Topic: What do you guys think of this blog by a Lyme MD?
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
I have to agree with what she is saying. When I stop reading the internet and obsessing about every new piece of information, I feel more "normal".
"I saw a patient today who has been treated by another physician. The patient spends nearly his entire day taking supplements along with a complex regime of antimicrobials meticulously scheduled. The medicines are rotated and pulsed within specific protocols. This patient is going broke, in part because of the high cost of supplements which he assiduously takes per his physician's directions. He has stopped working in part because his illness is a full time job. His life centers around being THE PATIENT. Lyme disease has become his life. There is no time for normalcy. The sick role can become integrated into the disease. Perhaps, ironically, some readers of this BLOG focus all of their attention on their illness--scouring discussion forums, constantly perusing the Internet, seeking some new tidbit of esoteric information. The disease becomes a life style. Many of my patients have told me that they no longer read my BLOG or read about Lyme disease, the politics and the controversies. Of course when I see such patients we discus the course of their disease and the rationale behind prescribed therapies during each visit.
These patients may be free to pursue a life which is as normal as possible. They spend time with family and friends. They function at the highest level possible in a multitude of domains. Suffering with Lyme disease becomes something they live with: It is not the center of their universe.
Such patients get up every morning, despite pain and other symptoms, put on their best faces and face life head on in spite of adversity. Other patients are constrained within a prison, imagined or real, comprised of walls, esmeshed in the fabric of illness and its attendant disabilites.
So I like to keep the regimens simple, and largely devoid of supplements. Changes are made when patients see me at scheduled appointments.
A word about supplements. Some patients certainly report benefits from a variety of add-ons. Some feel energized from Co-enzyme Q10, which I truly think helps many people. Some swear by teasel root. I may recommend one or two additional supplements but not many. I do not recommend multi-vitamins on a routine basis.
I was reared in medicine with a healthy dose of skepticism regarding vitamins.(I have discussed this before). Vitamin E--the "miracle worker," turned to offer no benefits to heart patients in controlled, published studies. Vitamin C turned out to be potentially harmful to heart patients. It was shown to increase plaque in arteries, increasing the risk of heart disease unexpectedly. Simple chemistry may give us the reason. Vitamin C can exist chemically in a reduced or oxidized form. The reduced form is an anti-oxidant; the oxidized form can be a harmful pro-oxidant. Supplements may not be properly balanced. So I perfer to leave nutrients and vitamins in the capable hands of Mother Nature. I stress a healthy diet with fruits, vegetables and whole grains which gives the body vitamins in their proper form along with the potpourri of photochemicals needed for these nutrients to perform optimally.
A folksy argument I frequently share with patients is something like this: A chronically ill patient is likely to be deficient in a variety of nutrients. This is caused by the illness or chronic infection as in the case of Lyme disease. One can think of such a patient as akin to a gas tank with a hole in its bottom. You keep filling up the tank with gas (supplements) but the tank is perpetually empty because the fuel drains through the gaping hole. Close the hole first--by getting the infection under control, and then the metaphorical tank can become full with the needed fuel. A case of not putting the cart before the horse.
This does not apply to patients with dramatic deficiencies. And of course, this is just my working hypothesis and I know that most other physicians operate from the opposite paradigm. My experience tell me that it works both medically and psychologically for my patients"
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I think there are varying degrees of this disease and some people truly are affected in such a way that normal life just isn't possible.
But, for me, I know if I allowed myself to think about this disease and make it my everything, I would be in a much darker place right now.
I go do things with family, even though I know I'll be exhausted at the end of the day. I took on a job from home, even though I know there will be days I'm challenged.
I purposely don't read every thread on this forum, because I know some threads will take me somewhere I don't want to go. I have two Lyme books and the 'Under Our Skin', I haven't gotten into any of them. I know that once an image is in my head, or words, it'll be that much harder to overcome those thoughts and fear will creap in.
I choose not to learn all the ins and outs of this disease because I know me very well. And I know that I'm the type of person that must keep her mind and heart focused on the positive in life and focusing my faith for a supernatural healing. Doubt and fear easily come in but are very hard to root out.
This is all just me, though, and I don't pretend that everyone should be like me, nor do I think they should.
Some people feel empowered by the Lyme knowledge they have. Some people are SO sick that they can't go out with family, work (even if at home) and so forth.
Every person is different.
But I do know that it usually is easier to fall deep into pain, disease - than to resist it.
(I'm curious what blog this is)
Posts: 256 | From Texas | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BackinStOlaf,
we need the link to see what blog you describe. I am aware of one by a man but not by a woman. Please post the link. thanks.
