posted
I am feeling so extremely low right now. This might be a little hard to understand cause of my brain fog but Im gonna try my best to get my point across.
I am so very upset about the person I am becoming. When I was ill I was pursuing modeling (not that it will happen now cause I cannot keep up with my looks anymore and I am trying to accept that my dream is no longer going to happen)
I also was the most intelligent one out of all my friends. I can now not even write an understandable sentence. I feel as though I lost my brain AND my high self esteem. I was always the first one my friends would go to for advice, and now I can't even have an intellectual conversation with them.
I just wonder if these things will be gone forevor. He says he will get me A LOT better within a year but I am so much worse than before I started antibiotics.
Im assuming that all the bugs all escaped to my brain when I started the medicine and they will be there forevor. It's just to much to handle. I have written down the medicine I am on in my profile.
Do you think that maybe I am on too much and should just stop the medicine (I had no brain symptoms before this medicine) or should I keep with it and keep getting worse.
I know some say that if you have to bad of a herx (for me a neurological one that you should take a break and let the toxins clear out) and others say to just rough it out and it will get better. But I have not gotten better yet. I have been in this brain herx for the past 3 months.
Is it a worsening of my symptoms or just a herx? I know nobody knows for sure but anyones experiences or advice will greatly help. I am at my lowest point and am not sure how much more I can handle, but am scared that if I stop the medicine it will just cause the bugs to rapidly replicate again.
Thanks..
[ 09. May 2008, 03:36 AM: Message edited by: trish4 ]
Posts: 370 | From NJ | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Trish...
Sounds like you need a helping hand... and a break! This stuff is VERY difficult. So sorry you are dragging so badly.
I am NOT one who believes in toughing out the horrible or ongoing herxes. It doesn't make sense to me to fry your innards.. and your brain.... and feel so stinking bad every day.
I try to think of it this way....
We will never get those lost days back again for a second try.
I would ask the LLMD if he/she thinks it ok to do a pulse type protocol maybe? After a break and you clear out... maybe consider three weeks on... one week off?
And to be honest.. I've never seen anyone who "toughed it out" and suffered endlessly by pumping the meds with no breaks get cured any faster or any better than anyone else. I went through it and it sure didn't "cure" me.
Actually I've seen many folks end up much worse for a LONG time (some forever) because they wouldn't take a break and thought being tuff was the way to do it.
I've even had folks here tell me THEY were not going to end up as sick as I am... and they were going to NOT be a sissy like me... and were going to be cured by doing tons of things all at once in big doses. I've been accused of being a sissy... being a whimp... and being "too old with no life ahead of me anyhow".
A number of these poor folks ended up in the hospital multiple times... some are worse now and remain worse than when they started... and some have disappeared not to be heard from again.... and some have passed away.
With lower doses and pulsing I can carry on and feel so ugly all the time... and can take advantage of the days I have left ... rather than laying in the dumps waiting for a miracle that may not come.
This is only my opinion... and you need to check with your doctor before changing his/her orders. OK?
I hope you soon get a break and feel better. There can be sunshine on the other end of the deal.
posted
Poor baby. I am sorry that you are feeling so low. This sux, for sure.
I am about where you are in this thing. I decided to stop Abx for awhile, my herx was getting so bad. I am doing some Samento for now instead, but may stop that for a few weeks as well. Honestly, when I stopped Abx this week, I really felt better than before. So, I'm going with that for now.
As hard as it seems, light exercise will help the bugs move into the bloodstream to be killed, so even if you start w/ 5 mins and work up, try to do something to keep yourself moving.
And don't despair! I know it sounds cliche` but God works in mysterious ways. If you are not getting to live according to your plan, it's b/c you are living to His plan. You are meant for something else, and that will come your way.
The way I got to my Dx of Lyme was one of the worst and most bizzare set of circumstances you can imagine. At the time I was going thru all of the mess, I just couldn't figure out why I was being forced from my 6-figure income job, why the person that had harassed me at that job showed up at my new job as my boss, of all things. But now that I am past all of it, I look back and see that it was all part of a big plan to get me where I am today.
