Friday, August 15, 2008

Some people are really sick!

Sometimes I don't know what to do. A patient in his late 50s is dying before my eyes. He has had Lyme for 5 years (that we know of). He is barely functioning. His MRI shows extensive brain damage which the radiology says is compatible with Lyme disease. All 13 standard WB Lyme bands are positive. His C6 peptide index is off the charts. He watched his mother die from Alzheimer's disease and knows he is suffering the same fate. He has seen numerous doctors in the past. He has taken courses of Rocephin to no avail. I have tried everything I know and then some. He can't afford a second opinion with a world renown Lyme doc. I am it. Finally I tried a very aggressive approach using 3 intraveous drugs: Rocephin, Zithromax and Flagyl. For the first time he was showing some progress. For the first time he told me he was cautiously optimistic. His energy level was improving and his pain was improving. His cognitive issues were even perhaps a little better. The insurance company cut him off after two months. This treatment is not approved for Lyme disease they told him. He rapidly relapsed and quickly returned to his prior state. He needs a lot more treatment. He can't afford it. He is trying to keep his business (which is failing) and his family going. Every day it takes heroic courage for him to get out of bed, put his shoes on and with unbowed, indomitable determination, push through yet another day. He is dying. We, yes all of us, have given him a death sentence. We have stood by and allowed arrogance, greed, ignorance, pseudo-science, politics and professional bellicosity rule the day. I think about him often. I worry and I fret. There is nothing I can do. Perhaps readers of this blog can help me make a difference. Perhaps nothing ultimately can make a difference for this patient. Perhaps it is already too late. But I am a fighter. I learned it from my Dad- a great physician-who remains my greatest mentor, may he rest in peace. This suffering soul should at least be given a chance. Medicine is about caring; but is also about fighting and hope: fighting for our patients and keeping the embers of hope alive; and never giving up until the fat lady sings. Thanks Dad!

14 comments:

sequoia said...

Many people have been cut off by insurance and still continued treatment. But they don't use infusion companies to do the whole thing because it is too expensive. Some buy the drugs themselves at discount places like Costco, get generics. Then shop around for supplies to get a good price. Don't know what kind of catheter he has, but some people have been taught to change their own dressings.

Support groups are a good place to learn all the coping techniques that might allow people to continue treatment, even if cut off by insurance.

And there is an infusion company that has a lot of lyme patients and will ship. Don't want to post the name here, but will get it to you another way.

finrussak said...

reach out to your LLMD colleagues!! some have become "bulldogs" and will show you how to fight insurance issues etc. If you need a few names please email me privately--Ive been a Lymie and Lyme pt advocate for over 18 yrs now--was one of the original members of the LDANJ now LDA.
Im at mdjunction/lyme username fin24

also many at www.lymeneteurope.org have been in the trenches for years and can offer sound advice!

lindalane said...

LymeMD: Hang in there - stay strong - your patients are depending upon you and your courage. I am from across the river in Loudoun County. Thankfully, my doctor is Lyme literate, and I have every hope that I will get better with time. Thank you for writing your thoughts down. It helps all who struggle and those who need to listen. I am sure your father is cheering you on, and proud of your fighting spirit!

Frosch said...

When I had my PICC line it was $120 a day for the ceftriaxone treatment.

After 4 weeks the company made me prepay $850 a week at a time beyond four weeks in case the insurance would not reimburse. It's crazy since, as others have pointed out, the drug is no longer very expensive.

My impression is most LLMDs avoid using IV these days-- or at least there is a newer generation who do not.

LymeMD: are/'were' you and ID doc when you started off?

Lyme report: Montgomery County, MD said...

