Could you have Lyme Disease?

Discussion in 'Fibromyalgia Main Forum' started by ticktalk, Mar 5, 2003.

  1. ticktalk

    ticktalk New Member

    I have Lyme Disease, and I correspond with people from all over who have Lyme Disease and other tickborne illnesses. A large percentage of them were first diagnosed with Fibromyalgia and/or Chronic Fatigue Syndrome. They suffered for years and then found out that they have Lyme Disease. These diseases, like Fibromyalgia and Chronic Fatigue Syndrome, are extremely debilitating on many levels. Prompt and proper treatment greatly reduces the possibility of long-term complications; however, many people go undiagnosed for long periods of time and the disease becomes very chronic. I am hoping this post may help.

    Lyme Disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the second fastest-growing infectious disease in the United States after AIDS. This is very significant, yet little is being done to educate people about its seriousness and prevalence. Many people who are bitten do not know it because ticks are tiny and they inject a numbing agent so you cannot feel them. Lyme Disease is difficult to diagnose because no test is completely reliable. As a result, it is grossly underreported. Many people have it and do not know it. Often, doctors falsely believe that Lyme exists only in the northeast, when in fact it has been reported in every state except Montana.

    Below is a Lyme Disease symptom list:

    SYMPTOM CHECK LIST

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol


    Ticks can also transmit several serious co-infections:

    --Babesiosis is similar to malaria. It is caused by a protozoa that invades, infects and kills the red blood cells. Symptoms include chills, sweats, fatigue, headache, weakness, muscle aches and pains, dizziness and heart palpitations.

    --Ehrlichiosis is an infection caused by a rickettsiae (a bacterial parasite) that invades and infects the white blood cells. There are two types of Ehrlichiosis--HME and HGE. Symptoms include fever, malaise, headaches, chills, sweating, severe muscle aches and pains, nonproductive cough, abdominal pain, nausea, vomiting, and diarrhea.

    --Bartonella is also known as cat scratch fever and has recently been attributed to tick transmission

    Many people who have Lyme Disease have one or more of the co-infections. These illnesses are treatable with high-dose antibiotics. It is very important to see a knowledgeable doctor because many doctors do not understand these illnesses and treat them with outdated protocols. A bullseye rash is a definite sign of Lyme Disease, but only about 50% of people who have Lyme ever get a rash. If you get a rash, it is a good idea to photograph it for documentation. Place something near it, like a coin or ruler, before photographing to give it size definition. That way you have evidence of it if needed later. Here are a couple of sites where you can see some, not all, examples of Lyme rashes:
    http://www.lyme.org/gallery/rashes.html
    http://www.dis.strath.ac.uk/vie/LymeEU/images_medical.html


    The best defense against Lyme Disease and other tick-borne infections is prevention and education. There is a wonderful tick repellent you can buy for your clothing at Wal-Mart in the sporting goods section for about $5.00. It is called Repel Perma One. You spray your clothes and let them dry at least 2 hours before wearing (read the label entirely). If a tick even walks on them, it will die instantly. This is for your clothing only. It will last for up to two weeks or through five washings. You will still need a repellant for your skin. Research to determine which products are safe and best for children.

    Wearing light-colored clothing allows ticks to be seen easier. Realize that ticks can be as small as the period at the end of this sentence. Long sleeve shirts and long pants with clothes tucked in properly, reduce the amount of skin exposed. Also wear a hat. When coming inside after outdoor activity, remove your clothes promptly and wash and dry them at the hottest temperatures possible. Check for ticks on yourself, your children, and your pets--including under arms, behind knees, behind ears, on scalp, bellybutton etc.

    If you find a tick, the only safe way to remove it is with tweezers only. Bring tweezers as close to where it is attached to skin as possible, and grasp its mouthparts. Pull the tick straight back. Do not burn it with a match, do not put Vaseline or alcohol on it, and do not remove it with your fingers. Any of these methods will increase your risk of infection. Save it in a Ziploc bag, it can be tested for disease.

    I highly recommend the book "Everything You Need To Know About Lyme Disease" by Karen Vanderhoof-Forschner. It gives a lot of information on the disease, symptoms, treatments, tick identification and prevention, managing your property etc. Most bookstores can order it if it is not in stock or you can buy it on-line.

  2. sofy

    sofy New Member

    Many of us have done the spinal tap to rule this out. I'm in lyme country and that was the first thing we checked for.
  3. ticktalk

    ticktalk New Member

    Hi Sofy. A spinal tap in an inconclusive test for Lyme Disease.
  4. kerrymygirl

    kerrymygirl New Member

    Yrs. ago I was in the hospital for 10 days for viral meningitis. Five docs were scrathing their heads at my age why I had this. That was the beginning of the end so to speak. We were on vacation in camping area in fl. I came home with numerous bites,I swell alot from a mosquito bite. Bugs love me. Anyway my daughter and i had a deer come up to us which we responded to. She ran a high temp for 2 days and then was fine. I was an athlete and tackled anything big or small. I slowly went down hill, 10 yrs later a lyme test was run and came out positive. I have had 3 positive lyme tests and a couple negative. Since I had the negative no doc has cared to address this and I do not have anyone on my coverage now who does. There is only 1 or 2 docs here that know about it and when I was in a research program for fm this doc said she is doing alot of research and said from all my symptoms,history,she has no doubt I do have lyme. Yet the treatment mentioned would be atleast 2 yrs. I.v. antibiotic,very expensive and I have no income now since I have been so ill. Today I shook in chills most of day and alot of pain and fatigue. My docs feel it is fm and I test all bands for epstein barr and have positive and negative ana`s. My gut still feels It all started with lyme.No one will listen of my docs I have to go to.I am not sure about the long term antibiotics do to my research and the jury still seems to be out on that since the bacterium hides so deeply in tissue. Plus long term antibiotics open you up for all kinds of other infections on an already compromised immune system. So I don`t know how hard to push it since many have not been cured after antibiotics who have advanced lyme. Where do you live, no bio. Appreciate your post I have all but 3 symptoms which I had already read but is a helpful reminder,even though so much doe`s cross over with fm,which I do know I have now. Also alot of docs in fl. do not believe there are any ticks here even though they were brought into this clinic here where research was being done,found on beach. I did not live here then was vacationing. They had a program on our news about it and this one doc still said it is totally rediculous. Did they never here about transpotation via car or animal with all the visitors we get,,,,Duh.... Tell me alittle about yourself, treatment and how you are doing,please.Thanks!!!
  5. healing

    healing New Member

    what IS the definitive test for Lyme? I had a spinal tap for other reasons (mainly to rule out MS). Have had countless blood/urine tests for Lyme; one set of blood tests a few years ago came back inconclusive, but that was well after the onset of my symptoms, and tests before and after were fully negative. My rheum. has now moved on to other things (strep, mainly) but I can't help wondering about Lyme.
  6. JaciBart

    JaciBart Member

    I have a question, what kind of test is accurate??

    I have about 99% of those symptoms also.

    Jaci
  7. Tincup

    Tincup New Member

    Hi..

    I have come to visit with you all and hope that you might take a minute to visit me once you have read this information.

    This looks like such a nice site.. very much like the one where you can find me most hours of the day. We have a bunch of really great folks at the Lyme Net site... and we welcome you.

    Ms. Tick talk who originally posted has been a big help to folks and she (if this is who I think it is).. as well as I.. are concerned for many of you folks. Just to give you some ideas...

    A comment was made by... whoops.. they don't give me the names while I type.. so please bare with me...

    Someone said...

    "Many of us have done the spinal tap to rule this out. I'm in lyme country and that was the first thing we checked for."

    Just so you know... Lyme tests are famous for missing MANY folks. That is a huge problem.. especially years ago.. and especially if the tests were done in standard labs. Truth is... less than 20 percent of people who actually have Lyme test positive for it in spinal fluid. It is very common for Lyme to be missed in these tests. There are over 300 different strains that have been identified to date.. and only a few that even show up on "standard lab tests"... As a matter of fact... it is NOT recommended that a spinal tap even be done anymore because even the CDC states.. Lyme is a clinical diagnosis and negative tests are NOT to be used to rule out Lyme. Proper tests are needed... anytime you get a cheap test... you give the doctors a reason NOT to think Lyme and use that against you. I am sorry to say tis so.. but it happens all the time. The problem is so bad that we created an imaginary "alligator pit" where we toss the doctors in who don't know what they are doing and misdiagnose us... And it is so full the gators are getting indigestion! ~smile~

    Another poster wrote...

