I am so sorry you are going through all this. It's overwhelming to read a summary--must be everwhelming to live it.
First, I would call his office and talk w/ an office manager or whomever you can get if the receptionist can't help you and let them know very politely that you did not receive the full two hours that you paid for and that you would like a partial refund---things like this needed adjustment to what you're billed do get overlooked, especially if the MD's schedule gets disrupted.
Generally, another option is a credit for your next appt (although I don't suggest you return to him). I think he communicated enough clues that he will simply be troubleshooting your issues and has no idea where to begin. That's actually good info and useful - doesn't make him a bad MD - just means that you'll probably need to move on to someone else.
However, one thing he said I agree with - your situation will take considerable time to unravel, and your body needs a slow and stead series of investigations. I know you won't like reading that and I spent (and wasted) the first year after my dx rejecting that reality in my own situation and I fully regret it. You cannot push your body into responding faster or more comprehensively than it is able to. And you're likely going to have to focus on one or two issues at a time.
I think it's very good that you wrote all of this out. Also, you are doing all the right things by engaging detoxing and starting some pathogen treatments on your own. Again, it's pretty important that you do one thing at a time so that your body can focus its energy and resources dealing with one thing - not spread too thin. You could really kick up a storm by trying to do too much too fast.
I have a couple of general questions just to get a better understanding for how to recommend your next steps, if you don't mind:
1. VIRAL LOAD
Are you successfully treating the EBV? In other words, are you on antiviral meds and are you currently experiencing EBV-related sx?
High viral loads can sometimes dominate everything and suck up all your immune system's resources, which makes it difficult to make progress with any treatment.
On the other hand, getting on the right antiviral at the right dose can be a VERY straightforward way to make progress--eliminating one of the dominant issues by getting it under control helps clarify what to do next and helps make the treatment more effective.
I did not do well on herbal antivirals but I know they work for some people. If you're on Rx, be sure to help your liver and kidneys process the meds with milk thistle seed and/or burdock root - test them out to make sure you don't have a sensitivity. Others with sensitivities do a liver cleanse before starting meds and repeat.
2. GI HEALTH
If your GI health is not good, it will likely be difficult for your body to properly absorb any treatment.
We've had some good conversations here on the forum about
gut health but without knowing any details for your particular issues, there are some basic healing steps that might help you: reduce your diet to liquid, pureed, or babyfood like consistencies. In fact, I used to eat babyfood-- a little expensive but no prep, easy access to variety, and small portions mean no wasted food.
Eliminate ALL sugars (no fruit at first) and ALL grains, dairy, processed food. The less your GI has to try to digest and the fewer the chemicals and risk for more harm the better.
If you feel that a mold issue is present, a fairly simple thing to do is to try a strong GI binder to help remove it from your body.
Removing yourself from a moldy environment might be more complicated but also necessary if you're to eliminate the mold issue. I swear by PURE Cholestyramine but it's expensive and requires and Rx.
Others on the forum have suggested that modified citrus pectin is as effective - I have not researched that. Some experts believe that the mold issue must be addressed before any other pathogen issue can be resolved.
Yeast/fungus often originates in the gut, can cause damage if not mitigated and can also interfere with proper digestion and treatment - many of the symptoms of y/f imbalance overlap, which makes it very difficult to navigate treatment.
Also, y/f AND the die off process as you're treating it can cause multiple neurotoxins to affect neuro-psychological sx so that might also be a source of some of your sx. Treating y/f overgrowth requires the right antifungal as well as a solid GI binder to help remove what you're killing - or the debris and leftover toxins can create the same sx as the overgrowth.
Here is a ton of info in the Y/F overgrowth post in the "New to Lyme?" thread - maybe you can engage your parents to read this and distill the main issues that address your particular situation - that leaves one less thing for you to try to manage right now:www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275
Hopefully, you can make some progress with steps 1-4 above during the waiting period before your next appt with the new LLMD. Do only one thing at a time, always start with low doses and one component at a time. Detox EVERY step of the way. It will take you a few months to work up to a comprehensive protocol.
Be sure to get copies of the test results this MD did and to take them with you to your new MD.
I wouldn't worry too much about
the coinfections testing - they are very unreliable. I would spend the time to develop detailed info about
your symptoms - I don't know if the list of questions he had you fill out is sufficient but I like this Jernigen's list - really helps pinpoint the dominant infection (and this can always change over time) and give you some idea of the infections you might be dealing with - although it's not comprehensive.
Jernigan's symptom list:www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789
Have you ever seen a Lyme-knowledgeable neurologist? That might be a little helpful although they are few and far between.
You mentioned you have an endo but what are you treating? What tests were done?
Hope that's helpful to get started. Hang in there - we're here to help as much as we can.
Post Edited (Pirouette) : 10/5/2017 11:31:34 AM (GMT-6)