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Old 09-05-2008, 07:55 AM   #1
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misdiagnosed for two years.

Hi,

I was diagnosed with lymes disease in May 2008, after having it for two years. I used to dance ballet, 6 days a week, for about 24 hours a week...i really loved it. I was strong and extremely thin, I weighed around 107 pounds and was 5'5 and very lean. I would eat a normal amount though. Then I was diagnosed with migrane headaches in April of last year, followed by Mono after getting two blood tests, shortly after and ended up missing a month of my freshman year in highschool. Then I sort of recovered from it. I continued dancing over the summer and improving.

Then I came back to start the year at my dance studio and my dancing began to worsen. My teacher (who was a strict russian) told me i needed to watch my weight because i put on about 6 pounds. I started eating much less and watching my calories, but i ended up gaining even more even though i was exercising a lot and not eating very much. I went vegan and tried eating even less. I kept feeling sick and tired, and bloated, and i would throw up sometimes and my vision would get really bad.

The teachers at school thought I had an eating disorder and was very depressed because apparently I had no color in my face, they sent me to a phsycologist who put me on Zoloft. I eventually refused to take it because it made me very flat emotioned. I kept expressing to my pediatrician that I believed something was really wrong with me. But she just sent me to other doctors who didn't know what it was eather. My blood tests would come back "completely normal". Although I did have one strand of lyme, but that wasn't enough to apparently have it, so the lyme came back negative.

I continued getting worse, and I was now up to 128 pounds by Febuary, and I still wasn't eating much. I was losing muscle mass too. I didn't want to look at myself in the mirror, I hated how I looked, especially in a leotard. They made me an appointment with a phsyciatrist, to put me on more anti-depressants.

But then my mother took me to acupuncture. And I felt a tiny bit better...a little less fatigued. And at the Acupuncture place I go to, there is an M.D. who specializes in Herbal Medicine. She spent two hours with me and said that she believed I had lyme disease and sent someone to my house to get extensive testing from california. By this time, I had been pulled out of school and was on home and hospital. My boyfriend at the time broke up with me because he thought I was practically crazy. They came back positive, and I was put on 4 doxycycline a day.

I got into houston ballets summer intensive back in January, and I really wanted to go because its an elite dance program. So I went and I ended up not having the best time because my dancing was getting worse, despite dancing all the time. I just had lost too much muscle and whatever I tried to do, I couldn't get it back. When I got home I had to make the decision to quit dance, there was no way I could have a career, because by the time I got better and was able to build muscle back, I would be too far behind to catch up with the elite dancers. So I got my GED, and I am not attending Community College, getting a degree. Lyme disease definately effected and changed my life drastically.

I am still very sick, and I am still sore, tired, and gaining weight, despite according to my doctor not eating enough. I believe that it is water retention because my fingers are all fat and my face was really puffy. I still exercise for an hour a day. Its going down a little bit, and because of all the vitamins I take now I grew two inches. :], I just really want to fit back into my clothes and get my confidence back. I get in all my nutrients now a days, but I eat extremely cleanly, and I eat gluten-free and vegetarian.

I just wonder, If anyone else had lyme and weight gain and once they recovered, if they were able to lose all the weight. Because I am naturally very small boned and it doesn't look right to be 135 pounds on my body. I just want to look and feel like my old self.

 
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Old 10-08-2008, 01:21 PM   #2
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Re: misdiagnosed for two years.

Hi my name is melanie I have a 8 year old that has a swollen knee so the doctor sent us for blood work everything came up fine except one of the bands on his lime test said present and abnormal the number was p41 i was really wondering if u remembered the number and what the other test was that found it
thank you so much for ur help
melanie

 
Old 10-09-2008, 09:32 AM   #3
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Re: misdiagnosed for two years.

my p41 band was the only one unequivocal/abnormal in my original standard lyme tests (so they diagnosed it as negative), what diagnosed me officially was specialized tests but those aren't covered by insurance and are like 1000 bucks. and i had a lot of swelling, and some definitely in my knees.

