POSITIVE LYME

[kelley333]

HI,MY NAME IS KELLEY,I LIVE IN GANSEVOOET,N.Y.. IN APRIL OF THIS YEAR(2009) I TOOK A TICK OFF OF ME. IT WAS VERY SMALL AND THERE WAS NEVER ANY REDNESS OR ITCHING, OR A RED RING. I DIDN'T THINK ANY THING OF IT AND FORGOT ABOUT IT. THEN IN MAY I STARTED HAVING ALOT OF JOINT PAIN, AND WEAKNESS IN MY ARMS AND LEGS. I SAW MANY DR'S., I HAD MANY MRI'S,CATSCANS,AND BLOODWORK DONE. THEY ONLY FOUND THAT I HAD NERVE DAMAGE IN BOTH LEGS (NO KNOWN REASON),AND MY ACE LEVEL WAS HIGH,BUT NO OTHER POSITIVE TESTS. OH, AND I DID LOSE MY REFEX IN MY RIGHT LEG FOR ABOUT A MONTH. I THEN REMEMBERED ABOUT MY TICK BITE,SO I WAS THEN TESTED FOR LYME DISEASE WITH A VERY THOROUGH BLOOD TEST,TESTING FOR EVERY KIND OF TICK BITES,INCLUDING WESTERN BLOT. THEY SAID MY TEST WAS POSITIVE AND ACTIVE FOR LYME. I WAS TREATED FOR 3 WEEKS WITH AN ORAL ANTIBIOTIC (DOXYCYCLINE),AND NO CHANGE,SO THEN I WAS TREATED WITH 3 WEEKS OF IV ANTIBIOTIC (ROCEPHIN),AND STILL NO CHANGE. I STILL HAVE THE SAME SYMPTONS, AND DR'S. ARE TELLING ME IT COULD'VE BEEN A FALSE-POSITIVE. SOME DR'S. DON'T BELIEVE THAT IT IS POSSIBLE.WHAT IS YOUR OPINOIN? WILL A SECOUND BLOOD TEST SHOW IF I AM STILL INFECTED?

[hv2laf]

if you have tests that show you MAY have Lyme. You dont want to be getting steroid shots even if they help by reducing inflammation. Lyme will get worse. I was getting anesthesia shots in my lower back and abdomen for nerve pain. They started using steroids to help lower inflammation. Around March of 2009 was the last shot I received. By the end of March I started having BAD symptoms. Loss of sensation, racing heart, high blood pressure, dizziness, tremors, waves of heat flushing through my body. Im 22 yrs old before I made it to that LLMD I didnt think I was gonna make it to my 23rd bday it was that bad...

I was diagnosed by an LLMD  But my PCM doesnt agree its Lyme. Even though my Western Blot came out positive in a few of the bands. Steroids suppress immune system. Bacareful what you decide to get done before you know whats wrong with  you. Be sure. I was on double antibiotics for 2 months and starting getting better, make sure you take vitamin B supplement and probiotics 4 hours after your antibiotics to counter its effects. It kills all the "good" bacteria that you need. Probiotics will put it back. Otherwise eventually taking heavy antibiotics and multiples will lead you to intestinal problems.

[gorbybelle]

I had cortisone injections - 3 each side - into my 'trapezium' muscles - they did help with the pain - though I had a very strange reaction to them a day after they were done - I feel now that it was mostly anxiety - if I were you I would try to avoid as many 'drugs' as poss. untill I had seen the LLMD.

Hugs - Gorbs x

[JackieCalifornia]

Cortisone is a steroid medication.  To my understanding, it is not good for Lyme patients, but I'm not an MD or medically trained.  However I would be suspicious of taking them personally.

My LLMD has never done nerve testing on me, and while I have less physical pain than some people, I still get the tingles and buzzes and arm weakness and joint pain etc that are probably Lyme related.  I don't know what nerve conduction studies contribute to the overall picture, if you know you have Lyme. I would wait till I saw my LLMD if I were in your situation.  

[kelley333]

I was just reading some old posts on lyme.One thing that caught my attention was that alot of people seem to think that "Peripherial Neuropathy" has alot to do with having lyme.Before i was diagnosed with lyme they were doing all kinds of tests on me, one being a nerve test on both of my legs because of my leg weakness.I was told i had "Peripherial Neuropathy" in both legs from my hips down,but they didn't know why.When the same Dr. did the Lyme test, he never mentioned that - that could be why i have nerve damage in both legs, isn't that a little strange? Both my arms are weak and in pain (mostly my right), should i have nerve testing done on my arms too or should i wait until i see the Llmd? Any suggestions would be very helpful, thank you. i am learning more and more about this Lyme every day through this forum , not through any of my Drs. There just not interested in my neck of the woods even though this is a high Lyme disease area. Just need a little help and advice.   Kelley

[kelley333]

thank you foe your reply, i did have two cortisone shots in sept.(one in my upper arm,and one in my knee) by a rhuematoid doctor. i think he only did it because he saw how upset i was when he told me i had bursitis and arthiosesis(or something like that),and there really wasn't anything he could do for me.He didn't seem too interested in my positive lyme test either. i'm supposed to go to him again on Thursday, but i think i'm going to cancel, the cortisone shots didn't seem to help at all. It seems like every day my symptoms are a little worse or another part of my body hurts. I go to see a Llmd in January(if i can save up $750.00) so i should probobly start gathering up all my records and tests right? Did you go to a Llmd,and how did it go? How expensive were all the tests? Thanks so much for listening.Nobody seems to understand what i'm going through.   Kelley

[wonko]

Steroids suppress the immune system and can therefore have a negative effect in infected patients.  While you would surely get short-term relief, if the steroids get into your system they could worsen any Lyme or other ongoing infection.  

