and has tested me for West Nile Virus, Rheumatoid arthritis, and some other insect born illness that starts with an e. Cannot remember what it was for the life of me lol. I am shaking all over 24 hours a day for about 5-6 days of the week, my wrists and hands feel as if the bones are made from molten steel and I feel as if my bones are heavy as steel too. I cannot sleep most days and I forget the simplest things. I have even given my atm card to my wife as I buy things and completely forget about it. Not good when you try to balance the checkbook lol...Yet I take it all a day at a time. Not much else I can do.
Thank you all for your support. I still come here to learn new things no matter what the diagnosis turns out to be.
Posted by momindeep (Member # 7618) on :
You are right, just one day at a time...just because you don't have an answer yet, doesn't mean that you won't ever have one.
I am of the mind that things will be forthcoming and that your research and questionings will lead you to either a dx or a plan to help you feel better...it is so hard not knowing what you are dealing with.
I will keep you in my prayers, and I mean that.
Posted by Lymetoo (Member # 743) on :
If you need more names of LLMD's please post in Seeking.
Sounds like you need a real doctor.
Posted by t9im (Member # 25489) on :
Hi Jon:
Was your western blot negative and did they give you the band readings?
If so were any of the bands positive?
Posted by just don (Member # 1129) on :
'maybe' just maybe,,,you have the wrong doc.
Is he a LLMD,,,or a street run md????
Keep doc shopping till you get a reasonable answer.
Not the "We dont have that here" crap ''''
Posted by bridge (Member # 30896) on :
I'm in the same position Jon unfortunately.
Interestingly enough, my dr too had me get a west nile virus blood test...
The one dr who said it 'could' be lyme disease has left the practice so now I'm back at square one...
Posted by TF (Member # 14183) on :
Was it epstein-barr virus, or
eastern equine encephalitis?
Posted by map1131 (Member # 2022) on :
Gee, where have I heard that statement before?
They must all go to the medical school? They teach them to say "I don't believe you have lyme".
Or "It is not lyme's disease. This test shows you are only a little positive."
Or they pull some dx out of you know where and call it something real simple like MS, ALS, chronic fatigue, fibro, Parkinson like, bad flu virus, EBV, on and on.
I love the "I've already rx more than enough abx, if it was lyme it would be dead by now. It's been 10 days. Let's do another round of tests. That sed rate is elevated and that can't be accurate."
Pam
Posted by Twisted Jon (Member # 31236) on :
Lymetoo I just cannot afford a reg. LLMD, the out of pocket is just too much. t9im, again, cannot afford a LLMD so..... TF, not sure to be honest. I am checking with my doc for results now...
Thank you all very much for the support and feedback. I just take things a day at a time and hope for the best.
Posted by Lymetoo (Member # 743) on :
Have you called everyone on the list to see??
Self-treat!
Posted by t9im (Member # 25489) on :
Hi Jon:
They should be able to run the western blot and give you the band readings. The greatest downside is bands 31 & 34 won't be on the test if its not a speciality lab like Igenex.
You need to know the bands just to see if there is any exposure.
My daughter failed the Elisa lyme test twice so the pediatrician and IDSA MD stated it couldn't be lyme.
We saw a pediatric neurologist who did run the WB but didn't obtain the band readings. It too came back negative so she indicated it couldn't be lyme.
We finally saw Dr. J and had the WB run by Igenex. Initially she only had 2 positive bands with to equivocal bands so still negative but Dr. J inferred the bands indicated exposure to lyme.
This was good enough for us (8 months, 10 MD's, 2 hosipitsl, numerous tests, etc.) to believe it was Lyme versus the pediatric IDSA MD stating "I know Lyme and your daughter doesn't have Lyme disease".
She has subsequently been tested 3 more times and has only had 3 positives with equivocals. Good enough for us to know we are on the right path.
Posted by HopesAlive (Member # 29774) on :
I believe I am one of the fortunate few, when it comes to doctors. I could not afford an "LLMD" at this time, but I am seeing the integrative physician who diagnosed (positive Igenex test) me with Lyme Disease.
Because she does not call herself an LLMD, I do not have to pay out of pocket. Just my regular co-pays as I would any other doctor. Yet, she is extremely educated when it comes to Lyme and company, even if she is not the expert others may be able to afford.
Because she is not a regular family doctor, she is open to so much of what a regular LLMD would be open to, is informed and knows the importance of diet and has knowledge about supplements, alternative medicine, etc. I know there are other integrative physicians on the list for Minnesota LLMDs, so maybe you could look up someone like that, who may be better than the run-of-the-mill, Lyme Disease-does-not-do-that doctors.
Just a thought.
Posted by katiebobatie (Member # 28753) on :
please don't give up!
i was told i have chronic fatigue, fibromyalgia, ricketts, maybe lupus, depression, and rheumatoid arthritis.
i think i'd be dead by now if i wouldn't have found an LLMD.
i hope somehow you find a way to come up with the money to see a doctor who can help i know it can be rough!!
Posted by Twisted Jon (Member # 31236) on :
My new Neurologist is keeping an open mind about what is the root cause of all the issues I am having. There are a few more tests he wish to get out of the way and there is the rheumatologist yet to see. However, he said if all these tests come up normal and the rheumatologist finds nothing then he will order a lumbar puncture or whatever (basic spinal tap I guess?) to test for lyme in the spinal fluid I guess. Basically he is going with the eliminate everything else then what is left must be the answer. Mayhaps there is light at the end of the tunnel that is not a train lol....
Posted by apljack (Member # 14233) on :
You were probably tested for ehrlichia (or ehrlichiosiis). I can't think of another tick borne illness that starts with an e.
While maybe you don't have lyme (or test positive) it is possible that you could have a different sort of infection. Seems prudent to test for babeosis, bartonella and mycoplasma. Perhaps strep titers too.
While my daughter's neurologist does not believe in lyme, she is treating her for a different form of tick bite infection.
Posted by Pinelady (Member # 18524) on :
You have something causeing the symptoms.
Many organisms they are now finding are giving up their DNA to fold into ours...
They are aware of this and makes the tests not see it unless enough is killed if they are not in the sample they won't be seen.
Some of the others shown to give up their DNA now is Strep, Staph, Gonorrhea. Shown on recent studies...Can't wait for more.
So what a LLMD does is treat for the bacteria that can cause it, and parasites that can carry the bacteria and parasites, and most find the virus' have a hard time living in that environment and only treat if they must...
So I hope you can find yourself a LLMD. Or at least challenge for the Igenex WB if NEG....That is how I found it...
There is no such thing as a syndrome without a cause....
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
i know it can be rough!!