Lymes?

[jan]

I just found out a rash I had 2 summers ago very neatly fit the description of the rash assoc. with Lyme's. I was tested, but it was neg. (dr. never saw the rash). I have been doctoring for over 1 1/2 yrs. with a neurologist for dizziness, fatigue; hearing,but not understanding; feeling like I have a brain fog, while having that fog feeling I can't concentrate, hold a conversation, talk or spell well.  I lose my balance once in awhile and I get a wave feeling in my head that feels like it is going to knock me over.  I had a sleep study,blood work, EEG, EMG, 24 hr. holter, echo, and finally a tilt table.  They have found I have Inappropriate Sinus Tachycardia and neurocardiogenic syncope.  I, also,have mild MVP with mild MR and TR.  Since starting treatment for these I feel much better, but I still have my days of fatigue, although they aren't as frequent or 1/2 as bad.  I, also, have some joint pain from time to time. I've always contributed that to Raynaud's. Could this possibly be from Lyme's, most people seem to suffer with more symptoms? Have you ever heard someone describe a wave going from back to front on top of their head?   Sorry so long.  Thank you.

[CCF Neuro[P] MD, RPS]

Dear Jan:

The typical rash seen with Lyme can also be seen in other skin related diseases or entities.  The first question is whether you live in an area associated with Lyme disease.  It would be rare for someone who lived in southern california to come down with lyme.  Second, what is your lyme titer?  Lyme seems like it can mimic alot of different disease entities.  If you think that you might have lyme, by all means go get tested.  We have seen patients with many different types of disorders comment on the feeling of a wave (usually of pain) over their head.  Many of these patients have migraine or a migraine variant.  Some of these patients have an autoimmune disorder (Raynaud's would qualify).  So, I would talk to your rheumatologist or neurologist and see what they think, given your disease entity.  The heart problems can also cause many of the symptoms you describe.

Sincerely,

CCF Neuro MD

[Nal]

First to Jan,
   Was your lyme titer negative or equivocal (neither positive nor negative)?    

Second to the Neuro,
     I have some similar symptoms, but I also get burning througout me body, twitches, tingling sensations, ear and throat problems and feelings like one side or the other of my whole head and face are going to go numb.  I saw 3 neuros who all agree this cant be neurological.  My lyme titer was done 3 differnet times.  The first 2 times it came back neither positive nor negative (something called equivocal?)  The third time it did come back negative.  What could these test results mean?

[jan]

Thank you for your response.  I live in NJ and that particular summer was bad.  We found ticks (not deer ticks) in our home and even 1 in our bed, we had to treat our yard.  We have seen deer in our yard, even right next to our house.  When you ask what my lyme titer is, I'm not sure I know the meaning of this.  Is it a count of some sort?  You can have Lyme's and a neg. result, can't you?  If my dr. gives me another and it is neg., should I let it rest and chalk it up to my heart?  Most of the people I have heard of with Lyme's have more serious symptoms, but reading about the rash has made me a little wary.  Thanks, again for your time and help.

[jan]

Would you mind giving me information about Raynaud's?  I don't really know anything about it, other than the symptoms my sisters and I experience, theirs are much worse than mine.  My eldest sister just found she could get treatment for her feet (nitroglycerin creme), we didn't know there was any treatment.  Is this disease progressive?  Is there something we should be doing for preventive measures?   Does it usually run in families? (My 2 sisters have it, but I don't think any of my 4 brothers do.  My dad has some terrible pain in his legs due to poor circulation, but I don't know if it's Raynaud's.  He's 81.) I don't even know what else to ask.  Thank you, once again.

[CCF Neuro[P] MD, RPS]

Dear Jan:

Raynauds is a manifestation of a collagen vascular disorder.  It results from spasm of the vessels in an extremity.  The spasm causes the flow of blood to stop for a very short time and as the blood returns to the area, color changes of pale to blue to red occur.  Along with the color change, pain or numbness can arise.  The spasms are associated with changes in weather or temperature.  Yes, there is a genetic component but it is not a simple one gene disease.

Sincerely,

CCF Nerro MD

[[e-mail]]

Last year I was diagnosed with lupus and was bedridden, fatigued to the point of dizziness, and totally unable to keep up with 2 small children.  I saw 2 to 3 doctors a week.  After beginning to take a unique antioxidant and other supplements, my life has turned around.  My doctors have told me to keep doing what I am doing and are really happy with my new health.  I have heard of people with Raynauds who have also had great responses to these same supplements.  You might want to look into such alternatives.

[jan to [e-mail]]

Would you mind telling me what the supplements that you take are? When I can take supplements, herbs, and such as opposed to medicines, I do.  Thanks.  :o)

[CCF Neuro[P] MD, RPS]

I hope you find the antioxidant your looking for.

