CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I am going thru a tough time. Have been in tx 2 years, bartonella and Lyme. Not really babesia, just some artemesinin and other herbs here and there. My symptoms are almost 100% neuro and have turned neuropsychiatric....severe depression, anxiety, suicidal thoughts, racing mind, depersonalization/derealization, obsessive. Brain fog and confusion. I also have sore back and feet, and crazy twitching. I feel like the woman in this article:
We don't hear much about this presentation of the illness on the board. It is embarrassing which is probably why.
I have an LL-psych and an LLMD who I think has run out of ideas. He has not been willing to put me on IV. Psych meds only help so much. I am terrified that there is no hope for me and that suicide is the only real option. My days are hell, constantly thinking about death and funerals. With all this talk about bartonella not being curable and thinking that if this is what I have in my brain I'm doomed.
Could this be Lyme and babesia causing all these problems after all? I can't bear to think of it being bartonella and thus no hope for me.
Please help w/encouragement if you can. Sorry so long.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
CD57,
I am so very sorry you are struggling so badly. Please do not give up hope since quite often when we feel like we have hit the brick wall, it's because we need to change our treatment protocol.
If you feel your current LLMD is stuck, would it be possible to get a new one to get a fresh new perspective on this?
I do know that my LLMD is treating me for babesia even though my first testings came back negative and it does tend to shake things up a bit in the treatment.
I know it's easy to get discouraged when we are feeling so beat down and no end in site, but I know that I ended up having to go the IV route when I started falling backwards and we all need to keep fighting.
You mentioned having a LL psych. That's a huge step there since I'm sure you could talk to him/her about what you are feeling and atleast you won't be looked at like you have three heads.
Please do not give up. You have been such a good contribution here and we NEED you. Seriously, I think it's time to switch up the meds. Please discuss this option with your LLMD and if they aren't ressponsive, look for one that will explore your particular case from new eyes.
Stick with us and keep us posted on how you are. WE CARE!!!!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
CD-57,
Nothing to be embarased about. It is what it is. I will tell you that I have been down this lonely road with you several times.
I've always popped back. I know that it (psych issues) are caused by the illness. I never had any of these symptoms until becoming ill.
So the good part is that I think that the depression, anxiety, ocd, can resolve on its own w/o regard to treatment for bart etc......I don't believe that you are doomed to be like this forever.
I did/do have to work very hard to keep these things at bay...but it's posible. And a little help when things are bad (meds) never hurt.
As Cathy has said above, you are an asset to this site and I am sure loved by many. Keep on keping on.
Pm me anytime if you want to vent or just talk. Believe me, I've ben at the lowest of lows.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
CD57,
Oh, I think I know all too well what you are going through. I felt like I was living in hell in 1996-1998. I was so incredibly depressed, for no reason. Doc's couldn't come up with anything but Chronic fatigue Syndrome and I didn't dare tell ANYONE what my thought process was like!!!
I thought I must surely be demon possessed, as I couldn't even speak with someone without picturing them in their coffin. Felt like I knew 'the secret' to life. That life was only about emotion, if you are happy life is fun, but once you understand the 'secret' that everyone is just going to die and there is no real point to life...then life is over. I am a Christian and at that time in my life, I figured hell couldn't be any worse. I figured heaven couldn't be any better. I just wanted to die and have no afterlife.
It was THAT bad! I was living with my parents (I was in highschool) and I would crawl downstairs sometimes due to the fatigue, use the bathroom and just cry for hours and hours. Afterward I would just sit, almost catatonic. I had nothing left. Nothing.
My husband (who went to the same school) remembers me just crying in the hallways in highscool. It's funny because I was voted best smile (at the beginning of the year). And I did try to pretend and smile later on. I lost a lot of friends because they couldn't understand and who can blame them? You cannot begin to comprehend the horror of life like that unless you've had to endure it!
I am positive now that I had swelling in my brain due to the Lyme, I'm sure my SPECT scan would have been great fun to a neuro to check out (I never had one b/c the dr told me it was CFS and I would be like this forever).
I know that neurotransmitters can be royally screwed up with this infection, I know mine were.
I had been Miss Optimist, I NEVER understood why ANYONE would want to take their own life. Til Lyme happened upon me.
I did a lot of natural stuff and raw diet and eventually the hell went away, still had some physical stuff, but not nearly as bad.
It was pure torture to live that way and even today I cannot believe I didn't take my own life.
