I feel like I just need to rant for a bit. I just recently hit the 3 year anniversary since I came down with lyme. I've been treating for about 2 years now and feel like I've made no progress.
I've tried hundreds of different supplements that I've read about but nothing seems to help my symptoms.
The more I research lyme the more confused I get. It's such an unbelievably complex disease. How can I expect myself to understand it when I'm barely able to get out of bed each morning?
My doctor that I'm seeing again today told me last appointment that there wasn't much more she could do for me. I'm worried that this afternoon she's going to give up on me and I will be on my own again.
I honestly feel like I'm never going to get better.
Posted by Keebler (Member # 12673) on :
- Two top considerations are that your doctor is either:
1. pressured by the politics of this and afraid to practice as required
or 2. unable through inadequate knowledge, experience or skill.
Of course, there could be other variables but it makes me furious that you have been dropped like this. Of course, you are NOT beyond hope or beyond treatment. I think you require a better doctor to begin with and if that is not possible, somehow then a better approach to supplements.
A RIFE MACHINE might also be considered. Seriously.
Many supplements will not work at all to actually treat lyme. Most are just support. And it takes skill to know even with the assertive and direct choices, how to arrange all that and then rearrange frequently.
There are a few ILADS educated LL NDs (naturopathic doctors) yet more who think they know all about lyme / TBD but do not really.
It is absolutely possible to get better. However, it's likely still going to take a while and with a very definitive change in treatment.
When ANY doctor tells you they can do no more - that is about THEM, not you. THEY can do no better - and apparently either are tied somehow or not interested in looking to improve their skills.
You can do better / get better, though, by finding adequate medical guidance who can start by reassessing what's going on & finding a plan that offers both direct & assertive TBD treatment as well as good solid specific support. -
Posted by Keebler (Member # 12673) on :
- You say that you are " worried that this afternoon she's going to give up on me and I will be on my own again."
She's already given up on your case by what she told you already.
well, if it's not yet appointment time, I would cancel that appointment. When someone tells you it's over with them, don't go back for more. Listen to what they are saying: they can't help you. Nothing is going to change that - and it's about them, not you.
Yes, your case - all cases of lyme / TBD are very complex. Yet, still, she is voicing that SHE can't help you. If she has implied in any degree that your case is just too complex, you stand up to that, please. If she's not been vocal but you feel that way, you stand up to that, please.
She may well be a wonderful person but that's not what this is about. And being a nice person might have her holding on longer than professionally suited as she has already told you she can't help you anymore.
It's not in her toolbox. There are others who have skill better suited to your case. I am certain of it. Absolutely certain. There is another way - and other things to consider. -
Posted by Keebler (Member # 12673) on :
I cannot find it in my links set file but there is a very good thread with a title something like:
What makes a good LLMD?
[& Hint, while it's a foundation to education, even being ILADS' educated often is not always be enough. Also know that some previously excellent LL doctors may have since changed the way they practice.]
How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)
Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements. -
Posted by Keebler (Member # 12673) on :
- Find TF, for she floundered a while until she found a proper and true LLMD.
Jordan, the park ranger in the documentary, UNDER OUR SKIN, took 3 years before he felt better and another one to feel good again.
The doctor in the film who had been misdiagnosed with ALS got far better once both babesia and lyme were assertively addressed.
Of course, now with multiple political threats to adequate treatment, it can be very hard to locate a "true" LLMD or LL ND who has the freedom to practice correctly.
Still, stand up to the very fact that it is indeed possible to get better. Indeed. -
Posted by Keebler (Member # 12673) on :
- While this can get a little loud, and audience cheering is always hard, this is so worth it. Just keep your finger on the volume as it grows in intensity.
This is my very anthem. I hope you will enjoy it and find strength in it. Also, it may be required to think of a strong voice figuratively and measured but makes it no less steady. Strength can be gentle, too.
Jennifer Nettles & Kristian Bush -
Posted by TF (Member # 14183) on :
You need to find a more knowledgeable doctor. Do it right away.
Can you travel once every 6 months? If so, a top notch lyme specialist is now taking new patients. She is in Washington, D.C. but only requires in person visits once every 6 months. You can do phone appointments the other months.
It is about a 3 1/2 month wait for the first appointment, so if you are interested, let me know and jump on it. The wait is getting longer every week.
This doc was closed to new patients for at least 2 1/2 years but just recently started accepting new people again, so this is a great opportunity for you. She will not give up on you. And, you will love her.
Let me know if you want the name, her prices, and all the info on how she treats, etc. I don't think your case would be beyond her!
She is a class act and comes highly recommended by lyme disease associations, etc. She has publications with Burrascano, etc.
Posted by Keebler (Member # 12673) on :
- Glad TF posted as her information is always excellent.
You might be able to find some air transport for medical patients. Try Mercy Medical Air out of Virginia Beach, VA.
Mercy Medical -
Posted by sweetmelissa (Member # 47400) on :
I see you are from Massachusetts !! I am too ! No one in this state would help me....I get my treatment from out of state !!
Posted by AndyR (Member # 46432) on :
Keebler, I greatler appreciate all your kind words. It really means a lot. I'm in the process of researching doctors now. I think I was going through a bad herx which was making me a little more depressed than usual but I'm getting some of my hope back again.
TF, I'm going to send you a pm about more info on that doctor you mentioned!