seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I met with my LLMD and he is switching my treatment protocol around a bit.
He's decided to use Mepron instead of Malarone for my Babesia. I am currently taking 1 Malarone tablet per day.
His Mepron dosing schedule is the following:
Day 1-3: 1/4 tsp Mepron 2x day; 1 Zith 250 mg tablet per day
Day 4-6 1/2 tsp Mepron 2x day; 1 Zith 250 mg tablet per day
Day 7-9 3/4 tsp Mepron 2x day; 1 Zith 250 mg tablet per day
Day 10-12: 1 tsp Mepron 2x day; 1 Zith 250 mg tablet per day
Day 13+: 1 tsp Mepron 2x day; 1 Zith 250 mg tablet twice per day
We discussed Clindamycin / Quinine, but he said it's way too toxic long-term and will not endorse it. We talked briefly about Art and he recommended 600 mg daily divided in doses.
I am REALLY hoping my insurance will cover the Mepron, but who knows. What am I in store for when I change from Malarone to Mepron? Do you think it may make me feel different?
I honestly have no idea which symptoms are babesia-related (or if I even have it) and which are Lyme. I continue to have muscle tightness, fatigue, some muscle pain, some shortness of breath, though greatly improved, etc.
I'm a little concerned about my Lyme protocol as I have 4-5 days of Clindamycin left (which he said to finish). He then wants me to go to Amoxicillin (not sure of the dose). I have to finish the Clindamycin before starting amoxicillin. He then wants me on amoxicillin, but I get the impression to do this before starting Mepron/Zith. I don't believe he wants me to take Zith/Amoxicillin and Mepron together.
I brought about minocycline, but he didn't have much good to say about it except for it costs a lot. He said his patients do better on Doxycycline. It seems like those on LN believe the opposite based on testimonials I've read and PMs I've received.
I talked about viral issues, but he said he refuses to treat them and said his patient base has never improved on anti-virals even with high levels. he said treating Lyme makes the viral issues disappear. He did recommend another physician who aggressively treats viral issues, but I can't afford to see any more doctors.
So what you all think? Particularly, has anyone been on Malarone and had litle improvement and then jumped to Mepron and noticed major change? If so, were the positive changes related to symptoms I have?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, mepron and zith was much stronger for me and a better babs treatment than only malarone.
It helped more in one month than five months on the malarone. But everyone can be different, and it depends how much malarone you take probably.
Posts: 2557 | From home | Registered: Aug 2006
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WildCondor
Unregistered
posted
Why are those doses so tiny!!!
it jumped right out at me as being ridiculous!
I took 3-4 teaspoons of Mepron daily for 6 months! yes, I started at 2 teaspoons per day, but that failed, so higher doses were needed.
the Zithromax was 600-1,200 mg/day! Plus Artemesia 3x per day
If you are on Malarone at the same time it might make some sense..but i don't understand that logic! (what is the one pill a day thing?)250 mg of Zithromax per day sounds like a really really BAD and WEAK dose. Maybe if you were a tiny baby this might have some effectiveness because your doses are so small. These are serious and nasty hard to treat germs you have, and you have to pummel them with sufficient doses or else you are not going to get anywhere.
Granted I don't know your case, but at first glance this appears NOT to be a LLMD, and to be considered UNDERTREATMENT.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well,
I don't know. I gotta be honest and say this whole scenario is getting me despressed. It's hard not to mentally toss in the towel. I told my LLMD how deperate I was, how I can't string 3 good days in a row, how badly I miss my old life, how I am unable to support my wife and daughter, etc.
This Mepron was in replacement of Malarone, not in addition. By the way, I don't know if body weight makes a difference with dosing, but I'm quite a bit heavier than the typical male my age. So it sounds like I'm getting a baby dose for even a normal child? Wonderful.
I'm not trying to beat a dead horse...I am just LOST. Everything people say on here conflicts with my LLMD's protocols. He just attended the ILADS conference in November. What is going on???
I'm getting to the point where I feel maybe I should pull the plug on my computer. These visits are costing me $220+, tons of gas, time off work for my family, etc. Trying to explain to my family that the treatment is not proper makes them even more upset at me. They're starting to think I'm a bumbling idiot and I spend too much time online.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Two teaspoons of Mep + 500 mgs of Zith is a decent dose. I started at that dose 3 weeks ago.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Seek,
I didn't mean you were beating a dead horse. I meant baby doses are to be expected....or at least the bare minimum.
