posted
Hello All: I have been getting treated for late stage lymes disease now for about three months. I am on 2grams of Rocephin IV, 500M of Zithromax orally and also 100m of Amantadide daily. My lymes is fully neurologically involved and when I was at my lowest I was basically an unemotional feelingless zombie. I have seen much improvement since the IV but still have much more to go. I am amazed at the loss of emotions and feelings that I have experienced. It is almost immpossible to bond with someone anymore due to the fact that I just don't "FEEL" anything. I don't take pleasure in anything any more. I hope my feelings will come back because this is making my life hell. I am just completely disconnected from life. I'm isolated inside my head and just can't break into the world. Because of the effects the lyme has on my nerves, It has become immpossible to be intimate with someone. This is also causing a great deal of stress for me. I want to know if there is anyone who has experienced these horrible symptoms and if they subside once there has been a suitable amount of treatment.
Posts: 26 | From NJ | Registered: Sep 2004
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docdave130
Unregistered
posted
lyme depression is one of the most devasting symptoms of neurologic lyme.i went thru this for 4.5 years,even with a pscychiatrist and therapist. the only treatment to survive the overwelming depression is psyc treatment with antidepressants to get you thru this period. i am still on zoloft after 5 yearsand have been thru the gamit of antidepressants. it takes a skilled llpscych md that knows the devastaion of neurologic lyme. there are almost no psyciin the country that are prepared for the unslought of lyme disease, since lyme disease is usually treated as depression. heavy neurologic depression is common in neuro lyme and the lyme must be under semi-control before the devasting depression goes away. it does get better. i was mis diagnosised for 6 years prior to treatment and finally after 5 years of treatmentfinally care about things again. it is very important you seek a therapist that you can talk to to get you thru you time of need.usually your spouse or partner are the worst help because they do not believe that you are sick with a disease and the disease caused depression. i am presently at the point that i get fits of lyme rage that i can't control and don't know what sets it off. this is very difficult on my wife and she sometimes thinks i'm crazy. you may email me if you would like to talk or more info [email protected]
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posted
Because every one is different, not every thing works the same for each person. For me antidepressants caused my symptoms of anxiety and detachment to become worse. For my depression i preferr omega 3 oils like flax seed or fish oils and vitamin E helped. Also the brain is still powerful, although ours may be infected. I started telling myself what makes me happy and making myself smile. When you smile, real or not, happy chemicals are released in the brain. The old addage fake it till ya make it some times works. Its hard to be happy and attached to people and the world with this illness, especially with neurolyme, which is what i myself have, but use what is left of your mind lol and talk to your self tell yourself you like this or that. That his/her butt is hot n stuff like that. You can get yourself goin a bit if you think upon IT. Fantasizing or just thinking about what you like in some one or even life, makes those things more enjoyable. Anyway thats how I have dealt with the numbness. Now im stuck in anxiety and drug tripp feelins, but workin on it.
BB
Posts: 158 | From Vancouver,WA 98682 | Registered: Aug 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
OK, so here's the thing.
The primary sexual organ is...?
Tut tut, you make me blush! That's not the primary sexual organ!
The brain is.
And here is a fact completely overlooked in all the medical monographs:
Your brain is trying to run away from home.
Well, who can blame it. It's awash in endotoxins, under seige by who knows how many spirochetes, piroplasms, micoplasms, bugs and bogeymen.
So those signals for intimate moment-type responses are struggling through heavy fog, crossed wires, bandits, orcs -- in general, they're trying to get through the mines of Moria on a 3-legged pony walking backwards.
And if they do get through, who's there to receive them? What with your brain trying to catch the first flight that it can from planet Hell .
But seriously, that sense of depersonalization and anhedonia are well-documented (by Bransfield and Fallon, among others) symptoms of LD, as is the loss of libido.
Recognize that it is a symptom, just like the headache etc. You can use it as an indicator of progress, as it goes away. But you can't force it, just like you can't stand on a broken leg just by force of will.
There are some things that might help -- Trout reports that Samento had a lovely side effect on him, the sly dog. SAME-e works for depression and neural stimulation for some. Growth hormone, in some cases. Anti-depressants for the depression, but they usually depress the libido. Taking care of yeast. For me, I think the the cholestyramine tx for endotoxins really pushed me forward. But the main thing is getting rid of bugs.
At 3 months, you're just getting to the good part; it'll probably be a while before you get much of an upswing.
It's awful, I know. Truly, I've been there --life is like watching some boring foreign movie with subtitles with no character development, no plot, and no breaks for commercials. I mean, really, it's the last indignity of an ignoble disease. And it's impossible to explain to someone who hasn't experienced it.
