Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
If oral antibiotics are too strong, that is the recommeded dosage is too high,
would this mean that if you went to IV, that the IV herxing would kill you? I know that a young woman in my area, died from IV Rocephin on the 9th day, it was administed at the hospital, not by a LLMD. This may have been the herxing, she was very ill, and my heart just sinks because of this, that poor woman. I dont want to be another poor woman, I have to do this right.
Does IV produce much more herxing? or does it just get more into the system then orals? This question never entered my mind when I was at the LLMD appt, so am asking here. I will call him next week, I have to have the IV from an
Infectious disease Dr, not the LLMD, which is TOO bad because the LLMD is cautious.
I am not sure what is going on, if the Biaxin is just too strong, or if something else is going on. I just dont feel right, I dont know if my system is crashing from over herxing, of if I am getting worse. Or if I need babesia, I am thinking far too much, and mind is going insane, another summer indoors while others are out at the lake the cabin boating and having fun, here I sit or lay in bed, trying do beat this ******* out of my system.
I had a visit with LLMD and I was worse this visit then before, better in some ways, but VERY VERY ill in the light in his office, like an anxiety that was going to kill me, and nausea.
The last visit I had NO light sensitivity, but I was allergic to all foods, this has gotten better, it is the light, and the EMF sensitivity that has happened since last visit. It has improved, but WHY did it happen, is it that I still need babesia treatment I ask myself, or is it that I need
IV to get into the nervous system and brain? I dont know. I am thinking out loud. I have to be calm that is not easy
I have found, I dont even know myself anymore, I am angry to no end, scream wildly into the pillow, sob until I am near dead, all because I want to get the heck out of this house and live the lost and new years. My mind has gotten so ill from being ill. I cannot remember words.
I do know that I have been told to stop antibiotics if I feel this way and then I would know what is going on. I am thinking to stop them to see if in fact I am over herxing.
My mind is at the end of its road, and I am not rational, nor sane at this time.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Hi Trish, Yes your emotional herx maybe to much right now.I am not a doctor but given the nature of a long standing bacterial infection being hit with the antibiotics can be hard on the emotions.If your doc says you can ease off or stop to see if its a true herx consider it.And know that this feeling will pass and youll be doing all the stuff you used to do again soon.Try hard to remember its the bugs that are the problem.I feel confident that you are a stable and strong person .WE DO understand what youre going thru.God Bless RG
Posts: 140 | From Texas | Registered: May 2006
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LostCityAgent
Unregistered
posted
How does the IV thing work? Where is it located on the body?
If one was say a Nun with a full habit, how would it work?
also. I can smell the abx in my urine. Does this mean that it has finally integrated into my body?
Firstly, if neuroborreleosis (sp?), then that in itself makes everything kind of impossible. If memory is affected it really is the cause of much turmoil. And if it has gone so deeply neuro from the brain into the mind...just...I don't know!
Right now I feel brain dead so I may neglect what I mean or not express it properly. But my dreams have been very with death in ways lately. What does that mean? So much of me has died for sure, but does that mean I have to die and does that mean there is not a me that will be born into a life ahead but that if I would just....see it. See the hope and know it is possible even though it will take a long time, and even there there is a chance, not.
But I am right there with you. Going into 4th month babesia treatment and very much weak and sicker than ever. In my intuition, I know the heart of the matter is the Brain and nerves and bones part for me. Funnily enough, I realized that at the Cardiologists office today.
I questioned, if the ketes are not often detected in the blood and there is the blood brain barrier then how would putting abx into the blood kill the ketes? I don't know.
I am afraid either way. I am afraid to continue babs treatment and afraid to go on IV for the same reasons as you. Because I already feel so bad that I feel like I am dying and if I do more, it may kill me.
I go back and forth with it. Back and forth.
I think too that this is like chemo and everything is unbalanced now. For me, I don't think I will realistically be symptom free when I stop abx. I will have to stop and then recover. Just like one would with chemo. It is not going to be easy to regain the whole of life even after the abx. Because there is so much more than the abx to the healing of this junk.
But I have been bedridden and weakening and feeling that unwellness you are feeling and insane so I know what you mean. What gets me most is the memory problems to the extent that I have them. Feel like Sybil or something...then one of those speaking in tongues people. Yesterday my partner asked me, "where is the plastic ..." and I said, "what is plastic?"
I also know I need to start forcing myself hard to do more physical activity, yet I don't know if now is when, or later when I have more strength. Seems the only way to get strength, to keep healthy heart is to circulate. Even is small stuff at a time. Very crucial.
