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neurological lymes, and SSRIs?

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Posted 7/29/2011 6:03 PM (GMT 0)
hi all,
first off, hope everyone is having a good week! im hoping that i am one step closer to a diagnosis- as i will be contacting a LLMD and having blood tested by IGeneX. thanks to all those who gave me advice :)

as for my questions today, do many of you experience neurological lymes? more symptoms that seem neurological in nature than anything else? all of my symptoms began with tingling and pulsating feeling in my right temple on my face- since then i had a swollen cheek, ear pain/clicking and ringing/fading, fullness/pressure and pains in my head, pressure that causes weird sense of smell in nose (not a bad smell, just a noticeable change for a few seconds) and weird sensations in my head (moving sensations, like a misfired nerve or something- my doctor helped me describe them as "brain disconnects"). i also feel an internal tremor/vibration throughout my body- not noticeable when looking at my hands and legs but i feel it. does anyone else experience these frightening sensations in their head and body? is this typical of neurological lymes? i had an MRI back in april (before some of these symptoms) that showed a couple small lesions on my brain- however the doctor didnt seem to concerned. is there any way to tell if these lesions were caused by lymes versus something else?

and finally, ive also noticed some anxiety with my symptoms. in my opinion, who wouldnt feel anxious when they experience so many symptoms and feel awful because they don't have a diagnosis? my primary care physician has not been very supportive in this process and believes that because my symptoms are so widespread- its all in my head and anxiety! maybe it was my mistake to tell her i felt a little bit anxious given how scared i am as a 21 year old experiencing these feelings. anyways, i made it very clear to her i was willing to try whatever it takes to feel better. so i saw a psychiatrist this week who asked me some questions and believes that i dont have any "diagnosable" psychiatric disorder such as depression, bipolar, OCD etc but that he understands that my frustration and illness may cause me some anxiety. so he gave me the choice of waiting to figure out what more doctors have to say, or trying out celexa (citalopram), an SSRI, to see if that helps with some of my symptoms. i just started today and feel like a zombie! have any of you tried out SSRIs with lymes? and/or take it with antibiotic treatment? ive heard that SSRIs have many uses and i was wondering if anyone experienced relief from this type of medication.
Posted 7/29/2011 6:27 PM (GMT 0)
Hi teeners!

Great that you are getting closer to getting treatment.

Yes, I have had all the neurological symptoms that you mentioned. They have become almost completely eradicated by my treatment. Although these symptoms are frightening and unnerving, they are reversible in the case of Lyme disease.

I do know that both Lyme and MS produce lesions on the brain. Lyme can both mimic and trigger MS so I really don't know how they would differentiate the cause of the lesions.

I have not taken SSRI's -- have you tried any herbal or homeopathic remedies for your anxiety. It might be preferable to feeling like a zombie.

Again, so glad you are on your way to getting some treatment!
Posted 7/30/2011 12:13 AM (GMT 0)
what you described could definitely be Lyme. the brain disconnect is more commonly called brain zaps. and yes i had very bad brain zaps along with all the other crazy symptoms.

listen to your doctors. but more importantly... listen to yourself. if these brain zaps and other symptoms just suddenly came out of nowhere... then theres an underlying cause... possibly Lyme. and taking SSRIs will only mask the problem or may not even help at all.

in fact... a common side effect of withdrawing from SSRIs is more brain zaps! no lie... look it up. personally i wouldnt be taking those until all other physical causes have been ruled out. doctors tried to tell me i was depressed for awhile. but it was really Lyme all along!!

you're on the right path getting yourself tested. good luck.
Posted 7/30/2011 2:18 PM (GMT 0)
thanks for all of the helpful responses!

achieving grace- you have experienced moments of trouble swallowing and weird sensations in your head? i was thinking this may be indicative of some other neurological illness, i didnt know it was as common in lymes. and as for trying alternative methods for the anxiety i feel, yes i have attempted yoga, mangosteen juice, acupuncture and cognitive behavioral therapy in addition to the psychiatrist. both therapists believed i had an underlying illness in addition to some anxiety.are there any other methods you would suggest?

