Lyme Disease & Multiple Sclerosis

Question

First of all, hello to all of you nice people that I've never met. Secondly, I've been going to a Neurology Dr. since 1997. First for Migraines and in 1999 or 2000 I started having Grand Mal Seizures. I was almost 45 years old. He ran some tests and told me and my Husband that I have Epilepsy, did a Lumbar Puncture, and told me that I had MS. Gave us some literature and told me to come back in 6 weeks and we would talk about what medication to put me on. After I had read all of the literature about the medication. I was so upset. We went back 6 weeks later and when he walked in the room, he asked how I had been doing and my Husband and I just looked at each other. I said fine and asked him what medication he thought would be the best. He didn't know what I was talking about. I told him what he told us 6 weeks earlier and he denied it. He denied everything. So the only thing that we could come up with is there had to be another patient with my name.                                                                                    I stayed with this Dr. until a few months ago when all of a sudden he stopped answering my questions. All of them. It was so strange. So I got another Neurology Dr. and went to her for the first time on the 21st of this month. She was in my room for an hour. She did tests on me that I had never heard of before. Now I should tell you that my Moma had Alzheimer's Disease for 7 years before she passed.                                                                                    I went to a new Neurology Dr. first of all because of the obvious reason, but I have been having some weird symptoms and to me they are really scary. I've been having trouble thinking of words, having conversations with people, not to mention the white matter on my brain that the 1st Neurology Dr. said is insufficient. And I saw in his notes that it could be either Lyme Disease or MS and should be examined further. That was back in March but he didn't do any further testing on me. I do have to mention that I have had 5 back surgeries and my back is deteriorating, I have COPD and Restless Leg Syndrome really bad. I have a list of Medication Allergies a mile long. To my knowledge I have never been bitten by a tick. I live in the city of Charlotte, NC. I'm on Morphine for the pain in my back because it's so severe. My new Neurology Dr. took 8 viles of blood along with the other tests she did on me. My Husband told me later that I failed the written and verbal tests miserably. But I did pass the walking tests. I was trying so hard to pass that one so I can get my Driver's License renewed. It isn't looking too good y'all. But I completely understand.                                                                                                                                                  And I stay so tired and sleep all the time. I didn't use to sleep this much. And it seems like my mind is tired and can't function right. Does that make any sense? Can you get Lyme Disease without being bitten by a tick? I'm so confused right now and I don't know which way is up. I'm a God fearing woman and I pray all the time to understand what's going on with my body. But if I can't hold a conversation, or think of words that I want to say, how can I understand what's going on?

JackieCalifornia · Accepted Answer

Welcome to MedHelp Lyme -- 

Sorry to hear all you have been through, and are still going through!  But you're persistent, or you wouldn't have found us here.  That's good.

I'll try to keep this (kind of) short, but there's more information if you are interested.

First off, you live smack in the middle of tick country, so yes, you could indeed have been bitten by a tick ... but these are not big fat dog ticks, they are tiny little one about the size of a gnat.  As a result, it's easy never to see the tick or its signature bite, which starts as a red spot and then spreads out into a red circle with a clearing area in the middle, like a bullseye ... so you'll see it called a 'bullseye rash.'  Lyme often starts that way, but not always.  I never saw a tick or had a rash, but I for certain had Lyme and another disease the same ticks often carry.  These ticks are not like big fat dog ticks ... instead they are tiny, like a poppy seed, so they are VERY easy to miss, and after a while, they drop off and you never know they were there ... unless you're diagnosed with Lyme etc.

Some docs won't test or diagnose Lyme unless you have or had a bullseye rash, but sometimes the rash just doesn't show up, or happens on the scalp, or disappears before you notice it.  So if you have or had a bullseye rash, it's a strong Lyme indicator, but if you didn't have the rash, you could still have Lyme.  Like me!