I hope that I never get back to that place, but am hopeful if I do, at least I know that their is something physical causing the darkness and hopelessness.
I feel for you SOOOO much. No one can understand it if they haven't been through it. It's just horrible.
I would suggest that you find another LLMD. One who will give you IV abx. You should NOT have to live like this, no one should.
Please take care, and yes after all I went through, I am SO thankful I am alive. Even though at the time, I thought I would not go a day without thinking of funerals and death. I still feel like I am dying sometimes, but not the dark thoughts I used to have. Driving by cemetaries was really rough on me, gave me the most awful feeling.
It CAN pass!! So glad you have a LLPysch, that's great!
I have been there more times than I can count, and have felt the way you do.
It has been a long, long road.
You are not alone.
I was really struggling over a year ago. What had been working, just wasn't doing it anymore. Then we added to my tx, and gradually things started to improve again.
The tx we added not only tx Bart, but mycoplasma (which I tested very high for a few years back).
In my case, I think that it is the mycoplasma.
Take care.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You are definetly not alone. I am going through this kind of stuff right now. Some of it may be from Lyme, but some of it is just from simply being chronically ill. I mean who wouldn't feel this way at least sometimes when dealing with chronic illness.
Maybe a change in protocol is needed. And sometimes the meds we are on can cause these problems also.
Please don't feel alone or embarrased. This is way more common than you think. And don't feel that you cannot get better. You can and you will!
I don't beleive that Bart cannot be treated. Thats hogwash. I know someone who just had Bart, not from a tick bite but from a cat bite, and he was completely cured of it. I'm sure the cat got it from a tick though.
I also have a lot of neuro issues. I think mostly from Lyme!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Oh thank God for some of the people on this board. I just feel so completely abandoned and alone. I don't know what to do. I'm not on anything right now except Bicillin shots once/week.
What I obsess about is this (and this is the illness, I KNOW it because I never had obsessive thought before): MAYBE I AM A NON RESPONDER. You rarely hear about those people but they have to be out there. Maybe their Lyme just doens't respond at all. I have been thru 2 years of intensive treatment and have made huge gains, only to slide back to square one. This may point to babesia, a possible gatekeeper infection. I have heard/read that if you have this and it's not treated you will not get well. But what does that mean for bartonella?
Suthern girl thank you. It doesn't seem likely that bart won't go away. It can't be as sophisticated as Bb so why not??
Posts: 3528 | From US | Registered: Apr 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
CD57, I am sure that you are feeling this way because your meds are so low!!! Why are you only on Bicillin once per week? Please find another LLMD if you can. You don't deserve to live like this.
I know that in April 2000 after I had my appendectomy I was on IV abx and then orals for a few weeks. I remember feeling SOOOO happy for no reason! I was in college and I was talking to my mom and feeling like the world was mine and telling her that I was SO excited about life.
Course it lasted a few weeks maybe, and while I wasn't in a serious depression at the time, I know now it was the ABX that was supressing the Lyme.
Seriously, please consider a new LLMD. Someone who can get you where you need to be!!
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
CD57,
You are right. I too have been hearing so much lately about Babesia being the gate keeper to lyme and the other co-infections.
Perhaps the treatment isn't sticking since babesia has slipped through the cracks and that needs to be addressed.
Obviously I'm not a doctor, nor do I know your case, but I know my LLMD is treating my babs very aggressively.
I know that if you could start to feel improvement again, it would also help with your mood. None of us like thinking we have hit the brick wall.
Hang in there and see if your LLMD will treat with more than just the bicillin and give you some meds for babs. Just a thought. Good luck. We are here for you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I am on a waiting list for a new LLMD but it's not for several months.
My doc has mentioned starting me off on low dose malarone plus Zit plus a couple of herbal things. Should this be ok or do you have to hit babesia hard due to resistance issues?
Posts: 3528 | From US | Registered: Apr 2007
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Ocean
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Member # 3496
posted
CD57, I'm glad you are on a waiting list. I'm not sure about resistance issues, I have not treated Babs yet.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
What do the other 50% say?
I think you are right re the iv.
I am devastated to hear that re bartonella. Why?
Posts: 3528 | From US | Registered: Apr 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
CD57, I am so sorry that you are going thru this. Hang in there.
My daughter has attempted 18 times, all serious and most of them would have worked except for God and luck.
She was at her worst as we treated with IV meds. Since then I have read more about detoxing and have gotten a ton of info from here from Gigi on detoxing.