    "Not in Lyme country but visited there around the time I got sick, panning for gold in a creek bed in Northern Cal. My doctor said my test indicated he thought I had been exposed at one time. Never was treated though. See but I also was positive for the parvovirus and dont know when I might have had that either."

    Oh my.. you sound just like my cousin... and about a zillion others who have gotten sick... and the disease was dismissed and never addressed or futher investigated or treated. Shame on the doctors. They have had 25 years to learn this stuff. By the way.. a good percentage... (estimates run 25-80 percent) of folks with Lyme have co-infections.. such as parvo virus. I would LOVE to see you get proper tests by a doctor who works with Lyme patients. An infectious disease is an infectious disease. Until it is properly treated.. it won't go away.. and you will continue to get worse. I will personally do what I can to help you take a step in the right direction... and either rule out Lyme... or confirm it. Please... at least make a visit to the Lyme Net site below... We all care about you.

    Another post stated...

    "Yrs. ago I was in the hospital for 10 days for viral meningitis. Five docs were scrathing their heads at my age why I had this."

    Yes.. it takes an average of 12 doctors before a Lyme patient gets a proper diagnosis. I am sorry this happens...

    You said.. "That was the beginning of the end so to speak. We were on vacation in camping area in fl."

    Ahhhhh... major give away!

    "I came home with numerous bites,I swell alot from a mosquito bite. Bugs love me."

    I sound like a "smarty pants".. but just so you know... here is a quote from an article I did a few years ago...

    The American Dog Tick, the Lonestar Tick, and the Deer Tick, are just a few of at least 9 different species
    of ticks that carry the Lyme Disease spirochete. It is also found in at least 6 species of mosquitoes, 13
    species of mites, 15 species of flies, 2 species of fleas, and numerous wild and domestic mammals including
    rabbits, rodents, and birds. Once transmitted to humans, the spirochete (over 300 DIFFERENT strains have
    been identified to date) causes damage to it?s host by spreading to various parts of the body. Other insects
    and modes of transmission are currently being researched. At this time, Lyme disease is not considered to be
    sexually transmitted, only because there has not been a ?documented case?. It may be wise to take
    precautions. The spirochetes that cause Lyme Disease have been found in breast milk, the uterus, semen,
    urine, blood, the cervix, tears, brain, and other body fluids and tissues.

    You said.. "Anyway my daughter and i had a deer come up to us which we responded to. She ran a high temp for 2 days and then was fine. I was an athlete and tackled anything big or small. I slowly went down hill, 10 yrs later a lyme test was run and came out positive. I have had 3 positive lyme tests and a couple negative. Since I had the negative no doc has cared to address this and I do not have anyone on my coverage now who does. There is only 1 or 2 docs here that know about it and when I was in a research program for fm this doc said she is doing alot of research and said from all my symptoms,history,she has no doubt I do have lyme. Yet the treatment mentioned would be atleast 2 yrs. I.v. antibiotic,very expensive and I have no income now since I have been so ill. Today I shook in chills most of day and alot of pain and fatigue. My docs feel it is fm and I test all bands for epstein barr and have positive and negative ana`s. My gut still feels It all started with lyme.No one will listen of my docs I have to go to.I am not sure about the long term antibiotics do to my research and the jury still seems to be out on that since the bacterium hides so deeply in tissue. Plus long term antibiotics open you up for all kinds of other infections on an already compromised immune system. So I don`t know how hard to push it since many have not been cured after antibiotics who have advanced lyme. Where do you live, no bio. Appreciate your post I have all but 3 symptoms which I had already read but is a helpful reminder,even though so much doe`s cross over with fm,which I do know I have now. Also alot of docs in fl. do not believe there are any ticks here even though they were brought into this clinic here where research was being done,found on beach. I did not live here then was vacationing. They had a program on our news about it and this one doc still said it is totally rediculous. Did they never here about transpotation via car or animal with all the visitors we get,,,,Duh.... Tell me alittle about yourself, treatment and how you are doing,please.Thanks!!!"

    Oh my...

    I am from Florida. Your story is so familiar. I would have surely died had I stayed there. I had to go north to find help. Two relatives and friends of mine in Florida passed away from untreated Lyme and co-infections and my heart still breaks. I had Lyme, Rocky Mountain Spotted fever, Babesia, and Bartonella... to name a few. I looked for years to get help.. and I MUST say.. the docs there were HORRIBLE. Your story is SO typical. It may help to know.. most doctors are not using the expensive IVs to treat anymore. Orals are normally used at first. Your little one may have contracted babesia.. and by your symptoms.. you may have also? This may affect you both for years... but the good news is.. it can be treated and you can feel better. I was misdiagnosed with fibro on many ocassions... and found the Mayo Clinic.. and the doctors trained there were some of the worst when it came to Lyme. They may be good with some things.. but they missed all of these diseases.. not just with me.. but with many others.

    By the way... we have done polls at Lyme Net on how many with Lyme have high Ebstein Barr readings.. and up and down ANA readings. Nearly ALL Lyme folks have elevated EB readings. The researchers are finding that the virus is activated by the spirochetes.

    Fibro affects so many of us who have Lyme... to us is is ONE of the manifestations resulting from the infectious diseases. We know Fibro... OUCH! I hurt for you all.

    There was a big chronic Lyme study just done... and the results.. and the doctors who did it.. reported on fibro and cfs patients and how Lyme caused this stuff to happen. It is by Dr. Sam Donta.. I believe from Boston area?? I will pull that report if anyone cares to see it..

    If you would at least come visit us... I will do everything in my power to try and help you... and we have contact people in Florida.. and many other areas... all volunteers.. who help folks in your situation get properly tested and informed. You may have seen an article I did for the St. Pete Times several years ago on Lyme? I TRIED to help with education down there.. but it is tuff. There are some good folks still there who are kicking butt right now.. trying to get the word out... bless their hearts.

    I have enough literature that I could keep you busy for years reading it... but if you are real nice when you visit.. I won't make you read it all... hehehe.. And when you come visit... ask any question you want... we will try to help. Please visit just so I will feel beter? I was misdiagnosed for years... and I am now disabled from so many exposures to ticks. And this is what I do now as a volunteer... I try to help others so they won't go through what I went through.

    I would love to hang out with you all.. you seem so nice.. but I stay too busy where I am and am spread so thin. I am only making this one ditch effort away from Lyme Net to see if I can help anyone here.

    Here is one site that you can check.. with basic information. Please do. And say howdy to me...Tincup... when you come by... ok?

    Main site.. Flash Discussions.. Medical or General is a good starting point...

    http://flash.lymenet.org/scripts/Ultimate.cgi

    For links and fibro/Lyme information...

    http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

    Thanks for listening... I hope.. if you visit or not... that you have many good days. Take care of you.

  8. ticktalk

    ticktalk New Member

    Hi everyone--I would like to respond to your posts.

    Sunny, do you know which test was run? I do not know how a test could show past exposure. Do you have a copy of the result?

    Kerrymygirl, Lyme can cause meningitis and encephalitis. It is definitely in FL. You have positive tests and you should be treated. Treatment for Lyme varies because it affects people so differently. The chills you describe could be from the co-infection Babesiosis. You should be evaluated by a Lyme knowledgeable doctor. There are a couple of good doctors in FL. I don't know if I can post my email address here, but anyone who would like a list of resources for their area could email me. I was told there is no Lyme where I live and that I could not have it. Several months later when I was much sicker, I went to a knowledgeable doctor. I found out that I have Lyme, Babesiosis, and both types of Ehrlichiosis. I am currently being treated for the co-infections. Many Lyme doctors believe they need to be treated before the Lyme. These illnesses can be very debilitating. No one should have to suffer like this when something can be done. If you believe you could have Lyme, please see a knowledgeable doctor. I hate to think where I would be if I would have listened to the one who told me I could not have Lyme. Yes ticks do cross state lines! Lyme is the second fastest growing infectious disease in the US after AIDS, yet nothing is being done to educate the medical community.

