OK – here are some initial thoughts:
DAGNOSESWe have some similar challenges compared to when I started out lyme & co treatment. I was one sick puppy (I also had at least 4 reactivated/high levels of viruses so at least you don’t have these—that you know of).
One huge piece of advice for you is to break things down and compartmentalize cause/effect/response. You cannot do it all and your brain is not really a computer so it’s just too much all at once. It’s stressful and probably not real effective, either. I think you might have better luck with a “ratcheting” forward approach where you make some good progress w/ healing your gut, then focus a little on reducing microbial load, then advancing the whole body systems so they can be of more support, then increasing the microbial treatment—something like that. You will eventually find your unique rhythm.
Also—you might not understand what I mean by this except in retrospect after you’ve made some progress. But it’s kind of easy to let the parasites and yeast/fungus/mold… “get into your head” and it’s easy to start to be paranoid about
them and attribute things to them and sense things that aren’t really there… this, by no means, is to suggest that what you’re feeling isn’t real but let’s just say, for now, that this illness can mess with your head into over-interpreting every single sensation in your body.
Plus, we’re so desperately trying to figure out what is wrong with us so were trying to be aware and diligent. My advice about
that is to breathe… and to hold faith that when you exit on the other side of this former life you had—you will see it all with refreshing clarity.
This is how I would group your “conditions” due to priority and similarity and it might help to view an approach toward solutions this way, too:
Group 1
GI issues/leaky gut/SIBO
Histamine sensitivity???
Bacteria issues???
Group 2
Yeast/fungus/mold
Chemical sensitivities
Group 3
Microbial infections (lyme, bart, babs, FL1953)
Group 4
Adrenal/thyroid (not sure if you have these issues but they go hand-in-hand with GI issues and lyme & co)?
Group 5
Biofilms
Devices inserted by alien abductions
I would focus mainly on groups 1 & 2 right now. Make some progress, then introduce some treatment for group 3 and circle back to groups 1 & 2. Kind of like ratcheting up the ladder of recovery.
- Groups 1 & 2 can cause problems with absorbing/processing food and meds/supps and can overburden your immune system. Nothing else is more important right now.
- Groups 1 & 2 cause similar symptoms and the symptoms can also over lap w/ group 3.
- Addressing the y/f/m can help lessen the burden on your GI and immune system, which will help anything that follows tremendously.
- Additionally, chemical sensitivities can be triggered from y/f/m. So that’s also killing that bird with the same stone.
- And diets for groups 1 & 2 are similar.
- Group 4 can occur simply when Gi is imbalanced—the hypothalamus/pituitary/adrenal axis (HPA) works in sync w/ digestion and neurotransmitters to control So SO SO many of our body functions.
I also added a couple of other issues to explore –
- I think you’re right to suspect a histamine sensitivity with your reaction to the GoL probiotic and some food reactions you listed in your symptoms section, which can exacerbate the leaky gut and cause your immune system to really interfere.
- And your reaction to Betain HCL also makes me suspect you have some gut bacteria that shouldn’t be there… I had the most horrible reaction to just a couple of capsules – thought the HCL batch I had was bad, called the company, customer service was so awesome and suggested that if it was killing bacteria/protozoa in the gut it can cause a nasty herx… I was so excited by that because it confirmed what I had suspected was causing GI problems that we couldn’t get to show up on tests. Low acid can occur for many reasons and not only does this really interfere with digestion, but acids also help control yeast/fungus/bacterial/protozoa, etc. And of course these microbes make GI issues that much worse.
PROTOCOLSSo – you’ve tried a lot of approaches… it’s really tough to know what is working, what isn’t if you have GI issues because of absorption and leaky gut problems. Also, like me when I started, I think a lot of people don’t give protocols enough time to work, do too much at once so it’s hard to know what is causing/addressing what, etc.
RECALIBRATESo, don’t toss out everything you’ve learned, but entertain this suggestion of recalibrating and starting over, kinda. So many people have problems w/ ANY treatment because of GI issues—when there is little wrong with the treatment and everything wrong with the vessel used to administer the tx (the gut since almost everything we do is done orally).
PRIORITIESFirst priority is to heal your gut. Healing your gut goes a long way towards boosting your immune system. This involves healing the lining and also addressing that which is damaging it. This takes awhile but hopefully you’ll start to have fewer issues with food as you go, and you’ll gain more from foods/meds/supps as you go and as your gut heals more.