You say, "I saw in his notes that it could be either Lyme Disease or MS and should be examined further."  Lyme and MS have similar symptoms sometimes.  Most docs don't take Lyme very seriously, so I'm not surprised that the doc didn't pursue, but that doesn't mean you shouldn't.

Your other symptoms could be Lyme-related, but it's hard to tell ... because everyone has different symptoms, partly because the ticks often (about half the time) carry other, different infections with different symptoms and that need different tests to detect.

Some people get a lot of physical symptoms from Lyme, but some of us get more neurological symptoms like 'brain fog' and forgetfulness, and this variety of symptoms is partly what confuses docs.  Fatigue is common, because your body is fighting hard against the infection.  So when you say, "I didn't use to sleep this much. And it seems like my mind is tired and can't function right. Does that make any sense?"  It absolutely makes sense.

"Can you get Lyme Disease without being bitten by a tick?"  Not usually (tho babies can get it from their mothers before birth), but as mentioned above, it's very easy to miss the tick and the bite.  I never saw either one, but I sure as heck had big ole case of Lyme. Happens to lots of us, and it can take a while to finally figure it out.

Your confusion and difficulty conversing/finding words is not uncommon in Lyme either.  Again, 'brain fog.'

So.  What to do!?  Find a Lyme specialist.  Neurologists like to think they know all about Lyme, but there is a huge split in the medical community about how serious Lyme is or is not, and how to test for it, and how to treat it for how long.  Neurologists are very often in the "hard to get and easy to cure" camp, but that approach leaves a lot of uncured people out there.

I saw *20* highly trained MDs before one of them finally ran a Lyme test (since everything else had been tried!), and when it came back positive (!), the nice lady doctor said to me very gently that I could not possibly have Lyme because I wasn't sick enough.  Uhh, no.

I have an old old friend who had Lyme years ago, before it was so widespread, so I knew Lyme was a serious diagnosis and went right away with my test results to a Lyme doc.  A Lyme specialist is an MD, but can be any kind of MD:  an internist, a general practitioner, an allergist, an immunologist, and others.  

What Lyme specialists usually are NOT are:  infectious disease docs and neurologists.  That's really strange, because ID docs and neuros should be on top of the list!  But there is the split in the medical community in action:  'hard to get; easy to cure.'

     ===>  So the first thing I would do is find a Lyme doc.  You'll see the term LLMD, shorthand for 'Lyme-literate medical doctor'.  That's not a title or a degree, and no doc calls him/herself an LLMD ... it's just patient shorthand for a doc who truly understands Lyme and its co-infections.  So ... how to find an LLMD?  

I see you are in North Carolina (lotsa ticks there!), and you could post a message here on a new thread so it's seen by everyone titled something like "Need LLMD near [Charlotte] North Carolina" or wherever you are near, and someone here may have a recommendation.  We do NOT put LLMD's name in the open here, because of the split in the medical community between LLMDs and nonLLMDs ... medical boards can crack down on LLMDs and cause problems for them.  So you would likely get a private message through this website.  If you get one and can't figure out how to access it, post a message saying you need help reading a waiting private message (aka 'PM') and someone will tell you how.  

Another way to find an LLMD is to search online for 

      --- north carolina lyme disease ---

and you will get lots of leads to state/local patient groups who can give you leads.  

Also you can email to  --  contact [at ] ILADS  [dot]  com -- and tell them what area you live in ('near Charlotte NC') and about how far you can travel, and ILADS can send you names of LLMDs nearby.  It's no guarantee the doc is somebody you're comfy with, and if you get somebody you're not comfy with, then try another.  You'll be seeing the LLMD for at least several months and it's better to have a good and comfortable relationship imo.

Also at that ILADS website is a link to 'Dr Burrascano's Treatment Guidelines' -- he is a very well known LLMD, and his 'guidelines' are very useful when you and your family are ready to do some reading.  