Last edited by xopikos; 10-09-2008 at 09:33 AM.

 
Old 10-10-2008, 05:47 AM   #4
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Re: misdiagnosed for two years.

thank you for your information it helps more then u can imagine
melanie

 
Old 10-12-2008, 12:03 PM   #5
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Re: misdiagnosed for two years.

no problem, im glad i could help :]

 
Old 10-18-2008, 12:57 PM   #6
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Re: misdiagnosed for two years.

Hi there--I'm so sorry you are coping with Lyme disease; it sounds like it has been very hard & also has greatly affected your dancing prospects. I just wanted to say it really is OK to weigh 135 at 5'5''...even if it's on the heavier side for you, it is still totally normal and healthy. 107 is probaby too lean for 5'5"...I'm also 5'5" and have weighed everything from 93 to 138...yeah, I used to have an eating disorder, and it's possible that you may as well. Dancing is a well-known risk factor for eating disorders (I also dance). Anyway, I just wanted to say it's worth looking into...so many women waste so much time worrying about calories and body fat, etc., etc. I wish you well!!!

Violet

 
Old 10-19-2008, 02:01 PM   #7
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Re: misdiagnosed for two years.

Quote:
Originally Posted by violet6 View Post
Hi there--I'm so sorry you are coping with Lyme disease; it sounds like it has been very hard & also has greatly affected your dancing prospects. I just wanted to say it really is OK to weigh 135 at 5'5''...even if it's on the heavier side for you, it is still totally normal and healthy. 107 is probaby too lean for 5'5"...I'm also 5'5" and have weighed everything from 93 to 138...yeah, I used to have an eating disorder, and it's possible that you may as well. Dancing is a well-known risk factor for eating disorders (I also dance). Anyway, I just wanted to say it's worth looking into...so many women waste so much time worrying about calories and body fat, etc., etc. I wish you well!!!

Violet
yes I totally understand where you are coming from. I do not have an eating disorder, and the only time I did was when my lyme was getting very bad and I could not combat the weight gain. I am actually currently 5'7 and 130 pounds which I am trying to be okay with. I eat very healthy and definately don't have an eating disorder, although dance definately distorted my body image.

 
Old 10-25-2008, 10:38 AM   #8
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Re: misdiagnosed for two years.

So sorry you have gone through all of this.

In terms of the weight gain, I know how it is to be small boned,etc. I am 5'5 and usually flucuate between 103-107. When we are used to see ourselves with more weight on we tend to freak out some. What is important is that you get on the road to recovery so you start to feel better. Once you are feeling better your energy will be restored and you can get back to where you want to be.

How long have you been on the meds for?

I have not been treated for lyme. I woke up one day out of the blue with pains jumping around my body, vibrating feeling in left leg, extreme joint cracking and now muscle twitches. I only tested pos for band 31 and 34 and 41 came back IND on the IMG sooo no dx

 
Old 10-27-2008, 08:37 AM   #9
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Re: misdiagnosed for two years.

I was on medication for 9 months, and now I am just on herbal medications to strengthen my immune system and such. I am glad that someone understands my struggle and can relate. At this point I am hoping I can start dancing again in January, assuming that my joints aren't awful and the weight is slowly coming off.

If you have lyme, it can be treated on its own if you eat really well and relax a lot, but if it is misdiagnosed for a while, your chances of recovering that way are very slim.

 
Old 10-27-2008, 10:16 AM   #10
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Re: misdiagnosed for two years.

Can you describe what your joint pains are or were like--ie-shooting, stabbing, or just achey etc..

 
Old 10-28-2008, 12:24 PM   #11
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Re: misdiagnosed for two years.

Like you I only had the band 41 positive in the country I am now living and they told me I didn't have lyme.

I sent my blood out to Igenex and will have my results back by next week or so.


I use to be very athletic, I lost alot of muscle mass from not being able to move around actively and gained alot of weight at one point many years ago.

