I live Albany, NY. Since April of last year I have had neurological issues that no one can diagnose, and that seem to be slowly affecting more of my body parts all the time.
Started out with a weak feeling in my legs durring running. Within weeks it became a general cramping, sore, overused pain that overtook both my legs from foot to upper thigh in a matter of days starting with my calves and moving upward each day. This persisted for a month or so.
Physical therapy helped to a small degree until they put me into a heated pool (98 degrees) for a couple of weeks. After that my legs felt so weak, and shaky, and I had muscle twitches all over as well as shooting pains in my hands and feet. The terrible weak feeling subsided after stopping the pool treatment. A few months later the sensation spread to my arms, neck, and back of my head all within 24 hours. Same thing..weak, sore, overused pain. It was painful to dry my hair or carry heavy objects.
Now, 4 months later, I'm having light sensitivity in my eyes, headaches, momentary blurry vision (only for a second) when switching between close and far away things (like notes in class especially). I have numbness in the front and side of my neck when holding a position for a while, my ear goes numb on the side I'm laying on at night, it gets achy inside, and I feel like I can't hear well out of it. As soon as I pick it up though, it goes away. I have strange numbness on my torso that comes and goes, and the hot water from the shower makes the skin on my back completely numb. Hot water baths give me motion sickness with some nausea, and sometimes when I'm tired or stressed I get motion sick. Stress makes it worse. Sometimes the week before my period it is worse.
Also, when I am mentally tired or stressed, I get forgetful and confused, and have difficulty writing things out quickly. (ex..trying to write 1.50 and I write .150). Sometimes at work I have to stop for a minute and think about what I am doing. It's scary.
I have seen two neurologists, a rheumatologist, and casually a friend who is a neurosurgeon. Noone thinks I have MS.
I have NO evidence of actual weakness (in fact I was told I was quite strong) even though at times my muscles feel very weak.
I have had blood tests for EVERYTHING you can think of..vitamin deficiencies, muscular diseases like myasthenia gravis, viruses (lupus, lyme, ect..). Chest x-rays. You name it, I have been tested for it.
Just this month I had MRI's of my brain (two of my brain on two different occasions), cervical spine, and lumbar spine WITH contrast and everything came back perfectly normal. Doctors say no MS but have no diagnosis for me. It has been almost 9 months since onset of symptoms. I have Crohn's disease.
Even though I had two lyme tests (one was the Western Blot) and everything came back okay (except my doc said I tested positive for one thing but that many people test positive for it and it is not enough to be considered lyme disease), could it still be lyme?
Any help or insight anyone could provide would be immensly appreciated.
Last edited by Administrator; 12-16-2009 at 02:30 PM.
The Following User Says Thank You to ShellBell14 For This Useful Post: adean87 (03-04-2012)
It sounds like some intracellular bacteria, Lyme being one of them. You said you have crohns? Many think that it is caused by MAP bacteria. Which is treated with triple antibiotics so yes I think you are on the right path with wanting to try antibiotics.
Last edited by Administrator; 12-16-2009 at 02:23 PM.
I know EXACTLY what you are going through. Going back to last January I also began with unexplained neurological symptoms. I started with odd muscle twitching all over my body, muscle cramps, and overall fatigue. I also had a serious of infections... ear, sinus, mono. It was during the summer when things started to get interesting. I began to have serious memory problems that I couldn't shake. I began to stutter, which is my doctor immediately sent me to the ER to have checked out. I had the workup done, only to be told I needed to see a neurologist. The appointment was a few weeks away, but new symptoms came. I started to get numbness and tingling in all my limbs. My hands would not stop trembling. My doctor in the mean time told me it was stress and pumped me with SEVERAL medications.
The neuro appointment came and went with a serious of blood tests and what not. The neurologist said it could be stress, but didn't think that all the symptoms could produce so many neurological problems.
