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CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 5/20/2010 5:01 PM (GMT -6)   
Hi there I am new to this forum, I will try to keep it short but i just wanted to know if anyone experienced anything similiar.

I was bit by a tick last spring, bullseye rash and everything, experienced dry irritated throat all summer 24/7 it was so annoying and still comes and goes...just assumed it was the air? to this day i get infrequent headpain, extreme fatigue but it seems to come and go, also shortness of breath but again i have experienced this in the past even b4 last spring, as well as infrequent dizziness and blurry vision, which AGAIN i do wear contacts and i cant tell if just need new contacts or what lol becuase without them my vision is always blurry.

so anyways, those are basically my symptoms but the major symptom is arthritis. I am only 26 years old and about 8 months ago started having joint pain, its now at the point i cant get out of bed in the morning. its in my fingers, wrists, shoulders, knees, ankles and feet/toes. its excruciating, i have two children under 3 which makes it extremely frustrating. The dr recently put me on celebrex wich i dont want to be on for long but at this point i dont have any other options its the only thing that lets me function. the dr gave me a lyme disease blood test it came back negative and when i asked if a false negative was possible he said it was very accurate (um ok). another thing he said was that according to my results it looks like ive never been exposed to lymes...what does that mean? does it mean that no bands were present and if thats the case would that mean i dont have it for sure if not one band showed up? in the meantime im going to request the lab results but, id like to know if anyone has experienced similar symptoms as far as the arthritis goes and what the dr said about my test (the only thing the test showed was a high cprotien marker? something like that and also negative for rhuematoid arthritis and lupus etc)

thanks for any input im at a total loss of what to do next as far as drs go, they just dont seem to care

Kodak
Regular Member


Date Joined May 2010
Total Posts : 74
   Posted 5/20/2010 6:07 PM (GMT -6)   
HI CMRB and welcome.
I'm fairly new to this forum also but I know this is a very knowledgable and supportive group. Your in good hands here.
I'm no expert but, judging by your symtpoms it sounds like lyme symptoms. Did you get the CDC test or the Igenix test?
Igenix seems to be more accurate. Also, it doesnt sound like your doctor is a Lyme Literate MD. YOu'd ptobably want to find one near you.

I'm sorry you are suffering and in pain. I hope you find some relief soon.

Peace and Blessings

betterhealth
Regular Member


Date Joined Mar 2010
Total Posts : 230
   Posted 5/20/2010 6:31 PM (GMT -6)   
Hi CMRB,

Welcome to the lyme forum. Sorry to hear that you are not feeling well and find the need to be here. I agree with Kodak, save your self a lot of aggrevation and find a LLMD in your area for a proper diagnosis. Given that you are aware of the tick bite and developed the classic rash, I would highly suspect that your symptoms are Lyme related. Everyone has a slightly different story to tell regarding their Lyme experience and symptoms. I personally experienced joint pain in my left elbow and wrist and in both knees. Earlier treatments with antibiotics helped to resolve most of my joint pain. I'm now dealing with mostly neurological issues which include neuropathy, muscle twitches and processing difficulties.

There are folks here that can help you find an LLMD if you need assistance. I hope that you get some answers real soon.

Let us know how we can help!
Peace and Healing
Lyme Disease - Doxycyline, IV-Rocephin, Amoxicillin, Azithromycin.
 
 


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 5/20/2010 6:51 PM (GMT -6)   
Hi CMRB,

Sorry for all the suffering you're going through. You symptoms sound exactly like mine before I was diagnosed with lyme disease after suffering with it for ten years. No doctor could figure out what I had. My arthritis doctor said I had arthritis and gave me pain pills. Long story short, I went to see a Lyme Literate Medical Doctor (LLMD) and finally got diagnosed with having lyme disease.

There's no doctor who is going to be able to tell you if you have lyme disease except for a LLMD. All other doctors, including most Infectious Disease doctors, will down play lyme disease or tell you it doesn't exist, etc. I can tell you something definite that your doctor should have told you if he knew anything about this disease--you DO have lyme disease. Your tick bite with the bulls eye rash is all the evidence needed to determine that.

What you need to do now is see a LLMD, the sooner the better. What you are experiencing now is nothing compared to how you're going to feel if you don't get treated soon. The longer you put off treating lyme disease the more difficult it is to treat. Time is of the essence. Find a LLMD and get a Western Blot test from Igenex and let your LLMD treat you according to how he/she feels you need to be treated.

