I was diagnosed with lyme disease when I was 12 years old. I took 30 days of antibiotics and was told your cured. Life went on as normal except severe headaces. I thought nothing of them.
It is now 18 years later and I am not sure how to get through my days. I have a full time job 2 young kids and a bunch of critters. My symptoms came on slowely over the last 7 years starting with carpel tunnel and changing all the time. The only consistant thing has been the carpel tunnel and the headaches.
With in the last 6 months I have developed severe pain in my neck, jaw, chest, and muscle spasms in my face followed by numbness. For years I have suffered with momory loss, numbness in my limbs, some joint pain and headaches it always came and went. It wasn't until recently that the pain has gotton to a point that I can't function normally.
After years of tests my doctor has diagnosed me with Fibromyalgia. When I asked to see a lymes specialist he refused because I do not have arthritis. Does anyone know if you have to have arthritis or if swelling and pain can come and go like mine. Thanks for any advice you may have.
[ 12. May 2008, 05:12 PM: Message edited by: Jennie30 ]
Posted by Tincup (Member # 5829) on :
Welcome Jennie...
Sorry to hear you have been feeling so badly and have so many demands on your time and energy too.
You said.. "After years of tests my doctor has diagnosed me with Fibromyalgia. When I asked to see a lymes specialist he refused because I do not have arthritis."
May I suggest...
Find a new doctor ASAP.
First of all, few folks have ONLY arthritis if they have Lyme. Many have the fibromyalgia symptoms... including myself. Arthritis, IF folks have it at all, can come years later.
Lyme can affect any and all organs in your body... and can cause symptoms that come and go... etc.
If you have a doctor who won't let you see someone else... I would be furious about that alone.... especially when you request to... then that duck-head you've been seeing needs to be tossed in the alligator pit for good!
AND kicked in the shins too... but you didn't hear that from me.
My GUESS is he/she is BIG time lacking in education on tick borne diseases... and/or... which is a shameful situation there alone...
They may already know they have misdiagnosed you at this point and won't admit it... or allow any one else to check you out in the event you may learn they have been REALLY stupid or REALLY evil and wrong... and if you were seeing someone else it could end up proving this duck is now liable for the damage done.
I've run into several ducks like you describe in the past.. and they can make your life a living nightmare.
In MY opinion... it is very possible you have Lyme and/or coinfections that this doctor has missed or undertreated. To prevent getting worse you really need to see someone who isn't... as my daddy would call folks who are stupid or lie... a "big fat ridiculous pig".
Others will be here later to join in... but in the meantime... know you are not alone.
And new member....
Happy Mother's Day!
Posted by imanurse (Member # 7022) on :
Hello,
There are plenty of groups in California that can give you a physician referral and emotional support.
Good luck and find a doctor who specializes in treating Lyme disease and has positive feedback from his/her patients.
Posted by luvs2ride (Member # 8090) on :
Good Grief!!! You are sooooo classic lyme.
I agree with everyone else. Fire your doctor. He isn't your warden.
Luvs
Posted by roro (Member # 13383) on :
unfortunately most doctors do not believe in lyme. you are going to have to find a LLMD (lyme specialist) and none of them take insurance, so you are going to have to go out of network.
meanwhile, you can ask your doctor to do a western blot test and put you on doxy until you can see a LLMD. but even if it is negative, you probably still have lyme.
fibromyalgia is not a diagnosis, it is just a name for a list of symptoms. if you look up a disease and it says they dont know the cause of it, then it is not a diagnosis. it just means they dont know what is causing your symptoms. many things can cause fibro, but its usually lyme.
Posted by METALLlC BLUE (Member # 6628) on :
You can e-mail me at [email protected] and I'll give you a list of doctors. You'll find someone who fits you.
-- Mike
Posted by Rianna (Member # 11038) on :
I have sent you a private mail of the LLMD I see in CA
Rianna
Posted by ladycakes (Member # 12619) on :
I would insist on seeing another doctor.
I was misdiagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Lupus, and MS.
I turned out to be very much positive for Lyme, and do not have arthritis. It's irritating to me that I trusted my doctors, and as a result started my treatment 6 years late. See an LLMD ASAP!
Posted by disturbedme (Member # 12346) on :
You need to find a LLMD.
Your story is pretty much as mine was (except I didn't get any abx after the tick bite). I was bit by a tick at around age 14 or younger. Didn't think anything of it at the time and had no idea ticks carried things back then, and this was only about 10 years ago.