My daughter has had some genetic testing and she is in the 1/4 of the population that either does not detox or doesn't do so very well.
With an eye on that and also discovering that she was also carrying the so called dreaded genes for Mold, we did tons of rehab to portions of our house and then had her at a clinic for brain damaged patients.
The clinic discovered that she was not on psych meds that were getting to the problem. That discovered, within 2 days, we had some improvement.
I am constantly forcing water and chlorella.
I am no dr but I can assure you that we would be devastated without her, and I would suspect that your family and friends would be the same.
There is some hope..I am not sure there is permanent cure yet but remission is out there.
Good luck. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hey CD57!
I'm not feeling well today at all, so I wasn't able to read all the posts on here, but I still wanted to respond, at least briefly.
You will be okay!
Are you seeing a good psychiatrist? Are you seeing a LL-psychologist or psychiatrist?
I have had some very very bad psych presentations over the course of my illness. I saw Dr. Fallon in NY at Columbia, and even he seemed to be surprised at how bad of shape I was in from a psychiatric standpoint when I came into his office.
I asked him how bad my OCD was exactly.
He seemed like he didn't know what to say, so I said, "Like, mild...? moderate.....???"
And he said, "Well, it's not mild!" (sort of in a sarcastic but caring way, trying to say he didn't want to label it as severe but he thought it was pretty severe)
I am only recounting this story to give you a sense of how bad I was. After that my mom sought out the best psychiatrist in our state for me, because it was clear I needed help. The psychiatrist I am currently seeing is very into research, and very knowledgable about psychopharmacology....meaning he is good with drugs and their interactions. He is a true scientific thinker.
I think with this illness, it is easy for the brain to get in bad shape. I think if you are not seeing a really good psychiatrist, someone who can prescribe you medications to help rebalance your brain, you need to be.
If your psychiatrist isn't helping you out enough, you might want to think about switching.
You don't have to emphasize the Lyme with your psychiatrist, because it really isn't that crucial that they understand WHY what's going on is going on, in my opinion. You really just need to find the best person you can find to get you thinking clearly, and not having these disruptive thoughts that really just are too much of a burden to carry along with Lyme.
Living with that much of a burden on your brain is exhausting. When you aren't yourself psychologically, it is difficult to do the things you need to to do get better from Lyme and co's.
I think that should be step #1, getting on some good psych drugs (Lamictal worked well for me, as I have mentioned...but everyone's different, that's why a good doc is key) I think you won't be able to make good treatment decisions for your Lyme and co's if you are unstable psychologically.
Once you take away the psych burden, getting better will become easier. It's amazing how everything in life becomes easier when you aren't suffering psychologically. If you aren't in a stable place during treatment, find someone who will get you there.
I hope I didn't repeat myself too much....I'm too tired right now to edit this.
All I can say is that doing those things really helped me, and I'm happy to say that now I am actually off all psych drugs. I was so bad at first that they told me I might have to be on them for life, but now I'm not on any. My psychiatrist is amazed at the turn-around I have made.
But I got my life together, and treating for Lyme and co's helped relieve the burden on my brain. Honestly, I'm not sure which infection was causing all the things I was going through......but I can tell you, IT GOT BETTER. First you have to take psych drugs to alleviate the symptoms, then you have to treat the infections.
Some people are against psych drugs, but I think we need every crutch we can get to get through this.
I know you are worried you are never going to get better, but you will. I can't tell you which antibiotics will get rid of your symptoms permanently, but they will. You need to try different things. I think you are smart to not just assume it's bart, because at this point, we don't know what it is, really.
So please don't give up hope!!!!!! You may be surprised which abx end up helping you...it's just a matter of experimentation and not giving up!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
My dear CD57,
I am so sorry to hear that you are not feeling well. I went through the hell that you describe, and got better only through long-term high dose antibiotics.
Hang in there! All this will pass eventually with good treatment. Great that you are treating babesia.
My lyme was very intensely neurological. It took over two years and with babs treatment too for me to get better.
You need the new llmd. I realize how difficult that can be, financially and energywise. But you can get better.
Surprisingly, babesia and lyme tx together removed much of my neurological symptoms. The combination of high dose ceftin, with zithromax, mepron and plaquenil, worked wonders for me, but that followed two years of high dose bicillin, amoxy, plaquenil, biaxin, etc.
I do not know your treatment protocol, but I hope that you can get a good doctor and hang in there!
