posted
Hi! I am new to this forum... to Lyme... to ticks. As of 2 weeks ago, I'd never seen a tick in my life. I saw a gray scab/blackhead and tried to scrape it off; it came off on the 2nd try. It was more brown than it first appeared on my skin. The only reason I didn't flick it off my finger was b/c I was impressed with how it was such a perfect circle. Then suddenly I saw that it had perfectly symmetrical lines coming out of it, which I thought was so odd. And then I realized it was a bug... and I don't know how it occurred to me, since "we don't have ticks around here" (and "we certainly don't have Lyme around here"), but I realized it was a tick.
I'll make my story short. Basically, I'm wondering what I should know - What do you wish you would've done? What is a good action plan for me at this point?
March 15 I found the tick. I am guessing it had been there for 1-3 days. I went to my MD the next day who blew me off, and said to not worry about it unless I start having symptoms and then we'd talk. 2 weeks later I connected enough dots, and realized I was having symptoms. I called him, and he told me I was just imagining them due to anxiety. Trust me when I tell you that I do not have TIME in my life, nor enough caring enough to dedicate brain waves, to imagine symptoms. So I found a LLMD. (Thankfully, I have a friend who has Lyme, so he was able to find a local one for me. They sure don't advertise, do they? They're hard to find!)
I was having more symptoms as the days went on: -Headache for the last week (with no explanation). -Mood swings. -Brain fog. -Aching at bite site, with radiating aching/pain at that hip and down the thigh. -Clumsiness. My fingers have not been working well, weirdly. I've been spilling and dropping things. -My arm and hand muscles have felt weak. -Neck pain. -Frequent sighing. -Trouble formulating sentences. -Heart palpitations. I'm having to cough hard to get my breath back during a palpitation. -Sensitive to light & sound. -Craving sugar (more than normal). -Weak finger nails.
I noticed some of these things and thought that they're normal things that sometimes do happen. But all at once? A friend casually sent me a link to some Lyme symptoms, since she knew I'd been bitten. When I realized I had half of those, I researched a bit more and realized that some things I had noticed but didn't think anything of (fragile nails, frequent sighing, sugar craving) could be related.
So... I got to a LLMD. He is treating me. I'm on doxy. He's going to get back to me with what further he wants to do (fine with me - I like a thinking-dr). I'm also on good probiotics & Nystatin, to prevent yeast/gut backlash. I've only been on them for 24 hours, but the bite is now red, swollen, raised, and very itchy! Does that mean that the oral abx are attacking the actual site?
In the mean time... I found this amazing board! So I would love to hear from you what I ought to be aware of, on the lookout for, or what I should start pursuing. I'm open!
Thanks for any help. (And sorry for my wordiness.)
Posts: 7 | From USA | Registered: Mar 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Is this the first time that you know of that you had a tick bite or were exposed to Lyme or co-infections?
I think you handled everything really well by getting into a LLMD right away and not listening to the false info presented by your MD.
I think now it's a matter of seeing whether it was caught early enough to respond fully to doxy and if you also have other co-infections that may need to be addressed with other meds.
Do you go back to the LLMD after a certain amount of time?
posted
Thanks for your response. Yes, I'll be going back to the LLMD shortly (within the next 2 weeks). He wants to see how I tolerate doxy, and we're going to go from there.
Yes, this is the first time I believe I've ever been bit by a tick or exposed to Lyme. Since I've only been researching this for the last week, I'm not familiar with co-infections and what they are or how I would even figure those out.
If you want a big-picture view of my health, I will tell you this. My son has Autism, which we've been treating & reversing biomedically, and we are now chelating him which is yielding fantastic results. As such, I've learned a lot about heavy metals and I've done a lot of thinking back in my life, and I've traced some of my neurological and gut issues to two things: metal exposures as a tween/teen (plus all of my childhood mercury-laden shots), and lots of abx for frequent ear infections as a kid (and into college). I also have asthma.
I've gotten rid of my asthma by eliminating gluten & dairy in my diet. Great additional side effects of eliminating those things from my diet were: no more headaches, no more brain fog, much less acne, no more bloating, no more stomach pain, no more frequent-gas, not so clumsy, etc.
So... I do have some history with some of these tick-bite symptoms. BUT from all of my research over the last few years WRT Autism and heavy metal toxicity, I really think my pre-tick life-symptoms (which have been controlled for the last 2 years by a GF/CF (gluten-free, casein-free) diet) are separate from what I'm experiencing now since this tick bite. (ie: I realize that many people have had Lyme far longer than they ever realized. I'm not naive to that, nor am I close-minded to that thought. But it doesn't really seem likely that I'd have acquired Lyme previously.)
