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Just found out I have active lyme disease. I am stunned. Help!

Discussion in 'Lyme Disease and Co-Infections' started by lizw118, Jun 17, 2012.

  1. Ema

    Ema Senior Member

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    I'm not sure if a trial would be useful honestly with those results combined with a low in range IgG subclass 3. I would expect more positives but I am certainly not an expert on the topic.

    What have you done to treat the positive c pnuemonia?
  2. globalpilot

    globalpilot Senior Member

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    Hi Ema,
    Xrunner said this : "Tests, with either positive or negative results are not critical in the diagnosis.". This implies to me that testing is useless if that statement is true.

    Sure, I'll post the bands from the test as soon as I get them. It'll be later in July. Thanks for your interest.
  3. globalpilot

    globalpilot Senior Member

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    Yes, it doesn't seem I have an Igg3 problem to me either. It would be a very useful test for all those with CFS though as there is a treatment

    I took antibiotics for well over a year for chlamydia pneumoniae. I can't remember which ones though as it was so long ago. It did bring my titres down but I got sicker and sicker. I should get them retested.

    Will add to the list.
  4. Graeme

    Graeme almost there...

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    Those are interesting papers but neither discusses the cell wall deficient (CWD) form which, to me, is the third (along with spirochetal and cyst). Biofilms are an added complication, but I wouldn't think of them as a distinct form. It should be noted that antibiotics are really not effective at all at dealing with these in the absence of an anti-biofilm protocol.

    I suppose CWD borrelia is motile, but I think it deserves distinction from spirochete, as something like amoxicillin will be very effective on spirochetes but not at all on CWD's. To my knowledge tetracyclines are the only really effective drugs for reducing numbers of CWD bugs, but it takes time. As for an overall borrelia drug strategy I think the best approach would be one that includes both tetracyclines as well as cyst busters.
  5. lizw118

    lizw118 Senior Member

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    Just catching up here, everyone. I started taking doxy. I decided to do it because I am still not positive this is not a new infection from the test results. I am doing low dose chelation of metals because it seems like that is what brought the lyme out this time (that is assuming it is an OLD infection).
    Anyway, Graeme, what is a good anti-biofilm protocol? Also, can I get tested for co-infections at quest?
    Thanks
    Liz
  6. Ai-Yai

    Ai-Yai Mad Genius

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    Mom
    Chronic Lyme & Co
    Any serology tests in fact tell abs. nothing.
    One of the best brief description why: http://www.aldf.com/pdf/Halperin_Book_Chapter_17.pdf

    Treatment statistics is unsatisfactorily, long term harmful effect are pretty often.
    (bc of them US and some other societies soon will have such amount of "superbugs" that it will become a separate big problem by its own)
  7. Christopher

    Christopher Senior Member

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    There are plenty of patients who have had their symptoms improve going after Lyme and coinfections. It's complicated - tests are highly inaccurate and treatment protocols vary in success based on patient individuality. And there are some disreputable practitioners who will diagnose and treat incorrectly. However, the blanket statement you made is not valid based on my experience.

    All the propaganda is slanted against chronic Lyme, not in favor of treating it. Here is a good informational website where you can learn more and find a doctor that you can consult with.
    Wayne likes this.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Some are testing by both PCR and then sequencing and finding it. Don't think this is a black and white issue.

    Sushi
  9. Ai-Yai

    Ai-Yai Mad Genius

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    As well as those one who become really worse and get harm ...esp. in long term period.
    Moreover that doesnt' mean anything -i.e. if one gets some kind of responce(usually questioable) to antibiotics that DOESN"T mean that responce is because of chronic Lyme & co.

    Aroud of 50% of so-called chronic Lyme patients were never bitten by a tick...and even more if consider those ones who are usure about that bc they never saw tick on them.
    Also their families anamnesis is talking about the same thing, bc in many cases not only one family member is affected - that is not a feature of the lyme disease.

    How many was really completely cured? - FEW ones.. even not 1% ...only few ones!!!
    About what this talking?
    And btw so-called even more absurd co-infections theory was created just for expalining all those fails in more then 99%.

    Definitely US is best place for business. ;)

    I'm not telling that people are healthy.
    Any serology test never can't be used as the only diagnosis determing feature.

    PCR is good option, but primers and procedure firstly should be well analysed bc false-positive results in case of bad primer or some reagent interaction during procedure are pretty possible.
    The same thing with sequencing procedure and primary "product" for it.


    I'm done with this -whom to trust is a decision of exact patient.

    Take care.
  10. sianrecovery

    sianrecovery Senior Member

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    The rest of us just have to make do with deduction. It really makes it hard to adopt a position of all knowing cynicism. I must work on it - contempt prior to investigation would save so much time.
    Creekee, froufox, Sushi and 1 other person like this.
  11. Ai-Yai

    Ai-Yai Mad Genius

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    Well, you have no option other than use you dedution during your own investigation.

    Sorry, but i have no such many free time to waste.
    I mentioned a link to pretty good initial material for anybody who want to investigate the real situation.
  12. Esther12

    Esther12 Senior Member

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    I've only read bits and pieces around Lyme disease, but to me, it does look like there's good reason to be cynical about the alternative 'chronic Lyme' theories.

    They've not been able to validate their alternative testing, or demonstrate the efficacy of the treatments they suggest in blinded trials. There's no good evidence to support their claims.

