Feel like I’m dying...LLMD has become non-responsive

I can’t remember if mold was ever mentioned, but make sure you do not have mold exposure.

So youve stopped the antibiotics?
It can take several days to recover from toxin overload (from dieoff)

Keep detoxing ... warm Epsom baths, lots and lots of water.
Do you have Alkaline seltzer gold?
Some people get relief with that.

You taking a binder?
I think it’s wise to take a break from the abx - you need to get some relief.

I have to echo that herbal antibiotics are just as heavy and powerful, if not more so than traditional ABX. I urge you to slow way down to a lot less of what you're taking, as you are herx-ing terribly. I remember having super-heavy herxes with the herbal droppers: teasel root tincture, banderol, samento (cats claw, japanese knotweed), grapefruit seed extract powder; these were all very powerful!

I had everything you describe, almost inconsolable despair, air hunger (went to ER for it, they didn't understand the "hunger" part, instead treated it as an asthma attack which it was not, still better than nothing the rescue inhaler, but that air hunger is a malarial organism, babesia usually I think, stealing the oxygen/energy from your red blood cells, or something like that). Things that counteract hypoxia may help (I briefly used Phenibut to sleep, but the withdrawal is sorta not worth it, but it does feed/facilitate hyper-oxygenation during sleep).

But I do know that feeling like one is dying and going insane at the same time, neuro(logical)-psychiatric problems. It's hard to describe what a miserable quality of life to those who haven't experienced it, but be that what it is, most of us here can relate.

Go seek comfort, watch comedies, take a benzodiazapine if appropriate. Failing that, L-Theanine is calming, Magnolia Bark extract can give comfort. I've noted that Hydroxyzine HCL can calm nerves/anxiety slightly, although it seems to make my brain fog/cognition worse.

Biofilm busters should only be done once active infection is dealt with. I tried biofilm busters like 2 years into treatment and I had to stop, it was too much. Take a beat, get to a place where you are feeling okayish and slowly add things back in. I’d hold off on the biofilm stuff for a long time though.

I actually have heard of some LLMDs treating biofilm at the end and others treating it alongside active infection. I also know of some who don't treat it directly because all bacteria - good and bad - form biofilms, so you can really harm yourself by killing all the good stuff. If you are breaking up biofilms, it seems logical to be treating with general antimicrobials as well because the microbes change form when the biofilm is disturbed and can cause symptoms, including new ones, as they settling in new and different locations. Ah, the adventurous life of a microbe!

After a good night yesterday. Tonight, severe pain in my hands, difficulty using index finger, tightness in my calf twitching in legs and pressure at the tops of my feet.
Super detox day...ASG, sauna, two Epsom baths, two gallons of water....Ugh...my body is trying to kill me.

HumanConclusion, i first was also having appointments with a supposed LLMD, certified by ILADS and so on. But after 8 appointments i started to have suspicions, first, he just gaved me a course of 2 week antibiotics on each appointment and the next one he always asked "do you feel better?", i thought for me, how should i feel better by only having courses of 2 week abx at a time and always needing to have a new appointment to continue the treatment???"
Well the problem with this doctors and perhaps some other llmd´s, while they are certified by ILADS, IS THEY STIILL BELIEVE IN IDSA/CDC guidelines and refuse to opt ILADS guidelines altough the are certified by them. But they dont tell you that. That was my suspicion. I dropped this doctor immediatelly and looked for another LLMD and this time he started me long term abx, i am on abx almost two years, and still am, i get herxes and i believe i am improving.
But the reason i am answering you, is to ask you, if you would consider trying cistus incanus herb tea. I am suggesting it, because there are SOLID studies on this herb. I tried it and i get the same herxes even without antibiotics, but as you combine it with them, even better. There are many case reports, reported by legit researchers of the sucess of the cistus results alone in LYME patients.
Dr. Dietrich Klinghardt M.D., PhD a very knows Lyme specialist has reported the effectiveness of cistus on Lyme, he even reported a case study he had himself with one of his patients who failed years of antibiotics and was healed by cistus alone.
Let me quote the report and the source from his partner site:
"Case study:
A case from my Swiss practice (Swiss BioHealth): a 29 year old woman was mostly confined to bed for the last 8 years. She was diagnosed with Lyme disease, ME, POTS and Leaky Gut, and HAD BEEN ON MULTIPLE ANTIBIOTIC REGIMES BEFORE COMING TO MY CARE. She was highly sensitive to almost anything taken orally and restricted to only 3 foods she could eat. She was depressed and her parents had run out of money unable to support her beyond her immediate needs. I started her on ½ capsule MegaSPore Biotic until her food sensitivities improved and she could expand her food choices. We increased the MegaSPore to 2 caps/day. Then we added the Stevia-sweetened Sardinian Cistus tea. At first she could only tolerate 1 tablespoon twice daily (she kept the prepared tea in the fridge), and we slowly increased the dosage.
Over a 3-month period she was able to drink the recommended 6 cups/day and reported, that with each increase of dose, symptoms she had for years “fell away” – first the nausea, then the insomnia improved and the anxiety lessened, then the brain fog lifted, then the muscle and joint pain disappeared, then she was able to walk increasingly long distances. When I saw her again 6 months later she was basically fully recovered. At that time we needed to do some psychological interventions (PK, MFT) to deal with her remaining low level depression, which responded beautifully to identifying a “systemic issue” and bringing some healing to it: her mother had lost a sister very early in her life. I have also seen beautiful outcomes in children with autism and ADHD, adults with ME, food intolerances, MS, a case of breast cancer, most patients with Lyme….