Unfortunately, Lyme won't go away by itself.  It needs specific antibiotics, and for an extended period of time (several months, not a week or two), and it takes an LLMD to structure the treatment plan.  You might not want to tell your current docs that you are searching for an LLMD, because sometimes docs who don't take Lyme seriously get really cranky when they know a patient is seeing an LLMD, which nonLLMDs think are quacks.

Sorry for all the data, and if you find it hard to deal with all this, then ask a friend or relative to read this message and help you sort out how to find an LLMD.  We're always around here, some bunch of us, so let us know how we can help, okay?  And let us know how you do!

I had Lyme and one co-infection, and after the 20 docs, I found an LLMD and was treated and cured ... it took about a year, but definitely worth doing.  

Whew.  Enough for now.  Good for you for not giving up -- you found US!  Now let's get you a doc and get you diagnosed and treated.  Stay in touch -- best wishes to you!

JackieCalifornia · Answer

"I want her to do Neurology things and don't worry about the rest."

That's understandable.  Many of us have the opposite problem:  our various docs don't give a rat's behind what our other docs think or recommend, so that they are sometimes working at cross-purposes.

I try to keep all my docs in the loop when there is something going on with me, as a matter of efficiency and having the whole picture.

BigMoma57 · Answer

Good morning. We're getting a lot of rain here and it seems like I don't have not 1 joint that's not aching like crazy. But I love to listen to the rain so I have to take the bad with the good. The Occ. Therapist called me yesterday evening and asked me if I was wanting to come just to help my memory get better for driving. I told her I didn't want to come at all, that it was my Drs. idea that it would improve my driving skills. She laughed a little bit and said that they didn't do that kind of therapy there. I said okee dokee and asked her if she would send a note telling my Dr. that. And she did. It wasn't too long after that, I received a phone call, (and I'm getting tired of all of these phone calls) from the hospital once again from the Heart Dept. wanting to make an appt. for me to come in and put that heart monitor on. My Neurology Dr. talked to me about that too because she saw on my medical sheets that I keep, that I have an Irregular heartbeat. It isn't bad and I don't require any medication for it. About 5 or 6 years ago, my heart Dr. tried me on some medicine for it, and it made my blood pressure bottom out and I passed out. It scared my poor Moma and Hubby to death. Now I know she means well, but I had rather my Heart Dr. take care of my heart and there's too many things going on at one time. I can't take all of this all at once. I'm the type of person that can just handle one thing at a time. Let me get through with the needle in my back before you try to push me into something else. And besides, I told her she could send off to my Heart Dr. for my Medical papers and EKG's and she said I've never heard of him. That doesn't matter. She can't know every Dr. in Charlotte and besides, he's just one block away from her office. Literally. I told her that he had me wear that monitor for 3 days one time and she could get the results from him. That's when she said she didn't know him. Good grief. Oh--and she wants me to wear it for 3 weeks. I DON'T THINK SO!!! That's ridiculous. My Irregular heartbeat doesn't bother me that often and all I have to do is take a deep breath or 2 and my heart jumps right back into rhythm. If my heart Dr. isn't worried about it, why should I be? Now this Heart Dr. is the best one here in Charlotte. He did surgery on my Moma and when she was in ICU, he called the Nurses station while I was standing there asking them questions, so they told him I was there asking questions. He told the Nurse to put me on the phone. I asked him one question and he kept me on the phone for 6 minutes telling me about Moma. I was so impressed. And when I got off the phone, the Nurse asked me what he said and I started telling her and she said wait a minute, let me write this down because he sure did tell you a lot more than he told us. I thought that was so funny. And Moma did great. I don't need a Neurology Dr. taking care of my heart. That's what heart Drs. are for and I'm very satisfied with mine. I'll give her his name and phone # if she wants any info from him about me. I'm sorry for going off like this, but it just seems to me that she's wanting me to do things that aren't necessary. I want her to do Neurology things and don't worry about the rest. I have those covered just fine. I'm starting to second guess myself about picking her, but she's already did all of the tests so I might as well stick it out. Because one things for sure. I don't have to do a test, put on a monitor or anything else. Wearing a heart monitor won't help one way or the other diagnosing Lyme Disease or MS. And that's my story and I'm sticking to it. LOL  Thanks to all that listened to me rant this morning but she was starting to get on my nerves a little bit. I hope all of you have a great day. Oh--and I will tell her about that red and white circle that looked like a little bulls eye. Talk to ya later.

