Looks Like I've Got It

Discussion in 'Lyme Disease Archives' started by chaps, Apr 7, 2010.

  1. chaps

    chaps New Member

    After having chronic fatigue for two years and doing my own research and symptom comparisons, I was absolutely convinced I had Lyme - even though my primary care physician tested for it twice and said it was negative. Through the advice of a friend and someone on the CFS/FM board, I contacted IGENEX labs and had their test done. Their dx was negative (my results were posted on another thread). In disbelief, I had a flow cytometry test done that tests for the Borrelia Burgdorferi bacteria. Supposedly if the count is less than 17, you don't have Lyme. My count was 5. Another negative dx. Finally, I threw my hands up and assumed that it must be something other than Lyme, even though my gut was telling me I had it.

    I went to a doctor who saw that my Epstein Barr antibodies were high, so he told me that I had chronic Epstein Barr and prescribed an antiviral. I took the antiviral for 6 months. I felt better. I stopped taking the antiviral. Then I relapsed. Went back on the antiviral, this time for 9 months. I felt better, but some things persisted, or even got worse, such as bladder inflammation, prostate inflammation, heart inflammation, occasional palpitations, abdominal discomfort. Then the arthritis started coming back. That's when I said, alright, there's got to be something else going on beside the Epstein Barr. I had found from research that Epstein Barr sometimes tags along for the ride when you have a different primary problem that saps your immune system, like leaky gut syndrome.

    Disgusted and lacking confidence in medical doctor and homeopaths with knowledge deficiencies, I finally contacted a medical intuitive who right off the bat told me, LYME. I said "I knew it!" She also told me that I had fungus and parasites, the leaky gut, the whole bit.

    I then contacted a homeopath in Connecticut who has Lyme. He was recommended by a friend of mine up there who has had Lyme for 12 years. He prescribed a CD57 test. Got the results today. My count is 36. Considering that anything below 200 is considered an indicator of Lyme, then I guess a 36 makes a pretty strong suggestion.

    Because I'm in Florida, this doctor can not treat me, particularly since he used oxidation therand I.V. Vitamin C therapy. He directed me to the ACAM website and wished me luck. It looks like I have my work cut out for me. I'm going to have to talk to Lyme-literate doctors and homeopaths and decide on what kind of treatment I want to pursue.

    I'm very scared of taking long and strong courses of antibiotics. I'm sure that my kidneys have already been stressed from the long course of antivirals, toxins, and parasites they've been dealing with for the past 4 years.

    If anyone out there has good advice, a recommendation for a doctor close to or in Florida, and a safe treatment that worked please share it with me.

    On the one hand it's a bit scary knowing that you've got something that's virtually incurable. On the other hand, I'm somewhat relieved to at least feel as though I know who the enemy is and now I can start fighting it rather than taking stabs in the dark.

    Any helpful advice or information would be greatly appreciated.
  2. Nanie46

    Nanie46 Moderator

    Hi,

    Glad you are finally getting some answers.

    It just goes to show, again, why you cannot rule out lyme with a lab test. It happens everyday and there are many, many undiagnosed sufferers because of it.

    There is some info in the sticky at the top of the lyme board here.

    I also recommend going to lymenet.org...click on flash discussion.....sign up for free.....post questions on the Medical Questions Board, Seeking a Doctor Board, Support board, etc. Their boards are very busy, especially medical questions and seeking a doctor.

    There are many people there who have used therapies other than antibiotics. You can do searches there also.

    You need evaluated for common coinfections like babesia, bartonella, ehrlichia and others.

    I will add some links here with good info......



    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf



    http://www.ilads.org/lyme_disease/about_lyme.html



    http://www.lymedisease.org/lyme101/coinfections/coinfection.html



    http://www.drcharlescrist.com/testing.htm



    http://www.lymepa.org/Basics2007v1.2Rev.pdf



    http://www.angelfire.com/biz/romarkaraoke/whento.htm



    http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf



    I hope you find what is right for you and recover!

  3. chaps

    chaps New Member

    Thanks, Nanie.

    I'll get going on that.

    Is it me, or is this Lyme board kinda dead? There seems to be a small fraction of activity here in comparison to the CFS/FM board. I guess that's not so surprising since CFS encompasses a lot of things as opposed to one easily identifiable disease, but there's a lot of talk about Lyme over there that should really be over here.
  4. Nanie46

    Nanie46 Moderator

    Yes, this lyme board is not very active.

