Lyme disease diagnosed after 11 years CFIDS

Discussion in 'Fibromyalgia Main Forum' started by Truesun, Apr 22, 2008.

  1. Truesun

    Truesun New Member

    Hello all my fellow sufferers, I just wanted to say that I have been traveling to Dr. Lerner in Michigan who specializes in CFIDS and he diagnosed me with Lyme disease using the Western Blot. Eleven years I have been tortured and now my heart is showing damage also. I have been reading about Lyme now and am blown away by how many symptoms I have and how ignorant doctors are. Now my insurance company has denied the IV antibiotics Dr. Lerner wishes to use because they say they are experiemental!!! I am in the process of switching to BC/BS where I feel I'll have a better chance. Note to all Moms-I had my last son six years ago and ended up in ICU after his birth. In reading the latest on Lyme disease I realize now the chances I've past it too my kids. If your kids are sick too you may wish to have them tested. We are waiting on reports for our eldest. Wish me luck fighting with insurance! Sincerely, Truesun
  2. hopeful4

    hopeful4 New Member

    Eleven years is a very long time, but I'm so glad that you have finally found the culprit and gotten a correct diagnosis. (My lyme diagnosis "only" took 5 years to get.)

    I'm sorry that your insurance is making it so difficult for you to get your IV ABX. The insurance companies count on us being too sick to fight them. Is it possible to appeal their decision? Or maybe your new insurance will be easier to work with.

    Now that you know that you have lyme, I wish you the best on your road to recovery, and the best for your kids' health, too.

  3. mollystwin

    mollystwin New Member

    I am happy for you that you have finally figured out what caused your illness, but angry as well that it took so long!! I too suffered for years until I was properly diagnosed with lyme disease.

    One thing I would like to mention is to be sure to take plenty of probiotics when on antibiotics to avoid a yeast issue. I know that Dr. Lerner does not address the yeast thing. If yeast becomes an issue you can take supplemental antifungals too. Space the probiotics between antibiotics as well.

    I wish you well with your treatment, it isn't easy! And it really isn't fair that we have to fight insurance companies to get the treatment we deserve!! Good luck with that too!!

    Take care,
  4. connieaag

    connieaag New Member

    I'm glad you're getting treatment. As I'm sure you have read, it's a long haul, but hopefully having something to "treat" will be a big relief. I know it is for us!

    Just when the public was becoming more understanding of FM/CFS, now they need to know about Lyme.

  5. buttercakes

    buttercakes New Member

    I am one of those people who was told it was FM and CFS for about 10 years, then finally found a good Dr. who was open minded enough to concider Lyme. I had a positive test 1/08,
    What a relief to find out!!! I hope Dr. Lerner is A good choice for you and you recover well, It does take along time to get well, so try not to get discouraged. God Bless
    and good luck
  6. greatgran

    greatgran Member

    I have had lyme test which came back negative. My question , if you have lyme's is it a roller coaster illness .

    Yesterday I had a good day, but today I feel terrible, the anxiety, worry, depression body aches you name it I feel it today. So back to bed I go. I am so sick of this roller coaster thing.

    Oh, my Dx is CFS and FM but I so doubt so often. I am so glad you have a Dx and can soon get started on a cure. Good luck with your insurance.

    Oh, I have had no rash, do not run a fever in fact my temp is sub-normal seems my symptoms don't fit, that is the symptoms I google.

    [This Message was Edited on 04/23/2008]
  7. minlane

    minlane New Member

    glad to hear you are getting somewhere, the not knowing makes one sick as well. i am curious to know what type of heart damage you are experiencing. I, too, like others have cfs dx, but do wonder if lyme and cfs are more related than anyone thinks. i asked to be tested a year ago for lyme, i was told when it came back it was neg, i am a nurse so i know a little about bloodwork and when my samples were drawn ,along with other tests, the tube top colors did not match for what the lyme test called for, only the cbc.sed rate, wbc etc. i am not saying it can't be done like that but i never seen it done that way, and too western blots have to be sent out where i am i often wonder if it actually is easily observed in blood after many years. i have contacted one of the major clinics i found here on site, but have not heard back yet, can you tell me more about dr. lerner and his fees. minlane hope you get the results you need and get better!!!!!!!!!!!!!!!!!!!!
  8. munch1958

    munch1958 Member

    Welcome to the Die Lyme Die Club! Glad you finally got a diagnosis after 11 years.

    It only took me 26 years to figure it out. My treatment protocol is in my profile. It's a record of the last 2 years so it's very long!!!

    If you have not already done so please sign the Lyme Crymes petition:

    This database was compiled using existing Pubmed studies. Much of the info known about Borrelia before the Dearborn Conference can be found here.

    It's chock full of all the past studies and their findings! Just click on the left hand toolbar to find links to articles.

    You can use the database there to appeal your insurance company's decision to deny IV Abx. Just click on the link to go to Pubmed articles.

    I encourage everyone to read "The Dearborn Conference" summary. This is why the Elisa test or EIA/EFA fails to diagnose over 85% of cases of borreliosis (Lyme)!

