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Libertad's Journal

libertad
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03/13/2010 22:40 #51181

On my way home from Charlotte
I am on my way home from Charlotte and am writing this thanks to the free wi-fi access Airtran is offering this week. I left last minute to go stay with my Aunt who I wrote about previously who is sick with Lyme disease. It was nice being there since this was her first week back to work after two weeks of being bed-ridden. We really had a nice time together and I love Charlotte. I drove her to work everyday so I got to get a better feel for the city.

Her flight was most unfortunately canceled to DC to see her doctor. She got as far as Atlanta before finding out she had to go all the way back home. Now instead of seeing the doctor she has to pay $350 out of pocket to talk to him over the phone. There aren't many doctors who treat chronic Lyme. It is very complicated but her doctor lost his ability to practice in NC because he does treat Lyme patients. People travel from all over to see him and it is a shame he can't practice in Charlotte anymore. There are some in the medical field who think Lyme is all in the head, that the people who suffer it are just hypochondriacs. That is what happened to my Aunt and why she wasn't treated soon enough. When you don't get treated early enough it becomes very very difficult to get it out of your system.

If my Aunt becomes this sick again this year she fears she will be forced on to disability. It has been 13 years she has lived with this. Everyday she is sick but when she has a flare up it is like having the flu but worse. My grandparents will be there to help her in two weeks. They are going to stay for two weeks with her which is good. My Aunt's best friend and roommate died 6 years ago. Despite everything she really doesn't ever complain.

While I was there there was a news release about how researchers have found that papaya leaf extract may be able to reverse cancer and tumors because of the affect it has on the immune system. She might ask her MD about it. Interestingly, papaya leaf extract is also used to fight malaria and my Aunt is taking anit-malaria drugs as part of her treatment for Lyme.

The South has this fast food chain called Chick-fill-a. It is so funny because it isn't pronounced with a soft A but like fillet as in chicken fillet. I cooked every night and froze the left overs so she has plenty to eat until my grandparents get there. She just doesn't have the energy to do much by the time she gets home from work. It kind of perpetuates the illness because then she isn't eating healthy and it is harder for her to get better.
libertad - 03/17/10 14:20
I know how important science is (e:tinypliny), science has done wonderful things for us. The problem for my Aunt is that she doesn't have time to wait for the results on studies. She is ill now. Should I tell her that she shouldn't get long term antibiotics, that she should just lay there and accept that right now there is no way to make herself better? The studies regarding the effectiveness of long term antibiotic use have gone both ways.

I'm really not so sure about her MD. Definitely would advocate a second, third, fourth or fifth opinion but obviously she can't afford going here and there paying all their fees. He is helping a population that the medical profession is afraid to take on because the problem is that science hasn't been able to provide an answer, YET.

The other problem is that diagnosis (even according to CDC) is best mainly on clinical observation since the blood tests are not accurate. They are going to crucify my aunt's doctor for misdiagnosing somebody when admittedly the symptoms of Lyme can go along with any number of other illnesses? My Aunt was misdiagnosed but that doctor has not had his license revoked even though as of a result of that misdiagnosis my aunt is concerned that she will be forced onto disability. That doctor gave my aunt a prescription for antidepressants and sleeping pills when she complained of her symptoms (even the classic bulls eye rash). When she asked what they were for he gave her a pamphlet about the importance of trusting your doctor.

Anyways, I'm still doing research to find out more. It seems even more frustrating the more you read about how there are no definitive answers. Again, I appreciate your comments so much, because I really value your opinion and because you do care about others, and you do understand the value of science. I'll probably have more to say about this later. I'm interested to read more specifics regarding the death of his patient(s). The people he sees are very sick.



tinypliny - 03/16/10 12:22
Science is a powerful tool. (e:libertad), but in clinical medicine, findings from basic science, population observational studies and clinical trials need to be integrated. AND ALL of this integration needs to be in the context of the patient you are treating. The patient is the single most important focus of clinical medicine, but not at the expense of weighing evidence from other branches of science and personal clinical experience.

I would argue that none of it can stand on its own and yet, each component is a very essential and important part of the scientific process. I am fairly certain that all the questions you asked have at least an oblique/tangential/obscure or even a well-known answer to them. Each study adds to this body of evidence in each field. The very fact that you recognize that there is a lot more to Lyme disease - is an indirect evidence of science working in the background to change attitudes and practices over time. Confidence in science is not like faith in religion. It's hard-won and backed up by the logical thought processes that humans are capable of.

I understand your frustration in the progress of medicine for this particular disease - especially in the context of what your aunt and several other fellow-patients are going through.


Maybe this doc is doing the right thing - and making decisions based on his experience in treating Lyme patients (that have not been documented in published studies). But, there is an atrociously low margin for error in medicine, and he has had a few of these errors on the way. I think where patients will be forgiving about errors when it doesn't happen in their case, others in the field will be obligated to push for re-evaluation - just because more patient lives are at stake.

