I'm very sorry to hear of your suffering.
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.
[Not medically trained here!!]
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!
Not all LLMDs use PICC lines -- there is a line of thought that oral abx work just as well and without the possible problems and risks of IV.
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.
What is the planned treatment? -- what meds, for how long?
Were you tested for infections other than Lyme?
Sorry to hear about all you have been through --
Did Chiari malformation show up in your MRI? I recently got diagnosed with Chiari Malformation type 1 after an MRI. Basically my brain is being pushed into the opening in my skull where my brain stem is. I've had pain in this area of my head my entire adult life. My neurologist is telling me that this is a developmental disorder, but on ninds.nih.gov they are saying that Chiari malformations can be caused by "traumatic injury, disease, or infection." I've had a long history of many of the symptoms you listed. There were 2 times where I had horrible vertigo for nearly a week straight. Lately I've been having short pulses of balance disruption among many other strange things.
I had Lyme when I was 8 y/0. I'm wondering if the malformation was caused by the Lyme. I've only recently dived into this crazy world of conflicting opinions about Lyme disease, but so far I'm seeing that Lyme is known for causing swelling of the brain. There's clearly the possibility of a connection. Severe Chiari malformations can be treated by surgically expanding the size of the back of the skull.