posted
For five months I have been to a myriad of doctors, 14 to be exact. I live in Rhode Island (Tick City) where I regularly remove ticks from my animals. A year ago I was gardening and felt something crawl into my ear. It annoyed me for three days or so then went away. Shortly thereafter I went to the doctor for the first time in years for rib pain and flu symptoms which were dismissed after a CAT scan. Everything was put on hold when I found out I was pregnant. five months ago I began having numbness in my face, crippling shooting headaches, visual "weirdness" for lack of a better word, ringing in my ears, neck pain, crackling in my neck when I move it, followed by consistent muscle twitches and an electrical sensation throughout the muscles in my body. Then came the hip pain and back pain and again flu like symptoms.
All of the big scary monster diseases (MS, ALS, NF, etc.) were ruled out. Finally a doctor ran a spinal for Lyme which came back negative. Today he patted my hand and prescribed anti-depressants. Can I just say that is the one symptom I don't have. On the diagnostic criteria I have 18 out of the 43 symptoms of Lyme, and my understanding is over 7 is the red flag. There was no discussion of other possible co-infections etc, and no explanation for the physical symptoms, other than I guess I'm crazy. If I'm a hypochondriac I'm a darn poor one --- I haven't been to a doctor for six years until this started.
Does anyone out there know anything about spinal taps and their rate of success catching Lyme in your system. I feel as though I am screaming for help in the medical community and nobody can hear me.
-------------------- tammy Posts: 3 | From rhode island | Registered: Nov 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Tam...
Good to see you. Or hear you screaming! I'm listening... as are others here.
And before we say anything else....
NO, you're NOT crazy... or "just depressed" as they would have you believe.
Actually you'd think that after these doctors got done the expensive fishing expedition looking for ABLS (Anything But Lyme Syndrome) and come up empty handed... that they would come up with something more original than prescribing a bucket full of anti-depressants and giving you a pat on the head.
Jerks!
The rate for spinal taps being able to prove Lyme is there or active is about zilch. I would post the Hopkins study that shows the figures... which are PITIFUL at best.. but don't have it on this computer.
But it is less than 10 percent most of the time.
So I would not rule out Lyme or be belittled or insulted by stupid doctors who couldn't detect Lyme if a tick bit them on the butt.
Others will be along to share.. so I'll quit here knowing at least I have said you aren't crazy... or at least not TOTALLY crazy!
posted
As above, get to an LLMD - ASAP! All of your exclusionary will not be in vain, as the LLMDs will be able to use your test results to help arrive at a differential diagnosis. They will feel better about treating you for Lyme if other types of Lyme tests don't immediately show positive.
Very Good Luck - your are no way crazy - don't give up - you can beat this.
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Wow! I agree. Make an appointment with an LLMD immediately and tell them about your situation and pregnancy. If getting to an LLMD takes time, find a regular doc right away to put you on an antibiotic that is safe to take during pregnancy. Get a doc to sign for a blood test at Igenex right away.
I am so sorry your doctor was such an idiot and in RI after all the tick exposure you had his lack of knowledge is criminal! You will likely find docs who are better informed in your area.
Please get in with an LLMD right away and get on pregnancy safe antibiotics right away until you find out from a reputable lab whether lyme is the issue. Based on your symptoms it sounds very likely.
posted
I also live in Tick Central (RI) and tested negative for YEARS.
Finally got a positive test last September, but now I'm in rough shape because of being infected so long! Had to see a LLMD out of state to do so.
Don't wait!! PM me if you need doctor info.
Posts: 78 | From Rhode Island | Registered: Jul 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
tam, this is really another sad story about another duck (dr)who just doesn't get it. Rhode Island duck at that.
No, you are not crazy. This very well could be symptoms caused by a vector borne illness. You have found the right site to get some names of some very good lyme literate doctors in the New England area.
Find the little search button on the top of this page. Put in spinal tap. It will bring up story after story like yours.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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