Docs may be fearful of IV antibiotics because they are afraid to provoke the wrath of ID docs who want to control this domain. Really sick patients do not get better without them. Rocephin has salutary effects on the brain beyond its germ killing properties. It certainly offers excellent penetration through the blood brain barrier. Neuroborreliosis patients have been shown to have cysts as well as spirochetes in brain and neural tissue. These complexes are even protected by biofilms making their eradication more difficult. Drugs like Zithromax are needed to kill the intracellular forms of the spirochete lacking in a cell wall.Very sick patients need big guns. The drugs must be chosen based upon a rational understanding of the underlying microbiology, immunology and pharacolgy as well as knowledge of recent published clinical trials.
I only started seeing the sickest Lyme patients recently based on word of mouth referrals. There is still no consensus that these patients are suffering from teriary Lyme disease, so it goes without saying that their are no clinically proven therapies for these desparately ill patients. Patients must be treated individually and physicians must constantly reassess the situation based on reponses to therapy.

dogdoc said...

NEVER give up on a patient- your dad taught you what was right. I don't care if they've come back from 2 specialists and 5 other doctors. It's my responsibility to fix them- by trial and error or learning from error if no tests help. Got nothing to lose at that point- you might be their last chance. If it doesn't kill them, you have a chance to fix- try. Other suggestions great and if can use them, better. From a field in vet med where $ are not there to do a lot of iv stuff, chronic oral antibiotics can do more than what you would think. From you guys, metronidazole and macrolide with doxy make a lot of sense- thank you for clinical insight. Pathogenenic micro should have told me that- pre vet school when thinking was important. But don't give up- if IV not affordable, it makes sense to cycle oral antibiotics that hit different tissue forms. Or combine if compatible. Minocycline supposed to do better with blood brain barrier, I know it's not great but in 3- 4 months who knows. Live culture yougart and enterobacterial products help vet patients tolerate gi side effects in my experience. Don't give up- never give up. You may be on plan Z (ie been thru a-y) but it could work. I've been on what seemed like plan z after many other specialists and drs and gotten things fixed. A lot in different diseases. If rocephin, zithromax, and flagyl were working, don't get off a winning horse.If you can't go iv, go po 3rd generation po cefa w/ reasonable csf penetration ( or sub mino/doxy class w/ high enough doses for cnf penetration) depending on cost, po xithromax, po metronidazole but long term since not iv. Suspect gi tolerance an issue- so cycle. Try anything- you are probably his last chance. While you are fighting for appropriate IV, at least try to keep at bay. Get creative- we don't have insurance or money in my field, but we can keep the fat lady from singing sometimes without it. Help this man- he is suffering. Fight what you can, work around what you can't. ALWAYS try, and you might win. I'm just a lowly vet, but I work under low money/ no insurance conditions usually. And I win against all odds sometimes. You are his chance- form a next plan and try it and keep going. These patients everyone gives up on b/c they are not neat and pretty. I have been "IT" many times and have won Against all odds- you keep trying. You obviously have the passion and caring for patients that is lacking in both our fields. I'm not some super Dr, but I WON'T give up so I win when the great Dr's fail. You keep trying- you never know, you might get lucky.

dogdoc said...

Sorry hit a nerve- so many of my patients given up on and left to suffer with chronic conditions or put to sleep. Have learned over years that chronic things not supposed to be treatable are treatable sometimes. I can't even begin to think what it would be like to be you- pets don't have jobs to lose or families to feed. So much rests on your shoulders.

staples said...

Thank you doctor for not abandoning your patients. I know your father
would be very, very proud of you.
You made/and are making a positive contribution to mankind.

Can anyone help this man(patient) get an interview with for example: The Washington Post Newspaper, Diane Sawyer (and high profile people like her), high-profile movie stars interested in the cause, a Congress person or Senator interested in the cause, a Cable/TV program???? The more exposure to the truth as to what is happening behind people's backs, the more likely people will band together and change laws.

Lyme report: Montgomery County, MD said...

Bush had (has) Lyme and refused to release info about the type and duration of his treatment. He claimed confidentiality. The intimate details of his colon polyps were made pubic. This story was covered in the Guardian of London. They suggested a cover up to protect insurance companies. Staples, we live in a complex and sometimes very nasty world. Stay idealistic and try to change the world. It can never happen if people do not at least try.