Trust in the plan and the rewards that God has for you. You will find that what He has in His plan for you will be better than anything you have dreamed up for yourself!
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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posted
Your meds aren't on your profile right now. I think I remember you are on amoxy? I had a lot of trouble with that one .... I took it for five months and never really felt very good on it.
I'd stop the meds for a day and focus on detox -- sauna, coffee enemas, water, eat healthy, sleep, exercise, detox herbs -- whichever of these you can do.
Then I'd add back one med per day. That way it's not a long break, but maybe long enough to figure out if it's one med making you feel so horrible.
I'd also discuss this at your next LLMD appt. It could be that one of the meds is not right for you. Once I hit the right combo, my head cleared and I could think again. I totally know what you're saying.
For a while, I seldom even washed my hair! I seldom wore makeup. It wasn't just that I didn't have the energy to put the makeup on, I also didn't have the energy to wash it off.
I used to be an avid reader .... I could join Mensa based on some of my graduate school entrance exams (I did just to get the card, LOL) .... then I got so bad that I couldn't carry on a conversation. I couldn't answer questions that I was asked, and I couldn't verbalize what was in my head.
I also had trouble driving without getting lost, and couldn't maneuver the grocery store alone.
This has all gotten better. I still have ups and downs, and I am having a hard time with starting doxy, but I can read, talk, wear makeup, and wash my hair regularly.
If you take more than a day off of the meds, I'd talk to your LLMD about it. It could be beneficial for you to see how you feel off the meds for a week so you can see where your baseline is. You might be surprised to find out how much you've improved.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My LLMD does not believe in too aggressive of a herx and feels it can do more harm than good. He believes in detoxing with activated charcoal and Alli for water soluble and fat soluble toxins, respectively. If the herx gets too bad, back off. His motto is be a tortoise, not a hare. Slow and easy wins the race. Borrelia replicates so slowly anyhow, so taking a few days off for the herx to clear is no biggy.
I couldn't tolerate amoxicillin or azithromycyin. Doxycycline gives me a milder herx, but it cleared up my brain fog within two weeks.
There's a lot of experiences and opinions on this board. You need to choose the one that you are most comfortable with.
Good luck. CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I find that it is really important for me to drink alot of water especailly when it comes to my brain. Herxes are much worse for me all the way around if i dont.
I would talk to your dr. if the herx is too bad maybe your current meds arent the "right" one for you at least at this time.
I personally dont just stop them because it only takes a couple days off and i start getting sicker (i think because the babs was always there)
but i have changed meds because a certain one was just having too hard of a herx.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: I am feeling so extremely low right now. This might be a little hard to understand cause of my brain fog but Im gonna try my best to get my point across.
I can relate unfortunately.
quote: I am so very upset about the person I am becoming. When I was ill I was pursuing modeling (not that it will happen now cause I cannot keep up with my looks anymore and I am trying to accept that my dream is no longer going to happen)
That's not necessarily true. For today it's not happening, but things change. It is possible you may not experience your dream, but it's also possible you may. See what I'm saying? Possibilities and outcomes have a lot to do with how we perceive things.
Right now you're hurting, run down, depressed, and pretty much feeling undignified, but this will pass. All things pass, and all things change. I know where you're coming from, and for now it is what it is -- but we're here for you, and we're all working hard to find a universal solution.
quote: I also was the most intelligent one out of all my friends. I can now not even write an understandable sentence. I feel as though I lost my brain AND my high self esteem. I was always the first one my friends would go to for advice, and now I can't even have an intellectual conversation with them.
I just had this conversation with my GF a few weeks ago. She was really shocked and didn't seem to realize how significantly affected I was. I don't just feel like I'm retarded, I "know" I am. I can do some things well, but Lyme has taken a lot of my skills or left many undeveloped as a result of the affects it's had on my mind.
