posted
When your neuro stuff kicks in, besides tingley extremeties, what do you feel?
It is my fear that I'm either heading towards psychosis or seizures or something else that's dark and scarey.
My head feels stuffed with cotton batting, my forehead and eye area feels swollen, I can't think straight and feel confused without thinking, I'm slightly dizzy/off-kilter, and I have flash-flood depressive feelings with sudden tears or anger.
Is my brain being eaten?
I was off meds for 9 days and things grew worse gradually. Now that I'm building up on doxy, things are getting worse [up to 200 mg. working slowly towards 400 mg].
I'm waiting for a lot of results on various tests with new LLMD. Babs tests were positive last year and never truly treated. He wants to treat the babesia, possibly with malerone.
I'm scared that the malerone will send me over the edge. I'm working on possibly starting an antidepressant, but the psychopharmacologist is waiting on the LLMD's test results as well as SPECT and neuropsych results.
In the meantime, I feel crazy and scared.
What are people's experiences with weird brain swelling feelings? How does one cope? This is an ugly, lonely place I'm stuck in....
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Before being put on antibx, and while herxing, I have most of your neuro symptoms.
I also have difficulty speaking, swallowing pills, finding words, etc.
I am on malarone 1000mg a day along with zith.
I understand that doxy lowers the effectiveness of malarone.
May want to check with your LLMD on that.
Also, my LLMD said it was very unlikely to herx on malarone as it is mostly inert ingredients.
I did herx on zith though. I started the malarone on it's own, worked up to four doses a day without any herx. Then I added the zithromax.
It is normal to have your symptoms get worse when you herx. I herxed for 27 days when I started doxy.
Hang in there. Hope this helps some.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I know exactly how you feel and there are times when I have felt that way. I was on antidepresents for a while but they only worked for a few months. It was the antibiotics that helped me greatly. Give it time and give yourself a break. Tell others around you that you are emotionally unstable and to be nice to you. But you should see a doctor if your mood does not improve.
Good luck
Merrie
-------------------- Love, Merrie Believe in the power of your spirit..for it will carry you through the darkest hours of your life Posts: 261 | From minnesota | Registered: Sep 2004
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Most got better with high dose doxy over three months.
Others have come and gone and come back.
Six months Rocephin and I was feelin fine, but some symptoms came back. My llmd says coinfection and lyme hiding out in the suspect tissues...sinuses, tonsils, appendix (I don't have). Hence the surgeries.
I start Babs WA1 treatment soon too, once I have my tonsils removed. I'm hoping the surgeries, babs treatment and another round of lyme treatment will make 07 the year I kick it!
Been thinking about Vitamin C supplements to speed things up. and thinking hard about herbs too.
Trying Art but can't get the doses up as my heart palpitates. Up to 200 mg a day without major backlash...reluctant to add the lunchtime dose.
Headache is back, but kind of different. But the confusion and slurred speech is not (that was the scary stuff, which makes me think its the babs more than lyme relapse.
Doxy saved my life summer of 2005. Stay out of the sun though!!
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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Geneal: thanks for the warning about doxy lowering effectiveness of malerone... I'll ask my LLMD next week. My new tests will be coming in, so I'm not sure which med will be prescribed.
I also have the swallowing/word-finding problem. I was on Zithromax for 4 months and herxed hard too! Your words make me feel so much less alone in my reactions!
believe: thanks for the "emotional instability warning" idea -- some warnings come out as snarls or tears. Trying to mask it for my little ones is hard. I've never had much success with antidepressants, but it seems too much right now. Interesting that yours only worked for a few months. I'm glad that the abx have been helping you.
hope: thanks for the reassurance that it will get better! And...I'm hugging you right back!
Yorktown: Hey! I lost my appendix (ruptured) 6 months before Lyme treatment began. Ya think the lyme took the appendix? I hope recent testing will show which type of Babs is crawling around in me. I am looking forward to the relief of knowing that there is an abx targeting it! You know, I can get a doxy sunburn just by reading under a lamp!
Best to all of you. Your words help to calm me.
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Wiseforit,
I, myself have two young children. One five and one three. I have found myself yelling and losing my temper a lot, but this is getting better.
I always apologize, but I wonder how it makes them feel.
I don't take anti-depressants as I can't function around my kids at all.
It is a hard place to be...emotionally, physically and mentally.
