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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Damn cats! Cats, Bartonella, XMRV and CFS

Discussion in 'Lyme Disease and Co-Infections' started by Fejal, Sep 24, 2010.

  1. Fejal

    Fejal *****

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    Every bottle of essential oil states that they are for external use only and can only be used if they are diluted with a base oil or other carrier. One I read said that it can cause permanent lung damage.

    I don't know the specifics for oregano oil but one animal research article only listed it for external use so I tend to think that it's a good idea to assume toxicity in light of the concentration. Given that there are proven drugs to kill the bug it just doesn't make sense to use it. I can see people who do as desperate due to being undiagnosed and not under the care of a physician. I doubt any MD would prescribe it internally.
     
  2. Jenny

    Jenny Senior Member

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    It sounded as if you might have been saying that all essential oils are toxic irrespective of how they are used. Many use them regularly in aromatherapy, with no ill effects.

    Oregano oil is used internally to combat viruses - if you have evidence that this is dangerous it would be helpful to know what this evidence is.

    Jenny
     
  3. Fejal

    Fejal *****

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    I don't know the purpose of discussing aromatherapy when we're talking about internal use.

    Effectiveness is questionable:

    http://sciencebasedpharmacy.wordpress.com/2009/03/27/oil-of-oregano/

    also:

     
  4. Jenny

    Jenny Senior Member

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    Fejal - I was just questioning your statement that essential oils are toxic. Some are believed to be toxic if taken internally, but not all, and I raised the issue of aromatherapy because if something is toxic you may not want to put it on your skin (and indeed some are not recommended for use in aromatherapy for this reason).

    So if we are talking about the toxicity of essential oils, it's important to say which oils, how they are used, and in what sense they are toxic. And ideally to cite evidence.

    Jenny
     
  5. Fejal

    Fejal *****

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    Jenny,

    From a risk vs. benefit analysis to be safe the best thing to do is to assume toxicity until proven otherwise especially because there are drugs which work just as well or better.

    I see your point with regards to the toxicity of aromatherapy however it is a very poor analogy given that the exposure of oral compounds is so much higher. You are really comparing apples and oranges. For this reason even if you said that oregano was proven safe for inhalation use this does not prove it is safe for oral use.

    When no evidence is available and other substitutes are available you have to play it safe. In this case there is no benefit for being a human guinea pig testing oregano oil, whether for safety or effectiveness. Also, there is no evidence that it is effective against bartonella orally.
     
  6. Jenny

    Jenny Senior Member

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    Hi Fejal

    The problem is if we assumed that something was toxic unless proved otherwise ME patients wouldn't be taking a whole load of supplements and herbs that many have said they find helpful.

    Regarding oregano oil, this is a popular treatment among those with Lyme and CpN, and there is anecdotal evidence that it is helpful. It may be toxic in certain doses but because we don't yet have any clearly effective treatments, many are willing to take the risk. We have to rely on anecdotal evidence in the main if we want to try to help ourselves.

    You mention 'bartinella'. Do you mean 'bartonella'?

    Jenny
     
  7. Fejal

    Fejal *****

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    Yes it was a typo.

    Oregano extract was the first thing I tried for CFS (without the additional apoptotic unblocking supplements). It was useless.
     
  8. Fejal

    Fejal *****

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    I have some updates. Visited a new internal medicine MD under new health insurance. Previous complimentary & alternative MD doc gave me a letter of discharge saying that he felt his office was spending too much unpaid time on my case and didn't want me around anymore! I presented a strong case for bartinella and asked the MD to take it on explaining how the infectious disease MD failed to diagnose it and failed to rule it out and local University ID department doesn't even treat it because it's an emerging illness.

    Recently realized that the mangosteen supplement wasn't helping the bartinella but rather was just exaggerating the IP symptoms, essentially making me feel worse for nothing so I'm stopping it to see how my body does just on milk thistle alone. Turmeric did exactly the same thing.

    I've done some reading on Bartinella infections and humans are chronic carriers so it is clear that even with the supplements (vit D and milk thistle) helping my immune system there's no way I can clear it on my own. I need the medication. I'm also concerned of the risk of infectious endocarditis wrecking a heart valve and transmitting bartinella in the meantime while I'm a carrier.

    At least now I know why I see squiggly bacteria in my visual field when I look at the sky. It's bartinella.

    Life sucks and it is cold out.

    Hopefully the MD will kill this thing.
     
  9. Fejal

    Fejal *****

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    I have an update on my progress. The clueless alt med quack MD I was seeing long distance gave me a notice that he was ending care about two months ago and I had 60 days to find a new one. This initially worried me but turned out to be for the best. I was able to find a new MD on a new health insurance plan. He's board certified in internal medicine but has an undergraduate degree in microbiology. I figured this would give me the best chance of getting the bartonella spp. test ordered. It took six additional weeks for him to get through my records he finally agreed with me that there is justification to order it. He's ordering an echocardiogram and the spp. three day test. I had to quit the mangosteen since it was actually making my condition worse by overactivating those immune pathways but the milk thistle has been mandatory. The best form is silphos milk thistle from swanson vitamins online. I halve the dose by transferring them into empy capsules. Each dose lasts 12 hours in this bioavailable form.