    It is a good thing that we are able to discuss lyme sometimes on the FM/CFS board since many people do not understand that it is a bacterial illness that can cause symptoms that are often diagnosed as FM or CFS.

    I would bet that most people on the CFS/FM board have tick-borne diseases....not just lyme. I see many posts where the person has symptoms of babesia or bartonella too.

    It is my belief that FM and CFS are symptoms of a larger infectious picture, and it is a real disservice to give that diagnosis. Dr's and patients are satisfied to have a diagnosis and they stop looking for a cause...leading to a lifetime of misery.

    I think it is because Dr's are so uneducated about Lyme and it is not easily recognizable by them, that so many suffer forever.

    Most Dr's think that a negative test rules out lyme and they are sooooo wrong. What a travesty for all the very sick undiagnosed lyme patients.

    People on the CFS/FM board feel that their diagnosis is absolutely right and therefore have no reason to consider lyme. I even thought that way myself. Fortunately I opened my mind and my eyes and did my own research, which changed my life after 21 years.

  5. chaps

    chaps New Member

    When you look at MY situation, the one thing that kept me sick for so long was........THE DOCTORS!!!

    When I first went to my primary care physician, he told me that I was suffering from depression. He completely ignored the fact that my sedimentation rate was up and that I was getting bronchial allergy symptoms-something that I never had before. I gave him a whole list of other symptoms that have nothing to do with depression and he told me that it was all in my head. He prescribed Lunesta so that I'd sleep. .....Nice. From my own research I deduced that I could have had Lyme disease. He told me that there's no way I could have Lyme disease, that it came from a tick bite and only people up north get that. Upon my insistence, he ordered the standard LabCorp Lyme titer test, which is useless unless your in the begining stage. It showed nothing.

    Then I went to an infectious disease specialist. He was supposed to have been one of the finest in the area. I remember him looking at me and saying "whatever you've got, the buck stops here! We're going to figure out what you have. I may have to refer you to a rheumatologist or a neurologist, but we're going to get to the bottom of this." Those were comforting words, but his actions didn't live up to them. He did a bunch of bloodwork so his conclusion was, you've got chronic fatigue syndrome. "It's due to low seratonin levels in the brain which make you feel tired. I can give you a prescription for Zoloft and it will boost your seratonin and make you feel better." I told him about a doctor on the west coast of FL (Michael Cichon) who was a specialist in treating Epstein Barr/CFS and asked if I should go to him. He said, "no that guy gives all kinds of I.V.s with immunoglobulin and all this other stuff, but it doesn't work. It's a bunch of hocus-pocus." Turns out Dr. Cichon is also an LLMD. If I had only gone to him back then, I might have saved myself 4 years of misery. I opted not to take Zoloft. I knew that depression had nothing to do with it and I wasn't about to put harmful chemicals in my body for nothing. All these doctors want to do is push pills so that the drug companies send them on a boodoggle to Vegas and get them drunk and laid 4 times every year.

    Because of the neurological symptoms, I went to a neurologist who ordered an MRI to see if I had MS. That was negative.

    I went to the Cleveland Clinic in Weston, FL. Let me tell you, the doctors at that place were really a bunch of flunkies (as they all tend to be in Florida). The Cleveland Clinic in Ohio might have good doctors, but in Weston, Florida, they SUCK! I spent a fortune there with 11 specialists and none of them could make heads or tails of anything. The infectious disease specialist there could not make any diagnosis at all, didn't even have a recommendation.

    Anyway, I posted my symptoms and stated my case on the ProHealth CFS/FM message board, and someone (I can't remember who) suggested that I get Lyme tested by Igenex. By this point I was having arthritic symptoms and was getting desperate. I had the Igenex test done. The folks at the Igenex lab told me that I tested negative (even though there were some positive and IND bands). After more research, I found out that the flow cytometry test can find the borrelia burgdorferi bacteria in your blood if you have it. That test even came back negative. My own gut feeling was telling me that I had Lyme, yet I could not get any kind of test to confirm it.