Then you’ll be more “ready” for lyme & co treatment. Some people have GI issues they think are caused by lyme & co – but I still think for most people, spending a little time trying to heal the gut will be beneficial and then once you’ve made a little progress, your antimicrobial protocol will be that much more effective.
DIETA regular diet is your reward after you make progress w/ lyme & co (which is like, step 4---it’s gonna happen but it’s way out there right now). So whenever you get discouraged that you’re in “denial mode”, think about
how happy you will be to do more normal things once you’re past all this. A reward of sorts.
Although, you will likely have to maintain some improvements—like keeping sugar and high carb in take low and making sure you really protect your gut. So think of some of the changes as not a diet but a new way to feed yourself that your body will reward you for.
Histamine response
Your diet looks good (I know it’s not a lot of variety right now but it’s better than mine was when I couldn’t eat solid food for a year!) – you might want to cross check everything with histamine response-triggering foods. Most ways people have of controlling histamine reaction is by control triggers, which are mainly foods.
leaky gut
With leaky gut, you’re in such a very difficult situation because you’ll eventually develop issues with every food you eat—even the good ones. But you have to eat and some reactions are not as bad as others, meaning some foods are still OK to eat even when antibodies show up high on the tests.
The wider variety of veggies you can find the better, but it’s more critical to do other things to heal the gut right now. Legumes are a good source of protein but can be difficult for us to digest—I still react to beans. Brown rice should be OK in small doses.
If you can find a good, inexpensive nutritionist to help you out with this, the better. Eventually, you can graduate to different foods but the simpler the better right now.
Soothe
And now I’m going to suggest that you try not eating solid food for awhile! Maybe a couple weeks, if you can or maybe do this for all but one meal—maybe eat regular bkfst and then liquid lunch & dinner so that your body doesn’t have to work so hard at night.
Try veggie smoothies, soups and purreed veggies for awhile. No raw veggies for now—the raw fiber is to hard to digest. Due to my methylation problems, I couldn’t tolerate high quantities of anything, including veggies so I would have horrible diarrhea with juicing. But I broke it down into very small, frequent doses and I was fine. Bone broth, chicken broth, vegetable broths, miso… drink aloe vera juice, and try looking for GI repair support.
Incorporate omega 3 fish oil—only if you can afford the really top quality salmon oil (vital choice is an excellent source but it’s not cheap). Flax seed oil in small doses, and coconut oil with everything – add it to tea, soups, eat raw. So no the fats might not be optimal for biofilm but first things first – let’s heal the mucosal lining.
Sounds silly but snack slowly, chew carefully, savor the moment, meditate, think of food as your healer—not the enemy (which sounds odd but when you develop so many issues with food like we have, it’s easy to grow contempt and this isn’t good for you).
Move
“Slow digestion” – this can cause so many problems. First, instead of full, infrequent meals, snack all day. Try eating something small at least every 2 hrs. Lot’s of liquids and slimy stuff. Split up the aloe vera to 2 tablespoons every other snack or something like that. I like adding a little tart cherry juice (1 tablespoon—it’s high in sugar) to the aloe vera juice, which helps with constipation. But the best remedy I’ve found is pure cholestyramine—it’s a little expensive but it’s the best binder out there and will definitely help w/ keeping you regular. Don’t bother with the manufactured versions (like welchol).
You want to keep everything you eat moving through your body so this is where binders are essential. But go very easy on any fiber—save psyllium husk for another time. Try sprouted chia seeds—they are like digesting happy little jelly fish so easy on the mucosal lining but they also help move fecal matter. The best vehicle for delivery is to plump them up with a fruit puree/juice but not for you. Instead, try mint + water, cinnamon + coconut milk, cocoa + almond milk, pureed cucumber + lemon oil. You get the idea.
DETOXDetoxing is key, of course but for those with GI issues, it’s even more important because of all the gut/brain connections and challenges to stay regular, which otherwise holds in more toxins. So, you need to use all methods – binders to move toxins out of the gut, dry brushing to move toxins through the circulation and in/out of nodes, sweating and baths to draw toxins out of the skin—it’s the largest organ – use it! And other support for liver, etc.
You haven’t mentioned you have concern about
heavy metals and from your sx it doesn’t sound like that is a predominant issue, if you do. So please hold off chlorella and cilantro for now—if you’re not ready for it, these products can leach heavy metals that get reabsorbed if not done properly. You have enough on your plate right now.
PROBIOTICI like the idea of rotating probiotics. I’m not familiar with PA but I know you need much more than just S. Boulardii. You need the max amount of strains as possible – and Garden of Life has the most strains of any probiotic that I’ve found—but anyone please correct me if I’m wrong about
this).
