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Any opinions on Sponaugle Wellness Institute for Lyme treatment ?

Discussion in 'Lyme Disease and Co-Infections' started by beaverfury, May 14, 2014.

  1. beaverfury

    beaverfury beaverfury

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    They have a load of glowing testimonials on youtube

    And some here..
    http://www.healingwell.com/community/default.aspx?f=30&m=2736426
    'This is not for everyone but it seems to work for a lot of people. They have about a 9% failure or relapse rate which is pretty impressive for the over 12,000+ patients that have walked through those doors. While there I saw many people who were wheeled in and were on their last leg with things like organ failure in addition to lyme and mold and the rest of it.'

    http://sponauglewellness.com/wellness-programs/lyme-disease/
     
  2. Ema

    Ema Senior Member

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    I think that this is where the Real Housewife of BH, Yolanda Foster, went for at least part of her Lyme treatment.

    She is wealthy enough to go anywhere she wanted so...that says something. Whether or not it says that their methods work well for everyone, I'm not sure.

    It's an investment for sure though. I think you have to live in the area for a few months and get regular IVs.
     
  3. Esther12

    Esther12 Senior Member

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    Personally, I'd be cautious.

    Just glanced at the website, but some stuff looked dodgy, eg:

     
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  4. beaverfury

    beaverfury beaverfury

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    They sound a bit dodge, using terms like 'mold gene', 'A-5 nucleus' (?), very vague neurological talk and even vaguer explanation of treatment. Yet, they seem to have many satisfied customers. I can't figure it out.
     
  5. beaverfury

    beaverfury beaverfury

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    Ha ha , you beat me to it!
     
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  6. Ema

    Ema Senior Member

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    Well, mold gene probably just refers to the HLA genes which are pretty widely accepted at this point. Most LLMDs test for the HLA panel i.e. Shoemaker, Horowitz etc.

    A5 nucleus just seems to refer to a group of cells in the brain that primarily produce NE.

    I wouldn't expect a marketing video on their website to get into detailed treatment protocols. I would expect them to "dumb it down" for a general audience.

    It honestly doesn't sound like he is doing a lot that most good LLMDs aren't already doing - just possibly slightly more aggressively. He certainly isn't following the IDSA recommendations though so in some people's minds, that will make anything he does do dodgy.

    I personally like his focus on biofilms because I think that is an important component that is often overlooked in many treatment protocols.

    Now that I think about it, I emailed them about a statement they made on their website a while ago...I wanted a reference for it. No one ever got back to me (which isn't such a good sign to me). I will have to go back and see if I can find what that was...
     
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  7. Valentijn

    Valentijn WE ARE KINA

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    They obviously cherry-pick positive results to show on their page. And even in their before-and-after photos, most of the "afters" still have the exhausted look around their eyes.

    I guess it would depend on the treatment someone wants. They obviously don't like antibiotics there, but talk about toxicity, anxiety, depression, and "treating the brain". Sounds like a pile of BS to me, but I'm sure some people will want that approach.
     
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  8. beaverfury

    beaverfury beaverfury

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    Do you know if this HLA gene is searchable on 23andMe, Ema ? They quote it as HLA-DRBQ.


    Ah, i found it A-5 nucleus. Neurons located in the nucleus raphe magnus. http://www.ncbi.nlm.nih.gov/pubmed/3754780
     
  9. Ema

    Ema Senior Member

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  10. Ema

    Ema Senior Member

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    Honestly, I think some people will get better *anywhere* and I don't blame them for cherry picking their patients for their marketing website. I hardly advertise my mistakes on my website and that doesn't mean I'm crap at my job or some sort of flake (or was anyway...)

    Personally, I have a lot of interest in neurotransmitters and treating my brain, especially my mitochondria in my hypothalamus and reducing inflammation. I believe this would also lead to improvement in hormone levels which would improve anxiety and depression as well as any other number of symptoms. Increasing NE could help with OI, for example. So I don't have any issue with that either or consider it BS. There's a lot in the scientific literature on that very topic.

    I'd say it's probably about 50/50 whether or not one would improve with their approach and I think you could do a lot of it for a lot less money if you were willing to put in the time to research on your own. But if you have the money and don't mind taking a shot, I don't think they are necessarily any better or worse than any other approach we have at this point.
     
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  11. Valentijn

    Valentijn WE ARE KINA

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    @Ema - My dislike with his "brain" claims comes more from the sloppy way the terminology is used. Either he assumes some of his potential clients are morons who can't figure out what "neurological" means, or he's deliberately being vague. I don't care for either explanation :p
     
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  12. Sushi

    Sushi Senior Member Albuquerque

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    As I remember, they actually do use antibiotics as a main treatment--at a much higher price than elsewhere. Yolanda Foster did go there but she went a number of places and still needed treatment after being at this clinic. I did some deeper searching on this clinic a while back and there are a lot of negative reports too.

    Sushi
     
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  13. peggy-sue

    peggy-sue

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    @Ema , you said; "Increasing NE could help with OI, for example."

    Is that the case?
    I ask, because my OI got an awful lot worse on amitriptyline.
    (which increases adrenalin rather than noradrenalin) according to my GP.

    So I asked about another kind, imipramine, and he told me that that increases the noradrenalin, and the side effects I was getting (drastically more OI) were noradrenlin effects. so it would be even worse than the amitriptyline.
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    Strattera worked for me--it took away OI entirely. But it only works for a percentage of patients. It is a norep reuptake inhibitor. I had to start with 1/3 of the lowest dose capsule, every other day or third day, and slowly increase it in order to tolerate it initially.

    Sushi
     
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  15. Valentijn

    Valentijn WE ARE KINA

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    Amitriptyline was horrible for me too. I only took it for two days. But I have low norepephrine, and an NRI was very helpful for my OI.
     
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  16. peggy-sue

    peggy-sue

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    I wasn't measured for anything at the time. Just given the prescribed "low dose amitriptyline to help sleep".
    I don't trust what my gp says anyway, (that's why I was checking)
    He told me that a haemoglobin and a haematocrit were "the same things anyway".

    Given I've performed both tests when working in labs, my BS radar was pinging madly.
    I have a very highly sensitive BS radar.
    (And absolutely no gaydar at all.:p)
     
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  17. Soundthealarm21

    Soundthealarm21 Senior Member

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    I'm pretty sure 6 weeks out there is somewhere in the range of $18,000. One of my doctors said that he is very smart, but she did not recommend going and I do not remember the reason.
     
  18. Wayne

    Wayne Senior Member

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    I've been researching Sponaugle and his clinic, and for the most part like what he has to say. In this video, at the 18:00 minute mark, he gives a pretty good description of what he feels is going on in the brain with Lyme patients. Seemed to match up well with my own cognitive deficiences resulting from my Lyme infection.

     
  19. Aerose91

    Aerose91 Senior Member

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    It is sort of but not as precisely as the Shoemaker test. If you input 23andme results into MTHFR Support you will get a read out for HLA rs7775228 and HLA rs2155219. My Shoemaker test came out the same- heterozygous for the DRBQ gene
     
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  20. Always Hope

    Always Hope

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    This place is a fraud. If any patient is cured, it would be accidental. I was there and sicker than when I went. The testimonials are coerced and reviews are written by the clinic's friends & relatives, not by patients. Don't go.
     
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