    I heard about Dr. Daniel Dantini from the CFS/FM board and decided to go to him. He saw that I had Epstein Barr and treated me with antivirals and for food sensitivities. This got me some improvement, but the inflammation and other Lyme symptoms didn't go away. This is what told me I had something else going on. By the way, this wasn't the first time Epstein Barr showed up in my bloodwork. The other doctors saw it, but they said it was just a "head-fake," that I could have been exposed to EBV a long time ago and my antibodies have stayed elevated ever since. They didn't think the fact that I was also showing EBV symptoms meant anything. Anyway, I believe that I had Epstein Barr, but it was just an opportunistic freeloader, taking advantage of the fact that the Lyme and its effects had weakened my immune system. So right now, I'm keeping the EBV at bay, but now I've got to get rid of the Lyme and it's accompanying parasites/fungus/yeast. I think that mercury toxicity from all of my silver amalgam fillings is also part of the picture.

    The moral of this story: Don't depend on the doctors!! Most of them don't know their asses from a hole in the ground! You MUST be your own advocate. If a doctor recommends a treatment, only do it if it makes sense to you. If you give them the benefit of the doubt and you don't get results reasonably quickly, then their diagnosis and treatment is probably wrong. Keep researching yourself and move on.

    Practicing medicine is just a 9:00 to 4:00 job Mon.- Thurs. (golf on Friday) to most of these guys. They don't give a rat's ass if you suffer or die. As long as your bills are paid before you die, that's all they care about. They care about their own family, not you or your family. To the doctors, he who dies with the most toys and has screwed the most mistresses, wins.

    Never underestimate the power of your own mind to not only fight disease, but to diagnose yourself. If you can move fear out of the way and combine research with intuition/gut feeling, you'd be surprised how self-diagnosis can out-perform the doctors. You can use doctors as tools (because in reality, they are a bunch of tools - lol) but EVERY INDIVIDUAL IS RESPONSIBLE FOR HIS OR HER OWN HEALING!

    Unfortunately, all of our lives, most of us have been conditioned to go to the doctor if we feel sick and completely put ourselves in their hands. Whatever they say is gospel. We must follow exactly what they tell us to do to the letter if we want to get well. Let me tell you, it doesn't work that way.

    All I can say is THANK GOD FOR THE INTERNET. If it weren't for research, forums, support groups, etc. I probably never would have persisted in figuring out whether or not I had Lyme and probably would have died from its complications.

    Doctors hate the internet because when patients have all this information available to them, it causes them to question the doctors and challenge them more. It really exposes how much the doctors really don't know, and they've never had their asses showing like that before.

    But the battle has only begun for me. I've got to figure out pretty quick which doctor I want to use and get on with the fight.

    I want to thank all of you on these boards who have converged upon me like angels whenever I've had a question. I can't tell you how helpful it's been and how much it is appreciated. God bless you all.
  6. Nanie46

    Nanie46 Moderator

    Hi,

    Your story sounds oh so familiar!!!

    I suffered for 21 years with fibromyalgia, was treated by Dr Dantini in 2007 with antivirals and food elimination. I believe that my improvement at that time was due to the food elimination only.

    I had a huge relapse in Feb 2008 while trying Ambien CR for sleep. It awakened the Lyme that I didn't know I had and caused severe head, neck and shoulder pain.....like a 4 in diameter drill was drilling through the base of my skull and coming out my mouth 24/7.

    I thought I would die. The pain was nearly unbearable...but it sent me on a quest to find out what the cause of my symptoms was...since for 21 years I thought it was a virus.

    I saw another post on the CFS/FM board where a person said all their symptoms were gone after lyme treatment...and their symptoms were the same as mine.

    I researched online and found lymenet.org. I read and read and read some more. I read lots of info from ILADS.org including Dr Burrascano's treatment guidelines.

    I asked my PCP to order a western blot and he laughed. I went to a Rheumatologist and asked them to order a western blot from Igenex. They said they couldn't use Igenex (even though I was going to pay for it anyways) and ordered an ELISA and western blot through Labcorp.

    Of course it only showed band 41, and I was sent on my way.

    I called Dr Dantini in FL and faxed his office a Dr order form from Igenex with the tests that I wanted. He ordered them for me.

    When the offically "CDC negative" and "Igenex negative" results came back, Dr Dantini told me he didn't think my problem was lyme, it was viruses.

