I had been off treatment for too long, due to multiple, unending insurance denials and treatment obstacles. I am now finally back to Babesia treatment, after having been off it for 1 1/2 years (!!!). My docs didn't want to treat it during that time : - (
I have slid down so far that recently I truly have felt that I was slipping below the waves and wasn't going to make it, being totally bed/couch-ridden, barely able to breathe, let alone sit up without passing out. I felt that I didn't have the strength to fight any longer.
I started back on Babs treatment last Friday or Sat. and probably should have ramped up a little more slowly. (Mepron & zith).
Now I have unrelenting nausea, head-banging migraines almost non-stop, feel like I'm suffocating (can't breathe), and tons of sweats. I had most of this already, except for the nausea, But it's all unbearable.
Plus, my blood tests came back with high direct bilirubin today (.4, normal, < .2). That is from hemolysis, I'm sure.
I went off treatment on Thursday to catch up, but . . .
My insurance sure wants me gone----in terms of the interminable denials, now of 4 meds at once, regardless of what my doctor says, "medically needed for life-threatening infections," "first-line treatment for Babesiosis," etc.
I'm not even sure what to ask here . . . I just am not sure that I am going to make it, after 10 years fighting all this since diagnosis, and decades fighting it before I knew what it was.
Posted by dbpei (Member # 33574) on :
I am so sorry Rumigirl. Hoping others here will chime in and give you the support you need. This is a dreadful disease.
You probably ramped up too quickly. Please let your doc know what you are going through. Can you manage an empsom salt bath? lemon water? detox tea? so sorry you are going through this.
Posted by seibertneurolyme (Member # 6416) on :
Rumigirl,
Received your emails. Will respond in the next couple of days.
Have been reading Buhner's new book. My suggestions -
The one thing Steve did not know to do while treating babs that I think is critical for all babs patients. --- Take l-arginine - 2000 mg 3 times per day.
While treating bart Steve took 500 mg of l-arginine either 2 or 3 times daily for 1.5 years - forget which - but we stopped this when we moved on to babs treatment.
Anyway - the l-arginine helps prevent the cytokine cascade and improves circulatory issues. I would start with 500 mg a couple of times daily and work up. According to Buhner the l-arginine is ok to take unless you have an active herpes infection (cold sores for example). Also may cause issues with blood sugar.
Milk thistle or other liver supporting herbs are essential as well. Dan shen - salvia miltiorrhiza is also helpful in my opinion. Hubby mixed the powdered herb with applesauce and took that for a couple of months during bart treatment.
Also in my opinion lumbrokinase is critical. Buhner suggests nattokinase and adult aspirin but in my opinion lumbrokinase might be more effective with less side effects - especially with long term treatment.
To flush out the liver - try tincture of greater celandine. Discussion regarding dose at link below.
Hubby's total bilirubin dropped from 1.36 to .66 overnight once when I used the celandine. This was when he restarted lariam after being off babs meds for 2 months (after the 14 months of continuous babs treatment).
He still ended up in the ER and hospital for a couple of days - with him his RBC and hemoglobin and platelets usually did not drop or kept dropping for 2 or 3 days after the bilirubin became elevated. This was while taking lariam once every 5 or 7 days. But he did not react to every dose - never knew when he would have a larger dieoff.
So sorry you are feeling so bad - but just remember that your reaction proves that Babesia is a very real piece of the puzzle for you.
Dr H responded to my question at a lyme conference last year by saying that Babesia treatment would get rid of air hunger and that he had never had a patient who developed ARDS - somewhat reassuring but not the answer I expected.
For the nausea and dry heaves and vomiting hubby was unable to get off Phenergan and took that continuously for the last 4 years I think it was. But his nausea became much worse within 2 or 3 days of stopping malarone the times he tried to pulse that med. So hopefully your nausea will let up soon - I think it will decrease as your bilirubin goes down.
Bea Seibert
[ 03-21-2015, 08:39 AM: Message edited by: seibertneurolyme ]
Posted by seibertneurolyme (Member # 6416) on :
If you are already taking lumbrokinase then I would increase the dose for a few days to possibly help with the headaches. Hubby could tell a big difference when taking 6 capsules daily versus 4 capsules daily. You could try either 2 capsules 3 times daily or 3 capsules twice daily to see which dosing helps the most.
Bea Seibert
Posted by MannaMe (Member # 33330) on :
Would burbur help with the herx?
Posted by Rumigirl (Member # 15091) on :
Oh, Bea, you're invaluable!!!
I remember your having spoken about the l-arginine before, but was always afraid to take it, because I get frequent, horrible herpes out-breaks. But I think I should try it, and stop if and when I get an outbreak.
Is there any particular brand/source of lumbrokinase? And where do you get the greater celandine and Dan shen - salvia miltiorrhiza??
Who but you would know all of this?? I know a lot, but . . you have been tested by fire in the Babesia/TBD wars!