jess- its so nice to hear from someone experiencing all of this at such a young age like myself! ive been so concerned that ive got some other condition or issue that the docs havent found- and its been especially hard living for 6 months with progressing symptoms and no diagnosis! you too experienced a lot of neurological symptoms? i know what you mean about the "anxiety"- mine too is not the typical heart racing, but more of a fidgety type. when im uncomfortable (which is most of the time), im biting my fingernail, playing with my hair, or something else to take my mind off of the other symptoms.

lymester and miss cranberry- normally, i hate taking medications! the reason why i decided to try out the ssri is because ive been going months (with no medication) and suffering! so my decision was based on the hope that i can find a little relief now, while still in the process of a diagnosis. i do not plan on going on this medication long term, so im thinking the withdrawl shouldnt be an issue for me, right? or taking these drugs for a month or so could still cause the withdrawl? and miss cranberry, i have tried talk therapy. but i really dont have much underlying stress right now other than not feeling well, and this is something that caused my sessions to end (bc my therapist didnt believe she needed to see me more). ive never had problems with anxiety before until now, and its still not the typical type.

mysterylyme- im curious, did you have "brain zaps" before going on SSRIs or any other medications? where you just feel sudden weird sensations for a few seconds in your head that leave you scared and confused? i also sometimes have weird pressures/change in smell with them? i was wondering if this can be some type of seizure? if i get them while eating they cause me to have some trouble swallowing sometimes. i started getting them in april, rarely, and now they are more common- something that is scaring me more!

thanks for all the help!
Posted 7/30/2011 5:07 PM (GMT 0)
i've never taken an SSRI in my life... my brain zaps were all Lyme induced. i'm not sure what exactly causes them... but my personal theory is some of your brain cells are firing electric signals that other brain cells normally receive and use. but for some reason the receiver cells aren't receiving... and this causes that electric signal to suddenly end up dispersing somewhere else and then ZAP like a tiny lightning bolt inside your head. not fun.
Posted 7/30/2011 6:43 PM (GMT 0)
Wow, I have that strange electric shock feeling up around the temple on the right side of my head too. I first noticed it a few months before going to the Doctor and really had no idea what it was?! I've since figured that it could be Lyme related (along with all of the other crazy symptoms and sensations), and now I know it is related for sure! As the saying goes, "There's comfort in numbers", so I feel better knowing that this sensation wasn't peculiar to me alone or that it was a whole other problem entirely to be concerned about.

I'm so glad I found this Lyme forum because I've learned so much from you all and your shared experiences!! Thanks!
Posted 7/30/2011 9:31 PM (GMT 0)
I think we should be cautious about negativity regarding antidepressants, or antianxiety pills. I know that many of us wouldn't feel so darn depressed/anxious if it wasn't for the bugs in us, but they don't seem to be going away very quickly. Psychotropic meds are a tool, no different than the many other things we pop into us (caffeine, herbs, alcohol, etc.) Have they been tested to see what happens after 15 years of using them? No, but neither have our antibiotics, milk thistle, samento, or whatever.

Personally I use an herb for depression (St. John's wort, which is almost the equivalent of an SSRI in its functioning) and a Big Pharma pill for sleep (lorazepam). Am I happy (pardon the pun) to take them? Heck no! Do they help me get through this misery? Heck yes.

So if someone on this forum is suffering, there is nothing wrong with them giving an SSRI a shot. If after 2 months they don't feel better, they can stop...which is more or less exactly how many of us have had to approach our Lyme meds.

Are SSRIs wildly overprescribed in our culture? Sure. There is actually very little evidence that they are effective for minor or moderate depression, though for severe depression they have proven effective. The evidence is much stronger for trying cognitive therapy or meditation (mindfulness-based stress reduction), but for lots of reasons people can't/won't try those techniques.

While no one knows how most any med interacts with the cocktails we are on, generally speaking SSRIs are very safe meds. So if someone is stuck in the snow and their car needs a push, we wouldn't tell them, "No, your car should be able to drive on its own." We'd push them out. SSRIs are one possible push for our stuckness.