Hmm... I have rambled on, possibly because I am conflicted with ALL of my backgrounds - being in a lab, in the clinic and with the patients observing them. Its tough for me to take sides here and I am not sure I want to...
libertad - 03/15/10 23:13
This disease is not as rare as one would think. I know several who have had it. IF you are lucky, you will be treated early on, with antibiotics.

libertad - 03/15/10 22:44
His patients, including my Aunt, firmly believe in what he is doing. I don't know that it is the best thing but I do know that she has chronic Lyme. She had the classical rash, three bands for the blood test and all of the other symptoms such as fatigue, brain fog, arthritis and chronic flu like symptoms. If this treatment is not the best way then what is? I don't expect an answer from you tiny, but at least these freaking medical associations who proclaim that they do. I'm just so mad at how she has been treated from the start. She has had Lyme for 13 years, who is to say that these antibiotic regimens have not saved her life? At the same time who is to say that they have only made her worse? I don't have confidence in science alone. From my experience in a study, most of it is bull shit.
tinypliny - 03/15/10 22:24
The argument that everyone else customarily follows this treatment plan and so did I - is not very strong, especially when the disease is this rare and hard to diagnose.
tinypliny - 03/15/10 22:21
Hmm.. honestly, the facts stack up against him. I am not particularly fond of regimens that prescribe long-term antibiotics (much less by the iv route).

Evidence-based-medicine is the way to go, but some personal judgement about the strength of evidence is important - especially if the treatment is so radical and has a high chance of messing with the immune system or inducing multi-drug resistance for other concomitant/future infections in the patient.

Have there been any long-term survival studies on the usage of such high-dose iv antibiotics? What is the mechanism of their action? Does the pathophysiology of the disease strongly support such an option? I don't know the answers to any of these questions (and I am feeling lazy so I am not finding out today). However, anyone with some level of ethics and common sense would find out before considering the iv long-term high-dose antibiotic option.

Then of course, there is the whole informed-consent violation... Are you sure your aunt trusts this bloke and has no alternative options?
libertad - 03/14/10 12:21
:::link:::
libertad - 03/14/10 12:21
tiny, scroll down until you see the article n.c. board suspends lyme disease doctor for one year...http://www.aldf.com/news.shtml
libertad - 03/14/10 12:12
He has been an MD for many years. He was the first MD in Charlotte to diagnose someone with HIV and became known as the AIDS Dr. He lost his ability to practice because the Carolina medical board did not agree with the way he treated his patients. When I get a chance I'll look up the news story. That is why he had to move his practice to DC.
tinypliny - 03/14/10 09:36
Maybe (e:jenks) can shed some light on this but I am not sure I understand why he can't go through the appropriate channels to get a license to treat.

He does have a valid MD, correct? Why can't he get some CME (Continuing Medical Education) credits, training certifications and take some licensing examinations to get accredited? It would be unusual for docs to be scared of school or exams, considering they are almost married to them for a major portion of their lives.

tinypliny - 03/14/10 09:30
I am so glad you got to see your aunt. My good wishes to her! :-)

ladycroft - 03/14/10 09:03
Oh my gosh, I just flew out of Atlanta last night on the craziest flight of my life! I was lucky to get out - and when I landed in B-lo there were so many canceled flights, and LOTS of people stuck.

Sorry she couldn't get where she was going, but that there is even an option to have a phone consult? I wish her the best with this doctor!

03/03/2010 22:33 #51105

Lyme Disease
My Aunt is sick with Lyme Disease. It has been so many years and she has suffered so greatly from this horrible sickness. It is almost as if she has AIDS and it often becomes debilitating. I wish that I could do something to help her but she lives alone in the South and I can't do much except pray. She is going to DC to see an MD tomorrow. As sick as she is she is going to get on a plane by herself and see if this MD can help her. I hate how much she suffers, she really does not deserve it, she has been a great aunt and a great person. She is a principal at a school for children with learning disabilities.
paul - 03/04/10 10:36
Lyme disease sounds so scary.

02/24/2010 22:32 #51072

4 years with e:mike
Happy Anniversary Mikey!

Thanks for coming over to "see my Cuba pictures". It has been 4 years that we have been together (minus a short hiatus) but even longer since we first met at Coffee &. I can't believe how quickly the time has gone. We have both come such a long way.