    I had a copy of the results faxed to me and I knew better from reading Dr Burrascano's paper.

    I had lyme specific positive and IND bands....and a history and symptoms that all made sense.

    I found a LLMD through lymenet.org's Seeking a Doctor board and called and made an appt. I got in in 2 weeks.

    That was 14 months ago. I am slowly getting better. It's a long road back after so many years of untreated illness.

    I hope you find a good LLMD soon. You will need a good eval for coinfections like babesia, bartonella, ehrlichia, etc.

    Our stories are so important because I know that there are plenty of others who do not yet know that the cause of their illness is borrelia burgdorferi.

    Just like you and I got the idea about lyme from the CFS/FM board, we will be able to help guide others who may also have it and do not know that they should even consider it, or do not understand that testing is unreliable and that 99% of Dr's cannot recognize, diagnose or treat chronic lyme.

    All the best to you.
  7. chaps

    chaps New Member

    When I hear of everyone elses experiences, I feel somewhat fortunate that I might be on the right track after 4 years as compared to some people for whom the process took much longer.

    Nanie, since you worked with Dr. Dantini, there's a chance that you may not live far from where I am. Would you mind sharing with me the name of the doctor you found most effective for you?

    I've heard that Dr. Cichon near Tampa treats patients with an aggressive antibiotic protocol. Aggressive kinda scares me. On the one hand I understand that Lyme is tough to beat and you have to hit it hard, but on the other hand, I know how reckless some doctors can be filling you with all these dangerous chemicals that might harm you more than the disease itself. It's tough deciding which route to go. Any doctor recommendations would be appreciated.

    Continued healing,
    chaps
  8. Nanie46

    Nanie46 Moderator

    Hi,

    I treated with Dr Dantini via phone consults. I live in PA.

    My recommendation would be to go to lymenet.org's Seeking a Doctor board.
  9. munch1958

    munch1958 Member

    It's great that you hung in there and finally got a diagnosis. Oprah says to listen to your inner voice. That's God talking to you. I think Oprah is right on that one. Your story also sounds so familiar!

    My story is in my profile along with a running diary of sorts. Way back in the beginning I could get better by with changing my diet and treating candida. But as the years went on and I got more and more tick bites so that just didn't work anymore.

    This paper is interesting as the authors estimate that a person gets one tick bite per decade. If your lifestyle (gardening, camping, hiking, fishing, etc) has you in close contact with nature the number will be higher and if you live in an endemic state obviously the chances of more tick bites are greater too.

    www.ilads.org/files/harvey.pdf

    Once my hormones took a dive then it went all downhill. Many people with Lyme have thyroid, adrenal, and pituitary issues along with a low libido. I'm currently on 1-2 kinds of thyroid meds, DHEA, cortisol, and HGH. It's important to see a holistic doctor (not a conventional endocrinologist) for testing and B-HRT if necessary.

    Essentially, I thought it was CFS and then Fibro for close to 30 years because I was involved with the Endometriosis Association. They caught the connection between endo, candida and CFS/FM early on. But now that I know it's Lyme screwing with my immune system causing the "infection collection" I am on antibiotics, antivirals and antifungals.

    I'm on IM Claforan (cefotaxime) twice a day. My thighs are killing me from the shots. I'd have my hubs do the shots in my tush but he'd think it was foreplay. Mostly, I'm too chicken to get a PICC line because I'm worried about infection. Lots of PICC lines get infected so that worries me.

    If I could get a do over of the last 4 years I'd have gone for more aggressive treatment earlier on when it was offered to me. I also would have gotten treated for Babesiosis first. Chances are if you have any sweating especially night sweats you've got it.

    I hope you watch the movie "Under Our Skin" and see the new movie "Under The Eight Ball". Both movies have websites.

    http://www.underourskin.com/

    http://www.undertheeightball.com/

    Also, look into info about southern tick borne illnesses from the Lone Star Tick or Borrelia Mastersii. See info about Dr Edwin Masters and his fight with the CDC to acknowledge a different type of Lyme Borreliosis in the southern states. To learn what the pathogens ticks carry in your state check here:

    http://www.lymememorial.org/State_Stats/State_Statistics_Florida.htm

    Other states:

    http://www.lymememorial.org/State_Statistics.htm

    Yes, you are right about this board not being very active. Most people jump over to Lymenet once they get a diagnosis. The main CFS/FM board here is not very Lyme friendly. There's a long history of fighting about this issue and a certain group of people who insist that Lyme should be talked about over here. Nanie's got a great list of people who went on to find out that they had Lyme all along but some people are so happy to get any kind of diagnosis that they cling to it without looking at anything else.

