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Lyme disease update

Discussion in 'Lyme Disease and Co-Infections' started by nofuture, Dec 21, 2013.

  1. nofuture

    nofuture

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    Hey guys,
    I'm seeing Dr. Lerner for my Lyme treatment. With 2 weeks of treatment I'm already feeling better. He said the viruses (ebv & cmv negative, hhv6 low) are not a big deal. I'm glad I am getting better and i want to tell those of you who are struggling like I have to not give up. I saw close to 10 doctors who misdiagnosed me. You know there's something wrong with you when you cannot function on a daily basis. Life is meaningless if you are not feeling well and that is what I thought so too. But, there is hope out there for people who will go above and beyond. Correct me if im wrong, but doesn't Lyme become meningitis if left untreated for too long? I remember back at my college two students died from this. Its a very serious disease.

    The medical community does not help with this kind of disease. I had the opportunity to see the documentary "Under our skin" on youtube and I got to think of the hierarchy of our medical system and how it is truly the devil. Many of you have been looking for answers when it comes to getting better. You must never accept defeat because you are acknowledging that there is no fix, and there is. But you must be willing to go through many doctors. You must be willing to be straightforward to doctors, even if you come of as rude because some will never take you seriously.

    As far as Lyme i heard of a couple things looking for a LLMD, or Lyme Literate Medical Doctor can help immensely if you have Lyme In Michigan I believe that Dr. Lerner is one of the very best. He literally put me back on my feet. What another members said about his fees is also correct. His visits are not that expensive, just the major labs.

    Lastly, I cannot stress enough that you cannot overlook Lyme disease. This is the same mistake I made in the beginning of my illness. You must test for everything weather you think you have it or not. In my case, I never has the tick bull's eye rash or anything like that. I started to feel sick and that was it for me.

    If anyone wants to get my perspective on this debilitating disease or any kind of information I will do the best I can to help because this disease is not thing that will go away on its own. So I am here to pass on my experience so far.
     
    Last edited: Dec 21, 2013
    Lotus97, Hanna, brenda and 3 others like this.
  2. shannah

    shannah Senior Member

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    I'm curious how he tests for Lyme. Does he use Igenix?

    Also were your results positive or indeterminate?
     
  3. JT1024

    JT1024 Senior Member

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    I recently attended a Lyme symposium at Massachusetts General Hospital (November 9, 2013). Numerous presenters covered topics of diagnostic limitations, biofilms, etc.

    Bottom line, current FDA approved testing is inadequate. There is substantial research going on. Best to watch those with financial interest either loss or gain (insurance, government, and vaccine manufacturers). Sadly, I sense government and commercial lobbyists will be detrimental to progress. They are fully aware of the magnitude. The desire is to make money from it rather than to offer diagnosis and treatment guidelines for those already suffering.

    So much more to be learned but it is truly scary how much politics and greed impact "science". While we in the US may think we enjoy free press, the truth is it is absolutely NOT! Publication in journals is tainted by money from big pharma/biotech.
     
    Wayne and taniaaust1 like this.
  4. Ema

    Ema Senior Member

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    I'm also a patient of Dr L. He just used Labcorp testing for me and completely disregarded my two positive Igenex and LTT tests. It didn't inspire confidence in me.

    It's great that he is treating and open to Lyme but I fear that he is missing a lot by using such inaccurate testing especially when better options exist.
     
    Lotus97, Wayne and shannah like this.
  5. Ema

    Ema Senior Member

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    Lyme meningitis is a possibility but it is usually less serious than other types of viral or bacterial meningitis.

    For most patients, it means a stiff neck and headache, both of which are common Lyme symptoms.

    Of course there may also be more serious exceptions so any sudden terrible head pain should always be checked out by a doctor.
     
    Wayne likes this.
  6. Firestormm

    Firestormm Guest

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    I am not up on Lyme Disease but I didn't think
    constituted the disease - I though it was a bacterial infection.
     
  7. Ema

    Ema Senior Member

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    Lyme is a bacterial infection.

    I think @nofuture is just saying that his viral titers did not indicate a viral infection (which is what Lerner is most known for treating) was the problem but Lyme instead.
     
    Firestormm likes this.
  8. Lala

    Lala Senior Member

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    Thanx for your report, so how does he treat you?
     
    Wayne likes this.
  9. anniekim

    anniekim Senior Member

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    Sorry a bit off topic, but can anyone explain what the stiff neck feels like? I ask because the first few years of being ill I had very tender neck glands giving me the sensation of a stiff neck but I don't know whether this is the same as the stiff neck mentioned in Lyme patients, ie if my stiff neck was due to tender neck glands this isn't the classic stiff neck? Hope that makes sense. Thanks
     
  10. Ema

    Ema Senior Member

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    For me it is more of a muscular ache, rather than a feeling of sore glands. It just feels like all my neck muscles have seized up on me and no amount of massage wants to loosen it up.
     
    anniekim likes this.
  11. nofuture

    nofuture

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    @Lala Sorry for the late reply. Dr Lerner uses Rocephin (Ceftriaxone sodium) Iv every 12 hours. You will get a take home kit along with weekly nurse visits to change the dressing on your arm. You also have to see him weekly to take blood work and monitor your progress.

    @anniekim I know the feeling on the sore neck. I did not do too much research but I believe it has something to do with interfering with your thyroid. It put much stress on your adrenals and hormones causing all kinds of symptoms varying from debilitating fatigue to sharp pain, which is what I had experienced.

    @Ema There are more reliable tests out there, but I am feeling good so far on the antibiotics and the suffering has been greatly reduced.

    @JT1024 Yes. It is how it is. This world revolves about money at every aspect of our lives weather we realize it or not.

    @Shannah He does not use Igenex. He uses lab corp's western blot and ELIZA testing. The results were on the low side 1.06, side but still positive.
     
    Last edited: Dec 28, 2013
  12. anniekim

    anniekim Senior Member

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    Thanks @nofuture My neck pain sounds different to what you describe. The neck pain came from very sore lymph nodes so doesn't sound like the classic stiff neck from muscle problems. I rarely get these tender glands now. They happened in the first few years of illness

    I'm glad Lerner has picked up your Lyme infection and I hope treating it will continue to help, I did some Lyme tests with infectolab in Germany. LTT was negative and I had two indeterminate bands so my results don't scream Lyme
     
    Last edited: Dec 29, 2013
  13. nofuture

    nofuture

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    @anniekim Yes. I believe you must keep seeing many doctors until you are cured. If you don't have insurance get one and tackle this problem right away. Life was meaningless for me before.
     
  14. anniekim

    anniekim Senior Member

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    No future, I am glad that it seems Lyme infection is the cause of your ill health and treating it is helping, unfortunately, some of us seem to be having ill health with no tests available yet that come up with what is wrong with us. I'm in the UK so I can't get insured.

    I've had treatment for under active thyroid and low cortisol, still bedridden, sadly
     
  15. nofuture

    nofuture

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    @anniekim It is unfortunate. Those who have access like me took forever to find out treatment because the information is itheld from the public. Unfortunately this a specialization that not many doctors are aware of. For instance Lyme is not considered to be a threat in Michigan, yetIi got it! I've been doing some digging and the trend in the medical community is that illnesses that are curable, and do not require long term treatment, are ignored as priorities because they are not profitable. Truly sad!
     

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