The only symptom I had during my high school years and after the bite was tons of "excema" rashes and a headache/migraine every single day. I also remember getting dizziness and vertigo for a short period of time.
But all I had was mainly little symptoms until just a couple years ago. At that time, tons upon tons of symptoms must have come out of "hiding".
For a long time I didn't think of the tick bite I had when I was younger. Didn't even know about lyme disease really until I looked up my symptoms and lyme disease popped up.
PS - I don't have constant arthritis-like pain or joint stiffness every day, either. It comes and goes, like you said yours did.
Posted by lymielauren28 (Member # 13742) on :
You have lyme disease. Period. It can lie dormant in your body for years and then come out and bite you.
Don't ask to go see a Lyme doctor - just go see one!
Posted by hokie (Member # 14720) on :
I agree with everyone else's comments.
I'd like to add that with Lyme disease there is hope for recovery. Many people here are significantly better than they were before being treated for Lyme.
The problem with accepting the fibromyalgia diagnosis without genuinely and thoroughly investigating Lyme is that fibromyalgia has no known treatments that can genuinely give you your life back. Lyme does.
Good luck to you.
Posted by djf2005 (Member # 11449) on :
1- fire your doc and tell him to kiss your ***
2- go see a llmd
3- pray
Posted by steelbone (Member # 14014) on :
just find a real good LLMD
End of subject
Good luck...u can get better Posted by bettyg (Member # 6147) on :
welcome; i'm sending you calif. llmd names by private message.
pms can be found in my profile or left side under hello!
Posted by Jennie30 (Member # 15452) on :
Thank you so much to everyone that replied. I feel like a brick has been lifted off my chest.
My husband, children and family believed I was crazy until the cognitive and memory problems started. Thay said it all made no sence. The symptoms were to random.
Finally the syptoms have gotton so bad they can no longer dismiss them. Now we are all looking to get me back.
I have great days and realy bad days, but I feel so much better hearing someone say I am not crazy. I will go to see a llmd. I am currently taking 3 weeks of Amoxicillin 500mg the doc gave me.
I think to shut me up about Lymes. It doesn't seem to be helping. Could that effect my blood work if I go to a llmd
Thanks so much Jen
Posted by Lymetoo (Member # 743) on :
Yes, it could affect your blood work .. but your LLMD appointment may take awhile for you to get in.
So take the amoxy and make that appointment.
Read my FM story below! WElcome!! Posted by bettyg (Member # 6147) on :
i'm going to copy jennie's note to me here as she needs to hear MORE INPUT from all of you; NOT just me on this....
quoting jennie...
Thank you so much for the info. I tryied to get my doc to send me to Dr, Y, but he wants me to try some meds for Fibromyalgia first. *************************************
It is good to know Y has a waiting list.
I will take in a few other names to my doc. ********************************************
I am set to see a neurologist in mid July. *****************************************
Maybe that will help.,,,,end of quote
Thanks Again Jen ******************************
jennie,
do NOT waste your time w/your dr! you do NOT NEED YOUR DRS. APPROVAL FOR ANY OF THIS!!
do NOT show him any of the names that i provided you; some drs. do turn in OUR LLMDS to their state's health depts. and then charges are filed against our llmds. so do NOT do this ok! ********************************************
your survival depends on YOU ACTING NOW to get the correct help of the GOOD LLMDS we suggest to you that have helped many in your state.
NO, do not take more meds for fibro; you need to treat LYME AND CO-INFECTIONS if you have them.
you do have the NEURO lyme as you describe.
please send me the neurologist's name, city/state you plan to see by PRIVATE MESSAGE.
i'll check to see if they ARE on our good list or not!! if they are LYME LITERATE, ok; otherwise, we want you to save your money for a GOOD ONE.
see if you can get your local or a larger library to get an inter/intra-LIBRARY LOAN of PJ LANGHOFF'S BOOK 2, IT'S ALL IN YOUR HEAD, 80 PATIENT STORIES. read that or buy it thru amazon if you can.
it covers every imaginable type of lyme case: babies, blood recepient gets lyme due to blook; teens, adults, genital lyme, suicides, many attempted suicides, cutting, etc.
good luck; i apologize to you for posting your PM to me here public ... but you have got to ACCEPT your normal dr. is of NO HELP TO YOU.
only those we recommend to you, llmds, are to your getting into REMISSION to raise your kids and make memories with them and hubby.
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