Topic: Need help with Bartonella Herx, or is it ? Z-max, Flagyl, & Rocephin
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Still looking for answers, but can't find them.
I seem to have this so different then the rest of you, or so it seems.
The days with low grade fevers, body aches, Chronic Fatigue, funky labs are for the most part gone. So I guess I've made alot of progress.
Every symptoms I get now is in my head except for Tachycardia and Occasional shortness of breath.
Here is what I feel:
* When I sit in a chair, I feel movement (not vertigo), but movement and moderate pain in my head, but if I stand up and move around, it's gone, but will come right back if I sit. This sensation is one where it feels like I'm gonna have a seizure, but never have.
* I'm in my third mos. of IV Rocephin 2gm and in my 2nd mos. of IV Z-max. I was started at 250mg for 2 weeks and then boosted to 500mg and at the same time started on IV Flagyl 500mg.
I lasted 5 days and held the Flagyl for 3 days as I started crying excessively for no reason, headaches, and my Anxiety went bananas. I continued on the Rocephin and Z-max during this time, but decided to even hold these as the Crying, Anxiety, and terrible Head pain persisited and I said this must be a Herx.
So last night, which again was 3 days without Flagyl and 24 hours without anything, I did all 3 meds again as I felt things easing up last night.
Wrong, today, I was back to Crying again excessively, Anxiety out the ying yang, and now my heart is racing at rest. I had this under control with a Beta Blocker, but not today. Oh and I forgot to mention, the Stiff Neck that I havn't had in many months has come back.
I am trying to push through this as I'm so tired of being alive but not living. I had been getting out and doing simple things with my kids and everything looked hopeful.
Xanax, Valium, etc. don't do much for the anxiety I get as it's that Sympathetic overdrive feeling and I don't think a GABA thing. Percocet calms me down and I only take 1/4 of a 5mg tablet a few times per day. I cant' tolerate AD's, and I don't think they would help this type of crying anyway as it doesn't feel like a true depression and it is out of proportion with a normal cry.
I will try and get appt. with LLMD tomorrow as he sees me when I get into trouble. Needless to say, I'm not doing anything tonight.
I've hit the coffee enemas, Epsom salt Baths, Lemon Juice, Magnesium, but nothing is working.
So, is this a Bartonella Brain Herx ? I don't understand how getting up and walking around can rid symptoms. I would be moving all day, but most people sit more than they walk. Even if I'm standing, but stop walking, bam, I get many symptoms in the head.
So my SPECT show Hypoperfusion. When I walk, am I getting more blood to the brain ? I don't get any of this. Maybe there are no true answers, but when I do a search for my symptoms, I have trouble finding those who have it like I do.
For the most part, I can think very clearly and multi task. I'm not having cognition problems as in Brain Fog or Confusion like I once had.
I'm wondering if I need to treat Babs as some have said that feeling of motion or disequilibrium is a Babs symptom and according to Dr. B, Babs can also cause the Encephalopathy, but so can Lyme and Bart.
Sorry to type so much, but just looking for answers that may not be there. Very frustrated right now.
My kids go to the Ocean tomorrow and I'm staying behind just 2 weeks ago I thought I was going.
BTW, just to rehash what I've posted in the past. I'm raising my 7 and 9 year old on my own, so I need to be able to function to some degree. I love them more than any father could love their kids. They are my life and I can't hold back the tears when I get hit like this, and I hate for them to see me like this. Going in another room doesn't work, because when I look at them, it can set off horrific crying.
Sorry to type so much...........
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I don't know the answer, but just wanted to tell you I'm sorry you're suffering like that. I can only imagine trying to raise a child on my own when things get bad. I have one young one and w/o my spouse on the bad, bad days, I'd be scared to death.
THis is a wacky disease. I was feeling decent most of the week and last Thursday I'm trying to make dinner. All of a sudden, all hell breaks loose. I can barely breathe. My muscles just lock up on me. It feels like someone's pushing on my stomach, but no other signs of a heart issue. Anxiety through the roof....190/100 BP. Left side of body felt weak for hours like I did when I first fell ill.
A day later...gone. How? Why? Is it even possible? I can relate to crazy swings. I felt like I was going to have to call an ambulance. Absolutely no provacation or bad episode to trigger this odd reaction. It's uncontrollable and scary as hell. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Look into alternate modes of detox.
Every time I see you post, and I read your symptoms and what you are experiencing, it's what comes to mind first.
Just some epsom salt baths and lemon water are not going do much Gary.
You need to open up your pathways, and get HLA tested to see what you genetically are setup to detox and base what you add to your regime around that.
READ Scott's info on detox, grab a Pekana detox kit, and 2-3 other foundational things are a must for people in your state. (chlorella, zeolites, glutithione, apple pectin, b-vitamins, the list is endless)
Many here, including myself just existed in a miserable place similar to yours for years until we discovered the whole face of Lyme, which unfortunately is more complicated than some abx.
The other thing to look into is fungal infections. All those abx (I take them too) create a host of issues aside from die-off and immune suppression. Good probiotics help but don't kill Candida, so staying on Fluconazole or something of the sort THE WHOLE TIME you are on aggressive abx is not a bad idea.
Lastly, as great as narcotics make you feel, they do not come w/o a price. They will increase your crying episodes usually, and Flagyl is suspect for that as well.
