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Okay, my daughter who is 12 has been seeing a LLMD …2 visits so far. We did our initial trip there and he felt she has lyme. He did order a western blot, even though she was on antibiotics and steroids for sinus infection and asthma. Her blot came back as a IND on 41. She has the full complex of symptoms…in my mind I cannot believe it isn’t lyme. So, she takes single antibiotics (like only one at a time for a month each) for 4 months. She rotated from the doxy (he ordered that alternating each week with amox since she still has molars coming in and didn’t want to affect her teeth), to Ceftin, to Zithromax, to Flagyl. We have not seen any significant improvement in her health. Some days can be better than others, but it is really not improved overall. So when we see him at his office, he looks at the blot results and asks if she is better with the antibiotics. We told him no, not really. He said that she should have had improvement so he thinks it isn’t lyme. Correct me, please, if I am wrong, but I am under the impression that Lyme is a symptom based disease and cannot be ruled out due to labs. Also, the ILADs way to treat Lyme is NOT with single antibiotics, it is with multiple AB so they can kill spirochetes at all stages of development. In talking with many others with lyme, not only do her symptoms are identical or very close to many other people with lyme. No one has told me that they saw really any progress in symptoms until well after 4 months. I have talked to quite a few people with lyme. So, in reality, how could a doctor expect someone with lyme to improve in 4 months with SINGLE Antibiotics being given? I am overwhelmed with how she feels, day in, day out. She cries and asks me if she will ever feel better. I was cool with the dr because I need allies not enemies in the fight. He drew another Western Blot (he sends them to the right lab in Cali) and this time she went off antibiotics for 2 weeks like she is supposed to before it was drawn. Results are not back, but if they come back negative, I am pretty sure he will no longer see my daughter. He pretty much said don’t make a follow up until we see, and ordered some hormone labs to draw, as well as 2 RX routines for 40 days each for treating possible babesia and bartonella…although he thinks if she had those the month of flagyl would have taken care of them. The more I think about things re: this, the more I realized that I think he is avoiding having any legal backlash by not treating anyone without a positive western blot…basically “covering his butt” from legal ramifications. That is all i can figure for the complete turn around. He didn’t even give her anymore antibiotics specifically for lyme because he is basically pretty sure she doesn’t have it, so he felt there was no point in it. We were in and out of the office in 1/2 hour or so. I am deeply hurt by his response because I cannot believe we aren;t dealing with lyme. I have researched disease and symptoms for hours upon hours. I have talked with many people with a lot of lyme experience and diagnoses of lyme. I am a nurse, and I don’t go blindly into things, I do my background work and learn as much as I can about anything that is affecting my family. I certainly would rather have my daughter well than to have LYME but with the multisystem symptoms she has been having and the way things have progressed, I think there is not any chance that it isn’t lyme. We already have had an appt with a more local LLMD, but she is booked until August. I made the appt before we even saw our doctor a 2nd time. I already planned to change over anyway, but now he has me in a tailspin worrying and feeling rejected from help…like we have felt for 3 1/2 years + already. Don’t need anymore disappointment with the medical community…have had way too many bad experiences and misinformation from enough doctors that I am just so done with them. Has anyone experienced anything like this with a LLMD? What would your next step be? I know I am seeking only personal opinions and not medical advise, but personal opinions help so much as I process all of this crazy stuff. I appreciate any and all of your thoughts in regard to this. Thanks, Julie
daughter with Lyme (maybe) x 4 years, did 4 months of single meds, Previous diagnoses of fibro and chronic fatigue.
Have you ever thought of taking her to a live blood analyst to see what else is there? at least then you have a bit of an idea
My lyme did eventually show but not until I was at my wits end. you need an analyst who can identify all the bacteria also. they don’t all do that.
I know I could not have improved either just on one antibiotic at a time. I did have that for a while and although i knew there was a bit of a difference, I now understand why you do not improve until you hit the lot. You need to treat all the infections. Few Docs would prescribe what I am taking though. I have to take them all every day but I am not 12 yrs old and not sure how she would stand up to it. maz might have some idea when she logs in what is the best thing to do. I think you need to prepare yourself for finding another LLD if that is what you want. Do any GP’s presribe where you are or holistic Docs. Holistic Doctors are pretty good at getting to the bottom of bacteria problems but costly/
Its such a worry for you poor darling. Just keep reassuring her it may take time, you are doing your best.
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