I am so sorry - your challenges sound so familiar.
First, the reality of Lyme & Co is that finding your unique protocol will require many, many rounds of trial-and-error and a constant evaluation of this very dynamic illness and treatment. So we must constantly be approaching our treatment with a willingness to adjust.
I, too, gained a lot of weight when I started getting really ill. I was always very active and so the inability to even drag myself out of bed was a shock to an active body so I know that was part of it. But it's also common for your metabolic system to shut down. So many different issues impact your appetite and ability to eat and digest food comfortably, so you eat less so your body thinks it's starving and so it stores more fat. And with less energy to feed your body, you have less energy for life. It's a vicious cycle.
There's gotta be more going on than just fat storage, too but I haven't figured that out yet. I won't tell you not to worry about
the weight - (as you probably know, in ADDITION to feeling so miserable, going broke, all the other health problems with carrying around all the extra weight and the impact on the body... you're also dealing with MDs telling you all your sx are your own psychosis or deflecting or misdiagnosing, they're also telling you that if you weren't fat, which is also your fault, you wouldn't be "sick"... it's a nightmare most people w/ Lyme & Co have no understanding about
because most people lose weight...) Anyway, there's nothing I can say to you to help you feel better about
it - other than you are not alone. But there are lots of other things to focus on, unfortunately!
Another thing I wanted to share is that Beyond Balance are generally very low-level treatment products, which is GREAT for some people and for some stages of treatment. In contrast Byron White can be 10x the intensity of BB. I's very possible that you might need to switch things up. And very normal. As people move through treatment, everything changes - the microbial reactions and their load and the immune response, other body systems either get more support or are more burdened. It's often helpful to break everything down and rebuild, according to your body and its "visitors" - and what is happening TODAY.
Below, I have cut + pasted a saved group of suggestions that I share with people who are struggling with their treatment and hopefully it will give you some ideas for avenues to pursue. Please review and ask specific questions that hopefully we can help you with:
There are several trouble-shooting suggestions we talk about
here for people who are not making progress with treatment. There is a LOT more to treatment and healing than taking antibacterial herbals/pharmaceuticals. Unfortunately, even some lyme specialists miss this very important part of our reality.
A few questions to ponder (I've copied and pasted this from previous post of mine so not all of this is going to apply to you but wanted to post as quickly as I could):1. How well is your immune system functioning? Does it need healing time?
No amount of drugs or herbs or other treatment can heal you without the support of your immune system. What can you do to support it is key. A healthy gut is key (70% of your immune system lives in your GI tract) so DIET is HUGE, leaky gut is a major roadblock and has to be successfully overcome, tackling other drains on the immune system like a high viral load, fungal load, etc. are also very important.
Sometimes, it's OK to take a break and heal the gut so that it can do a better job of absorbing our oral treatments and taking care of infections:www.thefooddoc.com/diagnoses/leaky_gutwww.healingwell.com/community/default.aspx?f=30&m=3294327
Bell's Palsy of the gutwww.lymenet.de/literatur/vtsherr_gut.htm
- gut dysbiosis that might also be affecting digestion and food/supplement absorption? See:
.................Bowel Disorders, Part I: about
.................Bowel Disorders, Part II: Healing the Gut By Eliminating Food Toxinsperfecthealthdiet.com/2010/07/bowel-disease-part-ii-healing-the-gut-by-eliminating-food-toxins/
.................Bowel Disorders, Part III: Healing Through Nutritionperfecthealthdiet.com/2010/07/bowel-disease-part-iii-healing-through-nutrition/
.................Bowel Disorders, Part IV: Restoring Healthful Gut Floraperfecthealthdiet.com/2010/07/bowel-disease-part-iv-restoring-healthful-gut-flora/2. Do you also have other infections/or other loads creating additional burden on your immune system that is keeping it from functioning well?
- coinfections? You don't necessarily need to test for these - see: www.healingwell.com/community/default.aspx?f=30&m=3033860
- high viral load(s)? Google viral symptoms and also see: www.healingwell.com/community/default.aspx?f=30&m=3618192
- yeast/fungal overgrowth? See: www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m36442753. Are you detoxing appropriately with effective and consistent protocols?
Often, you have to switch things up or try new ways of detoxing if you're in a stalemate. There are some really good conversations here about
detoxing already - 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 tx.
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.
- 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).
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.
With lyme & co tx the liver really needs support - I 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.
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.
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.4. If you have implemented a solid detox program then you have to look at the context of your treatment and detoxing protocol.
Is your treatment too aggressive? There needs to be a balance between "treatment in (killing microbes) = detox out (getting rid of debris). You can also be detoxing more quickly than your body can process it. If that is out of balance, you will remain overloaded with toxins.5. Is there a more dominant infection than the one you are treating?
The body is dynamic - ever changing and the treatment can cause a shift, the detoxing can cause a shift--so it's important to evaluate and recalibrate every now and then. This is why many LLMDs test for co-infections and pay close attention to any clinical cues in your symptoms for what to treat first but this is dynamic and may change over time.6. Do you have functional problems detoxing due to DNA mutations or other health issues?