But if you are only asking about the comment:
" . . . stop reading the internet and obsessing about every new piece of information, I feel more "normal".
Well, there is a huge difference in becoming educated and obsessing. Huge. Obsessing is never good. Education is.
If time on the web is not helping, then stop. If it empowers, then proceed with care and a plan.
I do agree with the statement near the end of your post, INFECTION must be addressed fully and completely. Treating infections is top priority.
As for their (her or his - but I do think this is a man blogger as it sounds familiar but you said it comes from a "she" so I don't know who that is then).
As for the thoughts on supplements, while infection is top priority, without liver support, so much damage can occur not just to the liver but also to the ears. So many drugs are toxic to the ears and liver support can make a difference in helping the liver to work better to keep toxicity down so that treatment is better tolerated.
While treating infection is key, (in my opinion) there are certain supplements that are essential. But those are best addressed by those who are educated in that area such as LL ND (naturopathic doctors) or the LLMDs who have furthered their studies in that area. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Here is the link everyone-
Maybe it is a man- I have no basis for saying ``she''. Not sure why I did.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, that is a very well respected LLMD. He just does not get into supplements so information about that would be obtained, and weighed, from other sources.
What he does provide on his blog is excellent thought and he is obviously very well educated about tick-borne infections. He has helped many patients get better. I admire his work yet I also move beyond it to strong favor of support supplements. With the other issues that face me, for myself, I need more.
I did waste years thinking if I could just get stronger . . . and that approach failed. But, for myself, just abx also failed due to a liver and ear damage.
As with all study, we read from the best researchers and he is among those. However, no one LLMD, no one researcher or author can completely cover any topic, especially one so very complex as tick-borne infections and the toxicity and damage that comes with that.
So, back to the obsessing thing and being overwhelmed. It's simple. Monitor self. Set some time aside for education but if it feels like obsessing rather than learning, change course.
If one is lucky enough to be able to take the Rx and just carry on and get right back to life, Yippie ! I'm glad for them. They are lucky. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I think that the blog is really refreshing. I especially like what he has to say about supplements. My LLMD recently advised me that a study had connected calcium supplementation with an increase risk for heart attacks.
I feel like some supplements do help. But really it is just the probiotics which make the big difference in my life. One can spend every dime on supplements.
Now I'm taking that doc's excellent advice and I'm closing my Lymenet session.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Yes, it can become an obsession, yet to everything there is a balance.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I think that most of us, including the doctors, couldn't define the true line between obsession and reasonable knowledge seeking.
Lyme Disease "causes" obsessive behavior, it can cripple someone so bad physically that even if they don't obsess, they do become desperate, and desperation from the outside looking in (to family, doctors etc) can appear as obsession.
I've been accused recently by my mom and my doctors of being a drug addict. Let me briefly explain.
I take Ativan to sleep. I've taken 2mg for 6 years. If I take it, I get "reasonable" sleep that allows me to survive. I still can't function well enough to leave my house much.
However, if I boost the dose and take 2 mg at bed and then 2 mg 4-6 hours later in the middle of the night, it boosts my health to 5-10% higher. So I go from 35%- 40-45%, which gives me enough energy to leave my home and function a little.
Now here is the problem. This is the only medication of all the drugs, supplements and wild wacky things I've tried that helps. It also coincidentally is highly likely to create physical chemical dependency (or...addiction for some people, which is entirely a separate issue from physical chemical dependency.)
If you take Ativan at a higher dose often, the lower dose will no longer work, or you may find yourself taking such a high dose that although it may be entirely safe and worth the risk, many other doctors won't think so, and if you lose access to the original doctor who prescribed it, you'll be forced into a detox rehabilitation clinic.
So, I argue with family a lot, as well as my doctors. I tell them "I could take this drug more and function a little more, or I could take less and function less, but the drug will continue to work enough to survive.
They say "It's too late, if you need more to function, then you're already addicted. You need to take the medicine as prescribed and get on with your life. You focus non-stop on this illness and you don't live."
I reply with: I use the medication appropriately and as prescribed, however I only use a higher dose on days when I have to leave the house such as for very important appointments -- which I have a lot of, such as doctors, physical therapy, or obligations of family etc (Holidays).
My doctor told me during my colonscopy that because I had developed such high tolerance to the "Benzo" drugs, that I was going to die soon like Michael Jackson if I kept it up.
I have no idea what he's talking about, because I take 2mg at bedtime on most nights, and occasionally I'll take 1 or 2 mg's more later in the night, but only if I have to. (Which I said earlier)
He said "Well, obviously you're a drug addict because I had to administer a lot more of the sedative that we normally use. You need help, you need to get into a rehabilitation program immediately before you die in your home like Michael Jackson.