    Healing and Jaci, unfortunately there is no completely accurate test for Lyme, but some are better than others. From what I understand the titer is the least reliable (many false negatives) and the one most doctors will run first. Other tests include the Western Blot, PCR, and urine tests. Many people who have Lyme do not test positive. Even the CDC says a negative test does not rule out Lyme. If other things are ruled out and the symptoms fit, it should definitely be considered a possibility. Lyme is caused by a bacteria like so many other illnesses. I suggest getting copies of your test results. When Lyme is a possibility it is important to be evaluated by a Lyme knowledgeable doctor.

    Tincup--lots of great information!

    I deeply empathize with those who are chronically ill. I am on a mission to educate people about these illnesses so if they do have them they can get the help they need. Before I was diagnosed, I had no idea these diseases existed. Had I been aware, I would have gotten the help I needed sooner. Knowledge is power. I appreciate all of your welcomes and interest!

  9. kerrymygirl

    kerrymygirl New Member

    I have been told so many things from docs that I really did not know what to beieve. Yet to this day my gut said Lyme started my spiral. I was not even home 4 wks. when I was rushed to surgery for bleeding,vaginal and had numerous procedures done besides hysterectomy. This was all within a mo. or so from vacation and all my bites. No one even heard much about lyme back then had doc from Emory in. No one knew what happenned to me with this meningitis thing. I will go to your sight and discuss further. No one has cared to listen so far. My brother asked his doc in Cleveland and he told him no such thing as advanced lyme. I had one doc tell me Once positive Lyme always. Then he totally dismissed it when I told him I was in fl. at St. Andrews Park. He said no lyme here. He had horse ranch in Ocala. When I was leaving I said hope you are right,yet I would be carful when you go home. I know I do have fm. diagnosed worse case she had seen and she specialized in fm. and I worked there,helping do work ups. They loose count I have so many trigger points. I have exhausted finanaces in last 10 yrs.,my insurance is here in fl only with few choices.I also have alot of spinal injury from car accidents and all my rough sports. Also raynauds and last time they opened me up,hand surg. not carpel tunnel I was told he never saw tissue quite like mine. Do you know of dr.Whittikar? She has tried to break through the lyme myth here and is constantly shut off. It almost cost her everything, and she has degree`s beyond degree`s. She also has lyme. I did do doxy at one pt. Became quite ill prob. from herx.Now I have been so ill can barely leave. I live alone so it is difficult, no other source of income or support. So, I thank you so much and will go to web site. You were so very kind to take the time, I have felt quite alone in this situation. I also called a guy I met who had rocky mountain,and now has severe fibro and recently had to stop working and is so upset for him and his wife. Hope to get with you more about this...Hugs to you....
  10. kerrymygirl

    kerrymygirl New Member

    Yes, this is one of the problems with the lyme tests. There are only a few clinics that know what to look for. At our clinic one day the critter was spotted in blood exam on our own testing and the ones we felt were positive when sent to lab in calif. and not local lab came out definite positive the ones we did not see in our lab came out negative. This was sort of a fluke that we dicovered it. Only thing is it cost $800 to $1,000 for total examinaton in their lab. From everything I have seen & read if not treated in early stage, advanced lyme with long term antibiotics has not always been the cure. One thing we did find out more people had lyme and fm then ever thought about. When some labs were on the cutting edge all of a sudden were closed only to find out this had to do with politics. It is along story so won`t bore you but very sad. This 1 doc that had been working with a child and so close to get some help,gratis all of a sudden there funding was cut and it was this mom`s last hope after so many yrs. I hope he made it I know children have died while waiting. Pretty sad about our system sometimes,most of us know that story here. How are you doing now? Hugs to all who are suffering!!!
  11. Kay2

    Kay2 New Member

    Wow I am also in ticks ville. 2 yrs ago I ended up IN E.R. after a week of not being able to hardly get out of bed (which isn't like me) I had a rash all over and it felt like my head was going to explode. I was freezing. Was summer at the time also. I hurt all over and of course I was totally drained. The ER doctor said it looked like rocky mountain spotted fever, so I did a follow up the next Monday, and My doctor checked me for lymes and it was negative. Since then, I have gotton a rash twice and very sick. I do have fibro & cfs Ebv is way up. I would like to have more info on this. My addy is on my bio. Thank you Linda
  12. kerrymygirl

    kerrymygirl New Member

    BUMP, not sure if I am doing this corresctly but do to tests on lyme not being reliable people need to look back at their history. Lyme is growing almost as fast as Aids,and is being covered up. Politics,some do to fear of hurting tourism etc. There are only afew truly reliable clinics out there to do the testing. Symptoms alot like fm. or it ends up in fm. epstein barr. etc. Thanks concerned about your health!!!! Sorry I am quite ill today... BUMP
  13. ticktalk

    ticktalk New Member

    Kerrymygirl, you are right. People need to be educated about these diseases. Many people do not even know when they are bitten by a tick.

    I hope you feel better soon.
  14. Debgene56

    Debgene56 New Member

    Glad I found this post. This past Laborday weekend, I was in the wilds of the WhiteMountains in New Hampshire. I ended up with a bullseye rash on my neck. About the size of a dime, bloodred circle with a lighter center. Burned if I touched it. My doc said it was definately from a tick bite and did blood test, another one two weeks later. They were normal. I have fm and since have been very ill feeling worse and worse. This past weekend I started with dizziness and a tightpressure head when I stand, get sick to my stomache and my legs feel funny and weak. Goes away when I lay down. Will be tested for dysautonomia and have a severe systemic candida infection. Could you please give me some advice. Also my doc sends the labs out to some small lab, would I be better off a major hospital lab? Thank you for anything you can tell me. Hugs to you all, Deb
  15. Debgene56

    Debgene56 New Member

    Also from Ma and have pulled two very tiny ticks off of me this past summer. Also have chills all the time can't get warm, run a lowgrade temp every day. Feel like I am dying from the inside out. Joint pain everywhere now.[This Message was Edited on 03/07/2003]
  16. dlizard

    dlizard New Member

    I have been tested and am presently awaiting results for lyme for the first time int he 20+ yrs that I have been ill.... I went to lyme net way before I saw this post but during the past week.... and I've decided thta I thik Fibro is a SYMPTOM not a syndrome... and the ACR ( the rheumies) are doing all of us a dis-service by not routinely checking us for stuff like this. I presented once again to my newest primary with one of my rashes and he said... lordie girl.. that looks like lyme to me... I said HUH? never once has anyone even thought about this for me... how can this be? My pyschiatrist has been most instrumental in helping me find a doctor willing to at least look .... cause I have all the LATE symptoms of lyme.... o lovely~... so thanks for the time you took to post tictalk... funny how I told them all about the "spider?" bite in college that looked just like a "bullseye" that I saw pictured on your webpage.... things that make ya go "MMMMMmmmmmmmm".
  17. ticktalk

    ticktalk New Member

    Debgene56, a bullseye rash is a definite sign of Lyme Disease. No test is completely reliable and most people test negative early on before the body has built up antibodies. From what I understand, the rash alone is basis for a diagnosis.

    I highly recommend that you get evaluated by a Lyme knowledgeable doctor. Many of your symptoms--chills, fever, dizziness, and muscle weakness could be from the co-infection Babesiosis. I am currently being treated for this. It is important to use a good lab for testing. IgeneX in CA is one of the best Lyme labs in the country. Their contact information is http://www.igenex.com/ or 800-832-3200.

    My email address is posted on my profile page, so anyone who would like more information can contact me.


    [This Message was Edited on 03/07/2003]
  18. ticktalk

    ticktalk New Member

    Thank you for your thank you! I do not understand why Lyme is not considered when other things have been ruled out. It is a good idea to get photos of your rashes so you have them for documentation. Place a coin or ruler next to them for size definition. It is great that your primary doctor recognized the rash. A bullseye rash is definitely Lyme. When will you get your test results? Do you know if you were tested for the co-infections?

    If you would like some resources on Lyme, feel free to email me.

  19. contentedpearl

    contentedpearl New Member

    For the doctors who are experienced with Lyme Disease, the diagnosis is based primarily on clinical symptoms and not on diagnostic tests. If you simply go by the clinical symptoms of Lyme to make a diagnosis, many, many people who think they have fibromyalgia could have Lyme disease, because if you look at the symptoms people with fibromyalgia have, they are almost identical to many Lyme symptoms.
    Here are a bunch of links to Lyme disease information that Tincup posted on Lymenet today:
    Looking for a doctor? Suggestions...

