It looks like my Babesia Tx comes to a screaching halt. After 1 week on Mepron/Zith, my ALT is up to 69 (normal is 18-47). My AST is up too at 38 (normal 18-35). Doc wants me off meds for a week to see if they go down.
What scares me more is I just found out today my ALT was elevated at 60 the day before I even started Mepron! My LLMD's office never bothered to even contact me to let me know..nice. I'm not happy about that. This is why I'm not a fan of out-of-state care and busy LLMD offices.
I've had perefectly normal liver enzymes since being on Abx 15 months ago. They seemed to have went up when I started Azithromcyin 15-20 days ago. I handled it fine for 5 months in '08. The got higher yet when adding Mepron and upping the dose of Zithromax.
The only other catch is I started some herbals my ART practicioner Rxed around 11/16 including Deseret Biological's EBV tincture. The doc said they were harmless????
My body is haywire. My doc said massive herx from Mepron/Zithromax and is lowering my dose once my enzymes return to normal (if they do). All of a sudden, my blood pressure readings are a minimum of 150/88 and today in the office 170/101. I'm scared. I was getting 130-140/80 before.
My doc also said Biaxin is a completely unacceptable replacement for Zithromax for Babs treatment as Biaxin doesn't go intracellular like Zithromax even though a macrolide.
I was suprised the doc thought herx. Also, last night ater I took 1.5 tsp of Mepron (2.5 tsp total for the day), I started itching like crazy. Herx, liver toxicity, allergic reaction to Mepron?
The highest I ever got on Zithromax was 1,000 mg daily and this was for 7 days.
Is it game over for me? Could my poor gallbladder make treatment impossible. My HIDA scan showed <15% election several times, but I have no other symptoms really.
What to do? Milk thistle? I stopped taking it due to Mepron. Keebler, we need you!!! lol.
Posted by psr1 (Member # 22957) on :
Hi there: My enzymes are more elevated than yours: neither my LLMD nor my PCP staid much about it til the current LLMD looked & said, Holy S***! Nobody has said anything about stopping treatment, however. Is that the standard procedure if they are elevated? Is it the meds that cause it or the disease?
Posted by seekhelp (Member # 15067) on :
I believe it's normal to get them down to not stress the liver anymore. As far as cause, who knows. The liver must be under tremendous stress processing all these toxins, drugs, etc.
Posted by seekhelp (Member # 15067) on :
How much milk thistle is taken daily? I don't think the high fat Mepron diet did me good.
Posted by KS (Member # 12549) on :
Not that my story is very helpful but when I was on IV Rocephin, my liver enzymes (all previously fine) jumped into the 800's. Obviously the doctors were concerned and I was immediately taken off of all medication. Within the first week it dropped way down (300s) but it took a couple of months for my liver enzymes to be normal again.
I wouldn't worry too much but obviously a hep panel and other potential liver issues should be ruled out.
Posted by TerryK (Member # 8552) on :
seek- No, it's not game over for your treatment. My liver enzymes have many times higher and once they went back to normal we resumed treatment.
Your numbers are not alarmingly high which is why your doctors office may not have contacted you immediately.
Mine were over 500 once and my rheumatologist wasn't concerned but my LLMD sure was.
Terry I'm not a doctor
Posted by seekhelp (Member # 15067) on :
Thanks everyone. I'm going to work big time on cleaning up my diet to avoid fatty liver. I have a feeling poor diet and Mepron fat requirements didn't help.
I can't believe how badly my muscles hurt now a day after Mepron. My right leg feels strained. Can these meds really damage that much?
[ 11-30-2009, 06:59 PM: Message edited by: seekhelp ]
Posted by JamesNYC (Member # 15793) on :
Seeks,
My liver was slightly elevated too when I got tested last month (I don't remember which test it was but I think the number was like 60). However, my LLMD's PA said that was nothing to be concerned about and to continue my plentiful abx.
I wonder why my LLMD doesn't think it's a big deal? (Maybe it was a different test? I doubt it though).
