Update

Hi all,

I just wanted to post an update because I have noticed that some people will disappear and it will be hard to figure out what happened to them.

I mentioned how horribly ill I was in March. After three weeks of doxycycline then using herbal supplements for the following month (Samento, Banderol, and Cumanda which upset my stomach a little but I think helped alot -- took some time for my tummy to get over the antibiotics and herbs), other supplements like Magnesium, Vitamin C, Vitamin D, Colloidal Silver, Fish Oil, Niacin, and a Multivitamin every day, I believe I am on the mend.

Two weeks ago, my doctor redid tests for me and all the things that had popped up on my labs when I was REALLY ill (like positive ANA, positive CCP, Lyme IgM etc.) all tested negative as well as my Lyme test. I did have a couple IgG bands which were not there when I first tested CDC positive for Lyme IgM; this is apparently consistent with what happens when you are first infected. I guess you get the IgM response first that then goes away once the active infection becomes inactive (or less active, I guess), then the immune system switches to IgG (subject to debate, I know). For about a month in March/April, my doc tested me every other week, and every week seemed to have one more band pop up on IgG until the maximum I got was 3 (not CDC positive but possibly IGeneX positive). I was then negative IgM by the end of this. The IgG will apparently stay forever like they do for EBV and CMV, etc. if you have been exposed to Bb.

As to how I am feeling -- about 85-90% better. I was able to have a hernia surgery recently that I have put off and have been recovering okay from that. Just a week ago I was back to jogging (just ten minutes) but on the exercise bike for 40 minutes every few days. My energy has come back about 90% and although I am still feeling some weird neuropathic things (like a tingling in my ankle and wrists here and there), those even are lessening and go away fully some days. Some days I really feel great, and it strikes me as nothing short of a miracle, given how TERRIBLE I felt a couple months ago. That could all go to hell in a hand basket overnight though, I know, but this is the update right now. :)

I have seen a slew of doctors and read a lot about long-term antibiotics. A high school classmate of mine had chronic Lyme for years that was treated with a ton of antibiotics for years (IV and picc line I guess?) and she feels that all of those things really disrupted her immune system and made her worse. I've read a lot of peer-reviewed studies on this and it seems that too many antibiotics may not improve the situation but could cause harm since they disrupt the microbiome, etc. There are also a lot of studies that are pretty frightening with the heavy duty picc/IV antibiotics. Sometimes it sounds like the only way if you just feel like crap and you and the doctors don't know what else to do, but I have read that natural approaches may also be able to help without being so deleterious to your system. I am no authority but I do have a PhD in science and have read everything I could put my hands on for the last few months in the literature. What I have really come to believe from reading about how the LLMDs treat is that it is important to get your system in balance. I think that those tests for imbalances and other problems with your immune system are very important. Having enough vitamins, getting rid of toxic foods/substances, getting your body into balance, getting rid of the other pathogens (whether you do it moderately, aggressively, or with herbs.)

This disease is no joke. I can only imagine what you guys have gone through with years of this. From the end of February to the beginning of April were horrible times for me and I never thought I would see even one day where I felt like myself. For the last month, I have felt like myself again and pray everyday that I continue to feel better. Who knows what will happen but I think positive and pray a lot (as cheesy as that sounds). I guess I want to keep facilitating the idea of hope. Two friends of mine have recovered fully from Lyme without any continuing effects after a round of antibiotics (one friend of mine thinks she had Lyme for at least a year before diagnosis) and now, after four years, she said she feels no lingering effects after a month on Doxycycline when they first diagnosed her (the same rheumatologist who has been treating me).

I teach biology and I just want to express something that I think is very important. The mind is very powerful. It connects to the pituitary through your hypothalamus (the HPA axis) and stress signals sent by the processes that occur in your brain (what you think about) alter all kinds of different things in your body. If you try to think positive and direct your mind in that way, it will physically alter how your body responds to various insults. So please try to think positive so your immune system can do the rest.

Some of you guys were so very kind in helping to answer my questions along the way, and I'm sure this will not be the end of them, but I just wanted to thank you.

Not to rain on the parade but 2 months may be too soon to be in the clear. I got sick in January and after treating for a month and half felt 80-85% better. Went 2 months of feeling like I just had another small hump to get over. And then recently crashed.

Lyme has long lifecycles up to a month. Your immune system can't really kick butt until the lyme is at the end of the cycle, comes back out to the blood stream to reproduce.

Misty I am in California - northern near Lake Tahoe and I got mine from tablecloths at a luncheon. I guess that the dog or cat rubbed against the long flowing tablecloths and deposited the tick. I was on the clean up crew and gathered those tablecloths into my arms to take to the laundry. Then pow - bit. 40 women were at this luncheon and I am the only one that got bit.

However, because of my bite, a neighbor of the house we were at, she got bit about 3 months later and her bite looked just like mine and she went immediately to the doc and got doxy. I think my lyme diagnosis prevented her from getting lyme. She saw her bite mark and knew it looked just like mine had looked. She took doxy for 6 weeks and is fine.

Ya just never know.

Mental imagery of it leaving my body was fun.

I went so far as to imagine that those grains of sand in my eyes in the morning were dead spirochetes. LOL!