    To find doctors:

    Go to the seeking a doctor section here at Lyme Net and post a message.. or...

    If you are looking for Lyme Literate Medical Doctors (LLMD), perhaps write to the
    doctor referral person at the Lyme Disease Association.

    She is Kim Uffleman and her email is:

    kimuffleman@hotmail.com

    Please let Kim know where you are located (town, county, state). She will make every
    effort to reply with up to 4 LLMD's that are as close as possible.

    The LDA also has a toll free line (1-888-366-6611) to request LLMD referral info.

    Please put your states name in the subject line of the email.
    *******************************************
    OR.. if that doesn't work.. post in the Medical Section and ask for a doctor in your area.


    [This message has been edited by Tincup (edited 11 July 2002).]

    IP: Logged

    Tincup
    Frequent Contributor
    Posts: 9347
    From: THE MOON
    Registered: Oct 2000
    posted 24 June 2002 13:36
    --------------------------------------------------------------------------------
    Welcome to Lyme Net!
    Below are links to some basic information about Lyme Disease and other tick borne infections. We have also posted some articles concerning chronic Lyme disease and CFS/Fibromyalgia being mistaken for Lyme Disease.. please see posts below for those articles.

    Please let us know if you have any questions or we can help.

    We only post doctors names on the board if we have their permission.

    Hope you are on the road to recovery soon.

    Dr. Joseph Burrascano Treatment Guidelines 2000:
    http://library.lymenet.org/

    Symptoms Information:

    Cheryl's Lyme Info (Lyme files):
    http://www.lymeinfo.net/lymefiles.html


    When to Suspect Lyme Disease:
    http://cassia.org/essay.htm


    Lyme Time You Knew:

    http://flash.lymenet.org/ubb/Forum1/HTML/005804.html


    Lyme Disease Audio Network:
    http://www.lymediseaseaudio.com/

    Cheryl?s Lyme Site:
    http://www.lymeinfo.net

    Neurotoxins:
    http://www.chronicneurotoxins.com/lymedisease.cfm
    http://flash.lymenet.org/ubb/Forum1/HTML/004669.html

    Lyme Misdiagnosed as:
    http://www.geocities.com/lymeart3/lyme-misdiagnosed-as.html


    IGeneX Lab (Lyme, Babesia, Ehrlichia, Bartonella testing):
    http://www.igenex.com/


    Bowen Lab (Babesia, Lyme testing):
    http://www.bowen.org/Bowen_Borrelia_results.html


    MDL Lab (Lyme, Babesia, Ehrlichia, Bartonella):
    http://flash.lymenet.org/ubb/Forum3/HTML/001501.html


    False negative Lyme tests:

    http://www.ilads.org/position.htm

    Western Blot Bands:
    http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt


    Various strains of Bb:
    http://www.pasteur.fr/recherche/borrelia/Borreliaspecies.html


    Lyme Disease: The Sensible Pursuit of Answers:

    http://www.x-l.net/Lyme/li.htm


    The Complexities of Lyme Disease:
    http://www.lymealliance.org/research/grier/grier_1.php

    Persistence or relapse of Lyme disease:
    http://www.geocities.com/HotSprings/Oasis/6455/persistence-links.html
    http://www.geocities.com/HotSprings/Oasis/6455/persistence-special-abstracts.html

    Lyme Disease Page- Matthew Goss
    (Info on medications, etc)
    http://www.matthewgoss.org/lyme.html

    Lyme and Fibromyalgia:
    http://www.geocities.com/lymeart3/fms-index.html

    Lyme and Lupus:
    http://www.geocities.com/lymeart3/lupus-index.html

    Lyme and MS:
    http://www.geocities.com/lymeart3/ms-index.html

    Lyme/Heart:
    http://www.geocities.com/lymeart3/heart-links.html

    Gastrointestinal:
    http://flash.lymenet.org/ubb/Forum1/HTML/001560.html

    Herxing:
    http://flash.lymenet.org/ubb/Forum3/HTML/000247.html
    http://www.x-l.net/Lyme/abstracts/herx/herx.collection.html
    http://flash.lymenet.org/ubb/Forum1/HTML/000638.html


    Neuropsychiatric:
    http://x-l.net/Lyme/Fallon95.htm
    http://www.mentalhealthandillness.com/tnaold.html
    http://www.mentalhealthandillness.com/lymeframes.html


    Sexual transmission:
    http://flash.lymenet.org/ubb/Forum1/HTML/004469.html
    http://flash.lymenet.org/ubb/Forum1/HTML/000909.html
    http://cassia.org/library/Jama_May15,1996_mednews&perspect.htm


    Overcoming Lyme Disease:

    http://www.lymealliance.org/medical/alternative/alt

    Dual Infection:
    http://www.niaid.nih.gov/publications/dateline/0996/page3.htm


    Babesia:
    http://flash.lymenet.org/ubb/Forum1/HTML/001624.html
    http://flash.lymenet.org/ubb/Forum1/HTML/003767.html
    http://x-l.net/Lyme/abstracts/98.human_babesiosis.htm
    http://flash.lymenet.org/ubb/Forum3/HTML/000677.html


    Ehrlichia:
    http://www.vetmed.ucdavis.edu/VBDP/granulocytic/Relate-W.htm
    http://www.cdc.gov/ncidod/EID/vol2no1/walker1.htm


    Rocky Mountain Spotted Fever:
    http://flash.lymenet.org/ubb/Forum1/HTML/002027.html
    http://flash.lymenet.org/ubb/Forum1/HTML/003351.html
    http://flash.lymenet.org/ubb/Forum1/HTML/001999.html


    Bartonella:
    http://flash.lymenet.org/ubb/Forum1/HTML/004846.html

    Visit Lyme Net members sites:


    Kent's story (Troutscout)

    http://www.ildf.info/


    Wild Condor's story-
    http://www.geocities.com/wildcondor2/wildcondor.



    Chiropractic Neurology Referral Site:

    http://dendrites.com/contacts/dacnb_1.html


    Tick pictures:
    http://www.ent.iastate.edu/imagegal/ticks/

    Rash pictures:
    http://www.lyme.org/gallery/rashes.html
    http://www.lyme.org/gallery/gallery.html

    Insurance:
    http://www.geocities.com/HotSprings/Oasis/6455/insurance-links.html

    Free meds:
    http://flash.lymenet.org/ubb/Forum1/HTML/004031.html

    Lots of links on Lyme Disease:
    http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html




    Be sure to see:


    Downloadable summaries of peer-reviewed, scientific literature in PDF (Adobe Acrobat Reader) format are available at the following website. The topics covered include: documented symptoms of Lyme disease, persistent infection despite antibiotic treatment, seronegative Lyme disease, and a collection of photographs and quotations on the cystic form of the Lyme disease bacterium.

    http://www.lymeinfo.net/lymefiles.html


    [This message has been edited by Tincup (edited 30 January 2003).]

    IP: Logged

    Tincup
    Frequent Contributor
    Posts: 9347
    From: THE MOON
    Registered: Oct 2000
    posted 24 June 2002 13:42
    --------------------------------------------------------------------------------
    Latest report concerning chronic Lyme and treatment:

    Med Clin North Am 2002 Mar;86(2):341-9, vii.