JackieCalifornia · Answer

A few replies:

You say above:  "the Neurology Dr. I have now said that she's checking me for Syphilis because that can be a sign of Lyme Disease. Or maybe she said MS--I can't remember now."

I have read that too, and it can't hurt to rule those out.  But syphilis is not a sign of Lyme disease ... tho both diseases are caused by similar bacteria.

You say:  "I asked her what would happen if I do have Lyme Disease and she said that she would turn me over to an Infectious Disease Dr. Now I know not to go to one."

I'd just smile and say thank you when she gives you the referral.  :)

You say:  "we remembered one time when I was sitting down and on the top of my thigh, there was a very small red ring with a white center. The center was about the color of my leg. It looked so strange because I couldn't find a bite mark or anything. It didn't itch or anything and after about 1 or 2 days it was gone."

Might well have been the Lyme tick's so-called bullseye rash.  You are lucky (?) you saw it, and remember to tell your docs that you saw it, because it helps them make a proper diagnosis.  I never saw a tick or rash on me, but many of us don't. 

You say:  "This is my body and nobody is going to tell me what I can and what I can not do with it. PERIOD!!!"

Hoorah!!  I like your spirit.  :)

You say:  "Should I find a Lyme Dr. now or wait until I get the results back? If I wait, I can give the Lyme Dr. all of the info. from this Neurology Dr. and her results."

I would hunt for a Lyme doc now, since they are busy people with so many ticks and so many of us!  There may be a wait before the Lyme doc can see you, so I'd get ahead of the game and get an appointment asap, but when you pick an LLMD, tell them you are waiting for test results from another doc that you would like to bring with you, but don't know when they will be ready (or if you do know, then I'd schedule the appointment for after that.)  

You say:  "... and she's wanting me to go to an Occupation Therapist. ...And she wants me to have a Lumbar Puncture, too.  ...The Drs. are saying so many things its confusing. Why do they do that?"

I think it's because they really want to help, but the state of medicine regarding Lyme is a total mess, and the docs often get confused too.  That's why seeing an LLMD is so important. 

You say, "I will be looking up quiet a bit of information on Lyme Disease. I'm the type of person that like to know in advance what I might or might not have. Even if I do forget most of it. lol"  

Good for you!  :)  I still have my huge three ring binder of stuff and information and test results I got when I had Lyme.    

You say:  "That's why God invented note pads. I will definitely keep in touch. Y'all have a great day."  

I like your spirit.  Between you and the bugz, I put my money on you.  :)  

Keep us posted.

BigMoma57 · Answer

I'm happy to hear that you're finally feeling better. I wasn't aware it took that long. WOW!! And I will definitely consider the natural antibiotics, especially since they're making a difference on you. Thank you for the info.  I hope you have a good day and take care.

mojogal · Answer

Hi. I am being treated. I am in my third year and finally feeling better.

You ay want to consider natural antibiotics. I have been on them for 6 months and they are making a difference.

Be well!

BigMoma57 · Answer

Hi mojogal. I'm so sorry to hear that you've gotten the run around. I don't understand why Drs. do that. They think they know what to do about something but they don't. I guess it's their pride. I'm really going to have my ears open around my new Dr. But on my first initial visit she seemed to be okay. She did tests on me my other Neurology Dr. that I had for 17 years never did on me. So one thing I can say about her so far is she's very thorough. You didn't say whether or not you got treated for your Lyme Disease. I hope you did and it's gone now. One thing that I'm really worried about is, if I do have Lyme Disease, I'm allergic to so many antibiotic pills, I don't know what they would put me on. I'm even allergic to Penicillin. But I'm not going to put the cart before the horse as the older people use to say. lol  I hope you're feeling better now mojo and I'll be talking to you. I hope you have a great day.

