Happy update!

I always said that if we got better I would come back and give hope to others.

Its been several months now of virtually no symptoms in my girlfriend. We are cautiously optimistic. If you look at my post history you can see how bad it got. The most heart breaking moment was when she matter-of-factlly said that she did not want to live any more. Her pain was near constant 7 out of 10 pain which was worse in the evening and slightly better in the morning. This pain and all the other Lyme symptoms lasted for years. She was bit by a tick 8 years ago, but her symptoms got really bad three years ago.

We are still not sure what caused her to get better because we were trying a few new things when she went into remission.

Heres what she was doing when she got better.
1) Pelvic Floor physical therapy. I believe this was suggested by someone on this forum. Thank you. None of the other therapy we tried helped. She had some kind of physical imbalance that may have been contributing to her discomfort.

2) IV Therapy. Im not sure what exactly is in the IV therapy, but we found a doc in so cal who understands lyme and gave her a bunch of stuff in her IV twice a week. Each session lasts hours and I believe insurance covers it in her case (lucky). The IV therapy was marketed as something that can help the mitochondria.

3) This is the big one. Mold. We found and eliminated a ton of mold. According to Neil Nathan mold can exacerbate Lyme symptoms and prevent any treatment from working. We knew she was exposed to mold from the toxins in her bloodwork, but we didn't know where it came from. The first LLMD we saw didn't seem to think the mold was an issue, which in hind sight I think was a big mistake.
After someone on this forum suggested Neil Nathans book Toxic (again HUGE thank you) I realized that mold needed to be addressed before we tried to kill any bacteria in her. She lives with her parents and they do not "believe in mold" so we couldn't expect help from them for testing. We are poor (her parents are not) and didn't spend the big bucks for a professional inspection (another big mistake). Instead we paid 300 for a kit that you test yourself and then send into the lab. The kit failed to detect the mold. Several months later we got lucky. The washing machine had a leak. They found a ton of mold that had been there for a long time. Thankfully her parents could afford a renovation of her kitchen. Her mom had always wanted to redo the kitchen anyway. But when you buy the cheap mold kits youre risking youre life to save a few hundred dollars-- not worth it.


Im not really sure whats to do next. We still have tons of tinctures, but I wonder if we should try to treat her further considering she has virtually no symptoms anymore? Her diets not even perfect and shes fine. Were going to go bike riding together for the first time in two years tomorrow.

Its only been a few months so Im not saying shes cured even though it feels like shes cured. I do wonder if there are things we can do to make sure she stays well forever.

Post Edited (robinhobb) : 3/12/2024 2:51:13 PM (GMT-8)

well Done Robin - and thanks for coming back to tell us the tale

in terms of staying well and preventing relapse - i think most LLMD's will now agree that Lyme and the co-infections behave as opportunistic infections - and really only typically take hold and cause life altering effects when the hosts immune systems are compromised in some way. many of us can relate to this as we became ill only after a stressful or immune dysregulating event.

this can be caused by a number of things - some are outside our control - like sudden trauma, surgery, acute viruses etc - but many factors are within our control - at least to some degree:

-sleep is a big one - lack of sleep lowers immunity and dysregulates the immune system - so getting 8hrs of quality sleep is great insurance for overall health and longevity and better overall function - as well as protective from lyme relapse.

-stress - for reasons very similar to the above - is very immunosuppressive - so prioritising positive lifestyle measures around stress - ie actively prioritise time in your week for stress reduction techniques - meditation, time in nature, yoga, non sleep relaxation techniques - have all been proven to improve immune function. pick one of two that suit you and work them into your week.

-Exercise - helps build the immune system as well as overall health and function -

-Gut health / diet - are closely related - the microbiome helps tune the immune system - stops it being overactive in places it shouldn't - like attacking the hosts own body - and helps it react appropriately to pathogens, improving our defences. eating a diet that is mostly whole unprocessed foods is a great start - if it wasn't around when our grandparents were alive - its probably best avoided

life is not perfect - and you don't have to be perfect in all of these - but if you are doing at least something beneficial in each - you will have much better chances of staying well - and as a by product enjoy better function, overall health and vitality and mental health long term also.

finally - try not to overdo it too soon - i know it will be tempting to make up for lost time - but your girlfriends body will need time to rebuild and recover full health and will be a little fragile initially - watch out for things like PEM ( delayed fatigue or worsening of symptoms after exertion) and build up activities gradually

if relapse were to happen despite these efforts - and i sincerely hope it does not - at least you would know its not for lack of trying -

all the best!