    LATE AND CHRONIC LYME DISEASE- Sam T. Donta, MD* Prof. of Medicine, Divisions of
    Infectious Disease and BioMolecular Medicine Director, Lyme Disease Unit Boston University Medical
    Center, Boston, Massachusetts Corresponding author for proof and reprints: Sam T Donta MD Boston
    Medical Center 650 Albany Street-8th floor Boston MA 02118 (617) 638-6017 (617) 638-6009 (fax)
    sam.donta@bmc.org (email)

    INTRODUCTION- Following the introduction of Borrelia burgdorferi into the skin by an infected tick, the
    organisms begin to spread both locally and systemically. Several days typically elapse before the appearance
    of the first sign of infection, i.e. erythema chronicum migrans (ECM), or other less typical rashes (29). The
    rash occurs in fewer than 50% of patients with Lyme Disease (8,10), but the true incidence of Lyme
    Disease in the absence of a rash is unknown. The occurence of multiple rashes is indicative of systemic
    spread of the organisms. Multiple rashes usually do not occur until 2-4 weeks following the initial tick bite.
    This is the same time period during which the organisms are being disseminated to their target tissues and
    cells. The incidence of multiple rashes was initially reported to occur in as many as 50% of cases, but has
    been much less common in the last two decades, probably because of frequent use of antibiotics.
    Approximately 4-6 weeks following the tick bite, the first systemic symptoms (other than multiple rashes)
    occur in some patients, usually in the form of "flu" (15). These symptoms include sore throat, severe
    headaches and neck aches, and severe fatigue. Rhinitis, sinusitis, and cough are not usually present,
    distinguishing this "flu" from other influenza-like illnesses. While the Lyme-flu symptoms can
    spontaneously resolve, patients can experience recurrent "flu". Soon after the onset of Lyme-flu,
    fatigue, arthralgias and/or myalgias may begin. The arthralgias appear to primarily involve the large joints
    (i.e. knees, elbows, hips, shoulders), although smaller joints (e.g. wrists, hands, fingers, toes) may be
    involved (29). Some patients may have actual arthritis, often oligoarticular, more frequently in men than in
    women. Earlier estimates were that 50-75% of patients who developed late Lyme Disease had arthritis, but
    more recent analyses suggest that the incidence of actual arthritis in patients with late or chronic disease is
    closer to 25% (33). Neck stiffness is common. The pains are described as severe, jumping from joint to
    joint, and may be present for only short periods of time. Pain in the teeth or in the
    temporal-mandibular joints is not uncommon. Rib and chest pains occur frequently, leading some
    patients to seek care in emergency rooms and urgent care centers for evaluation of possible cardiac disease.
    Frequently as well are paresthesias such as burning, numbness and tingling, and itching. Some patients
    experience crawling sensations, vibrations, or electric shock-like sensations. Rarely is there any actual
    palsy of the affected areas, making this much more of a neurosensory, rather than a motor, disease. In
    addition to paresthesias, purely neurological symptoms and signs include headaches, an aseptic meningitis,
    facial nerve (Bell's) palsy, and encephalitis or encephalopathy that may be manifested by cognitive
    dysfunction, especially short-term memory loss, and psychiatric symptoms such as panic, anxiety, or
    depression (14). The aseptic meningitis and Bell's palsy tend to occur within the first few months following
    the tick bite, but may also occur as part of reactivation disease (9). Other symptoms may include fevers
    (usually low grade, but may be high), sweats (which may be severe), visual dysfunction (described
    primarily as blurriness, but can include optic neuritis or uveitis), tinnitus, sensitivity to sounds, or hearing
    loss. Shortness of breath, palpitations and/or tachycardia, abdominal pains, diarrhea or irritable
    bowel, testicular or pelvic pain, urinary frequency or urgency, dysequilibrium, and tremors are also
    common symptoms. Some of the dysautonomia symptoms can be disabling. Rarer symptoms may relate to
    panniculitis and hepatitis. Rarely as well are congenital and intrautero infection; when this occurs, it
    appears to be similar to toxoplasmosis and rubella, i.e. a primary infection during the first trimester. The
    occurrence of optic neuritis or uveitis raises other possibilities such as multiple sclerosis, but can be part of
    Lyme Disease. The course of the disease can best be described as persistent, but with periods of worsening
    symptoms, often cyclical every few weeks or monthly. Especially disconcerting are persistent symptoms
    such as headaches and fatigue that can be exhausting. Some patients are more symptomatic than are
    others, which may reflect genetically-determined differences in responsiveness or extent of infection. The
    disease does not appear to be progressive or destructive, as with cancer, nor is it fatal, but can be very
    debilitating. The incidence of asymptomatic infection has not been adequately delineated. There appear to
    be substantial numbers of patients who remain asymptomatic, but reactivate their disease a number
    of months or years later, following trauma, pregnancy, a medical illness for which an antibiotic is
    prescribed, or other stresses, including psychological stresses (9). The Lyme OspA vaccine has appeared
    to reactivate Lyme Disease in a number of individuals who knew, but some who did not know, they had
    prior Lyme Disease (11). The mechanisms responsible for the reactivation of the disease have not been
    defined, but may include both molecular mimicry and underlying infection.

    PATHOGENESIS- The pathogenesis of Lyme Disease remains to be defined. From the available studies, it
    would appear that the organisms are trophic for either the endothelial cells of the blood vessels that serve the
    nervous system or for the glial or neural cells themselves (4,24,26,31). Accumulating evidence supports the
    hypothesis of a persistent infection as the cause of the persisting or relapsing symptoms (26,31).
    Whether molecular mimicry is involved in the pathogenesis of some of the symptoms remains more
    speculative (18). Although arthritis can occur in Lyme Disease, the organisms can only rarely be found in
    synovial tissue. And as many of the arthralgias that occur in the disease do not respond well to
    antiinflammatory agents, the disease is more of an infectious neuropathy than an actual invasion of synovial
    or bursal tissues.

    DIAGNOSIS- The diagnosis rests heavily on the clinical symptomatology. When there are clinical signs,
    e.g. rash, aseptic meningitis, optic neuritis, arthritis, an appropriate differential diagnosis must be pursued.
    On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished
    from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a
    frequent cause of fibromyalgia or chronic fatigue (8,12). Other microbes have been proposed as
    causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia,
    especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but
    definitive proof of cause and effect has not yet been established (6, 23). There has been an attempt to
    separate "late" Lyme Disease from "chronic" Lyme Disease, the former being manifested by objective signs
    of arthritis or neurological disease (32). Some have denied the existence of chronic disease, inferring that
    these patients suffer from psychiatric disorders; some have used the term "chronic" to mean post-treatment
    disease ("post-Lyme"), assuming that the infection has been treated, and the remaining symptoms are in the
    same realm as those patients who have "fibromyalgia" or "chronic fatigue" (27, 30). These assertions are
    speculative and remain unproven. That chronic Lyme Disease actually exists, and is likely the most common
    form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and
    untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from,
    fibromyalgia and chronic fatigue (1, 28). As with other multisymptom disorders, chronic Lyme Disease is
    a clinical syndrome consisting of fatigue, arthralgias and myalgias, and other nervous system dysfunction (7).
    Furthermore, the results of treatment studies appear to support the hypothesis that persistent infection
    is responsible for the chronic symptoms. It is likely that Lyme Disease will serve as a useful model for
    other chronic multisymptom disorders. Whether the pathogenesis of "late" Lyme Disease differs from that of
    the chronic form of the disease remains to be established. Routine laboratory tests are usually normal in
    Lyme Disease. The ESR is most often normal, distinguishing it from some of the inflammatory disorders
    such as rheumatoid arthritis or lupus. Culture of the borrelia is possible early in the disease, usually from
    biopsies of the erythema migrans rash; however, most laboratories are not capable of culturing the
    organisms. The only currently available useful laboratory tests are the immunologically-based ELISA and
    Western blot assays. The recommendation was made in 1994 to have a two-tiered testing system in which
    the Western Blot would only be done on ELISA-positive samples (5). The recommendation was based
    primarily on the results obtained from patients with arthritis (13), did not take into account the chronic form
    of the disease, and was made despite the lack of consistent reproducibility of results between various
    laboratories (2, 16). The ELISA has been shown to be an unreliable test in many patients with Lyme
    Disease, both in early infection and later disease (8, 10). Part of the reason for the lack of sensitivity of
    the ELISA is the use of whole organisms, resulting in a high amount of background absorbance. After
    correction for the high background, only a small percentage of positives can be detected. Because Western
    blots separate the proteins of the borrelia, specific reactions can be visualized, and more accurate
    interpretations of the results made. Over 75% of patients with chronic Lyme Disease are negative by
    ELISA, while positive by Western blot (8, 10). Patients with oligoarticular arthritis may be more likely to
    have robust IgG responses and positive ELISA tests and IgG Western Blots (13). By Western blot analyses,
    the first immunologic reactions in Lyme Disease are to the 41kd flagellar protein, and the 23kd OspC
    protein. Typically, at the time of the ECM rash, there will be an IgM reaction against the 23kd and 41kd
    proteins, and no IgG reactions. Within the next few weeks, the IgM reactions persist, sometimes
    accompanied by less specific reactions against 60kd and 66kd proteins, and IgG reactions are now visible
    against the 23kd and 41kd proteins. Thus, in the presence of an appropriate clinical picture, the
    immunoreactivity against the 23kd and 41kd proteins appear to be diagnostic of Lyme Disease. Whereas the
    41kd protein is not unique to B. burgdorferi, the 23kd protein appears to be unique. Also apparently unique
    proteins of B.burgdorferi are the 31kd (Osp A) and 34kd (Osp B) outer membrane proteins, and the 35kd,
    37kd, 39kd, and 83/93kd proteins. Reactions to the 31kd proteins are not usually seen until after a year or
    more following the onset of disease. Not all patients with symptoms for more than one year, however,
    display reactions to the outer membrane proteins. Most symptomatic patients have specific reactions on IgM
    Western blots (8,10). With resolution of the symptoms, the IgM reactions disappear or attenuate. IgG
    reactivity may continue to be present with resolution of symptoms, but it typically also disappears or
    attenuates with successful therapy. There are some patients (20%) who have symptoms, but whose
    Western blots are negative (8,10). If the borrelial organisms remain intracellular, with no extracellular
    reemergence once established, this could explain the absence of additional or persistent immune responses.
    PCR (Polymerase Chain Reaction) is a highly sensitive means to detect microbial DNA or RNA, and it was
    hoped that this technique would find an important role in the diagnosis of Lyme Disease. Thus far, however,
    despite the specificity of this method, borrelial DNA or RNA has not been reliably detected in the blood,
    urine, or spinal fluid of patients with early or later forms of Lyme Disease, findings again supportive of an
    intracellular reservoir for the borrelia. It should be possible to develop a better, highly specific ELISA for
    Lyme Disease, using recombinant 41kd, 23kd, 31kd and/or 34kd (and perhaps other B.burgdorferi-specific)
    proteins. Currently, however, the Western blot assay is the most reliable immunologic test.

