posted
Here's my story posted from another section of this site:
Hi All...
*newbie with a story here- please don't shoot*
I was bit in Peru 5 yrs ago in the Amazon and just didn't think anything of it. Looking back, I started having some slight symptoms. Then last year I was bit and my Husband had to pull the tick out of me but that one wasn't in for very long-so, I'm not sure if it has anything to do with that bite. I could have gotten bit in between and never have known it... Who knows... but, definitely over the past year- I started getting sciatica, really swollen joints on and off,incredible joint pain... I do work 2 jobs and spend a lot of hours on my feet- so I never associated the pain with a disease.
I was an avid runner and started training for a half marathon in May- running 10 mile clips at a time, (I have ran many miles but never had done 10 at once)- and after a month of that my "good" knee just started giving out- I had a horrible time moving my knee-and I had to stop running in June. Then it progressively got worse, really fast from June til a month ago- when I had to drag my one leg while crossing the street b/c it was in so much pain and just wouldnt move. I literally felt like I was 95 and paralyzed!I went to visit my mom- and couldn't get off her couch. I just thought I was sore and hurting from being on my feet sometimes 15 hours a day ...I didn't equate it with being sick. My immune system was at it's ultimate low when I started hurting the most. I went on a quick 5 day trip with a friend to Scandanavia- where I didn't sleep or eat properly and came back to directly be thrown into working for 17 days straight. That's when I just knew something wasn't right. When I couldn't move my legs from my knees to my hips. I decided I had to stop being so stubborn and finally go to the doctor. I also felt like I had a fever- my skin wa sburning up for a few days- but whenever I took my temp... I seemed to be fine.
My doctor put me on doxy for 2 weeks before a lyme test- and after the two weeks, it came up positive. I was glad to have a diagnosis but also knew it was a long road ahead. I've been on Doxy for 4 weeks now (having to go through other specialists to get more anti-B's when my own doc said "sorry, you should be feeling better by now"-)
Anyway, I am significantly better than I was b/c I can move my legs now! But, I am still extremely tired, joints still sore- it moves around- so I never really know what will hurt from one day to the next ( As I am sure you are all well aware of) and a headache that just won't go away. My brain feels like I've smoked WAAAAY too much pot and can't remember what I was doing 2 minutes before.. etc etc The thing is, is that I look just fine... no one would ever know how much I'm hurting or how tired I am.
I did go to an Infectious Disease Specialist the other day- and was put on another month of doxy 100mg but this time it's 3x's a day instead of two. So, I will be tested again in 1 month and hopefully this next month I'll be back to my "normal" self.
I'm intimidated to stop the Anti B's b/c I'm afraid it will come back. I'm just going to keep taking the amazing immune supplements- stick to my lyme diet that I'm on, getting massages/body work, saunas, going to my healer friends, all while taking this doxy.
I do feel like I've gotten this disease for a myriad of reasons- and I am grateful for the lessons it is teaching me.
Has anyone ever seen 8 weeks of doxy cure lyme? I'm also terrified to become pregnant. I don't want to pass this along to a newborn. Also, can my husband get it from me?
I know there are people on here who are far more worse than I am but I am just feeling kind of sad today and need to reach other people. If you have gotten this far in reading- I send you a big thank you hug.
xxx, Moonchild.
Some advice/help would be appreciated. I'm currently on a Lyme Specialist waiting list- but WHO knows how long that will be since UnderOurSkin came out- he's kind of a big deal. I just don't know what else to do.
Posts: 15 | From NY | Registered: Nov 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to Lymenet!
If you post in seeking doctors, someone will send you a list of LLMD's near you so maybe you can see one sooner.
300 mg per day is a better dose of doxy. Typically, it takes longer than 8 weeks to work on someone who has had it a while. I'm glad it is making you feel better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for your help. I got a list of Doctor's and there is one in particular that I will try to go to Posts: 15 | From NY | Registered: Nov 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree. It sounds like you have a doc's who may
not know the way lyme behaves and how it has to be
treated. Your best best is to get to a LLMD asap.
While you tested pos. for borrelia that is a plus,
many patients get a lot more than borrelia from a
bite. If you decide to stay where you are
remember that borrelia can come back like its
sister syphilis. So if you experience symptom
return, do not dismiss as being nothing till you
get a lot worse.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
What if I start feeling better? Should I still go see a LLMD?
Posts: 15 | From NY | Registered: Nov 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
In order to avoid a possible lifetime of misery, I would see a LLMD even if you feel a little better.
Symptoms can creep back in over weeks, months or years.
It would be worth your time, effort and money now.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
oh yes, most definitely go. you'll have periods where you feel better and question yourself, don't.
better safe than sorry.
and welcome.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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It definitely seems like you are doing everything you can to support your immune system. so you have a good handle.
When should you stop treatment? Typically it's recommended that oral antibiotic treatment does not cease until 2 or 3 months beyond the point where your symptoms disappear.
Should you have any questions or need input, there are plenty of knowledgeable and willing people on here.
Oh--and if you notice, we pretty much all try to type in smaller paragraphs as it makes it easier
for those of us with neurological lyme disease to read. and therefore, help out Posts: 571 | From Massachusetts | Registered: Oct 2008
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Thanks for your help. I got a list of Doctor's and there is one in particular that I will try to go to 
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