    I urge everyone to get a copy of your test to see which one it was!!! Lyme is so controversial many doctors won't treat it.

    We need to push to have the bands they claim they took out for the now defunct Lymerix vaccine back into the testing. Maybe labs will improve their testing accurancy this way.

    As it stands, the Quest WB is only about 30% accurate because Lyme specific bands were removed.

    Igenex WB is 78% accurate.

    What most doctors fail to realize is that the CDC criteria was only meant for reporting purposes not diagnosis. Any history of an erthema migrans rash is diagnostic so no testing is required. Any symptoms later on can mean a Lyme relapse!

    If you take the stats for your state and multiply them by 10 or 20 you'll get the true number of cases of Lyme.

    Just click on your state's link here:

    It would be a national health crisis for Big-Insurance to pay for treatment for everyone! But then who would the drug companies sell their stuff to if the chronic illness people got better?

    Is there a support group meeting near you? Lots of good info there. Also, check out Lymenet's newbie links.

    My Lyme-Friend Dottie & I just got a proclamation from the Gov of Illinois declaring May Lyme Awarenss month here. That was an uphill battle so we are framing it for display at our local support group meetings.

    Our meeting location:

    This is a link to the proclamation:

    Since May is almost here, I've been busy with that so I
    don't have too much free time to post here. I'm down with two back fractures due to osteoporosis so that doesn't help things.

    My HPA axis and thyroid were most likely shut down because of long term chronic infection. You'll need to be certain to get your hormones tested!

    Does anyone else find it odd that the treatments that work for Lyme are some of the same as CFS & FM? To name just a small few:

    Vitamin B12 shots and Rich's methylation protocol;
    Thyroid, adrenal (cortisol & DHEA) and growth hormone;
    Yeast meds;
    Diet changes;

    Keep us posted!!![This Message was Edited on 04/23/2008]
  9. EricaCFIDS

    EricaCFIDS New Member

    Thank you so much for posting this! I'm thrilled for you to get an answer. I'm getting my results on my retest for the IGENEX Western Blot test on Monday from my LLMD (after taking Doxy for 3 weeks prior to the test). I too have had CFIDS and Hashimoto's/hormone problems for many years. I'm very hopeful I will get a good answer.

    I also had 2 kids during all of this. I'm worried for them. My LLMD said he's going to focus on me first and then address my family. I'm so sad if I gave my kids lyme or a coinfection. Right now they seems fine, but my LLMD said it may not show up until puberty. Did your kids show signs of illness? If so, at what age? I hope they will be okay. Isn't it wonderful to at least know how to help them if they do have lyme??!!

    I have BC/BS PPO and I'm waiting to see how they pay. I will let you know. Good luck with everything! I'm just so happy you have an answer and can get your health back (and your families too!)

    All the best,
  10. bunnyfluff

    bunnyfluff Member

    To the Die Lyme Die Club!

    Like most of us here, it was the old wastebasket standby of FMS/CFS. Whatever THAT is supposed to be.

    My son has hit puberty and has tested positive as well, although his symptoms are not as severe as mine got. Nor will I ever let them get like that. Because I a now wise to it all. :)

    Gran~ it is common for Lyme patients to have a low temp- mine is as well. Lyme disables your HPA so that you can not run a high fever.....Lyme does not do well in temps over 102. It will disable any body system it has to to avoid detection and survive.

    I a very sorry for those here who get a positive Lyme test, but for some reason want to hold on to *CFS*.

    CFS is NOT a disease.

    best of luck in killing this demon. we are always here for you.

  11. Truesun

    Truesun New Member

    HI all you wonderful people. I was amazed when I logged in tonight and saw all these supportive, welcoming replies. I am a bit overwhelmed really. As many of you may realize people aren't always understanding of you when you're chronically ill. As you may have heard-It's all in our head- so you're response means a great deal. I want to answer everyone's questions so I will start with Why did Dr. Lerner decide to test me for Lyme? I believe it was symptoms such as constant low body temp, also I made a statement I can no longer get a fever and haven't had one in ages- which someone addressed the whole dirty business of the HPA axis a few posts above. I think he did it because of these things and the other symptoms I was having brain fog, exhaustion, blue, numb toes, etc. MOjoey ask about how Dr. Lerner wants to treat me and to begin it is six weeks of IV Cexapraxone -I know that is spelled WAY wrong but it should give you some idea. GreatGran ask about it being a roller coaster and the answer is it ABSOLUTELY has been for me. But since reading about this illness I see that the bug has a month long cycle of activity and this explains why we have good spells and down spells. Also, why the IV treatment must be at least six weeks too catch them in all their stages. Bad little buggers! I know I do better when I don't feed them sugar of any kind. Protein in my friend. Someone ask about my kids showing signs early and unfortunatley the answer is yes. I didn't know what I was seeing until now but they were and are there. We live on vitamin C and zinc in my house now we'll be adding antibiotics. Thanks everyone sooooo much. Truesun[This Message was Edited on 04/24/2008]
    [This Message was Edited on 04/24/2008]
  12. Truesun