    TREATMENT- In vitro, B. burgdorferi is sensitive to several antibiotics (20,25). This assumption is
    complicated, however, because of the long incubation times needed to determine minimum inhibitory
    concentrations (MIC), as the borrelia have doubling times of 20-24 hrs. With these limitations, the results of
    a few studies show minimum bactericidal concentrations (MBC) to penicillin of 8ug/ml, ampicillin: 2ug/ml,
    tetracycline: 1-2ug/ml, doxycycline: 2ug/ml, ceftriaxone: 0.5ug/ml, cefotaxime: 0.5ug/ml, cefuroxime:
    1-2ug/ml, cefixime: 8ug/ml, erythromycin: 0.5ug/ml, clarithromycin: 0.5ug/ml, azithromycin: 0.5ug/ml, and
    ciprofloxacin: 4ug/ml. At the time of the first rash, any one of several antibiotics appear to be effective, if
    given for 2 weeks, according to several published studies. However, a number of patients so treated
    developed subsequent symptoms of arthralgias, fatigue, and paresthesias, with positive Western blots, who
    were then successfully treated with longer courses of antibiotics (8, 10). The recommendation at this time,
    therefore, is that tetracycline, doxycycline, or amoxicillin be used for 1 month if ECM is the only symptom
    of Lyme Disease. Once any other symptoms appear, the treatment of Lyme Disease for only 2-4 weeks
    is associated with frequent failures and relapses (8, 10). Our initial experience suggested that a 3 month
    course of tetracycline was associated with a higher success rate (8). In patients with symptoms present
    for more than six months, the treatment course may need to be more prolonged, or a retreatment
    course of varying length may be needed. In patients with symptoms for more than a year, 12-18
    months may be needed for complete resolution of symptoms. The rationale for a longer treatment course
    is based on extensive observations (8,10), plus the analogy to the longer treatment courses required for
    tuberculosis, leprosy, Q fever, and certain fungal diseases. With Lyme Disease, the slow growth rate and
    metabolic activity of the borrelia would seem to correlate with the need for longer treatment periods. Once
    treatment is initiated for patients beyond the earliest signs of infection, their symptoms frequently increase
    during the first several days, or even for the first several weeks of therapy. For patients with preexisting
    symptoms of more than a few months, relief of any of their symptoms may not occur until after 4-6 weeks of
    therapy (8, 10). Typically, there are short periods of relief, followed by relapsing or migrating symptoms;
    with continued therapy there are longer symptom-free periods. Some arthralgias may require 3 months or
    more to resolve, and fatigue may be the last symptom to disappear. The preference for tetracycline evolved
    because of the large number of failures that were noted in patients who had been on ampicillin and
    doxycycline. Patients generally had some response to doxycycline, but it was uaually not complete, nor
    long-lasting. Tetracycline may be more effective than doxycycline simply because of the greater dose, i.e.,
    100mg of doxycycline twice daily is not equivalent to 500mg of tetracycline three times daily; also,
    doxycycline is highly protein-bound, compared to tetracycline, which could limit the availability of free drug
    to diffuse into tissues and cells. Some physicians use doxycycline at doses of 300-400mg daily to try to
    achieve a successful result. A strict comparison between doxycycline and tetracycline has not yet been made.
    Minocycline has also been used by some physicians, with varying success, but faces the same issues of
    dosage and protein binding. Of the beta lactams used for the treatment of Lyme Disease, the most
    efficacious appears to be ceftriaxone. In limited comparitive trials, cefotaxime appears to be equally
    efficacious, and high-dose IV penicillin may also be effective. In early Lyme Disease, oral amoxicillin is as
    effective as doxycycline. In later disease, many failures are noted, despite the use of up to 3 grams of
    amoxicillin daily, with probenicid. Cefixime would also not appear to be effective therapy. Cefuroxime axetil
    has been evaluated only in the treatment of early Lyme Disease, and appears comparable to doxycycline.
    Limited reports of its use in later Lyme Disease have not shown it to be efficacious. The role of the newer
    macrolides in the treatment of Lyme Disease needs further assessment. Erythromycin has been regarded as
    ineffective, despite its good in vitro sensitivities. Azithromycin has been reported to be less effective in
    the treatment of early Lyme Disease than amoxicillin (21). Some physicians use clarithromycin and
    azithromycin in higher dosages and for longer periods of time, but there have been no reports of greater
    success with these drugs than with the tetracyclines or beta-lactams. In our experience, all macrolides are
    effective when combined with a lysosomotropic agent, especially hydroxychloroquine (see below) (10). In
    evaluating the possible factors, it would appear that antibiotics that can achieve intracellular concentrations
    and activity are the most efficacious drugs. The results of studies in Klempner's laboratory using a tissue
    culture model of borrelia infection demonstrated that ceftriaxone was incapable of eradicating intracellular
    organisms (17); similar experiments in Raoult's laboratory using an endothelial cell model demonstrated that
    tetracycline and erythromycin were effective, but beta lactam antibiotics were not (3). These results are in
    line with our experience that the tetracyclines and macrolides achieve the greatest success. In contrast to
    beta lactams, antibiotics of the tetracycline and macrolide classes are capable of good intracellular
    penetration. Experience with the macrolide antibiotics has been disappointing, however, when compared
    with its in vitro activities against the Lyme borreliae, and with the established efficacy of macrolides against
    other intracellular parasites such as chlamydia, legionella, mycobacterium-avium intracellulare, and
    toxoplasma. If, though, the Lyme borreliae reside in intracellular vesicles that are acidic, the macrolides'
    activity would be sharply decreased at the lower pH. This is in contrast to the tetracyclines, which are active
    at acid pH; even so, the activity of doxycycline was shown to be further increased by increasing the pH. In a
    tissue culture model of ehrlichia infection, the use of lysosomotropic agents such as amantidine, NH4Cl, and
    chloroquine increased the killing of intracellular organisms by doxycycline (22). Based on those studies, and
    the hypothesis that late Lyme Disease symptoms are due to persisting intracellular infection, we have
    been successfully treating patients using the combination of a macrolide and hydroxychloroquine
    (10). As regards "CNS" disease, there is no evidence that ceftriaxone is more successful than either the
    tetracyclines or the combination of macrolide and hydroxychloroquine; if our presumption that the
    pathogenesis of the disease involves the localization of the borrelia to the endothelial cells of the blood
    vessels serving the nervous system or to glial or neural cells is correct, then one would not need to have a
    drug that can cross the blood-brain barrier to be effective. Indeed, the tetracyclines can cross the blood-brain
    barrier to some extent, and were used when initially introduced into clinical medicine for the treatment of
    meningitis, with some success. Macrolide antibiotics do not cross the blood-brain barrier, but have been
    effective in treating other CNS infections (eg toxoplasmosis), and in our experience have been effective in
    reversing the neuropsychiatric symptoms and signs (eg SPECT scans) of Lyme Disease (10). With regard to
    the issue of bactericidal vs bacteristatic effects, any such effect in vivo has not been demonstrated. Finally,
    there have been no reports showing any change in antibiotic resistance patterns during the course of
    treatment. Ultimately, the determination of efficacy of therapy depends on the clinical response.