Another idea regarding your reaction to GoL is that a high dose of good bacteria is likely killing off some yeast/fungus so that might be the reason why you had a reaction to it (you didn’t describe the reaction so this is a guess. I always had some die off response).
Make sure you arrange your schedule so that probiotics are the last thing you take before bedtime so that GI body has a chance to get the most benefit from it.
BOOSTING IMMUNE SYSTEMAgain, healing your gut is step 1. There are also several immune-boosting herbal remedies for your gut, which can help it get ready to attack. You might also consider doing some testing to discover how well it is functioning and in which ways. This will help you target your support.
ATTACK FOCUS #1 - Y/FOLet’s see how far you get with exploring a histamine issue and if that might affect some of your symptoms that also sound a little like Y/FO. I was about
to list which one of your sx suggest yeast/fungal overgrowth but realized that it’s most of your sx. So, I think this is strong enough indication that you need to ramp up Y/FO protocol.
I’m not wild about
pulsing antifungals. From everything I’ve read, if you have a significant overgrowth you need to hit Y/FO hard and fast and consistently and pulsing almost ensures resistance.
I think MDs pulse to help out the liver—but there are better ways to do this (milk thistle seed, burdock root---I needed both), liver flushes. And many people don’t need systemic antifungals. But it seems like you’re on Ketoconazole full-time? Definitely try out the pure nystatin powder, which will help bypass absorption/susceptibility/resistance problems that might be occurring w/ the diflucan and ketoconaszole and treat the mucosal lining “topically” from the inside…
The natural antifungal blends are best used for a “twice a year” cleansing approach, really. They have so many ingredients (that are good to hit everything since you usually don’t know exactly what y/f strains you have and what is susceptible to what antifungal.) But y/f can grow resistant to natural antifungals and they should be used only 2 at a time (so you don’t run out) and rotated every couple of weeks. The blends don’t lend themselves to consistent use.
ATTACK FOCUS #2 - MOLDImplementing a good binder like cholestyramine will be helpful for the mold but I would get familiar with other remedies (check out Dr Shoemaker’s site
survivingmold.com and/or post for input about
this—I’m not currently treating for mold so don’t have much to offer other than the investigation I did. Solving mold and Y/FO will likely solve most of your chemical sensitivity symptoms.
But please know that you really need to figure out how bad your environment is in perpetuating a mold sensitivity. You have a huge road block in treatment if you can’t control whatever mold is entering your body from your environment. And many experts suggest you’re not going to get far with lyme & co treatment if you have an mold issue going unadressed. Consult with others about
this.
ATTACK FOCUS #3 - PARASITESSo, once your gut has healed a bit and you make some progress w/ Y/FO (say, 2-3 wks) let’s do more for parasites. I think some of your sx (reaction to HCL Betaine, “stringy, whitish stuff on feces” after enemas, mucus) are pretty strong indications of parasitic activity. And w/out proper digestion, it’s easy for parasites to flourish. But antiparasitics can be very tough to manage and are hard on the liver and can really drain you. This is why you need to make a little progress with healing first. We can talk more about
this when it’s time.
Also, with a new “killing” protocol, you’ll need to step up your detox protocol.
ATTACK FOCUS #4 - LYME & COWhen you’ve made progress with parasites and your gut has continued healing, then I would introduce one antimicrobial for whichever infection is dominant (I would study Burrascano’s symptom guide or I can share with you my LLMD’s more detailed questionnaire).
And as you do this you need to increase detox one more notch.
ATTACK FOCUS #5 - BIOFILMBiofilms… I need to think about
this more and can discuss another time. I had a conversation w/ my LLMD about
biofilms and she said it was OK to wait awhile before attacking. I want to ask her about
this again because I can’t remember what she said about
it, but also, biolfilms is one of the hardest things to solve so it’s beneficial to start off with the easier stuff first, make big strides in recalibrating your health, then you can tackle the big stuff.
******
So—I’m sure I’ve missed some things but hope this is helpful. As you can see, I think you’re a ways off from being ready to treat lyme & co. but this also helps you focus on one thing at a time. My LLMD and I spent a couple of months healing gut, boosting immune system, reducing viral and yeast/fungal load before even attempting antimicrobials for lyme & co and I swear I would not have lived through it if she hadn’t. Everyone is different so you’ll find your own groove and I can tell by your self-analysis that you will come up with excellent steps moving forward.
Don’t hesitate to ask questions and may the force be with you—we will be!
-p