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lyme disease
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lyme disease

I have spent the past two years with neurological symptoms and was finally diagnosed with lyme disease.  I am wondering what your opinions are on all the contraversy that surrounds getting a lyme dx.  What course on treatment would you put a patient on if you suspected cronic (chronic) lyme disease?

Thanks so much for your time.

Lesley
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Avatar_n_tn
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.  
     The diagnosis of 'Chronic Lyme disease' is quite controversial.  Lyme disease is caused by the spirochete bacterium Borrelia burgdorferi and is transmitted to humans through deer ticks.  Primary infection (recent/acute infection) is characterized by fever, flu-like symptoms, rash (bulls eye rash that expands overtime) and muscle aches.  Not everyone experiences the primary infection symptoms.  With secondary lyme disease, the bacteria has evaded the immune system and causes an number of different potential problems including cardiac problems, migratory arthritis and neurologic symptoms (including numbness/tingling, problems thinking/psychiatric manifestations, etc).  Many patients have the neurological symptoms that are common in 'chronic lyme' and they are worked up for multiple sclerosis, cervical disc disease, depression, schizophrenia, etc, because these diseases present in a similar fashion.  However, many paitents with these type symptoms (very vague an non-specific, which makes diagnosis difficult) have extensive testing and never get a formal diagnosis, and the possibility of lyme disease is often attractive to these people as an alternative.   The bacterium Borrelia burgdorferi of lyme disease does evade the immune system and that makes diagnosis itself very difficult. The first test is an ELISA test for lyme antibodies (IgG and IgM) which can be negative even with the disease present.  Next is a western blot for lyme protiens, which is more specific, but is not widely used.  PCR tests are also available, but these can also be falsly negative because the bacterium does not reproduce often enough to be amplified.  Thus many patients get a 'clinical' diagnosis of lyme disease because the test are unreliable and the symptoms are very disturbing.  I would encourage you, if not done already, to have an extensive diagnositic search including going to an academic medical center to look for other causes of your symptoms unless you had an acutal positive test.  Some things that can help in diagnosing neuro lyme disease include a lumbar puncture to evaluate the spinal fluid for signs of inflammation and Borrelia burgdorferi protiens/DNA, MRI of the brain (often shows multiple periventricular non-specific white matter changes-that can also be seem in multiple sclerosis, hypertension and migraine headaches), a cerebral angiogram that may show changes consistent with vasculitis and a SPECT scan of the brain.  The SPECT scan is probably the most usefull and can demonstrate areas of low blood flow in the areas that are generating symptoms.  Treatment for chronic lyme is also controversial, the standard practice is to give doxycycline for 3-6 weeks and then evaluate for improvement.  Some people have been tried on high dose ceftriaxone IV if they did not respond to the initial treatment.  Unfortuanately, some people do not repsond to the antibiotics and it is never clear if they have refractory lyme or if they really never had lyme in the first place (common since the neurological symptoms of lyme are also seen in many other disorders).
I hope this has been helpful.
14 Comments
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Avatar_n_tn
Would you mind listing your symptoms?
Thanks, Mel
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Avatar_n_tn
Not too hard to believe; after being diagnosed with advanced Lyme Disease, when I complained about short term memory problems, word finding difficulty, sensitivity to light and sound, difficulty multi-tasking and prioritizing, and problems concentrating, I was told it was just because I was distracted by the pain from my arthritis and peripheral neuropathy. I asked to see a doctor, but was initially sent to a psychologist instead. Interestingly enough, his wife has had MS for years, so he considered my problems minor, since I could still walk and my IQ still tested at 130. Of course, the fact that it had been 160 before the Lyme and that I couldn't run my business anymore didn't impress him. After persevering, I finally was referred to a brain injury specialist (a neuropsychiatrist, i.e. a real MD) who later referred me to an endocrologist as well. Bottom line is that you have to be your own advocate, even with really good doctors, and make sure they take your symptoms seriously.

Good luck.
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Avatar_f_tn
Did you get a positive blood test for lyme?
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Avatar_n_tn
No - which was the 'sticking point' for the rheumatologists I saw. They knew so little about Lyme, I had to educate myself. Even when I showed them articles from medical journals, like the one which said "sero-negative patients very often were treated with sub-clinical doses of antibiotics"... "correlates with some of the more severe neurological effects".

