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Questions regarding antibiotic treatment

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Posted 5/21/2017 10:28 AM (GMT -5)
Traveler-

These guys both advertise (on their websites) that they treat Lyme disease though. Neither accept insurance so, of course, everything is out of pocket with them. Do you still think that would be the case? I really don't know what's going on, but I'm very, very frustrated. I just want to be treated adequately. Does anyone happen to know if there is some ILADS treatment guidelines somewhere online that I can print out to show these guys? Something that actually states the correct doses and protocols? I looked on the ILADS website this morning and couldn't find anything that specifically stated recommended doses.

My first LLMD does offer UV blood irridiation which is something I'm considering trying. I went in to his office weekly for about 12 weeks and did IV Vitamin C/Glutathione which didn't seem to help in terms of me feeling better (although it may have helped boost my immune system as my CD57 went from 12 to 23 and I did actually catch my first cold I've had in a long time last month. I'm wondering if anyone here has had any positive results with UV blood irritation. He also offers hyperbaric chamber which is something else I'm considering trying. I'm pretty desperate right now. sad
Posted 5/21/2017 10:59 AM (GMT -5)
Well, let's just say that I would prefer to think that they are concerned about being shut down rather than a willingness to knowingly under treat.

Here's the treatment guidelines that ILADS promotes: www.ilads.org/lyme/B_guidelines_12_17_08.pdf

You may well find that if a different LLMD will take over the prescription, that you can still use these LLMD's for their adjunct treatments, as you may find them to be helpful to you.

I do know we have had threads on both of those types of treatments. I would suggest that you do a forum search for them to see what's being said - remember though, that the newer threads will have more up to date information.
Posted 5/21/2017 11:17 AM (GMT -5)
Thanks, Traveler! Maybe if I print some of this stuff out and bring it in to show them, one or hopefully both will be open to getting me on the recommended doses finally. If not, than I guess I'm going to have to switch doctors yet again. Sigh.

Good idea on the search feature. Going to do that now! smile
Posted 5/21/2017 11:47 AM (GMT -5)
Best of luck!! And I'm hoping that they just didn't realize that they were prescribing too low of doses!! I HATE switching doctors!! LOL!

Best of luck and be sure to ask if you need help or suggestions!!
Posted 5/21/2017 12:04 PM (GMT -5)
Thanks so much, I appreciate it!

I hate switching doctors too! I can bring in pages upon pages of test results from the last year but inevitably they always seem to require even MORE tests. Testing, for some reason, causes me major anxiety. I'm always so fearful that they're doing to find something terrible that's been missed or overlooked by previous doctors. In general, I'm kinda "blah" with doctors right now. I met a mom at my kids' school who has LD and treated for close to 2 years and is now doing significantly better. She gave me the name and number of the doctor who treated her. She swears she saved her life! So I may try to get an appointment with her to see how she would go about treatment. One thing this new doctor states in his "welcome" letter he hands out to new patients is that he rarely prescribes IV antibiotics. While I'm not sure that that is something that would help me, I don't like the idea that he sounds pretty closed off to this approach. What if IV antibiotics would really benefit someone? How can he say that he doesn't usually go this route? I'd just love to find a knowlegable doctor who understands all treatment options and is willing to utilize them when necessary. Is that too much to ask? Lol
Posted 5/21/2017 12:18 PM (GMT -5)
That may be an attempt to warn patients that that doctor wishes to meet certain criteria before doing IV abx, like serious gut dysfunction. Many are using IV treatments simply because they have Neuro Lyme, believing that's the only way to heal it, which is a false belief. Many heal severe Neuro infections with oral meds or with herbs/alternative means.

I'd be willing to bet that if this doctor actually felt it was necessary for the person to have IV, that they would use it - only that they wish to reserve it for only those that truly need it.

I was seeing a doctor for my adrenals that wanted to refer me to someone doing IV meds for Lyme when I got reinfected. That was the only treatment they would do - which is so very unnecessary!! IV treatment comes along with a great many risks and potential issues, so it's not something to "just be done because", but reserved for those that really have no other options.

"I'd just love to find a knowlegable doctor who understands all treatment options and is willing to utilize them when necessary. Is that too much to ask? Lol"

Best of luck on finding that miracle doctor!! Every single doctor that I have read about has drawbacks in one way or another in the way they treat these infections. Finding one that is open to quite a few things though would be a real find!

I would encourage you to go ahead and check out this new doc, as it's highly unlikely that the other two that you have seen are really unknowingly prescribing too low of doses. I just like to hold out hope until I confront the doc usually.
Posted 5/21/2017 12:32 PM (GMT -5)
I understand what you're saying about the IV's. That isn't really something I necessarily want right now, I guess it's more about his openness to use this option should the need arise. Heck, the gal who does the IV vitamin C/Glutathione and UV Blood Irridation at my first doctor's office told me if I felt that IV antibiotics is something I feel I'd like to try, that the doctor would most likely be fine with that and she would ask him on my behalf. Just like that, if you want it, just ask. Very different from this new doctor!

The thing that sounded good about this new doctor is she does use antibiotics by apparently is very knowledgeable about herbal treatments as well. So she may be very well the one who will suit me best. I think I'm going to call tomorrow to set up an appointment. I want to have confidence in my doctor and so far in my journey I have yet to find one who gives me that.
Posted 5/21/2017 12:41 PM (GMT -5)
I do hope that this new doc will inspire your confidence!! I think that we all need to be confident in our doctors - and I have yet to find one that I can keep confidence in, which is why I'm treating on my own. When you know more than the doc, it's hard to have confidence in them, as you know!

Best of luck!!! Let us know what you find out when you call!!!
Posted 5/21/2017 1:48 PM (GMT -5)
I certainly wil!

I can understand why you decided to self treat. I think I'm getting to that point myself! If this new doctor doesn't pan out, I probably will.

Thanks again for your support. I appreciate everyone's advice/input!
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