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Lyme Disease Community
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Avatar universal

Lyme Symptoms

I tested positive for Lyme trough Igenex in 08 but for various reasons did not get adequate treatment. The last three years I have had a lot of neurological symptoms including terrible fatigue, sleepiness neither relieved much by sleep, tremors all over, muscle weakness, weight loss, nerve pai and now pain and weakness in my legs like I just finished mountain biking. I'm also having twitching to the point of almost grimacing on the left side of my face and neck. The symptoms in general are much worse on the left side of my body. Could this really be Lyme?  No doctor has found any other diagnosis. I also get tendon flares but haven't had as many lately. The symptoms just migrate around and I don't know what to think. Even my sleepiness seems to be more on one side of my head if that makes any sense.
13 Responses
Avatar universal
Welcome --

I'm sorry to hear about all you have been through -- and are still dealing with.

Have you consulted with a Lyme specialist in Knoxville?
1763947 tn?1334055319
Yes that is lyme. The longer you wait to treat the worse your symptoms will get. I waited over 20 years misdiagnosed and now the lyme is affecting major organs.
Avatar universal
I don't know if you will see these messages, but in case you come back to browse here, let me be more blunt:

I'm not medically trained, but I agree with mojogal.  Lyme disease is a serious bacterial infection that hides in areas of the body that the human immune system cannot locate.  

Seeing an experienced Lyme specialist would be my next step.  Please do not wait, because Lyme will not go away by itself, and it can do permanent damage to the body and the brain.

If you need help finding a Lyme specialist in or near Knoxville, please let us know.  Best wishes to you --  
Avatar universal
I didn't know of one being Knoxville. My doctor referred me to one in D.C.
Avatar universal
Do you know if having tremors all over is common for lyme?  I get bouts of it in legs, arms, shoulders, hands and even my jaw.  It's very difficult to do things when everything is shaky.
Avatar universal
About seeing a Lyme specialist in Knoxville:  your doctor may have a preference for the doctor in Knoxville, and if so, he should be able to tell you why it's worth traveling almost 500 miles each way between Knoxville and DC.  Unless your current MD has a REALLY good reason for you to drive 1,000 miles roundtrip to see that doc (and it won't be only one visit to treat Lyme), I would find a Lyme specialist closer to home.

Here are some other ideas:

     1)  I searched online for    --- LLMD knoxville TN ---     and got quite a few possibilities.  "LLMD" is not a title or degree:  it is patient slang for 'Lyme-literate medical doctor", meaning a doc who really does understand Lyme and know how to treat it.  Lyme is a quite new infection, and the first MDs to discover it mistakenly thought that Lyme was Lyme was like strep throat:  a couple weeks of antibiotics and you're cured.  

However, that has turned out to be wrong according to many other MDs, but too many MDs still believe what they were told in medical school some years ago, that Lyme is rare, hard to get, and easy to cure.  Lyme is much more complex than that, and finding an up-to-date MD is extremely important to find for diagnosis and treatment.  

     2)   I also searched for     ---  university of tennessee lyme disease  ----
and got many interesting leads.  

     3)    --- Lyme Disease Association of Tennessee --- (based in Maryville TN) has a page on the Facebook website, and you might find some leads there.  This could be a good place to start for recommendations.

If all this seems too much to deal with (Lyme can do that to you!), then ask a friend to help you find a Lyme doc.  It's what I would do!  

I personally saw 20 MDs before I was diagnosed with Lyme and another infection the 'Lyme' ticks often carry.  Dr #20 gave me the positive Lyme test results, but told me I didn't 'look sick enough' to have Lyme -- !!!  I had an old friend who had had Lyme some years before, and I knew that finding a Lyme specialist was absolutely necessary, because Lyme is such a new (but rapidly spreading) disease.

We do NOT post the names of Lyme doctors here in public, because some states may try to get the medical licenses of Lyme-savvy docs taken away.  

Do try to find some Lyme-related patients groups near you, as mentioned above -- it can be a very good first step to finding a Lyme doc nearby.

Let us know how you do, okay?  All good wishes to you --
Avatar universal
You ask above:

"Do you know if having tremors all over is common for lyme?  I get bouts of it in legs, arms, shoulders, hands and even my jaw.  It's very difficult to do things when everything is shaky."

Lyme affects different people in different ways and gives different symptoms:

--  Some of us have circular red rashes that fade away, even tho the infection is still in the body; others of us (like me!) had no rash at all.

-- 'Brain fog' happens to some of us -- it feels a bit like having the flu and a hangover at the same time.  

-- Aches and pains are also common in joints and muscles, but not everyone gets them.  This may be a version of the tremors etc. that you are getting.  You appear to have *something*, and I personally would go to a Lyme specialist, because other kinds of  docs don't always think of Lyme as a possibility.

Here are symptoms of Lyme, from the Mayo Clinic website.  You can find the website by searching --- mayo clinic lyme disease --  :

========= Clip from Mayo Clinic Lyme Disease page ============

The signs and symptoms of Lyme disease vary and usually appear in stages.

The following is heavily borrowed from the Mayo Clinic website page on Lyme disease (see their website for more information):
-------------------------------------------------------------------------------------------
          1 -- Early signs and symptoms

A small, red bump often appears at the site of a tick bite or tick removal and resolves over a few days. This is normal after a tick bite and does not indicate Lyme disease.

