Topic: The Worst I've Ever Been.. Need some advice !!
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I'm 55 days into the IVIG and I have been on nothing since I got it. I don't know if I'm stuck in a constant Herx or I just got worse. I thought if it were the IVIG, things would have let up a bit by now, but I'm just 15 days past the half life.
I feel like I'm in a constant Herx, but how do I know for sure except to say I know my own body and this is real bad.
My head feels like Encephalitis despite the negative MRI. It's zapping and tingly and it hurts so bad. Even Percocet doesn't do much.
Brain fog is never ending. My neck is stiff as a board.
My body is aching like it never has, I'm running a low grade fever ever since the IVIG every day and never before the IVIG. Fatigued as can be.
My WBC count is up and never before. My Neutrophil count is up and never before the IVIG. I don't whats going on with this Epstein Barr Virus. My PCP says my labs say I was exposed, but the chart says otherwise.
If I walk across the room, my anxiety shoots through the roof and I get so out of breath.
Dysequilibrium continues and the only real symptom I had daily before the IVIG.
Supplements are doing squat now. Coffee enemas and epsom salt baths arn't doing much either.
I cry at the drop of a hat multiple times per day.
None of this stuff did I have before the IVIG and if I did, it was not as intense as it is now.
My poor father has had to watch his son waste away to this and I f/u with my Neuro doc. tomorrow who ordered the IVIG. He knows about the great debate and has seen Under our Skin. I know that he will not know what to make of this, but my father emailed him in advance and says he wants me admitted as he thinks I have Lyme, West Nile Virus, or some kind of neuro raging infection and can't take it watching his son in so much pain and agony.
I have been stoic through all of this, but it is really biting me bad now folks.
I find it hard to believe I'm the only one to ever Herx on IVIG, but I have to say it certainly feels like it. I wish there were a way to turn this off. The Pharmacist told me it takes 4-5 half lives to get it out of me, which equates to 160-200 days, which would mean I'm just 25% into it.
If the Neuro doc. admits me, what will he do ? IV ABX ? If I'm Herxing now, abx will likely kill me. So scared and need some direction.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Didn't someone here mention a possible way to get the IVIG out of your system? I'm sorry, but I don't recall what that was. I'd seriously consider it.
I really wish I had better advice and am so sorry you're dealing with so much. I'd seriously seriously seriously try to get on some form of Abx if you think it's a brain infection as Bea has said many times.
Also, didn't you say you got back on salt/C again? Stop perhaps?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I tried a few grams about 2 weeks ago, but I Herxed almost immediately from it, or should I say I got worse, so I backed off immediately.
I will ask the Neuro doc. about Plasmapheresis, that was the suggestion, but I don't know how that works.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
Lymetwister I am thinking of you. I never did IVIG and don't know how the herx is from it but it seems that we're all slightly different and 55 days without improvement seems too long. Perhaps your body doesn't like it.
I found the herx from IV roc to be hell but it started to improve around week 5.
Maybe a change of meds won't kill you but will be what the dr recommends and will help.
Also, weren't you posting a few improvements (especially mornings;) several days ago?
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
LT,
I think that you are having symptoms of Bartonella too. But I also think that the IVIG is assisting you at killing this crap and you are probably full of neuro-toxins.
I think that your nurse friend was absolutely right in her assessment of a 'cyto storm'. These can be very dangerous....too many toxins released at once. It seems to me that your body isn't keeping up.
I don't know what the anecdote is, but hopefully your neuro has something to add tomorrow.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
If your doc would order the test a brain SPECT scan would tell you a lot. And of course there is the option of a spinal tap.
I know it is not what you want to hear, but you most likely only have encephalopathy and not actual encephalitis or meningitis. Encephalopathy is basically a low grade brain infection that is a CLINICAL DIAGNOSIS. This is a common Lyme and tick-borne patient symptom that is usually not officially diagnosed.
You posted a link to cytokine storm recently. You may not have noticed but one of the treatments listed was free radical scavengers which means antioxidants. This is something you can do for yourself without a prescription.
High doses of the good fats, vitamin E and C, CoQ10 and pycnogenol are all good starting points.
Personally I would add in small doses of blood thinners such as lumbrokinase or systemic enzymes such as Wobenzyme or Vitalzym.
Here is a link to nutritional treatment for meningitis. It lists a couple of other possible supplements such as lactoferrin.
Depending on your doc you might get admitted to the hospital, but more often than not that would only be for observation and you would not actually get any antibiotics unless tests proved beyond question that you actually do have encephalitis or meningitis.
Are you having confusion or severe light or sound sensitivity? Those are the most common indications for a more acute illness.
I remember reading an article in the Public Health Alert where Dr S in Florida was promoting his newest book (hasn't actually been published yet). Anyway he listed the top ten or so reasons tickborne patients do not get well.
One of his reasons was "Poor insight". At the time I didn't really think that needed to be on the list. I don't mean to be rude or harsh, but I think you fit into this category. You are stuck on the one idea -- IV IgG caused all your problems. Even if that were true, you need to move on and deal with the current situation instead of sit back and wait for things to get better. Even you admit that that is not happening.
