About 6-7 weeks ago symptoms began with horrible tingling/numbness in limbs,weird chest pains - terrifying like nothing I've felt before. Within a week, tingling traveled to head & felt cheek/eye pulling (like a mild Bells Palsy?) Thougt I was having a stroke. Also weird stabbing pains, pain behind ear. No tick bite or rash. ELISA test was negative. MRIs, CAT scan, EKG, all showed nothing. Doctor & Neurologist dismissed as anxiety!!!
Symptoms continued and muscle around eye feeling weird/hurt. Saw new Doctor last week. Waiting on Western Blot result and other labs. Dr. did not think sounded like lyme.
Now, muscle/joint pains come and go in diff. places, crackling knees and neck, occasional crawling feelings under skin, stiff neck, fever for two days, more occasional pain in my chest area.
(Three people who live on/near my street just diagnosed w/ lyme last month)
Should I just insist on antibiotics? Any input would so appreciated - I am worried and feel like this has gone on too long with no one taking this seriously.
Posted by Lymetoo (Member # 743) on :
Well, it would be best if you could get some abx just to be safe. [even though you've already had this for 6-7 wks]
Don't hold your breath that this Western Blot will show something. Unless it's done by a lab used to handling Lyme tests, it will likely come up negative. You need a good lab like Igenex in CA.
PS...Go to Seeking a Doctor to find a Lyme Literate MD [LLMD] near you.
Posted by Corgilla (Member # 4066) on :
Hi Lyme(ornot),
This sure sounds a lot like the Lyme symptoms I've had. I've been infected at least twice before diagnosis. The first time, all I had was an extremely stiff neck. Then over time, I started having a bunch of other symptoms that came and went.
The second time I had the fever, chills, aches and headache. Different strains hit you in different ways and your body reacts differently depending on your immune system.
Your tests may not show anything. They test your anitbodies and it usually takes a long time for your body to build up antibodies against Lyme. After that, the bacteria start hiding so your body stops making antibodies. To test positive is like fishing on a lake. There's most likely fish in there but putting your hook it at the right time and place is difficult.
As Lymetoo says, find a Lyme Literate Medical Doctor (LLMD) if you want a true assessment of whether you have Lyme or not. Most doctors know as much about Lyme as you did before you started checking in to it.
Take care,
Corgilla
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Corgilla: Most doctors know as much about Lyme as you did before you started checking in to it.
A truer statement has never been made! Wow! Posted by lymeornot (Member # 8112) on :
Thank you both for your helpful replies.
Western Blot just came back negative (not thru Igenex).
In addition to posting on seeking a LLMD (which I just did), do you have suggestions on how else I can find one? I am around Boston, MA area.
This MD(infectious dis. spec.) said near impossible that I have lyme - will refer me to another Neurologist who may want to do spinal tap for lyme. Said rare cases this is positive while other tests were neg. This sounds scary to me and I don't know if necessary. I asked if he knew of any local LLMDs - just gave me the name of Dr. S (doc who discovered Lyme).
Maybe lyme is not my problem - but no one seems that interested in figuring out what is after ALL kinds of tests for are neg. Aaargh. (feels good to vent a bit!!!!! Arrgh.)
Posted by cbb (Member # 788) on :
Welcome to LymeNet! So sorry you're having such a tough time getting a diagnosis. Most people here understand what you're going thru.
Your symptoms sound as if they could be Lyme and/or co-infections. You need to be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.
Dr S is NOT the dr you need to see. I won't elaborate!!
I recommend you absolutely, positively wait for LLMDs' contact info here on LymeNet.
Also, on the left, click Support Groups & check with those in your state & surrounding states. They usually know the best LLMDs in the area. You need a LLMD with lots of satisfied customers!!
I highly recommend that you NOT have a spinal tap at this time. A real LLMD will know if it is needed or not. (S)he will know how it should be done, what to look for, & which lab to use.
Even if you do have Lyme, the chance of a positive spinal tap is low.
Under "Diagnosing Later Disease", he says "Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme." As I said, a LLMD will know when, & if, it is needed.
Concerning your negative tests - The Lyme Disease Foundation brochure says: "Lyme disease is a 'clinical diagnosis', based on signs/symptoms, with consideration given to other factors such as: exposure to endemic areas, history of a tick bite, response to treatment, and test results..... A test may support the diagnosis of LD, but cannot be used solely to make the diagnostic decision. No test can definitively 'rule-out' Lyme disease."
