How is everyone actually dealing with all of this?

I'm back on treatment after 6 years off. This has been a 10 year ordeal for me so far.

I thought I needed carpal tunnel surgery this fall and that has snowballed into all sorts of doctors agreeing I do not have carpal tunnel, but after 3 months and about $5000 in testing, I got diagnosed with Chronic Neurological Lyme Disease.

The LLMD I was referred to by my doctor and also by ILADS was $1400 for one appointment and a "Phase 1" box of supplements. Add prescriptions to that and I'm over $1500 for one appointment.

I had been feeling pretty well - was working on losing weight, doing FitBit Challenges, running or walking every night and generally living my life with nominal interruptions (like the carpal tunnel situation). 30 days into treatment and I am not able to stay awake a full day, I'm gaining weight like crazy, I need to apply for a handicap placard because I cannot walk to my office from the parking at my job because my joints are so painful and noisy crackling and my balance is so off I'm always worried I'm going to fall - from just walking.

I'm just having THE HARDEST time coping with the expenses and the negative impact on my day to day life.

I wanted to ask you guys specifically....

1. Do you find all the supplements helpful/worth the cost?
2. Do you find the dietary restrictions worth it?
3. Any tips for how to deal with going from a healthy person to an ill person so quickly?

Thanks Girlie! I did 3 weeks this go of absolutely no dairy, gluten or sugar. I'm also vegetarian except for fish oil supplements and probably other things in the supplements I don't want to know about, lol. So it was just super hard to do long term and I don't notice a difference either.

6 years ago I stopped because I was on 100+ pills a day and then out of nowhere started vomiting like 15 times an hour. My doctor said I was probably just unable to do oral antibiotics anymore and he cleared me to be off all meds for 6 weeks. I got pregnant first month and honestly felt better every day for a long time, which made it a unique pregnancy for me - my first two I was quite ill for the first 6 months. So IDK.....after a while I was symptom free, but I'd still get a few odd neurological episodes a year and had to be worked up for MS a couple times - full brain MRI, etc but everything came back fine. In hind sight, those were probably Lyme flares, but generally speaking, I lived pretty normally for those 6 years.

1. I am getting things relatively cheap with my insurance, so I can't answer that. I will have to find a new doctor soon, and it's going to get mad expensive for me too. I still have to figure out if its worth it. In my experience with my NP, I find her recommendations for the more expensive supplement brands are totally worth it. When I cut corners, my progress is bad. When I do what she tells me, I do well.

2. The diet IS worth it for me. When I think my progress isn't fast enough, and I get frustrated, I cheat, then I feel so sick again and realize that I HAVE been getting better all along, its just slow. I have more good days on the diet.

3. Take it one day at at time. Find support here and look up the success stories, not the horror stories. I feel like I'm finally on the way OUT of the tunnel instead of heading in, and its not nearly as hopeless as it seemed at the beginning. The healthier you were when you started, the better I think your body will heal. Some people are in such bad shape when they start, if they can come through it, so can you!

It's a real mental exercise, though. Even with all the neurotransmitters and food and supplements, I still fall into depression and despair sometimes. Just keep swimming.

1. Do you find all the supplements helpful/worth the cost?
Yes. So far. It's not cheap, that's for sure.

2. Do you find the dietary restrictions worth it?
Yes. They're hard at first, but after a while you see a cupcake and it becomes 2 days of hell and not worth it. And funny enough, sugar and bread don't seem as appetizing to me anymore. I take joy in knowing I'm experiencing food in its pure form.

3. Any tips for how to deal with going from a healthy person to an ill person so quickly?
I cried A LOT in the early days. Not crying so much anymore, just kind of malaise and feeling "down". It's only been a year for me. I've tried to keep myself busy with audio books, writing when I feel good, not loosing site of my goals - even if I only write one sentence a day I'm going in the right direction. On days when I can't write, I do SOMETHING that keeps my goals on my mind...whether it's watching a movie that inspires me or just keeping my mood up.

Cost is half the reason i dropped the dr's and just went with buhners approach. $50 of knotweed lasts me several months at this point and it's about all i can tolerate. Being in control of my treatment is really what keeps my sanity. As far as diet, i had a 70% reduction in my neuropathy from diet alone as well as much better GI function. Diet absolutely can exacerbate inflammation, but there's no way to calculate how much it's affecting you. And in the end i found it was easier on myself to be lenient towards a few dietary things than overly strict at the consequence of being stressed out. Because stress is physically damaging too

being sick for 2 1/2 years i tried the no "anything" diet and it did nothing for me after several months so i ditched it. i still try to avoid simple sugars and alcohol but i'm no longer militant about it why remove something i enjoy if it provides no benefit?

6 years symptom free? i'd take 6 days right now

You may want to refinace to check your child for lyme ..if you were symptomatic and not on abx during pregnancy there is a good chance it was transfered transplacentally!...

If on abx or antimicrobial herbs strict diet must be adhered or candida WILL grow out of control leading to more weight and fatigue imo
If your just on japonese knotweed for cytokines i imagine not being gluten free dairy free sugar free is fine .probably not killing bart babs or even spirochetes but sometimes living for the little things is what its about .

hhc - although mineral and vitamin deficiency are prevalent if its not for killing bart or spirochetes it is optional..aside from b vitamins to detox ,rebuild items like royal jelly and collagen and minerals like ionic liquid ..q10 and essential fatty acids have been helping ...

the bee venom has halted the popping in my joints .

it doesnt sound like you were symptom free during the 6 years? I dismissed headaches ,shooting pains ,ganglion cyst and other symptoms for many

Post Edited (bluelyme) : 5/3/2017 5:37:33 PM (GMT-6)