"Cured" by most standards; so here's my story, what I did and what I'm still working on

I can function much better now, but still find it hard to claim 100% cured since I am very thorough in its meaning to me and I'm dealing with the aftermath, however most would agree that I am "cured" by most standards. No doubt, the aftermath of this can take a long time improving depending what it did to you and for how long.

What obvious tick infection symptoms I did have slowly went away after ABX. I try to continue learning about my autoimmune conditions that might have been triggered by lyme, while acknowledging I also have certain genes associated with autoimmune and immune issues as do thousands of others- who apparently have lived without lyme.

Officially signed on here in 2014, but read starting around 2010. Checked out a few other forums before finding this one. As my signature says, I had ups and downs after a Bulseye rash from 25 years ago, but even some symptoms before then. I learned early on how to deal with a long list of health issues piling up that Drs could not figure out. Late 90's was not to bad. Started getting worse 2004 and '07 onward I had decreased functional abilities.

I improved a lot the following two years after 12 months (spread out to 15 including breaks )of various ABX for tick illness and occasional yeast eradication Rx's.

Now early 50's, I've ventured into nature since I was a kid, and ticks were a part of my life, my friends too. I still cannot stay out of the woods, but now proceed with caution or higher speed on my mnt bike vs walking trails. I reserve hiking for the fall and winter. Do more canoeing in the summer (if not hot like this summer was), near woods, but not in them ha ha...and never fish from a weedy shoreline anymore.

My advice to many still sick here is to not just go after the bugs, but also do everything you can in addressing individual body system malfunctions:

Get your thyroid free T3,free T4 and tsh checked. If they look hypothyroid then get antibodies tgab and tpo to check for thyroid autoimmune dysfunction. Low thyroid and lyme symptoms overlap a lot. Thyroid effects everything and the ability to heal.

SLEEP IS A MUST, many posts on this here with good advice. If you have morning anxiety and too much night time brain activity to sleep, try something like the adaptogen Holy basil that calms the nerves from controlling cortisol spikes. Try the different calming amino acids and herbs one at a time to sleep. Even cheap capsules work, no need for expensive tinctures. I averaged only 3 hours of sleep a night for 20 years with this illness before I experimented with amino acids, sleep herbs, Rx sleep agents and OTC Benadryl for sleep. Did not dream for 20 years either, now I do along with sleeping entirely throughout the night. I did it,.... so can you.

Body pain- use a foam roller and or other myofacial release tools (golf and lacross balls) before bedtime and learn to understand/read your muscle system.

You and or a Dr just concentrating on lessening the bug load is not enough. The body needs to be at ease to conquer this, thus the above info.

Try to lower your stress load and think positive knowing others get better. Worrying will not help. Accept that you cannot do everything you want to. Do what you need to and/or get help when needed.

Something that prob sets me apart on this forum which others could have a hard time relating to as far as healing pain goes is that I have 27 years of many competitive "2 wheel sport" impact injuries (motor and pedal) + several higher speed impacts that never seemed to heal in a timely fashion probably because of lingering lyme. Despite lyme, I had some years of great finishes that I only dreamed of as a kid, all the while adapting to a riding style that fit /worked for my needs; I did it wrong by the book, but still had good results ha..ha. Eventually I had to retire early due to lyme complications, not just aging and now I'm just an occasional spectator. My body has been though he// in more ways that one pain-wise, so I cant pinpoint the pain cause on just tick infection alone.

Why I mentioned the previous paragraph: If there is something that you were born to do as far as activity/sport, or less physical stuff, do it when the time is right (but still before age limits you if it can), for some that means adapting for your lyme limitation needs. I have lots of interests, the rest are easier ones but I knew as a child what my #1 would be, so I concentrated on that - there were good years and not so good years, but the good were great.. You can apply that to any interest of course, but might need to be flexible and open minded on your different "adaptable" approach. I guess what ever you're more natural at will help in adapting to.

Edit: I'm still working on improving autoimmune through diet (latest posts), one of two elevated thyroid antibodies has normalized for 1.5 years after 20 years being abnormally elevated - diet helped this. I'm hoping that avoiding newly found inflammatory foods (to me) will help improve my immune cell labs too. I've continued healing/fixing/strengthening muscles and joints per my workout and muscle tension release routine. Having developed slight scoliosis and one slightly sorter leg also complicated "unwinding" the stuck and twisted body that became the new "normal", which is now a lot better / straighter today.

As a closing comment I'd like to say this forum has provided me with a great all around info/question base for total health. I like that it gets regular traffic, but seems like it was more used about three years ago. I don't know if there are any similar lyme forums, most I seen/read had way less people and lower traffic; less comments for questions = less knowledge and learning.

Motor on.....

Thank you astroman. A very hopeful and positive post!

Thank you for posting. Great advice and encouragement. Thank you.

Thanks for sharing your story and determination to keep moving forward.

Letting others that are struggling everyday that there is hope for a better day is the best medicine.

I wish you continued healing.

Thanks astro congrats on your successes..... ...bvt regulates th1/th2 autoimmune markers . I can email you data if like

Diet can certainly help lesson the inflammation load coming at us from different angles, as well as starving candida. It can be overwhelming to newbies here though. Different diets for different reasons, lyme, candida, autoimmune, Ive done several. Lots of self-experimentation/ educated guessing with diet.