When I'm through all this and my body and mind can function and focus, I am going to do yoga and return to a job I love and volunteer and snowboard, and get off my Mommy's Little Helpers. Until then, I need them, and well, that's that. We Lymies have internalized enough negativity, no need to beat ourselves up for using whatever help is available.
Posted 8/1/2011 1:53 PM (GMT 0)
teeners - yup, been there. I have had Lyme for at least 35 years but did not know till Jun 10th of THIS YEAR. Well, back through the years, docs would tell me it was all in my head too - I had either major depressive disorder, panic disorder, generalized anxiety disorder or whatever. BUT MY PROBLEM WAS LYME THAT WAS NEVER TESTED FOR OR DIAGNOSED!

My lyme flare episodes happened roughly every 5 years - I'd be "normal" for those years then fall into a funk for 6-18 months followed by another 5-year or so state of normalcy. The 'funks' I now know were caused by Lyme reactivated at times of a major life event (stressor). So docs would confuse my funk with one of those psychiatric "disorders". They even convinced me that I was nuts! I took probably 8-10 different antidepressants at various times over 25 years - none ever worked. I thought Prozac worked once but when I look back, I was already coming out of the episode so it was coincidence. What works is rebalancing the body and mind through diet, exercise, rest, etc. SSRIs, especially, for me cause more problems than anything. And to me, even if they worked, they are balancing a brain that is being affected by Lyme and once the Lyme clears, that brain will be unbalanced again!

Now, the anti-anxieties DID work for me. This is because of what you eluded to in your post - I was anxious because of a direct affect of the Lyme - that's typical and probably not too treatable with the anxiety meds, it should resolve with the Lyme treatment. But, I was also anxious because I was adding other layers of anxiety on top (one was I did not know what was wrong with me, plus the randomness of the symptoms caused me to get anxiety attccks and the like). The anti anixeties, I am convinced, work with this artificial anxiety portion and helped with it. BUT, I am not one to want/need/like meds. So I was very careful to take only small amounts and only when in dire straits. I have Xanax now ready at the helm - it is a VERY small dose - 0.25mg tabs which I take 1 or 2 times a day. Docs can prescribed up to 6mg of this stuff as a dosage so I am at a 1/24th level.

Bottom line - every one must decide for themselves - SSRIs I will never take again, EVER. Anti-anxieties, I will/do but only as really needed and in small doses. That's what works for me.
Posted 8/2/2011 3:58 AM (GMT 0)
 

Teeners,

I agree with Lymester, but I also suggest you get tested for mercury toxicity.  A hair test is more accurate than a blood test.  Most people with significant depression, anxiety, and bi-polar issues have mercury toxicity, and will experience a significant improvement in their symptoms once the mercury is detoxed.  If you have silver-colored fillings, you really should get them replaced with white ones before detoxing.  I experienced extreme improvement in mental/emotional symptoms after detoxing from mercury.

 

Posted 8/2/2011 11:47 AM (GMT 0)
Lyme14 - I have thought about the amalgam filling issue many times in the past but never acted on it. I only have three left but one is exposed (since late this winter) so I am wondering about mecury toxicity. It's back in my mouth and behind my tooth so is not noticable to people around me so I delayed getting it fixed (don't particularly LIKE the dentist office!! LOL!). Turns out we have a dentist right here in town that now focuses on amalgam removal and detox. I have an appt with him on Thursday. It will probably be expensive to get done (insurance doesn't cover much) but I need to get that tooth fixed at a minimum. The other two amalgams are in my lower wisdoms and even one of those has a small fissure, so I am thinking I will get them removed as well. Do you have more info on detoxing the metals? I am taking chlorella now anyway for regular detox and I hear it's good for the metals as well (and maybe cilantro?),
Posted 8/2/2011 1:03 PM (GMT 0)
lyme14- i was tested for mercury toxicity and some other heavy metals through a 24 hour urine sample. i have no mercury fillings in my mouth, though my concern was that i could have got it from eating so much fish. there was no mercury in my urine. however, there was a substantial amount of arsenic- my doctor said you can get this from fish too, and given mine was still in the normal range, she wasn't concerned.