But just think of how happy you and your brain will be to see each other when your brain decides it's safe to come home. To say nothing of how happy those unmentionable secondary organs will feel.
Oh and PS: Posts are a lot easier to read if you break them into paragraphs of 3-4 lines or less, with a double space between.
[This message has been edited by minoucat (edited 12 September 2004).]
I wish I would have found out about this website earlier on. DocDave, I too experience fits of this rage. It comes on like this unbearable feeling to just freak out about the littlest unimportant things. I gives me the strongest desire to just SCREAM and then break something, but I don't know why?? I am currently being treated for lyme depression because I have a very lyme literate doctor(Finally) who understands most of what I am going through. 150m of wellbutrin which seems to work, although I can tell the difference between a chemical happy, and just happy.
BarelyBreathin, I am also taking many many vitamins one of which is the Omega-three fatty acid oils. On top of these I am also taking Rhodiola Rosea to increase neural activity and give me energy. I defintely notice a difference if I do not take that. I become more sluggish, less motivated. My main problem know though isn't energy, it is being able to have a normal conversation with someone and not having my brain short out and my nerves become agitated. Meetings are an absolute living nightmare for me. I used to be quite a good public speaker before this happened to me. Now I am nervous about talking one on one with someone that I don't know, because of the feelings of unreasonable anxiety that I get. When the meeting is over I am completely drained because it takes all that I have to stay focused on what is taking place right in front of me. This is so unlike me. I WAS a type A personality before I was infected. Now, I shy away from people and avoid conversation. It is so frustrating I can't take it. This feels so good to just vent....
Minoucat, I think you hit the nail right on the head with what you had said. Nicely put. How can I expect to be intimate with someone when I can't even have a conversation with them??? This disease sucks. Give me a broken appendage any day, give me pain, give me a limp. This mental sh-t is torture. I just want my mind back. I am going to try Samento and see what happens. I am not expecting a miracle. And you are completely right about trying to explain what is going on inside you to healthy people. They think you're CRAZY. Hell, I thought I was losing my mind. Has anyone been cured of all of their ailments or is that not every going to happen? I mean am I going to have to deal with this for the rest of my life. I really don't think I could do that. Not in my present state anyway. Are there any success stories out there. All I seem to find are nightmares.
And I'm doing so much better than I was, no longer depressed, my brain is soooooo much clearer. It's been the treatment for babesia that turned the corner for me. I'm a long term lymie too.
Don't forget that most of us here are the hard cases -- people who got well and moved on don't hang around here much.
I know what you mean about meeting hell. Have you had the lovely moment yet when someone asks about a topic you discussed this morning, and you can not only NOT remember the topic, you can't even remember having the meeting?
You can read more about the neuropsychiatric (see, 4 months ago I could never have spelled that! Really!) effects of LD (and bartonella and babs etc) at http://www.lymeinfo.net/psychbiblio.html
Dunno about you, but this stuff makes me feel less alone and helps keeps things manageable.
One thing I will say though, is don't get complacent or rely completely on your doctor, and keep investigating additional treatments -- like detoxing, treating for coinfections, etc. I made a big mistake by leaving it all up to a doc at one point -- well, heck, I got tired and brainfogged, but I shouldn't have, nonetheless, and I paid bigtime.
Sounds like you have a good grip on the supplement thing,and I'm interested in Rhodiola Rosea for me.
Oh, and you can get a significant herx on samento, which has abx properties, so tread softly with it. You can search in Medical for people's experience with it.
posted
Thanks for all of the links. I went to purchase Samento this morning and I could not find it at any of my usual supplement stores? Any ideas of where I could get this??
posted
C, If you read things on encephalopathy, you will understand why your brain is assualted and making you feel depressed, emotionless, anxious, and unable to organize information quickly as it comes to you in conversation.
Neurological Lyme disease causes brain inflammation. It's like a continuous case of encephalitis or meningitis. And brain inflammation in the white matter, such as the frontal and temporal lobes (and hippocampus, affect your executive functions (temper, temper), and your state of happiness, anxiety, and sexual response.
But when the inflammation goes down, your brain will slowly repair itself and come out of its swollen shell, so to speak. Even when the inflammation goes down, it may be a while before your brain function returns. People with concussions have the same problem. It often takes them at least six months to get back closer to normal.
Before treatment, I was completely apathetic, no motivation to do anything. When someone threw a party for me, it just seemed overwhelming and I had no excitement, just dread that I had to act pleased and social. I was anxious all the time and became agoraphobic, unable to go outside unless I was with someone. I could not even cross the street alone.