By the way, what kind of test did your doctor give you to determine that you don't have lyme disease. Was it an ELISA test? That's what most non-LLMD's use and it's the most inaccurate test there is for testing for lyme disease.

If you'll click the email icon next to my name and send me an email, I will provide you with links to websites where you can get some LLMD referrals in your area.

The good news is, it's not too late. You can get better!

Gary

daisyrlb
Regular Member


Date Joined Jan 2010
Total Posts : 277
   Posted 5/21/2010 11:25 PM (GMT -6)   
CMRB,

Thanks for sharing your story. So sorry you are feeling so bad. Better days are ahead!!

You're young, you have your whole life ahead of you. God made the body in an amazing way to be able to heal, given the proper tools you'll be on your way to better health before you know it. You CAN get better just like so many other people before you!!

In my opinion (and don't just take my opinion do a google search) you do not have to wonder if you have Lyme Disease. If you had the bulls-eye rash--you have Lyme Disease. That rash is very unique to Lyme Disease only. Beyond that, unfortunately, you have classic symptoms.

You can also google the Lyme Disease test results, you'll find they are accurate 50% of the time (hello?! how reliable is that?).

The sooner you get help, the sooner you'll be feeling better and have your life back--and that is really great news!!

CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 5/29/2010 10:52 AM (GMT -6)   
Hi thanks for the replies it means alot being shown some compassion and i really really want to get better but it can be so discouraging sometimes, but i really do believe better days are ahead thank you. I live in BC, canada but would be willing to drive to the states, whatever i have to do. I tried searching for any kind of lyme support in canada but just came up with some basic info sites no forums nothing and definitely no llmds. The next step for my dr was sending me to a rheumotologist, but it apparently can take 6 months to a year to get in just to see him, i dont feel like i have that kind of time just to be ignored and put on more medication. Especially this morning, i feel like my joints and body are literally just being eaten away so swollen and so painful and the strangest sensations.....anyways from what ive been reading a low carb and sugar free diet is the best approach as far as nutrition, mine is probably the opposite so that is going to change today. Thanks again for the replies, i try to look on the bright side, i may not be able to use my arm, or walk, but at least i have an arm and legs lol (a little morbid i know, but somewhat comforting) GWB i will be emailing you thanks.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/29/2010 11:18 AM (GMT -6)   
CMRB,

Your symptoms are quite possibly from Lyme/coinfections, especially since you had the bull's eye rash. Email me - I can give you a list of LLMD's in Washington State.

Also, check out http://canlyme.com/

Take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently on TPN due to bowel problems.
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Milk Thistle, Magnesium, homeopathy.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/30/2010 12:49 AM (GMT -6)   
CMRB,

I sent you email - let me know if you didn't receive it.

Take care,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently on TPN due to bowel problems.
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Milk Thistle, Magnesium, homeopathy.


JCat
Regular Member


Date Joined Sep 2007
Total Posts : 70
   Posted 6/1/2010 11:32 AM (GMT -6)   
Hi CMRB, I live in BC too and was initially told I had Rheumatoid Arthritis. That diagnosis didnt' sit right with me because I was perfectly healthy before it all happened. I also had fevers, joint pain, night sweats and a chronic sore throat. I went to my regular GP and asked him to test me for mono. I didnt' know much about anythign at the time but each time the results were negative. After doing some research I found a doctor here in Vancouver and he prescribed antibiotics to me. After 3 months I went into complete remission. I had no symptoms of any kind. Even the joint pain was gone. Oh I forgot to say that he gave me a clinical diagnosis of Lyme Disease. Unfortuantely this doctor was forced into retirement and I couldn't find a doctor to prescribe them to me anymore. That was about 3 years ago and I had just been taking the toxic drugs the rheumy prescribed to me. Not gettign any better just managing the pain and other symptoms. A few weeks ago I found a naturopath in Vancouver who sent my blood work to Igenex labs and I got a positive Lyme diagnosis. He knows of a dr in Vancover that will treat lyme with antibiotics as long as there is a positive blood test even if the test is from the states. So I have jsut started taking them again along with some herbs etc that the Naturopath prescribed. So I am feeling very encouraged right now knowing what taking the abx did for me last time, except I didnt' take them long enough to completely eradicate the disease. I forgot to mention that I stayed in remission for 3 months after I stopped taking the abx. If you private message me I would be happy to give you the name of the Naturopath I am seeing.
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