I don't know if shots in the arms/legs get into the system enough for it to matter, but I would be cautious.  I know that oral or IV steroids do.  

Ask your doctor and/or resesarch about the risk of steroid shots for infected patients.  A lot of Lyme patients (self included) who were given steroids (orally, in my case) feel that in the long run it made them much worse.

[kelley333]

HI,I HAD ANOTHER QUESTION I WANTED TO ASK.HAS ANYONE HAD CORTISONE SHOTS FOR THEIR LEG OR ARM PAINS,AND DID THEY HELP?

[kelley333]

THANKS FOR YOUR COMMENT,ATLEAST I KNOW I'M GETTING CLOSER TO AN ANSWER.    KELLEY

[patsy10]

Sure sounds like lyme.  All those symptoms sound familiar to me.  It took 4 months of treatment before I saw any improvement.  I did not get IV's though.

[kelley333]

HI WONKA,I TOOK YOUR ADVICE AND MADE AN APPOINTMENT WITH AN LLMD AT THE RHINEBECK CENTER.MY APPT. ISN'T UNTIL JAN.2010.HOPEFULLY I CAN SAVE $750.00 FOR THE INITIAL VISIT BY THEN.THEY DON'T TAKE ANY INSURANCES.I'M HAVING ALOT OF PROBLEMS AT THIS POINT.MY LEFT KNEE IS ALWAYS IN PAIN,MY RIGHT ARM IS ALSO IN CONSTANT PAIN AND NUMBISH FEELING.BOTH MY LEGS FEEL REALLY WEIRD(HARD TO DESCRIBE),ALMOST LIKE A ALL OVER WEAKNESS FEELING,AND KIND OF JELLO FEELING.BOTH OF MY FEET HAVE ALSO STARTED GETTING MUSCLE CRAMPS.....WHERE MY TOES WILL GET INTO A POSITION AND STAY THERE...KIND OF LIKE A CHARLIE HORSE...SO HARD TO DESCRIBE.MY RIGHT ARM AND HAND ARE PRETTY MUCH ALWAYS PARTIALLY NUMB AND TINGLY FEELING.DOES ANY OF THIS SOUND FAMILIAR TO YOU AT ALL?   KELLEY333

[wonko]

I've never heard the weight/dosage argument before, but as a woman of size, I've wondered about it before...

I know some people, regardless of size, just can't tolerate much medication.  That has dictated my treatment.  If I can stand it, I stay on my meds, if it gets too bad, I back off and talk to my LLMD about changing my regimen.

For me, it seems varied combination therapy is working, but I went through some rough patches.

[kelley333]

HI, I AM OVERWEIGHT BUT NOT EXTREMELY FAT.I COULD STAND TO LOSE 50 TO 60 LBS.  KELLEY

[7thStranger]

Are you heavy? I was just told by a fellow Lymie friend that if your fat you need more drugs. lol. We are all big people and laughed about it here. His doc was very good and i trust his judgement. So I am curious if this could be a problem with you?

[gorbybelle]

It sounds like lyme symptoms to me - if I were you I would locate an LLMD [ lyme literate medical doc.] - main stream docs. don't always know enough about lyme - symptoms/treatment.

LLMD's. know the 'whole picture' of lyme - getting an appointment with an LLMD. is what I would do if I were in your shoes.

Lyme is treated with fairly high doses of antibiotics - which to my understanding and personal experience -  'main stream' docs. don't feel comfortable prescribing.

For some folks it can take a few months of treatment before they start to feel any improvements.

Blood tests are very unreliable - there are people here who are being treated for lyme without ever having a positive test [myself included].

It could of course be a coincidence that your symptoms started after 'tick' . I often used to think that my neck/shoulder pain etc; could be coincidence - it started about one month after a 'tick-bite' - but I have had improvement following antibiotics.

I am sure you will get more help/opinions  - there are some very knowledgeable folks here - I am not too good on the 'testing' side of things.

gorbs x

[kelley333]

NO,I DIDN'T HAVE ANY OF THESE SYMPTOMS BEFORE THE TICK BITE. I STARTED RECEIVING TREATMENT IN  JULY, ABOUT 3 MONTHS AFTER BITE.         KELLEY

[gorbybelle]

Hi -
did you ever have this type of joint pain and weakness before you found the tick?

How long from 'tick' to getting treatment?