Nothing really makes me feel better...

Sometimes it takes us a while to find not only which detoxing methods help, but to see any improvements. You have tried a lot of things in a short amount of time, so it could be that you haven't given any of them enough time. You have had symptoms for 5 years, nothing will make a fast change - there is a lot of things that could be going wrong inside and it may take several months of any one thing to know if it's really helping or not.

I would suggest that you take one thing - just for the sake of this post, take detox baths. Start off slowly, and build up to the 20 minutes, or whatever you can tolerate. Do these for 2 months. If you aren't seeing much improvement - do NOT stop them, but add in other things - oil pulling, dry skin brushing and binders. Just soaking my feet isn't enough to help me, but now that I've been doing that and oil pulling, activated charcoal, liver flushes, dry skin brushing and exercising - I'm usually not too bad off.

One month of any herbal protocol isn't enough to see a difference, either. So I think you aren't giving any of it enough time to be effective - again, you've had symptoms for 5 years, nothing will help in just a matter of weeks.

Slow (and agonizing) is right… I started treatment last Feb. I feel I've taken 1 step forward. I still have nearly all my sx just at a lower volume. And my mantra is treatment in/detox out = 0. Or, in other words, as much as you're taking and doing for treatment of the infection(s) you have to do AS MUCH detox to get rid of what you're killing. For some of us, that is impossible… until the bacterial/viral/fungal load is much much less. From what I can tell with my 1+ year of research, for most of us that takes months and months if not longer—to get the upper hand on the infection(s).

And I have run into making too many changes all at once and then not being able to understand the impact of what I'm doing. It's best to make only one change at a time and the magic number seems to be 4-6 wks for something to affect you. Of course by that math it will take decades to get through treatment but I think in reality, people start to rule things out and understand their body better as they go along and it gets easier and moves more quickly as sx and meds/supps drop out.

Was the LDN a high enough dose? I started out at 1.5g and it's taken nearly a year to work up to 4.5g, which is the max dose.

The thyroid issues are quite complex and demand a professional (or a patient!) who is very well-versed in all the various influences on thyroid and it also takes a complex process of trial-and-error to find out what really needs to be supplemented.

And I also agree with the suggestion of co-infections—you didn't mention any and I cannot imagine anyone having just lyme. I know it happens but I don't think it is common.

I truly hope you get some relief. Keep at it—we will help you figure this out.

-p

Pirouette's thoughts mirror my speculations that a patient's bacterial load when starting treatment will greatly affect just when improvements might start to occur.

While more symptoms might indicate a higher level of infection, I think that might not necessarily hold true in every situation. People can have "other issues" that magnify symptoms.

If I remember correctly, utahgal, your thyroid specialist told you that you had a yeast issue. I'm wondering if it was ever resolved - especially since you are now dealing with a stubborn bout of oral thrush. What did/does your LLMD have to say about you and yeast?

I've read enough about Candida to know that it can significantly impact healing and some people actually work towards clearing their systems of yeast before starting treatment for Lyme & Co's.

Yes, just as many of us have, you have an onion that needs peeling. I think Traveler is onto something that you started to peel many layers....and I'm thinking it's possible that no layer was peeled enough to fully remove it so you now have a partially-peeled and funky-looking onion :(

Ummm...you know I'm still dealing with symptoms - many more than what I had when I started treatment. Things are better so, I guess you could say "improved" but, really? How can I say things have "improved" when I'm not even back to where I was just before starting treatment?

I fully expect to heal and, yes, it's taking a long time.

(good post cd3764)

Here's a thought:

At my first appt., my LLMD (or rather, her nurse) started treating me for a ginormous viral load while we waited for lyme & co test results… took two months to barely affect the insane fatigue, which LLMD was certain was the viral load. I slowly stopped feeling so insanely exhausted that I couldn't even take a shower. A year later, I was still on antivirals but went off them 3 wks ago to see how things would go and wouldn't you know, I'm starting to get overwhelmed with fatigue again. LLMD and I are looking for more natural antiviral methods.

Simultaneously, I pressured her to put me on antifungals. Through a great deal of trial and error with all of the natural remedies on this earth, I could not get any relief for what I was eventually realizing was a chronic systemic fungal overload. I've told the story many times here but even the antiviral Rx didn't do much until I started taking the Nystatin powder. And then things started to happen. And one by one, those symptoms started to drop out. Boy, did that make things more clearly identifiable. The main issues I had left were thyroid and lyme & co.

So after a few months, we started focusing on thyroid. LLMD and nurse admitted they couldn't offer much more advice (they kind of suggested that I was bringing more info to the table than they could) so I sought after an ND who could help. We did a whole hormone panel, which was another rabbit hole I won't go into.