    FUTURE - The diagnosis and treatment of Lyme Disease have been hampered by less than adequate
    diagnostic tests and inadequate comparisons of antibiotic regimens. Specific antigen-based ELISA tests
    should result in greater specificity, but sensitivity of any tests based on measurements of the host immune
    response might still be of limited value if the borrelia remain intracellular. Most useful would be the
    development of tests that can determine the presence and extent of any residual borreliosis. In the therapy of
    Lyme Disease, double-blind, placebo-controlled and comparitive trials are needed to answer the questions
    relating to duration and class of antibiotic therapy. The apparent failure of a regimen of one month of IV
    ceftriaxone, followed by two months or oral doxycyline, to improve the outcomes of patients with chronic
    Lyme Disease (19) was not surprising, based on prior observations that neither regimen used for a limited
    duration was capable of yielding patient improvement (8,10,33). Additional trials are needed to evaluate
    whether longer durations of treatment, using tetracycline itself, or the novel combination of macrolide and
    lysosomotropic agent, would be proven effective treatments.


    REFERENCES 1. Asch ES, Bujak DI, Weiss M, et al. Lyme Disease: an infectious and postinfectious syndrome. J Rheum 21:454-61,
    1994. 2. Bakken LL, Case KL, Callister SM, et al. Performance of 45 laboratories participating in a proficiency testing program for
    Lyme Disease serology. JAMA 268:891-5, 1992. 3. Brouqui P, Bodiga S, and Raoult D. Eucaryotic cells protect Borrelia burgdorferi
    from the action of penicillin and ceftriaxone but not from the action of doxycycline and erythromycin. Antimicrob Agents Chemother
    40:1552-4, 1996. 4. Cadavid D, O'Neill T, Schaefer H, and Pachner AR. Localization of Borrelia burgdorferi in the nervous system and
    other organs in a nonhuman primate model of Lyme disease. Lab Investigation 80:1043-54, 2000. 5. Centers for Disease Control.
    Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme
    Disease. MMWR 44:590-1, 1995. 6. Choppa PC, Vojdani A, Tagle C, et al. Multiplex PCR for the detection of Mycoplasma
    fermentans, M. hominis, and M. penetrans in cell cultures and blood samples of patients with chronic fatigue syndrome. Mol Cell
    Probes. 12:301-8, 1998. 7. Donta ST. Lyme Disease: A clinical challenge. J Spirochet and Tick Dis 2:50-51, 1995. 8. Donta ST.
    Tetracycline therapy of chronic Lyme Disease. Clin Infect Dis 25: S52-56, 1997. 9. Donta ST: Reactivation of latent Lyme Disease. X
    Annual LDF International Conference on Lyme Borreliosis, National Institutes of Health, April 1997. 10.. Donta ST. Treatment of
    chronic Lyme disease with macrolide antibiotics. In: Program and abstracts of the VIIIth International Conference on Lyme Borreliosis;
    June 20-24, 1999; Munich, Germany. Abstract P193. 11. Donta ST: Reactivation of Lyme Disease following OspA vaccine. Int J
    Antimicrob Agents 17:S116-7, 2001. 12. Donta ST: The existence of chronic Lyme Disease. Current Treatment Options in Infectious
    Diseases 3:261-2, 2001. 13. Dressler F, Whalen JA, Reinhardt BN and Steere AC. Western blotting in the serodiagnosis of Lyme
    disease. J Infect Dis 167:392-400, 1993. 14. Fallon B and Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psych
    141:1571-83, 1994. 15. Feder HM Jr, Gerber M, and Krause PJ. Early Lyme disease: a flu-like illness without erythema migrans.
    Pediatrics 91:456-9, 1993. 16. Fister RD, Weymouth LA, McLaughlin JC, et al. Comparative evaluation of three products for the
    detection of Borrelia burgdorferi antibody in human serum. J Clin Microbiol 37:2834-7, 1989. 17. Georgilis K, Peacocke M, and
    Klempner MS. Fibroblasts protect the Lyme Disease spirochete, Borrelia burgdorferi, from ceftriaxone in vitro. J Infect Dis166:440-4,
    1992. 18. Gross DM, Forsthuber T, Tary-Lehman M, et al. Identification of LFA-1 as a candidate autoantigen in treatment-resistant
    Lyme arthritis. Science 281:703-6, 1998. 19. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in
    patients with persistent symptoms and a history of Lyme Disease N Engl J Med. 345: 85-92, 2001. 20. Levin JM, Nelson JA, Segretti J,
    et al. In vitro susceptibilities of Borrelia burgdorferi to 11 antimicrobial agents. Antimicrob Agents Chemother 37:1444-6, 1993. 21.
    Luft BJ, Dattwyler RJ, Johnson RC, et al. Azithromycin compared with amoxicillin in the treatment of erythema migrans. A double
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    Phagolysosomal alkalinization and the bactericidal effect of antibiotics: the Coxiella burnetii paradigm. J Infect Dis 166:1097-102,
    1992. 23. Nicolson GL, and Nicolson NL. Chronic infections as a common etiology for many patients with chronic fatigue syndrome,
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    nonhuman primates with the N40 strain of Borrelia burgdorferi leads to a model of Lyme neuroborreliosis faithful to the human disease.
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    Eur J Clin Microbiol 6:424-6, 1987. 26. Roberts ED, Bohm RP Jr, Lowrie RC Jr, et al. Pathogenesis of Lyme neuroborreliosis in the
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    27. Seltzer EG, Gerber MA, Carter ML, et al. Long-term outcomes of persons with Lyme disease. JAMA 283:609-616, 2000. 28.
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    Steere AC, Malawista SE, Hardin JA, et al. Erythema chronicum migrans and Lyme arthritis: the enlarging clinical spectrum. Ann
    Intern Med 86:685-98, 1977. 30. Steere AC. Lyme Disease. NEJM 345:115-25, 2001. 31. Straubinger RK. PCR-based quantification of
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    kacan
    Frequent Contributor
    Posts: 64
    From: McMinnville, Tn 37110
    Registered: Mar 2002
    posted 24 June 2002 18:42
    --------------------------------------------------------------------------------
    Thanks Tincup,
    This is extremely helpful.

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    Tincup
    Frequent Contributor
    Posts: 9347
    From: THE MOON
    Registered: Oct 2000
    posted 30 June 2002 01:31
    --------------------------------------------------------------------------------
    Since I keep having to find this.. I am posting it here.

    LYME DISEASE QUESTIONS AND ANSWERS

    Q: What is Lyme disease?

    A: Lyme Disease is caused by a bacteria, specifically known as a spirochete (similar to the one that causes syphilis) and can be found at least 9 different species of ticks, 6 species of mosquitoes, 13 species of mites, 15 species of flies, 2 species of fleas, and numerous wild and domestic mammals including rabbits, rodents, and birds. Once transmitted to humans, the spirochete causes damage by spreading to various parts of the body. It can infect any and all organs and tissues in the body, causing a multitude of symptoms that can make a person very ill, sometimes totally disabled, and it can be fatal.

    Q: Can Lyme Disease be transmitted from person to person?

    A: The spirochete that causes Lyme disease has been found in semen, urine, blood, breast
    milk and other body fluids and tissues. Those who have Lyme disease are prohibited
    from donating blood or organs. Lyme disease has also been shown in a number of cases
    to be passed from mothers to their unborn children and to babies through breast milk.
    The spirochete can be found in the blood of deer which poses a threat to hunters and it is recommended that anyone handling raw venison use gloves.

    Q: What are some of the signs and symptoms of the disease and its effects?