If you don't get around the detoxing and methylation issues, you'll never get the toxins out of your system faster than you're creating them with the treatment and the infection, which carries on until you suppress it. Other mutations (neurotransmitter, digestion, cardio, HPA axis/endocrine) can also hinder other body systems that will create conditions that contribute to not feeling well (for instance—neurotransmitter imbalances can contribute to depression, anxiety, crankiness). This is a bit of a maze that takes time to work through, as well - we've talked about
it a lot but here is one conversation:www.healingwell.com/community/default.aspx?f=30&m=3413587&g=3414439#m34144397. Biofilms
Biofilms can harbor nearly everything we're trying to treat. Some infections- and it's known that abx- can sometimes make biofilms worse. The component in the tick's saliva that causes the numbing effect can also generate biofilm growth. It's important to incorporate a good biofilm buster as you're moving through treatment - and don't go off any of the other components of the protocols while you're breaking up biofilms - so that whatever might get released can also be treated.itsnotjustlyme.com/biofilm-myths-and-remedies/www.bayarealyme.org/blog/straight-talk-biofilms-new-answer-treating-lyme-disease/
Generally, we are juggling a LOT of balls in the air but this kind of treatment requires constant evaluation and awareness. Not easy when you're feeling the walls narrowing in on you.
But you're so smart to post your frustration here and soliciting help and support. My brain gets so fried I forget to do that and the isolation gets much, much darker. Maintain communication as best you can - and maybe the most important suggestion - is to see beyond today's frustrations - see yourself healthy and happy in the future life you deserve.
Visualizing is an important process. It's not fluff--it is simply willing
yourself past illness.
Please post questions and anything else you need help with.
Most aspects of treatment vary from person to person, as I think this does. With a few exceptions for tx that has an immediate impact, I would give any component of treatment a good 8 wks before making decisions. And I would change only one thing at a time, whether it is a medication, herb, or detox.
Sometimes it takes your body awhile to adjust to certain medications and herbs. Sometimes it takes your body awhile to detox the aftermath from whatever you're trying to kill. But it's such a dynamic and complex process, it's supposed to be evolving, sometimes painfully slow, but you should have some evolution of your sx (might be in the wrong direction for awhile). But change is usually good. Stagnation, no.
- I started treating yeast/fungal overgrowth… had immediate results.
Second, I started treating 4-5 viruses I tested positive/high for… despite high doses of antivirals, it took switching Rx and 2 months before I felt relief. During this time I also healed a very damaged GI. This process took about 5 months.
- Next, I focused on Lyme - tried Byron White AL Complex herbals for 3 months at very high doses with no response at all. Then a few other herbs w/ no response, no improvement. Yet pretty quickly started declining. Could barely walk during this time.
- I then introduced Byron White tinctures for Bart and Babs and was overwhelmed immediately w/ sx… maintained these doses until I leveled off a bit another 3 months later.
- With quickly deteriorating neuropathy and myopathy, LLMD put me on IV Rocephin abx for Lyme, which nearly knocked me out again and it was 6 wks before I stopped having "neouropsycho" meltdowns on an hourly basis.
- But I had so much toxin buildup in my brain I could not really function, stay on meds/protocol, or particularly detoxing, which made me worse… spiraling down…
- I then started having heart problems from what we thought was oxidative stress from too much protocol, too much in my system and not enough detoxing. I stopped all herbs, continued abx and detoxing - heart issues turned out to be from the IV port (catheter is sitting too deep into the heart, agitating it).
- Then I tried going off antiviral Rx and got knocked out w/ viral overload again. I tried taking an herbal antiviral and accidentally overdosed, knocking me out for almost 2 months this time…
- Finally recovered but asked my LLMD if I could stop abx as well. I was just too polluted to function. She didn't want me to stop cold turkey, so I went on 1/2 doses, which really helped. Over the next year, I was able to get back up to optimal Rocephin again.
- Slowly, I reintroduced one component of my protocol at a time, waiting until I add the next thing. Waiting until increasing doses... took MANY months but finally fully built up the protocol.
- Had also developed these very severe GI attacks every 4-5 weeks... took about a year but finally connected them to bart flares that got worse with BW A-Bart, so I stopped the A-bart and LLMD added in vancomycin IV abx, which stopped all GI attacks but it took about 6 months after a VERY difficult 6 weeks of severe herxing when I started vanco.
- Again, I stepped back other antimicrobials and worked up to optimal vanco doses and slowly reintegrated everything.
- Was doing well again - and Jan of this year I overdosed on anti-biofilm... and crashed hard with bronchitis and sinusitis (which was a gigantic clue for why I've struggled with those illnesses for the past 2 decades). Recovered, then tried the anti-biofilm again, would crash a little less, recovered a little faster, would resume low doses of antibiofilm and these cycles because less intense, shorter over the months... and then I was ready, once again, to rebuild full protocol.
- By May I was ready to go off Rocephin altogether.
- I would also be off vancoymycin by now but I've had 3 other procedures/surgeries that I am gearing up for and since vanco is broad-spectrum abx, I'm going to stay on it.
Anyway, that's the Cliff-notes version of how varied my process has been and while I was fighting a chronic condition, other people have also had to cycle through many stages of their treatment to figure out what worked.
Hope this is helpful -
Post Edited (Pirouette) : 10/11/2017 2:32:57 PM (GMT-6)