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    Old 04-16-2007, 07:31 PM   #1
    tsmith63020
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    Is it REALLY Lyme? Please help me. :(

    I am copy and pasting from a thread I started in the "Fibromyalgia" section. I was referred here. My symptoms are below, but am confused because I heard Lyme causes "low" body temp not low grade fever. Please let me know if it sounds like Lyme.

    I've posted on these boards before, although not on the Fibro board. I am a 25 y.o. female, and have been having symptoms since I was 17. They have progressively gotten worse, to the point where I can't do anything anymore. I apologize for my inevitable long post, but know that my background can better give you all a greater idea of my problem. I was reading the sticky about Fibro info for newbies. The list was sooo long, and so similar to my problems that I am beginning to wonder. The info I have read from local doctors, and/or most medical sites list the symptoms for Fibro as limited. Much more limited than what I've read here.

    So... Here's what's been going on.

    At seventeen, I started getting HORRIBLE pain in the center of my ribcage that radiated to the center of my back. (Right beneath the bra line) It was so horrible, it literally took my breath away. It happened often. Went to chiropractor who treated me, but couldn't find a cause. The chiro was the first person to mention that I probably had Fibro, but I blew it off. Pain increased over the next year. At 18, it was determined my gallbladder was shot, and it was removed June of 2000, although I still occasionally get the rib/back pain attacks.

    From 18 on, my symptoms increased. I would frequently tire, get dizzy spells so bad I have had to drop everything and sit. Heart palpitations then began, and have never let up. I was diagnosed with MVP last year. I went to a Neurologist last year as well. Never having had headaches in my life, for the past year they have been crippling. Very odd stabs of pain, and then pressure in my temples, and just below. The dizziness increased over the years to the point where sometimes, if I so much as shake my head, I get dizzy.

    I am usually short of breath. Activity or none, I just feel very "weak." I frequently get bronchial/pneumonias and such. Diagnosed with asthma. Never having had sinus issues, this past year has been horrible. My nose is constantly clogged up. I can't breath through it, my nostrils are red everyday. My throat is always scratchy. My face flushes, and I am pale.
    The exhaustion I have everyday is unbearable. Mind you, I am 25, and I see the people my age with so much energy. Sometimes I can't even move.
    I catch infections easily. I had had a chronic UTI for the past 6 months. Between URI, UTI's, and sinuses, my Dr. has prescribed a WHOPPING total of 17 antibiotics over this past year alone. (More than one a month sometimes) Not to mention the antibiotics I've taken for dental work, of which I've had a ton of the past few months. There is no doubt that the meds have completely messed up my system.
    My stomach- Is horrible. I know I have IBS, due to the colonoscopy that didn't find squat last September. For a 25 y.o. to have a colonoscopy, I am telling you it was bad. I have microscopic hematuria off and on for the past year. Had abdominal CT scan, and kidney ultrasound. Can't find a thing wrong.
    And now....The fevers...For a solid year, they've remained. Usually low grade, but definately above my normal. They range from 98.1 (which is fine of course) and by the end of the day, I am up at 99.5 to 99.9
    I am generally ill feeling. Aches and pains everywhere. My back pain is horrible, and I have terrible neck and shoulder pain. Sometimes elbows and knees too. Most days, I have pain. Three doctors have diagnosed me with FMS, and I always blew it off. However, I tried medication. They had me on Tramadol, Flexiril, and Amitryptiline. Didn't really help, because it made me feel like a zombie, so I quit taking it. (Not a fan of medication) Thinking I am much sicker than a disease that was just "painful" not thinking that it produced all these physical symptoms until I read the sticky. My bad, of course.
    I have been tested for everything from Diabetis to Lupus. Nothing. So I am wondering, for my own sanity (because the search for illness is getting old) could Fibro REALLY produce all these symptoms? Can it really be so severe to cause horrible chest pains, muscles, fevers, infections, unbelievable exhaustion, etc... Did any of you ever feel like you were so bad off that it couldn't be fibro only to learn that it really was? I am truly at my wits end. Sick and tired of being sick and tired. I hope you all can help.

     
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    Old 04-16-2007, 07:45 PM   #2
    ticker
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    Re: Is it REALLY Lyme? Please help me. :(

    Hi tsmith, welcome to the board!

    I am sorry you have been sick for so long. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many seemingly unrelated symptoms, and it can affect people differently. Some people have low body temperature from it, some have fevers, some have both.

    Below is a Lyme symptom list. You can have any combination of symptoms.

    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

    To confirm or rule out Lyme disease, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.

    Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. To me your symptoms sound like Lyme disease and Babesiosis. Some hallmark symptoms of Babesiosis are shortness of breath, heart palpitations, severe headaches, dizziness, and night sweats.