The key to handling all these meds, and more, is adequate detox. Without it, the body is doomed to fail.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I feel for you and sit here crying while readind this. I have a LOT of the head issues you have, but unfortunately mine do not go away for even a second... I am a prisoner of my head ... I will get into those symptoms in a second...
I have a 3 year old and a soon to be 14 year old. I have been sick since the 3rd trimester of my pregnancy and when I gave birth to my daughter in 2007 I was so ill, I culd not even take her home with me. I have been ill since the day she was born with this neuro and heart stuff.
I cry all the time, almost everytime I look at her because I love her SO much and I cannot take care of her, and am SO scared to leave her. My son stays with my GP's as he has lyme too, and he cannot bare to see me like this
I have absoultely NO help. Well, My fiance is AMAZING and is my caretaker as well as FABULOS daddy, BUT he has to work and we have NO outside support from family or friends.. so he goes to work a nervous wreck while I lay here and try to take care of our daughter... this disease is awful.
I know exactly how you are feeling (emotionally) and somehat physically...
Here are my symtpoms.. I cannot list them all or you would be here for hours.
24/7 for 3 years CONSTANT severe head/brain pressure 24/7 dizzy/woozy 24/7 feeling like I am being pulled by strings on my head.. 24/7 heavy head feeling, hungover feeling
well you get the 24/7... this is HELL ... also my body veers when I try and walk, and when I do walk I feel like I am walking on air, or water or eneven ground.. if I stop ALL hell breaks loose.. I have to keep going... when I do stop. I cannot describe the feeling I have.. it is AWFUL. I cannot close my eyes or I am going down, and CANNOT walk in the dark AT ALL, I feel like my head is going to expolde and I will pass out and fall.. My fiance has to help me walk. Basically my head feels horribly full and with that brings all these weird perceptual things... I hate it and cannot live this way any longer. I also cannot go into stores as it makes ALL my symptoms worse and I feel like I am on an acid trip. I get very ill at my computer..
Also, I have tachycardia EVERYDAY, anxiety because of my symptoms.. my symptoms are even in my sleep, theye NEVER for a second go away.
I ahve been to 5 LLMD's, I have done abx but only 6 months because of horrible effects. Also, I have done herbs and CRAZY detox and NOTHING has helped. I have been to 50 doctors, healers, natural health practioners, hospitals, etc.. (50 al together) and I am still like this..
well am not completely bedridden anymore, but I am hombound/couchbound.
When I try to stand u from sitting.. omg.. it is a rollercoaster ride. I cannot stand in the shower and sitting is also hell because I feel like I am on a rocking boat, so sometimes for days or even weeks I go smelling because it is tortue to be in there
I havent stood to take a shower since 2006
My pupils are all screwed up.. right one bigger than left.. been to my eye doc 5 times.. no reason.
I have labs that are ALL over the place.. HIGH Crp, and sed rate, HIGH ANA and RF, HIGH wbc's and neuts.. ALL THE TME... I have had co-infection testing from Quest, IgeneX and MDL labs and ALL negative.. I only test + for lyme through the IgeneX IgG western blot.. but no treatment has helped.
My spect Scan shows "mild to moderate diminshed cortical activity in a scattered distribution bilatteraly in the cerebrum, and relativley diminshed activity in the right basal ganglia especially in the caudate"
My doctor has NO explanation for this and now beleives I have some weird autoimmune disease... yet, I still have no treatment..
anyway, my point is.. I understand and it is so much worse when you are this ill and have NO outside support and are trying desperately to take care of your children when you can barely care for yourself...
Wishing you the best of luck in treatment and praying for a cure for these nasty illnesess.. whatever label we give them.
Peace and Blessings
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Okay....I get your symptoms, completely. Your're not alone with this.
I too am a neuro sympathetic overdrive mess. My nervous system is ALWAYS on high, to varying degrees, but always. Tremors, twitches, racing heart, dizziness/rocky boat, numbness/tingling, internal vibrating and buzzing, horrible neck pain (and more)...I do not, thankfully, have any cognitive stuff, right now. I have often felt on the verge of seizuring as well, but have not yet. Though I feel like I have some sort of pseudo-seizure type episodes.
I do have the support of my husband; I'm so sorry you're battling this without that support. I have 3 kids, 18, 16 and 10. Last week, as I was literally in a pile on the floor crying uncontrollably, telling my husband that I wanted to give up and maybe I just needed to "check in" somewhere (psych ward or something)...it put my 16 and 10 year old into tears and feeling so scared for me; I hate this. I hate them seeing me like this and having them so frightened and scared for their mom.
Now...a few days later...I am feeling so much better. Certainly far from symptom free, but somewhat functional and stable. I am scared for when it all hits again, as it always does.
I am on Flagyl and IM Bicillin LA...I am hoping it was a herx and I will be improving, been treating for 2 years and still in the throws of it all. I know I need to be more diligent with detox. This disease feels like a full time job.
I tested + for Lyme and all co-infections along with various EBV, low thyroid....the usual Lyme related stuff.
You're not alone with these types of symptoms; let's hope it's a herx for you and some things will clear. I know Feelfit also relates to this, completely.
Keep up the fight; please PM me if you want to commiserate more. You're in my prayers, really.
Take Care....sorry for long post.
TS
Posts: 566 | From West Coast | Registered: May 2008
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