posted
Has anyone else had the feeling that since encountering the psychiatric effects of Lyme, that their perspective is way off?
I was told last night that I seem like I'll say things mot people wouldn't dare say, like I don't communicate normally. Also, that my perspective regarding relationships and thinking of other people are way off. I feel like I'm drunk half the time, like I can't think things "through".
Anyone else have this? ANYONE GET OVER IT?
I've been taking Rocephin hoping that it will do something. Also started 250mg Levoquin in case its Bart doing it. Nothing so far.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes it is quite common. NO you are not crazy.... I slept thru most of my first yr. of treatment...
Just take it one day at a time.
Lyme gives many of us new found freedom to say what we feel and mean what we say...LOL
I once has a professor tell me-"If your going to be a bear, be a grizzly".
I had to become that grizzly to fight this stupid disease no one warned me about....
Be strong...When your mind clears it is like a new day.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I've been on orals for about 2 years, and IV for one month. Isn't this long enough to expect some sort of response?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
You're not crazy but, if you are � we�re all crazy--trust me!!!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I think its time you tried some of the drugs that work for a change. Barring cancers you should be better.
These results suggest that the propagation of PrP(Sc) molecules may not depend on a single stereotypic mechanism, but that normal PrP(C)/PrP(Sc) interaction through polybasic domains may be required to generate prion infectivity. http://www.ncbi.nlm.nih.gov/pubmed/21779169 2011 Jul In other words organisms now known to freely give of their DNA may still be able to be killed in ex. gram neg/gram pos. fashing even though it is in a gram neg. bacteria.
Sweden knows it nailing jello PCR did not reveal any Borrelia antigen in CSF. The diagnosis and treatment of possible but not confirmed neuroborreliosis is a clinical challenge. The clinical response to treatment may be the best option in these cases. http://www.ncbi.nlm.nih.gov/pubmed/21785674 2011 Jun
They are getting all their ducks in a row to treat all the syndromes...
http://www.ncbi.nlm.nih.gov/pubmed/21753890 2011;4:97-113. Epub 2011 May 3. Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
So it looks like barring all cancers--if you kill all the bacteria that have now freely swapped their genes--you can get well.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Pinelady - can you please dumb your point down for me?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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James1979
Unregistered
posted
I bet you she's related to Marnie.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
No I'm just a Lymie looking for something to fix me.
Marnie is educated I am not.
The antibiotics Dr. Sapi tested are not just for gram neg. bugs. So===if it works that has to mean that the prion like protein in borrelia ARE swapping domains with other organisms they come in contact with...
So since we can't see the genetics easily you must just kill them all including parasites.
As for the virus', I don't think they could survive with an immune system that was working properly in the first place. So stem cells may be another option to kick it...
Unfortunetly they won't give us enough here ot do the job and I don't have 45 grand it takes..
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Pinelady - you know some of the earlier links you sent don't work?
What are the 'drugs that work' that you're referring to?
EVEN BETTER - HAS ANYONE FELT THIS WAY THEN FELT LIKE THEMSELVES AGAIN?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
I never feel like myself anymore. Some days i wake clear as a bell only to have the fog roll in on my brain. I become very lethargic in my thinking and my actions. Thought come into my head only to completely disappear somewhere between point A and point B. I try to retrace my steps to find the missing thought usually only to find it drifted away on the breeze. An hour later i realize that thought was to turn off the tea i have brewwing on the stove. Its very scary at times to feel so out of control and seperated from both mind and body. I am not suicidal but some days i wish i would die so it will all be over. Mind you i havent been diagnosed or treated with lyme but am pursuing it due to the fact i have all the symptoms. I just cant find anyone to help and there are no Ilads or lyme literate drs in my area. We are gonna have a benifit to raise funds in hopes of getting me to a Ilads dr out of state. I hope this all works out i am so tired of the run around and straight up disrespect of the medical field in general.
Posts: 8 | From Mo | Registered: Jul 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my personality has totally changed.
i'm impatient, prone to anger, want to be left alone, you name it.
my husband says i "exaggerate" everything...which infuriates me even more. what does he know???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I just visited with my Lyme doc. She said if she were to get lyme disease and co-infections, she wouldn't self treat because your perspective can get so skewed. She would seek out help from a LLMD or LLND herself!
I wanted to bump up my game to "hit things harder" She said HEY! You are doing so much already with herbs and self therapies. And it's true. I work 30-33 hours a week, come home and attempt dinner and chores and other projects and even kind of have a social life when I choose to.