Fast forward to a few months ago. I began to notice that my eyes were having a hard time focusing. They would be fine one second, then they would turn blurry. It would go on for about an hour at a time. I also begin to notice that walking a short distance, my leg muscles were getting a cramp pain feeling. My arms begin to feel tired carrying a book. As you stated, there is no weakness, just a pain like feeling after. I can still lift extremely heavy items (at work, there is a female co-worker who asks me to lift the heavy boxes for her). I can explain it like this: When I extend my arms out, they feel so fatigued and tired, like I had them extended for hours. When I am at work, and lean forward to reach something, both legs feel like they are going to buckle.
One of the weirdest symptoms that I have begun to notice is my writing. While in class, and trying to write down notes... for some reason I spell words backwards. This semester is the first time I begun doing this.
I have seen a neuro twice, with not many answers. The only results that I have been told that are abnormal are blood results. I had the epstein-barr virus in my blood, but was told it was only "a trace amount." I also have been told several times that my red blood count is coming back well above normal.... as in, 3x the normal range.
Overall, I see a lot of similarities. I have been told it wasn't lyme, but I know that it is almost impossible to test for. My gp told me it could be a host of things like MS, MG, ALS, Parkinsons. So far tests keep coming back normal (except for the red blood count)
I am not a stressed person what so ever. Up until this January I was a pretty healthy person. In fact, I never had a cold or flu before. It was the first time I had an infection, and the first time in years I had to see my doctor. My doctor at first said it was college that was getting to me, but I was a junior by then. My doctor since then has stopped saying stress simply because the symptoms persist. As you can see, I needed to rant about this...
Hello! I was struck by your message because it is so similar to what happened to me. I have Neurologic Lyme Disease. After the birth of my first son I had joint and muscle pain/fatigue. I was eventually diagnosed with Fibromyalgia. Four years later after the birth of my second son I started having episodes of muscle weakness in my legs. I thought I was just standing too long on the hardwood floors without shoes. I would sit down and my legs would go crazy shaking, twitching so I couldn't even pull my chair in. Then it spread to my left arm so I would drop things. Then I started falling always because my left leg wasn't connecting with my brain. I went to the hospital thinking I had a stroke because my left side felt so strange. I have paresthesia and am dramatically affected on the left but the right side also. Walking downhill would turn my legs to jelly and get the sensations going-also squatting down to talk to my son. I would stand and they'd go crazy! I went through 2 years of testing for MS because of a few spots on my brain. They finally let me go unless something new developed. When you have has Lyme for a very long time you will never get a perfect CDC western blot. You need to find a Lyme Literate doctor to make a diagnosis based on history and symptoms. My doctor did a 6 week trial of antibiotics as this will catch lyme sometime during its life cycle as it has to leave the cell to do this. Wow did I get sick! Which meant I had Lyme. I also had Babesiosis. It took several years of oral antibiotics to get me well enough to even travel to see a specialist. I wish I had done this right away as it has made to most improvement to my health. I hope this helps!
After several months of treatment, my neurological symptoms were so bad when I had my MRI, I would have not hardly questioned an MS diagnosis. Through continued treatment, and a ton of research, I am getting more convinced when the symtoms get severe there is usually a coinfection. There are clues in some symptoms, but then again lyme can do almost anything, I know now after what I've been through. A stubborn infection is usually a coinfection. I would strongly consider babesia/bartonella. Levaquin is quite effective with bartonella. Babesia will require malasia meds. People always compalin about potential problems from Levaquin, but if they have been through what I went through/currently fighting that's the least of my worries. Here's my neurological symptoms-terrible ringing in ears, tingling/numb hands, slow thinking, anxiety attacks, headaches, earaches, poor memory, fog at times (getting much better with the last one). I hope this helps a little with direction.
Yes, your symptoms are aligned with how lyme can present - yes, among probably other possibilities. So you should get quality testing for lyme to rule it out (or in). Lyme is called the great imitator because it can present as about 300 different conditions/diseases, but still, it can be diagnosed with proper testing and clinical observations. Furthermore, treatment by antibiotics often results in a particular reaction called Herxheimer which is also taken as a positive diagnostic indicator... All in all, lyme is not an easy puzzle but it can be worked, and tends to be worked by those docs who find a good puzzle challenging, and as scientific minds, have personalities that don't always choose the easiest route in their careers.