    Truesun New Member

    MinLane, This is in response to your questions about Dr. Lerner's fees. The first office visit was near $1200.00 for visit and EKG/Chest X-ray in office. Also, he does the CMV and EBV test in office. I don't have my other bills yet but if you look up ladybugmandy 's postings she writes about his more. Let me know if I can be of further help. Truesun
  13. acer2000

    acer2000 New Member

    Lerner tests pretty much everyone who complains of CFS like symptoms for Lyme as far as I can tell. He tested be twice and co-infections (but not Bart or rickettsia). He used labcorp and I don't know what his criteria for treatment are... (ie do you have to be CDC positive, etc...)
  14. acer2000

    acer2000 New Member


    You sound like your LLMD thinks that everyone with a dx of CFS actually has lyme, dispite what the tests say. When he treats people who have "CFS" for Lyme, do they all get better? I am curious about this since there are so many people who test negative (even through IGENEX) for lyme, but still appear to have the symptoms of CFS/Lyme. Does your LLMD treat them with good results anyways?


  15. EricaCFIDS

    EricaCFIDS New Member

    Good questions..... It's my understanding that many people who have chronic lyme will test negative, even through IGENEX. After many years with lyme, our bodies will stop making the antibodies that are picked up by the testing. The lyme also hides in our systems, making it extremely difficult to detect. LLMDs more often will make a clinical diagnosis than one strictly off the testing. They have to because there is such a high incidence of false negatives, even with IGENEX. Sometimes, just initiating treatment will confirm their diagnosis.

    My neighbor has lyme and was an acute case with the bulls eye rash, horrific acute symptoms, terrible neurological problems and he was treated for 18 mos. with ABX and has had a 95% recovery!! At one point he was in a wheel chair. He was even on a picc line directly into his heart. He never once tested positive for lyme!! Although, I don't think he ever had the IGENEX test done. He also never saw an LLMD. He has an HMO (Kaiser) and saw an infectious disease specialist. The only reason his doctor even considered treating him for lyme, was he was tested for neurological damage and had it. He then agreed to give him Doxycycline to see what happened and within 3 weeks he showed significant improvement. His doctor said "Well, you have lyme then!". Some people get worse before getting better, especially people with chronic or latent lyme.

    My neighbor's story is compelling and positive all at the same time! It's clear that each person can and does have a different array of symptoms with lyme and the co-infections. Each person also can react differently to treatments.

    Hope that helps! All the best,
  16. acer2000

    acer2000 New Member

    Sorry if my message came out (was written) wrong. I wasn't trying to incite your Dr. just throws everyone on ABX for the hell of it. I am genuinely interested in any actual statistics that show response to treatment for lyme, even in people with "negative" tests for it. I was more asking about your Drs. experience. I have tested negative on WBs from Quest and Labcorp with the exception of band 41 IGG and IGM. I don't have syphillis... and I seemed to feel better on ABX the one time I took them (zithromax) and I didn't feel better on Valcyte. So I'm gonna re-investigate lyme and bacterial infections...
  17. acer2000

    acer2000 New Member

    Well I posed on lymenet asking for doctors in my area. I'm in MI so hopefully there is a decent doc somewhere near here.
  18. mollystwin

    mollystwin New Member

    I live in Michigan and see a great doctor. Unfortunatly he is no longer accepting new patients!!

    There are a few good doctors here in our state. I would advise you to call Linda at Michigan Lyme Association for some referrals. Google the website for the phone number.

    Good luck!!!
  19. cbs1234

    cbs1234 New Member

    Watch out for all the hype about lyme. Long term antibiotics are very, very dangerous and can do much more damage than they can help. I have yet to come across anyone that has recovered from so called lyme after taking long term ABX (someone speak up if they are 100% normal after taking long term abx for "lyme"). However, I know lots of people that had their lives destroyed by taking antibiotics. Many LLMD's, just like many other docs, are in it for the moolah. The more diagnosis they give, the more moolah comes in the door.
  20. Ales

    Ales New Member

    After 10 years of an illness that could be described as a severe case of ME/CFS I was also diagnosed with Lyme disease. I have positive Westernblotting of both blood and cerebrospinal fluid, I also have vast areas comprising of 80% of the total brain volume that represent hypoperfusion, as revealed by a SPECT/CT scanning. But I don't think borrelia burgdorferi sensu lato is the cause of my illness. There are so many myths about neuroborreliosis like the effectiveness of the long term antibiotic therapy. In my opinion borreliae or other pathogens only trigger ME/CFS, which is a brain disease. I am sure the patients who were exposed to borrelia burgdorferi sensu lato are severely ill but I have a hunch something else should be addressed than the large and well researched spirochets that might not be even present. I think some antidepressants, e.g., citalopram, amitriptylin that were discovered to accidentally be potent central negative immunomodulators could be useful and the quest for new antidepressants that act like central cytokines inhibitors might be accidentally fruitful also in the treatment of ME/CFS. But of course I may be wrong, perhaps I am a member of only a small subgroup of PWCs. From the beginning of my illness I percept it like a brain disease and I have tried around 95 neuropharmaceuticals. The most effective so far have been citalopram and modafinil.

    Apologies for non native English.