Hey, Y'all - Update!

Hey, Guys! Long time no post. I saw Astroman's post for success stories but since I am not completely symptom free I didn't want to join that post. However, since we all learn from everyone's journey, I'm happy to post an update and happy to report that I am fully back to life - new part-time writing job I love, playing on my 4.0 tennis teams, cooking most nights for the family, and traveling for fun. When people in my life ask if I'm better, I just say yes, but the real answer is somewhat murky. With everything that has happened, one never knows with Lyme.

I joined the forum in 2015 thinking I was dying, so it's been a long road. And, while I'm back to normal life and consider myself "healed", there is damage and who knows if it will ever completely go away. My infections were numerous (Mold, Lyme, Bart, Babs, Mycoplasma, Anaplasmosis, Hystoplasmosis) plus heavy metals - sick puppy. I can't drink anymore without neurological flairs, my tendons seems pretty weak and I pull muscles for no reason. I had to have foot surgery last January and the guy couldn't explain the massive inflammation in the toe joint (I thought to myself - hmmm, can you say lyme???). On the upside, I didn't flare at all lying around recovering and didn't do any detox or supplements for 6 weeks during recovery (except some THC cream on the scare) and decided if I can go that long, I was healed. So, there.

My treatments: 4 months of doxy, 9 months of pulsing minocycline and tinidozole, massive mold detox protocol (cholestyramine/charcoal/mcp/epson salt baths) daily, treating my MTHFR and B-12 deficiency, LDI shots, Desbios remedies, Electrodermal screening, Buhner herbs and acupuncture every 2 weeks. Geez. It's painful just to even write it down! So much money....I think it all was crucial and I wouldn't change a thing except I'd go back to Dr. Lixin, a Chinese medicine doctor in Denver and live there until he cured me. I was up there for two weeks taking care of my son after his surgery and visited him on a whim. He told me to come everyday and drink his tea. I went from barely walking and bells palsy on my left side to running across the street. He said he could probably get me better in 3 months. I swear I almost moved there.

I also did two years with Conscious Transformation and a personal mental coach doing neural retraining of my sympathetic nervous system and negative thought patterns. This has brought me much emotional relief and happiness crucial to dealing with chronic illness. If anyone is interested, the book The Inner Matrix is amazing and there are on-line book clubs you can join for free to do the 6-week meditation program. Meditation has changed my life!!

In January of last year, stuck at 95% healed, I quit going to my LLMD and switched to a local doctor that does the LDA/LDI shots (not the Functional Medicine doctor I saw briefly, this one is a insurance-covered DO). As you know, Lyme patients usually suffer from chronic inflammation. My doc says there is research that getting the two LDA shots for food and air-boirnes would help my over all inflammation. At the time, my remaining symptoms were some neuropathy, tingling, a tight shoulder out of nowhere, some odd phonetic dyslexia which comes and goes and a severe headache every 3 weeks or so. The LDA food shot requires a 3 day almost liquid fast (boiled cabbage, carrots and fish with no salt) which was super tough to do. However, I did it and have had an amazing result! My peanut allergy, dairy and wheat disappeared and I sailed through ragweed season. I keep pinching myself I'm so over the top excited. I really need a booster because I think its wearing off, but - dang. That diet is brutal. I haven't had a headache since

We also discussed doing LDI for my remaining symptoms and here is where it gets murky. I was doing LDI for 4 different pathogens at once, so I never knew what was helping or causing a flare. My EDS screenings showed little pathogen activity, but I still get ringing ears and some vibrating when I take Japanese Knotweed and Cat's claw, and when I take Candida stuff. So, I'm pretty sure its still there. To make it more confusing, on the days I forget to take the supplements, I feel completely fine! And, when I travel, I'm symptom free. I did an LDI shot for Candida in July and my neuropathy went away. I did an LDI shot for Bartonella in September and my headaches went away. So, currently, I am just rotating them every two months

So, the take away for me is that I don't know if I'll ever be symptom free but I choose to just move on and deal with things on a daily basis. I thank God I found this forum as y'all kept me sane during my darkest days. Here's to everyone healing - sending good healing vibes your way...

LDA is for allergies and LDI is for lyme (and other infections).

Ya, LDA is the what Ty Vincent based his science on and created LDI. They are totally different except both are homeopathic doses. I think the reason getting LDA to get a handle on your allergies would be beneficial is it would reset the immune response to all the other things not lyme related.

I agree about all the stuff you can do to make a difference and everyday is about supporting myself physically, emotionally and mentally.

Great to hear from you! I took my first yeast LDI dose today - hope I get some improvement like you!

It is still not clear to me if LDA (foods, environmental, chemicals) is fully working for me. I do not do the diet restrictions like you - dr V has not found them to be necessary for most. I may try it though to see if I get a better response.

