posted
Hubby was able to schedule a quick followup appointment with his new LLMD after his recent hospitalization.
Not totally surprised with the outcome of his appointment, but very frustrated and discouraged. Going into the appointment hubby and I had already decided that if the docs would not agree to continue meds to treat serratia beyond 21 days (prescribed by the hospitlaist) that we would have to look elsewhere for medical care.
Not only did the doc refuse to extend the treatment, but they refused to write orders to replace the PICC line in the future or to install a port. The bottom line was that if hubby wants IV treatment they could refer him to another doc. No more IV meds from the doc ever. It looks like we wasted our new patient expensive office visit for nothing. We had waited several months to see the doc and when hubby had a problem with their protocol they no longer want him as a patient.
We can continue seeing them for oral meds, but why pay their inflated fees and have the extra travel expense of 1 or 2 nights in a hotel every month or so when the previous LLMD can do the same thing, plus is more open minded regarding herbs and testing.
Even the hospitalist agreed that hubby should probably continue treating for serratia as long as he continues the aggressive babesia meds. Since the PICC line culture was negative (again) there is no way to absolutely prove 100% whether the infection is sequestered or whether he is being continually reinfected.
All I know is that when he continued taking the serratia meds for an extra 30 days (prescribed by the prior LLMD) he did not have any of the high fever spikes. He did continue receiving IV meds most of the time but only 1 time daily rather than the 3 times daily when he was on the previous babesia protocol. So it is not like he just stopped doing IV�s and the serratia issue stopped.
But the 2nd babesia protocol which included lariam was not as aggressive as the 1st babesia protocol of quinine and clindamycin. The 3rd protocol involved pulsing extremely high doses of babesia meds plus IV Doxycycline � I would consider it the most aggressive protocol of the 3. And this time depending on the doc and the definition used his serratia infection actually went into sepsis and was not just bacteremia. The infectious bloodwork was definitely worse, but at the same time the RBC hemolysis was the worst it has ever been.
So now hubby has no PICC line and his prior LLMD who we hope will take him back as a patient cannot write scrips for IV meds due to medical board issues.
I am just getting really tired of all the roadblocks. It is not like we haven�t tried orals or we are the only ones who think he needs IV meds. The last LLMD neuro felt that he needed to continue IV meds indefinitely and put that in writing.
We did finally finish up the last few doses of IV flagyl before starting babesia protocol number 3. And as in the past every dose of IV flagyl causes a mild fever spike. But the med temporarily makes hubby feel good. He says it gets into a part of his brain that nothing else seems to touch.
If the old LLMD is willing we are going to try switching hubby�s oral minocycline to oral doxycycline in a couple of weeks to see if he gets any kind of strange reaction to the doxy since that is what seemed to cause the fever spike.
Serratia is one of those bacteria that can go anywhere in the body. I am almost beginning to think that it is sequestered in hubby�s brain and that that is why he had such bad reactions to the flagyl and doxycycline. Serratia can cause meningitis among many other types of infections.
Hubby has bounced back from the hospitalization better than I thought he would. He is really upset though that the doc was unwilling to at the very least write an extra scrip for either cipro or levaquin to cover the serratia infection beyond the 21 days. It is not like he hasn�t been on both meds before and fortunately he has never had tendon issues. I am going to reorder some coptis (herb) which supposedly treats serratia and put him back on that as well.
So far the daily low grade fevers continue and we still don�t know if they are from serratia or babesia. I really don�t think hubby and I are being unreasonable to expect the doc to take this issue more seriously.
For now he is on a modified babesia protocol of malarone, artemisinin, lariam and diflucan. Plus the levaquin for serratia and minocycline for lyme. The pulsing has been changed back to daily dosing for the malarone and diflucan and minocycline. Lariam once weekly and artemisinin remains MWF only. But the overall protocol is supposed to be 2 weeks on and 1 week off. We will see in 2 weeks whether that seems reasonable or not.
I put hubby back on dandelion root in addition to the milk thistle he has always been on and his liver enzymes are almost back to normal. His WBC is high normal at 9.2 and RBC and hematocrit and hemoglobin and platelets are all improving. The new docs would not write orders to test LDH or sed rate � both are non specific markers (for hemolysis and inflammation). But since they have recently been elevated in my mind it makes sense to at least monitor them on a monthly basis as the prior LLMD was doing. If for no other reason than it is reassuring to the patient to see improvement in test results which hopefully correlates with improvement in symptoms.