So you tell me, who is obsessed? We're treated like little children who can't be trusted to know what is in our own best interest, even when we are affected with the psychiatric and physical symptoms -- yet somehow we're still responsible for "getting out of ourselves, getting on with life, etc."
Would you get on with life if you had a knife sticking out of your back!
That's the true crux of the issue. We're accused of this type of behavior whether we really are or aren't. It is rare that a Lyme Disease patient truly obsess because of some deep seated psychological problem totally unrelated to Lyme.
The rest of us are screaming ourselves to sleep, begging and praying to a God that never comes to relieve our pain and to give us back our lives. A lot of us wouldn't waste thousands of dollars taking supplements on a "meticulously" scheduled routine unless we weren't desperate to feel well enough to be able to do the things we're being told we ought to be doing if we'd only stop obsessing and get off the internet.
And the moment you get mad about this specific issue, they all look at you and shake their heads saying "You need help......you need serious help."
You're not allowed to get mad, because then it just proves you're out of control. Absolute bull****.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
When you are in pain and agony and sick every minute of every day, it would be a matter of trying to find an answer to aleviating these symptoms.
I would challenge the author to experience this disease with no relief from treating extensively and then ask them to write another blog about what they would do.
Also the statement that "Vitamin C turned out to be potentially harmful to patients" and that it causeed arteriosclerosis is a$$ backwards.
If you google Vitamin C and heart disease the studys prove just the opposite. I just find the information given by this physician to be pretty narrowminded and annoying at best.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
I am so sad and sorry that you have been treated with such disrespect. I am sending you validation. Fire the doctor. I don't know what to say about the family...that's tougher.
As for the LymeMD blog--- if you read more of his blog you realize that he is a hardworking and dedicated Lyme doctor. Also, for the record, he has Lyme himself.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think there is a lot of truth to what he's saying.
I think the important part is to take away the main idea of what he is saying. So, don't literally throw away any supplements that are helping you.....just try not to focus as much on being a Lyme patient (this isn't always possible, but I think that advice will help most people, across the spectrum of severity of illness). So while not ALWAYS applicable, it is good advice, that most people need to hear.
For example, I realized recently that if I were to stop a lot of the restrictive things I do, and use the time and energy I put into that, to at least ATTEMPT working out, I'd probably be helping myself more. In other words, eating prepackaged food so I have the energy to go take a long walk is better than using that energy to do part of my Lyme routine, including my sauna, etc. Eating prepackaged food is not ideal, but my health, personally, is better served doing something normal like walking than being so tired/preoccupied by other things that I don't have it in me to exercise.
I don't think being online is making us sick, but once you start to improve, you may not know it, because staying online could be keeping you sick (time spent indoors and not doing things, brain power devoted to illness, not the rest of your life, etc). I know that sounds harsh, but I do think it can be true. I am not saying it is always true, but I think people should be aware.
Posts: 4590 | From Midwest | Registered: Jun 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
This blog is written by one of our local lyme doctors. I don't think he knows that much about lyme disease, compared to the local lyme docs I recommend. He hasn't been treating it that long.
I was told that he has cured a couple people who went to him right after being bitten--easy cases, in other words.
I just hear from all the people he isn't getting well. I have heard from quite a few of his patients.
And, this blog was written 1 year ago when he had 1 less year of experience treating this disease. He has been treating it about 3 years now. So, he was treating it for 2 years when he wrote this. That is not a very long time for a complex disease like lyme.
He does not treat lyme full-time. When a doc treats full-time, his knowledge of the disease increases much more rapidly.
If Mary is correct that he has lyme, that is what I predicted a few months ago when it was being reported that he was sick and the illness was unknown, perhaps autoimmune. I have heard from his patients that he treated himself for lyme in the past. Sounds like it is back. Sorry to hear that.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
He also says somewhere that his blog isn't the "end all be all" ...rather a physician "thinking out loud and sharing" in the hopes to help someone. He, himself, has admitted he's been wrong in is thinking - I admire that in a Doctor, not many are that human.
I went to him 2 yrs after being bitten. Following his treatment, I've been symptom free for 9 months. I'm thankful I have my life back.
I just wanted folks to know that he is a good Dr, I had a very positive experience with him and he doesn't just cure the acute phase of Lyme, I was pretty sick after 2 yrs of being misdiagnosed and under-treated...
Posts: 108 | From Raleigh, NC | Registered: Apr 2008
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