In my case, I went to a doc in the box a week after discovering a tick which had been on the back of my knee for a week prior to that, and was given 10 days of oral antibiotics. I had already been through the flu symptoms, joint soreness, and fatigue before I saw him, and the bulls-eye rash was almost gone as well. Not knowing that I should have had 30 days of AB, I pretty much forgot about the whole deal, even when I went back to the same clinic 6 months later with arthritis in my left shoulder so bad I was checked for cardiac problems first. That doctor never looked at my records or the notes from my last visit, so when my hands, wrists, and ankles became swollen 6 months after the second visit, I still never thought about Lyme. That's when I went to an orthopedist, thinking it was something like carpal tunnel or tennis elbow. He was alarmed by the heat from the inflammation, and the fact that couldn't discern the temperature difference with my own hands. He referred me to a rheumatologist, who simply believed that Lyme disease could not be 'caught' in Virginia. A second rheumatologist dismissed Lyme when only one of the supposedly indicitave bands was present on the blood test and because he said Lyme always presented first in the knees! Both of them spent less than 30 minutes for a history and exam, and assured me that it wasn't Lyme.

Fortunately, my lawyer suggested I see an infectious disease specialisty, who had treated the wife of another doctor who was a friend of my attorney, after one of the same rheumatologists told her she didn't have Lyme and took her off antibiotics, after which she became progressively worse. The ID doctor took the history himself, which took almost an hour and a half as he inquired about sports injuries, previous travels, job environments, diet, and family background, then spent well over an hour doing a complete physical exam and lab workup.

Even though the CNS symptoms had only started presenting by then, at least to my awareness, he picked up on my loss of tactile sensation, preception, and parasthesia, and insisted I start on IV antibiotics immediately. Fortunately my wife is an RN, so I could do that at home, but I feel for anyone who's not that lucky. The discussions with my other doctors about cognitive problems occurred after I'd finished the IV antibiotics, when I was feeling much better physically, but the pattern was similar.

It's probably understandable why I am less than impressed by physicians in gereral, and why every doctor has to prove their value and expertise to me, since I now know you can't assume anything about their proficiency just because they have a license.
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Avatar_f_tn
Thanks for taking the time to tell your story.  I feel the same as you about the doctors.  I've been to numerous.  I don't trust any of them and feel I have to do all my own research.  I too am an RN.  A couple of them were concerned about lyme but when the tests came back negative, the bus stopped there.  I live in Ohio and it is generally believed here that lyme is not present.  I had  3 bullseye rashes back in the early 90's, got very sick with infectious and neurologic symptoms.  It's a long story but I had a few good years and it all hit again a couple years ago.  My symptoms are mostly neurologic and muscular....numbness, tingling, twitching, burning, visual etc....  I also have severe pain all over.  MS has been ruled out several times.  Unfortunately, without a positive test, no one will treat here.  I have to travel out of state.  Best wishes for a full recovery.
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Avatar_n_tn
My symptoms are similar to Patsy10's.

numbness and tingling that roams all over the place
memro problems
confusion
muscle twiching that is all over all the time
muscle jerking
heavy legs
exhaution
depression
buzzing and vibrating in my muscles

My story started back in august 03 when I came down with swollen glands and terrible fatigue.  After six weeks it went away...then in Dec 04 it came back with all the neurological symptoms and never left.

I spent two years trying to find a docotr that believed me and could help me.  I now go to a docotr in Maine whos wife had lyme disease and is now fully recovered.

I am on two anti-biotics and will be for at least a year.

I have already seen much improvement in my neuro symptoms and hope to just keep improving.

If anyone wants any more information on Lyme disease they can email me at ***@****.

Good luck to all.

Lesley
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Avatar_n_tn
Leslie,

I am from Los Angeles, Ca, is it common to get Lyme in my area?  Neurologist says NO it's not, but I have all the symptoms?
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Lat, hello, it's been a while and i've been thru the ringer .. I thinks it's been since Nov or Dec since we've communicated and i've been thru a million test and NOTHING!  I'm sick of this and are widdling away here.

I am now, going to demand my doctor tomorrow send my blood to IGENEx for specalized lyme testing.  I've only had one test for it and it was neg.  

My symptoms are now, progressive muscle twitches.  Chills at least 20 times per day.  I'm in horrible pain, cramps all the time, feet are shrinking.  My reflexes are so brisk, they rated them a 5/5....  My muscles are shrinking...i guess atrophy or it's just weight loss?  Thats my big question, does lyme cause atrophy or your muscles to shrink?

I've got tongue atrophy and all sorts of crazy stuff going on.

I've been seeing an ALS specalist in Houston Methodist, which is the best and top ALS clinic in the south and the ALS specalist has adamately told me, this is not ALS, but she doesn't know what it is.  She even told my mom, she is sure this is not even the beginning of ALS??????  Great, but what is causing all of this...

I don't have any "real" weakness, which is what the ALS specaist is so stuck on.  Also, I've now had 3 EMG's, first normal, second normal and the third was abnormal, but, there were no Fib's and PSW's, meaning no ALS evindence, but there were other things, such as F-Wave afterdischarges and the EMG neuro told me i had very very irritated muscles...there was continuous vibrating, they were not quiet and they suggested possible Isaac's syndrom (syndrome) (since been ruled out)????

