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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by floatingbridge on April 8, 2011, at 15:46:14
(Apologies in advance for initiating many threads....)
My gp suggested I see a pain specialist, so I said yes, please generate a referral.
Since then, I've reconsidered a few disasters with physiatrists (functional medicine), and I'm wondering what a PM specialist could offer. I don't want to set myself up again.
Narcotics seem dead-end, unless someone would be willing to reasonably work with me to find an Ultram ER dose. No patches; they seem to lead to dependence, and I do not want my well-being tied up with a doctor or med to that extent.
I know there are some things out there that could work. I just don't want to feel humiliated, judged, or lectured to death. (Can you blame me?)
Anyone have a success story?
Looking ahead,
fb
Posted by bleauberry on April 8, 2011, at 16:49:51
In reply to value of pain management specialist: experience?, posted by floatingbridge on April 8, 2011, at 15:46:14
If you want a successful pain management system, then just pretend you have Lyme disease. And treat it. Who knows, 1 in 10 people who do have a Lyme-like or Lyme-related problem have not been diagnosed. Instead they got a diagnosis of: depression, anxiety, schizo, arthritis, lupus, ms, on and on.
Interesting note. The Lyme specialist I used to see did not start out as an infection expert. He started out as a pain management specialist. Being an observant and curious intelligent man, he noted that over the years the patients who had the most stunning unexpected improvement were the ones that took antibiotics for other unrelated problems. It was from there that he was able to put two and two together and draw the links. So while his former pain medicines used to include the common pain meds that all today's specialists use, and antidepressants, and such, today his most successful weapon against pain is....antibiotics.
He told me stories of other patients who didn't have Lyme...for example a man who presented with arthritic like pain that began a few months after a barnacle scratch while swimming. He was totally cured....on a hunch...with antibiotics.
So I guess there are two ways to look at this. On one hand, you can ignore what is causing the pain and instead take drugs that dull it but not stop it. Or you can stop the cause. Not quite as simple as is sounds, because to do so requires treating things on a hunch or as a probing experiment. Diagnosis is not likely, probable, or realistic. We aren't there yet in medicine. You'll know you got better for sure, but you may never know exactly what the culprit was.
Think about it. Pain is basically inflammation. What causes inflammation? Irritation. What causes irritation? Most likely cause....an organism of some kind. Not only their excretions and living habits and eating, but the cascade of cytokines and such provoked by your immune system. Sometimes so much so that your immune system can't tell the difference anymore between the invader on your own flesh, and thus starts attacking your own self. Pain.
Of course, if there was a prior broken bone, torn ligament, sports injury, or whatever, then that would explain the pain too. But that would be a different kind of pain.....localized, not generalized.
The Lyme doctor did use pain meds though. While improvement can happen within a few weeks, it takes months to really get a handle on it. In the meantime he uses pain meds and Gabapentin. Gabapentin was one of his favorite meds actually. But he absolutely stressed it has to be brand not generic. On the other hand, he found generic pain meds to work better than brand. No matter, either way, they are only temporary tools until progress is made.
The only time he would treat patients any differently is if they tested positive for Rheumatoid Arthritis. I don't know enough about that topic so I can't comment, other than in his experience that type of arthritis was definitely a totally different beast that required a referral to a specialist in that field.
Some of the most effective, cheapest, and healthy choices for chronic pain are within the Lyme herbal protocols. These herbs are amazing at how they calm down an overstressed immune system or turn it up where it is weak....simultaneously....in addition to wide spectrum anti-inflammatory mechanisms and built-in analgesic action. In that category I can personally suggest from my own experience the power of Japanese Knotweed and Stephania Root. Stephania root actually has more anti-inflammatory action and anti-pain action than steroids, but is not a steroid. I have not tried Devil's Claw, but that is supposed to be fairly decent. These herbs actually do similar things as COX inhibitors and such, only different, and much better and more wide spectrum.
If you wanted to probe into the infection stuff, that's easy. Both of the above herbs are fairly potent antimicrobials. For more oomph, you would want to look at things like raw garlic, berberine, pau d'arco tea, grapefruit seed extract, and actually quite a few decent choices. Teasel root tincture works very well for pain symptoms in Lyme patients, for some reason better on the West coast than the East. Maybe different infections. With any of these herbs, there is a pattern to look for....maybe an initial period of a few days where you think you feel better than you have in a while, followed abrupty by a worsening of all your symptoms and maybe some new ones. That is called a Herxheimer reaction....simple....too much death going on and the body's detox systems are overloaded. Traffic jam of cellular debris. Back off on the dose or temporarily stop to allow the liver, kidneys, and lymph glands to catch up and mop up.
