Frustrated with Lyme

I came to this website a couple months ago, met many nice people, especially Traveler, who has been so kind to me with information and friendship. Never in a million years would I have ever thought this was Lyme. Unfortunately, I am coming into this with a couple pre existing conditions, which are very painful. I was told that Lyme can make existing conditions even worse. Well, I was excited when I found a ILAD doctor in my area. I made the appointment after I tested positive for one band of Lyme from a Quest lab test. I have been gathering all my testing information to send to this doctor for this mid August appointment. One thing I was interested in was helping relieve me of all this pain. Then, I found out this Naturapath" or however you spell it, basically only uses natural meds and suppliments. I have found from many of you, this is a way of life. A way of life, sorry, that I am not ready to just cross over to. Oh, I do see the benefit, honest I do. And I am willing to try stuff, but when it comes to major pain, I am just tired of suffering, give me something that freaking works. So yesterday I called this Lyme doctor because this appointment and everything involved is VERY expensive, but I figured if she could help me with the pain management along with getting this Lyme out of my body, it would be so awesome. But I had to point blank ask the question about the "elephant in the room" at least for me. I was told that this doctor rarely ever gives pharmacuticals, but finds the source of the pain and treats that. ***? I tried the oil of Oregano, or Natures Antibiotic which many of you folks with Lyme take in place of antibiotics and felt like I was going to die, I was in so much pain and the bakers cysts in my knee was so very large I could barely walk. I guess I am supposed to just pay this doctor large amounts of money, buy all her suppliments and JUST SUFFER through it. To that I say, "Oh hell no." Obviously, that is her intentions for me. So although I did not cancel the appointment while speaking with the receptionist, I probably will as she already has my credit card number, something I found to be strange as I have NEVER given financial information PRIOR to any doctor appointment. (Which only strengthens my opinion that by getting paid large amounts CASH plus having her own suppliments, which we all know are expensive, right in her office, a financial motive for her, BONANZA if you will)

At this point, I have one other option, I guess and thats to follow this course of treatment ON MY OWN. I know its out there, as Traveler sent me a link once, but I didnt read it as there are so many natural meds that I have never even heard of. I still cannot wrap my head around this. I am a very intelligent person, but am treading in uncharted area's here. Last time I took the pain management aspect of my life into my own hands, I ended up with an ulcer, so I see how medical things left up to me goes terribly wrong.

Im sorry, but all of this came about yesterday and I just cried my eyes out as i truly thought this was going to have a happy ending here. Isnt it always that way, put your faith in something you hope will work to give you a better life and something always goes wrong.

I guess it depends on how you look at the situation..... At least you figured out this doc is in it for the $$$..... I went to a doc (not for LD), it took me 4 years to figure it out! She did help some, I can't be too negative anymore...but, yeah, her own line of supplements and she did have beautiful clothes...so...!

Let me encourage you though, like girlie said, that you can do this on your own. You need a good treatment with clear suggestions like the one I'm on. I've made a lot of progress with just a couple of symptoms left....and I was dx with ms 14 years ago, so I've been infected a very long time.

Let me know if you have any specific questions:)

My situation was similar to yours so I do understand. I got infected 3 months post major shoulder surgery on my left shoulder. I have severe nerve damage on my left side from degenerative cervical spine damage that went undiagnosed for well over a decade. My first spinal fusion failed and that wasn't discovered for just under 3 years. That means my upper back muscles supported my head for about 15 years. I have thoracic outlet syndrome in addition to a crappy spine so if I lift my arms equal to or above my shoulders I cut off the nerves and blood supply to them. That's caused both shoulders to tear as if I was a pro pitcher.

Like you I was desperately searching for what the heck was wrong and patience or calm didn't exist. When I felt well enough to be proactive I needed to results to be positive and appear to be promising.

Treating the Lyme helped treat the pain. It's very hard to distinguish the existing pain from the additional pain caused by the Lyme. I was told by Stanford's pain team that I would always need to be on some form of pain med. After the first 7 months of Lyme treatment I weened off of all pain meds. If you only band aid the issue the pain that Lyme causes will increase. Lyme seems to go to our vulnerable spots and increase the inflammation.

LLND's in California can write prescriptions. That's not true for all states. The federal restrictions on prescriptions on narcotics changed at the beginning of 2015. They got much more restrictive. A PCP can no longer write a scrip for a controlled substance. I do believe at this point you need to not only find an LLMD who you are comfortable with but also a pain specialist who is covered by your insurance. When you see the pain specialist don't mention the Lyme. Just discuss the issues with your knees.

Hang in there it does get better,
Janet