    Where are you located? If you would like a doctor recommendation, let us know.

    I also recommend having your thyroid checked. Ask to have the Free T3, Free T4 (besides the T3 and T4) and thyroid antibody tests in addition to the normal panel. They are not usually done but are necessary for a comprehensive view. They are all blood tests. If you need help interpreting your results, let me know. Some people have Lyme and a thyroid disorder.

    It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

    Do not give up. You will find out what is wrong. Hang in there okay?

     
    Old 04-17-2007, 05:36 AM   #3
    so sik of this
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    Re: Is it REALLY Lyme? Please help me. :(

    Hello TSmith!

    I know how you feel. It is really scary when you're young to have so many things going wrong with you all at once. I was 25, now I'm 30 and I have similar symptoms ever since. I have finally thrown in the towel so to speak. I called a Lyme DR in FL and am going tomorrow. I'm over it, I cannot live life feeling this way. The dizziness,muscle aches, and tiredness is really what affects me the most (am dizzy 24/7) and then there's the aggrevation of not knowing what is going on so frequently I cry (lately). Hang in there with me, we'll make it through this. We WILL get our life back -----ALL OF US!!!!!!


    I've been diagnosed with the following:

    Meneires Disease
    Anxiety/Panic Disorder
    Arthritis
    Palpitations


    I'm praying for everyone here to get the strength that they need to live a happy life,

    Last edited by so sik of this; 04-17-2007 at 05:41 AM.

     
    Old 04-17-2007, 06:01 AM   #4
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    Re: Is it REALLY Lyme? Please help me. :(

    Quote:
    Originally Posted by tsmith63020 View Post
    I am copy and pasting from a thread I started in the "Fibromyalgia" section. I was referred here. My symptoms are below, but am confused because I heard Lyme causes "low" body temp not low grade fever. Please let me know if it sounds like Lyme.
    .
    ---Lyme commonly causes Low grade Fevers, AND can also cause low body temperatures because of damage to the Hypothalmus and Adrenal glands.

    Quote:
    Originally Posted by tsmith63020 View Post
    "I've posted on these boards before, although not on the Fibro board."

    "The chiro was the first person to mention that I probably had Fibro,"
    .
    ----What you have to understand is the "Fibromyalgia and CFS" are umbrella diagnosises. DO NOT except this is a diagnosis! They are not a diagnosis, instead they are a definition of symptoms, Chronic Fatigue means a person who is tired and unrelieved by rest, Fibromyalgia is pain throughout the body. Both are real as definitions--NOT as diseases. There is no doubt that people diagnosed with these things are suffering...but most likely from other undiagnosed illnesses...many times LYME! Please...dont settle on this.

    Quote:
    Originally Posted by tsmith63020 View Post
    I am usually short of breath. Activity or none, I just feel very "weak." I frequently get bronchial/pneumonias and such. Diagnosed with asthma. Never having had sinus issues, this past year has been horrible. My nose is constantly clogged up. I can't breath through it, my nostrils are red everyday. My throat is always scratchy. My face flushes, and I am pale.
    The exhaustion I have everyday is unbearable. Mind you, I am 25, and I see the people my age with so much energy. Sometimes I can't even move.
    .
    ----I have had lyme since I am 11 years old I was re-infected 4 times.. Icant walk or move my legs, I have seizures...some of those symptoms you are mentioning were my "early symptoms" though.

    Quote:
    Originally Posted by tsmith63020 View Post
    I catch infections easily. I had had a chronic UTI for the past 6 months. Between URI, UTI's, and sinuses, my Dr. has prescribed a WHOPPING total of 17 antibiotics over this past year alone. (More than one a month sometimes) Not to mention the antibiotics I've taken for dental work, of which I've had a ton of the past few months. There is no doubt that the meds have completely messed up my system.
    .
    ----WHAT WAS YOUR RECTION TO THE ANTIBIOTICS?? Did you feel worse after a few days on them??? Did you expierience any worsening of symtpoms? Lyme patients expieirience a Herxheimer effect---which is a phenomenon originally observed in the treatment of Syphilis, but later found in other illness. It is described as a temporary increase of symptoms when drugs antibiotics are administered. What is known or speculated about Lyme disease herxheimers are based heavily on the reactions seen in syphilis. This is due to the fact both diseases are caused by a bacteria known as a spirochete.However the herxheimer reactions in Lyme disease are not identical to those seen in syphilis, especially in terms of timing, frequency and duration.

    In Lyme disease it is thought that the cause of herxheimers are the result of endotoxin release, that is toxins within the spirochete that are released as the B.b are killed or broken down. This may be a result of the toxins itself or the body's immune response to such.