My appearance, like you, has been drastically affected. I was gorgeous, now.... I'm chubby, out of shape, and far from the catch I once was. It's hard on me, but I know who I am beyond the illness -- I know, because I wrote it down. Hehe. The fact is, we aren't who we thought we were, even if it was just 24 hours ago. Lyme changes our appearance -- well some of us -- it changes our personality, our thinking, our goals, it changes the course of our lives. We must find meaning in the meaningless confusion of this distortion we experience.
quote: I just wonder if these things will be gone forevor. He says he will get me A LOT better within a year but I am so much worse than before I started antibiotics.
I really don't know where you'll be in a year, but I do know that patients often get a lot worse before they get better. We go through a process which is forward, 3 steps back, 2 forward, 1 back, 3 forward etc -- and inch by inch, we move forward in most cases.
quote: Im assuming that all the bugs all escaped to my brain when I started the medicine and they will be there forevor. It's just to much to handle. I have written down the medicine I am on in my profile.
Sometimes taking breaks is a good thing, as the infection often goes dormant when subjected to an environment which is hostile to it's survival. You can use medications like Flagyl, Tinidazole, and the cyclines to prevent this conversion, and to destroy dormant infections, but you still won't be able to get every bacteria out of it's little niche in some ligament in your spine or knee.
Those require constant cycling and war against the infection, and this requires smart thinking. The infection has growth cycles. It preferes certain body parts, and it's more active during certain times of the year, and certain times of the day. It changes relative to your body. When your immune system drops, it takes advantage. If it takes advantage, and you attack -- you can kill em'.
Herxing is the key. If you're experiencing it, you're killing them. However, it's not wise to go for the long distance Herx. It's better to pulse and retreat, pulse and retreat -- especially with chronic Lyme that's responding like yours.
You also have other options of an alternative nature. These aren't really "back up" treatments, they are in-fact effective as much as antibiotics, but they must be used correctly as well.
Pick the antibiotic that worked best for you, and the second antibiotic that worked best for you. Usually a cycline and a macrolide back and forth in conjunction with Flagyl or Tini works well.
Again, consider co-infections. Bartonella, Babesia? Mycoplasma? Just because your LLMD doesn't know much (I'm not sure if he/she does), doesn't mean it's not a real threat that other LLMD's do acknowledge.
quote: Do you think that maybe I am on too much and should just stop the medicine (I had no brain symptoms before this medicine) or should I keep with it and keep getting worse.
When the illness gets very intolerable while on a treatment, I pull back and take time off, and then I attack again. This is constructive, because it provides the body time to heal, the infection is happier and settles down too, and then you can recommence and attack again. Don't forget to detox. You must do research on detoxification in order to lessen your Herxheimer reactions and better tolerate your treatment. Remember, with Lyme Disease is attacked, it produces a Herxheimer reaction. This reaction is not trivial, it is in-fact toxic to the body, hence the reaction. To remove this from your system requires using treatments that do just that.
Do your homework, consider an effective detoxification plan.
quote: I know some say that if you have to bad of a herx (for me a neurological one that you should take a break and let the toxins clear out) and others say to just rough it out and it will get better. But I have not gotten better yet. I have been in this brain herx for the past 3 months.
Toughing it out is absurd. The infection can last a lot longer than you can, and eventually you'll end up in the E.R. or hanging from a shower rod. You can't kill yourself by toughing it out, you have to take intermittant breaks, even if only for a day or two. Talk to your doctor about it. It's one thing to grit your teeth and fight through the pain to make progress, it's another bashing your skull against a wall and continuing to do it -- the wall isn't going to come down or move any faster by hurting yourself. Lyme is a wall, and to break it, means pulling a Shawshank Redemption on it's *** . You take your silver spoon and dig each day and each night, piece by piece. That's how you win.
quote: Is it a worsening of my symptoms or just a herx? I know nobody knows for sure but anyones experiences or advice will greatly help. I am at my lowest point and am not sure how much more I can handle, but am scared that if I stop the medicine it will just cause the bugs to rapidly replicate again.
It is likely both. The Herxheimer reaction inspires the symptoms to worsen and creates an autoimmune response. Inflammation increases substantially, immune function decreases.
Lyme disease does not rapidly replicate. It is a slow growing organism. It may seem like it replicates fast because you relapse the way you do, but that's not because they're reproducing fast, it's because something occured, and the dormant infection simply became active. Likely in response to a growth cycle change, or some type of immune dysfunction during a stressful period -- the infection gradually comes back regardless.