Posts: 2557 | From home | Registered: Aug 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thank you all so much. I have read your posts over and over and over trying to hang on to the positivity. It sounds as though, even though this part of the illness is not much talked about, it is very real.
Hoosier....I talked to my psych about Lamictal just now and we are going to try it. She agreed that I can't get better with all of the horrendousness of the thoughts in my brain.
Vermont, I was glad to see that babs/Lyme treatment lifted much of your neuro symptoms. I wonder/hope that it will be that way for me.
i do appreciate this site.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I, too, know the feeling! But looking back, I am sure glad I always managed to dig around and find that flickering flame of hope. The more pain, the more it tends to flicker. But I grabbed onto every little thing I could and made the most of it. Never give up-- it's a long road back, with Lyme etc.! The meds affect your spirit too- so that is part of the fight as well. I would put on Beethoven symphony #6, 7,8, or 9 - these were good for keeping the rage directed at the spirochetes in my blood!
I hope the big turnaround is starting for you right about now!
Sincerely, DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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adamm
Unregistered
posted
Absolutely NO NEED to be embarrassed. These symptoms are so common with this disease, and I get them on a pretty much monthly basis as part of my flare. None of us asked for this, and we have no reason to feel ashamed about it. I'm curious, though, as to why your LLMD would have you put on psych drugs, which are arguably more toxic than abx and probably won't address the root cause of the problem, than Rocephin, though. Is there anywhere you could go for a second opinion?
As for bart being incurable--I know two who dealt with it, one with Lyme and one without, and both recovered fully. I really don't see any reason to assume that it'll cause lifelong problems if you have it.
Well, good luck, and I hope things start looking up for you!
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Adam, thanks! I needed to hear that about bart b/c I simply can't believe it can't be gotten rid of. Stubborn yes. Intractable no.
I think I have had bart for a long time, got it as a kid. Not problematic until infected with Lyme. Does anyone else feel this way?
Maybe this is all lyme and babs. I'm just tired of trying to figure this out really.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
This is good info, OTM. I think that a lot of us do not get our levels up with orals and that creates problems. For example, I was on Rifampin for a long time and only found out pretty far in that it takes down levels of other drugs (and psych meds too) rxed with it. It also affects SHBG.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Sex hormone binding globulin.
Posts: 3528 | From US | Registered: Apr 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
CD..
You've helped so many people over the years. So sorry you are now in the dumps.
I have some suggestions but truth is I am too worn down to write and do a back and forth.
If you want to email me your number and a good time to call (noon to midnight), I'd be happy to try to help.
We are going to get you out of this nasty phase. I know so. I've also been there... have seen many others there..... and have found relief even in the darkest moments.
If you chose not to email... I do hope you find help and feel better soon.
posted
cd, i had my "crystal ball" out there but couldn't come up with this ....
Sex hormone binding globulin.
glad you are getting more replies and tincup's offer to talk to you on the phone
hang in there my friend as i said in my pm to you. you're NOT walking alone here....
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Glad to hear you are gonna try something new (the Lamictal).
It may not help much with true OCD symptoms like "checking," etc, but it did help me moreso with obsessive thought patterns, being emotionally volitaile and impossible to be around, being extremely argumenative, irritability, neediness, and poor decision-making (inability to see the consequences of my actions). In other words, I was just sort of a crazy basket case.
So that gives you an idea of the symptoms it helped me with personally.
It is supposed to be a "mood stabalizer" or be for "treatment resistant depression." It does have mild antidepressant effects. I hope it is enough to combat the suicidal or dark thoughts. If it isn't, you may need to try something else....I think Paxil and Zoloft are supposed to work well in Lymies.
Also, with the Lamictal, in my experience, the name brand is better than the generic, so if you can get your doc to order the name brand, might as well. But the generic might work too for you....everyone is so different.
Please keep us posted!
Everything you're going through is normal and it'll get better!!!!!! Stay positive!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by Vermont_Lymie: My dear CD57,I am so sorry to hear that you are not feeling well. I went through the hell that you describe, and got better only through long-term high dose antibiotics. But you can get better.
I totally agree with this as well. I know the detox stuff has to be addressed but I think so much emphasis is based on this it confuses the issue more, it did with me. when all of these fany tests were not around and everyone treated aggresively even without detox they got better.
In fact I was convinced my symptoms were a detox problem yet alls it was really was chronic herx as even off AB's and with the correct detox I felt TERRIBLE Psyche wise.
