Hi there. I will split this up for people who are Chronic and cannot digest long paragraphs.
I've read hundreds of posts here, and I think it's about time I posted my own experience for those who are interested in reading and/or commenting. I am 32 years old, male, in decent health.
I suspect I was bit August 16, 2010 while I was racing my ex-girlfriend's sister through tall grass on a farm in Hunterdon County, NJ. Fast forward to Labor Day weekend, where I drank for four days straight, and on the following monday I had the expected terrible hangover. Oddly, it seemed to metastasize into a flu. It was about this time I saw rashes. Three of them. Not knowing what the hell was going on, I started drinking apple cider vinegar like it was my job.
I went on 200mg/day doxy abx the 14th. My old high school buddy, now a cancer doc, prescribed me these meds, and like many doctrinaire ISDA types that people mention here, he told me ``21 days and you'll be fine.'' I started reading posts on here and elsewhere talking about how this wasn't enough, so when I got back to L.A. (I was on a road trip during all this), I saw an LLMD.
He put me on 400 mg/day doxy, Azithro, a pill that contains olive leaf extract, maitake mushroom extract, arabinogalactan and aloe vera powder, a powder composed of magnesium gluconate, d-ribose and malic acid, and 10,000 mgs of vitamin D. I've been on that extensive cocktail ever since the 23rd of September.
I've had 3 IV rounds of Rocephin and am due for the final one on Monday. This was done out of concern that the fact that I waited a month to seek real treatment could have set me back. For the last 3 weeks, I have been on a probiotic that is allegedly high quality. I use a brita filter, and I've recently started putting lemon in my water.
I got my Igenex results back in mid October and they tested CDC positive for Lyme, and negative for co-infections, although I saw one of Burrascano's powerpoint presentations that said that the coninfection tests are 30 percent accurate. Not looking forward to shelling out 900 total for another round of tests.
Compared to what I've read here, my symptoms are small potatoes-- I am tired quite a bit, I have headaches, a perpetually stiff and sore neck, red eyes, and memory lapses-- that said, I used to party like a rockstar, so it's hard to isolate if the memory flumboes are from Lyme alone. But that's about it.
My symptoms seem to not get any better or worse, and I have bouts of wondering whether I'm doing the right thing... My diet is sort of lyme friendly... I went to Mercola's website and am eating for the ``protein type''-- but I lapse, and eat carbs. I really try to stay away from sugar, but in the months that I've been doing this, I have binged on sugar a few times, and there have been a few nights where I drank booze, and one where I got drunk...
Since November seventh, I have been doing Vedic meditation (the kind where you use a mantra to forget thoughts and come to a place of stillness). There has been some greening on my tongue, but that comes and goes.
I thought that my fatigue may have been herxing until I saw a video on Youtube called ``Heather Herx.'' I no longer believe I am herxing. I've been exercising when I can bring myself to do it-- I just did a Bikram Yoga class and it made me extra tired for two days. I think I want to keep doing it though, because from what I gather here, at the very least it can bring the cystified bugs out into the bloodstream where they can be attacked by the ABX.
One thing all this reading has done has made me more wiggy about the time lag between my suspected bite date and treatment, and skeptical about a complete recovery. All due respect to the people who were screwed over for years by doctors before finding out...
This is my story. If you made it this far, you have my heartfelt thanks. I have learned a ton from a lot of people here who are deep in this struggle, and I give you my utmost support.
Comments, suggestions-- any and all thoughts are welcome. I want to get well.
All the best to you warriors...
--InundatedByInfo
** edited to remove dosage, please see Loub's post at the top of medical **
[ 12-07-2010, 10:58 PM: Message edited by: inundatedbyinfo ]
Posted by sixgoofykids (Member # 11141) on :
Sounds like you're on the right track and that you caught it relatively early.
How about yeast? How many organisms does your probiotic have? I see you're not on Nystatin .... you need to do something for yeast as it can cause the same symptoms as Lyme. Coconut oil, onions, garlic, etc. are good for preventing yeast. I'm sure others will have suggestions as well.
Posted by BoxerMom (Member # 25251) on :
First of all, if you were exposed in August of this year, your chances of complete recovery are excellent.
It is always possible that you had a dormant case already, and this is a second exposure, which would make you more sick and increase your length of treatment time.
Recent infections are often more virulent than those of 20 years ago. These microbes have mutated and evolved over generations and are much stronger than previously. Also, there are more co-infections in the ticks.
As for herxing, it is different for everyone. What you should get is an exacerbation of your own symptoms, not somebody else's. I haven't seen Heather Herx on Youtube, but I would not expect it to be relevant to everyone.
Your protocol is excellent. You have a good LLMD. It is highly likely that you have co-infections. Plan to stay the course for a few more months at least. And expect to fully recover.
Posted by inundatedbyinfo (Member # 28378) on :
Dear Sixgoofykids: I am on a probiotic that contains 20 billion combined CFU's of lactobacillus acidophilus, lactobacillus paracasei, bifidobacterium bifidum, bifidobacterium lactis, lactobacillus plantarum, lactobacillus rhamnosus, and 2 billion cfu's of saccharomyces boulardi. Whatever that means. I've been taking it with food, and away from the abx.
BoxerMom: I really hope this is not some kind of re-exposure. That said, it is good to hear that my protocol is excellent...