The problems is we are not attended to. We are neglected. The LLMD's are too busy. And there is not enough scientific evidence supporting the theory of long term abx. At least that's my understanding of our situation.
But does anyone know the one answer for everyone with regard to the neuro?
I have heard it said that the babs needs to be addressed before the lyme or the IV will be noneffective. And there have been testimonials form people here that the babs is the thoughest to fight, but once through....
Seems like you and I and probably many others are smack in it and being so, not wanting to have to have such a long road ahead before being well, without the guarantee that we will get well, and then feeling that the abx are making things worse....it's hard to decide how to continue.
I totally relate Trish about not knowing myself anymore, by not being myself.
I think the concern is if you stop the treatment, you will develop more superbug or resistent or it will be problematic. My LLNP says to keep with it. Yet, I am developing complications and worsening in many ways or at least the improvement is minimal.
So, in my instinct it says, finish the babesia treatment first. Not sure what that means. For me, I believe I will do it 4 months no matter what symptoms I am left with regarding shortness of breath, chest pains, lung constriction, cough, etc, etc because frankly, I cannot rule out that the abx themselves are not also contributing these very same side effects.
Then I plan to do IV.
If I can't tackle the neuro, I am nowhere. It's almost like I need 24 hr intensive care. Maybe I'll call on an Angel and send one your and everyone's way too.
That Dr. B says babs can be fatal means it's imperative. And treatment at minimum should be 4 months. Unfortunately, there can be relapse.
But that there is the controversy makes it hard for those of us in the thick of it. I am just trying really hard to listen to myself. Knowing too, that I can't fully trust myself because I don't understand what it is that is happening.
You mean to tell me that I am feeling worse means I am feeling better??? Well then, when does feeling better mean I am getting better????!
Seems to me that getting the Brain back to working is just as highly imperative.
What a deep and long dark tunnel, eh? How to get out? One step at a time. One nap at a time. And not beating the self up for this.
Hope you are dreaming helpful dreams. I had one recently....cod liver oil. So I am taking that now too.
There is anohter post today about forests and trees, which I think is really piognant as well.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi you guys,
I am sorry you are in this scary place now. I am sending healing and strengthening thoughts to you - Trish, and Painted Turtle, and Everyone.
One question i had for you: as you are on these doses of abx, are you taking enough probiotics? This is so very important, and also to stay on a no-sugar, low-carb diet.
The abx will wipe out all the GOOD bacteria in your gut, and we need those to fight off the bad bugs and fungal infections that can get in the gut.
I felt so weak and spaced out when I had the gut imbalances from not attending to gut health while on the abx.
Also, are you doing anything to flush out the toxins and die-off? We need to help our systems get rid of these toxins that the dead bugs produce.
I'm not an expert at all - do ask if others can provide more info on this.
Have you talked with your LLMDs about pulsing the treatment? I have heard of an LLMD who does Rocephin one day on and one day off - and there are other forms of pulsing / alternating.
Do keep trying to listen to your body....
Someone wrote me once that even with all that was going wrong, our bodies are still amazing creations and are constantly and always and forever striving for balance and healing.
Sending my heartfelt understanding and wishes for your feeling better and like yourself very soon
Posts: 1067 | From East Coast | Registered: Dec 2000
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Trish,
I wouldn't be afraid of the IV's, they've helped so many people. My teenager did 5 months worth and he improved greatly plus it saved him a lot of wear and tear on his stomach.
Our doc always started him on a low dosage and then gradually ramped it up. You could do the same. 1 gram of rocephin and then after a couple weeks go to 2. Zithromax could start at 500mg then later go to 1000mg.
Excessive herxing is counter-prodcutive. What is your doc's {LLMD} recommendation on IV ? Could he tell the ID doc what dosage to give ?
Your emotional swings could certainly be part of the disease. Bartonella is notorious for causing moods. Have you been treated for this ?
You stated some things are better and some things are worse. Unfortunately, this is how treatment goes. The one thing that wins out is to stay after the keets, a consistent program of abx will wither their number. It's no doubt a tough fight.
Maybe there's something your missing ? A little more detail on your situation and maybe folks can help you more ?
The other thing I strongly recommend is have your doc prescribe something to lessen your symptoms at least until the abx takes hold and the "keet" count drops. Meds to help with emotions, pain, etc.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Well then, when does feeling better mean I am getting better????! 
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