Also, the CDC says that Lyme is a "clinical diagnosis".
Have you asked your neighbors who diagnosed their Lyme disease?
Getting a diagnosis is only half of the problem. Getting adequate treatment is imperative!!
The earlier the diagnosis, the better the results, but ONLY IF treatment is adequate. In "Diag Hints..." (above), read Antibiotic Choices and Treatment Categories to be sure you receive enough antibiotics. You may want to give the link to your neighbors so they can read it, too.
Sometimes, a Family Dr has been willing to follow Dr B's "Guidelines..." If you have a dr who will listen & be willing to read the info, take him/her a copy of the "Guidelines". This would get you started on treatment much earlier.
It can take months to get an appt with an LLMD. You could ask your local dr about you having an evaluation by the LLMD and then (s)he could work with the LLMD. This would be a win-win situation. You get treated earlier & adequately and your dr learns about Lyme treatment from a Lyme specialist.
Some drs do not like this arrangement, but others recognize the opportunity.
Keep in touch & ask as many questions as you need to.
Posted by Troup Brazelton (Member # 6297) on :
I you were I, I would make an appointment with a LLMD as soon as posible and:
Write down each and every symptom. Try and recall where you were that could have exposed you to a tick. May be helpful. Continue to look for a rash somewhere on your body.
Lyme is a clinical dx and a LLMD will treat you before the testing shows Lyme.
Posted by Monica (Member # 224) on :
My opinion:
1) You have Lyme Disease and possible co-infections.
2) You need to run, not walk, to a Lyme Literate Medical Doctor who will treat you aggressively.
3) You need to stay away from infectious disease doctors and neurologists.
4) Natural remedies are nice, but hard core antibiotics are what kill these spirochetes
Posted by lymeornot (Member # 8112) on :
WB results came back (Quest). Band#23 is positive, all others are neg. Does anyone know -is this band significant? What does that mean?
Lab and Inf. Dis. Doc say I do not have lyme (he wants me to consult w/ neuro as next step). The ID doc did agree to write Rx for Doxy 100mg, 2xday, 30 days. I start tonight. Next week I have an appt. with a LLMD.
BTW - This board has been such a tremendous resource for me. Thank you to each of you who take the time to share your knowledge and really support others. You make a difference!
Posted by groovy2 (Member # 6304) on :
Hi lymeornot
Tests are perty much useless Many variables can sque results-
Do not use test results to rule out disease-- only to conferm-
The symptoms you state are all symptoms of Lyme-Jay--
Posted by PinchotGail (Member # 5066) on :
Lymeornot,
I found this bookmark that was posted by Cave.....explaining the western blot. Bands 23-25 are outer surface proteins (OSP C)
tHE ACCEPTED MINIMUM DOSE OF DOXY FOR LYME is 300 to 600mg per day....not 200mg.
I am not a Doctor..the others posting here have said it all.
Now.focus..Lyme Literate Doctor or life time of debilitating disease.
You choice.
Trout
FFFFFFFFFFFFFOOOOOOOOOOOOCCCCUS. Posted by welcome (Member # 7953) on :
I don't mean to make lite of your experience with Dr. Dumass.....but......hahahahahahahahahah-hic -hahahahaha-snort-hehehahaha! Anxiety? Riiiiiiiiight.
My first Dr. Dumass visit, I was told, "There's only one thing that causes all those symptoms, and that's stress."
How can Dr. Dumass say, after taking into acount all your symptoms, that it's "highly unlikely" you have lyme? Ask him what Lyme symptoms are? You're sure to be less then impressed with his illiterate answer.
A good suggestion was made above. Correspond with your neighbors. See who by and how they were diagnosed. Try and get some documentation from them to support the argument that you have an increased "liklihood" that you have been exposed to a tick borne pathogen(s).
It sounds to me like you have a co-infection. Igenex can test for these as well.
Rest assured that when this epidemic finally comes out into the light of day, the so called health care industry is going to shudder from the pain.
Posted by Corgilla (Member # 4066) on :
Hi,
I guess I'm a little slow. I read welcome's post and started thinking "How does this person know that lymeornot saw Dr. 'Doomahss'?" Like the French pronounciation. Took me a while to figure out the "Dum" part. Teehee.
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