Posted by JamesNYC (Member # 15793) on :
Seeks,
Can you or anyone else here figure out WHY we think Mepron needs fat? The insert DOES NOT SAY THAT! Eating all the fat we're told to just isn't good.
I'd hate to keep eating it when that could be a misconception.
Posted by radfaraf (Member # 11909) on :
James what is this 'fatty liver' problem you mention?
Posted by JamesNYC (Member # 15793) on :
Rad,
Seeks mentions the fatty liver. I don't know what that is.
The insert for Mepron says that it's better absorbed with a meal and mentions the Kcal and fat content. And then concludes:
"Maximum plasma atovaquone concentration (Cmax) was 15.1 � 6.1 and 8.8 � 3.7 mcg/mL when atovaquone was administered with food and under fasting conditions, respectively."
Nowhere does it specifically mention fat as the critical component.
So, I wonder where we get the fat thing from.
James
Posted by seekhelp (Member # 15067) on :
I'd sure like to know JamesNYC because I DO NOT need extra fat calories one bit. it's been a bad experience. That with my lack of ability to exercise now is a horrendous combination. If Babesia doesn't get me, a heart attack will with that fat consumption.
I'm guessing our liver tests were the same ones. Your LLMD is well 20x more aggressive than the doc treating my Babesia. lol. I bet it takes a lot for your LLMD to tell a patient to halt.
i don't know if this is toxins, but I'm off all meds today and my body is KILLING me. Pain everywhere. I don't usually have this. Every muscle/bone is aching. I feel terrible. I hope Mepron didn't cause permanent problems.
[ 11-30-2009, 10:26 PM: Message edited by: seekhelp ]
Posted by JamesNYC (Member # 15793) on :
quote: In particular, fat has been shown to enhance absorption significantly.
Chuck, that is the first time I've seen this written. Where did you get it?
This is not what the Mepron insert says or the PDR. Both of those JUST say food increases the absorption.
If you click on Chuck's post on the word "FAT" it will also come up.
Posted by sammy (Member # 13952) on :
Seek, have you tried supplementing with NAC? It also supports liver function. Typical dose is 1,200-2,400mg per day.
Hopefully your liver will start feeling and functioning better soon!
Posted by sammy (Member # 13952) on :
Healthy fats like omega 3's, nuts(walnuts and almonds in particular), olive oil, and coconut oil will help you body heal. They will not cause "fatty liver disease".
Fatty liver disease is typically caused by excess alcohol consumption. It can also be caused by medications, high cholesterol, obesity, malnutrition, and insulin resistance to name a few (you can google more if you'd like).
Proper diet(avoiding sugar/ excess carbs) and exercise will help prevent and treat fatty liver disease. It will also bring down the risk factors such as high cholesterol.
Posted by JamesNYC (Member # 15793) on :
Kitty,
Thank you for that link. Now, here's an interesting paradox. That info was for Mepron TABLETS.
When I checked the same site for Mepron LIQUID, the info did NOT MENTION FAT!. It is NOT the same info!
Either the pharmacokinetics are different for tablets and liquid. Or no one has properly verified GSK's info. In other words, someone may have screwed up and no one has paid enough attention to catch it--UNTIL NOW!
I'm going to call GSK tomorrow and harass them. I have EARNED that right! My treatment has paid out over $35,000 for this stuff.
For tablets:
quote:The bioavailability of Mepron is increased approximately 3-fold when administered with meals. In particular, fat has been shown to enhance absorption significantly. In one study, 18 volunteers received a single dose of 500 mg Mepron after an overnight fast and following a breakfast (23 g fat: 642 kCal). The mean (�SD) AUC values were 93.8�45.7 and 288�77 hr μg/mL, under fasting and fed conditions, respectively.
For Liquid:
quote: Administering atovaquone with food enhances its absorption by approximately 2 fold. In one study, 16 healthy volunteers received a single dose of 750 mg Mepron Suspension after an overnight fast and following a standard breakfast (23 g fat: 610 kCal). The mean (�SD) area under the concentration-time curve (AUC) values were 324 � 115 and 801 � 320 hr●mcg/mL under fasting and fed conditions, respectively, representing a 2.6 � 1.0-fold increase.
