I am 27 and have been experiencing Neurological symptoms for a little over three years now. I started seeing a Neurologist three years ago, actually today, and he has been NO GOOD. MATTER OF FACT JUST A YEAR AGO HE STARTED TREATING THE MIGRAINES HE KNEW I HAD, FROM DAY ONE. My first symptoms were numbness and tingling in my extremities that appeared in my left leg, but slowly spread to the rest of my body. I found out about a year later from my Rheumatologist that it was actually Neuropathy, Restless Leg Syndrome as well as Myoclonus all of which are considered Neurological.
stiffness, major fatigue, depression, major headaches, spasticity, spasms, myoclonus, restless leg, tingling in head and extremities, vibration sensations, buzzing sensations when moving head from time to time, anxiety, major cognitive dysfunction, sleeping dysfunctions, inability to feel and recognize touches unless they are visual, muscle weakness – especially in extremities, extra tension in arms and legs with usage, chronic indigestion, walking (I have a gait), constant state of tiredness – inability to complete most tasks – moving or lifting items, exercising, walking, carrying grocery, brushing hair, etc
To make the situation worse on October 28th I woke up and the room was spinning and has been since. As soon as my Neurologist's office opened I called and informed them of the fact that I was unable to walk with out running into items or falling completely down. The nurse told me to lie down immediately and to do nothing until she called back. When she called back, she told me to either go straight to the ER or come there. I was told that I was suffering from Vertigo. Unfortunately he has done no testing, just continued to take me off of medication the last few months, which has not helped.
My Rheumatologist last month looked in my ear and noticed that my eardrum was swollen remarkably on the right side so decided to send me to my ENT. He also decided before the appointment to prescribe two weeks of high dose prednisone 4 5mg tablets in the am, and 4 at night as well as two 600 mg antibiotics daily for two weeks. This helped the eardrum go down as well as the apparent ear infection I had at the time. The ENT said that it could have made the Vertigo worse, but was not the main cause, and in turn sent me for an MRI with and w/o contrast and well as Vestibular PT. I had already done the Vestibular PT eval just 6 weeks in advance.
This time the results were much worse she said, she didn't give me the results from the first time. This time though when she scored me standing still and doing a few different exercises I scored only 13 out of 24. When she scored me for gait it was 8 out of 24, so both are pretty poor. She said that she hasn't seen it get that bad that quickly. Now I am facing life using a walker, my Vestibular Therapist ordered a walker this past Friday, and is hoping to keep it at just a walker.
We are unsure as to what is causing the Vertigo, I had several MRIs before years ago searching for MS, as well as a LP, a Evoked Potential and all came back normal. This MRI came back normal as well. Everyone seems to think the cause of the Vertigo still is Neurological, just not sure why, I am firing my current Neurologist though. But cannot get into another one for a few months.
My new Neurologist, the one that I was scheduled to see, until I could see the other, was really surprised to see how bad the Vertigo was. And to see how poorly it was treated. He was really blunt, and was really blunt when he called the other Neuro a donkey (not the actual name he used). He stated that if the Vertigo started in October then the MRIs and all of the other testing should have started in November. He was also surprised at the fact that I was unable to stand even 5 seconds without falling to one side or backwards by myself. He also started checking for Nystagmus, and I was surprised at how long he would stare at my eyes before he would actually tell me say anything. I am wondering if he saw anything strange, but he also stated that he wouldn't be upset if I decided to go elsewhere in the end, if I find that after treatment with him I am still unsatisfied. He was really nice and has decided to redo the ENG, do a Lumbar Puncture as well as a Lyme Titre and a few other things. He is so concerned with the Vertigo, its causes and the severity of it, he suggested that I keep my other appointment with my Neuro in Savannah (the one that I couldn't see until next month) for a consult. This has me really concerned as to what could be causing it, and how severe it could get. He has suggested that I limit my driving and that I walk only with my walker. What a bummer. Any ideas?
