What are Some of the Symptoms of Lyme?

Discussion in 'Lyme Disease Archives' started by greatgran, May 4, 2008.

  1. greatgran

    greatgran Member

    This lyme thing is confusing to me as with most things these days.

    Could someone please share your symptoms, my lyme test was negative but not sure what lab did it, I do know it wasn't Igenex.

    How do I approach my doctor for futher testing when she says no lyme?

    I have googled lyme symptoms but still uncertain as I seem to have more cfs symptoms than lyme, but have doubted my cfs symptoms from day one.

    With lyme to you have good days then overdo and have bad weeks? Is this to a roller coaster disease.

    One thing I do know I always feel so much better when taking and antibiotic but the doc says that is because it decreases my inflammation. I take the antibiotic for sinus infections and often.

    Thanks as I am calling my doc today for an appointment.


  2. victoria

    victoria New Member


  3. mollystwin

    mollystwin New Member

    I was diagnosed with CFS before I got my lyme diagnosis. Fatigue is still my worst symptom.

    Yes, when I overdo on good days I will have a bad week. This has improved greatly with my treatment, but it takes time to recover. I still have to be careful not to overdo.

    Good luck with your doctor appointment.

  4. hi all,

    im not told i have lyme,they wont test me,but im working on being tested,dont know from where, or who, as yet.

    i have tiny tread like things in my stool/poo.while its in the toilet bowl.ive had this my whole life.

    i still see them now,but they dont move like worms.or i cant see them moving,with them being thin.

    i had blisters on my bottom whiping hand, for many years,but recently they have gone.

    and the only new thing im eating is pumpkin seeds.two table spoon fulls in my quaker oats porridge.

    im eating these seeds to kill blood and gut parasites.i think its lyme or malaria from any biting insect.

    i read on a site five weeks ago, that pumpkin seeds have many good properties,and kill tape worms, and parasites.and makes finger/toe nail psoriasis go away,and it has indeed gone away in me.

    so my gut feeling is i have malaria or lyme parasites in me.

    and im mentioning it at my hospital appointment on may 20th.

    ill let you know what happens in the future.

    kind regards



    ive got my small dog on two tea spoon fulls of pumpkin seeds,he likes them.

    for a large dog,id give it two table spoons of the pumpkin seeds.

    my small dog is having a small amount of quaker oats porridge,for cholesterol.he likes that.

    doesnt like cran juice though,but im working on it,not forcing him to drink it.

    he seems well.doesnt now have anxiety when he sees fling things.he just seems not so stiff in his back legs,and is sleeping alot,,bless him.
    [This Message was Edited on 05/10/2008]
  5. Junegal

    Junegal New Member

    I'm starting to explore the Lyme diagnosis myself. I've been diagnosed with CFS but I feel better on antibiotics always and it just doesn't "fit" for me with the whole EBV/HHV6 part. They keep telling me that antibiotics boost my immune system and that is why but I feel that I have an infection going on and am starting to question the whole CFS thing because of this. I am definintely getting worse and feel like life is passing me by and I can't live like this anymore. I've only been sick for 1.5 years, which I know compared to most people isn't very long, but for me, it seems like I can't remember feeling normal. I need to have my life back.

    I am searching for a Lyme disease specialist right now so I can insist on the on the Western Blot. I don't think I can rest until I know for sure, because if I do indeed have Lyme, there could be hope of getting well. I don't take anything lying down, I'll tell you that! As sick as I am right now, I will not go down without a fight.

    I don't have any answers to your Lyme questions, but from what I have been reading over the past few weeks, it surely seems to me that CFS and Lyme symptoms are very similiar.

    Hopefully you'll get some good answers from the people on this board. Good luck!

  6. highcotton

    highcotton New Member

    same story here. Diagnosed with CFIDS for many years. Whenever i took abx i felt better. My CFIDS specialist was clueless about LYme and co's.

    and yes, post-exertional malaise is a symptom, unfortunately of Lyme.

    Glad you came to this board! good luck in your journey to wellness.

  7. victoria

    victoria New Member

    in another post by Kathy,

    you might want to attend a screening of the documentary, "Under Our Skin".

    Or, you can look at the trailers.
    Here's a link: http://www.youtube.com/watch?v=sxWgS0XLVqw
  8. bullbustin

    bullbustin New Member

    www.ilads.org, www.lymepa.org, wwwllymediseaseassociation.org and www.canlyme.com are some good sites for lyme information. Lyme disease association has some free online videos you can watch.