    A: Unless a doctor is very experienced with Lyme disease, (he or she) may not recognize
    it until it is too late or not at all. Lyme Disease has been misdiagnosed as a variety of
    other conditions, including but not limited to, multiple sclerosis, chronic fatigue,
    Alzheimer's, Fibromyalgia, depression, lupus, ADD, and various forms of arthritis. The list of possible symptoms is overwhelming. Anything from hearing loss to panic attacks surfacing in otherwise healthy individuals can be the first indication a person has contracted Lyme. Many patients do not recall a tick bite (thought to be the most common form of transmission) and many never get the typical bulls eye rash or flu-like symptoms that are sometimes associated with early stages of Lyme. Lyme can affect the eyes causing sensitivity to light, floaters, conjunctivitis, unequal pupils, bacterial infections, optic neuritis, blurred or double vision, and even blindness.

    The brain and surrounding tissues may become infected and can leave the patient with permanent damage and/or pain. Cranial nerve palsies, encephalopathy, meningitis, dementia, memory deficits, brain hemorrhage, intracranial pressure, and aseptic meningitis can all be caused by
    Lyme Disease.

    A number of people develop problems with their digestive tract and people with Lyme can battle acid reflux, diarrhea, bloating, cramps, partial to full blockages, and pain. The bladder and reproductive organs are not spared and menstrual problems may surface in woman, while swollen testicles and pelvic pain may cause problems for men. There is often brain "fog," memory problems, confusion, difficulty thinking, and speech difficulties. Extreme fatigue may be a constant problem, along with muscle spasms and joint pain. The heart and lung problems found in Lyme patients can range from palpitations and shortness of breath, to heart block and respiratory failure.

    Depression, severe anxiety, insomnia, and mood swings are common. The list goes on and on. The most important thing to remember is to consider Lyme even though a tick was not seen, or as rash did not appear, or a blood test comes back negative, especially if someone seems to have “bizarre” or seemingly unrelated symptoms, “atypical” diseases of any kind, or a disease that does not respond to “standard” treatment. The standard blood tests often used to detect Lyme antibodies are missing approximately half of the cases of Lyme Disease. Lyme, according to the Center for Disease Control, is a “clinical diagnosis” and negative tests should NOT rule out the disease. A lab specializing in Lyme Disease and co-infections should be used for the best chances of aiding the clinical diagnosis.

    Q: Can Lyme cause other diseases?

    A: Lyme can mimic many diseases and can force the patient to require treatment for a
    variety of other problems. The thyroid responses can be off and require adjunct therapy.

    Other infections (such as bladder, sinus, eye, and kidney infections) often develop and
    are hard to fight off once the immune system is compromised. As the spirochetes inhabit
    and die off in the human body, toxins develop, which can cause a multitude of chronic problems unless treated properly. A VCS test should be done to detect toxins.

    Q: If caught early, can the effects be minimized?

    A: Outdated information indicates a tick must be attached for at least 24 to 48 hours to infect a person. This is NOT the case. If you are bitten by a tick, the old wait-and-see approach can be devastating. Once in contact with an infected source, the earlier the treatment the better. You should NOT wait for blood tests, rashes, or symptoms to
    appear before being treated if you have a tick bite.

    Q: What type of treatment is available and how long does it run?

    A: Treatment protocols vary depending on the amount of time between the infection and
    when treatment begins. Current guidelines indicate newly discovered tick bites and early cases should be treated with antibiotics for a minimum of four to six weeks, and late stages usually require a minimum of four to six months of treatment, either IV or oral medications, or both. If treatments are discontinued before all symptoms of Lyme disease have ended, the person can remain ill and relapse. Many patients who were not treated
    properly in the past have developed chronic cases of lyme and may need ongoing
    treatment to be able to keep from deteriorating.

    Q: What are the long-term effects of Lyme disease?

    A: Patients can relapse with any and all of the original symptoms, develop new ones and
    progressively deteriorate as time goes by. Lyme disease can cause pain and may affect
    the ability to walk and may limit the range of motion. Speech, writing skills, or
    communication problems may worsen. Many patients become bedridden or house bound.
    Damage to the brain and other organs can result. The financial burden of Lyme can be
    devastating. In addition, some insurance companies continue to deny necessary
    treatments, which further stresses individuals and worsens their condition.

    Q: What is the risk of contracting Lyme disease?

    A: In some areas of the country where winters are not severe, it is possible to have nearly year-round exposure to ticks and other insects carrying Lyme disease. One female tick can produce 2,000 to 5,000 babies. Once an area has a small tick population, the numbers
    increase rapidly. Ticks are carried into new areas by birds, pets, wildlife and people.

    Q: What is the best way to prevent getting Lyme disease?

    A: Often it is difficult to wear long pants, long sleeve shirts, shoes and socks and a
    hat outdoors in the summer without suffering from heat related problems. I recommend
    wearing light colored clothing, doing regular tick checks while outdoors and again after returning home. Showering using a stiff wash cloth may help to dislodge ticks before they become fully attached. I also recommend Repel Permanone be applied to outdoor clothing, hats, outdoor duffel bags and equipment. This unscented product kills ticks as they crawl across treated surfaces instead of trying to simply deter them as most repellents try to do. Yards can be treated with Sevin which is available locally in the garden department of many stores in a dust or concentrated liquid form. It won't kill all of the ticks but it will reduce the numbers to a safer level. I do NOT recommend the current Lyme vaccine that was recently pulled from the market.


    Q: What other tick borne diseases can affect humans?

    A: There are increasing numbers of Babesia, Bartonella (cat scratch fever), Rocky
    Mountain Spotted Fever, and Ehrlichiosis being found as in patients originally diagnosed with Lyme disease or in patients who are exposed to ticks. These diseases
    may appear with or without typical symptoms and are often being overlooked, causing
    patients to suffer. These co-infections may become chronic if left untreated and all have
    been found to be responsible as a cause of death in some individuals.


    Lyme Net Flash Discussions:
    http://flash.lymenet.org/scripts/Ultimate.cgi

    Cheryl’s Lyme Site: http://www.aero-vision.com/~cheryl/lymes.html

    Lyme Disease: The Sensible Pursuit of Answers: http://www.x-l.net/Lyme/li.htm

    Dual Infection: http://www.niaid.nih.gov/publications/dateline/0996/page3.htm

    Lots of links on Lyme Disease: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html

    BARTONELLA ALERT

    It is well known that co-infections may occur with Lyme Disease relatively frequently. Patients with a
    history of Lyme Disease who have incomplete resolution of symptoms should be evaluated for Bartonella
    infections. Bartonella is an intracellular, gram-negative bacteria that can become chronic. Certain lab tests
    may not detect the infection due to a variety of strains and the lack of sensitivity of the tests. It is advised to
    use both PCR and IFA methods of testing and not to dismiss the disease due to negative tests when
    symptoms are present. Various Bartonella species have been recognized since the early 1950’s.

    Bartonella may not present in its usual form when additional infections, such as Lyme or Babesia are
    present. In addition, typical Bartonella lesions are not always seen in patients, therefore, a diagnosis of
    “fever of unknown origin” should alert a physician to consider Bartonella. It is estimated that approximately
    2/3 of the patients with Bartonella have a fever. Involvement of practically every organ has been reported.

    There are a variety of symptoms associated with Bartonella, including, but not limited to, the following:

    GENERAL: Fatigue, Restlessness, Combative behavior, Myalgias, Malaise, Liver and/or Spleen involvement, Abdominal pain, Infectious Mononucleosis-like Syndrome, Granulomatous Hepatitis

    BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients
    with Bartonella.

    Note: Approximately 50 percent of patients who develop Encephalopathy can be affected
    by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches,
    Cognitive Dysfunction, and CNS Lesions may be evident.

    RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may
    develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the
    head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.

    EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch
    Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud’s Oculoglandular Syndrome,
    and Papilledema.

    BONES AND MUSCLES : Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.

    HEART: Endocarditis, Cardiomegaly.
    Possible lab findings: The following may show up during standard testing: Thrombocytopenia,
    pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes.
    X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal
    reaction. Cardiomegaly may show up on a chest X-Ray.

    Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies
    strongly suggestive of lymphoma do occur.
    Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the
    parenchyma.

    TREATMENT: You MUST consult a knowledgeable physician for information on treatment for
    disseminated Bartonella. Some of the medications which have been used in the past have included Doxycycline (with or without Rifampin), Ciprofloxacin, Erythromycin, Azithromycin,
    trimethoprim-sulphamethoxazole, gentamicin, and other macrolide antibiotics.