I have gone through all of these feelings listed here, and recently I finally decided that it was enough! I'm reclaiming my feelings, working through some emotional issues, and viewing myself as already healthy. I am not delusional, I know I will find myself in a funky/crazy mood again, but they are getting less and less after 9 months of slowly treating.
I know it can seem impossible to change your mind set and feelings when you are in a mental/emotional lull (and sometimes abyss). Keep searching your soul for the answers and the help you need.
You are NOT crazy only dealing with a very icky illness. And you're getting better every day.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Let's face it, lyme is in our brains. It only makes sense that spirochetes in some manner (perhaps die off) could affect our brains. My brain seems to work better from exercise (burrascano/weights). Maybe it's because spirochetes hate oxygen (kills them). I work out with weights every 72 hrs for one hour. I've noticed I'm reasoning better now.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Pinelady
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Member # 18524
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
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If the proteins are not only swapping genes as they transverse the neurons but also those genes abilities it would make sense why Syphilis was never cureable...It is able to swap genes.
So we not only have to kill the bugs we have to get rid of their genes. Which is really scarey stuff, cos that could mean they really had no idea what was in a vaccine if the truth never really stood up===meaning it was never tested to see what all was in them....
Like the Retrovirus' they now warn us about...Jerks...
They are looking for a way to take out the "n" terminal of genes...I think they have done enough thank you very much, but NO Thanks...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
So Pinelady... given this information. Do you have the sense of self that you had before? Are you "better"? Is there hope? Do I need to do something in addition to Rocephin?
I've had retrovirus treatment, btw, since I have XMRV. It was horrible, the meds messed with me and my head.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
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posted
thehause coconut oil helped me with my virus'. It healed lesions very fast so I started eating it too. If very viral it will cause a big herx so start low and slow....
Yes I am a lot better...And I love my mind back...But Flagyl and others still put a herx on me. I think this is where IV would work the best, and drugs of choice are supposed to be coming out soon with the new research....
The problem most of us have is the bugs and their genes that get left out of the treatments...
We can't forget the parasites that will not be killed by antibiotics and just waiting to give them all back to you....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I'm doing Rocephin and I've had a bit of other stuff.
What are the upcoming drugs of choice that you're referring to?
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i feel a bit clearer than normal and after reading the conclusion to sapis study it sounds like what my llmd told me 3 yrs ago
the bugs can figure and resist abx
the bugs have a harder time resisting herbs
so use herbs
buhner or zhang...but its a little complicatted...you need the book and you need to work at it
you can call me and i can explain more...i see how you asked the same question so many times
i have been where you are now
i'll pm you my number
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
thehause-when we talked i was unable to reread this whole thread and therefore did not answer your question
you can pm me or email me but tell me the tx you have had so far
if i am remembering it right-it sounds like your llmd is on the right track. i would give them a full 3 yrs before you give up on them.
my comment about abx no working cuz bugs figure out how to resist them is after many many yrs of abx. you are really still in the beginning of tx.
after your llmd systematically hits all the bugs , that is when you will switch to herbs. i do believe most ppl need to really zap the bugs with abx first. after awhile tho...many llmds and lymies find that herbs work better to keep the bug load down.
the other things to look into now...while you are following your llmds plan are: detox, yeast, parasites, metals, ---theres more stuff. but those things can be done at the same time you are txing and doing what your llmd says
reading virginia sheer and robert bransfield writings will help you understand you are not crazy.
also-cure unknown helped me feel i wasn't crazy. or a wimp. or what ever ppl around me were saying.
when lyme is caught really early and you get appropriate tx soon it is possible to actually cure it in a reasonable short time. it also depends on co infections and strains and your health and environmental and genetic history,
i think knowing you had it as long as you had it w/o tx and your response you need to understand you will have to fight longer and harder than some...but you can get better. i really think you can from what i know about you. but you have to be persistant and patient and try to stay positive.
i can explain more about the herbs...thats why i wanted you to call me. but i think you still need more abx for awhile-to cover all the bases.
keep in touch
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
What herbs are you recommending? I've tried a few... and am still taking garlic fairly regularly.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my husband tells me all the time i have no sympathy and that i am a hard person.
well ya'll know why. but i have no time or patience for people who won't even take a few dang minutes to understand what lyme patients go through.
i just tell it like it is and if they don't like it, tough.....right tutu??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thank you Pinelady for your thoughts in this thread. It helps me confirm the track I've decided to take.
I doubt very seriously that I will ever do abx again. If and when "they" come out with the truth and the "cure", maybe?
Somehow I don't think that abx will be in the mix....but never say never.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6455 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
if i was doing herbs i would start with buhner because there is a lot of support and he is brilliant
zhang also wrote a book
aside from that you could search for other protocols
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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