LEG PROBLEMS

I live in NY  , tons of cases of lymes ,  My wife had it last year.  Last week I started having pain all around the knees , both knees , (lasted a week.it felt more like tendon issues but the knee was sensitive to the touch. After going for blood tests-(lymes and arthritus) which I still do not have back yet, My syptoms (symptoms) have changed . Over the  last  couple of days  a sense of fatique in the hamstring and claf muscles in both legs has come on and the knee pain has disapeared ,The muscles almost feel as if they are about to cramp but don't.  I went back  to the  doctor . He seemed puzzled.  Said it  didn't sound like Lymes ,but lets wait for the tests.  I asked about ALS and MS  ,He sais that it is usually associated with weakness and atrophy of the muscle. I'm goingto a nueroligist on sat.   What should I ask for???   I'm worried that if the test comes back negative. Maybe it is just isn't showing up.   Any Help???

[jaksmom03]

It does sound like lyme! please listen to me when I tell you this even if the test come back neg dont take that as true! you need to have a lyme panel done through igenex labs in CA they have a website just google igenex. I had 7 tests come back negative but knew this was what was wrong. I have pain in my thighs and knees and then its gone, not like a pulled muscle that has to heal. Lyme is very tricky I never remember being bit or having a rash which is the norm most people dont remember. The test is about $400 but worth every penny!!!! anyone with lyme will tell you igenex.  Also very important and do this now even without a test. I have a positive test and I have never taken an antibiotic you will learn about lyme that it is not a simple illness there are co-infections that come along with it and I see people on abx for years still suffering and sick. I developed IST which is a heart condition and didnt know for months after this it was caused by the lyme. I was debilitated by palpitations I started reading about food and perservitives even before I knew it was lyme and started eating 100% organic and i was a big mcdonalds junk food eater! I now after eating this way for 5 months instead of having bad weeks I have moments or maybe a day but nothing like what I had. Once you have lyme you will always have it what you want is remission and abx are not the answer all the time if you arent very bad off then pumping your body with abx isnt the answer the #1 with lyme is excercise, then diet (its a tie with these I think) detoxing, rest and supplements!  Doc just want to put in an iv and pump you full of abx for years this is not the answer you have to get your body as healthy as you can to learn to manage lyme with lifestyle. I am now in school full time for 2 different subjects I am off the beta blocker and able to play with my kids and headed back toward healthy then in a sick bed like I was at 26. But please even if you dont agree with this atleast get another opinon from an intergrated MD that knows more then eastern medicine. You will learn that Lyme is very political, and docs dont want to treat and if they do they dont treat you long enough because of insurance issues and then there are LLMD who are lyme litterate docs and they dont take insurance and are very ahrd to get in with! But educate yourself go to youtube and watch videos Im on a chat room through lymenet which is awesome! but just know as much as you can about meds and treatments and side effects and what not it will save you in thelong run! Good Luck!

[dano1959]

Thanks for the info,  Igot my test results back from the local doctor today,  Negative for lymes .   maybe I should call the guys at igenex next.  I have a n appt. with a nueroligist tomorrow to hopefully rule out anything like ALS or MS.  Back lower back scatic nerve flared up on thurs just to confuse the situation more.  Now I'm not sure if the pain down the leg is  as simple as scatic or a complication of the possible Lymes.
pretty confused.

dan

[Deborah42]

I really hope you are doing better and that some relief of your symptoms have occured through appropriate treatment.

I agree with jaksmom03---the west, particularly California was the first to become expert in Lyme here in the U.S. My current experience with the east is undetermined with my new set of neuro symptoms.

Whether or not your diagnoses is specifically 'Lyme Disease', it sure makes me wonder if Lyme Disease ever truly leaves one's system, or if having had Lyme helps set the stage for other neurological disorders in the future.

[babsesl]

I was diagnosed with Lyme eleven years ago.  Those muscle pains that feel like cramping, my husband and I both had (have) them.  Lyme is a confusing disease.  Different problems come and go.  The doctors should not be confused by this if they know enough about lyme.  But, most of them don't.  There is a doctor on Long Island who is very well known for diagnosing and treating lyme.  Let me know if you're interested.  I will try to find his name for you.  Also, lyme disease tests are notorious for coming back negative when they shouldn't, about 30% of the time.  And yes, I went to a whole group of different doctors, each one trying to diagnose a different problem because the first five doctors that I went to couldn't figure out what was wrong with me.  I don't know if you have lyme of course, but your story isn't foreign to those of us who weren't lucky enough to be diagnosed on time.