However, these signs and symptoms may occur within a month after you've been infected:

                    a -- Rash. From 3 to 30 days after an infected tick bite, an expanding red area might appear that sometimes clears in the center, forming a bull’s-eye pattern. The rash (erythema migrans) expands slowly over days and can spread to 12 inches (30 centimeters) across. It is typically not itchy or painful.

                    b --- [A red, bullseye shaped rash called] Erythema migrans is one of the hallmarks of Lyme disease. Some people develop this rash at more than one place on their bodies.
    
                    c --- Flu-like symptoms. Fever, chills, fatigue, body aches and a headache may accompany the rash.

          2 -- Later signs and symptoms

If untreated, new signs and symptoms of Lyme infection might appear in the following weeks to months. These include:

                    a -- Erythema migrans appearing in other areas of your body.

                    b  -- Joint pain. Bouts of severe joint pain and swelling are especially likely to affect your knees, but the pain can shift from one joint to another.

                    c -- Neurological problems. Weeks, months or even years after infection, you might develop inflammation of the membranes surrounding your brain (meningitis), temporary paralysis of one side of your face (Bell's palsy), numbness or weakness in your limbs, and impaired muscle movement.

          3 -- Less common signs and symptoms

Several weeks after infection, some people develop:

                    a --  Heart problems, such as an irregular heartbeat. Heart problems rarely last more than a few days or weeks.
                    b --  Eye inflammation.
                    c  --  Liver inflammation (hepatitis).
                    d  --  Severe fatigue.

          4 -- When to see a doctor

                     a -- If you've been bitten by a tick and have symptoms

Only a minority of blacklegged tick bites leads to Lyme disease. The longer the tick remains attached to your skin, the greater your risk of getting the disease. Lyme infection is unlikely if the tick is attached for less than 36 to 48 hours.

                      b -- If you think you've been bitten and have signs and symptoms of Lyme disease — particularly if you live in an area where Lyme disease is prevalent — contact your doctor. Treatment for Lyme disease is more effective if begun early.

          5 -- See your doctor even if symptoms disappear

It's important to consult your doctor even if signs and symptoms disappear — the absence of symptoms doesn't mean the disease is gone. Left untreated, Lyme disease can spread to other parts of your body from several months to years after infection, causing arthritis and nervous system problems. Ticks also can transmit other illnesses, such as babesiosis and Colorado tick fever.

--end of clip--
=========================================================
Avatar universal
I saw world renowned LLMD in DC and he put me on oral abx to start in two weeks. I feel like they didn't listen to a lot of my symptoms and just went from my positive Igenex test in 08. I left feeling like I had a lot of questions. I have so many neuro symptoms it's scaring me. Tremors, nerve pain and recently trouble walking at times. I can walk but it's just hard and I feel like I don't know where my feet are all the time. I can't decide if this guy knows his stuff or not. Anyone with experience with this doctor in DC and in particular resolving neuro problems with antibiotics?
Avatar universal
I'm sorry your visit with the doc didn't turn out better ... and BIG POINTS to you for not just crawling into bed and staying there.  You got grit!  That's what it takes.  (I personally went through 20 MD's before I finally got a Lyme and babesia diagnosis, so I hear you.  Some of the docs were nice but clueless, some were indifferent, some thought I was nuts, etc.  Then one of them figured it all out, I got treatment, and got well -- I say 'go for it.')

If your old tests were from 7 years ago, a lot could have changed ... like you could have been bitten by some other bug and contracted an additional infection, and new medical discoveries and treatments pop up all the time.  

So yeah, I would get a second opinion about the old symptoms and any new ones.  Starting fresh with a new doc, and providing copies of your tests to date, is a good place for the new doc to figure out what's up.

If you do not have copies of all your previous test results related to your ailment(s), the old doc's office should give them to you without charge.  You don't need to say why you want them, but I always just smile slightly and say, "It's for my file at home."  Be sure to specify that you want FULL copies of ALL test results to date, otherwise the overloaded (or lazy) file clerk may not copy everything for you.  I think by law they probably have to give these to you.  

If you are not feeling up to doing all this data gathering, ask a friend or family member to call the doc's office and find out what kind of authorization or form letter they want to make the copies and send them to you.  Your signature may be required, but your helper can do everything else and you just have to sign.

Sometimes starting fresh with a new doc is a good way to go.  Take care, and keep us posted, okay?  
280418 tn?1306325910
Hello, I haven't been on here in ages, but I did go to the Dr. in DC.  I think he is very knowledgeable, but he has PAs working for him that I don't care for, so I request to see him.  If you watch the documentary "Under Our Skin", he is in that documentary.  I trust him, maybe you just caught him on a bad day.  However, a second opinion never hurts, and as JackieCalifornia said, things may have changed since your 08 labs.  I haven't been treated for about 3 years and I'm considering a more natural path to healing, but haven't embarked on looking for a doc that would be closer to home and one that would focus more on natural remedies as of yet.  Best of luck to you!
Avatar universal
Hello there!  We miss you, but it's good you are out living your life.  Hope all is well -- "J"
Avatar universal
I've just started the abx, like today.  I have so many questions, like whether tremors are a common symptom. My MRI had nonspecific white matter but the neurologist said it didn't have an MS pattern. Is it realistic to expect to see any results from abx in 6-8 weeks (i.e. two cycles?). My tremors have gotten much worse the last several months and now I have a lot of sensory symptoms, like cold numb spots.
Avatar universal
I've been on abx for 3 cycles as of now. I haven't seen much improvement yet. Should I be worried?  Also my symptoms are far more concentrated on my left side, including a really annoying sleepiness just on the left side of my head. Can anyone relate?  My symptoms are just so weird and miserable I don't know when to expect to see improvement.
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