Lyme report: Montgomery County, MD said...

Bush had (has) Lyme and refused to release info about the type and duration of his treatment. He claimed confidentiality. The intimate details of his colon polyps were made pubic. This story was covered in the Guardian of London. They suggested a cover up to protect insurance companies. Staples, we live in a complex and sometimes very nasty world. Stay idealistic and try to change the world. It can never happen if people do not at least try.

dogdoc said...

This guy has been bugging me for a while. Why isn't the Lyme hiding from his immune system like in so many other chronic patients? Or do some just present fuliminant like this? He obviously is making antibodies, but could it be an impairment in cellular immunity? I know the Borrelia are directly immunosupressive- but in most of the things I have read, they still need to go and hide from the immune system to persist long term. I'm sure you've tested him for what is testable for immune wise- in critters we have immunosupressive viruses, chronic lymphocytic leukemia and the like immune cancers, autoimmune disease, ect. I'm sure you've tried thru all the various oral cocktails of antibiotics (researchers at Columbia that did original work in metronidazole and cyst form have found similar activity in the Plaquenil so maybe not just a ph effect in the amoxi/zithro/plaquenil cocktail)and have been thru all the alternate drug classes that have some activity vs Borrelia but we don't use a lot (ie fluoroquinalones, beta-lactamase extended aminopenicillins like Augmentin with add'l amoxi to get dose up). I'm assuming you've been thru depo- IM penicillins with the xithromax and metronidazole orally since that's cheap. You know in animals we think metronidazole affects cellular immunity and it is sucessful in some autoimmune conditions when used long term at lower tolerable daily dose (ie forever as a control drug). These are not cases where we think we are treating bacterial infection- but then again who knows what we actually are treating. Do you have any options for parenteral therapy that aren't IV that might be cheaper? I remember an IM 3rd generation cefa in one of my kids once- not sure how you could get the muscle tolerance for that long even in a human with lots of big muscle groups. We used to use a lot of these in pet birds where iv access is just very limited (don't do exotics anymore). We even had an IM depo form of Doxycycline we used to get from overseas- that stuff worked great compared to po Doxy for those critically ill birds with acute psittacosis when you could get your hands on it. Just trying to think outside the box. I'm sure you've been in all these spots already- I just wish you could help this guy somehow.

Lyme report: Montgomery County, MD said...

Bicillin can be used. Can you get me reference about anti-cyst effects if Plaquenil? I have seen it written a few places but I keep saying it isn't true. Maybe I am wrong. Patients who have been on long term Plaquenil still Herx like crazy when Flagyl or Tindamax is added. A lot of the antibiotics may have affects that we don't now about. Cell mediated immunity is affected as well as humoral. We see that in lower NK cells and suspected decrease in Th1 responses due to vitamin D alterations. Bb has numerous ways of avoiding the immune system. You can look up Burrascano's guidelines. He uses very large doses of everything, including Bicillin. I tend to be more conservative. I still think that Rocephin is the best bet and giving it IM is a poor option. Different meds are available in humans than animals. One patient who was allergic to Rocephin has done great with Primaxin. You need multiple daily doses and it is quite expensive. CNS penetration and modification of glutamate levels are thought to be important. My sickest patients have responded to IV Rocephin, IV Zithro and IV Flagyl. Very expensive. Cipro might be effective, but can cause tendon rupture. I have used it with some success in the past. Jemsek recommends Cleocin, also cheap, but no one else has written about this drug for Lyme. No two patients respond to the same drugs which keeps things interesting. Perhaps this is do to co-infections or variations in antigens (epitopes) and strains of Borrelia.
We don't know a lot more than we do. I guess that is why it easy to criticize LLMDS. No cookbook here.

dogdoc said...

