posted
I had this VERY badly before I started treatment and even during treatment. I believe it went away with my babesia treatment.. but Ive also treated bart so its hard to tell.
I completely understand what she is going through! Posts: 574 | From Out there somewhere | Registered: Jul 2010
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2roads
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Hey Jackie,
Hope you guys are doing better. Did yours go away with treatment and if so, what did you take? She's 5'9" and 145 pounds, so dosing should not be a problem. PM me if you can
I never thought she had Babs, so I'm either wrong, or it's Bart. Still could be lyme. OR maybe there is something neuro not working aside from TBI's.
I never understood when people listed this as a problem. I did do some lymenet searches.
I get it now. But what to do about it. Anything to help.
More thoughts-
Thanks, 2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
tell your daughter i completley understand if you
go through all my post this is my worst and almost
only symptom besides being dizzy ive been like this
for 2 years 7 months, its truly a nightmare, but
ive never treated either bcuz im scared it will
make it worse, she can write me if she needs
someone to talk to, i truly truly wish i could
say what to do
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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AuntyLynn
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Make an appointment with a "lyme literate" MD.
You can go to "finding a doctor" section and post the area where she/you live.
If she is dizzy, she may well have hypotension.
She should get to the school nurse and have her blood pressure checked.
Lyme can exhaust the adrenals, and cause seriously low blood pressure. Search "adrenal exhaustion" to find supplements (B Vitamins esp.) that might help.
Here's wishing you both success!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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quote:Originally posted by derk diggler: only symptom besides being dizzy ive been like this
for 2 years 7 months, its truly a nightmare, but
ive never treated either bcuz im scared it will
make it worse,
Why are you afraid that treatment might "make it worse?" Why aren't you MORE worried that NOT treating will definitely make it worse??!
As Dr. Spock would say: "This is illogical."
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
ya ya thanx thats why im here for constructive critisism, thanx auntylynn your right
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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AuntyLynn
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I hope you will please not take offense! But doing nothing??
Posts: 1432 | From New Jersey | Registered: Jan 2012
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2roads
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up for more thoughts.
Aunty Lynn, I gave her a vitamin, but she doesn't take it.
I think I will need an appt with Doc J depending on what he says.
Thanks for the thought of checking blood pressure.
Derk, I have to watch this closey, and if it goes down hill, I must do something. You should try to as well if you find you are getting worse.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
ill be honest i used to be wild and crazy party alot have lots of fun, and this crap scared me straight, im really at a loss for words the last 3 years have been hell for me, and auntylynn no offense taken at all, its what i need to hear, i just want to get off this acid trip im done!!!
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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AuntyLynn
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I think there are lots of very good Lyme Literate doctors in California, and hope that you have the means to go see one!
My Mom has neuro Lyme. It started with panic attacks, and the "experts" told her she should get counseling for her "anxiety." They gave her anti-depressants for years. Over time, the problems escalated, to obvious short-term memory loss. She cannot drive or cook anymore, because sometimes now, she cannot even recognize the difference between a shirt or a pair of pants.
It can cause folks to go deaf or blind, and it won't get better on its own.
My Mom loved to party too! She loved to travel, entertain, and dance - she used to take a cruise every year. Now she's doing Zumba classes in an Alzheimers ward.
Please - get some help!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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2roads
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Any other thoughts or remedies-
Thanks
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Keebler
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- Experiencing a dizzying array of symptoms is not the same as the official diagnosis of "depersonalization" - be very careful with that term. It can be a disaster of a diagnosis.
I would urge her - or anyone - to NOT call this depersonalization syndrome. It could absolutely destroy her chances for good medical treatment and even for academic advancement now &/or in the future if that is in her campus medical file.
She could be barred from certain fields of study.
Yes, lyme can cause all kinds of trouble but, that term is not one that is a helpful descriptor at all. It's a psychiatric term that, IMO, does not apply to those ill with lyme, even if they have psychiatric symptoms. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- explores the neurological, psychological and toxic ways that lyme and other tick-borne infections can affect emotions, thoughts and behavior - and psyche.
� by John D. Bleiweiss, M.D. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- It sounds like she may have been diagnosed with lyme and treated before for her to have a relationship with Dr. J. ??
I hope she can connect with his office then and get on track.
Is there a LL ND near her school who can help with support methods in the meantime? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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2roads
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Yes Keebler, she is under Doc J's care.
I will see what he says.
In the meantime, I will tell her not to diagnose herself and use these words in the health office at school, but just to describe how she feels.
Does that seem correct to you?
Thanks
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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posted
Hi again Yes mine went away with treatment. For babesia I took mepron with zithro and also bactrim. For bart Im taking rifampin with zithro and bactrim.
For me, the weird spacey out of body feeling went away with babesia treatment.
If she wants to talk you can pm me and ill send you my email address
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Is she on anti-anxiety meds by any chance? I had this horrible symptom when I was on klonopin. It was TERRIBLE!