So, what do you all think about this.  I'm almost convinced, it's late late lyme or it's ALS....What else could it be, either way, i'm running out of time... i'm not scared no more, i'm irritated and want to know whats happening with me...

I need to fix this, or i will be in trouble soon.

Thanks,

Jamie
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Avatar_n_tn
Wow...sorry to hear all this.

Honestly you sound classic lyme>  Email me and I can email you some other sites and possibly get you on track to see a Lyme doctor.

***@****

alll the symptoms you describbed i have had....i now after 3 months of treatment only have some of these...

Lesley
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Avatar_n_tn
Hi Marline,

Email me and I will send you some info...there is lyme disease in California.  there is a guy who has a website of his story who lives there and can probably help you a lot.  there is also one of the only labs good enough to test for lyme in California.

***@****

lesley
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Avatar_n_tn
I went on these forums to look up RA as I have just been diagnosed with it and, by chance, came across this LYME discussion in which I became very interested.  Allow me to share my experience and I hope it will help some of you.
In the 80's I became very ill with all the symptoms of what we know now are Lyme symptoms.  At that time it was virtually unheard of.  I went to 31 doctors and, at times, my depression was so bad that I would rather have died than continue the way I was going. One AM I decided that I would go to a new rheumatologist, just one more, and if he couldn't help then I decided that I would just quit...stop looking for answers and just, well, who knows?...my depression was profound.
I went to doc #32, asked him to pretend that he was the first I had ever been to and to just listen to me. Humor me.  He did, did every test you can imagine and in a week he called me and told me the diagnosis.  I had Lyme, late stage unfortunately, and immediately I started the IV therapy with the Claferon for 6 months and then later another round with the Rocephin for 6 mos. Then the oral antibiotics and another round a few years later. I was prounounced cured. My tests were coming back negative.
Yeah...right. Even my wonderful rheumatologist, whom I think the world of, does not believe I can still have Lyme though I have a great doctor/patient relationship with him now and he knows that I will never exaggerate my symptoms to him.  He just doesn't believe it's possible.
Pan ahead to today.  I have been diagnosed with rheumatoid arthritis.  Really?  Could those little spirochettes still be doing their dirty work?  My fatigue is unremitting, I have a heart problem now, need a pacemaker, have Sick Sinus Syndrome (a sinal node dysfunction), I have fibromyalgia, sleep apnea, panic disorder, Epstein Barr.......you name it, I have it.  (Okay, so now I AM exaggerating but you get the drift, I am falling apart!)
Please, do yourself a favor.  Get a physician who only deals with Lyme disease patients.  I went to a physician in Egg Harbor,. NJ and I thought she was radical. She has dedicated herself to treating Lyme patients.  My docs all thought she was radical and they scared me so I didn't go back. Big mistake.  From what I have heard over the years she's had huge success with her patients and many of them who were in bad shape are now leading productive lives. Me, because I was scared, I'm sitting here at home waiting for the other shoe to drop; like, what will I come down with next?
This past month, by chance, I needed some dental work done.  Because of mitral valve prolapse I am required to take antibiotics before a dental visit. I had just had this flare up of RA, had no idea what it was (diagnosed this week) but took CIPRO for the office visit.  My hands had no pain the next day.  I have researched antibiotic therapy as a treatment for RA but my wonderful doc still won't agree.
I think I still have Lyme disease and that I should be on antibiotic therapy until someone can tell me I am cured and until I feel like a person again. This all started when I was in my 40's and a vibrant, energetic woman who worked, took care of a family, had fun and led life to the fullest.  I am now in my 60's, an old lady by anyone's definition (it's how I feel) and sorry that I didn't fight the naysayers more than I did.
Keep looking until you find a doctor who listens to you.  Keep  searching, even if your search takes you miles away from home, for a doctor who believes what you say. Don't be afraid to tell a doctor you don't agree with him /her. Keep shopping-it's your life you're saving!
I live in SC, my rheumatologist is in Pa. I have just returned from my visit and I'll go back again in two weeks. However; if we can't come to an agreement about antibiotic therapy then we may part ways for awhile. I know how I feel and I know how I feel with Lyme disease!
Some people are alive just as an example to others of what NOT to do. Use me as an example and take charge of your health care as I should have.  Maybe it'll give me some good Karma. Good luck!  LMH
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Avatar_n_tn
Wow....thats quite a story.  I am so sorry to hear your troubles.  It took me a good two years to find a doctor who believes me.  I am now about 60% and getting stronger everyday.
Do you think you could find a LLMd in your area? Or at least in driving distance.  I travel fours hours to see my doctor which I find resonable.

Good luck.

Lesley
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Avatar_f_tn

My opinion ?

Lyme disease is real.
CFS is real.
Fibromyalgia is real.

I just had to add the other two to the list !


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A related discussion, vision problems with Lymes? was started.
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