Sorry if I bummed you out, I didn't mean to.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I understand Feelfit. I actually just PMed you explaining something. My LLMD did write the Zith for 250 mg 2x day on the script so I'll probably take that as that's what he had me on before. I just do not want to go back to Zith alone for Lyme. I'm really hoping it's Zith and Amoxicillin, but I'm not sure if that's the plan. I feel like we're going backwards, not forwards.
To date, no mention of a cyst buster either. Strange.....I thought that may be Rxed at month 5. Is that incorrect/
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
did you get the rx for amoxy too?
Posts: 3975 | From usa | Registered: Aug 2007
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WildCondor
Unregistered
posted
Hang in there. I know this is stressful and emotionally a nightmare. It will get better. I wanted you to know that your doses seem too low indeed. I don't know what your doctor has you starting at these tiny doses After 2 weeks you reach the starting dose of mepron which is 2 teaspoons per day. So...from there, my next question would be how long are you going to stay on that dose? Maybe he will increase it to 3x per day and bump the Zithromanx to atleast 600 mg/day, and then you can add Artemesia annua. Combination therapy is really important so you target all forms of the Lyme and treat the co-infections until they are dead and gone, and you have to go by symptoms. Treating with baby doses just prolongs the treatment...you can fry an egg slow or fast...up to you but IMHO, your LLMD sounds overly tentative in his approach.
Unplugging the computer=giving up, and that's not an option when you have to do everything you can to fight to get better. Keep reading, keep learning, and keep fighting. We've all been there and it's frustrating for sure. Stay Strong!
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I was in a similar position. My doctor was/is always changing my meds, doses, etc. Here's what I think between mepron and malarone.
Mepron for me has been much tougher then marlarone. Each person is different. Malarone might work better for you, but you only know if you try.
Malarone, zith, plaqunil is a tripple threat. Mino is not as strong as doxy (doesn't mean it's not as effective). If you have insurance there is no price difference to you doxy vs mino.
Marlarone and Mepron are both ridiculous if you don't have insurance like $1,000. If your insurance doesn't cover mepron and you can't get it then just tell him your insurance doesn't cover and you can't afford it. Doctor might have suggestion, know someone who you can contact etc.
As for viral infections in addition to lyme. My LLMD supects I have a viral infection in addition to lyme and babs. We were going to deal with it after the lyme and babs were killed, however it's preventing me from getting well. Now, she think part of the reason I am not well is because we neglected to treat it. I would reccommend Valtrex 3000mgs per day.
Also, see if you can get samples from your doctors. My LLMD and I decided to do a drug holiday after 3.5yrs of treatment. Mostly, because my mom said it's been a long time let's just see. My LLMD and I both were hesitant but I was starting a new job in July and so I said well what do I have to lose.
It's been 6 months now. In Sept I broke out in hives, then the headaches came back, then the chronic fatigue (horrible), then the chronic muscle spasms (so bad I can't hold down the pedal to drive), and now I am on the verge of vomitting everything I eat.
What did this teach me. That I am not going to stop meds for a very long time, with the possibility of a life-time. That I am still sick. That I am not making it up or just being lazy. I am sick, you are sick, figure out a way to maintain yourself so that you don't end up faced with disabiltiy like I will be in Jan.
I have been off meds so long that I can't even take one mino or I herx and can't get out of bed for 3 days. Do what you can and remember to just take it one month one doctors visit at a time.
Stopping meds will not help your family. Paying whatever it costs to get you well and functioning is what will help your family.
best, smiles
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Thanks everyone. Feelfit, I actually don't have the Amoxy script yet. For some reason, he wrote two Mepron scripts and forget the Amoxy.....hmmm. I think it was an oversight. They'll be mailing it.
I'm not going to quit trying. The issue is when it comes to having to paying out-of-pocket for Babesia meds, I'm in trouble. My wife will do a HUGE pushback. It's one thing to pay $40 co-pay, but she instantly says no way are we paying $1,000 for a med. It's just not an option to her.
With me to moving to another insurer on Jan 1st, that's my biggest feat. I just don't think she values treatment and the importance. She has not educated herself at all on this stuff and most likely never will so it's a real uphill battle for me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Do you think it's even worth filling this Mepron script given the dose?
I've been off Malarone 7-8 days now with no ill effects. I can't say I feel worse or better...the same.
I am very leary of getting off my Lyme Abx and seeing what happens.
How likely is it that I really have Babesia if I haven't seen major issues after being off Malarone (note it was only 1 tablet per day anyways)?
Filling a $1,000+ script for an inadequate dosing schedule seems so ludicrous.I do plan on taking 500 mg Zithromax daily the whole time.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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WildCondor
Unregistered
posted
Good to hear!!!
