Im looking for some help, I am running out of options here and I thought I would try this site again.
four months ago I came down with some kind of virus and was struck with all kinds of symptoms that scared and confused me. It started with a headache, the worst I had ever had, then a fever, muscle twitches, hearing loss and vision problems. This went on for about a month, I went to the ER several times and had blood work and cat scans done but they found nothing alarming. They said I had some kind of influenza but they weren't sure. At this point I started to have some memory problems, I was getting confused easily and found it hard to complete tasks I had done every day prior to getting sick. I was referred to a neurologist by one of the ER doctors at the end of february and after a neurological assessment determined that I was fine, "probably stress" he said. I also had an EEG done before my appointment to rule out epilepsy because I had been having seizures while I was sick as well, the neurologist saw no irregular activity.
In march things seemed to be getting worse, I stopped working because I couldn't do my work anymore (I worked as an electronics technician) I was getting fevers on a nightly basis and the muscle twitching was getting out of control. The thing that was the most worrying was my memory, I was having moments where I couldn't recognize my family members and entires days that I couldn't really recall.
In April I was a complete mess. I honestly don't remember much, I was in bed most days because I am fatigued beyond belief and my head would hurt so badly when I was on my feet for a few hours. I went back to the ER towards the end of April because of a massive seizure like episode, they couldn't do anything for me there so they referred me back to the same neurologist who denied me citing that he had already evaluated me and determined nothing was wrong.
This month has been really hard, I've all but given up because I am starting to feel crazy. I saw a psychiatrist and she told me I was depressed, but who wouldn't be given what has taken place. I had been wanting to get an MRI for months and finally got a chance when I participated in a research study for people that smoke cigarettes (because the wait where I live for one is 8 months). I was given the results on a disc and had my GP look at them and he saw nothing wrong but scheduled me an appointment with a new neurologist to evaluate my current condition and have the MRI read. The MRI was 1.5 strength and done without contrast.
At this point I can't remember what I have done after about an hour or so and my long term memory is shot too. I have a head ache every day from the moment I wake up until I go to bed, some times it makes me sick. My hands and head shake constantly even when I am perfectly calm, I am now having difficulty eating due to the shaking. speaking has also become very difficult, I used to talk to customers on a daily basis and had a very broad vocabulary. I stutter and slur now so I don't bother talking much anymore. I have strange sensations all over my body, hot, cold, shock like feelings and muscle twitches constantly. I have had my thyroid, B12, iron levels checked, no tumors or anything major had been found through the imaging. I just have no clue what to do anymore.
Does anyone out there have any suggestions or similar experiences? I really can't live like this anymore, its not worth it.
Is there any chance that this could be lymes disease? I was bitten last summer but I am not sure if I had a rash? I also posted this question in neurology and got a response suggesting getting tested for lymes, so I thought I would post here. I live in Canada and I am not sure about the procedures here in terms of getting tested. Just looking for any insight some one may have.
I am 24 y/o, male, no previous health problems, don't drink or do drugs.
Hi, sorry you are sick. Yes, I have been through much of the same and this can be lymes. Most mainstream doctors don't really believe in Lyme as they give you two weeks of antibiotics and say that will cure you but it doesn't. You don't have to have the rash to have Lyme.
What you need to do is find a Lyme literate doctor. LLMD is what we call them. They can be any type of doc who understands and has studied Lyme. Lyme can come with co-infections, other illnesses which just complicate things.
You should go to our association at ILADS dot org and contact them asking for a LLMD closest to you. You may have to drive because there isn't always one near you. They can tell if you have Lyme or not and treat you properly.
You are not crazy but Lyme can give you anxiety and depression as a side effect.
Since I am still active, my memory is not the best so others will let you know if I have forgotten anything.
Mojogal has covered all the basics above -- you have run smack into the problem mainstream medicine has with Lyme: they are in denial. When Lyme was first recognized just a few decades ago, the first impressions of those discoverers were set as the standards for diagnosis, but unfortunately, those standards have not been updated (despite more recent research) because those discoverers are still high up in the field and see no need to elaborate on their early work. It sounds too strange to be true, but it is.
There are however more progressive MDs (as mojo notes, called 'LLMDs' among us patients to separate them from the non-progressive ones) who understand the mess that is. Neurologists and infectious disease ("ID") MDs are the specialties one would naturally turn to for help, given the symptoms, but sadly, they are the ones most resistant to the more recent research. GPs and other kinds of specialists defer to the ID docs and neurologists as the experts in the field, and around and around it all goes.
I personally went through 20 MDs before getting a diagnosis, and then I did as mojo recommends: find an LLMD. I understand vaguely that LLMDs can be a little hard to find because of the national health system, which sets diagnostic and treatment standards for all of medical care -- in the US, at least until Obamacare kicks in, docs are able to practice according to their conscience, so it may take a bit more looking where you are, but it is definitely worth doing.
There is an organization in Canada called 'canlyme', short for Canadian Lyme Disease Foundation. If you search online for 'canlyme', it will pop up the link to their website.
I am sorry for all you are going through -- you sound very grounded and thoughtful, and I imagine that when you find a doc who understands Lyme, you will be hearing some very different advice than you have gotten already.