Also, if you're having drastic relapses after only a few days off antibiotics, that's likely a co-infection. That would need to be tested for though. Consider Igenex, Fry Labs, MDL, Bowen etc. You can talk with your doctor further or ask questions here.
The bottomline, I really do feel your pain, and it's really hard what you're facing, what we're all facing. I've spent most of my life ill with this disease, and I'm young. 21 years of fighting this war, but only recently have I learned of a lot of my options.
We'll win this war, I believe the impossible just takes a little longer.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Thank you all for your support, and input. Everyone's advice greatly helped me make a decision. I am going to listen to what the majority of you said on the board and take a few days break from the abx.
Tincup: I think your right, thanks for sharing
Bunny: I do believe in God and how he has a plan for all of us, I just don't see how his plan could cause so much torture and suffering. Maybe he wants some of us stronger than others. I do not believe in the "he only gives you as much as you can handle" philosiphy, however, since there are many suicides everyday. I do think he'll help me through this though and I pray to him everyday.
SixGooofy: YesIm on amox probenecid zithromax plaquenil and Mepro. I am gonna take a few days off the medicine and focus on detoxing Ill tell you how it goes
Cheryl: Thanks, yeah Ive decided to take a break, so I can see where I am in terms of if its a herx or worstening of symptoms.
MetalicBlue: Thank you for your detailed answer and advice I know I already have babesia which Im being treated for with Mepron, but I might also have bartonella. I am going to ask my Dr. about starting Levaquin at my next appt.
Posts: 370 | From NJ | Registered: Dec 2007
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posted
What my LLMD told me (I think we have the same?) once when I took a break was to start right back on the Mepron/Zith as soon as I had babs symptoms. I started back on those on the third day. Babs comes back faster than Lyme.
Good luck, and enjoy the break.
I do disagree that God sends some more than they can handle because of the suicide rate .... some people just choose to not handle what is allowed to happen to them. If they asked for the strength to deal with it, it would be given them.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I totally know what you are going through right now. I have never in my life felt so down and alone and ugly.
I have had lyme for 29 years but went untreated up until this summer. When my treatment started I was so overwhelmingly exhausted and depressed.
I have no reason to feel this way. I have a wonderful husband an awesome son and 2 step children along with my parents and siblings and friends.
It didn't matter, I was miserable and layed on the couch day after day. I felt that horrible for 2 months and than after I would have maybe a few days that I was able to do things in my house.
My family was so use to me crying that even my dogs ran away when they heard me start!
The best way I could discribe to my Dr. how I felt was that I felt ugly from the inside and it was starting to push and show up on the outside.
My husband told me a month ago that he has never seen me have such a low esteem about myself and that my confidence was gone and I am not the same person anymore. I felt like I was mourning the person that I use to be and I missed myself.
My last Dr.'s visit he took me off of flagyl for the time being because it was affecting me so badly that my body needed a rest from it.
And can I tell you that I haven't felt this good in months. It was freaking me out a bit! I kept saying day after day that I felt great!
Those words haven't come out of my mouth in about a year!
The brain fog is getting a bit better too. I have very clear moments and I feel like a human again. But a lot of times I am walking around as if I am asleep.
When you start feeling better you will see a lot of your feelings start fade away.
Please hang in there, it seems a lot of us feel the sameway you do and that is the disease. I am just hoping this will make me a stronger and better person in the end.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: Bunny: I do believe in God and how he has a plan for all of us, I just don't see how his plan could cause so much torture and suffering. Maybe he wants some of us stronger than others. I do not believe in the "he only gives you as much as you can handle" philosiphy, however, since there are many suicides everyday. I do think he'll help me through this though and I pray to him everyday.
I believe this as well. My idea is slightly different though. I believe the plan is for us to define our meaning in the countless options available to us, which are meaningless until further noted. I also believe however that our choices are limited by our exposure. We can only choose one thing relative to another, and if we don't have experiences allowing us to know we have a choice, then thus it's as though we have no choice at all.
