The 2 doses of IV Rocephin I did back on Tuesday and Wednesday made me so sick and I guess caused a Herx that I'm still going through or the infection stirred up and is after me in a bad way.
I have been crying like a baby every day and feel scared out of my mind.
I can hold a conversation, but I feel so damn confused and in another world. I'm also feeling paranoid, which I have never had before.
This disease just doesn't work when you have two little kids and a wife who doesn't/won't try and understand what your going through.
Everyone wants to see my on Psych drugs. I already take Klonopin and Xanax, but they arn't working the last few days.
I've been getting this thing with my entire body where I'm kicking all around. I can't sit still and just moving my legs all over the place. I take a tiny piece of Xanax and it calms it for like 15 min. and then it goes back to the moving all around stuff.
I can't go for a very long walk with this POTS thing as my HR is up more than usual when up.
I had total relief in Symptoms 2 nights ago after a coffee enema, but I've done 2 more now and not getting any relief and back in this bad place.
My Dad came over today and wanted to take me in to the Psych Hospital. I refused despite having bad thoughts.
I'm going to start back on an AD I use to take called Serzone that worked wonders for both my mood and my anxiety. It works much different than the SSRI's and I tolerated great in the past. Other than that I don't know what to do.
Could I still be Herxing from just 2 doses of 2gm of the IV Rocephin ?
I sure hope thats what this is. I feel like a body in this house. My kids come home from school and run out of the house. My wife barely acknowledges me anymore, which I truly understand.
I can't believe how this disease has screwed up my life. I guess I'm just slipping a little here and need a pick me up. All I know is I was never like this before the IVIG and even my father agrees with that one.
Oh and lastly, I'm freezing all of the time now. This is new. Even the warmth I would hold onto after a hot bath seems to fade quick.
I could go on, but I hope you get the message. Thanks for listening.
LT
Posted by hopeful4 (Member # 8486) on :
So sorry to hear you are suffering like this. Because you say:
"I have been crying like a baby every day and feel scared out of my mind."
have you contacted your doctor who is treating you with the IV Rocephin? How lyme literate is your doctor?
I'm no expert on this by any means, I was not treated with IV Rocephin. However, early in my lyme treatment when I was on oral antibiotics, I did experience a deep, dark, plunging depression, and became super scared. My doctor had me back off on the antibiotics for a time, by taking a break, then going back on smaller doses.
Therefore it makes sense to me that the dose of antibiotics that you have taken could be causing your "psych" experience. Yes, it could be the herxheimer, where the lyme is being killed off rapidly and is releasing more toxins than your body can handle effectively.
Are you detoxing? Such things as burbur, or chlorella, or detox baths, footbaths, saunas, etc.? Drinking lots of water?
I don't know what to say about the psych hospital, but, will they know how to treat you? I do wonder that. Are there any lyme literate psychiatric doctors in your area? I think that would be the best bet, if your own doctor cannot help you further. There is something called "psychiatric" lyme to consider, too.
Sorry, too that your family is having such a hard time dealing with your illness, and not so supportive. Can you contact any support groups in your area? You could surely use a friendly face or a voice on the phone that understands what you're going through.
Best wishes, Hopeful
Posted by Curley911 (Member # 2205) on :
Hi Lymetwister,
Your depression, anxiety and fear are off the charts at this moment. I can't tell you if it's a herx, could be, but to me it's important to help you get through the night right here and now.
If you are truly having bad thoughts as you mentioned, then you MUST call your Dad or someone and let them know you need help.
That said, you need to work on what you can fix right now. Keep taking hot baths if you have to to stay warm. Use an electric heating pad.
Keep your nerves and paranoia down w/careful doses of meds. Do you have serzone on hand?? If it is prescribed for you and you know it works, take it as prescribed. Of course be mindful of what you are mixing together.
I once felt like you, treatment and time passed and today I am well. I definitely take my psych meds to keep my head straight. Can't do w/o them.