So again I truly believe aggresive AB's done in the right combo with drug holidays monitored is the way to go - of course guided by an expert LLMD
I truly believe now after speaking to other patients even if you have these detox issues or genetic issues its tougher herx's but you still must treat hard and aggressively.
So again hold on to that hope that you have the appoitment with your new LLMD and perhaps you may get a cancellation.
you MUST HANG IN THERE
Posts: 1172 | From UK | Registered: Jan 2007
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Thank you all. Rianna, I really needed to hear that I am treatable. I had a horrible night with my latest obsession being.....I AM A NON RESPONDER.
What if that's true?? We never hear about this but these people have got to be out there. It's never made sense to me how an infection couldn't respond to antibiotics, unless it's the wrong antibiotic. But.....what if you try everything and continue to decline? In some ways I am much worse than when I started treatment. My body is better, but my brain seems to be much worse. It's like the infection has moved from my body into my brain. I start a med, respond, and then seem to stop responding.
My LLMD is really smart and I don't think would ever say that to me. But he is puzzled by my case. That alone scares me.
I'm so sorry to obsess on here guys. I guess you can see how ill I really am.
Posts: 3528 | From US | Registered: Apr 2007
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
CD57
Please come over to lymefriends and in to the private chat room so we can talk
its 4.30pm here so I will see if you come over
XX Rianna
Posts: 1172 | From UK | Registered: Jan 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I wake up every day with a pit in my stomach. Then the depersonalization sets in. Nothing seems real. The OCD, relentless researching. The bouts of crying and anxiety coming up through the floor. The jacked up CNS that is buzzing and tremoring, constantly. It is unspeakable. It's not cyclical, it's constant. I have been in treatment 2 yrs and this illness seems to have moved entirely into my brain.
I don't think I am going to make it to my new LLMD appt in May. This is not a herx because I'm not on anything except herbals (well, they are pretty powerful). In one day I go from this being babesia, to Lyme, to bartonella, to BLO, to something else entirely, like toxo. I am tired of self-diagnosing but can't stop. Does anyone else go through this?
Posts: 3528 | From US | Registered: Apr 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi CD-57,
I know the 'pit in the stomach feeling' so well. It haunted me for several years at first. When I'd 'only' been sick for six months, I remember it was March and I thought, "I cannot handle one more cloudy day, physically and mentally it will kill me". It just made it worse, course my life was you know what when it was sunny too!
Weird thing is, I think the co's can come and go in severity. For me...my anxiety had been really low the past couple of months. Granted, I'm still too afraid to drive anywhere by myself, but a few months ago, I was white knuckling it in the passengers seat. Heck I couldn't handle watching TV!
Thursday morning I awoke to high anxiety. Nope, not menstral cycle related, that was last week.
I couldn't figure it out. Then it dawned on me...although I had not gotten the cyclic sore legs since Nov 29, it could be it. I would get very high anxiety with it.
Bingo!
Friday morning, I work up and being tired and not even thinking about the possible return of the sore legs...I stood up and OUCH!
I hobbled around all day, Saturday was even worse, but anxiety was better. Today? Legs feel like nothing even happened, but I was having extreme panicky feelings at home and at the grocery store. Also swallowing has been iffy at times which is one symptom that I REALLY hate.
Gosh...it sucks! I was dreading the end of the month before due to it and I guess I'll have to again.
My mind was going in so many directions, it's not even funny. I had managed to gain 10 lbs back, but now if the anxiety starts up, goodbye healthy weight. I can hardly even sit down sometimes with this crap.
Anyhow, just wanted you to know that yes I think the infections can pop in and out, for whatever reasons. I was starting to feel that I was almost in the clear for anxiety, too!
Do you mean that you cannot drive to the appointment in May, or do you feel that you are so sick you will die? Have you called the LLMD to see if you can take a cancellation spot if one appears? I did that with mine and while I haven't had a call yet, she said she would add me to the list. So I don't think it's something that doctor's offices do routinely.
Take care and I'm sorry you are feeling so bad. It may be the herbals creating die off too, you never know.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
OCean, what is the coinfection that is cycling--is it babesia? You seem pretty tapped into it being something cyclical.
I am on a cancellation list. However the LLMDs office says it rarely gets those.
Posts: 3528 | From US | Registered: Apr 2007
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Ocean
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Member # 3496
posted
Hi,
Glad you are on a list, but that stinks that it is so rare. although I can understand why, after you wait for months and months, I wouldn't dare cancel for fear it would take even longer next time!
