dubious testing/treatment

There have been a couple posts just this day about the Acumen testing. Hopefully they will see this, if not you can change your topic to include the Acumen lab tests.

From my point of view and lack of finances, I would have given the herbal protocol (any one of the popular ones) a year before giving up and trying something else. I don't think 150 mg of Zith is going to do enough.
Are you taking any herbs or doing any immune support along with that?

What have you done for your treatment so far and why does your doctor suspect mitochondrial dysfunction? Is it because of the antibiotics? I'm open to all creative avenues of treatment but my general philosophy is that the organic damage is less of an issue than the active infections. I'm not saying it can't inhibit your progress via immune dysfunction and whatnot, but i might be hesitant to shell out the cash on such a test without having spent a sufficient amount of time addressing various exposures to microorganisms like home "mold", secondary infections, gut/oral/nasal microbiome health, etc. I'd also make sure i gave a go beyond simple antibiotics as well. In other words, diet, meditation, exercise, sun exposure, and herbal medicines that affect immunity and more. Holistic really does mean everything. If you're worried about your mitochondria PQQ and CoQ10 are supposed to be protective with the former supposedly being even regenerative. I don't know what you've done though or your doctors logic. So it's hard to be real helpful. I don't tend to jump on the bandwagon of mitochondrial issues being a cause of disease, but i won't say that it can't be a piece of the puzzle that needs to be put back into place to get better. Don't feel you have to do everything your LLMD says though. Glad you're here and i hope someone can be of better help. But LLMD's like all doctors are just people and not any more entitled to knowledge than the rest of us no matter how many conferences they present at (sometimes reputation actually turns me off from doctors). Follow your intuition on this one and if you haven't done all the cheaper do-it-yourself stuff above definitely get around to that first. I feel your pain on the "unproven" stuff though. I fully believe that many unproven therapies are extremely valuable. But the question of "which ones" is one of the hardest things to grapple with... Best of wishes

I already wasted thousands on UVLRx and on LDI (both did nothing for me).

The reason my dr is going the mito route is twofold...one I have anticardiolipin antibodies and she says that is a tip off. The other reason is because I was poisoned (yes, I do mean poisoned) by Levaquin 4 years ago, which apparently was the tipping point in my load of toxins that set off dormant lyme....Levaquin toxicity causes mito damage

I do have mold in my body (positve Real Time test) but I think it is from childhood exposure..no way to know for sure. I am in a rental and have wall to wall belongings (we long ago outgrew our space, but can't afford to move...so it would be almost impossible to test)

UVLRx gets mixed reviews anyway.

Don't rule out The Buhner core protocols. If you use them the way recommended by some on here that benefited, you need only start on a couple at a time, like a liver support and Japanese Knotweed. You start low dose and build up every few days and if you aren't having worse problems on it, add in one or two more.
You can take a whole month building up to suggested dosage levels.

I recommend starting off with 2 oz. size bottles so you don't waste money if you don't like it at all.
That translates to about $30-50 a month. Other herbs and supplements are going to cost more, some less. But so much less than what you've spent.

I imagine you still have a pretty good supply of herbs left. What have you got?

You can spend a whole lot more, get everything at once or in large quantities, but it's not necessary.

tks everyone...some good advice here....! You gave me some things to think about...it's easy to get caught up in the latest fad....and these dr's are great marketers! they are so convincing....win me over every time...until the treatment fails and then I'm whining about my bad experience with a particular dr.....

I do this because I am so desperate....also there is NO ONE in NYC who really knows what they are doing with this disease...which is why I traveled 7 hours to NJ yesterday (round trip ).

I could try another herbal protocol...i just hate being on my own...I prefer to have a dr guiding me and the all herbal, dr guided route doesn't exist in nyc

Your intercellular infections of cpn ,bart and myco are likely what is causing the mito problem...what ever treatment you opt for you gotta out last blood cell life and then some ..if you have proto then feeding lipids will make it worse ...have you considered bee venom therapy? Its getting my bart ,rmsf slow n steady

Ko2, I had only gliotoxin also. Does that mean its not that bad? I'm also taking mcp. Real time told me the retest is $249. Interesting ... Even if your numbers go down, does that really prove that it's not a current exposure? I mean I think if the numbers haven't changed or certainly if they go up, that might prove current exposure, but I'm not sure you could say no current exposure simply because your numbers have gone down from the treatment...

Cheryl,

Sorry about the poisoning. You received a lot of good advice on here. I would personally hold off on the expensive testing right now and focus on the herbs/supplements.

I take a product called Mitocore. I have been taking it for about four years for a different type of poisoning and healing. I don't know if it's doing anything but I did feel better when I began it.
https://www.amazon.com/Ortho-Molecular-Products-Mitocore-Capsules/dp/B003PR0CFI/ref=sr_1_1_a_it?ie=UTF8&qid=1480463217&sr=8-1&keywords=mitocore

Keep us posted with what you decide to do. We're here for you. I know it's frustrating. We all want to heal yesterday.