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Old 11-14-2008, 08:48 AM   #1
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jmf860 HB User
25 year old "newbie" lyme disease?



My name is Jenn & im 25 years old with quite a bit of pain & problems, that i now believe is lyme disease, or maybe candida?? more likely lyme by candida is also a relm im goin to explore & rule out asap. So my story started about 2 years ago & 2 years later, here i am with no diagnosis. My problems started off with my head being really messed up, migraines, pain, stuffy, you name it. So my doc at that time said allergies. was put on something (cant rememeber) for that, seemed to help a little bit for a little while, then came back worse a few monthes later. so then diagnosed with migraines, put on low dose topamax. that helped a little for a little while, a little bit, but not much help. so at the time i was also on low dose progesterone only b/c pills. i stopped taking them to see if that would help my migraines and it did a little but after stopping the b/c pills my body has been a little at of whack since then. and that was about a year & a half ago now. So a few monthes later i get diagnosed with mono. ugh!! that was not fun AT ALL, i was down for about 3 monthes straight from that, just sleeping & sleeping and body aches and sleeping some more, i barely remember those 3 monthes of my life. So once again i was a little better for a little while after that, but never really "normal" still got migraines here and there, still felt sick alot, and about 3 monthes after my mono incident i felt like i got it all over again, was exhauseted and felt just ill & like crap, so they said maybe u do have it again or maybe its a virus, let its run its course. so i did, a month or 2 later, back to my normal, which is crappy. and ever since then ive been expierencing lots of things. been to so many doctors appts or specialists, and every month for awhile my symptoms seemed to appear almost to the exact day on the calander every month, so we look into hormonal problems and my cycle, they think it could be endometriosis. which fine, it may be, for those symptoms that i have, and im suppose to go see my ob/gyn this tuesday to talk about having the laproscopic procedure done to relaly see if those are whats causing my excrutiating pains every month. but besides that these are my current problems ive been haveing for the past year now but getting worse as time passes by.................
-numbness, tingling feeling in my arms & feet (left side the worst)
-nauscious (everyday), never ever throw up, just nascious
-brain fog
-spacey or unfocused
-i now i have swollen knees (left side worse then right, noticeable side)
-muscle pains here there & everywhere it seems
-heart palpatations from time to time
-chest pressure from time to time
-back of my head to my neck feels stiff
-tired, fatigued alot
-bed ridden alot of the times because of all this
-feeling like ur exhausted when i havent even done anything yet

im probally forgetting some stuff, but thats an insight of what i feel like ALOT of the time.
I see my regulare doctor on an average about every 2 weeks to try n figure out whats goin on. or to talk about results from various tests we preform, and no diagnoses yet. ive had every "regular" blood test done imaginable, ive been tested for lyme like 2 times and even crazy uncharacteristic blood work done, ive had xrays of this, ct scans of that, ultra sounds of various places, recently had my hormones tested cuz i really thought that was a big problem, but once again came back "normal", thyroid, progesterone, estrogen, cortisol, went to see an orthopedic specialist for my knee cuz at first we thought i injured from playin basketball. Seen a ureologist becuz i have lots of recurring UTI's, but think its assciated with sex, so was givin medicine to take jus for when i have sex to lower my chance of having one come back again. next i go to my ob/gyn on tuesday, then my doctors appt the follwing week to talk about getting more in depth test for lyme done & then im waiting to see a rheumatologist on dec11th.
So, thats where im @ and what i go threw almost everyday. its very frustrating and i was out of work for almost a year & a half because of all of this, and i went back to work about 4 monthes ago and now just a few weeks ago, had to let go of that job as well, do to my health, pain & problems. i need an answer, and hopefully it will come soon enough. Thanks for listening and any input would be helpful & appreciated.
- <3 Jenn

 
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Old 11-14-2008, 08:50 PM   #2
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velvetw HB User
Re: 25 year old "newbie" lyme disease?

Jen, ask your doctor to test you for Lyme again, but not by two-tier testing. Go straight for the IgG and IgM western blots - they're much more informative. Western blots will show whether you're producing antibodies that are highly specific to the bacteria which causes Lyme. A good lab to use is Igenex. If he has any questions about the reliability of this lab, he can review their certifications and proficiency testing scores on their website.

The symptoms you describe are common in late Lyme disease. I would definitely get another test.

Last edited by velvetw; 11-14-2008 at 08:51 PM.