    Here is the best lyme disease guidelines I've found http://www.ilads.org/burrascano_0905.html

    Also the www.lymepa.org has a good, easily understandable guidelines that you can download.

    Best thing I've found for chronic lyme disease is to find a LLMD. ie Lyme literate MD They are usually members of ILADS ie International Lyme and Associated Disease Society members and are up on the latest treatments.

  9. bullbustin

    bullbustin New Member

    You need to find a LLMD Lyme Literate MD. As far as I know there are only two or three labs that specialize in diagnosing tick and other insect caused diseases such as lyme.
    You mentioned Igenex which I think is the best. Then there is StonyBrook on Long Island and then MDL in NJ.

    I believe www.ilads.org has a doctor find and so does www.lymediseaseassociation.org. Try finding an LLMD in your state

    Did your doctor do a Western Blot test looking at all the bands as well as have you fill out a quuistionairre of your symptoms? I was so sick I had to be flown to Tampa, FL back in June 2006. Just because you have a negative lyme test does not mean you do not have lyme disease. Lyme is called the great immitator disease and is in the same family as syphilis only lyme has more in it's Genome. Even if you don't have an EM rash it still doesn't mean you don't have lyme disease. The percentages are very high of missed lyme disease unless you use Igenex and have a LLMD. I read different percentages of lyme cases missed using your health plan lab such as Lab Corp or Quest. Most labs don't test for all the bands, etc.

    I was first diagnosed with CEBV, then CFS, fibromyalgia and Reiter's Syndrome and then Lyme. I responded pretty good to IV antibiotics, but got a C diff infection twice and had a blood clot in my PIC line so had to stop IV antibiotics. Then my primary care working with my LLMD in Tampa would not order the IV therapy so I've gotten worse. Cannot take oral antibiotics.

    When you are on antibiotics do you get a herxheimer reaction? What antibiotics have you been on? YOu will see in Dr. B's guidelines that some antibiotics work much better than

    What state are you located in? Lyme is now in all 50 states or so I've read. It's really bad in the northeast and the northern california area, but I'm in Florida and got lyme disease here.

    Some days are better than others, but you have to be careful and not overdo on a good day.

    Did you ever have any type of rash?

    Hope this helps you and others.
  10. loto

    loto Member

    thank you so much for posting this, bunny. it has answered many questions for me, and has convinced me to have my doctor order the tests for me. I have many of these symptoms you've listed, and have felt Fibromyalgia is not the only thing wrong with me.
  11. Nanie46

    Nanie46 Moderator


    This booklet about lyme by lymepa.org has a really good, detailed symptom checklist in the back...plus alot of really good basic info.......

  12. jarjar

    jarjar New Member

    Dr. Cheny is on record saying the symptoms of Lyme and CFS are identical. I've also read where many LLMD's have said the majority of CFS/FM test positive for Lyme by a good lab.
    Not CDC positive but they test positive on the bands they know are important to look for in
    Lyme Disease.
  13. victoria

    victoria New Member

    This one in particular is really good, as it shows what they look like from nymph stage to adult to bloated adult. I have pulled so many off my dogs over the years before I knew about Lyme...


    Also an excellent site on google for seeing what the deer ticks look like:


    (sorry I don't know how to do tiny urls)

    Lyme rash photo references:







  14. nancycleek

    nancycleek New Member

    symptoms are numerous and vary from person to person. my symptoms began with flu symptoms, sore throats, migrains, fatigue, numbness, tingling, rashes, muscle stiffness and soreness, eye floaters, nausea, stomache pain, swollen joints, pain in bones like ribs, low blood pressure, muscle weakness, blurry vission, gout, tinnitis, jaw and teeth pain, swollen eyes, sometimes droop, night sweats, insomnia, vertigo, light sensitivity, sound sensitivy, auditory sounds like popping or gunshot, hallucinations, mood swings,rage,memory issues pain in feet, stiffness in neck, pelvic/testicular pain, lactation, sexuler disfunction, chest pain, shortness of breath, poor balance, tremor muscle twitches confusion, anxiety, loss of appetite, trouble word-finding, eye pain, frequent urination, paranoia, hair loss, difficulty swallowing, sometimes people sound like they,re talking gibberish, excessive sweating. although uncommon, I developed extreme heat sensitivity. Eye pain, difficulty reading/following a story. sometimes fingers curl in. untill CDC guidlines are changed it's crucial to see lyme literate doctor and tested for coinfections. lyme is a clinical diagnosis and usually takes 1-3 years of treatment. my Dr. is in Grinnel Iowa, (Dr, J. Piccirillo) please contact Judy Weeg, President of the lyme disease coalition www.Lymeinfolduc.org or LymeAwareness@lduc.org Lyme is often misdiagnosed as chronic pain, chronic fatigue, MS, parkisons,als, irritable bowel
  15. scook12

    scook12 New Member

    I am new to this site, so hopefully you have found a Lyme specialist near you already. There are a few good ones that I know about in different parts of the country. My doctor is in Missouri. Let me know if you are still looking.
  16. Nanie46