I avoid the ER like the plague----they are useless, and also quite dangerous for us TBD patients, due to the docs wanting to know who is your doc, etc. in ways that could endanger them severely.
My current doc is in a multi=year investigation by the State Medical Board for the THIRD time!!! If I ever did go to the ER again, I would completely avoid the "L" word and mentioning my TBD meds and my TBD doctor.
But in the meantime, I just tough it out all the time. Of course, you and Steve didn't even have that option, things were so dire. It still makes me furious to think of what happened to you both. I can only imagine how you feel.
Posted by Rumigirl (Member # 15091) on :
On the lumbrokinase, I have Serra Peptase, and I wonder if that would help while I order lumbrokinase---or if I should just get it locally. They both do similar things. I don't know if the lumbrokinase is stronger in effect.
Haven't been able to get the lumbrokinase locally, so will order it, & will use the serrapeptase in the meantime.
I never tolerated any systemic enzymes before, like serrapeptase, etc. I always get horribly allergic (explosive non-stop sneezing, nose and eyes running, bad gas, etc. I am way too alkaline already. But I will try it with timed-release hcl, etc. Yeesh!! I'm between a rock & a hard place!
[ 03-21-2015, 07:02 PM: Message edited by: Rumigirl ]
Posted by Rumigirl (Member # 15091) on :
dbpei, I do have Burbur and could try that. However, these symptoms are industrial grade. They have really felt like I could easily die of it (not just the herx, the symptoms of the infections themselves). But the die-off really puts me over the edge.
I have been doing coffee enemas a lot, which helps a lot and will do a Liver Flush tomorrow.
Posted by seibertneurolyme (Member # 6416) on :
Dan shen powdered herb is available from 1st Chinese Herbs as well as several other places. Or tincture from Mountain Rose Herbs and several other places.
The greater celandine tincture is Herb Pharm brand - Available from many places such as Lucky Vitamin, iHerb, HerbsPro etc. Probably vitacost also.
Allergy Research brand of lumbrokinase is available from VitaCost. We always used ExtraBux or a similar rebate site for orders from Vitacost to get 4 or 5 percent rebate.
Hubby also took 5 Wobenzyme daily along with the lumbrokinase. I think nattokinase is the weakest then serapeptase then lumbrokinase is the strongest. I used to have a chart that compared the enzymes - will see if I can find it online again.
I think you could possibly take l-lysine for herpes if that is a problem issue - but would take the l-arginine and the l-lysine several hours apart. All amino acids should be taken on an empty stomach. Also all enzymes used for hypercoagulation/biofilm need to be taken on an empty stomach.
Hubby took a cheap brand of l-arginine - probably vitacost generic. I just bought myself a bottle of Nature's Bounty brand at local CVS store on their buy one get one free sale. Fifty 500 mg capsules was 8.99 but I got 100 for that price on the sale. I am taking it for cardiac function - have mildly elevated high blood pressure.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Rumigirl.. I'm so sorry you are so ill!! Hang in there!
Posted by k84 (Member # 32738) on :
Hang in there. I have been there, it's a horrible place to be. I've crawled my way back and escaped barely with my life.
Mepron, Malrone, and Zith all at once was/is my protocol.
My Igenex test for Babesia Duncani was 1280 (seriously).
I nearly died several times, and came very close to ARDS. At one point a CT scan showed "acute pulmonary edema" and couldn't even talk without out feeling so much air hunger that I felt like I was going to pass out.
Totally comprehend that nausea can be a symptom of babesia, but just a heads up, if your getting the generic version of Mepron they are not all created equal. The generic sold by Amneal Pharmaceuticals induces horrible nausea when I take it. I call it my "gut rot" generic mepron. The other available generics and brand name Mepron do not do this to me.
Posted by valeriedc (Member # 24950) on :
Keep breathing and be thankful Rumigirl. You have good treatment that is working! Just a bit too much for your body right now. Completely agree about ramping up-timing of the ramp up is critical and once I figured that out, it made a huge positive difference for me.
Posted by Rumigirl (Member # 15091) on :
k84, No, the Mepron I have is the brand name, partly because I already had some left over, and partly because my doc wrote "DAW," obviously, because he knew that the generic wasn't as good.
I'm surprised that my insurance authorized it, but they did. Doubt they would now.
The nausea is finally better, thanks to doing a lot of coffee enemas and going off treatment from Thurs to now. However, I really can't breathe and can't sit up without passing out----in spite of all my POTS meds.
Posted by Rumigirl (Member # 15091) on :
k84, No, the Mepron I have is the brand name, partly because I already had some left over, and partly because my doc wrote "DAW," obviously, because he knew that the generic wasn't as good.
I'm surprised that my insurance authorized it, but they did. Doubt they would now.
The nausea is finally better, thanks to doing a lot of coffee enemas and going off treatment from Thurs to now. However, I really can't breathe and can't sit up without passing out----in spite of all my POTS meds.
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