    Quote:
    Originally Posted by tsmith63020 View Post
    And now....The fevers...For a solid year, they've remained. Usually low grade, but definately above my normal. They range from 98.1 (which is fine of course) and by the end of the day, I am up at 99.5 to 99.9
    .
    ----My temp is around 99.3-100.8 (also low grade fevers)

    Quote:
    Originally Posted by tsmith63020 View Post
    I am generally ill feeling. Aches and pains everywhere. My back pain is horrible, and I have terrible neck and shoulder pain. Sometimes elbows and knees too. Most days, I have pain.
    .
    ----Joints are affected by Lyme the worst.

    Quote:
    Originally Posted by tsmith63020 View Post
    Sick and tired of being sick and tired.
    .
    ----I say this all the TIME!

    ---HERE IS WHAT I RECCOMMEND:

    1) GET TO A LYME LITERATE MEDICAL DOCTOR (they are the only ones who can diagnose Lyme)
    2) BLOOD TESTS: Western Blot and PCR for Lyme: IGENEX (CA), Medical Diagnostic Labs (NJ) or Stonybrook Labs (NY)...You need a lab that tests for ALL BANDS...
    3) TEST FOR CO-INFECTIONS!--Preferably through Igenex
    4) HANG IN THERE!! You seem like you have been on a TON of antibiotics all ready..so you are ahead of the game, LONG TERM antibiotics are what are used to treat/help Chronic Lyme so ...you might be part of the way there depending on what antibiotics were used


    Jess

     
    Old 04-17-2007, 11:00 AM   #5
    tsmith63020
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    Re: Is it REALLY Lyme? Please help me. :(

    You guys... Thank's so much! Seriously, I have gone from a normal person to obsessed. Sometimes you just want to throw in the towel because you don't think you are ever going to get better. Makes it much worse not knowing what is wrong.

    You know, most of the more extreme symptoms started last year. My son was in a local children's hospital, and I caught a NASTY virus that had me sick for three months. During that time, I was bit by a tick, didn't think much of it, only that the tick bite took a long time to heal.

    I asked my GP about Lyme, and he totally blew me off. I live near St Louis, and YES!!! Please help me find a dr.
    This is horrible. How do you guys deal with feeling like crap everyday? Does it get better?

    The antiobiotics, I don't know. I've been on so many back to back, that I think they just made me feel worse. I'm really sick of taking them. I know they are protocol for treating lyme, and I'd been ok if I took them for that, but my GP just kept dishing them out. -sigh-

    Thank's so much, guys. Y'all are great.

     
    Old 04-17-2007, 12:13 PM   #6
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    Re: Is it REALLY Lyme? Please help me. :(

    I am so glad that you checked out the lyme board, when I read your post on the fibro board it reminded me so much of what I have went through, and so many other people that I have talked to and read about. There is a LLMD in Springfield MO. I had his name written down, but now I can't find it. I will keep looking, I am sure that somebody on this board knows his name. Alot of the lyme patients from Texas see him and that is how I got his name. I am so sorry that you have been so sick, my son also has Lyme he got it when he was 8 and he had been so active and such a great athlete, it has been so hard to watch him go from that child to a child who doesn't get out of bed. He is now 14 and was diag. with Lyme last Oct. As was I. I have seen great improvement in him since he started antibiotics 6 months ago. He was not even able to attend school, but now has gone back, he still has problems with fatigue, but is on the road to recovering completely. Like I mentioned to you on the fibro board some antibiotics are not good for the Lyme, especially penicillians, they cause the lyme to convert from spirochete form(which circulates in the blood stream) to cell wall deficient form. This form of Lyme hides in the cell walls and is not completely killed by the antibiotics, they stay dormant until the antibiotics are stopped and then they return to spirochete form and multiply. I know this is probably confusing for you now. Read everything you can find on Lyme, both Ticker and I offered you some good suggestions on info to look up. Also Denise Land has a book out called Coping with Lyme Disease (5th edition) this book helped me alot. You definately need to see an LLMD, luckily you live in MO and there is a very good LLMD there. He will test you through Igenex and help you on your way to recovery, if Lyme is indeed what you have. Please keep persuing this until you are sure it is either lyme or it isn't. It is a serious disease that needs to be treated appropiately. Ask us anything you want to know and we will help you through this, we are here for you! Good Luck and God Bless, Sarah

     
    Old 04-17-2007, 12:24 PM   #7
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    Re: Is it REALLY Lyme? Please help me. :(

    The LLMD in Springfiels is Dr. Charles Crist, there is also an LLMD in Sikeston named Dr. Edwin Masters, don't know anything about him, I have heard really good things about Dr. Crist, though. Sarah

     
    Old 04-17-2007, 12:25 PM   #8
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    Re: Is it REALLY Lyme? Please help me. :(

    Quote:
    Originally Posted by tsmith63020 View Post



    I asked my GP about Lyme, and he totally blew me off. I live near St Louis, and YES!!! Please help me find a dr.
    This is horrible. How do you guys deal with feeling like crap everyday? Does it get better?