You should ensure that quality testing is done. But you will need to find a decent LLMD. IGENEX is the gold standard per most LLMD's of the modern camp. You should test for borrellia of course, but also be sure to include erlichia, bartonella, and babesia, also maybe mycoplasma. The tests you should get would include looking for reversed-than-normal ratios of Vit D in blood (lyme often or typically causes D 25 reversed from D 1,25 normal ratio). Also be sure to do Western Blot per IGENEX guidelines and ONLY by IGENEX - no matter what any office or doc or lab tells you - because they have the best quality control procedures. Though Igenex was attacked a while ago, the attempt to discredit them was generally discredited itself, and they maintain various state accreditations as well. Doing the Western Blot by other labs is likely to be far less accurate (meticulous western blot procedures means higher paid lab staff, stricter lab staff and procedural oversight and management, etc.)... considering you only get one body in this life, it's worth just having the test done per Igenex guidelines or using their kit, and shipping it quickly to them per their instructions - doesn't cost much different than others, and frankly, I wouldn't care if it did cost a little bit more. Also may be good to check for high generic inflammation indicators such as SED rate (I may be wrong on that). The PCR test also. Forget about the traditional ELISA test - it's 40% or even more inaccurate and even the CDC says it's for surveillance and not diagnostic. Some docs say there's a new more accurate ELISA but I don't know about that.
Remember that people with lyme may test negative even with good western blot or other antibody-based tests, because your body's antibody response varies at various stages of the infection. This is partly because borrellia has different forms in its life cycle - a cell-walled spirochete and also a non-cell-wall, coated little ball ("CWD") form that is what hides out by hitchhiking stealthily inside your body's cells, like a piratical little rootkit on your PC.
Look for docs that recognize clinical diagnosis by front-line physicians, long-term antibiotic treatment particularly for entrenched lyme, etc. The IDSA guidelines have been pretty well discredited by rational doctors brave enough to not ignore lyme... IDSA has been discounted in terms of conflicts of interest, irrationality and very poor scientific reasoning. The Conn Attorney Gen also did investigation and rebuked them. There are private commercial conflicts within the IDSA which may explain the outdated irrational responses they have had. Lyme is a political hot potato - there is not yet enough outcry but since lyme is spreading this won't last forever, but our current generations of lyme patients will have a hard time finding LLMD's. These approaches will help dig up the docs who are LLMD's, but you still won't know how good their approaches are individually. My suggestion is to find and stick with a well-qualified internist who includes lyme in things he/she treats, but who probably doesn't treat solely lyme - treats chronic diseases as well as healthier people in an integrative way using the best of rational current scientific evidence and clinical experiences. Such a doc will treat you like your observations are valid input to be considered, will monitor your reported symptoms over time, will monitor blood chemistry/metabolism on a regular periodic basis during the year each year, and will look at your whole picture - advises patients on how to maintain healthy biochemical balances (diet, lifestyle, supplements, quality probiotics, whatever). Gives patient alternatives. May treat lyme with oral antibiotics or intravenous depending upon patient's medical situation, doctor's clinical experiences and other studies, etc. Will monitor closely how you respond to antibiotics, which you tolerate for how long, what you may be sensitive to; will try to treat you in a balanced but steady persistent manner. Keeps up with recent literature and studies and conferences nationally, maybe globally (lyme in every country now). Can be contacted in an emergency or for consultation. Is affiliated with a good hospital. Has patients who have fought lyme successfully and returned to the land of the high-achieving living. Will not paint a rosy picture or mislead you, but will encourage you to persist. Will not charge more than other specialists for consultations and periodic visits. (Though I warn you that while some antibiotics are among those in routine use, such as the --cyclines, zithromycin, etc., other some antibiotics which are highly effective may be very expensive, hopefully insurance will cover most of that.)