I was also diagnosed with pre-diabetes which was why I was eating so much and gained weight. Diabetes doesn't run in the family and someone thinks that may be lyme has something to do with it.

Like you I only eat seafood and no meat, and I control my sugar intake lost about 30 pounds at one point yet I gained back about 10 pounds.

What is the doctor saying about the weight gain? I assume that with all that dancing, food and weight control, that would have kept your weight down superficially.

What's the most important is to gain your health back and don't worry about your weight for now. Just eat healthily, finish your studies. 135lb for your frame is not a whole lot of fat! Just slightly on the heavier side if you have been so thin from all that weight control.

You can always lose weight yet you don't have the luxury to be ill.

Are you seeing a Lyme literate doctor?

 
Old 10-29-2008, 08:30 AM   #12
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Re: misdiagnosed for two years.

My doctor basically told me that the weight is just swelling and water retention and the fact that I did have a hypo-thyroid condition for a while. It is slowly going down and my weight is slowly reducing. Because I am so small framed the extra weight looks awkward and hurts my joints even more. The muscle I lost was ironically when I was dancing 7 hours a day, I was working out like crazy, not eating as much as I should have and still putting on weight. But I have faith, things are slowly returning back to normal and I am slowly returning back to my old self :]

Quote:
Originally Posted by Nexis View Post
Like you I only had the band 41 positive in the country I am now living and they told me I didn't have lyme.

I sent my blood out to Igenex and will have my results back by next week or so.


I use to be very athletic, I lost alot of muscle mass from not being able to move around actively and gained alot of weight at one point many years ago.

I was also diagnosed with pre-diabetes which was why I was eating so much and gained weight. Diabetes doesn't run in the family and someone thinks that may be lyme has something to do with it.

Like you I only eat seafood and no meat, and I control my sugar intake lost about 30 pounds at one point yet I gained back about 10 pounds.

What is the doctor saying about the weight gain? I assume that with all that dancing, food and weight control, that would have kept your weight down superficially.

What's the most important is to gain your health back and don't worry about your weight for now. Just eat healthily, finish your studies. 135lb for your frame is not a whole lot of fat! Just slightly on the heavier side if you have been so thin from all that weight control.

You can always lose weight yet you don't have the luxury to be ill.

Are you seeing a Lyme literate doctor?

 
Old 10-29-2008, 08:31 AM   #13
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xopikos HB User
Re: misdiagnosed for two years.

The pain is all the the above, sometimes Ill randomly get shooting pains in my ribs, and my back is always aching, and I will get shooting pains in my neck and shoulders as well as my elbows and knees sometimes. It usually is shooting pain and then sometime is dulls into an aching when I am more relaxed/ on anti-inflammitories.

 
Old 10-29-2008, 10:21 AM   #14
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Re: misdiagnosed for two years.

I have an array of symptoms that is shooting/stabbing pains mainly in my toe/s, ankle, finger/s, hands, and sometimes my spine-these pains typically jump around and normally hit an area for a few minutes. I get vibrating/tingling in my left foot, have EXTREME joint cracking, left eye pain. For two months I have had widespread muscle twitches and now my pointer finger has been numb for two days.

My MRIS have been clear aside from cspine stenosis which could cause SOME of this. However if the NS does not think it is then my PC wants to do a spinal tap to further rule out MS (apparently clear MRI's mean nothing in terms of not having MS), in addition, I go back to my Lyme dr in a few wks.

 
Old 11-03-2008, 11:31 AM   #15
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Re: misdiagnosed for two years.

im sorry to hear that, spinal taps are very very painful, i couldn't walk for a week after i got mine.

i had the numbness, and i still kind of do in my fingers and feet, its very painful as well, but it's slowly going down...so maybe it is lyme, lyme in your joints doesn't come back diagnosed on the original local lyme tests...at least in my case.

i hope that it all works out and you finally get a diagnoses and get better,

best wishes.

 
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