After 1 year of full protocol, my LLMD admits she failed me

After following a full Buhner protocol strictly for 1 year for lyme and babesia and 4 months of bartonella as well as 1 year of strictly following a no inflammation diet (no sugar, no gluten, no dairy, no soy, no corn, and many others as per my food sensitivity panel), my LLMD admits the protocol hasn't worked since my symptoms (primarily severe insomnia) haven't improved 1 percent. I appreciate this admission since most doctors will never take this step. She said she only has two patients in her history like this but the other person hasn't strictly followed the protocols. I really believe she tried her best and did what she could but I guess my only question at this point how freaking severely screwed up can I be that I didn't improve at all?? And can't you see how just utterly disappointing this is. I think I've spent $40,000 at this point since I started about 5 years ago and no one can figure this out or help me at all.

The only silver lining to this (and part of the reason why I haven't completely given up) is I found another doctor in CT who used an energy testing VEGA machine with a cotton ball sample of mine soaked in saliva and told me my body is currently actively fighting: lyme, babesia, bartonella, ehrlichia, and chronic fatigue viruses. And he was able to determine a list of about 10 supplements that on an energetic level my body positively responded to and says these supplements will help. He also said he found through the VEGA machine that the supplements I was currently taking my body did not respond to on an energetic level. If this is true, then this is just a painful and long drawn out process to be on something for a full year only to find out the entire protocol was completely useless.

So do I now give another year of my life to this only to find out it's not working? I would have figured if anything would have worked, it would have been Buhner.

She said she checked my adrenals and said this was ok. What test should I be looking for, I want to take a look.

Molybdenum has been part of my protocol

That's really not that long for treating with herbs only. Have you ever tried ABX. My advice would be to hit Bart hard with ABX then add in Buhner's Bart herbs. Levequin and Cipro are strongest, but both carry multiple black box warnings. Rifampin or Rifabutin are also used with some success. All of the later should be paired with other ABX like minocycline or doxy and/or plaquenil. Alinia, Bactrim DS, and/or Clarithromycin have also shown some success. There's no one answer and I'm still fighting bart to some extent after almost 10 years on abx and herbals. Disulfuram (sp?) has also shown good results against Lyme persisters, Bart and Babs.

I can relate to the high cost of treatment... between Health Care Premiums, abx co-pays, and Buhner herbal tinctures you can easily hit $15k per year out of pocket.

So sorry to hear that. Many false alleyways with this stuff. Can take a lot of trial and error to find our way in the healing path. Never give up, that's my view have read a lot of inspirational patient stories, where they had to navigate so many ups/downs, blind paths that led to nothing, but eventually found the way. It helped me understand that healing was possible, but setbacks would invariably occur and sometimes be truly demoralizing (been there! many times). The key was regrouping, keep researching, keep figuring out what seemed viable things to try based on the research, patient stories I read, and how I interpreted my own disease complex and what would make the most sense for my situation based on the contextual evidence/info I came across.

MA10 said...
I know it's not popular opinion around here, but for me personally antibiotics did not work. I have seen so much more improvement with bioresonance testing and homeopathics. Sadly, after a year on that protocol, I am having to re-analyze. We're just simply not hitting the right target. I am adding herbal killers back, but am opening my mind to going back to some babesia pharmaceuticals. I doubt I will go back to antibiotics because my gut is finally somewhat healed, but if herbs and homeopathics aren't working, I have to be willing to try other things. I'm sorry that you feel you've not made improvement with your protocol. It's good to hear from a doctor that they admit fault, but it's also discouraging too. That your option didn't work out. That's where I am. My doctors have both voiced frustration at my progress in four years and one year. Don't be afraid to find a new doctor and a totally new protocol. Don't be afraid to go completely unconventional. But also don't be afraid of coming back to conventional if it doesn't work.

That's fantastic!

Imo we should be thrilled for anyone who finds success with whatever modality ends up working for them. Abx helps some people, doesn't help others (and we should be open to hearing everyone's experiences, both the good and the bad as we can potentially learn from both). I'm a believer in going with what works (which we learn by our personal trial error, empirical approaches), and what works can be quite different individual to individual (no universals with these diseases, far as I can tell, too many variables, but yes there are patterns which can help us tease out the better potential therapies for our situations). Can involve an incredible amount of trial and error, what is required are open and inquisitive minds.

Abx also carry their own issues (I say this as someone who has personally received incredible benefits from them but I also have pretty high risk tolerance given my situation). People always need to go in with eyes wide open, assess potential benefit/risk of the various modalities, and then if they don't see improvement over time need to reassess the strategy.

In my book, there is nothing wrong with not being down with abx therapy for one's own situation. These are very personal decisions.

cppoly,

I think in your post may be the clue to your problem of why you aren't getting better - Babesia. From what I have researched, some prominent doctors have mentioned that patients won't heal from Lyme and other co-infections until the Babesia is attacked first. I am just like you I can't seem to get better. However about 5 weeks ago I started hitting Babesia with Artemisia Annua and have had herxing but have also had some of the most promising steps in the right direction the last few weeks. I am going to continue to attack Babesia and worry about battling the Lyme, Ehlrichia, etc later. So if you weren't using Artemisia Annua, Cryptolepis, or Sida Acuta (all supplements that attack Babesia mentioned in Buhner's book), then you may want to consider one or some of these to attack Babesia. I had bad herxing when I started Artemisia Annua for for the first 5 to 7 days and 5 to 7 days every time I increased the dosage. However once the herx passed each time I felt better than I have in a long time.

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Post Edited (battler) : 10/8/2019 5:54:35 PM (GMT-6)

I am so sorry to hear this! If you were just taking herbs than no, I am sorry to say from my experience with this, that wouldn't be enough to get you better. That's not to say there aren't people out there that haven't gotten better using just herbs. For me, it was not.

Depending on your symptoms and their severity, something of this animal requires both drugs, herbs, diet, exercise...etc...etc. I'm currently on one abx and herbs, w/a biweekly injection protocol I just started, and that's not even enough for me.

A few things, from my experience I've learned in the Lyme disease world...is read LLMD/ND's reviews online before going to them. While I do very much believe in chronic Lyme disease. The LLMD world (like all branches of medicine) has it's share of quacks.

I don't know your provider and I admire her for admitting her failure. But 40K for herbs and no improvement concerns me you were taken advantage of.

I hope you seek second and third opinions. To me if you haven't seen some modest improvement by four mos. It's time to re-evaluate. Also, I believe a good LLMD rules out all causes of your symptoms not just Lyme.

Best wishes!