BigMoma57 · Answer

Good Morning to all of you lovely people. Jackie, Thank you so very much for all of the information. And Thank You for taking time out of your life to give me all of that useful information. I really do appreciate it. One thing I forgot to mention is, the Neurology Dr. I have now said that she's checking me for Syphilis because that can be a sign of Lyme Disease. Or maybe she said MS--I can't remember now. But I told her that was fine to go ahead and test me. I've been with the same partner for over 29 years so I know I don't have that. And I asked her what would happen if I do have Lyme Disease and she said that she would turn me over to an Infectious Disease Dr. Now I know not to go to one. Thank you for that. My husband and I were talking this morning and we remembered one time when I was sitting down and on the top of my thigh, there was a very small red ring with a white center. The center was about the color of my leg. It looked so strange because I couldn't find a bite mark or anything. It didn't itch or anything and after about 1 or 2 days it was gone. But that was the only time. And about 4 months ago, my chin, above my lip and the tip of my nose was almost cherry red. It stayed that way for 2 months I guess. Almost like I was sunburned. I don't really know if that has anything to do with all of this or not, but it sure was weird.  One thing I never do is stay with a Dr. I'm not comfortable with. I walked out on a Dr. one time while he was in the exam room with me. I did not like his personality at all. I told my Hubby, get my pocketbook and come on. We're leaving. The Dr. got mad and said you can't do that, I haven't examined you yet. I told him he wasn't going to either because he was a Quack. And we left. And I didn't pay him when I got the bill. I called his office and told them he's lucky I wasn't turning him in to the Board. I can't think of what you call it now. But I didn't hear from them anymore. This is my body and nobody is going to tell me what I can and what I can not do with it. PERIOD!!! Jackie I can't thank you enough for all of the information you've given me. It's helped me so much. Should I find a Lyme Dr. now or wait until I get the results back? If I wait, I can give the Lyme Dr. all of the info. from this Neurology Dr. and her results. Oh and she's wanting me to go to an Occupation Therapist. She seems to think this will help me. And she wants me to have a Lumbar Puncture, too. I had one of those years ago and that's when the other Dr. told me I had MS and then 6 weeks later said I didn't. The Drs. are saying so many things its confusing. Why do they do that? I think it's just like my Moma said quiet a few years ago, all Drs. want is your money. They just send you from one to another.    And I forgot to tell you Jackie, the first Neurology Dr. that stopped answering my questions, wanted me to go to one of his co-workers and then go to the hospital and get wired up and stay for 5 days to see if they could figure out why I'm having problems thinking of words and carrying on a conversation. My question to him was, if nobody is in the room with me talking to me the majority of the time, how will he be able to tell anything? Because if I'm not talking, you can't tell I'm having a problem thinking of my words. Jackie, they called my house 4 or 5 times trying to get me to go and do that. I told the lady that called no I wasn't going to do it because it just didn't make any sense to me. And asked her the same question I asked the Dr. and she said "Well, I don't know."  I said "Exactly. So no I won't be going." She said okay, thank you. I haven't heard from them since then. Thank you again, and I will be looking up quiet a bit of information on Lyme Disease. I'm the type of person that like to know in advance what I might or might not have. Even if I do forget most of it. lol  That's why God invented note pads. I will definitely keep in touch. Y'all have a great day.

mojogal · Answer

I was one who was diagnosed with MS but it's really Lyme. I was also diagnosed with Lupus but Lyme is the cause.

Jackie gave you all good information, I just wanted to add that many of us get diagnosed with MS when it's really not.

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