Anyway....food for thought. I don't know, if I were in your shoes, and actually I am, I do not want to be sentenced to a life in prison of pain and rely only on pain blockers forever. I want to get to the root of it. I want to stop the progression of disease, arrest it, not just cover it up so I can't feel it. I do not want to allow it to dominate more destruction on my tissues.
On a more mainstream note, the combination of tylenol and advil is far more pain relieving than either alone. Synergy. I learned that from a dentist after a tooth removal. The combo worked a lot better than opiates on pain.
Final note. Low doses of some antibiotics, for example Doxycycline, have fairly good anti-inflammatory and anti-pain mechanisms on their own. I remember even at a subclinical dose of 25mg or 50mg, my longstanding chronic headaches were gone
My overall message....I am not a doctor and I don't know the details of your case but I would certainly try more sensible strategies that actually make a ton of sense and work in real doctor's offices before submitting myself to a pain specialist. That is, unless he is one that has also seen the connection between infection, immune system, and pain. Those kinds of doctors are sadly in short supply.
I hope you find something here helpful!
Posted by emmanuel98 on April 8, 2011, at 18:43:24
In reply to value of pain management specialist: experience?, posted by floatingbridge on April 8, 2011, at 15:46:14
I had some pain issues years ago and went to a pain clinic. They had an array of things to offer - nerve blocks, meds, also meditation. Pain specailists tend to have a background in anesthesiology rather than psychiatry
Posted by Phillipa on April 8, 2011, at 19:01:27
In reply to Re: value of pain management specialist: experience?, posted by emmanuel98 on April 8, 2011, at 18:43:24
You might get at the root cause with MRI? Have you have a rheumatoid factor blood test done? As autoimmune diseases do go together. My Son's fiancee got in her car one morning she said and couldn't turn the key due to pain. She went to the doc diagnosed early rheumaoid arthritis and is on shots of Humara and one oral med. She now experiences no pain. But that is in diagnosed rheumatoid arthristis. Regular osteo arthritis can be seen even via xray. I have that. As for antibiotics l00mg twice a day of doxy did nothing for my pain. The amazing thing was the 24 hours of motrin for inflammation that the dentist had me one. The next day no pain. They now do claim that it can cause heart disease motrin that is.
I once years ago when had herniated disc when to a pain clinic and it was excercises. Love Phillipa
Posted by floatingbridge on April 8, 2011, at 22:33:41
In reply to Re: value of pain management specialist: experience?, posted by bleauberry on April 8, 2011, at 16:49:51
BB,
Thanks again for your generous support. I'm widening my treatment scope to include supplements and herbals. You've mentioned knotweed before. I don't believe that's well-known on my coast. I'll ask around. And something called, Boswella, boswalla? Thank you for the herb list.
Is neurontin very different in effect than Lyrica. Lyrica caused me to behave like a maniac. It was awful and didn't help my
pain :( though RADICALLY decreased anxiety, (though created terror ;) ), and thankfully walked me through what could have otherwise been nasty and protracted snri withdrawal.So, I wish and hope re: neurontin because it helps so many, but...?
I do have mechanical issues in the lumbar, so sometimes pain is localized there. That's the bass note. An updated MRI is due and should be ordered soon. A DO with the personal affect of Max Von Sydow in a Swedish flick says if my gp is in a hurry (ummm, what about me?) to order the lumbar MRI now. (What's the wait.) However, whatever the heck he does, it's kinda' really helping. So.... I see him in three weeks.
For the darn fibromyalgia, a very stress related shell game of shifting symptoms. With the lumbar issues, standing provokes pain and fatigue (darn!) so standing or sitting cross legged, swami-style, something I've done my entire life,
will assuredly elicit pain in the entire lower body, hips, and legs. Feet, hands
that ache to the elbow (CT, too).Feverish w/o fever, chills, flu-like aches w/o the flu.
Oh, this is a ridiculous long ramble. What else did I want to tell you?
No RA :) Pretty sure no Lymes, so not inclined to go the antibiotic route, but I'm filing it.