Others will doubtless post here, but here is my take:
Find yourself an LLMD, which is shorthand (and not an official title or designation) for an MD who takes a progressive view of Lyme disease. An LLMD can be any kind of MD (internist, GP, other) -- what counts is that they understand there is much NOT understood about Lyme, which mimics many other conditions.
I have had ALL of the symptoms you describe, just in different degrees, and I too was terribly ill when I went through 20 MDs to finally find an LLMD who diagnosed Lyme and a co-infection (diseases carried by the same tick that carries Lyme). I was treated with long term antibiotics and got well.
There is a terrible split in the medical community about Lyme: the CDC [Centers for Disease Control], the Infectious Disease Society of America (IDSA), and most MDs believe it is a short, non-serious ailment that goes away either on its own or with a couple weeks of antibiotics.
There is a competing view, held by LLMDs, many of whom are members of a different organization, International Lyme and Associated Disease Society (ILADS). They view Lyme+ as a tricky disease to diagnose and treat, because Lyme bacteria hide in your body in novel ways and are not easily found or eradicated. In addition, the medications that work on Lyme do not necessarily cure the co-infections, so a careful work up and testing are required.
This is cutting edge medicine, and unfortunately it has been overwhelmed by politics: the first MDs to stumble on Lyme were neurologists and rheumatologists, so they make their diagnoses based on whether you have neuro- or rheumatological symptoms like bad knees. They will usually diagnose only if you have a documented history of a tick bite and a spreading circular red rash, which many Lyme patients do not get. I didn't.
You may see comments here from people about the problems they have encountered from the prescription of steroids, because steroids suppress your immune system. Lyme is a bacterial infection, and suppressing your immune system is the exact wrong thing to do with a bacterial infection.
Existing Lyme tests are not very accurate, and yet too many MDs rely on them as gospel. Diagnosis of Lyme is a *clinical* diagnosis, based on history and symptoms, aided by test results, but not based only on test results.
I am NOT medically trained, so all I can tell you is what I have figured out by having this miserable disease and having conquered it once (then I got another tick bite, when I DID see the stinking tick, but the ID doc I showed it to, along with my positive test results were not enough for him to diagnose Lyme+. Go figure.). In your shoes, I would (1) find an LLMD, (2) get tested and evaluated, and (3) NOT take any steroids until I knew what I was dealing with.
Non-LLMDs are often snide to the point of cruelty when talking about ILADS and LLMDs, so be prepared. You could go to the new neurologist and have the tests done, and in the meantime find an LLMD and book an appointment. Proceed on all fronts.
In what I have read, lumbar punctures are not very accurate in diagnosing or ruling out Lyme, because the bacteria don't proliferate in spinal fluid and so are easy to miss. Given your neuro symptoms, they may find something, however. I found my way to an LLMD before anyone suggested an LP, so I didn't have to decide to have it or not, but many people here have had one to rule out other ailments.
The steroids are the thing I personally would avoid (not medically trained here!) until I had seen an LLMD. The ILADS [dot] org website has much good inforamation, including Dr Burrascano's treatment guidelines, and I believe a referral function to help you find an LLMD. Your new neuro sounds like a good guy, and he may be helpful, but in my experience they stick closely to the IDSA approach.
Please let us know what you decide to do and how it goes. Best wishes to you!
PS I had myoclonus too, and it's likely due to the Lyme bacteria using up magnesium in their reproductive cycle. Magnesium supplements took care of that little problem.
I was also having heart irregularities, for the same reason: magnesium carries messages to the cells on when to contract/beat. I would ask the MD if it would be harmful to try Mg supplements before trying them, but it's up to you.