I did have a weird spacey feeling when I got really sick, but being placed on klonopin made it 10x's worse. It has slowly been getting better with treatment. I am betterin the morning and it gets worse at night.
Posts: 618 | From NC | Registered: Oct 2009
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2roads
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Thanks Jackie. Interesting to know.
Jwall, she is not on any meds right now.
up formore thoughts.
Thank you both.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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AuntyLynn
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Keebler -
Thanks so much for posting "When to Suspect Lyme Disease" by John D. Bleiweiss, MD.
IF ANYONE HERE SUSPECTS NEUROLOGICAL LYME THEY SHOULD READ THIS 1994 DISSERTATION BY DR. BLEIWEISS, A NJ PHYSICIAN AND EARLY LYME PIONEER, WHO WAS HIMSELF INFECTED!
Dr. Bleiweiss' story is tragic, in that he was one of the earliest LLMDs to be victimized by an insurance company witch hunt for his aggressive treatment of LD. He lost his practice, his marriage, and eventually chose to take his own life.
Read this 1994 dissertation and know that he was light years ahead of the medical community.
May his memory be revered.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
My daughter has this and it is temporal lobe epilepsy otherwise known as complex partial seizures. (She was treated for Lyme, and the treatment made her psychotic due to the fact that tetracycline worsens lupus, which she really does have. We don't know for certain if she ever had Lyme. Unlike others in the family, she never tested clearly positive. We are aware of issues with testing but nevertheless, we are not certain either way.)
I would think about psychiatry ONLY after all other possibilities are completely exhausted, and very carefully when you do. It really does affect medical care in many ways. Your daughter could start getting diagnoses like "somatization" or, with an old-fashioned doc, "conversion." That means, basically, that there is nothing medically wrong and it is being caused by her mind.
Temporal lobe epilepsy cannot usually be seen on a regular EEG. It is a long road to get to any certainty on this one. Our daughter had a seizure disorder diagnosis already when the type of thing your daughter is experiencing became apparent.
Before antidepressants, I would ask for Lamictal, an anticonvulsant that also gives a lift. It's done my daughter a world of good.
Not everything is Lyme. It is always good to consider it though, so I am just offering up an alternative. These types of epilepsy can crop up around this age.
It is conceivable that inflammation from an infection or, if relevant, autoimmunity stoked by infection, are behind my daughter's problems, and they could be for your child too. Still, anticonvulsants do help some w/these symptoms.
Posts: 108 | From US | Registered: Apr 2012
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2roads
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Epilepsy.......now I'm really freaking out.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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Mom, For a little over a year now I have felt a little disconnected from the things around me. Recently, over the past few months, I have began to feel disconnected from everything. People, the physical things around me, my sence of self, my thaughts and my emotions. I feel like I live in a constant dream. I have began to be very scared as I have lost my feeling of who I am and all of the people around me. I looked up what could be going on and I found a disorder called depersonalization disorder. After looking up the symptoms I have found they are exactly how I feel. I don't want to feel this way anymore and feel so hollow. Along with all of the symptoms I have looked up treatment and I haven't found much. While there has been some ideas I don't know what could be done to help me. I want to go to the health services and figure out what I can do. My fear though is maybe this is somehow related to lyme and that I am somehow mentally effected by it now. I just want it to stop and break free from this haze I feel like I am in. I don't know how I can find out if it is related to Lyme or if it is just something that is mentally wrong with me. I am sending a link to Wikipedia to give you more information. All of the things it describes in the way of symptoms is how I feel. I kept hoping all of these feelings would go away but they have only increased and I feel more out of touch then ever. I need this to stop I can't keep living with how this feelings and how much it scares me. I don't know what to do. http://en.m.wikipedia.org/wiki/Depersonalization_disorder#section_2
Doe this sound like epilepsy?????????
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Pocono Lyme
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I had years of experiencing this. It is absolutely horrible. Nothing looked "real" to me nor felt real. Totally disconnected from everything.
Sort of like being awakened from a deep sleep and trying to function in that state of mind.
For me, this was babesia. A much lesser form of this seemed to be bartonella. Babesia was a heavy dose of depersonalization and bartonella was a much lighter dose of "spacey feelings"
I did Mepron/Zith early in treatment which didn't touch that symptom for me. When I did Coartem I got quite a bit of relief which made me realize the culprit was babs..
It didn't last unfortunately but continued treatment with different regimens helped significantly.
I hope she can get rid of this quickly as it is horrifying and debilitating.
I never had an EEG so I don't know if epilepsy played a part in my case although one of my LLMDs had mentioned it at one point. I think that was because of my episodes of amnesia though.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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2roads
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Thanks Pocono Lyme.
What therapy do you think ultimately helped? For how long? Is it gone?
Thanks,
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Pocono Lyme
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2roads,
I believe the coartem helped a lot. I did do IV doxy and Clindamycin which helped some more.
I'm not sure if it's completely gone. My immune system was tanked and I believe that has been a big part of my not getting well.
I've been getting IVIG since January 2011 and though that is a slow process, for me I think that has been the key.