I hope you can find something hopeful in this post. I am not literate on your abx so I cannot help there.
I DO know that this WILL PASS.
Hugs, Curley
Posted by lymetwister (Member # 19590) on :
I told my father about the bad thoughts. I just feel so trapped inside this box sometimes with no way out.
If I get to the point where I would ever act on the thoughts, I will be sure to go and get help. I'm not ready to quit, just having a few bad days all stringed together.
Coffee enemas usually clear me up well and today they are not. I just took some Mag as I'm very shaky and my knockout meds so off to bed very soon.
Tomorrow is another day. I'm just worn out from all that kicking around.
It was like that "I want to crawl out my skin" thing ALL DAY. Had it yesterday too and a little the day before.
I guess I'm just wiped. The Serzone works hard on the 5HT2a receptor so I will get some needed sedation along with my Klonopin and hopefully sleep well.
Thanks for your thoughts,
LT
Posted by Keebler (Member # 12673) on :
- You could be experiencing all these reactions due to porphryia. This could become more serious, if that is the case. If you do have to be hospitalized, please ask them to consider checking for all the kinds of porphyria - not just one.
I won't go into detail about that since you are an RN and aware of what porphyria can do if the liver is overloaded.
Can you take a break from all medicines and focus for a week or two only on the best foods, fresh veggies and berries or apples and whole grains, proteins and good fats? Carrot juice may be the best help of all as beta carotene is one treatment for porphyria.
Sometimes, going off everything (under the guidance of your doctor) is very helpful to let the body take a rest.
Can you rest more, maybe getting some music that is both calming but also cheerful?
Sometimes when we feel over aggitated we really need to give our bodies some quiet time. Hope you feel better. -
Posted by sixgoofykids (Member # 11141) on :
Coffee enemas gave me relief, too, sometimes more than others. Coffee enemas increase your glutathione, so I can't help but wonder if a glutathione IV might help you if the coffee enema is??
Also, are you drinking whey protein daily? That gives you the raw materials to produce glutathione. I drank the whey protein all the time when I did the enemas.
The Hulda Clark liver cleanses also helped me.
I can't help but think you're severely toxic since you got the relief from the enemas.
I also think Keebler has a good idea. I know the KPU protocol helped me tremendously with detox and anxiety.
Posted by CD57 (Member # 11749) on :
Also Lamictal really helps with the psych stuff. Its not an SSRI but acts as an antiepileptic to calm limbic system seizures in the brain.
Posted by Rumigirl (Member # 15091) on :
Do you have an LLMD?? If so, you need to call them first thing Mon. am and tell them what's going on, and get guidance!! And if you don't, you need to work on getting one ASAP IMHO.
If you don't, you need to get help from whatever doctor you have that understands Lyme at all. And, yes, there are Lyme Literate
Psychiatrists, also, which might be helpful---although it sounds like most of all, you need a good LLMD. There is one in your area.
And, also get in touch with a local Lyme Support Group for sure. It does sound like you can't start with the full dose of rocephin without more detox, like you need to start slower. This is a crisis! (Not that I need to tell you.)
Posted by bettyg (Member # 6147) on :
twister, stopping to give you a much needed hug/kiss and glad you are opening up to your dad about what thoughts are running thru your mind.
sounds like you have restless leg syndrome; always on the move like me. best wishes my friend hugs
Posted by Cass A (Member # 11134) on :
Dear Twister,
At times of very severe confusion and upset, what works for me is to TAKE A WALK AND LOOK AT THINGS. It helps to have someone with you. Go out, walk, look at your surroundings. Keep looking OUT.
When you get tired, turn around and walk back.
Good sleep follows from this.
Best,
Cass A
Posted by springshowers (Member # 19863) on :
HI. I am sorry to hear all this and can relate to that feeling of no way out and everything feeling worse and worse the harder you try to get better.
I new friend of mine send me an email one morning that saved me a few times now. Sounds simple. But they said to me. Lay down on your bed and lay on your back fully extended and just BREATH> Take breaths in and slowly out and take them deep into your core.