Posted by Lymetoo (Member # 743) on :
Good find, James! Keep us posted!
Posted by Tincup (Member # 5829) on :
Just eat ice cream and enjoy!
Posted by Tincup (Member # 5829) on :
Oh seek, so you ARE herxing!!!!! OK.
You didn't mention that in the other post. Muscles will hurt and you'll feel quite badly when you herx.
The liver counts are not bad at all. It is the herxing that made him pull you off the meds perhaps?
Now it is starting to make sense.
Posted by seekhelp (Member # 15067) on :
James, I look forward to hearing what GSK says. Please let us all know. i really did like the peanut butter ice cream and hohos though. lol.
Sammy, I used to take NAC, but stopped because the smell sickens me. Also, I don't think I handle sulfur well. I did horrid on Bactrim DS. I took milk thistle religiously until Mepron, but obviously had to go off of it.
TC, my doc planned on stopping meds for only a few days until I found out my liver enzymes are up. Then the hold period got increased. I think LLMDs are MUCH MUCH more willing to bend the rulebook than conventional docs on allowing elevated liver enzymes and other stuff. Fear gets to them. THis may be for good reason.
I'm thankful to hear my numbers aren't as bad as I suspected. The report said critically high so I freaked with my ALT at that level. 800+ as another poster here said would be death high. lol.
All I know from this experience is treating long distance makes me very uncomfortable. The more I think about it, the more I can see a LLMD hurting someone badly. I hope it never happens, but it seems inevitable. I realize we have little choice given the environment we deal with.
An ART practicioner I'm consulting with told me supplements never ever increase your liver enzymes and only help. The ones I'm on are more for kidney drainage and hypercoagulation and homeopathics. is this true in your opinion?
Posted by JamesNYC (Member # 15793) on :
Clarification:
My insurance company spent $35K on mepron not me. It is costing me $300 a month, it costs my insurance co. a lot more.
Posted by JamesNYC (Member # 15793) on :
TC,
Yeah, it's a great reason for eating ice cream. BUT, I think the consequences of eating all those calories will be harsh later down the road.
I cannot believe you like your bellboys fat! Posted by JamesNYC (Member # 15793) on :
I'm on the phone with GSK right now. I'm making the poor nurse sweat. LOL
Posted by JamesNYC (Member # 15793) on :
Okay,
Straight from the horses mouth.
After making the nurse go for more info, I was told the following: That fat DOES improve absorption of Mepron. But the amount in the insert is "just" a guideline used in the study. The real point is that a substantial meal containing fat is important, but it DOES NOT have to be as much as 23g or 600kcal.
(She realized that she'd have to go for help when I asked if a 300Kcal meal of peanut butter would be adequate, or did there need to be more calories! LOL )
How much? They don't know. But when I asked if that meant that a decent sized meal containing SOME fat would be adequate, I was told yes. I would take that to mean that 15 or so grams of fat would be enough.
Bottom Line: Don't worry too much about hitting 23g of fat. Eat a meal with SOME fat, and it will do it's job. 600Kcal of pasta isn't gonna do it. Neither will 4 tbs of peanut butter. BUT I guess peanut butter on pasta would!
I should have recorded the conversation, but I thought about that too late.
Interestingly, Mepron Tablets are not sold in the US and she could not give info on them. I did trip her up when I read the insert for Malarone and it mentioned fat specifically too.
I hope that helps clear up things, it does for me. I can cut back on my fat-kcal intake!
James
[ 12-02-2009, 02:44 PM: Message edited by: JamesNYC ]
Posted by TerryK (Member # 8552) on :
Seek wrote: An ART practicioner I'm consulting with told me supplements never ever increase your liver enzymes and only help. The ones I'm on are more for kidney drainage and hypercoagulation and homeopathics. is this true in your opinion?
