Sep 222007
 

While Lyme, Bartonella, etc is not easy to treat there is a hope that one day I will be all better. And, I don’t think it is unreasonable to think eventually the cure will happen. Certainly, there may be some permanent damage from the lesions, but at least no more progression. One day Eriksgirl asked the Lyme Doctor how to tell the difference between someone who does get better and someone who seems to never progress. He never answered the question, and trailed off on another subject (kinda normal, which is probably why he runs so late; but we don’t know if there is an answer to that question). What I find disconcerting is that this doctor has had Lyme for quite a while, and I’m not sure he has made huge progress in his own treatment. Regardless, progress was made for me on the trip to PA, and I remain hopeful that I will be all better some day. Hopefully sooner rather than later. 😉

  9 Responses to “No Hope?”

  1. “here is a hope that one day I will be all better”

    Hope springs eternal. And although he does not want to state it, a lot of the recovery depends on the patients ‘will’ to get better. Be that through medication, determination or faith. Personally, I like to cover my bases and take all 3 into consideration.

  2. By grace alone we shall prevail.

  3. fingers eternally crossed
    (“they call them fingers, but i never see them fing.” -otto)

  4. Hello, Erik. I just happened to come upon your blog when I Googled glyconutrients and MS. I’ve had MS for many, many years, and can tell you there is real hope, if you’re ready to learn about something your doctors don’t know about (yet). I invite you to visit my website http://www.glycoassist.com. Regards,
    Eileen Gavin McKenna, Chapel Hill, NC

  5. Eileen,
    Did you read the whole post, or just the title? Good grief you have the wrong disease, and none of you seem to ever have anything to say about Lyme (maybe an untapped market?!). I’ll leave your post because it is typical of the glyco crowd, not even remotely relevant and typically self-serving.

    I also wonder if the “I just happened to come upon your blog when I Googled glyconutrients and MS” is a partial thought of and I was shocked to see Erik’s anti-glyco postings in spots 3 and 4. -and now I need to leave some pro-marking material as a comment on a non-relevant post (because that has worked so well here in the past?!).

    Maybe glyconutrients help, but I am sick of the MLM and the Guerrilla marketing norm of Mannatech associates. Secondarily, as said before, I find the name of the company offensive. Maybe someday some real, unbiased research will be done.

  6. Erik, I’m sorry I upset you. You’re right – I didn’t read your whole blog. I saw MS, and was just trying to help. I wish you the best in your quest for better health.

    For anyone who is dealing with MS or any of a host of other chronic illnesses, I strongly recommend the new book by naturopath Ann Boroch, entitled Healing Multiple Sclerosis – Diet, Detox & Nutritional Makeover for Total Recovery (2007). The edition I have makes no mention of glyconutrients or Mannatech (though I hear from the author that she’ll be including mention in the third printing). Ms. Boroch healed herself of MS over the course of four years, primarily by dealing with an underlying problem of yeast (candida) overgrowth, which can produce mycotoxins affecting various parts of the body, depending upon the individual’s particular susceptibilities. Over the course of nine or more years since, Ms. Boroch has helped hundreds of patients with MS and other ailments. For those people willing to do what it takes to conquer MS, in my view this book is a must-read.

  7. Hi Erik,

    I have been dealing with multiple diagnoses and misdiagnoses of Lyme since July of ’07. Of course I presented every clinical symptom but arthritis. I had a doozy of an EM rash, EBV like exhaustion and on and on. My PCP assured me that it was not Lyme, did not recommend I go to a specialist, and wanted to start investigating chronic fatigue and RA.

    The specialist clinically diagnosed Lyme. We ran a far more thorough set of blood tests. All came back negative except for two. A freakishly low Killer Cell count (10) and we now have visual evidence for Bartonella.

    So back on Doxy, another antibiotic, a probiotic, magnesium and vitamin D supplements for the next two months and we go back for more tests.

    What have a learned? If your body is telling you that something is not right, you are correct if you are of rational mind. The doctors can make you feel crazy. But I kept reminding myself – I saw the rash and life became different even before I though the rash was Lyme (I thought it was a weird bruise and then I started to talk about how tired I was regardless of sleep this summer).

    Now I have visual evidence that it was all real. More than that, I will go back to my PCP and show him this one little picture that proves that the rash was not something other than what I thought it was. Not to rub it in (well ok, a little bit to rub it in) but to say hey, any number of people can present oddities that do not fit the books or the insurance approved tests so do the right thing doc and get a good diagnosis.

    We asked the doc what the progress would be like now. He said, “It’s hard to know with these things as they present themselves. They did not build Rom in a day either.”

    As far as Eileen’s comments are concerned, I highly recommend anything out there in a lab or from the sap of a tree or an herb that can kill the shit that in in your system causing all of the symptoms that make life very hard some days. I want more than an assertion that a natural remedy is preferable. Without repeatable evidence that it attacks the causative agent I really could care less.

    Now if it’s something to help you suppress symptoms that’s fine. But we all know that a balanced diet with a proper caloric intake and plenty of rest and fluids along with moderate exercise do all of that for us and would reduce the inordinate amount of money we spend on snake oil and “natural cures” every year.

  8. Hi, I am an 18 year old boy from Germany. I’ve been diagnosed with MS almost 2 years ago and with Lyme like 1 year ago. I’m feeling very good at the moment, at least if you consider that I am able to lead a “normal” life although I had to use a wheelchair for like 2 months (I got into one 2 years ago practically over night because of many misdagnoses and stupid doctors).

    If anyone is still reading this blog and wants to build up contact to me, my mail is “tudirkeinenzwangan@gmail.com”. Excuse my bad english, it’s because I was born in Germany and am still living here.

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