a random question for all experiencing the neuro symptoms- are you guys able to yawn?? well, does it relieve pressure when you yawn? ive noticed recently that ive been yawning more, but i dont feel like i can yawn big because i feel like there is too much pressure in my head- so my yawns never feel refreshing. this may sound weird, but its slightly bothersome. sometimes the short yawns almost make me nauseous/feel like i need to gag. i dont know if this is related to head pressure or if my throat is tighter. just thought id ask if anyone has this weirdness going on! thanks!!
Posted 8/4/2011 6:28 AM (GMT 0)
 

Teeners,

There's no "safe" level of arsenic--it's a poison.  You should look into getting it out of your body.  I had arsenic, too, but detoxed from it.  Mercury is in fish and vaccines, but it's good if you don't have that causing problems.

 

Posted 8/8/2011 1:43 AM (GMT 0)
Hi,

my son (20) has only neurological lyme since 12/09...so bad that he doesn't speak except to reply "its good" no matter the question. He sees a very good psych doctor who has prescribed many different meds but nothing seems to work. I also don't like giving him these meds since he can't tell us how he feels. I wouldn't mind if they worked and we could actually talk to him.

Anyone every known of someone this bad? did they get better. Seeing LLMD, won't ever give up.

his Mom

Posted 8/8/2011 2:59 AM (GMT 0)
hi frikandfrak,
im so sorry to hear about your sons condition! im a newbie to lymes and have yet to even be diagnosed so i don't know a whole lot about it. however, i know recovery is a long process. was your son hit with all of his neurological symptoms suddenly in 2009 or did he have a gradual onset of symptoms? and was it caught quickly by the doctors? you say he has been on many different meds but none that work. is he on antibiotics? ive heard of brain lesions going away with treatment, did your son have an MRI?
stay strong and dont give up! keep fighting!!
Posted 8/8/2011 4:41 AM (GMT 0)
 

Yazzer--both chlorella and cilantro are good for detoxing from mercury, however you shouldn't take them until you have all your amalgams removed.  Otherwise, you can pull some of the mercury into the body.  I had to pay out of pocket to have my 4 fillings replaces 7 years ago.  It's not cheap!  There are also chelations, clay baths, and other metal detox supplements you can get on after the amalgams are removed.  Clay baths are strong, but in my opinion, most effective, but anything that's a strong detox can cause seizures in sensitive individuals.  This is why it's best to start out slowly, and to have a health practotioner supervise the detox.  Clay baths will eat away at ceramic fillings, and should only be done with plastic composites.  There are many different methids of chelation that can be done with ceramic fillings.

 

Posted 8/8/2011 4:44 AM (GMT 0)
 

Frikandfrak,

I don't know anyone with bad neurological Lyme, but I wonder if some of the herbs that help with seizures might help with the neurological symptoms in Lyme, too?  Do you have any herbalists by you that treat Autistics? 

 

Posted 8/8/2011 2:24 PM (GMT 0)
Hi,

Yes, when we found out what was wrong in Dec. 2009, his tests came back all 10 bands positive and RMSF...he basically got worse for the next 6-9 months, during which time he was on mino, tindamax, zitho, IV ricophen, biciliian shots, then after six months saw new LLMD and was put on IV doxy till just a couple of months ago...now on rifampin, bactrim and started biciliian shots again. My feeling is he was so much infected but we didn't know it...his symptoms (just acting strange) came on very suddenly. We took him to the doc right away and this is what his regular doc found. Then took him immediately to LLMD.
Anyway...he now is kind of at a plateau...no better but no worse.
Doc thinks maybe not detoxing enough but we're not sure what to do about that. Doc has him on sydetox drops for a long time but I just give him alot of water (when he'll drink it)
Would like to give him a supplement but afraid because he can't/won't tell us how he feels
sorry to ramble....its just been a long road so far, very frustrating.
I think even the doc is frustrated.
Posted 8/8/2011 3:22 PM (GMT 0)
frikfrak, is he taking B12 supplements? its good for the nervous system and cognitive function. also, ive been trying out turmeric, which i believe has very few side effects to my knowledge. its an anti-inflammatory and antimicrobial.
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