That�s about it for now. I guess I just needed to vent a little.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Bea-sorry you are going thru all this (again)
However, I noticed you were putting your husband on milk thistle-you can't take milk thistle with mepron-not sure about malarone, but I know they are similar
Posts: 1276 | From maryland | Registered: Jan 2009
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I know some docs think milk thistle and mepron or malarone should not be taken together, but actually hubby's new LLMD's suggested the milk thistle as one of the few supplements we discussed. They never got around to reviewing the supplement list I provided them.
Also, hubby's liver enzymes always go up when he takes artemisinin above a very small dose.
He was off the milk tistle for several months actually, but I did add it back when his liver enzymes started going up with the higher doses of artemisinin. Personally I think the milk thistle would not interfere to a significant degree -- or at least hubby definitely herxes at the higher doses of meds so we will probably continue with that herb.
But thanks for pointing out the possible interaction. It is good to know the potential problems and then a person just has to make their own choices especially when there is conflicting info.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Dear Bea-
I honestly can't make my way through many, much less all the details you;'re posting here about your DH.
Just amazed by and loving you that your heart and mind are still all the way there for your hubby, so many years and heartaches later. Seriously, you are one of a kind.
May you be rewarded-- with peace of heart-- for all you've done and are doing.
hugs, Dill
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Gosh, plenty of roadblocks for sure, what a shame to know of stuff that can work but not have access to it!
Have you considered homeopathy for the serratia? I know some places can make homeopathic remedies of the specific bugs. Just an idea to toss out, don't know if it makes sense in this case.
Posts: 1927 | From se usa | Registered: Mar 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I"m on high dose malarone and also take milk thistle. No issues with my liver and I get my bloodwork done every 2 weeks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This is disappointing. I don't understand why so many doctors are afraid/unwilling to do what is necessary to help.
Posts: 5237 | From here | Registered: Nov 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bea, my old famous NY LLMD's office had no issues with Milk Thistle and Malarone at the same time.
I'm sorry to hear of his continued problems to get care. Sadly, I can sort of understand the doc's fear given the complexity and high ER visit frequency. However, the other side of the coin is scary too. They're probably scared to death of something real scary happening.
By the way, who was this new LLMD with the disappointing outcome? Feel free to PM me with the name. Just curious.
Best of luck as always to both of you.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I have no great words of wisdom....but I am sorry you both are going thru this. I will pray for you and hubby. Sometimes doors close because there is a better one waiting to open.
Hugs
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Sorry for all the roadblocks. I hope things turn around in a good way soon.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
I know what you mean. Have no idea anymore where I could go for help.
Posts: 8430 | From Not available | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
So sorry to hear this Bea. Did they give you any reason for thier decisions? As others have said, I think it is probably fear but it would be good to know what reason they gave.
Sammy wrote: I don't understand why so many doctors are afraid/unwilling to do what is necessary to help.
They are afraid of facing the loss of their livelihood. Also of going bankrupt trying to defend themselves. Their fears are not unfounded. Also, there are risks to the patient with IV's. Sepsis can kill. Of course so can infection.
I fly to a State where my doctor is protected by law. Unfortunately that may be what has to happen sometimes in order to get help.
Keeping my fingers crossed that you get someone who can help Steve.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I really don't mean to be negative, but the ironic thing is the reason for not continuing IV treatment was because Steve had had a PICC line in place for over 8 years and they had never had a patient that had had PICC lines for that long.
But this particular office knew about the length of time the line had been in plus all the details of the recent hospitalizations a week prior to the initial appointment and they went ahead and prescribed the IV doxycycline. This doc probably has the most complete history on hubby of any doc we have seen.
We were impressed that they had obviously actually reviewed many of the forms we completed and looked at the medical records we sent before the initial new patient appointment. So it was not a surprise that hubby was a somewhat complex patient with a long history.
From our perspective the big mistake we made is assuming that the serratia issue was resolved because hubby had had a normal WBC for almost 2 months and he had had no high fever spikes in 3 months so he was not on any meds or herbs which would have worked against serratia.
Hubby is convinced that it was the addition of the IV meds (flagyl and doxycycline) which are both very good at penetrating the blood brain barrier that brought the serratia out of hiding.
Also, IV Rocephin does have some action against serratia although it is not as good as the fluroquinolones. That could help to explain why hubby did so well on that med plus the fact that we were not treating babesia at the time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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