I am trying NAET for my 10 year old to eliminate allergies. Kinda strange really but I will be able to know if it works without a doubt in the Spring when seasonal allergies kick up.

95% healed is 100% to me. I mean I've never been 100% functional in the first place. I'd gladly take 95% and call it a day.

cr3ativegirl said...
Jb: Precisely why I posted! Not sure if 100% is possible and it’s too easy to get stuck on trying to heal when you can still be grateful for the life you have. I only have one chance to live. If this is the way it’s going to be for me, I am grateful for what I got. Never really understood that until my brother said to me “what are you gonna do? Just lie around and feel sorry for yourself or get up and hobble around the block the best you can and enjoy it.” It sounds harsh but that is what I do now. Try to enjoy every second. #myattitudeisgratitude

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You're sounding like me last year lol. Thats why I was hesitant to announce / write my "cured" post - it didn't feel honest and its hard to tell what the leftovers are from and I seriously cant remember having perfect health. Plus my body was subject to severe sports impacts (but they didn't heal properly) so what caused it what im not sure.

The rest of the population "adapts" with small handicaps when needed too, not just lymies.

This is kind extreme though!!: https://www.youtube.com/watch?v=_vrfv5r8cs0

Whatever limitations we're left with do become a hobby to resolve; I deal with it but still look at fixing it too. I may never be supplement free which is always better than having a bunch of RX's on the counter. This place still has new ideas for me every once in a while.

I have lots of hobbies that might make it easier, can alternate that with what hurts. My foot is bothering me but shoulders are great so I should go canoeing, oops....its winter....the lakes are frozen. Oh well, can always you-tube summer outdoor stuff and pretend I'm there....

In my 50's now and sadly witnessing some people dropping like flies from ills and other stuff, so enjoy life, its short. We never know if we'll wake the next morning or get out of the car alive.

I’ll always be a part of this community. It’s truly a special place.

Astroman - very well said! I am 53 too and we can’t blame everything on Lyme!!! Sometimes I have to just breath and let it go. It’s really hard sometimes because of so many random symptoms over the course of this disease. I’m taking CBD oil and it seems to help some - just overall well being, no great shift.

HeartsinPain: MTHFR can be complicated. It's really trial and error for EVERYONE. This includes our beloved MDs who have to start us off somewhere, so they just give you stuff and make adjustments to your dosing based on your symptoms. They are guessing too unfortunately and some make better guesses than others. So, if you ever get a doctor that pushes back and does not listen to your symptoms or tells you you should be feeling fine, run for the hills.

Georgia Hunter has posted extensively on this topic: when we have a heavy load of pathogens, the body slows down the detox cycle. This would include processing methyfolate. So, when you try to treat MTHFR, you are ramping up the cycle and you can herx pretty badly. But it's important to treat. I personally don't "freak out" when I herx. I just dealt with it, and keep plugging away. If you start to add the methyfolate, etc, just do it slowly or every other day or the best way you can handle it. Trust your body.

I also have MTRR which means I don't recycle B-12 well, so I have to take extra B-12. I take Designs for Health Tricobalamin lozengers (3 types of methylized B-12) - after much trial and error, this one works best for me.

Othe MTHFR supplements I take are:

Electrolyte Plus C - I take this every morning with Garden of Life Probiotic Fiber. When you up methylation, you use a lot of potassium so you need to take electrolytes.

Pure Encapsulations Homocysteine factors - It has Methylfolate plus TMG and I definately feel a difference on this product. Google Trimethylglycine and Lyme or go to this link: https://www.prohealth.com/library/mthfr-support-a-complete-complex-33811

Vital Nutrients MSM 1000mg - Here's a good explanation: http://www.tolymeandback.com/my-experience-with-a-st-lucian-medicine-man-the-amazing-benefits-of-msm/

Integrative Therapeutics Tri- Magnesium - 3 types of magnesium. I'm into hitting as many versions as possible in case I'm low on the enzymes needed to break things down.

I take this stuff everyday.

Congrats on your improvements, Cr3ative girl.


I hope over time you get rid of the last few lingering symptoms. Keep us posted - come back now and then, okay?

HeartsinPain: I didn't address alcohol. Yea, it's really not a good idea. I sometimes just say f' it and do it but only if I am eating something with fat. No more drinking without food. Just feel terrible. I read somewhere that alcohol neutralizes some enzyme required to kill lyme, but I've looked and looked and I could never find the page again unfortunately. Whenever I drink, I start vibrating - I don't even know what that means other than my vagus nervous is irritated. I think not drinking is just better because you liver is working so hard to clear the other toxins. However, I also think a glass of wine to enjoy a social situation and feel "normal" as in "I'm healthy and enjoying my time on the planet" is also a good idea from a mental standpoint. Lyme is really tough on our relationships and sharing a glass of wine with a friend can go a long way...Probably a controversial statement but I stand by it.