    The only doctors in MO that I know are "Lyme literate are:

    Dr. Crist in Springfield, MO
    Dr. Edwin Masters in Sikeston, MO

    ....the amount of antibiotics you had, depending on how close they were administered to when you were bitten may have helped. That could also alter testing results too--this is why it is imprortant to see a Lyme knowledgable doctor who specializes in the diagnosis of Lyme. Did you expierice a Herxheimer at all to any of the antibiotics??

     
    Old 04-17-2007, 12:29 PM   #9
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    Re: Is it REALLY Lyme? Please help me. :(

    I have also heard of this doctor in MO:

    Dr. Carol Ryser in Kasas City
    Health Centers of America
    Specialty: Infectious Disease

     
    Old 04-17-2007, 05:55 PM   #10
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    Re: Is it REALLY Lyme? Please help me. :(

    Hi,

    I read one of your other posts from January where you listed all your symptoms, and I couldn't reply to that one anymore, so I looked at your other posts to give my input.

    Althought you have been "tested" for Lupus and other Autoimmune diseases, what you have described to me sounds greatly like an Autoimmune disease, and it's important to keep in mind that a person can have lupus or another Autoimmune disease without testing positive on any of the indicating lab tests.

    I began having mystery symptoms at age 19, and horrible fatigue at 23...I was 29 before I ever showed ANY sign of autoimmune disease in my bloodwork, and even now I don't test positive on all the tests, and sometimes the test results vary. Even so, due to my persistence and searching out the best doctors, I have finally gotten at least one diagnosis (sjogren's syndrome is one of my conditions) and I realize that there are great chances that I also may have lupus or other conditions.

    I went to 3 unsuitable Rheumatologists who basically wasted a few years of my life, and treated me like a human guinea pig. I now see a rheumatologist 4 hours away, but he works with one of the top rheumatology clinics in the country, and I am finally getting the help and treatment I need.

    I can't say for sure that you have an autoimmune disease, but your symptoms sound very familiar to those experienced by autoimmune sufferers, and I think some more in-depth care and testing is called for.

    Good luck.

    Michelle

     
    Old 04-18-2007, 11:30 AM   #11
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    Re: Is it REALLY Lyme? Please help me. :(

    I do understand where Michelle is coming from, but do not completely agree with her. You should still seek an LLMD and be tested by Igenex for LD. A regular Reumi. most likely will not use the proper testing for LD or if they do use Igenex may not know how to read the bands (read Dr. Joseph Burrascano's Diagnostic Hints and Treatment Guidelines for LD and other Tick Borne Illnesses). The LLMD's do test for all the other autoimmune diseases also, the are not just Lyme doctors. Before I saw an LLMD in Oct. of last year I had spent 8 years being tested for everything by 3 different Reumi's, a cardiologist,Endocronologist, neurologist, IM doc, family practice doc. They repeatedly tested my over and over, the only thing that ever was pos. was ANA, everytime. all Lupus, Anti RO anti LA, anti DNA, RF, anti Smith, all negative, and they kept telling me that eventually I would come up positve for Lupus, they diag. as fibro with Mixed Connective Tissue Disease. All those years I spent taking meds that were making me worse waiting for a Lupus diag. I repeatedly mentioned to all these doc's that I thought I had Lyme, but the Elisa was first neg. and then western Blot was Equivicol, IGM pos. IGG neg. Then my son started having same symptoms, and he was tested by 6 different doc's over a 5 year period, same thing all test neg. repeatedly, but his ANA was neg. The doc's kept saying he was playing too many sports and activities, but kids who are spelling Bee champs don't forget how to spell there, so I knew something else was wrong. My son got his diag 3 weeks before me, finally I knew what was wrong with us. But the guilt that I carry for letting these doc's put us off for so many years is heavy. My son could have been cured when he got the disease instead of becoming chronic. And we both could have been spared alot of pain and damage, and money. I'm not saying that you absolutely have LD, it is possible that you do have an autoimmune disease, but please see an LLMD and get the Lyme ruled out first, this is not something that should be put off. The LLMD will test you for everything under the sun, by the best labs in the country. Good Luck and God Bless

     
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