NO!!! That is an irresponsible statment in my opinion. You can thin your blood too much with supplements for hypercoagulation. Look for easy bruising and double check your prescriptions for interactions.
You can mobilize toxins and re-distribute them causing all kinds of deleterious effects and there are many other similar problems that supplements can cause.
We believe that artemesinin was the cause for my elevated enzymes of 500+. It is an OTC supplement. Supplements are not benign.
Homeopathics are safe in general (possibly with the exception of nosodes for certain bacteria such as lyme), but I do know someone who feels that her bells palsey was activated with homeopathics.
regarding the fat needed for liquid mepron:
Several years ago I called and talked to a GSK pharmacist about the liquid mepron fat requirement. She verified that fat is needed for absorption. Several other people called around that time and got the same answer. I would talk to the pharmacist rather than the nurse.
Terry I'm not a doctor
[ 12-02-2009, 04:18 PM: Message edited by: TerryK ]
Posted by JamesNYC (Member # 15793) on :
Terry,
The issue wasn't weather fat was necessary, but HOW much fat. 23g is a LOT of fat, and that's what many people believed was the appropriate amount.
What I confirmed was that 23g was not necessary, and much less will have the same effect.
Also, notice that the comparison with a meal is against an EMPTY stomach. It is not known how much better a meal with fat would be over a pure carb meal.
I could only get to a nurse, she asked someone for more info, it could well have been a pharmacist.
Maybe I'll call again and hassle them some more. I've drunk like 40 bottles of this stuff! And I ain't done yet!
Posted by Jeff S. (Member # 21361) on :
I also showed high liver enzymes on recent blood testing. My LLMD immediately put me on NAC and Milk Thistle. My levels returned to the normal range in less than one month. He had strong confidence they would work and allowed me to stay on meds during this period. He was right. Go for it!
Posted by TerryK (Member # 8552) on :
Yes, I have the same question James. How much fat? I don't believe you will get a definitive answer because I don't think they know from what I was told.
I was paying for most of my mepron myself so I wasn't about to cut the fat down and take any chances of having it work less effeciently.
I'm on malarone now and still eating the fat. I really dislike it because I can't keep my calories down to the 1200 per day that I need to eat when I have to eat fat 2X's per day. I want to get rid of this beast.
I'll be interested to see if they will give you a lower number.
Terry
Posted by JamesNYC (Member # 15793) on :
Terry,
You paid for the Mepron out of pocket? OUCH! Yeah, I can see where you'd make sure you ate enough fat to absorb every last bit of it!
Chuck,
I'm not sure why you have reposted that info. I posted the comparison between tabs and liquid earlier. They don't sell tabs in US, but the insert for Malarone also specifies fat. One might infer that that tabs need fat more than the liquid.
Posted by seekhelp (Member # 15067) on :
Ouch, one week later and no budge in my liver enzymes. Doc's holding off my treatment again until they go down. I'm a bit scared and irritated.
Posted by sammy (Member # 13952) on :
Bummer seek. I'm sorry to hear the news. I would be scared and upset too.
I'll be praying for you. That your liver will heal quickly and your body will benefit from this time of rest.
Posted by seekhelp (Member # 15067) on :
I've been on Milk Thistle too the week I was off. How much milk thistle extract do some of you usually take daily? I have 180 mg capsules. I waa taking 2 per day.
Maybe I'll have to take NAC again. I ran out.
I'm just praying the Azithromycin didn't cause permanent damage. I never hit above 1,000 mg daily and usually was at the 500-750 mg mark.
The other thing I started taking before this started was Deseret Biologicals EBV drops. Is that even possible water could cause elevated liver enzymes? I can't dare tell my conventional doc I took that or he'll think I'm whacko.
I have a bad gallbladder too, but the doc didn't seem to think it's relevant or listen to that commemnt.
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After 1 week on Mepron/Zith, my ALT is up to 69 (normal is 18-47). My AST is up too at 38 (normal 18-35). Doc wants me off meds for a week to see if they go down. ![[Cool]](cool.gif)
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