Just now I also searched online for
---- canadian lyme disease -----
and got more hits that are of interest. Turns out that May is 'Lyme disease month' in Canada ... which is good, because it means there are people out there who think big thoughts and can help you figure out what is going on.
The Lyme ticks also carry other infections that complicate the diagnosis for MDs who don't understand Lyme, and an LLMD will be on the lookout for those too.
Take care, and let us know if we can help -- and drop us a line to say how you are doing, okay? Best wishes --
To get an overview on what Lyme disease can do, what the lab tests are (both pro and con) and I always refer people to the articles written by Tom Grier. Google his name (this forum restricts the giving of links) and start reading. :)
You certainly might have Lyme disease but until you find an 'llmd' who is knowledgeable you might not be tested correctly. Be advised by someone who knows (me) that your Lyme tests can come back as neg. for the disease but you can still have it. (Grier also explains some of the reasons for that)
CanLyme is an excellent site, as mentioned by Jackie above.
I don't know whether to hope you have Lyme or not. :( If you do, though, you have a good chance of getting better.
BTW---- no rash doesn't mean you don't have Lyme. Between 50% and 70% of infected people never get a rash. I didn't.
My experience with new people, such as yourself, is that they need to ask questions---- and ask questions---- and ask even more questions! So please do. You can't possible ask too many questions.
Thanks a lot guys, really appreciate the support, you have no idea.
First thing I am going to do is attempt to make contact with an LLMD and see if I can get the ball rolling on this. At the very least I will be able to rule out lymes as a possibility.
Could any of you possibly elaborate on you're experience with memory problems? or how you're cognitive functioning has been affected? Also had a question about tremors, my head and hands shake all the time :(
Really guys, this is more than I expected, I can't thank you enough.
One of the tricky bits about Lyme is that no two presentations (symptoms sets) are the same ... some of us get neurological symptoms, others more joint-related, some have digestive issues, some can't sleep. It's partly what gets the docs so confused, because they are accustomed to just one set of symptoms for a particular disease, and the complications thrown in by co-infections that the same ticks often carry just muddles the diagnostic picture even more.
I had very little joint involvement, but was mentally out of it ... my best description is like having the flu and a hangover at the same time. My memory was shot, and I just wandered around in a fog. I gained weight (partly from eating to try to counter the fatigue), but it's fairly common in Lyme due to the hormonal and endocrine effects of the infection.
For the tremors (and for muscle aches if you have them), you might try magnesium supplements, which are often needed because the Lyme bacteria use up magnesium (Mg) in their reproductive process, leaving the body deficient (on top of the fact that the usual Western diet is often short on Mg). Any variety ending '-ate' is said to be most absorbable: Mg malate, orotate, aspartate, citrate, etc. I find capsules (with powdered Mg insdie) rather than hard, compressed tablets to be more effective, perhaps because the capsules are more digestible, dunno. Mg can also help clear up your brain fog sometimes.
When you see a doc, be sure to tell him/her that you are taking Mg and whatever else, so they can factor that in to your symptom array.
One of the sad facts about Lyme is that the docs who would (in a saner world) be experts on Lyme are often the biggest lunkheads: infectious disease docs, rheumatologists, and neurologists all take the position that Lyme is hard to get and easy to cure, and any remaining symptoms after a couple weeks of antibiotics are just your immune system over-reacting to a now-gone infection.
Other specialist docs often take that same approach as well, which is why finding a Lyme specialist is so critical. CanLyme can likely help, and Mojogal up above already mentioned getting a referral from ILADS by sending an email to:
contact [at] ILADS [dot] org
Tell them where you live (what city/area) and how far you can travel. They can send you a list of LLMDs reasonably near you. There is however no guarantee that such a doc is any good ... like any developing area of medicine, there are some wacky docs out there, so keep your antennae up for oddballs. (Like you feel up to policing the docs, I know.)
Sometimes you end up changing docs if the first one doesn't suit, but don't worry, just try one and see how it goes. We're always here to help with any comments about your concerns.
No one here on this site is medically trained that I know if, but we've all danced with Lyme and are glad to share what we've learned.
You are welcome. How is this example, I am thinking of something I have to do, I turn my head to put it in my iPad and I have forgotten what it was I was going to do. Very frustrating.
I often times can't think of a name or a simple word in the middle of a conversation.
I have the shakes a lot. When I was getting an eye exam yesterday, I had to hold my neck because it was twitching so much.
There are some people that get more Neuro Lyme symptoms, that includes me and then there are others who may get more arthritic type of pain. A lot of this has to do with which co-infections you may have.
I am glad you are going to get to see an LLMD. Fight on.....
quick update, I contacted some one from the canlyme website and the only LLMD in Nova Scotia (where I live) has essentially been run out of town by the medical community. The only recommendation I got from the person I spoke with recommended that I get tested through Igenex? The tests that were recommended are $1200, unfortunately due to my current financial situation that is impossible.
I was read some information on a site for some specific testing that can be done for free in Canada. This is basically routine stuff you can request from you're GP.
C-6 ELISA (somehow different from the regular ELISA I guess) Ehrlichiosis, Bartonella, Rocky Mountain Spotted Fever and Babisiosis?
My only option at this point is to get the standard testing and request the ones I mentioned above.
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