As for a cytokine storm -- maybe that did initially occur. But even that would have been long over from what I understand. That is a very severe and accute reaction which usually requires immediate intervention or at least lessens in severity over time.
I wish you luck at your appointment tomorrow. But I personally don't see your situation changing unless you change your approach and that includes either antibiotics or very strong killing herbs.
I will be taking a break from LymeNet for a couple of months while I deal with some personal issues, but I will keep you in my thoughts and prayers.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I just did 1gm of IV Glutathione followed by a coffee enema and got some, not a ton of relief. Would this confirm a Herx ? I had given up on coffee enemas as I wasn't getting relief as of lately. The last one I did was about 2 weeks ago, but was doing them daily before that.
I save the Glutathione for when things get really bad.
To answer the above, I'm not sure if any of this was Cytokine storm or not. I was just restating what the Clinical Specialist said to me.
I'm not stuck on one thing, but I can make a direct correlation between getting real bad and the IVIG. So many things have happened to me since getting the IVIG that have never happened before.
I want to treat at all costs, but when you feel like I have been feeling, your scared to put anything in you including IV Glutathione. I only did it as a last resort as if I get admitted, I might wind up from the Neuro floor to the Psych unit, and that would not be good.
My head is much clearer now even clearer then when I started this response. I get so confused with this stuff.
If I didn't have the IVIG in me, I would be doing Rife and Salt/C and even IV Abx perhaps. If the Neurologist decides on the abx I will do them. I can always pull back on them if things get bad.
Thats the problem I have restated over and over again. You can't pull back on the IVIG once it's in you. Please don't take me wrong as I am very confused as to what is what right now.
LT
Posts: 1227 | From District of Columbia | Registered: Mar 2009
| IP: Logged |
posted
Perhaps Alkaseltzer Gold can give temporary relief. It helps me with my NeuroLyme herx's.
Too bad 'C' makes you herx further as 10,000 mg 'C' powder in water helps dump your bile and empty toxins for a few hours.
Sure sound like an excessive herx, or maybe an allergy to the medicine. I once had multiple chemical sensitivity, but when I stopped using Ambian, this cleared up in 6-8 weeks.
You are in my prayers. Grace
Posts: 212 | From Arizona | Registered: Jul 2008
| IP: Logged |
When I asked if you were confused, I should have been more specific. I meant were you mentally alert and functional. You know your name and aren't babbling nonsense words etc.
Actually you seem very intelligent. I think the main issue is if I remember correctly you are seeing a University doc -- can't remember if it is a neuro doc or an infectious disease doc.
The main problem with that is that unlike an LLMD who only sees tickborne patients University docs take a more academic approach. It is great that your doc knows about the controversy surrounding Lyme treatment. But given their training they will naturally rely mostly on tests and not be as open to clinical diagnosis and treatment based solely on symptoms.
Neuropsych testing could be used to help pinpoint a diagnosis of encephalopathy.
Also one test that I can't understand why it isn't utilized more is the lipid peroxide test. Since your brain is 50 percent fat if a lipid peroxide test is elevated then you can be pretty sure you have a brain infection and are burning up brain cells.
Genova Diagnostics includes the lipid peroxide test in the functional detox panel -- cost is less than $200 I think. Also will measure CoQ10 levels and status of Phase 1 and Phase 2 detox pathways all in the same test panel.
Hubby has been extremely sensitive to antibiotics and for the first 4 years or so of treatment basically herxed with every dose. Depending on the half life of the med he would have a reaction (seizure-like episode) almost like clockwork to just about every dose of meds or killing herbs if they were working.
And things really went crazy in 2007 when we started trying to treat bartonella or BLO or mycoplasma or whatever mystery pathogen he has. Has been very much up and down since then.
The reaction you had to the IV IgG may in fact have been a cytokine storm or severe herx, but from what I have seen with hubby and other patients once the brain and central nervous system gets activated to the extent yours is just about the only thing that will improve matters is to continue with treatment (antibiotics or herbs) as tolerated. A wait and see approach usually just results in progressive symptomatology.
I just hate to see you go through so much without any real forward progress because hubby has been there and I know how bad things can get.
Brandimc,
IV IgG is gamma globulin. It is an immune system booster or immune system modulator. Extremely expensive treatment because each dose requires something like 10,000 blood donors I think to make up the dose.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Could it be possible that you have too much active infection for IVIG?
From what I've seen, and from what my doc says, most who do well with IVIG have beaten their infectious loads quite a bit, but have gotten to a place where they are very reactive to everything: meds, chemicals, foods, etc., and seem to be going autoimmune. IVIG is usually a last step. Like that nurse said, it may -- and I have no idea if this is happening -- be making your immune sys hyper vigilant, ending up with nasty cytokine reactions.
You may do better by knocking your bug load down first.
Just an idea.
Either way, I hope you improve soon. You have been living a terrible hell.
PS -- Regarding your other parasite thread, I've had similar translucent blobs of whatever come out of me.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
I'd seriously seriously seriously try to get on some form of Abx if you think it's a brain infection as Bea has said many times.
Printer-friendly view of this topic