    Nanie46 Moderator

    The "Bible" of Lyme Treatment written by a Lyme Literate MD...symptom checklist pages 9-11....info about common coinfections like Bartonella, Babesia, Ehrlichia, etc on pages 22-27.....info on testing on page 7....info on western blots (Igenex tests for ALL bands) on page 7....


    Great basic explanations about Lyme and coinfections and comprehensive symptom list:


    Website of ILADS, the organization that Lyme literate MD's belong to. Contains lots of great information:


    Website of California Lyme Disease Association. Contains lots of great info about lyme and coinfections, archived issues of Lyme Times, etc:


    Another important explanation of Western blots for lyme from a Lyme literate MD:


    Great article about the Two Standards of Care....IDSA vs ILADS:


    27 reasons why a Lyme test can be negative, but you really have Lyme:


    Website of Igenex lab in CA, a tick borne disease specialty lab, most common test is the Western blot IgG and IgM, test #188 and #189.

    Call and order a free test kit with prepaid fedex label. Have blood drawn at a local lab that can prepare the blood and fedex it the same day.

    Have blood drawn on a Monday or Tuesday morning so that blood will reach Igenex lab via 2 day fedex before the end of the week.

    Should not be taking immune supressing drugs when tested.....any questions call Igenex customer service:


    Great fast moving board for people with lyme and other tick borne diseases:

    www.lymenet.org.....click on flash discussion....sign up for free.....click on Seeking a Doctor board....click on Post New Topic...and create a post asking for a LLMD in your state....to move from one board to the other click on Forum Home or Questions and Discussion...that takes you to the Flash Discussion page where you can click on the Medical Questions Board, General Support Board, Activism, etc.

    Lyme Disease: Considerations in Diagnosis and Management (A great powerpoint presentation with lots of important info):


    "When To Suspect Lyme"...an important and very eye-opening essay that can help you recognize the varied symptoms of lyme disease:


    "The Need for Clinical Judgement in the Diagnosis and Treatment of Lyme Disease":


    Lyme Disease Association, Inc:


    "Get it Right, Treat the Bite":


    Bartonella is a common coinfection of Lyme, and can also be transmitted by cats and fleas. This article discusses Bartonella Rage and Abuse and shows examples of possible personality types of people with Bartonella:


    "Saving Our Children: Evaluation and Management of Pediatric Tick Borne Diseases":


    Great lyme disease articles written by a Dr who has Lyme:


    "Turn the Corner Foundation" is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases:


    "Under Our Skin", is a wonderful documentary about the hidden epidemic of Lyme disease. It is being shown on PBS, Netflix, available on Amazon.com, etc.

  17. himes

    himes New Member

    my 7 yr old was just told he had lymes .i went to web md to look up some symptoms it all deepends on what stage your in from what i could read.i can tell you what im dealing with for him.but each and everyone could be diffrent and im not no medical doctor nor do i really no nmuch about it yet myself.the main symptom i can tell you is a rash that looks like your having a allergic reaction they say it looks like a bullseye but i didnt think so to me it looks like a allergic reaction to something it comes and goes.the other thing would be a fever that also comes and goes my son has extreme nausea there hasnt been a day thats went by that he hasnt complained about feeling sick i know it makes ya feel tired and that your body aches all over.his heart feels like its racing at times or if it skips a beat it can make yo feel very weak and theres so many more i hope you find that sight very helpfull and i would wait a little bit and request the test again i found a tic behind my childs right ear it looked so small i thought for sure i had caught it in time his face started swelling shortly after it just looked real puffy on that side and he developed a rash on that side of his face but not behind his ear i did take him for blood work and nuthing showed up at that time now here we are several months latter with horrable symtoms he cant even swallow his own saliva and he was tested positive they say when you have it that it shows up right away but my childs proof that it did not..good luck i hope you get feeling better soon and find out whats wrong=)

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