Hi Cheryl -
Ok, good to have more info.
Probiotics
Regarding the stomach pain, nausea, probiotics... Sometimes this happens due to yeast/fungal die off, which the probiotics can contribute to, so this would be considered a herx but you should be able to make some progress. If the sx continue, you might just be sensitive to the probiotic you're on and it might be a good idea to try something different. To be effective, probiotics need to be fresh, high quality and multi-strained. There are many out there - Garden of Life is my favorite (34 strains).
However, the best probiotics come from foods, which I highly recommend as long as you don't have yeast/fungal issues or significant Gi problems. Other members here can help you with those foods.
Protocol
One thing that many of us (or really, our MDs and NDs) do not-so-great is we tend to jab at different symptoms with different remedies with a not-quite holistic approach. Also, we try to do too much at once instead of incrementally and methodically introducing one component at a time so you know how it affects you.
Most of the time, we're placed on a "protocol" to see if it works rather than slowly building into a comprehensive and custom designed protocol. Usually, it doesn't work until we break it down into singular components that we implement one-by-one and then adjust before moving forward. At each step, our detox has to match our antimicrobial effort. I'm really guilty of this in the past and my LLMD also had to learn to slow down and listen to my body.
If I were you, I'd re-prioritize:
I think it's great that you're now mostly off supplements, giving your body a break, etc. Approach the next steps like you've been diagnosed for the first time and slowly explore what you think you know and remain
open to what you don't know.
For many of us, Lyme & co is the most complex to resolve and the other conditions that affect us are simpler. If you remove more of the simpler challenges, you have a much higher chance of healing your body enough that the lyme & co treatment is more effective.
1. I'd first check to be sure your diet is CLEAN - for most people (who don't have severe GI problems) this is the easiest thing to correct and streamline and it's one of the most important. EVERYTHING we orally consume has to be processed and a lot of it has to be detoxed and with everything else going on - this is something we can control.
2. I'd then implement a top notch detoxing protocol. Incorporate the things you found successful last time and make sure you have all the bases covered. There are some really good conversations here about
detoxing already - and tiredoflyme.com website has a great section on detoxing.
MTHFR and detoxing mutations
A side note about
detoxing and methylation challenges - MOST people are
heterozygous for some of these mutations, which generally means your function is reduced by 30% or so (although not always). I think this topic can be so broad and there are so many mutations one can test for (the common M677T and A1298C MTHFR mutations are only two of MANY) that it's tough to know exactly how to mitigate each mutation. Instead, a lot of us just try to support our detoxing and methylation as best we can - explore remedies when we're not overloaded.
Being
homozygous means your associated function is reduced by 60% or so, and that is something you might want to target and address.
Detox Categories
I like to try to hit the following categories in one way or another... it's not easy and takes even more time than the microbial treatment but in many ways, detoxing is more important than antimicrobial tx because your body needs to detox in more ways than just processing the treatment.
GI
Detoxing in the GI - bowel movements are probably the most important detoxing in the gut - digestion is one of our natural detoxing mechanisms and if you are constipated, all those toxins are sitting in your intestines and with any damage to the mucosal lining (leaky gut, etc.) they are likely getting reabsorbed.
- I find that pure cholestyramine, while an EXCELLENT binder, has also made me more regular than I've ever been in my entire life... ask me if you'd like more info. But it's expensive and requires a prescript
ion. Other great binders are bentonite clay and activated charcoal. If you need more fiber in your diet - psyllium husk does kind of a combo job and getting things moving and absorbing - but if you have GI sensitivities go easy on the psyllium husk.
- I've also had success with drinking an 1/2c aloe vera juice + 2 T tart cherry juice cocktail (soothing and the tart cherry is a laxative).
LYMPH
Dry brushing before a detox soak is an excellent way to help move toxins through the circulatory system and to help clear out lymph nodes. Lots of info on the web. There are also supplements that can help with blood circulation and lymph processing of the blood and toxins.
LIVER
With lyme & co tx the liver really needs support - many of us have had a lot of success with milk thistle seed + burdock root (one wasn't enough for me and I was on abx AND antivirals AND antifungals at one time - the combo worked like a charm), adequate water is essential, and a safe, gentle liver cleanse might also be a good idea if you're strong enough.