I woke up one morning got out of bed and fell down. It was like I was drunk. My head was spinning, I had lost 100% hearing in one ear and then I began to vomit. I was bouncing off the walls. Called my Doc he sent me to an ENT who diagnosed Menears (sp?) disease, gave me valium and sent me on my way. It didn't help. I then went to an ear specialist who immediately admitted me to the hospital. I underwent many tests all of which were negative, the Docs were scratching their heads. Then they did an MRI of my brain and found that something was attacking the nerves in my inner ear. They put me on IV Rocephrin for 6 weeks and all the symptoms resolved. With my history of Lyme they concluded that the bug was attacking my inner ear. My ear Doc said that in all his years of practice he had never seen or read about anyone who had 100% hearing loss have it come back until me. Blame it on the lyyyyyymmmmmmeeeeee disease! That was in 1993. In 1991 I was diagnosed with Lyme after 2 years of hell, at that time I went on IV Therapy for 7 months (2 grams Rocephrin twice a day). I was fine (almost normal) from that incident in 1993 until 2006 when the beast came out of remission. I have been searching for a good LLD for the past 3 1/2 years and finally found one here in Maryland. Tomorrow I start IV Therapy again. I'm going to blow those ******* bugs into the next world! I have so many stories like this I could probably write a book...and should!
I’m sorry to hear what you are going through, I too had and still have quite a few of the same symptoms as you. Currently I suffer from cognitive/focusing problems, vision problems, fatigue, muscle twitches, odd smells, headaches, and vertigo. I always feel dizzy. I saw a LLMD for 7 months and was treated, the treatment was definitely helping but had to stop due to C.diff. infection. I’m still getting through each day, but its hard.
I went down the same path as you, neurologists and other doctors. Its so frustrating. Keep your head up and push! Push your doctors that’s all I can recommend!
I do have Lyme Disease, I was actually diagnosed with it back in January of 2007 and given a small dosage of antibiotics. We aren't really sure that they did anything to irradicate it though. I see that it can cause Meningitis and Encephalitis, I am certainly hoping that we are one step closer to finding out the root cause of all my problems. But I see that there are no treatments for either of these, which scare me. I have redone the ENG, and it shows that since I had it done in November that I have less usage of my right ear. So there is something affecting the right ear and its nerve, just aren't quite sure, what. My PCPs first thoughts were of course the two conditions I mentioned earlier, and when I saw that they can indeed be caused by Lyme it has me concerned.
Have you consulted a Lyme specialist? Many otherwise good, well trained MDs are totally lost when it comes to Lyme and other diseases the same ticks can carry.
Meningitis and encephalitis are inflammation of the brain and associated structures, and once the cause is found and treated, it can go away. Lyme can cause inflammation, so there may be a connection. The first step is getting the right diagnosis so you know what to treat for. That's the reason to see a Lyme specialist. If you need help finding one, let us know and we'll send you some data on how to do that search.
Did one bring on the other? I couldn't say. What I can share is that I had the Vertigo show up a few years before was dx'd with Lyme. Also have/had Fibromyalgia. Have had Arthritis since I was 21/22 years old as well. Possible thyroid problem as well.
The standards meds and positional treatments did nothing for my dizziness. Thankful I did not have Meniere's though!
I was diagnosed with Lyme and had the same symptoms as you. I would suggest getting a pic line and have I.v. Antibiotics given to you daily. That was the only thing that cured me. I feel for you though. Understand that a lot of doctors don't understand Lyme at all. I was always treated as if I was lying because of how young I was. There is a facility called envira in Arizona that also is on the cutting edge of cures if you can look into it. Remember to stand your ground. You know ur body best!
I am 40 years old and I first had Lyme when I was 19. My first symptoms began as just achy legs and headaches daily. It took the doctors over a year to figure out what it was. After the course of antibiotics, I felt like a new person, then it seemed to come back year after year with new symptoms. Fatigue, RLS, tinitus, achy joints, arthritis, headaches, can't sleep, tingling in hands and feet, neck pain, back pain, heart palpitations, shortness of breath, now the newest symptoms this year are weight loss, hair loss and just last month I had an episonde of vertigo with vomiting and ended up in the er with severe dehydration and now the same thing happened again a week ago. They are now treating me for Lyme disease again. I have been treated every year at least once or twice for the past 21 years. How do you permanetly get rid of these things? Please help with any advice.
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