    I am really happy with how things turned out because this new MD is local, previously I was driving three hours to see the quack. Moreover, he ignored requests to send a request to my insurance company for preauthorization for the bart spp. test, causing this delay of six weeks. He bluntly told me that the reason he dismissed me as a patient was that it was costing him too much money in staff time to handle my paperwork. Avoid alt med quack MDs at all costs.
     
  10. Fejal

    Fejal *****

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    Hi again. New update. As of 2011Apr4, visited a new MD. After being strung along for four months MD ordered bartinella sp. molecular diagnostic test from Fry Labs in Scottsdale, Arizona. It was a complete waste of time and I wish someone had warned me about it here. Their test isn't amplified and I turned out to be negative but because the test has 75% false negatives you can't trust it. So I'm back to square two and have to get the Galaxy Labs test to find out for sure. I still think I have it. The alt med doc turned out to be helpful with my disability papers where the others won't. It will be a few months until I can get the new test and results.
     
  11. karynwolfe

    karynwolfe

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    You may want to check their website again, the last I heard Galaxy had temporarily stopped testing. Is testing that important? The treatment is what matters, yes?

    Have you tested with IGeneX's new FISH test? They just came out with it not too long ago, not even on the main order form when I had my tests done in October of 2010.

    I'm currently treating bart with Rifampin and Zithro.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    that pic has me confused as I have stretchmarks like that and know others with stretchmarks like this too. That pic really just looks like stretchmarks
    ..........

    Thought that I could of caught something from a cat has interested me as Ive always been a cat lover and had cats, rescued strays etc etc. I once got bitten on the breast by a cat which ended up swelling and I had to get antibiotics to treat the breast infection I got from it. So I guess it's possible I could of gotten a cat thing.
     
  13. Fejal

    Fejal *****

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    No, MDs refuse to treat without a positive test.

    The Galaxy test is the only test that has high sensitivity for it. It is patented. So yes I need it.

    Igenix can't test for anything other then the quintanas and henselae species. My symptoms match vinsonii.


    Standard bartonella protocol.

    My marks are thinner. When I first started it looked like someone clawed my back. Then it hit the abdomen.
     
  14. karynwolfe

    karynwolfe

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    Not true. Find a Lyme Literate Medical Doctor, they can treat you based on symptomology because they deal with bartonella infections every day. How else would I be getting treatment? I've had three negative tests so far. (Never gotten tested by IGeneX or Galaxy yet... And again, Galaxy is no longer doing testing.) If you want further information just ask.

    Also not true. The NEW test I was trying to mention to you tests for different species.

    "They now offer a Bartonella FISH (Fluorescent In Situ Hybridization) test which may prove useful for those people infected with Bartonella but not showing any immune-response to it as the result of a depressed immune system. A FISH test is an antigen based test, not an antibody test. IGeneX has had the Babesia FISH test available for some time and now offers a similar test for Bartonella. The new test looks for four types of Bartonella including B. vinsonii, B. berkhoffi, B. henselae, and B. quintana."


    I hope this information can prove useful to others sufferings from a bartonella or suspected bartonella infection.


    Karyn
     
  15. Fejal

    Fejal *****

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    What you said isn't totally correct. Galaxy paused their testing to do a study. Well Galaxy's test is expensive as are the "lyme literate" MDs and frankly I question their judgment after reading websites which endorse all sorts of quackery. I'd rather be in the study, get the Galaxy test for free and have my insurance cover the treatment.

    UPDATE

    Spoke to Dr. James Shaller on the phone and he said given my low body temp that it would be worthwhile to test for babesia. So I went to a new MD and had him order testing for erlichia, anaplasma and babesia. I'm satisfied that these tests plus the bart screen should be an adequate workup for my case.

    I'm thoroughly disgusted with all the MDs I've seen. Traditional MDs are too lazy to do anything that doesn't have clear cut diagnostic criteria. God forbid you are suffering from a low level parasitic infection without clear symptoms. The last guy gave me his speech about how it's an idiopathic disease and he doesn't want to be bothered. But after I explained that the infectious disease specialist insists that he do his job and confirm an organism before referring he relented. Honestly, I get the impression that these MDs are being paid bonuses on how much care they deny.

    Wow I'm right at least for Humana:

    Humana Lawsuit: Doctors Got Bonus For Denying Care
     
  16. Fejal

    Fejal *****

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    I just got the results back. Dr. Schaller was wrong, I don't have babesiosis and also was negative for anaplasma and erlichia phagocytophilium and chaffeensis. The only test left is the amplified bartonella test. I'm curious about whether I have bartonella vinsonii or kohelerae. Otherwise I can't identify this thing.
     
  17. maryb

    maryb iherb code TAK122

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    I know this is an old thread - but was wondering if Fejal was still on here? I am thinking of a Galaxy test for Bartonella.
     

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