So, all this to say—it's possible there is more going on and for me, it worked like a charm to compartmentalize the issues and tackle them one by one, knocking a couple things out of the way over time in order to get to the lyme & co. treatment. And, I'm sorry, but this took forever and I'm still working on it. Quite frankly, I don't think we've even cracked the surface of my lyme, Bart and Babs… and at my recent appt I was told I'm not making enough progress to increase my abx dose (I'm still at the lowest introductory dose). I was heartbroken. Still am…

And just like cd said—I fully expect to heal and yes, it's taking a long darn time. ;)

-p

Pirouette, you just described the "peeling an onion" thing very well!! Each issue creates a "layer" that has to be "peeled" away and although it usually reveals another "layer" that must be addressed, eventually you have tackled all the things that are preventing you from healing the infections that started it all.

I call it balancing out the body functions too. It's all about regaining a well functioning body so that it can tackle these infections (with help from abx or herbs).

LOL! my head hurts too! It's crazy. Doc's need to be checking for viral loads, fungal loads, and more!!

And I agree - gut health is tremendous! All of my life, I was to be so badly constipated every day that it was normal for me to go 10 days in between poo's (24 days one time)- yet there wasn't a doctor that I saw of any type - and I saw a bunch of them!!- that would tell me anything more than to use a little fiber (until I was finally seen by one Gastro doc that understood - but by then quite a bit of nerve damage had been done). When I told them I was already using fiber, they would just shrug their shoulders!!!!

Most of us here likely deal with leaky gut, yet very few know it because very few doc's are clued in. Just like there are those of us that have been saying detox is key for years (thanks Deejavu!!!), yet only about 1/2 of the LL doc's out there are only just now seeing it's importance.

It's the patients that drive the changes in protocols, and we have some pretty darned awesome 'citizen researchers' here!!!

:( Hugs to you, Utahgal. I will let you know how Hansa is next month when I come back and let you know if I suggest giving that a try ( not that I know if it is even a possibility for you or not) for you--- I hope something helps you soon.

I know I should see him at some point. The woman I see now is very good and knows her stuff. But, it couldn't hurt to get Dr. S's opinion.

Right now I am on

200 mg mino
300 rifampin
500 tindamax (soon to be upped to 1000)

I asked LLMD if she thought I had Bart and she said no. She thinks Lyme and ehrlichia. She said rifampin is good for Neurolyme. Most of my symptoms are neuro.

Utahgal—

Regarding Nystatin—if you're taking anything other than the pure powder form, it's only really good for prevention, not effective against a full-blown breakout like thrush. Please talk with your LLMD about calling in an Rx for pure Nystatin powder (1,000,000 units) to a compounding pharmacist. It's much cheaper than the other Nystatin forms and my pharmacist ships for free if you can't find a compounding pharmacy near you—not sure what your state regs are but you can check on that or just call him and he might know. If you email me I'll provide is contact info.

Also—this website had good dosing info you can share w/ your LLMD:
www.drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it

And let me know if you have any q's—

-p

Utahgal—

Regarding Nystatin—if you're taking anything other than the pure powder form, it's only really good for prevention, not effective against a full-blown breakout like thrush. Please talk with your LLMD about calling in an Rx for pure Nystatin powder (1,000,000 units) to a compounding pharmacist. It's much cheaper than the other Nystatin forms and my pharmacist ships for free if you can't find a compounding pharmacy near you—not sure what your state regs are but you can check on that or just call him and he might know. If you email me I'll provide is contact info.

Also—this website had good dosing info you can share w/ your LLMD:
www.drmyhill.co.uk/wiki/Nystatin_-_how_to_take_it

And let me know if you have any q's—

-p

No—not capsules, not liquid. It is literally a powder that they put in a little plastic jar. The liquid Nystatin actually has sugar in it. I swear the mfrs are morons.

Anyway, I tried every natural anti fungal under the sun for 6+ months and tried a strong systemic anti fungal and Nystatin capsules for another 3 months and nothing worked. I'd even started doubling my Nystatin capsules for a few weeks and got me nowhere. I will find the post I wrote awhile back about all the fillers and crap that is in all other forms of nystatin that dilutes the effectivity and may even cause problems with people.

Anyway, I stumbled upon a ND's recommendation for the powder, took it and within a day or two I had HUGE results immediately. You dump your dose into a small glass of water and then drink it—for you, you would need to swish it around your mouth first. The beauty of it is that since it is in its pure powder form, it coats your entire mouth, throat, upper GI, stomach and all throughout the alimentary canal. Nothing else can do that. Plus, it's pretty darn safe. I call it my miracle.

Yay! Merry Christmas! ;)

-p