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I just joined, I'm specailly being tested for Lyme



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07/03/2008 18:35
horsegirlsheadaches13
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Hello all. i just came here for some gentle support for the Lyme symptoms I carry and the so called 'NDPH' chronic headache i've had for 10 months. My family is having a July 4th campout without me because i can't sleep well and i'm WAYYY too tired to do anything. i feel like an alien on earth and I just want to be a normal 13 year old human being. I do live in NH a highly tick infested state and I was playing soccer in October when this all started. Being on the feild daily and the pure fact of remembering the tick should be enough, even though I didn't get the ring. Now I just have to deal with the stares from school members who pass rumors of me being cancerous and dead and such. I can hardly stand the half days i struggled through of school last year and now that I've proggresively gotten worse over the summer I don't know what to do about next year. I'm just tired and at the end of my rope. I am very close to giving up but the Doctor finally was persuaded to take the western blot test and some other blood tests. So many people feel like me but say they just have NDPH. I feel like I need to help spread the word to these people about these unknown truths of Lyme. Does anyone feel like me symptom wise or live nearby these woodsy areas like me? i am going to see a lyme literate doc. but not until after school has begun and ther is nothing we can do except wait until the test results are back and i'm shrivling away in the meantime. If anyone wants a better visual of how I feel, i am close in feelings and symptoms to a girl on youtube, just type emma7639 in the search bar and whatch her story.
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07/04/2008 02:37
jaime1978
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Hi sweetie,

I'm so sorry you are living this nightmare. First the good news, you are young! Which usually means, your immune system hasn't been as compromised as some others. First and foremost, stay away from steroids of any kind. They shut down your immune system. Giving free reign in your body to all the bacteria. And if your are unlucky like me, and have shots in your spine, it can activate dormant viruses (one of the most painful things ever)

start by building up your immune system, garlic is a powerful natural antibiotic, antiparasitic, antifungal, antivirul, it's amazing. also cats claw is great, also called sawmento (does not matter if it's toa free or not, that's all about money), also vitamin C is wonderful. you take enough to give you the runs, then back off, that should be your dose. exercise is imperative. I know you likely don't feel like it, but Bruscanno says you must do some sort of exercise.

I hope you get tested thru igenix, they are a great lab. If you need anything at all, let me know, pm me anytime.

jaime

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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07/04/2008 06:18
denise17
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Hello and welcome!!

We all feel your pain and frustrations with this awful disease. BTW what is a "NDPH" chronic headache? I agree with Jamie's recommendations until you see a LLMD.

Best of luck, Denise

Denise


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07/04/2008 07:40
horsegirlsheadaches13
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A NDPH headache is another way of saying new, daily, harsh, and untreatable head pain the is persistant. (NDPH=New Daily Persistent Headache) It's very silly and I don't understand it at all. I talk to many with My exact symptoms and Many people say they have NDPH. I have the exact symptoms though of many Lyme sufferers too. i personally think they have Lyme but *i don't even know yet if I have it. I am just very symptomatic. I g2g because i'm exhausted but Happy 4th everyone.
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07/04/2008 08:17
Clayton72
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Hi there! Welcome to our group. I was 13 when I came down with Lyme. I'm 36 now and was just finally diagnosed. The amount of damage that was done to my body is insane (organs, etc) so I'm glad you are taking the right steps now - it's VERY IMPORTANT!

If your test comes back negative, remember that many of ours did, too. A lot of us are big on the Igenex Labs for testing. I was tested at your age but the testing was so bad back then (it's not that much better now). Many doctors don't understand Lyme Disease. Very important to find a Lyme Literate Doctor!

I'm sorry you are having a bad 4th! BUT, just remember - Jaime is right - you are young and you can beat whatever it is that you have. Just keep a good attitude and keep researching!

Let us know how your test comes out!

www.igenex.com

www.truthaboutlymedisease.com

Clayton

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07/04/2008 09:52
melly
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Your symptoms are bad enough at any age, but they must be particularly depressing at an age when you should be carefree and having fun with friends.

Hang in there. And feel free to send a pm to chat anytime.

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07/04/2008 12:46
chickiechick
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Hello! First let me say that i am so sorry for what you are going through. Everyone here is so wonderful and sympathedic! I remember that headaches so well! I thought i had a brain tumor! they were just awful! i too never had the rash. I wish you the best. get lots of rest. Here if you ever need to chat or vent. we all can associate with what you are going through!!

Take care sweetie!!!

Teri, PA



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07/09/2008 18:04
horsegirlsheadaches13
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Hello everyone. i just went to a lucky cancellation appt. at my second opinion neuro and he said that he thought I either had fibromayalgia, or a thyroid problem. We really do think I have Lyme but we're keeping our options open and waiting til we see the LLMD. I wish we could see him before school starts back up because i can't relax until i have a diagnosis. i'm not a very patient person, and being miserable magnifies it by 100.

I was told that one of the biggest misdiagnosis of Lyme is fibro...... Anyone else in my position? I just met with a girl and her mom from NJ today, they came over. She feels the same way i do, except she has more cognitive problems, and she now is being treated after 3 years of illness. I am glad that we are trying to figure it out before the year mark, maybe I'll be on treatment before October, when this all first started.

I'm sorry to all of the people that had to go on a long time with this. It hurts me to just be in this situation now. i feel like nobody is understanding enough to help me, I feel like I'm all alone even though I acknowledge I'm not. i just need a nearby friend I can hang with and do activities with. i feel like a couch potato now, because it really hurts me to do anything. i try to fight through it but even doing the dishes tires me and makes me even more miserable. Is anyone on the same page? i just need some gentle comfort before I lose it. I am trying my best to hold it together but it takes all my energy and I just want to cry. Thank you all for reading, please take the time to let me know someone's there.

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07/09/2008 18:32
AnnF
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Hi Sweetie,

I'm so sorry you are suffering so badly. I've been through the very dark days of pain with my son when he couldn't get out of bed to face the day. All I can tell you is to not give up. I know you get tired of hearing that, he did too, but do all the research you can and hang in there. We're all suffering so we're in this together so hang on and reach out whenever you need it.

Take care,

Ann

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07/09/2008 18:51
denise17
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Hey there, You're first post on this thread said you were waiting for lyme tests to come back. Are you still waiting? Let us know how they come out and remember that even though they may come back negative you could still have lyme. Then you can try the Igenex tests even before you see your LLMD.

Take care, Denise

Denise
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