    My CD-57 count was 30 when I started. Then it jumped to 70. Now it's 102. My doc says 120 is the minimum she'll accept for successful treatment. I'm about 95% better. I can't imagine how I'd feel with a count over 200 or even will ever get there.

    Good luck to you!!!! I don't post here very often but if you send me a PM on Lymenet I can answer just about any question you might have on this crud.
  10. chaps

    chaps New Member

    Thanks very much, your advice is helpful. It's comforting to have people out there like you who are willing to share and be empathetic to newbies like me. I am bound and determined to beat this thing and I hope that some day I can help others in this situation.

    Talk about God's voice, Oprah's probably right, but I think God or other spirits also send messages to those with the gift of being able to hear them very vividly. I'm glad that I found the medical intuitive (some prefer the term "pyschic"). She confirmed my feelings and gave me that extra "umph" to be looking at Lyme again. I wouldn't have considered resorting to the supernatural as a first line of defense, but I just felt like something was missing and I needed help that no one else could give me. I'm glad I contacted her. She said to try the Salt/C thing. I should have asked her if that's what will work for me. I'd love to try something that doesn't involve antibiotics but only if it's going to work.

    Munch, if 1958 is your birth year, then you and I have something else in common.

    Best of luck to both of you and thanks. I'm sure we'll be talking again.

    Hugs,
    chaps
  11. munch1958

    munch1958 Member

    Chaps...

    1958 was an excellent year!

    How was it when you turned 50? I was very sad to have 6 broken vertebrae due to my low growth hormone status and sarcoidosis (a form of Lyme?) My 50th pic was of me having a margarita while wearing my back brace. Of course, I'm wearing makeup and my PJs. Alcohol and I are no longer friends since that last tick bite in 2001. Sad because we own a bar.

    Here's my FB page:

    http://www.facebook.com/linda.m.sauer?ref=profile
    [This Message was Edited on 04/12/2010]
  12. chaps

    chaps New Member

    On my 50th birthday, I was consumed with wondering if I was going to make it to 55, I was feeling so badly. The tough thing about this illness for me is the uncertainty. Not knowing if you've really figured out what you've got, how bad it is, whether it's going to cause other life-threatening things, and not knowing if you're treating the right thing. My life went from being stable, normal, healthy, and happy to one big mystery.

    Prior to getting sick, I was a health nut. Early to bed, in the gym at 6:30AM, at work at 8:00, doing water ski shows all weekend. I was with two water ski teams and at age 45 I was practicing skiing 4-5 hours and doing a show in the evenings on the weekend. I was in better shape than lots of people half my age.

    Then came this, and it changed my life radically. There have already been two occasions when I started feeling better so I got a little overzealous with my exercise and knocked myself back into being flat on my back. I've finally learned not to overdo it.

    I've never been a smoker or a drinker. Once every couple of months I might have a Margarita with some Mexican food, but that was the extent of it. So layin' off the booze for the past four years has not been a problem. Haven't had a single drink, and it never even crosses my mind. I sure miss having a pizza once in a while, though.

    I'll take a look at your facebook page.

  13. nancycleek

    nancycleek New Member

    antibiotics are necessary. I also use herbs and supplements like milk thistle,drink lots of purified water, cut out sugar including fruitcose, carbs,caffein. and detox is very important. your Dr should monitor liver function with labs. although no cure yet, remission is obtainable.
  14. herbqueen

    herbqueen New Member

    hi Chaps- can you email me info your medical intuitive/experiences/how you found her ec? f13girl@comcast.net
  15. chaps

    chaps New Member

    I suggest that you go to the website for the International Association of Medical Intuitives http://www.medical-intuitives.net/find.htm. It gives a brief profile of each of those who are a part of the association. Then you can make a decision based on which one you are drawn to for whatever reason.

    I did this as somewhat of a last resort because the American health care/medical system has been failing me for the past four years.
    [This Message was Edited on 04/17/2010]