I do wonder, though, if maybe my body is more susceptible to those symptoms, due to my past, and so they were more easily triggered by this bite.
Posts: 7 | From USA | Registered: Mar 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
The co-infections each have a set of symptoms, but they overlap with each other so a good LLMD is needed to decipher which ones a person has. The main ones that people seem to have frequently are Bartonella, Babesia, Erlichia, Anaplasma and sometimes Rocky Mountain Spotted Fever and the new Fry bug.
There are other infections that cause problems too like Candida, mycoplasma, Epstein Barr etc. If your doctor is a LLMD, he is likely already evaluating your symptoms for the co-infections.
It sounds like you are already eating a great diet! I changed mine also while I was waiting for my LLMD appointment to gluten, sugar and dairy free.
It's hard for me to pinpoint an exact date where I was initially infected also. Several LLMD's have told me that I've had it for years and at first I was like no way, I just got sick like this!
I knew I had symptoms for years, but they were mild (joint pain and pretty bad fatigue) so I ignored them. I'm in the woods almost every day so I had a history of really frequent tick exposure. I should have went in earlier, but the reality was that I had limited knowledge of Lyme or the seriousness of it at the time. I would have gone to a regular doctor, and they would have tested me for every other condition known to man before handing me a negative ELISA and telling me to seek psychological help lol.
I don't think it matters too much how long you've had it as long as you have a doctor who's willing to treat you in whatever stage you're in.
One thing I would suggest is to keep a detailed log of your symptoms. Write the date along with any noticeable symptoms for the day and anything that has improved. Also, I like to keep track of what I eat each day so that I can make any connections between my symptoms and the food I'm eating.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
What dose of Doxy are you taking? Check with the guidelines that it is in range for Lyme treatment. Early infections are the easiest to cure, so it is important to get the proper treatment.
Do you know about the tips for taking Doxy? Do not have any dairy, magnesium, calcium, or iron within two hours of taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it.
Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for an hour after taking it or you can ulcerate your esophagus. Drink a full glass of water when you take it for the same reason.
Posts: 4682 | Registered: Oct 2000
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I'm doing 100mg 2x/day of the doxy. From what I've been reading (which I admit, since it's only been a couple days that I've been sneaking time to research, has been not a whole lot) it seems there are different camps of thought WRT an effective amount. My LLMD gave me this to start with, and is consulting some fellow LLMD comarades before determining my next steps in this journey. He said he wanted to see how I tolerate it (physically).
The first day I took it (Thurs afternoon), I felt so sick to the stomach for an hour afterwards... I actually used that opportunity to teach my kids how to dial 911 on my cell phone. :-/ But after an hour I was fine. And since then, it's not been so bad. Weirdly, my intense sugar craving seemed to stop instantaneously. Not sure if that's from the Nystatin or the Doxy. Also, my brain fog seems to have cleared (except when I'm really stressed).
I don't eat any dairy (nor take any supplements with calcium, mag, iron, etc.). My pharmacist did warn me about that, but I didn't realize listen carefully b/c I was trying to remember the other things she were saying that seemed to pertain more to me. I was thinking of eating some goat cheese - is that considered calcium? I suppose so. So the 2 hour rule - didn't know about that, I'll be mindful of it. Plus the laying down & nauseous. Good info - thank you SO much!
I have already started a log of symptoms - but thank you for the validation for that.
So I can consider myself Lymed? I was wondering if I do this ~60day regimine, if maybe I can consider myself over it all, and not have Lyme. (Wishful thinking?) Is it a "once you have it, you always carry it" sort of thing? Is it like the flu where once you get that strain, and finish being treated for it and are over the symptoms, you'll never get it again? Or is it like chicken pox where you probably won't get that again, but you might get something (ie: CP... shingles) related if exposed to a tick again? Or is it like diabetes - you just try to keep it under control?
I'm trying to wrap my brain around all this, while trying not to fall into denial. Thank you SO very much for helping me step through this process, and think all of this through. And I appreciate hearing your experiences too.
Posts: 7 | From USA | Registered: Mar 2012
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posted
Two things--a 60 day regimen will not cure you, not sure why you said that, but be prepared for the long haul. Goat cheese, and all cheese, IS dairy.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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