CCF Neuro MD

[Thelma]

Jan,  I have dizziness and the wave sensation in my head that feels like it is going to knock me over.  I have described it to my neurologist that it feels like I am standing with my back to a beach and being knocked over from behind by a huge wave.  I also have muscle fatigue and weakness on my left side, and a painful burning sensation on my skin at times.  I have had several tests but not a conclusive diagnosis yet.  This has been going on for over 5 years and I have got some relief from medication.  If you want you can e-mail me at ***@****.  The lyme test I had (5 years ago) was negative. Sometimes when I have those waves in my head I can't talk or move my arms, but it is very brief.

[jan to Thelma]

Dear Thelma, Thanks for your response.  Your description is perfect, that is exactly what it feels like!  I don't experience the other symptoms you mention, however.  I don't think I am going to ask for another Lymes test because I read on one web page a description that I certainly don't fit.  It listed more severe symptoms, as I had suspected would be the case.  So... I am going to mention the "wave" to my neuro., even though I am really hoping he will discharge me (I hope I can talk him into it. I, almost did last time,over the phone, until I mentioned being dizzy).  Do you get other dizzy spells such as: real brief ones that do make you lose your balance slightly?  I am wondering if mine are connected?  I really can live with these things and hate testing, but I don't know if I really should mention them and to whom, my neuro. or cardio. Are you still testing?  What are tests are they doing?  If you get any answers let me know.  Good luck!

[Isn't it called, "Lyme Disease?"]

...what's all this talk of lemons and limes, anyway?

[to Isn't it called, "Lyme Disease?"]

Sorry you are so easily offended. ;o)  Knowing the disease was named after a town, I made it possessive.  To be sure I'll be on guard not to slip again.

[Thelma]

Dear Jan,  My symptoms started for the most part when I was pregnant with my daughter 6 Years ago.  We moved from a ranch style house to a 2 story house, where the kitchen was in the basement and the main living area upstairs.  My son was 2 years old at the time.  I was up and down those stairs about 40 times a day.  When I would get aboutone half to three quarters of the way up the stairs I would start to feel dizzy and by the time I reached the top step of 14 steps I would feel like I was going to faint. Then I would get to my bed and lie down until I wasn't so dizzy.  At the time the ob/gyn thought it was just normal pregnancy, but I wasn't like that with my first child and we had lived in a 2 story house with even steeper stairs then.  
After my daughter was born (July94) I didn't feel too bad for a few months.  And then the incredible weakness and fatigue came about Oct. My skin started itching and then burning horribly the first week of December.  At this point I started to be sent to internists, dermatologists and finally the neurologist whom I still continue to see. I have had MRI's of my head neck, and also an MRI of my leg while in motion.  Also EMG's, pulmonary function tests, 2 muscle biopsies, several EEG's, echocardiogram and exersize stress testing for the heart, 2 spinal taps.  I am having another MRI in March because of a seizure? that I had in Nov.  The neurologist didn't call it a seizure but several people that witnessed it at a community centre supper said it was definitely a grand mal type seizure.  The other main symptom that I find disabling is that sometimes when I have these waves my eyes quickly roll back in my head.  I can still hear what everyone is saying but I can't speak. I am currently taking prozac which definitely helps with the burning skin, and amantadine( which is an antiviral and anti-parkinson's drug).  The amantadine also helps relieve the burning, the waves, and also my left sided weakness.  I have been tested specifially for the following that I know of: mitochondrial myopathies, channelopathies, periodic paralysis, porphyria, myasthenia gravis, some muscle enzyme deficiencies. The only conclusive  type of thing they have said is that I have a muscle enzyme deficiency called myoadenylate deaminase deficiency which could cause the muscle fatigue, but not likely the rest of the symptoms. I have my own thoughts on the whole matter and I do believe that as time passes a diagnosis will be made.  My neurologist believes there is something wrong and has referred me to 3 other excellent neurologist for their opinions as well as sending my file to the mayo clinic in Rochester, Minn. and they had no further suggestions for testing. So I have to say that getting relief from medication has helped me the most, but it took over 3 years of mental agony and exhaustion to get to that point.  I also tried several alternative supplements but nothing seemed to help.  The waves can at times be the worst part of it and I am not sure what causes them, but I either seem to have them for about 2 weeks and then they are gone ornot nearly so bad for a few weeks.  Yesterday coming back from a nearby town, over 6 miles on a secondary highway I had over 60 of them, but today i am OK so far.  I don't know if this is of any help to you.  My EEG showed that my brain waves were 4 cycles/sec and the neurologist said that 6-8 cycles/sec was normal, I am not really sure what that means but I know I was having the waves during that eeg.  Bye for now ,  Thelma