Source: https://klinghardtinstitute.com/articles/sardinian-cistus-incanus/

Of course on his site he speaks about sardinian-cistus, because his partner site sell it. But any cistus strain, especially the INCANUS = CRETICUS straing has the same effectiveness.
How do we know that this is the case and that it is not just about Dr. Klinghardt suggestion or a matter of selling this herb? Because it was studied by researchers in Europe for the effectivness in killing the growing and non-growing forms of borrelia and also that is one of the most effective biofilm destroyer. It has even heavy metal quelating properties. Let me refer you to this independent study made by researchers:
Growth inhibiting activity of volatile terpenoids from Cistus creticus L. against Borrelia burgdorferi sensu stricto (Bbss) in vitro
Source: https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0028-1084953
Notice it says in vitro because they have done the tests on tubes with extraodinary results. But the most interesting information on this study is this one and it is apart from the in vitro tests they done, in fact, the researchers were motivated to done this study because of that, what? In the abstract you can read this:
"In recent years borreliosis patients from Saxonian self-help groups have reported significant relief from their sufferings after ingestion of tea infusions from Cistus creticus L"
This was one of the main reasons why they made the research. Also there a lot of more studies, but i tought this one would be the most important since they report success from real people, not only on the tube.
I am my self taking it and sometime i need to stop the tea, because it is to strong on herxes, so i started with one cup a day. I suggest you try it, you have nothing to lose, plus this is a tea with relaxing properties does not cause insomnia like many teas and herbs do. I hope you get well.

Post Edited (isitlyme) : 1/12/2020 1:46:17 PM (GMT-7)

Mold causes a vast array of neurological symptoms! Zaps, twitching, buzzing, anxiety, insomnia, headaches, vertigo, panic, paresthesias, numbness, nerve pain, brain fog.... And a basement with water issues definitely is growing mold. Check out Neil Nathan's Toxic or the Paradigm Change website or survivingmold.com for more information about this. Also innumerable past threads on this forum. Glad to hear you already have a plan to move, as the first step in treating mycotoxin illness is stopping the exposure. In the mean time, perhaps a low dose of a binder (away from supplements and food) and an advanced air purifier that filters down to 0.01 microns (needs to trap the mycotoxins, not just mold spores). If you are curious how much mold is in your living space, then do an ERMI dust sample from Mycometrics. If you want to know how many mycotoxins are in your body and which ones they are, then do a urine test from Great Plains.

I hear you about funeral planning. One day you will be stunned by how much more you understand about life and death and what matters, because you had this experience at this age. This is not the end for you. This is AWFUL but it's temporary.

And a hearty "amen" to the statement that a lot of LLMDs throw stuff at the wall to see what sticks. Only they don't decide what sticks, we have to figure that out. And they tell us to take more and more things when sometimes what we need is fewer things. Unfortunately there's not a lot of research about this stuff, and a lot of evidence is anecdotal. They can't just flip through a prestigious journal and find peer-reviewed, double-blind, responsibly-done, well-funded studies about all the myriad treatments for Lyme and co-infections. So we have to be active participants in our treatment, like you are doing. And when we are too zonked out to research or think critically, then we reach out to each other!

You will get through this terrible time.

Buhner works for some, Cowden too. I don’t respond as much to Buhners. I’ve tried some of Cowdens herbs and the one I respond to the most is banderol. I’ve heard that some people react poorly to banderol but I’ve heard a lot that have shown improvement. It’s super strong so people should increase very slowly. One guy on this feed appeared to have a crisis because is started too high.

Binders can bind to toxins (including mycotoxins from mold and the endotoxins of bacterial die-off) and move them out of your system so that they're not floating around causing more inflammation and symptoms. They bind to everything, though, so you have to take them away from food, meds, herbs, and other supplements. Start slowly, and do whatever it takes to make sure you poop at least once per day while you are taking them; binders can be constipating, and the last thing an overloaded person needs is to hang onto things in our most important detox pathway.

Binders include activated charcoal, bentonite clay, chlorella, okra, modified citrus pectin, and cholestyramine (rx and probably the most intense).

When reading through your post on what you were taking I actually thought for a second you might be trolling us, that is wayyy to much.

I think first and foremost you need to try to relax, as hard as it is. Trust everyone when they tell you this isn’t ALS, because it’s not. Then you need to detox, get your symptoms down for a few days and start getting some sleep. Then most importantly you need to find an LLMD to work with. What area of the country do you live in?

Once the symptoms are down, until you find an LLMD, I do think because this is early days you do need to keep up treatment. But keep it simple. My guess is the rifampin is too much. I think the doxy plus buhner herbs and a couple antioxidants for detox should cover a basic protocol for now, but I’m sure some of the guys more experienced with beginner treatment (I didn’t catch mine til late stage) can craft a regimen?

Thank you walkingbyfaith. I have no intention of disposing of anything paid WAY too much for everything.
Dcd, thanks. I assure you it’s all true sadly. I still worry about ALS, it’s so hard not to when you have all the neurological symptoms and then your thumbs and finger start acting up. However, I’m pressing ahead with detox and then will follow your counsel.
Today’s new issue (in addition to worsening hand and finger weakness) is pale greenish loose stool last night and this morning. A new thing to worry about. It never ends.