Here are the symptoms I have been experiencing: Muscle twitching Facial Numbness Shooting Pains from the hips down popping joints ringing in my ears veritgo panic attacks tingling in my arms, hands, and feet jaw pain neck and shoulder pain indigestion alternating bouts of constipation and diarrhea chest pain
All my blood work is normal - had thyroid tests, MRIs, xrays, coagulation blood work,DVT ultrasounds, EKG, etc.
They tested for lyme (at the massachusetts state lab) and reported that the ELISA and Western Blot were both negative.
I can't seem to get any doc to see that I may have lyme b/c of the negative test results. They keep saying - you have some type of polyarthritic condition like fibromyalia!
Does it sound like lyme? I remember a very strange rash - a big welt and a rash that spread out from it, I thought it may have poison ivy or a spider bite, in the summer of 2007. Sought treatment but was dismissed that it wasn't a bull's eye. Now here I am almost 2 years later with these weird symptoms.
Any advice? How can I get a doc to treat me without a positive test result. I am not financially in a position to pay for a doc out of pocket and my insurance company (HMO) will not allow me to go out of network. I live in Massachusetts. Any suggestions?
JT
Posts: 72 | From Massachusetts | Registered: Feb 2009
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posted
I am going through the same thing and the best thing i can recommend is biting the bullet and getting the test from Igenex i am waiting for my kit now.
I have had so many test come back clean its crazy! I have been so sick. but they dont seem to care much. the first question they ask me is do you worry about it to much!
What do you think it has robbed my life and you stupid docs wont help!!!!
I have been going crazy with the docs and they wont help or treat me and i do have the money for the llmds..
they want to much for a visit.. so i can understand.
so my suggestion is order the test kit asap! and do the work yourself.
Hopefully you will get the answer you are looking for because i know what its like not getting the answer.
maybe then they will treat you ...
they told me if mine comes back ++ they are going to start me on IV because i have neurological problems now.
Well if they didn't wait so long i wouldn't be in this boat..
good luck to you.... this site is very helpful and people will give you lots of answers that you are looking for..
Posts: 47 | From maryland | Registered: Jan 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Been through the same type of experiences as you with the symptoms and negative test results.
I've been diagnosed with anxiety disorder and depression, and told thst I just need some antidepressants and a life.
Yeah sure.
I'm seeing a LLMD this week, and like you I don't know how we'll pay for it.
My husband lost his job 2 months ago, and we currently have no insurance. I'm not wroking either, and we have 2 kids.
Yeah, it's a rough road, unfortunately, but this is a great site for info and support.
Good luck, and I hope you find what you need here.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
It is somewhat comforting to know that I am not the only one going through this...even though I sometimes feel all alone.
If I order the kit from Igenex...where can I have my blood drawn? Will my doc draw the blood and I can just send it myself? I have another appt w/ her tomorrow but I am sure she will just look at me and tell me I am crazy.
They have put me on Prozac and Ativan. It has helped with the panic attacks but I am not depressed. I want my life back, my job, my family, my friends, etc.
My 6 year old keeps asking why the doctor can't make me better.
So frustrating...anyway, has anyone recieved good treatment from an LLMD that accepts insurance. There are a few in Massachusetts that accept BCBS. Wondering if I do get a positive IGENEX test, will they treat me?
Thanks for all the help. God bless! JT
The chest pain I have has not gone away for over a week. It's always there
Posts: 72 | From Massachusetts | Registered: Feb 2009
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I heard that this doctor is dedicated to helping find out what is wrong with patients. Even when it is not cost effective...
Next option, try Igenex.
Another option is to see if you can get doxy for a month.....I heard that lyme shows up after a round of antiboitics. I also heard that you should get tested on Monday or Tuesday. Plus, test on a full moon. I know that seems crazy, but I heard it from someone I trust, that is the only way I believe it.
Last, maybe you have the co-infections and not lyme???
Babesia Bart RMSF STARI
OR, YOU COULD HAVE a strain that the tests doen't test for...........
Something to think about.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Call your local hospital lab and tell them you will be having blood drawn by them and it needs to be fedex'd to CA....Igenex sends you a free fed ex package/label with your test kit.
The lab needs to process(spin)the blood first before they can fedex it to Igenex. Most hospitals are used to fedexing blood to other labs for certain tests.
An Igenex western blot IgG and IgM costs $200. It must be prepayed and a credit card can be used if you want. You can turn it in to your insurance co after they send you your receipt to see if they will reimburse anything.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Problem with this is you need a Rx for a Western Blot from Igenex.
Plus your results will go to the doctor who ordered the test.
I would suggest that you call Igenex and ask for the Lyme test kit.
Get your local doc to write the Rx and draw the blood.
You send it off.
Hint: If your doc writes his fax number on the
Rx then the results will be back in 2 weeks.
If not, then about 3 weeks.
Lyme disease is a clinical diagnosis.
Blood work only can support this diagnosis.
You can test negative and still have Lyme.
I also suggest you post in Seeking a Doctor
With your city and state for help in locating
A doctor who is Lyme Literate.
Try to do the blood draw on a Mon or Tues.
That way as your blood has to travel to Ca.
It won't be sitting somewhere over the weekend.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
You need to start a paper trail. Get copies of all your lab tests and doctor's notes for your own personal health file.
The doctor may have lied to you. It happens frequently.
If they ran a Western blot, then you must have ahd a positive ELISA test. Standard labs don't run a Western blot test unless you get a positive ELISA test. Get a copy of your test results!
Get an LLMD asap. Post your general location/state in the "Seeking a Doctor" board.
Not all Lyme rashes are bulls-eye in shape.
You can read about the different types of rashes in Dr. Burrascano's Lyme treatment guidelines. A link is in the Newbie Help Links, which is posted at the top of page one of "Medical Questions."
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Can you get a copy of those neg tests? LLMD may decide that they are positive.
MDLabs takes insurance!!!!!
-------------------- Suffering too many years to count. Can't remember anyway!!!! Posts: 46 | From It's News to Jersey | Registered: Mar 2008
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