I really believe that there are many ways to good health besides medicine.

I think sleep is HUGE! Most of my healing goes on when I am not taxing my body by being awake and doing things.

I think good self image is important. That we are happy with ourselves and proud of ourselves.

I love laughter the most. I think the endorphins of laughing are just as powerful as the endorphin high a runner gets.

Human touch is soothing. A hug - powerful medicine.

And then comes good, healthy, slowly enjoyed, food.

Misty, thank you for giving others hope and sharing how you've approached Lyme. I hope you will continue to go uphill.

Working in my garden is my best therapy. Only problem is that I live in the Pacific northWET, where we have several months of rainy weather. I am getting a greenhouse this fall so I can extend the season and can work out there when it's raining. In some parts of the country, gardening is risky with all the ticks and other biting insects there are. I have several insect eating birds around and bats that go after the mosquitoes and Frogs get the larvae. I'm an organic gardener, so that helps keep the insects in balance.

Enjoy feeling better!!

Girlie said...

misty51 said...
Dacarte3, I understand.

After having read a ton about this disease in peer-reviewed literature and watching the documentary, I still think that the illnesses that come (or stay) in the aftermath of Lyme treatment occur as the result of damaged tissue and immune system dysfunction in the wake of damage by Bb, not that the bacteria are still proliferating. This is just my opinion, and I know that it is very controversial and many will argue about this. I think it takes a long time for the immune system to return to a normal balanced state and for the myelin of the nerves to regenerate (as well as other tissues to heal). Healing in and of itself is tiring and the body takes awhile to do it.

Also, I think that this mental approach is healthier for all of us. If we constantly think that bacteria are overrunning our systems, we aren't sending the best messages through the HPA axis. Just my two cents.

I agree, there may be damage that time will heal....but there are countless stories of people stopping treatment too soon - when they are at 80 - 90 % better....only to relapse as the infection proliferates. Old symptoms return with a vengeance in many cases.
For a chronic infection...one or two months of treatment is not usually enough.

I had to stop treatment for other reasons (not because I thought I was fully healthy). But I go back on treatment next week.

Girlie said...
I had to stop a couple times, too. One break was 2 1/2 months...and I started to get old symptoms back.

I stopped for a Month and half. Thought I would get lucky. But after 4 weeks, symptoms returned and it built up over a few weeks and then this week a crash.

I almost made it too.

I'm glad I can go back on herbs next week.

Misty, from the sounds of it you probably have chronic Lyme that was somehow reactivated in the body this winter. I would agree its virtually impossible to get a new bite mid winter in nyc.

Given that you've probably had Lyme for a period of time prior to treatment, I think it's fairly unlikely that you'll achieve remission with 2 months of antibiotics. Buying into the PTLDS model might cause you to stop treatment early and relapse.

Definitely look into other approaches if you're worried about long term antibiotics, but relying on positive thinking alone is a tenuous proposition.

PS My docs think I could've gotten it on a hike over Xmas in NC. We had weird weather -- warm on and off (it was an Indian summer down there). I've also been to parks in NYC early this year and the weather was weirdly warm up here too on and off. My docs don't think symptoms past have anything to do with Lyme (a broken toe that caused pain in my leg) and that it was a brand new infection. My first attributable symptoms started in February (so I guess Xmas could've been when it happened or sitting in the grass in Central Park when it got warm a few times). I was also bitten by mice several times. Lab mice, but my doc isn't ruling that out as a source of sickness. They like to say that lab mice are very clean, but I can't imagine that there's not some pathogen risk at all. .

By the way, I know we could argue this out until the end and could both pull up ample papers on each side. As a scientist, I'm not a fan of in vitro papers because you can't correlate what happens in a dish to what happens in behaving humans. I don't think the weight is pointing toward chronic Lyme and I think it's a deleterious point of view regardless if we really want to get better. That mentality assumes we will always be sick because there will always be one type of the bug that will proliferate inside of us unless we take x combination of antibiotics for years and years. Meanwhile, on all these antibiotics, other organs are becoming compromised and the immune system is getting weaker. We're also constantly paranoid that these things are creeping through our muscles and tissues. That will exacerbate any anxiety that we already have and disrupt whatever signals we can send to our endocrine and immune system. Cognitive processes and signals are not moot. They directly interact through the hypothalamus with the anterior and posterior pituitary (which secretes a variety of important hormones). Hormones are sent to cells all over your body because of this interaction. It is not trivial. The signals that are sent as the result of your THINKING alter gene transcription and regulation; they alter the activity of your immune system. This is why antidepressants have been shown to increase immune system activity. There are molecular mechanisms underlying all of these processes.

Also, it's important to note that some people test positive for Lyme in endemic areas but never show symptoms because their immune systems are able to fight off the pathogen. It makes me think that even if there are inklings of spirochetes left, the immune system, if in a healthy state may be able to take them on by itself.

Regardless, this energy should be put into lobbying for more research funds for Lyme. The last I read, there's only 25 million of federal funds put toward this. That's rotten. The disease is only going to get more rampant and we should be fighting to get the money for scientists to understand it better. They may prove all of us wrong, once they have the resources.

Those are great points. I have a longer comment to follow.