Moving forward, I'm focusing on food my body likes....scientifically proven for me via lab testing.. Which is the $350 Mediator Response Test (made two posts on that). Its like a personal report card on how 170 common "American" food items/spices, and additive chemicals react or don't react with your blood and immune system. They actually measure cytokine response from your blood with each of these food items. Doesn't get anymore scientific than that. A PT let me know about this test, some of her "fibro" type and autoimmune patients got better from diet based off this test.

Since autoimmune and low immune are "opposites" but often are found together in people with them (along with certain genes). Benefiting one can rage the other and vice versa. Its immune system malfunctioning from both seeds. There is a lot to be learned about it before treating besides diet, so diet's a no brainier. I saw one specialist that new some of this, but in my opinion, not enough. Clinic #2 is a couple months away. Its a shame so few understand this, there are actually more LLMDs than true immunologists. As I found out, there are some pretty good "standard" immune tests for these too, and even though they are conventional medicine tests, my health insurance didnt know/ recognize them or wanted to cover them, despite a rarely used medical code given to the diagnosis. Tired of baby sitting/educating my health insurance representatives.

Post Edited (astroman) : 9/3/2018 7:41:04 PM (GMT-6)

While we're talking about diet: I've tried cutting certain things out of my diet, I even went gluten free for 2 months, and there was never any discernible difference for me. After a lot of experimentation, my LLMD and I have decided I should just focus on trying to eat healthy in general, and not worry as much over specific substances to avoid. I've never been an incredibly bad or incredibly good eater, but these changes have encouraged me to cook for myself more, which is a good thing anyway. It's a lot cheaper than eating out all the time!

Still, I travel every week for work so sticking to a certain specific diet would be almost impossible for me, unless I resorted to skipping entire meals (which I did do when I was trying the gluten free diet for a while, when I couldn't find anything to eat). That ended up not making me feel so great, for obvious reasons. Just my two cents. I've not found any foods that make me feel better or worse, and I've put a good amount of effort into looking for them.

Noah2112 said...
While we're talking about diet: I've tried cutting certain things out of my diet, I even went gluten free for 2 months, and there was never any discernible difference for me. After a lot of experimentation, my LLMD and I have decided I should just focus on trying to eat healthy in general, and not worry as much over specific substances to avoid. I've never been an incredibly bad or incredibly good eater, but these changes have encouraged me to cook for myself more, which is a good thing anyway. It's a lot cheaper than eating out all the time!

Still, I travel every week for work so sticking to a certain specific diet would be almost impossible for me, unless I resorted to skipping entire meals (which I did do when I was trying the gluten free diet for a while, when I couldn't find anything to eat). That ended up not making me feel so great, for obvious reasons. Just my two cents. I've not found any foods that make me feel better or worse, and I've put a good amount of effort into looking for them.

Noah - I know where you’re coming from. I did the strict diet when I first got diagnosed and no change in how I felt. So now I don’t follow a strict diet - but I am conscious of what I do eat and for the most part eat fairly healthy - but dairy is in my diet, so is sugar (I eat a lot of fruit and even some baked goods) - gluten is limited (just because it’s easy - lots of choices for GF meals.

I don’t have any digestion/stomach or GI concerns to deal with tho.

mikeee said...
Hello, I'm sorry to know your so many serious symptoms. I was a miserable Lyme disease patient once, latter I found out a lot of useful information on the forum zhangclinicnyc. And there is a book called Lyme Disease With Modern Chinese Medicine which include an alternative treatment strategy. Maybe you can seek for help in it.Wish you get well.

Wrong post maybe??

If your read it, I'm pretty much cured.

Maybe the "zhangclinicnyc" people should come over here?

I see this is your 4th post, so welcome to the club if your seeking help. If your selling stuff /marketing (maybe?), this is not the place to do it.

After reading your four posts, they are all about marketing Dr Zhang. If your selling for him, your done here, go away.

Post Edited (astroman) : 9/5/2018 12:30:26 AM (GMT-6)

They're were some interesting comments/info on fasting on a couple posts here. And someone was fasting I remember reading that one. Thats a lot of will power. I Didn't try it. I think id have to tranquilize my self to do that! Or at least have a more vegetative lifestyle to not get hungry. So instead I'm focusing on the gut healing diet info I posted above, but taking some prior guess work out of it.

I had oral ABX only. I have not seen injected ABX mentioned here before. Wonder if it works better for localized areas at all or just finds itself into the blood stream.

I would suspect many have autoimmune issues going on but have not discovered it.

You certainty know when you hit your exercise limit with this. Its always better to stop while you still feel ok ......or pay for it the next morning.

I also have noticed no change in my health related to diet. Removed gluten, sugar, dairy. No significant difference. I have been logging my wellness for over a year.

Most autoimmune have high antibodies associated with it, as I do.

Hashimoto is defined by one or two thyroid specific antibodies that are elevated, in addition to hypothyroid hormone levels, and symptoms. I had two elevated for year, now one normalized. Thyroid is still hypo though and take med for it. Hashimoto, being an inflamitory condition, has worse symptoms like pain associated with it vs regular hypothyroid. Drs only treat the thyroid levels, not the inflamation, they dont do much.

I also have vitaligo (skin issue) which is autoimmune but no antibodies known to test for.

I have rollercoaster ANA too, many do though.

My immune levels are also wacko, numerous tests show this.

Post Edited (astroman) : 9/17/2018 1:48:39 PM (GMT-6)