 
Old 11-20-2008, 02:13 PM   #3
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hypoT HB User
Re: 25 year old "newbie" lyme disease?

i'm 21 and your story just described the past 2.5 years of my life! it's sooo awful--I feel your pain

Anyway, I'm curious as to what thyroid values you had tested. My thyroid tests came back normal for two years until I found out they were using antiquated tests!!! Did they test your freeT3, freeT4, and reverseT3?? Normally, they just check totalT3 and totalT4--which I was normal in for years. The newer tests showed just this month that I'm severely hypothyroid (possibly Hashimoto's). Although, I'm still getting tested for Lyme as well.

For a while, I thought I had Lyme b/c the hypothyroidism and Lyme actually share a lot of symptoms according to websites I have read. Take a look at your old labs and see which thyroid tests they did. If they didn't do freeT3/T4, reverseT3--I'd have them checked.

Best of luck!

 
Old 11-21-2008, 01:27 PM   #4
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jmf860 HB User
Re: 25 year old "newbie" lyme disease?

im not sure if it was freet3 & t4 or what. it probally was knowing my lucky, everything seems to show up "normal" as the doctor says. i go back to see her this monday anyways to discuss further testing for lyme, re-testing and i will talk to her about re-testing my thyroid, free T3/T4 and reverse T3. plus thyroid antibody tests. She usually test for whatever i ask for, i jus dont know if she'll give me trouble with re-testing. we'll see soon i guess. so what do you go threw? has it interuppted your life? can u work? do u have "good days", bad ones? do u have any joint, knee swelling? jus curious, and did u see an endocriniologist or just blood work from ur primary care physcian and came back with the thyroid problem?

 
Old 11-23-2008, 02:48 PM   #5
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Re: 25 year old "newbie" lyme disease?

Jen, I skimmed through you posting and I have to say go to a LYME specialist as soon as possible. Most doctors refuse to diagnose lyme, unless you like in a very wooded area. The minute you say that you dont go out much they knock out lyme.
You should not be feeling this way so young. Im 22 and I felt like I was 50 when I had lyme. I'm from CT too. There are a number of lyme doctors in the area.

 
Old 11-24-2008, 11:31 AM   #6
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jmf860 HB User
Re: 25 year old "newbie" lyme disease?

i cant afford a lyme specialist. if they dont take state insurance, i cant afford it. i jus went to my doctors again today and shes gona test me for western blot, bartonella (cuz she already checked all the other co-infections except for that one) and re-test the regular lyme that we did a couple monthes ago. plus free t3 & t4. so after these tests, if they come back "normal" then shes gona send me to the infectious disease doctor. and trust me i know, i been feelin like im 50 for the past 2 years basically.

 
Old 11-28-2008, 12:50 PM   #7
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Re: 25 year old "newbie" lyme disease?

Jen...

What you describe could very well be Lyme, but I also went throught h*ll like you have for a very long time and eventually a rheumatologist diagnosed me with fibromyalgia. The brain fog and the pain you are having sound eerily familiar to me...almost like I am back to the beginning of it all over again. I was out of work for 6 months until I was finally able to adjust to life and live like a normal human being again. Don't get me wrong, I still have horrible days, but after getting the right combo of meds, it made the world of difference. Right now, I am seeing my gyno because I have had awful abdominal and pelvic pain for years and we are pretty sure that I have endometriosis.

I know what you are going through...it isn't fun, and most...if not all people...don't understand at all. Most of the time I just feel like shaking them and telling them that there really is something wrong with me, but no matter what I do, when you have "normal" test results, they start to look at you like your crazy.

Anyway, I hope you have been able to find some relief since your last post.

gaudet2

 
Old 11-29-2008, 07:43 AM   #8
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jmf860 HB User
Re: 25 year old "newbie" lyme disease?

Hi, thanks for posting. Well, not much of anything has changed since my last post. i go to see my obgyn on monday to talk about the pre-op for my laproscopic procedure that will be done on dec.17th, im very nervous about it but also happy to get it done that way i can no exactly if somethings really wrong with all that stuff. ovaries, endo, apendix and what not. so we'll see what happens. im real nervous tho. and jus waiting for my regualr doc to finish the lab paperwork to re-check the lyme, bartonella, thyroid freet3 & t4 and a couple other things. then waiting to see rheumatologist on the 11th. so just waiting at the moment for the things that are coming. hoping ill get some kind of answers soon. atleast within the next month, cuz ive about had enough of all these millions of different pains, n what nots that i expierence every single day.
so, how do u no thats its def not lyme for you. what are or were ur symptoms?

 
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