If you think you have a good cookbook and its medicine, you are not looking for what you are missing. I haven't looked up the original guidelines but I read your post on them. My reference was to some recent research in Europe I beleive (might have been someone else nearby- I remember the studies and ignore the countries) comparing IM benz. penicillin and PO doxy to IV rocephin in neuroborreliosis. I know we do different stuff in animals- since so few drugs are actually made for animals we have off lable license in most areas and are free to compound what is not commercially available. Different ball of wax. Cipro safer in animals in sounds, at least post juveniles. Don't have much on clindamycin in my field and Lymes either. I remember some european MIC studies in- vitro that showed some decent MIC's (but we all know how little that means in- vivo vs in real patient). In critters I have used it long term for nasty anaerobic dz- push the probiotics there! That is diarrhea in a bottle. Speaking of probiotics, I personally can reccommend the saccharomyces you like in combo with GNC's top line acidophilus product and bifidobacterium product. I've never been able to tolerate amoxi or zithro w/o diarrhea- lot of antibiotics flying around my house and zero diarrhea ATT.
I'll see if I can get you that reference on Plaquenil. Came across it searching by author for the metronidazole study- same guy out of Columbia U., number of years later. Vastly different distribution in Plaquenil vs metronidazole, so am not suprised they herx. Metronidazole has amazing penetration into CNS and just about everywhere even w/ po dosing. In critters, it is a neuro reaction waiting to happen in higher doses longer term. Looks like in people, neuro reactions can have same signs as Lymes- that's scary. Long term Plaquinol doesn't have a prettier side effect profile. I am comfortable pushing doses way up in penicillins and cefas in critters with severe dz (you should see doses of pencillin we use for Lepto)- wide margain of safety unless renal clearance impaired. The rest, I would be scared of. We don't use zithro much so I have no experience there. Rocephin/ zithro/ metronidazole makes a lot of sense- spirochete, l- form, cyst (or I beleive emrging from cyst) all covered respectively. Cost a big issue. Have you ever tried IV Rochephin (available generic online now as I think you have posted) and po zithro and metronidazole (both cheap generics now) ? I would think the metronidazole would perform for you PO- excellent absorption and penetration. We have almost stopped hanging it IV in critters b/c it doesn't make a big clinical diff. Zithro I have no clue b/c I don't use. How about hi dose IM benz. penicillin with zithro and metronidazole po? I am not suprised that different patients respond to different things- if nothing else it depends where the little bugger likes to hang out. All antibiotics like to get into different tissue spaces. And with all those plasmids, I think resistance may play a bigger part than we can document in- vitro with the culture difficulties. Come on now- how many other diseases do we treat that we know less than we want to. Maybe in humans, you know it all. I personally know I am flying by the seat of my pants often. However, at least I am still flying. I will fly after 2 specialists and 6 generalists have given up - and I still win a lot of the time in chronic dz. A lot of what gets missed there is common sense and actually watching what responds to well directed trial and error of therapeutics. The patient tells you a lot (at least in critters), if you just look for it and don't believe you know it all. The owners actually tell you a lot (a lot of folks discount this, but signs are usually real- they just don't know how to describe them in terms we dr's think of- you can work that out w/ add'l history). Look, bottom line, if you care and you try in my field (and you are not scared to "boldly go where no one has gone before"), you can make a difference on patients everyone else gives up on. Sorry, my brother was a treckie and I think I've seen every episode three times. But it fits. Mammals are mammals in a lot of diseases. Let me go work on those ref's before I move on.

dogdoc said...

Sorry for the delay- got sidetracked in the interesting world of RA/SLE and hydroxychloroquine. I got wrong reference on Columbia U- guy from Columbia was talking about studies so I remembered them from there. The study was Internat'l Microbiology Vol 5, No 1, March 2002 Brorson, et al. An in-vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorphii to hydroxychloroquine. These were the same guys that did the metronidazole/ cyst studies that everyone references. The research is out of Norway. Good thing you are fixing my brain!
Speaking of which, I have read of Burrascano's stuff and have all of it printed out and well highlighted. I just didn't place the name. Only now is who's who in Lymes starting to mean anything to me.