[Thelma]

Jan, Sorry my note above is so long, this is three hours later and I am having the waves now.  Your question about losing balance - I feel like I am going to fall so I usually sit down and if possible (i.e. at home) go to bed.  The waves I am having now make me feel like my face is long.  My eyebrows go up, I think my eyes close and my mouth feels like it falls open.  My husband can tell it is happening and if he is around he tells me to go lie down, which I usually do but if I'm in the middle of doing something like making supper I try to finish it.  Sometimes I think that food and/or physical activity increases the waves. I also feel like there is a fog in my head. Is there anything that you notice that makes the waves worse?    Thelma

[jan to Thelma]

Wow! You are really going thru alot!  I have no room to complain about tests!  I rarely get the wave feeling and haven't been able to connect it with anything I do or eat.  The only time I had more than one was the 1st time.  It's funny because I was sitting down and each one actually made me sway forward, but I haven't lost my balance with them when I've been standing.  The dizzy spells that make me lose my balance are very brief and are more like an all out swirling in my head. I started atenolol for my heart conditions and I don't have the brain fog much any more and it has helped the fatigue, too.  For 5 straight days I felt completely well, no fog, no fatigue. I cried, I forgot what normal felt like, but...  Now my bad days are more the exception than the rule, but they are still with me.  I do have another type of syncope the dr.'s don't think is neurocardiogenic because I have no warning ( my neuro thought they were seizures,but...).  All of a sudden I realize my head is tilted completely back and it's weird, it seems to take a bit to pick it up and I realize I don't open my eyes until I do.  This all happens so quickly, I was driving one time and I don't think my hands left the wheel and I didn't switch lanes!  This hasn't happened for a year! I am sorry about all your suffering and do hope you get some answers soon.  I am going to the neuro. Feb. 1st, if I get any clues about the wave feeling I'll let you know. Please keep me posted about your situation. I wish you well.  Sincerely, Jan

[CCF Neuro[P] MD, RPS]

thanks for the comments to one another, I hope that it is helping.

CCF Neuro MD

[Rich Peterson]

I'm a 36 year old male diagnosed with Cardioneurogenic Syncope.  I was a VERY physically active soldier with no history of dizzieness, vision problem, or blackouts.  Then four years ago I was bitten four times by a blackwidow spider. The spider bite me on my left ear once and three times down my neck before I woke up with localized burning pain, abdominal muscle spasams, and lack of motor skills. A few weeks after getting out of the ICU, I began to have dizzy spells, and "tilting" to the left, along with EXTREME pain BEHIND my right eye, ringing ears, and extremities going numb.  Three weeks after the spider bite, I also received a whiplash from a skiing fall. My spells began to get worse, so my doctors did a tilt table test, which was POSITIVE - my heart stopped for 30-45 seconds.  They also did MRI, CAT scan, EEG, blood work, heart echo, holter monitor, 24hr urine,and stress test. My MRIs came back with a borderline Chari Malformation, while all the other tests came back negetive. My latest MRI came back with a brain cyst, so now I'm off to see a neuro-surgen for a second opinion.  One other note, prior to my spider attack and skiing accident, I was receiving immune theropy for allergies to bees and wasps (I was stung on my neck three times by a yellow jacket a few years prior) I'm still looking for a bug-proof turtle neck!!! :) My question is: Do you know of anyone who has been bitten multiple times to the neck and survived and if so, developed cardioneuroginic synope?
***@****

[CCF Neuro[P] MD, RPS]

Dear Rich Peterson:

Actually, no I haven't.  We have seen many people survive mutliple insect bites when they are severely allergic, to the point of intubation and mechanical ventillation and ICU stays.  None of these people ever developed syncope.  Some information, borderline Chiari I malformations usually are of no consequence.  Although there are exception, the vast majority suffer no ill affects from their Chiari malformations and many people do not know they have one and have no compliants.  I would be suprised if venom would cause cardiogenic syncope as this is dysregulation of feedback regulation of the autonomic nervous system.  

Sincerely,

CCF Neuor MD

[jan]

Dear Dr.,
I had an appt. with my neuro. yesterday and my sleep study was one of many things we talked about.  He said it didn't make any sense because they stated that when I was sleeping (I only slept 2 hrs.) Alphawaves were dominant.  Have you ever heard of such a thing?

Dear Thelma,
How are you feeling?  Any new developments?  I mentioned my wave feeling to the dr. and he said it could be from the neurocardiogenic syncope or perhaps from the "something else going on".  He and my cardio. feel that I have another condition they haven't been able to put their finger on.