[JOEY54]

HI,
Would you have the name  of the dr. in Long Island that diagnoses and treats Lyme?
We live in Canada and my son testing was neg here so I was sending his blood to IGenex
Thanks
Joey54

[patsy10]

I agree with everything jaksmom said.  I was an avid hiker.  In 1992 I noticed 3 bullseye rashes on my chest and didn't think a thing of it.   First symptom was floaters and eye pain.  This progressed to one thing after another...joint pain, muscle pain and more.  About 8 months after the rash I developed a full-blown neurologic problem with numbness, leg dragging, ear ringing, weakness, pins and needles and much more. All neuro tests came back normal. Long story short, I finally saw a lyme doc about 15 mos after the rash.  I took antibiotics and started improving.  It took 5 years to recover to nearly normal.  All my symptoms returned in 2005.  I have again improved on antibiotics.  I am also a believer that lyme never leaves your body.  It just goes into remission only to come out again during periods of stress.  I have never tested positive.  Also wanted to add that ALS does not have sensory symptoms like numbness and tingling, just weakness and wasting.

[Dave0272]

Hello,

I currently am having symptoms in my legs which you have described.  I get widespread muscle aches sometimes sharp "tearing" sensations.  

In my legs, if I am standing or walking for some time (1hr+).  I get pain in my quadraceps just above the knees and my hamstrings also feel like they are cramping up and beginning to pull.  My muscles also seem to have become intolerant to exercise as of late.

I have tested three times for Lyme's and once for Erlichiosis since October 2007,  

Lyme's "western" blot all came back indeterminate (not having enough IGG and IGM protein bands).  Antibodies for Erlichiosis was negative.

Currently I am two weeks into oral Doxycycline (100mg) 2x per day and do not see any improvements in the symptoms if it is Lyme's.

Is it fairly common to experience "muscle strains" with Lyme's.

Dave

[patsy10]

If it is lyme it may take months to see improvement.  It took four months before I saw any improvement.  Also,  the amount of doxy you are on would probably not cure lyme that is chronic.  You may want to do some research, post a question at lymenet dot org.

[Dave0272]

ANYONE HAVE ANY RECOMMENDATIONS ON HOW TO TREAT THESE SYMPTOMS?

DAVE

[Alidora]

Hi Dave,

Patsy is right: Chronic Lyme takes time to treat (many months, maybe a year, sometimes two...) and 200 mg doxy/day is not enough.

You should post your questions on LymeNet. Tons of Lyme sufferers over there with lots of experience. They will be able to answer all of your questions and help you find a Lyme-Literate MD.

I have Lyme disease and experience severe muscle pain in my legs. I've been taking antibiotics for a few months now and many symptoms have subsided, but the leg pain is still there. I know it will go away with time...

Take care,
Dora

[Dave0272]

Hello Dora

Thank you for your response.  My issue seems to be muscle strains in my legs particularly hamstrings.  I am 36 year old hobbling around like an 80 year old man.  I walk gingerly as to not hurt myself.  It seems my ligaments are tight as well.

Can you describe to me your leg symtoms (symptoms)?  Do you have trouble walking a normal pace?  This is frustrating me.

Dave

[Alidora]

Hi Dave,

I have lots of leg symptoms! Most of the time, my thighs hurt just like when you train at the gym for way too long (lactic acid). I also have knee pain—without swelling—, bone pain in my tibias, etc… Most days I walk normally, but sometimes I walk like a robot!

Last week, for about 3 days, I experienced a brand new symptom: my semitendinous muscles (or hamstrings) were cramping. I massaged them with Rub-A535 for a long time but the pain/cramp did not go away. I wasn’t even exercising or walking when it started!

Then one morning I woke up and the problem was gone! It may have been caused by a magnesium deficiency. I had stopped taking my supplements for a few days to see how I’d feel… Maybe that’s what triggered it. People who have Lyme disease usually have a magnesium deficiency, which causes a host of symptoms (heart skip, muscle twitching, spasms…)

You wrote that your western blot came back indeterminate. Did you have ANY “+” or “IND” bands? My WB was “negative”, but the few bands that reacted were specific to the Borrelia burgdorferi bacteria—18, 31, 39, 83-93. I already had a clinical diagnosis based on my symptoms and history, but those bands are an additional proof that I have Lyme.

I hope you feel better soon,

Dora