That is one of the reasons why I was suggesting the dose be higher! Tell your doctor to write you the full dose of Mepron, he/she can write it for 3-4 teaspoons per day and then you can take it as directed and it will cost you tons less $$$!!!
Also, ask about needy meds programs, and if a medication isn't covered by your insurance you can have your MD write them a letter of medical necessity, and it usually gets approved within a week.
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Is Babs herxing real? How many get herxing with this regimen? I know that I felt somewhat worse the first few weeks but have noticed some things that "seem" like improvements. I hate to use "improvement" casually because I haven't seen it in a while.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wildcondor, I just don't think it's worth asking my LLMD. I don't believe he'll agree. He'll think I'm trying to play doctor and reading too many Lyme books/forums. I think he'll take it as an insult. I have to believe he knows Dr. B's protocol and chooses to not follow it.
If me, a stupid patient, can find all this simple info, it's ignorant for me to believe a doctor doesn't read more, have more data available, more access to latest treatment protocols, etc.
I truly wish he would write for 4 tsp daily to save me money!!! You have no idea how much.
The bottle size he wrote for is 210 cc. Is that s small amount? The script says 750 mg / 5cc.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
/\ hoping for feedback on the bottle size Rxed...I don't know if the amount Rxed is more than his dosing schedule and there will be more leftover if I follow it?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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WildCondor
Unregistered
posted
Wow, asking him to write the prescription FOR THE CORRECT DOSES should not be a problem. If your doc has a problem in writing a Rx properly and not helping your life along by saving you thousands of dollars, then it's time to find a real LLMD, this one really sounds like a joke to me. Don't be afraid to stand up for yourself and ask for what you need!!!
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yeah, I'm frustrated. I just found out the plan is to be on only Zithromax 500 mg daily and the small dose Mepron for the month. Basically, I'm back to mono therspy for Lyme. Zith alone is what he had me on for 2+ months before I begged for a second Abx and got Omnicef. Now I'm back to one? The rationale is because Mepron is so strong.
I'm feeling like I'm looking at the '10-year' plan at this pace and will lose my home and not be able to support my family. Scary.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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DebAz
Unregistered
posted
Seek
I would ask your doc . (considering the cost) to write a script for a larger amount and have him trust you to take smaller amounts now with the goal of working up.
Otherwise you will waste a lot of money.
And do you have insurance?? My insurance covers Mepron at any amount for the same copay. I know I am one of the lucky ones..
Anyway.. As well. IN order to do well on mepron I had to take 4 5ml dosages a day with the zithromax.. 2 x aday.
Lower dosages did not cut it for me. But this drug was backwards for me .. weird.. The more I took the better I Felt..
And .. on other abx.. The more I take the worse I herx.. and so.
THe mepron herx was something totally different for me. I felt it though going through my body and I did have .. herx reactions.. but not the type that .. puts you flat on your back in agony. I just felt joint sharp pains and headaches and such.. and each week or two a different one.
It was interesting.. And I would like to do that reginmin again sometime.. It was only 3 months ago I stopped after about 5 months of it. or so.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
The 210-ml bottle is what I'm getting. It lasts about 3 weeks at a 2 tsp/day dose and I think costs about $1200 (I've heard it's as low as $800 in some places, though, so PLEASE call many pharmacies or look it up at pharmacychecker.com or another place like that before you fill it if insurance isn't involved).
GSK the manufacturer of Mepron has a patient assistance program for poor patients, please see the 'what do you do when you run out of money' thread at the top of this forum to see more details.
He's probably trying to avoid the hellish babesia herx that some people experience. I just raised my Mepron dosage and even though I've been treating for 3.5 months and am much much much improved, I still managed to experience a pretty nasty herx, so I can see (sort of) where he's coming from. I do'nt know if starting at minute doses really works though, most people don't take less than 1 tsp twice a day like I've been taking.
-------------------- Symptom Free!!! Thank you all!!!!
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
According to the package insert on Mepron, increasing the dose to more than one teaspoon 2 times a day does not result in a higher level of Mepron in the blood.
I don't know why Wild Condor is so adamant about a higher dose.
To get Mepron into your system, you do need to take a lot of fat with it. I use coconut cream, that's about 70% fat!!
Zithromax stays in the tissues for several days.
Best,
Cass A
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These visits are costing me $220+, tons of gas, time off work for my family, etc. Trying to explain to my family that the treatment is not proper makes them even more upset at me. They're starting to think I'm a bumbling idiot and I spend too much time online.
![[Smile]](smile.gif)
I think it was an oversight. They'll be mailing it.
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