted.

    7. The bacterium has changed its makeup and the immune system hasn't noticed it.

    8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.

    9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.

    In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) never developed a positive Western Blot.

    Someone recommended Karen Vanderhoof-Forschner's book, I second the recommendation, it is highly informative and helpful.

    You have found an excellent community for support and information. This is not an easy disease to deal with and it is vitally important to educate yourself. You really must be your own advocate to get anywhere with this. Hang in there, there is good treatment available.

    Last edited by TINUVIEL; 02-16-2006 at 08:14 PM.

     
    Old 02-17-2006, 06:24 AM   #15
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    Re: Lyme after all these years???

    Wow thank you so much. You have really explained alot. I went to the Dr. yesterday and since talking to you guys Ive had the courage to ask her about it. She was very sweet and took me seriously but she admitted she knows nothing about it. She wants to send me to the lab to get tested for antinuculear antibodies and wrote down lyme. But she only works with Lab Corp. Im at a place were I feel like I just want to go and get it done to see what it says but I cant afford to waste anymore money. What do you all suggest. Has anyone ever gotten a positive from lab corp? Should I just go strait to a Dr. that specializes in lyme?

     
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