    This is complicated by the fact that Lyme disease can be a serious problem for some people, and that the best testing we have is still not fool proof. I understand people without an alternative explanation for their symptoms thinking that the chronic Lyme stuff is worth a go... but it's a really long shot, and things like long term antibiotics can cause problems. I think that it's very likely to be a waste of people's time and money.
    Jenny and Ai-Yai like this.
  13. Ema

    Ema Senior Member

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    Please refrain from discounting or denying the existence of Lyme or other diagnoses as it is inflammatory and against forum rules.

    Many people also discount ME/CFS altogether thinking that they have great proof that it does not exist and our symptoms are all in our heads. We would never allow that kind of disrespectful discussion on this board which is meant to support each other through whatever form or forms our illnesses take. Please be respectful of other members even if you do not agree with their diagnosis. We are all in this together.

    Thanks for your understanding.
    sianrecovery likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    Hi all,

    I hope you don't mind if I ask a few questions.

    If real me/cfs involves having an upregulated immune system, do people with real me/cfs heal from lyme ?
    In other words, do their cfs symptoms like the over the top reaction to excitotoxins, elevated viral titers, increased allergies, swollen lymph nodes, pem, etc clear up with the antibody treatments ? Does lyme cause real me/cfs ?

    Or are we the ones who have to take on the "everything that could go wrong did" approach to healing if
    we have lyme ? I think it was horowitz who spelled this out. And more importantly does this work ? Or is it too much for our bodies ?

    This, btw, is the approach my integrative doctor
    has taken. I have no idea what she's looking for 3/4 of the time but she keeps finding stuff wrong with me.

    Tc .. X
  15. Graeme

    Graeme almost there...

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    Anyway, Graeme, what is a good anti-biofilm protocol? Also, can I get tested for co-infections at quest?
    Thanks
    Liz

    I don't actually have any experience with biofilm protocols. However it appears a good one would include anticoagulants and disodium EDTA, which has the bonus of aiding your metal chelation.

    I did some co-infections testing at Igenex and I know Fry Labs does a fair bit. I'm guessing you're hoping it's covered by insurance if done at Quest. I wouldn't know.
  16. xrunner

    xrunner Senior Member

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    If I had followed your line of reasoning I'd be in wheelchair by now and probably needing care. Fortunately, I didn't.

    You probably have to accept that some people, like me, are not comfortable waiting all their life for the "perfect" diagnostic tool and the "right" meds to be found to get us well again.
    Waiting for blinded trials to sort our problems, means our chances of getting any better in our lifetime are probably zero (I hope to be proven wrong).

    Some of us just can't accept the idea of being unwell for the rest of their lives so by sheer determination and ingenuity we try and find a way out of illness.
    I believe there's always a way out, it's certainly not easy at all to find or to follow but there's always one.
  17. lizw118

    lizw118 Senior Member

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    Hi everyone
    I have been on doxycycline now for ten days for the lyme. I am feeling pretty awful on these. I wonder if this is die-off. The only symptoms which seems to have improved are the sore throat and flu-like symptoms, although I do get aches in my joints that come and go still. Otherwise I am more weak, dizzy, tired and groggy with more brain fog and inflammation, head aches, etc. now. Is this a good thing or a bad thing or what? A part of me just wants to stop the ABX and forget about this and just treat the lyme like I have already been treating the CFS with methylation and metal detox (helping my immune system). However it was the metal detox on lipoic acid which brought out these lyme symptoms recently so I am not sure what to do. Are these antibiotics really going to help? Or should I stop these? The only thing I read about ABX and lyme online are bad stories (incomplete recovery). I am terrified that I will feel even worse after I finish this course. If anyone has any advice or anything I would appreciate it.
    BTW I am taking nattokinase, g.s.e., olive leaf, artemesia and colloidal silver as well (rotating)
    Thanks
    Liz
    Ai-Yai likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Liz,

    Sorry you are suffering. I can't comment on this treatment because I don't know enough but I think you do have to be careful about not stopping the antibiotic too soon and getting resistance. I'm sure others can tell you more.

    Best wishes,
    Sushi
  19. lizw118

    lizw118 Senior Member

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    Thanks Sushi
    Yeah, it is probably an awful idea to stop it. Ugh. I'm not sure what to do!
    Liz
  20. Ecoclimber

    Ecoclimber Senior Member

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    This something you want to take seriously as in the third stage it can cause irreversible neurological damage!

    The third stage of Lyme is very much like an autoimmune disease, with the body’s immune system attacking joints, brain and nerves, said Dr. Otto Yang, professor of infectious diseases, David Geffen School of Medicine at the University of California, Los Angeles.

    “This type of damage is often irreversible,” Yang said. “These stages are very similar to those of syphilis, which is caused by a cousin of the bacteria causing Lyme disease.”

    “Just like syphilis, you can have it for years,” Nowalk said. “You give an antibiotic and you get a cure 100 percent of the time. But nobody is surprised if you end up with symptoms from syphilis for the rest of your life because it damages so many organs so dramatically. It’s the same concept with Lyme.”

    JPMorgan exec's Lyme infection spotlights need for quick treatment
    http://vitals.msnbc.msn.com/_news/2...tion-spotlights-need-for-quick-treatment?lite

    Eco
    Marlène likes this.

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