[Thelma to Jan]

I read the above note yesterday about neurocardiogenic syncope and am going to try to find out more about that.  For the past week my left sided weakness has been the biggest problem.  It is hard to stand in one spot very long, my left leg just feels like it is going to collapse.  I am having an MRI on March 3 , it has been over 3 years since the last one.  My neurologist  deals mostly with MS and parkinson's patients although he doesn't seem to think either of them are what I have. He doesn't seem to think the dizzy spells are seizures but he's never seen me have one and my husband sure thinks they are seizures. Will let you know how I'm doing after the MRI.  It is at University Hospital in London, Ont.  which is close to where I live. The dizzy spells are not too bad at the moment.  Good luck with finding out if the alpha waves mean something.  Thanks for writing back.

[CCF Neuro[P] MD, RPS]

Dear Jan:

I am not sure what your asking?  In sleep, there are different stages and for each stage the eeg is distinctive.  Alpha waves are seen during awake states.  I hope that your awake eeg is alpha dominant.  

Sincerely,

CCF Neuro MD

[jan]

Dear Dr., When I was having the sleep study the tech. came in at about 4 am to tell me we would stop and reschedule another sleep study since I wasn't sleeping.  I was surprised, I told her, because I thought I had been dozing off and on.  She first mentioned the alpha waves then. After that, I finally fell asleep for 2 hrs. and reached REM, she said alpha waves were still present.  The neuro. told me on the report it said about fragmented sleep and alpha waves were dominant. From what he told me, he felt the report was saying I had alpha waves while sleeping and this is why he said it didn't make any sense.  I have read of a couple other people receiving this in their report, but never heard about the results.  So, I was wondering if it made any sense to you or is it another sleep study down the drain?  (At least the 2 hrs. showed them I didn't have apnea, my neuro. still thinks I may have narcolepsy).  Thank you for your time.

[CCF Neuro[P] MD, RPS]

Dear Jan:

I would think that the persistent alpha waves would mean that you really didn't go into stage I/II sleep.  If you have narcolepsy, then what happens is that you cycle fast and enter REM sleep very quickly.  This would be characteristic EEG pattern.  However, even without the sleep study, one should know or at least be very concerned of the diagnosis if the history shows daytime sleepiness, dreaming with the beginning of going to sleep, and maybe loss of control of some muscles when excited. If I remember, isn't there a sleepiness scale derived from a set of questions.  If so, this would also be a good indication. Alot of times we find that people have difficulty sleeping in the sleep study rooms.  Many have to come back for a second try.  Insurance companies do not like to pay for things unless test document the diagnosis.

Thank goodness there are new medications for narcolepsy. I hope you find your answer soon.

Sincerely,

CCF Neuro MD

[jan]

Dear Dr.
Thanks once again for your response.  This was my second sleep study already! (I hope I don't need another! To me it is torture.) I had trouble with being fatigued most of the time, but with the atenolol it has improved. I have had a couple of experiences with collapsing (but I thought now that would be contributed to the neurocardio. syncope).  Also, I do have hallucinations upon awakening, not often.  This is why he felt I may have it.  I feel as if I dream right upon falling asleep, but it could be just my thoughts going crazy as I drift off.  As far as the scale of sleepiness, I don't feel I qualify.  So, not having had any medical training and knowing very little, my diagnosis myself would be that I don't have narcolepsy.  :o)  Would you agree?

[CCF Neuro[P] MD, RPS]

Dear Jan:

You might have narcolepsy, but I would see a sleep specialist before coming to any diagnosis.

CCF Neuro MD

[jan]

Dear Dr.,
I was hoping you'd agree with me, that I don't have narcolepsy. ;o)  Presently, my neuro. isn't actively pursuing it.  Currently, he is concerned about my episodes of syncope w/o warning.  I haven't fainted, in that way, for a year. If it does happen, again, I am to call (and have a metabolic panel (basic) done).  I can't imagine it happening after a year.
Thank you for all your time and for the info. you shared with me. Have a nice day!

[CCF Neuro[P] MD, RPS]

Dear Jan:

Good luck.

CCF Neuro MD

[lynette]

My knees ache like mad after I have been sitting either on the floor or in a chair.  I am only 35 and thought I was in great condition!  I have a very stiff neck going on three weeks.  I am also very tired.  I live in Wisconsin and was wondering if anyone with Lyme Disease has any of these symptoms.  I don't remember a tick bite or rash.  I have been off and on antibiotics this witner for a chronic sinus infection.  Wouldn't this therapy have helped me if I did have Lymes Disease?