It took about four months before I could organize things and make plans as simple as going to the store, buying food, and making toast. I finally had the energy to make the bed. I finally had the ability to think and organize my work. And I took pleasure in being with people. Occasionally, I still had rage at the slightest provocation, which shocked me when it happened.
Today, while I am not cured, I have come such a long way that I am amazed that I had once been so afraid all the time. I love having people over for dinner. I make plans to go hiking. I organize my day (well, one of those Palm PDAs with alarms help a lot, too, and I am enjoying life to its fullest.
So take heart. You will get better. Your emotions will return. Expect up and down days, and cheer for yourself when you see the slightest improvement. Those small ones will amount to big ones over time.
Pooch
Posts: 548 | From Diagnosed 2003 | Registered: Jan 2003
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posted
Lyme is so devatastating is so many different ways! One thing to keep in mind that some of the emotional stuff that is started by the lyme, is exacerbated by the teatment. This includes, but is not limited to, the "herxheimer" reaction to the drugs. I think you will definitely find it all coming back, in time, but it's pretty early in your treatment yet. I went through many ups and downs, and now, after more than a couple years of treatment, I have been off treatment for a year plus and things are still improving. It's not all back yet, but getting close. Be sure you docs are considerng possible co-infection, especially babesia..-- Do you have a really lyme-savvy doc ("llmd")? I don't know Amantadide- is it for a coinfection? Or anti-yeast? Hope things keep getting better; that each "up" will be just a little better than, and each "down" won't be quite as bad as, the last. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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docdave130
Unregistered
posted
c: i don't know if your male or falmale but it doesn't matter for this discussion. the wellbutrin is a good choice with probsbly the least libdo reducing side effects of all the antidepressants. i was unable to take it and went thru the gamit of over 20 meds before i found one that worked. GUESS WHAT ANY SMILE IS BETTER THAN NO SMILE EVEN IF IT IS DRUG INDUCED.
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docdave130
Unregistered
posted
sorry didn't finish my post. male or female you can occasionally take a viaga if you really need to be intimate with your partner. it does work in both male and females and counteracts the effects of the antidepressants to some point , at least for an hour or so. i'm not a big advocate on herbs and non presc meds only because there is a very wide range of production on the same products and ABSOLUTLELY NO CONTROL BY ANYBODY OR ANY GROUP. VERY LITTLE TESTING HAS BEEN DONE ON THESE HERBS ALSO. MEDICATION IS ONLY HALF THE SOLUTION TO NEURO LYME TROUBLES. you must speak with a knowledgeable therapist to discuss your problems,your own, your mates issues, and even your family issues. my wife didn't think i was sick until after 3 years of treatment 3 prostate biopsies,and the fact the i was able to get social security disability. that was the kicker, nothing else, if the government said i was sick then i must really really be sick and not sick in the head.it is a very difficult issue for your mate and we came very close to divorce many times. this is something a therapist and your doctor along with your mate can discuss together so that they really understand what is happening to you ,your mind and your body.
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quote:Originally posted by minoucat: Oh and PS: Posts are a lot easier to read if you break them into paragraphs of 3-4 lines or less, with a double space between.
Yes please! I can't read all this stuff! but I get the drift! been there, done that! Yes, it will get better.
I've had lots of abx, hormone treatment helped tremendously, and now a wonderful new product has taken me over the top with this. So hang in there and get proper treatment for the brain infection you must have.
Also, some abx can cause depression...so keep that in mind. Flagyl puts me in a deep dark well that I can't climb out of!
posted
sorry again more info. my wife being in her late 50's and with breast cancer has also lost her libido. she can not take estrogen because the cancer was estrogen based. she refuses to take medications for her libido and does make it tough on me. she finds that smoking grass( not kentucky blue the illegal stuff) increases her libido significantly, is fairly harmless, and allows her to sleep well at night also. i am not condoning marijuana for some uses but it does work and many lyme patients may find relief by using it occasionally. yes i know its illegal and being an ex doctor should not recommend such, but it doies help with many people, unforunately it does not work on me at all. just another thought. my phone number if you want the dea or atf to call me is 1-888- dumb- doc
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sex drive kaput it happens me to. WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
Post for a LLMD inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
C, has anyone tested you for co-infections..My daughter has Bartonella along with lyme disease and much more. She has suicidal depression and frequent rages..Not sure how her sex drive is responding..Hopefully she will not find out any too soon.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Yes, I have been tested for co-infections and fortunately I have none. Just alot of Lyme. Does anyone know where I can find the herb Samento???
Posts: 26 | From NJ | Registered: Sep 2004
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