Tonight (e:mike) surprised me and came to my house to cook me dinner and clean my dirty kitchen and give some loving to my rabbit! I left the house at 8am and didn't return until 9pm so it was so nice to have Cinderella come and spread her magic while I was away. I was so tired and thinking about my dirty dishes and how I didn't want to cook myself any food. I love (e:mike)!
ladycroft - 03/03/10 10:11
Happy Anniversary
Happy Anniversary
Happy Anniversary
Haaappy Anniversary

Pour a cheerful toast and fill it
Happy Anniversary
But be careful you don't spill it
Happy Anniversary

Ooooo Happy Anniversary
Happy Anniversary
Happy Anniversary
Haaappy Anniversary

Happy he and happy he
They're both as happy as can be
Celebrating merrily
their happy anniversary
metalpeter - 02/26/10 21:20
So I don't really ever say this but you two are so cute together oh yeah congrats
tinypliny - 02/25/10 22:55
Sweetness overload! You two are perfect. What a thoughtful and lovely thing to do, (e:mike). I can't think of a better gift. :)
mk - 02/25/10 22:03
Yay! Oh Coffee & seems so long ago!! Glad you two are happy and doing well :)
terry - 02/25/10 10:29
you guys are disgustingly cute.

Congrats!
leetee - 02/25/10 08:33
Wow... time flies... 4 years already?

Congrats and Happy Anniversary!
theecarey - 02/25/10 00:50
Happy Anniversary to the both of you!

wow, four years has zipped by! Going to Mike's journal hit me because I remember being at the Hotel Lennox and it threw me that it has been that long.
james - 02/25/10 00:20
;_; that is so sweet
heidi - 02/25/10 00:13
Love the Cuba pix story!!! So sweet. Congrats, (e:mike) & (e:libertad)!
paul - 02/25/10 00:02
Congratulations!

02/03/2010 19:58 #50963

Libertad and his neice
This is me and my niece Holly who is turning 16 tomorrow the 4th of February. I don't get to see her much now, but I did take care of her a lot when she was younger. I am so proud of her, she is an incredibly strong and amazing individual.

image


tinypliny - 02/25/10 22:56
I love it! Nostalgia defined.
jacob - 02/03/10 21:32
I love her expression. She looks opinionated.

01/27/2010 17:01 #50918

You should listen to e:tinypliny
I got cerumen impaction from using Q-tips. Yup, my ear got completely clogged with ear wax to the point I couldn't hear and I thought I was getting an ear infection. The Q-tip was pushing the wax back up into the ear, leading to the impaction. Just remember (e:tinypliny)'s beady eyes of disapproval every time you grab one of those "earbuds". The below comment was taken from (e:paul)'s journal "Shove a sponge in it?"

tinypliny writes at 09:34:26 10/11/08 - Comment #40098tinyplinyThanks for sharing, ((e:dragonlady)). I will keep that in mind and might switch when the guilt becomes unbearable.
Blood is not revolting or even disturbing to me at all.

As for ear candles. PLEASE RETURN THEM!!! They are clinically not efficacious, and in fact injurious.
link I was so grossed out by the sponges that I totally missed that you bought them!!

If you want to get earwax out, try and get eardrops/oil and drop them into your ear for a week or so (a few drops daily). This will soften the wax up. Then get a syringing appointment at the ENT clinic. Syringing is a process by which a fine spray of sterile water is pointed into the ear and pushes out the softened wax.

More tips for ear-health:
PLEASE get rid of all your earbuds. They are the NUMBER #1 reason for impacted wax and do more harm and no good at all. They push ear wax deeper into the ear. The ear has a natural conveyor belt like assembly whereby ear wax is naturally circulated outward from the tympanic membrane into the external ear canal. The best way to clean your ears is by swishing your finger gently around your external ear while you are showering. Poking and using earbuds are the reason 50K Americans report to the ENT clinic with impacted wax every year. I cannot reiterate this enough. Get rid of the ear candles and the earbuds. Both are evil little implements of ear ruin. :(


matthew - 01/28/10 08:34
I tell the kids at work to "never stick anything in your ear that's smaller than your elbow." And as for wet ears, I suggest running a hair dryer on them for a minute. It dries them out super quick!
metalpeter - 01/27/10 20:13
I don't mind wet ears but water build up is gross. I did at one time use some type of drops and q-tips to clean out my ears they where really bad and I made sure to pull forward it was amazing how much gross stuff came out of them, yuck glad I never had to do that again. I think I somehow got a bunch of water in there during a show, and that is what lead to the problems but not sure.
libertad - 01/27/10 17:43
It is OK to Q-tip after showers so long as you don't stick it into the ear canal. I don't ever want this to happen again though. It cost me a $35 co-pay and it cost my insurance company a lot more. I also took the day off of work so there was the loss of productivity as well.

(e:tinypliny) what do you suggest for ear drops/oil for maintenance of the ear canal? I think my impaction might have been influenced by my allergies.
jenks - 01/27/10 17:31
I understand the risk, but I HAVE to q-tip after showers. I can't stand the feeling of wet ears. yuck.
mike - 01/27/10 17:22
i told you that ten years, but you don't listen to me!