If my poor immune system had been addressed years back, I think the meds. would have made me well.
Hope this helps.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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2roads
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Thanks Pocono Lyme.
Glad you are feeling better.
Yes, it has helped.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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Thanks Pocono Lyme.
Glad you are feeling better.
Yes, it has helped.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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lyme in Putnam
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Its a really sad scary place especially if you're younger. Just try to assure her that its common and it does go. I've been frantic with this, going to places you were once familliar with and loved and now so lost. Its common, and scary. I could write to her if you need to and I can try, I know I've lived this for 3 years and Im older. Good thoughts, God bless. PM me anytime,I live it.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Sammi
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2roads, I am sorry your daughter is going through this. She articulated very well how she feels. I think this can be a symptom of tick-borne diseases.
How long was she treated? When did she stop treatment? It could be that she still needs treatment.
Please tell her this can be a symptom of Lyme and co-infections and that many people get this. If it is from this, it can get better with proper treatment.
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Andie333
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I'm so sorry your daughter is going through this. I've had periods of experiencing something similar to what she described.
For me, it started when I began treating Bart and Babesia.
I think being on Levoquin definitely helped. It's a horrible feeling, and if she wants to talk, she can feel free to send me a pm.
Posts: 2549 | From never never land | Registered: May 2005
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Andie333
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One more thing: I would encourage your daughter to contact her LLMD about this. Let him direct her to any subsequent assessment and/or treatment.
Like Keebler, I'm afraid a Lyme-related symptom could really be misinterpreted. Thanks to a post she had written before, I was cautious about approaching a mental health professional.
In retrospect, I'm glad I was, since I now believe it's related to these awful diseases.
Mostly, I'm just sorry this is happening to her. Of all the symptoms I've had to deal with over the course of my treatment, this is the worst. Her letter to you had to be heartbreaking for you to read.
Posts: 2549 | From never never land | Registered: May 2005
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Keebler
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- First term away in college? I remember just how stressful that can be?
Now, so much more to consider but at the top was my total inability to be disciplined regarding the need for sleep and naps. A few things to consider:
SLEEP - and establishing good sleep hygiene.
Diet (gluten-free can be hard to do)
Adrenal support is hopefully on board to compensate for:
Sensory overload (activity; sound; light late at night; chemicals; scents; new fabric treatments; chemical smell from markers and highlighters, etc.
Can she get the QUIET she needs? When she needs it?
Organizing stuff & study schedule
Relaxation time - a routine and place for that -
Posts: 48021 | From Tree House | Registered: Jul 2007
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2roads
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Thanks each and everyone of you.
I just emailed her.
I was tempted to have her read all your comments, but I don't want her to freak out thinking she is in TBI infection hell again.
I gave her the major points you all gave me. Thank you.
She's mad at me right now. A dinner at a restaurant blew up in her leaving and me bringing all the food home. It was close to campus so she walked back to her dorm.
I think her immune system has shut down. It needs strengthening. I came bearing fish pills which I was not able to give when she ran out. I doubt she's take them anyway.
I just wish I know which infection it was. I never thought she had Babs. It seemed to start when she felt a little depression and went on Rifampin and Zithromax. Taking that 4 months on and off like the sun (something I begged her not to do with Rifampin) it may have made things worse. It would not be the drug of choice now.
Wouldn't want her on Levaquin. I think she's too young for that anyway....18. I don't know-Doxy, linamycin, coartem, IVIG. Any thoughts? IV Rocephin. Whatever it is, it has to get to the brain right?
Yes, I am devastated. First my son, now my daughter.
How much more will be taken from me.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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AuntyLynn
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Sounds like she is angry at the world because she knows she is suffering a relapse - and taking it out on you.
Maybe she needs some time to come to grips with that, and will turn to you for help when her anger calms down, and she is ready to redirect it towards the fight to survive.
Brain fog generally indicates a neurological Lyme infection, so she will need something that can cross the blood/brain barrier.
But sounds like she will not cooperate before she hits "rock bottom" and realizes that it is not your fault that she is sick - and that she is, really, the only one who can take control of her health. (Re: her refusal to take a vitamin!)
It's tough being a teen-ager... and I can imagine how she has so looked forward to college and some independence, only to find that she is seriously ill again. I'd be angry too! But you can't stay mad forever, and hopefully that anger will get re-directed into a stubborn resolve to BEAT this bug!
If she finds she can't function well enough to study, perhaps she should withdraw for a semester, take a medical leave, and get her infection under better control.
But I would let her stay in her cave until she can sort it out for herself, and is finally ready to come out and fight ... Be ready to help her when she does.
Giving her the respect to make her own decisions right now, might be the best medicine you could offer.
My heart goes out to you both.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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2roads
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Thanks Aunty Lynn,
I just did that.
I just emailed her letting her make her own decisions, and if the outcome wasn't what she had wanted then I would be there for her.
God spoke that thought to me.
I told her I loved her, and signed out.
Hugs to you-
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AuntyLynn
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