The herxing video I mentioned is violent, and matches some of the more extreme descriptions I've seen on here. It is the kind of thing that I could imagine sending someone to the hospital.
Thanks
Posted by Lymetoo (Member # 743) on :
Inundated... I would take more than the 20 .. whatever you can afford. I really have come to believe that we need about 100 CFU's per dosage.
I would also suggest taking them on an empty stomach. I take VSL#3 and it says to take on an empty stomach.
Bikram Yoga class .... Is that the one where you exercise in the heat??? I don't think that is a very good idea for Lyme patients .. but that's just my opinion. You could be overtaxing your system.
Posted by BoxerMom (Member # 25251) on :
My herxing has never come close to sending me to the hospital. Mostly, I get extreme fatigue and headaches. Sometimes a sore throat. Early in treatment, my herxing made me very spacey, like I was high all the time. That was pretty tolerable.
Posted by 17hens (Member # 23747) on :
"I am tired quite a bit, I have headaches, a perpetually stiff and sore neck, red eyes, and memory lapses..."
I take www.customprobiotics.com which are excellent.
Posted by inundatedbyinfo (Member # 28378) on :
Lymetoo-- Thanks for the info on probiotics. Can you reccommend a good one? Am I also supposed to drink kefir as well? Was in the grocery, and it seemed like all the kefirs had sugar.... As for the Bikram... i've seen it debated on here, and i've seen people claim to have their lyme treated completely by it... I'm approaching it sanely-- for instance, today was day 2, and i left early after a mild inner voice telling me to stop... I drink the ribose-d powder before class, and in class drink water with lemon and sea salt. If I get crazy day-after tiredness a few more times after doing it, I'll probably move to a more mellow form of yoga...
17hens-- my headaches originate in the back and make their way around-- classic tension-type headaches... but then again, i had tension headaches for years before I got lyme. Incidentally, around the time I was diagnosed with Lyme, I saw a chiropractor that aligned my axis and atlas with some strange machine that seemed like quackery at the time. The purpose of this was to cure these headaches, but the headaches are still here. So my headaches may or may not be due to the lyme. Per the symptom list, it would seem, if anything, that i have mycoplasma. I will check out custom probiotics...
Many thanks for the replies...
Posted by LymeAware (Member # 26195) on :
I just wanted to welcome you here, and encourage you on your healing journey. It sounds like you are in good hands and sometimes, particularly with lyme, these things just take time.
It's great that you caught this so early on, but I do know it's hard when you continue to still not feel well. Know that you are definitely not alone, and many of us here understand.
One thing I wanted to comment on is the heather herx video. I've seen those videos on youtube, and I appreciate them being available. However, I want you to know that herxing absolutely doesn't look like that for everyone.
Hers was a very pronounced, dramatic reaction. I have had herxes like that, but I have also had herxes where I felt more tired, or nauseous, or depressed, or.... Most frequently a herx will look like an increase in some pre-existent symptom, or a return of a symptom you had early on in the disease. So, they really run the gamut.
Really, the goal with a herx would be to have it be mild to moderate -- not severe -- so that it doesn't become dangerous. Herxes can be dangerous, but they can also be just plain uncomfortable. I wish they were neither, but just wanted to speak to that so you know that herxes can happen at many levels.
Best of luck.
Posted by onbam (Member # 23758) on :
i have all those symptoms. te headache, stiff neck, and burning red eyes all come and go together. weird, weird stuff.
Posted by Lymetoo (Member # 743) on :
Kefir is OK if you make it yourself. The store bought kind is full of sugar as you said!!
Posted by arkiehinny (Member # 26546) on :
Wow, you've really had a rough time. I do understand. I'm like you, caught it in the very early stages. I got it in May but didn't start aggressive treatment until July. I'm already off antibiotics and never was on IV, plus my Igenex test was negative.
I'm so well now, I did a ropes course Saturday. Even the pain in my elbows is alleviating. All in all, I was on antibiotics 4 months and 2 weeks. That's for early infection.
Hey, inundated by info, check out my ropes course video. It will give you some hope, you will get better! By the way, I'm deathly afraid of heights! http://www.youtube.com/watch?v=5hA-exWBukM Posted by 4Seasons (Member # 14601) on :
Just a note about kefir: you can use plain kefir. Trader Joes makes one that is reasonably pricied. Nicola McFadzean recommend kefir and whey protein powder in her book The Lyme Diet. You can add stevia to sweeten if the taste is too tart for you.
You are on the right track and it sounds like you are in good hands. Good for you for taking the initiative and getting educated.
If you don't start to improve soon, coinfections are likely the reason. If you don't want to pay for the testing, which is so inaccurate, your doc may want to try treating a coinfection your symptoms suggest you may have and see if the treatment provokes a herx reaction.
Good Luck to you.
Posted by inundatedbyinfo (Member # 28378) on :
I wouldn't say I've had a rough time compared to some of the folks on here... but it's good to see you kicking a** on the ropes course...
i guess what worries me is how unambiguously positive my igenex test is... thinking about getting a cd-57 done (isn't that how you can test for concentration?)
In any event, I don't want these guys forming cysts then deciding to come out and play years from now.
Lymetoo, thanks for the advice on the probiotics...
Posted by Lymetoo (Member # 743) on :
Oh, you'll form cysts.. everyone does. Just be sure to treat them!
CD57 just shows if you're immune system is down. Sometimes you can test HIGH and be very ill though. It's not all that valid.