So, it's a dictonomy. We can choose only what is available within the limited scope of our experience. Yet, we can strive to expand that experience if we've been told or come to be aware that such options exist. If we think it's possible, it's more probable that we can create it, or experience it in some form.
I also know that our pain and suffering is relative to all prior pain and suffering we've experienced. What severely pains one person, might be moderately difficult or even minor for another. Our exposure to pain and prior problems gives us information to allow us to cope in the future with difficulties -- much like the human immune system having an ability to often "remember" prior infections it's dealt with. The second blow is much easier dealt with sometimes, and other times, a second blow and finish one off.
I also believe that, based on neuropsychiatric research, neurological understanding, and the accumulated data on psychology over the many years -- that even a person who belives in God, and thinks Suicide is absolutely something that they never, ever, would, or could go through with -- can in-fact commit suicide.
The fact is, suicial patterns and behavior aren't often choices in neuropsychiatric infections. Our biology affects much of our behavior. People who are kind, aren't kind if you damage their frontal lobe, people aren't peaceful if their amygdala has been damaged.
We're literally controlled like puppets, even if we defend to the core, a belief in opposition. Neurobiology has proven our experience and personality and perception are dictated by the effective and proper functioning of the parts of our mind which handle the individual experience or perception.
Even iron can be bent and broken, even the strongest faith and will, will eventually fall when enough pressure is applied.
So do we have a choice? Yes and no. Are we free and entirely infinite, as some claim - absolutely not. Our senses are limited, we only experience "some" aspects of the reality we're exposed to. Examples are easy to come by. We can't see microscopic bacteria without the technology and accumulated knowledge we've acquired.
We came to that knowledge through a process, therefore nothing is immediate in that respect. We can't see infared light, x-ray, radio waves until we thought it possible, and until our skill and technology evolved enough to witness it. We can't see the wind, though we can feel it, yet it is as visible as any other vibratory energy it just depends what is perceiving it visually.
We are not infinite, we are not permanent, and we know enough now to know that "weak and strong" are relative terms.
So that is part of what I believe. And that concludes today's philosophy rambling. Teehee
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Mike..I really appreciate all of your great insight and information on the subject. It's something I question daily, and I do believe in everything you said. Thank you for putting it into words for me If nothing else at least your brain is still functioning at 100% .
This is my first day of my 5 day break from abx and I am already feeling a bit better. (I am detoxing with lemons, burber, and pinella) Who knows what tomorrow will bring though. We shall see... ps yes its 6am and I am still awake ..my new sleep schedule is 630 am til 2 pm Posts: 370 | From NJ | Registered: Dec 2007
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posted
Metallic Blue- I love your intelligent, insightful posts..
You are such an optimist..
"We will win this war"
I hope so......................
I am feeling so awful right now. I am having so much trouble being hopeful and reading your words has helped me....
Thank you!
Laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
The best detox I have found can be bought at any local vitamin store. My LLMD recommended, I have used it, it cleared my thinking, and other symptoms such as nausea in an instant. I now know several people taking this and they are just amazed. Read this link and the links within this post, study it - I was SO skeptical of this, but has been a godsend. I take while on abx 2 hours away though. It is safe and used in hospitals for many reasons...well, just read about it. http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=286
If my LLMD said I'd be much better in a year, I'd be dancing in the streets...trust him and believe that. Hang in there...it gets better.
posted
Laurie: Yup im on 7.5 grams amox a day 4 tsp mepron plaq zith probenecid. It definitely does sound like we're in the same "lyme boat" right now. We pretty much have the same symptoms and started on the medicine about the same time.
Well I havent taken any meds in about 30 hours and I def dont feel as flu like and a little brain fog has cleared out but def not any significant change. (only 1 day off so what can i expect, but yeah..)
Lymebytes, thanks for the info. I am definitely going to get the charcoal. Should I wait and ask LLMD or is it safe to take with everything?
Thanks... Posts: 370 | From NJ | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Laurie, have you ever heard this song? I Dare You To Move?
Listen to the words, and consider what this fight with Lyme means, and what your life means.
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