What do you know about guaicfene (sp?). A since dismissed fibromyalgia protocol uses it. Come across anything in your
studies and experience?Inflammation. Beginning to address that slowly. Yes. Have hashimoto's anyways. No doc knows what to do about that :( but inflammatory processes involved.
Told my new gp about LDN, and she read about it and said, let's go. So, nothing but 20mg daily of norco between me and starting. It won't cure me, but it could help.
Not looking for a cure anymore. Just well enough. :)
Thanks for your time. How have you
been doing?fb
Posted by floatingbridge on April 8, 2011, at 22:39:36
In reply to Re: value of pain management specialist: experience?, posted by emmanuel98 on April 8, 2011, at 18:43:24
> I had some pain issues years ago and went to a pain clinic. They had an array of things to offer - nerve blocks, meds, also meditation. Pain specailists tend to have a background in anesthesiology rather than psychiatry
Nice to read that as past tense for you. Is that correct? And in anesthesiology?
Did you find any of it useful or helpful? I'd be curious to know more.
The last physiatrist I saw was such a know-it-all. I still bristle thinking of his assumptions.
Thanks,
fb
Thanks!
Posted by Phillipa on April 8, 2011, at 23:33:06
In reply to Re: value of pain management specialist: experience? » bleauberry, posted by floatingbridge on April 8, 2011, at 22:33:41
FB fever? Something else is going on. Inflammation from what though? Here I go googling. Love Phillipa
Posted by emmanuel98 on April 9, 2011, at 0:15:18
In reply to Re: value of pain management specialist: experience?, posted by floatingbridge on April 8, 2011, at 22:39:36
The non-med route worked for me. Once a week meditaion and stretching was really helpful
Posted by bleauberry on April 9, 2011, at 5:02:09
In reply to Re: value of pain management specialist: experience? » bleauberry, posted by floatingbridge on April 8, 2011, at 22:33:41
Just a couple observations:
>
> For the darn fibromyalgia, a very stress related shell game of shifting symptoms.Fibro is one of the most common names used in misdiagnosis of chronic low level infection such as lyme or others. Many Fibro patients have been improved or cured by treating as if infected. That generally means antibiotic and antifungal, herbals preferred to start and finish, but meds sometimes needed during the middle if more firepower is needed. Herbs are also the easiest safest way to "probe" to see if this is even an issue to pursue lightly or heavily.
>
> Feverish w/o fever, chills, flu-like aches w/o the flu.The above line really jumped out at me. That is highly characteristic of lyme and several other similar type infections. That is not characteristic of Fibro or the other mystery diseases.
>>
> No RA :) Pretty sure no Lymes, so not inclined to go the antibiotic route, but I'm filing it.Unless someone has done some probing and challenge experimenting, there is absolutely no way to know if lyme or lyme-like is involved or not. Even the very best lab tests have high rates of error. Our technology is not there yet, and doctors are not well schooled on the topic. Assuming you don't have an infection is, in my opinion, a monumental catastrophic mistake.
I said it for years and years...."I don't have lyme or anything like that, that only happens to other people." The less we know about a topic, the more inclined we are to think it doesn't apply to us. So imagine my surprise when anti-infection herbs and detox (DMSA and/or ALA) gave me more global improvement than an entire backpack full of meds. That is hard to grasp until one actually experiences it themselves. It's almost impossible to convince someone else it is a huge issue, that is, until they discover it for themselves.
>
> What do you know about guaicfene (sp?). A since dismissed fibromyalgia protocol uses it. Come across anything in your
> studies and experience?I am not familiar with it.
>
> Inflammation. Beginning to address that slowly. Yes. Have hashimoto's anyways. No doc knows what to do about that :( but inflammatory processes involved.For sure the Stephan Buhner Lyme herbs are called for here. Primarily Japanese Knotweed and Stephania Root. Neither are common, so need to be ordered on the internet. Both are common and widely researched in China and Japan.
>
> Told my new gp about LDN, and she read about it and said, let's go. So, nothing but 20mg daily of norco between me and starting. It won't cure me, but it could help.LDN stands a good chance of being a friend for you. The dosing is tricky. While they say 1.5mg to 4.5mg, new things have been discovered. Even much lower doses have been helpful to some. Me for example, I do good on 1/8th of a 1.5mg capsule, but not so good any higher.