I wish I knew what was causing this for me! I was tested for Babs, Bart and that E one (can't remember how to spell it) and they were all neg with Igenex. I was told I had Babesia with electrodermal testing in 2007.
I am going to see if my new LLMD will treat me based on symptoms or at least try a different lab for the co's.
Hang in there, there are SO many times that I told myself I wouldn't make it another month, and I'm still here. Just feels so bad when you are in the theros of it!
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
You have been through some terrible times too, I just read your blog. isn't it horrendous?
Do you have a good LLMD?
Posts: 3528 | From US | Registered: Apr 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi, Yes, this disease causes more suffering than I ever imagined. I remember about 6 months into it and realizing that I just wasn't going to wake up one day and this nightmare was going to be over and I just thought...how can I go through the rest of my life like this?
I was definitely suicidal for awhile, due to probably swelling in the brain.
I have an LLMD that several LN members have recommended. Two so far have stated that they owe him their lives, so I've got a REALLY good feeling about him. Plus there was only a 6 week wait to see him and he has you do all of your labs (except Igenex, he does that at the office) before you come in, which I think is smart, so he can see what's going on and make sure your liver/kidneys can handle the abx.
When I was first on amoxicillin, before I knew there were psych sx for Lyme or what herxing was, I was totally psycho.
I was in almost constant rage, wanting to hurt others and myself. I had no impulse control. Did dangerous things. Said very hurtful things. Almost ruined my LTR. We had no idea what was going on.
I started planning how to kill myself, researching the best way. I didn't tell anyone bec I didn't want them to try to stop me.
Everything seemed futile, hopeless.
Mood swings, anxiety, hallucinations (auditory), suspicious and paranoid, thought I couldn't trust anyone.
I didn't tell my Drs my psych sx, bec I was having so much trouble getting anyone to believe I had Lyme, was already being "yellow wall-papered" -- thought this would prove to them I was nuts.
I have to stop now bec my arms hurt, but I will say more, but my eventual point is. . . .
It didn't stay that bad all the time.
It has continued to be a struggle, but there are periods of light.
Knowing that it's symptoms and NOT really "you," can help.
When it was worst, I really thought nobody would care if I killed myself. That I was just a problem anyway, a burden.
"They'll get over it," I thought. "In the end, they'll be relieved."
Eventually I found out how WRONG that was. They told me they wld NEVER get over it. They wd NEVER forgive me.
The people on this list seem to love you a lot. They wd not get over ur death.
You WILL get thru.
I am pulling for you.
peace out, s
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
This disease can do alot of devastation. I think my sensory system has been effected over the years never letting me know i have had.
I had extreme evilness, pacing, ocd, depression, crying. I too planned my funeral, was going to write my obituary. Thought God hated me. Thought my mom who is deceased never loved me.
Lost my ability to recall in my mind what my daughter and parents looked liked and needed to look at pictures. Then the mental crap of crying so hard cuz I had to look at a pictures.
I had to stop looking for a while as I was literally non functional with crying. She would just call from college and I would listen to her voice for a few seconds before I would start crying.
This was at a height with babs and lyme treatment. I had to come off of all medicines.
Up'd lexapro and now on orals and doing much better with the psy/mental issues or can control the thoughts.
I have the depersonalization which is horrible as derealization plus a detachment from myself 24/7, which is very weird.
No body image, no feedback of my body 24/7.
Know that you are a wonderful person with caring thoughts of others.
Everyone has a special something that make them feel good (if you cant feel then think) about themselves. If it is hard for you to find something ask someone near and dear to you. They will have a big list.
I had to write notes to myself for a long time about what I did good that day or that I am a nice person. I would use the OCD and repeat those phrases throughout the day.
Kindly, Barb
Posts: 167 | From USA | Registered: Jul 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Wow this is a lot of great support. It's amazing how many people have had issues with this. Something that is more rarely discussed.
It does help to remember it's not "you".
Has anyone ever figured out what illness is responsible for this? Have most LLMDs seen this at some point?
Posts: 3528 | From US | Registered: Apr 2007
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bettyg
Unregistered
posted
cd/others,
this may answer that or may not.... from my newbie package link info...
Distinct Pattern of Cognitive Impairment Noted in Study of Lyme Patients .....MUST READ!! EXPLAINS EVERYTHING !!
written by Marian Rissenberg PhD & Susan Chambers MD, The Lyme Times, Vol. 20, Jan-Mar 1998, pp. 29-32
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