Ok yeh. I said I breath well al the time and pay attention to posture etc.
They said.. well sometimes we think we are doing it but we really are not stopping to do it and going through those motions because we are in pain or paniced and stressed.
They said. JUST DO IT>
I did.
I ended up breathing into my pain and I even did it long enough I cried and passed out. Two hours later waking up to at least getting THROUGH those two hours.
I have held onto that.. When I get peaked into Pain and fatigue and feeling like quiting this whole thing and life.. I do it again.
it gets me through those times at the least. And that is all that matters at that moment.
I have some vivid halluciations or dreams or visions during that time too. It is intense and what I feel as a way for God to take me away from that moment.
Give it a try... BUT actually do it... Take that time to do nothing but breath and not think or feel...
Clear out all thought and stress .. take all the time it takes to get there. The deep breathing is powerful and will take you there if you give it that time.
Turn everything off. al tv computers radios etc.. ..
Anyway. I hope this might help you just for those moments.
Then talk to family and doctors and friends and whoever you have close too you and figure out maybe what is going on and what might help you clear this feeling out.
I am at that point myself. Sometimes when we try hard to hit this disease we fill up with neuriotoxins and such that are not flowing well enough and end up creating some bigger problems or side affects.
Good Luck.HUgs and Good Thoughts your way .. From one to another... . Hang in there..
We got to get through this stuff.> i am glad we have support here and there are many lyme sufferees that DO understand even when your family or others around you dont.
I hold on to that too.
I understand what your going though!
Keep in touch and let us know how your doing..
Posted by Lauralyme (Member # 15021) on :
Could you also try charcoal? Also the lemon/olive oil drink made in a blender. Detox as much as you possibly can. So sorry you're feeling like this, my thoughts are with you.
Posted by METALLlC BLUE (Member # 6628) on :
Sounds like you're reacting to the IV already "in my opinion." Those are classic symptoms that I experience. I've taken all the drugs in an the world, but nothing works during a spike in symptoms.
All you can do, is keep yourself busy and avoid everyone (even the kids and wife). If she understands, fine. If she doesn't, fine. There is no way to win with Lyme, I've figured that out. Survival is key, not the feelings of others.
Live through this, take care of yourself, then you may have something to give when you're not out of your mind suffering with full blown psychiatric suffering.
Your wife should have seen Under Our Skin. If she hasn't, buy it. If she has and still doesn't understand, well..........
Posted by lou (Member # 81) on :
Wondering if you could ask someone from the local support group who is good at counseling to talk to your family. Sometimes outside intervention can help in such a situation. But it has to be someone good. If you were located further north, there is a good professional family counselor who helps a lot of lyme families.
The problem is that we sometimes need help beyond what our already overwhelmed doctor can give.
Posted by Curley911 (Member # 2205) on :
Good Morning,
How are you today? I hope things are much much better today and I agree w/Lou's suggestion.
If you can get ahold of a copy of Under Our Skin maybe your family can watch it and be more understanding.
Snagfilms.com has the most comprehensive trailer I have found.
Click on What's Hot then Scroll down to Under Our Skin and watch the trailer.
You can also try www.undertheeightball.com (Under The Eight Ball) although it might be a bit much for them to comprehend at this early point.
Hugs, Curley
Posted by bettyg (Member # 6147) on :
twister started another post today; he's in ER at hospital waiting to be seen...
Posted by Lymetoo (Member # 743) on :
Taking Serzone would be a far better solution than being committed! They will really screw you up! and likely won't allow you to continue the Rocephin.
Sounds like the Roc is getting into the brain... that's good.... but the result can be difficult to say the least.
Will be praying for you!
Posted by lightparfait (Member # 22022) on :
Flaying of arms and legs could be a form of "chorea" called "Hemiballism". See link a ask MD to check for this.
![[Smile]](smile.gif)
hugs