Such docs may keep a low profile out of necessity, so it may feel like a needle-in-haystack - but you will find them if you persist.
Lyme can present in similar patterns overall but each individual may present a bit differently. Up to date lyme diagnosis and treatment is not taught at most medical schools, nor is there sufficient economic motivators for the insurance industry and other economic supporters of research and medical education to change their tunes. As this is at teh cutting edge of medical care issues, and medical care by necessity must be conservative philosophically, that means it will take a long time and much suffering before better lyme diagnosis and treatment becomes accepted... Our first president, Washington, died of a throat infection complicated by the traditionally accepted, medically conservative modes of treatment at the time - mercury, bloodletting, no tracheotomy to allow him to breathe, etc - he had the best docs of the time attending, one of whom was on the cutting edge who shocked the other docs with suggestions to not give mercury, not let blood, and (gasp) put a little breathing tube below the infected swollen area. So he died. This is like the situation with lyme today - only the more progressive yet rational docs who are compassionate, scientific and gutsy - neither herd sheep nor wild-eyed nor pure profiteers - are the ones who are successfully treating lyme today. And it's worse than in the 1700's because today business is closely intertwined with medical science, education, insurance, legal landscape, etc. Many regular docs of various specialities steer well clear of anything lyme for fear of legal practice or insurance issues - they would rather stick to their normal business model anyway. But there are scattered internists, DO's, rheumatologists, psychiatrists, gerontologists, and pediatricians who are rational LLMDs willing to keep up with knowledge and treat suffering patients.
Lyme can present in similar patterns overall but each individual may present a bit differently - so it does not lend itself to the 5-15 minutes per patient consultation + rapid diagnosis typical medical practitioner's business model most practices are built upon. Like many of the better docs and dentists, many lyme docs do not participate with medicare and insurance due to the extreme amount of staff time to handle inevitable problems, and especially how insurance tries to limit how they may practice medicine and treatment. You can still submit claims and get reimbursed with your regular medical insurance - and there are some successful patient cases now on the books and on the internet, where treatment was attempted to be denied but it didn't hold up in court. I'm not saying all cases were won by patients - but many have been. (Someone should do a study on this.) So though that may happen it is becoming gradually less likely. Also there are laws against health discrimination in the workplace if you can still work and deliver, and there are laws prohibiting denial of insurance due to previous condition, I think .
All ticks at both adult and nymph lifestages carry tickborne diseases - typically at least 3 or more at a time, and it is uncommon for a lymie to have only one bug - coinfection is common. Bacteria transmission occurs from when they start sucking blood - not after 24 hours as some sources have said. The longer it's in, the more bacteria are shared. Also, lyme can hide out inside the body's cells for years and years and the person be asymptomatic for a long time, and up to half of people do not show symptoms (rash, fever etc.) at/around time of bite. (There are other tick borne diseases such as tularemia as well, but the ones mentioned here are the most commonly found ones.) Coinfection can be cured or remissed by antibiotic treatments. The term "Lyme" can mean one bug (borrellia) or multiple bugs ("Bb with coinfection"), depending on which doc you are talking with.
Look up and borrow, buy or otherwise find the movie "Under the Skin" - it's good and was funded by donations, not big business. It is sometimes shown at local theaters, public venues like libraries, and can be found on the internet. If you turn out to actually have lyme, have your family and friends watch it, so they don't think you are a nutty hypochondriac. Be forewarned that most media articles on lyme are misinformed and slanted - either towards the IDSA viewpoints or towards a sort of fatalistic sensationalist outlook
But you can fight off or at the very least control lyme, and have a life afterwards too.
Last edited by Administrator; 12-16-2009 at 02:20 PM.
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Hey. I read your info. If I had to take a guess it wouldn't b lymes but I'm also not a doctor either. You have some symptoms of lymes but not the typical symptoms. It took me years for a clynical diagnosses for lymes. Keep your head up and keep seeing your doc and keep up with the testing. I know it's exhausting and frustrating but keep with it. Do your own research too! That's just as important. Keep me posted
hang in there!