SKIN
sweating/sauna and detox soaks are the best way to take advantage of our largest detox organ - our skin - to draw toxins out of the body. Lots of methods and recipes that incorporate the following variables: foot soak vs whole-body soak, time, heat, detoxers like epsom salts and sea salt or hydrogen peroxide, essential oils). ALWAYS start slowly, changing only one variable at a time and work up to your optimal soak formula.
BRAIN
For psycho-neuro, cognitive functions I would try pinella and bur bur
- they have been really great for me. Also, keeping digestion moving helps (remember the gut-brain connections) to eliminate toxins that might be reaching the brain.
- Addressing yeast/fungal overgrowth is also critical for brain health since they can create mycotoxins (literally, ethanol and acetaldehyde) that get into the brain - causing the fog and many other sx.
3. Next I'd tackle viral loads: Take a high dose of antivirals for a month. Rx - not naturals. After a month I'd switch to naturals (Olive leaf extract, L-lysine, there are others). Then I'd re-evaluate my viral loads in the context of my other sx. If you feel like you've made good progress on virus loads, it's time to move forward (while continuing on the antivirals).
The reason I prioritize viral loads is because they can very quickly overwhelm your immune system and bring on unsurpassable exhaustion. Only when I reduced the viral load was I able to put any effort toward anything else. If your exhaustion isn't this extreme you can start w/ mold first. Also - you're not necessarily getting rid of the virus with treatment - you're suppressing it so that your immune system remains dominant.
4. Then I'd start on any yeast/fungus or mold issuesOnce you get on the antivirals and know how they are/are not working and make adjustments, you can take on mold and any y/f issue.
As long as you're not being continually exposed to mold in your physical environment (it's sometimes necessary to buy a kit to test the house, etc.), mold in the body is fairly straightforward to address. Most of mold treatment is detoxing and controlling diet. Are you familiar w/
survivngmold.com? The promotor - Dr. SHoemaker promotes cholestyramine as a great mold binder. I've found it's amazing stuff for binding everything else, too.
5. Then I'd focus on your gut health and immune systemFor others who have severe GI damage, this would come first after getting a good detox protocol in place but for you, it's more of taking care of business.
Are you digesting properly? Is your immune system functioning pretty well - or would some gut healing boost function? How is your diet? Are you eliminating well and detoxing your GI at the optimal level?
6. Then I'd re-evaluate lyme & co symptomsI'd take Jernigans' quiz and rank the infections associated w/ these sx in dominance - just to double-check what you know about
what you have.
www.healingwell.com/community/default.aspx?f=30&m=30338607. Other critters Then I'd explore protozoa or parasites. These are tough to test for - the tests just aren't that accurate or specific. No surprise here, huh? Like with so many aspects of our treatment sometimes it's easiest to just gauge your reaction to a remedy and "learn" your way through it. If you don't have a significant reaction from something, I'd try one or two more remedies - if they don't reveal anything it's time to move on.
8. Heavy metalsNow, obviously your LLMD would disagree. But I think the sequence is pretty important. The reason to understand the other issues better is to get a better handle on what is challenging you--it might actually not be heavy metals. It might be just that the prior efforts weren't coordinated enough or you weren't detoxing effectively - tough to know for sure. And if your heavy metals issue isn't as big as your LLMD things they might be (tests are not always reliable), chelating will be a little less risky and you'll still be making progress with the other protocols.
If your heavy metal load is significant, chelating can be pretty complicated and if your body doesn't cooperate, the chances of creating a bigger problem are very likely. But if you can make progress on the prior issues, your chances of making better progress with heavy metals is higher. Your body will be able to detox more effectively with less to detox because you've reduced the other loads so it can be more available to manage the heavy metals detoxing, etc.
When your protocol above is solid and you've made some progress but not enough, then it's time to look into other body system issues that are overwhelming your immune system and/or keeping you in a state of imbalance. But given your symptoms I think you'll make some progress.
I hope this is helpful but please continue posting questions and we'll get them answered.
-p