>
> Not looking for a cure anymore. Just well enough. :)Yeah me too. I think when so much time passes there will be residual damage that lingers. But something close to a cure is definitely a realistic goal.
>
> Thanks for your time. How have you
> been doing?
>
> fbCompared to 2 years ago, I've made some notable progress. Two days a week I can actually say were pretty good, one or two days fairly bad, and the other days kind of just the usual crap. Such is the pattern of healing....ups and downs, with the ups taking on more frequency over time. The longer the illness has been entrenched, misdiagnosed, or mistreated, the longer the recovery.
Posted by floatingbridge on April 9, 2011, at 8:21:32
In reply to Re: value of pain management specialist: experience?, posted by Phillipa on April 8, 2011, at 19:01:27
Phillipa,
Low RA factor, 14 I think. Rheumy not too interested, orders a sleep study, says see me in six months. I haven't done the sleep study, but guess I should. Of course, I've been through the stress of quick med trials and tapers, so now O'm too exhausted to even sit up. Noise hurts. My clothes hurt--all my funky knee socks can trigger pain.
MRI eventually. I do have OA. For some, that's very painful. Seems RA is worse. I
don't know that much about it.I'm trying to live each day without
letting my pain dictate my behavior. Like, I might feel like sh*t, the food that my husband cooks may smell intolerable,
noise is like sandpaper, and my discipline is to behave to the best of my ability with
equanimity. Really. To tell my husband, thank you for cooking; I appreciate that you are feeding us (our kid, too). The oil smell is bothering me, so I'm going to leave the room. He's really hanging in there with me, so I count that blessing, though you know me well enough to
have witnessed how grim and despairing I can be.The experince of being so rageful on Lyrica really shook me up. If I am to remain human despite what feels like a verse from Job, I have to try to find some
dignity.Root cause is probably the back. That happened last two months of pregnancy. Then the emergency c-section kicked me good. Never have completely recovered.
After that, hashimoto's found. Have read of pain syndromes that are triggered by surgery, menopause.... Depression :P which preexisted.
fb
P.S. did find BB's advice about adding a little motrin to the tylenol in norco to be true. Does boost effectiveness for me slightly.I'm sorry to hear that about your future DIL.
DO (osteopath) said no physical therapy yet. Slow, flat walking, gentle stretching. And NO bicycle? If he ever divulges why, I'll let you know.
> You might get at the root cause with MRI? Have you have a rheumatoid factor blood test done? As autoimmune diseases do go together. My Son's fiancee got in her car one morning she said and couldn't turn the key due to pain. She went to the doc diagnosed early rheumaoid arthritis and is on shots of Humara and one oral med. She now experiences no pain. But that is in diagnosed rheumatoid arthristis. Regular osteo arthritis can be seen even via xray. I have that. As for antibiotics l00mg twice a day of doxy did nothing for my pain. The amazing thing was the 24 hours of motrin for inflammation that the dentist had me one. The next day no pain. They now do claim that it can cause heart disease motrin that is.
>
> I once years ago when had herniated disc when to a pain clinic and it was excercises. Love Phillipa
Posted by floatingbridge on April 9, 2011, at 9:02:16
In reply to Re: value of pain management specialist: experience?, posted by emmanuel98 on April 9, 2011, at 0:15:18
Thanks, and good to hear. Meditation that has helped is Mindfulness, but during it, I focus on breathing. Ptsd complicates it because intrusive thoughts can interfere. I'd like to find a weekly group. Sometimes, too, a CD of imagery. Hmmm.
Posted by floatingbridge on April 9, 2011, at 9:20:46
In reply to Re: value of pain management specialist: experience?, posted by bleauberry on April 9, 2011, at 5:02:09
BB, sorry your good day/cr*p day ratio isn't better. But I know that two good days is also nothing to sneeze at.
I have a friend w/ lymes. Kicks her, really does. She presented as BPll for years until an unambiguous lymes test. She can't recall anything except an uneventful tick bite (no rash) ten years ago.
My new gp asked me to take this specific lymes test, but since I did a basic one a few years back, and it was out of pocket, declined.
I'll speak to her again about it. I just need to pace myself with doctor visits, $. And my taper :)
Thanks for telling me about yourself.
Did you wiki the guai?
fb
Oh, the feverish feeling is w/o an actual elevation of temperature. My thermo-regulator thing-a-ma-jig seems to be malfunctioning. Cold in 85 degree weather. Raynaud's like hot/cold extremities.