I know that we will all survive this and maybe one day when my children are older, I can try to explain.
From one Mom to another.....hang in there. Even though I still get easily aggravated, overall, I feel better, think clearer and am able to play with my children.
I hope that is what they remember about Mom getting sick.
My prayers and positive thoughts to you and your family.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You know, it can't hurt, wiser, to see a Lyme friendly therapist if you can afford it!!!
When my Lyme was not-too-bad-but-bad (when it got really bad it was too much of a trial to go anymore, too much physical effort) my mother paid for me to go and basically repeat, "It hurts it hurts it hurts!" for 50 minutes once a week. It was good.
It helped!!!!!!! And to tell the therapist all the fears- that helped too. I was afraid I would not see my daughter grow up and that helped to talk with her about that... And I got to train her about Lyme so now we have a Lyme friendly therapist locally!!!!!!!!
Take care, Best wishes, Sarah p.s. You too Geneal!!! I can remember feeling SO BAD about my mothering when I was bedridden- she had been better by then= we actually got TELEVISION and until then we had been no TV- only books - and I would just let my daughter watch TV all day long those horrible bedridden months- we couldn't afford in home help for me or child- and she would SIT on me so I would know where she was because I was asleep 22 hours a day- and whenever she got UP it was a struggle to wake up and care for her at all- and at the end I did so by voice because I COULD NOT EVEN GET UP and then when my then-husband came home he was in charge full time-
But then I GOT BETTER- and before that and since then I have been, I can say, a GREAT Mom, and I have two great kids now- and my older daughter- every teacher she has had has commented on one thing- how UNSELFISH she is, how she is always thinking of ohters, of other kids, and helps them with their work when she finishes hers first, and I can't help but think that was because of our time of trial- and the TV didn't hurt- she scored #1 at her school in STAR testing- tests at the college level and is only 9-
ANYWAYS, my mothering ability was NIL at that point but WE MADE IT THROUGH and I think she learned some good emotional things from it - empathy- compassion- at a very young age-
You both sounds like good Moms!! If you weren't you wouldn't feel bad about thes things!!!
Bestest wishes again, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi wiswerforit
It stincks to have neuro-lyme problems. This & fatigue are my worst symptoms...it is scary very scary.
I felt like my brain was under water & I couldn't think straight and would get confused very easily. My memory scared me too. Couldn't understand conversations & couldn't find the right words either... The whole neuro aspect scares the bagemies out of me.
Treatment has helped me the most. And the treatment for babs helped me some in the neuro department.
herxing makes my neuro problems-mind fog ect..worse by far & the emotional rollar coster too- I couldn't think sraight no way.
If you are in treatment your brain is not being eaten -it may be swelling due to the die off...and this is just temporary. I got much worse in treatment in my neuro symptoms before I got better.
When I am herxing I can tell by just looking at my face in the mirrow. My eyes are red & druppie & I look I am drunk, I don't drink but feel drunk. But not in a good way. I often wonder who is that face.I don't recognize it...herxing for me is hell.
It can take me a very long time to clear a brain herx ater stopping the treatment. I think it may take the brain longer to get rid of the toxins.
But over time & many years of treatment my neuro symptoms are much better. And I am content with the progress I have made so far. It wasn't easy but it was worth it to me in the end.
Hang in there=it does get better over time. Just keep reminding your self this is only temporay.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sorry I forgot to mention anything you can do in the detox department I found very helpful both while herxing with lyme & also with the babs too.
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I remember deciding that I should try to do the daily crossword puzzle, to keep my fuzzy brain functioning: the first time I sat down to do it I actually became dizzy and had to stop as I had intensde head pressure from the trying-to-think experience!
This got better, slowly, although the crossword puzzles are still a good way to measure how my word retrieval problem is doing from day to day or week to week.
I could not take Malarone - had some weird & scary psychological reactions to that: do keep a diary to show to your LLMD if you think this may be happening to you. I cannot take Meporon or Malarone. Using doxy & tinda to get to the brain now.
I am also a single mom, one ADHD daughter and one autistic son. Ten years ago, when I was barely functioning & they were in pre-school and kindegarten I taught them to watch TV because I needed time alone to hide my illness from them. Thank goodness the school bus stopped right ouside our door: I put them on the bus then collapsed for the day until they came home. They have turned out fine despite me.
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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