Hi M. Lowe -
I'm so very sorry you are struggling like this. I'm one of those people who suffered 16+ years before even getting diagnosed and I've been treating for almost 4 years. It's been hell but I've made considerable progress.
I've had those moments you're describing where you are trying to be very objective and honest with yourself about
whether or not more insufferable days are worth it. It's astonishingly common among those battling Lyme because of how difficult this is and how bad days just roll into one another. It's also literally one of the physiological manifestations of the disease and often, this can be addressed.
The absolutely brilliant thing you did was to come here and post and ask questions. That shows will and determination that is 100% required to get through this. We can help, too - this forum is filled with many in the same boat as you but also many bright, experienced and generous people willing to share their knowledge and suggestions.
ABX
A quick note about
abx - YES, they do work for some people and are problematic for others. They do need to be part of a MUCH more comprehensive protocol, though. And IV is not going to be much more effective than the right oral abx as both cross the blood-brain-barrier----unless you have GI issues, which would make oral antimicrobials--including herbal difficult to effectively treat anything. And you could have GI issues you don't know about
so that is something to consider. But iV abx is a whole other gigantic area of complexity so it's best to carefully consider.
STEP 1
I agree with Girlie - first, you need to find another LLMD to partner with. It's not uncommon to need to shift gears at some point.
STEP 2
Shift things up by stepping back a little bit and evaluate if you are covering all bases. I have a pretty good idea I know who you were seeing so it's very likely that you did cover all the bases but it's critical to take another look at this, fresh eyes, new perspective.
Here is a post that I share with people who are stuck in limbo - see if anything resonates with you:
Not healing:
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=3294327Bell's Palsy of the gut
www.lymenet.de/literatur/vtsherr_gut.htm - gut dysbiosis that might also be affecting digestion and food/supplement absorption? See:
.................Bowel Disorders, Part I: about
Gut Disease
perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/.................Bowel Disorders, Part II: Healing the Gut By Eliminating Food Toxins
perfecthealthdiet.com/2010/07/bowel-disease-part-ii-healing-the-gut-by-eliminating-food-toxins/.................Bowel Disorders, Part III: Healing Through Nutrition
perfecthealthdiet.com/2010/07/bowel-disease-part-iii-healing-through-nutrition/.................Bowel Disorders, Part IV: Restoring Healthful Gut Flora
perfecthealthdiet.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.
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.
- 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.
LIVER
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.
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.
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.
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/Hope this is helpful - if not, just keep asking questions.
-p