Posted by Phillipa on April 9, 2011, at 19:41:18
In reply to Re: value of pain management specialist: experience? » Phillipa, posted by floatingbridge on April 9, 2011, at 8:21:32
FB very interesting about the pain after surgery as when had the tummytuck to try and avoid diabetes that's when mine also started. I'm thinking something with the muscles being sewn up. The hasimotos also causes inflammtion of thyroid gland. No temp also cold intolerance thyroid. Phillipa
Posted by bleauberry on April 10, 2011, at 5:52:26
In reply to Re: value of pain management specialist: experience? » bleauberry, posted by floatingbridge on April 9, 2011, at 9:20:46
Your symptoms appear consistent with infection. Lyme, who knows? Doesn't matter. Testing? Not worth it. Too expensive and too unreliable. For example, one of the common infections associated with psych symptoms is Bartonella, which is transmitted by cats, ticks, fleas, flies, and dust mites. Tests only target several of the 30+ different mutations. Same problem with the other bugs. They are all masters of deception as well. They trick tests in false negatives frequently. Long story, but fascinating how they have evolved the mechanisms to do that to our immune systems.
Lyme is such a generalized word it is almost not useable. While the primary bug borellia is the one usually thought of, there is babesia, bartonella, and a couple others. All very different but resulting in similar symptoms. Bartonella is the primary suspect however when psych symptoms dominate the clinical picture.
The best testing is probing. Do challenge tests with various substances. Herbs, meds. When something hits you really hard, you know you hit a bullseye. We won't know exactly what the bug is, only that you found something that nails it hard. For me that has turned out to be an otherwise modest benign tea called Pau D'Arco and another called Burdock. People drink these casually just for grins, no big deal, odd flavors, healthy. To me they are like nuclear bombs. The dead giveaway in my case is this....the nuclear bomb does not explode until about 2 days after I've had the tea. Up until then, nothing. That is a clear pattern of a Herxheimer reaction (mass death). Neither are spoken of with any popularity in the Lyme circles, but oh my the antimicrobial potency of these two for me personally, whatever bug mutations I have, is dead on.
There is significant overlap between psychiatric diagnosis, MS, chronic fatigue syndrome, and fibromyalgia. We don't know what the connection is. No one does. But we do know from real world anecdotal evidence that all of them can be majorly impacted with antimicrobial strategies. It is my opinion that a common thread with all of them is stealth chronic hidden infection.
> BB, sorry your good day/cr*p day ratio isn't better. But I know that two good days is also nothing to sneeze at.
>
> I have a friend w/ lymes. Kicks her, really does. She presented as BPll for years until an unambiguous lymes test. She can't recall anything except an uneventful tick bite (no rash) ten years ago.
>
> My new gp asked me to take this specific lymes test, but since I did a basic one a few years back, and it was out of pocket, declined.
>
> I'll speak to her again about it. I just need to pace myself with doctor visits, $. And my taper :)
>
> Thanks for telling me about yourself.
>
> Did you wiki the guai?
>
> fb
>
> Oh, the feverish feeling is w/o an actual elevation of temperature. My thermo-regulator thing-a-ma-jig seems to be malfunctioning. Cold in 85 degree weather. Raynaud's like hot/cold extremities.
Posted by floatingbridge on April 10, 2011, at 11:37:22
In reply to Re: value of pain management specialist: experience? » floatingbridge, posted by bleauberry on April 10, 2011, at 5:52:26
Thanks BB. I'll be seeing my gp this week. I'll run the lymes by her again. She brought it up herself which surprised me.
I'm also bumping into theories that such syndromes have at least an element of chemical sensitivity to them; either the body cannot tolerate a common chemical in the environment that the majority find tolerable, or that the body is not either renewing itself or it cannot pass wastes efficiently. One source I read had found some fibromyalgia patients responded to gout medication. However, it can't be *the* answer or the protocol would be taken up.
I am glad to have an open-minded gp. That helps enormously. I also think Stanford does work with the overlapping conditions you mention, but I haven't looked yet--just bumping into their studies.
Thanks again. I think I did have a bartonella test.
So the big fancy kit doesn't work? Doesn't work always? My gp has a certain lab she likes. The checklist they include seems long.
good day, bad day, somewhere between...? Hope it is good for you,
fb
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