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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 2 to 26 of 26. Go back in thread:
Posted by twinleaf on October 7, 2010, at 16:50:22
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
I had severe lumbar disc disease of many years standing. No-one would operate on it, except to do a fusion, until I found a terrific neurosurgeon at Johns Hopkins. I am completely pain-free now, and so grateful to him. Would this be a possibility for you?
Posted by mrtook on October 7, 2010, at 17:09:22
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
Wow floatingbridge you are certainly going through a rough patch. It is obvious that you are a stonger person than me.
I can't help you with the pain meds you are taking, but I wanted you to know that I know it will get better. Despair is a miserable feeling, but it is *always* wrong. Maybe the pain won't get better, but your ability to deal with it most certainly will.
Posted by Phillipa on October 7, 2010, at 18:32:06
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
FB what do I say? When you say he said not to change meds for the three weeks he's away that means stay on the tramadol and other meds right? We seem to have similar physical issues. Does he feel it's chronic fatigue and fibromyalgia as they are common with thyroid issues. Pain keeps us from doing so much I understand. Next week is the rheumy maybe he can shed some light on this complex situation. I'm sorry. I hate to see you both in emotional and physical pain. Phillipa
Posted by floatingbridge on October 7, 2010, at 19:25:00
In reply to Re: all the king's horses » floatingbridge, posted by Phillipa on October 7, 2010, at 18:32:06
I still feel miserable, bit am no longer crying non-stop. I had the chance to journal--that helps.
I really do feel such shame right now, but that seems to be my default.
Twinleaf, what sort of surgery? Well, regardless, I don't think, at least at this point it's indicated.
Mrtook, I don't recall sharing a thread with you. Your note did give me a sensation of relief. Thank you.
And Phillipa, you are always there for me. We all need just a few things, (besides illness, taxes, and death), to count on. You're a gem.
Your slightly less miserable silly *ss,
fb
Posted by Phillipa on October 7, 2010, at 21:13:01
In reply to Re: all the king's horses, posted by floatingbridge on October 7, 2010, at 19:25:00
FB and I always will be a promise. Love Phillipa
Posted by mrtook on October 7, 2010, at 21:28:15
In reply to Re: all the king's horses, posted by floatingbridge on October 7, 2010, at 19:25:00
I don't think we have every really talked before. I haven't posted here a lot. I hope it is all right I commented.
I just wanted to say that it is important to realize what your pdoc said. It is not a personal failing of yours it is the fact that the med is not working. I hope that you feel better I have seen friends struggle with similar problems so I can begin to imagine the difficulty.
Posted by Maxime on October 7, 2010, at 22:43:34
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
When you are in pain it's so easy to increase the dosage of what you take for pain. At least you came clean with him and I think that was very brave of you.
Does he want to give you Cymbalta instead of the Tramadol? I know that Cymbalta is good for pain, but I don't think it's good enough for what you describe.
A few weeks ago I was abusing Dexedrine. Then I finally got my prescription for Adderall XR. I gave in the rest of my Dexedrine to the pharmacy and told them to erase the repeats from my file in case I decided to fill it in again. So if you are still on the Tramadol, you need to put in actions to protect yourself. Maybe have someone hold onto the med and only dispense your dosage FOR THE DAY and no more. I hope you are able to continue with this med because I know it actually helps the pain in your body.
Take care.
Posted by twinleaf on October 8, 2010, at 13:32:38
In reply to Re: all the king's horses, posted by floatingbridge on October 7, 2010, at 19:25:00
I had had severe back pain for a long time. Three discs had ruptured and I developed a lot of arthritis in that area- bone spurs and narrowing of the spinal canal. This was a relatively young neurosurgeon who knew how to remove the excess bone - something most older surgeons apparently did not know how to do. I am fine now, and think very, very highly of Hopkins, as you might imagine. I don't know if your situation is anything like mine or not.
Posted by floatingbridge on October 8, 2010, at 13:33:58
In reply to Re: all the king's horses » floatingbridge, posted by Maxime on October 7, 2010, at 22:43:34
Hi Maxie,
That is sound advice. I could have taken extra yesterday, but really thought about who I wanted to be and, at least for now, had the ability to choose to rebuild trust in myself (which was just about smashed yesterday) and between my physiatrist (not my pdoc) and myself.
To his credit my physiatrist/back doctor did not take my pills, count them or cancel refills. I don't think he in anyway attempt to humiliate me in word or deed. He told me to take no more than five tablets per day and supplement with norco as needed (he does know I worked to get off norco because I don't care for it, though it actually is more effective for pain). I see him again next Thursday. He's talking about xrays for my hands now and further tests. I am, finally, seeing a rheumatologist the day before, one that this doc seems to respect. (You know how docs are. Just like the rest of us, forming cliques.)
If you know anything about cymbalta or savella, would you babble me? I am so anxious about trying another drug after My reaction to straterra.
Thanks alot, Maxime. Somehow I've started shortening your name to Maxie.
Posted by floatingbridge on October 8, 2010, at 13:40:27
In reply to Re: all the king's horses, posted by mrtook on October 7, 2010, at 21:28:15
Mrtook, I am very thankful you posted. I was very low, and your post gave me a lift--that was very kind :)
I talk to everybody all the time--I'm sure to some occasional annoyance. Oh well. Since this is a forum, that's alright, isn't it?
I look forward to future threads together.
> I don't think we have every really talked before. I haven't posted here a lot. I hope it is all right I commented.
>
> I just wanted to say that it is important to realize what your pdoc said. It is not a personal failing of yours it is the fact that the med is not working. I hope that you feel better I have seen friends struggle with similar problems so I can begin to imagine the difficulty.
Posted by bleauberry on October 8, 2010, at 16:41:53
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
Cymbalta or Savella would be logical choices from a clinicians point of view to address the symptoms (but do nothing to battle the cause).
A few people at other boards with your symptoms were helped greatly by Parnate.
To end the cause of the engulfing pain and fatigue will require antibiotiics. Don't expect that to be the most popular plan of action many doctors are going to want to do, but it is what to do.
You don't need brain drugs. You need antibiotics. IMO.
Posted by Maxime on October 8, 2010, at 22:45:52
In reply to Re: all the king's horses, posted by bleauberry on October 8, 2010, at 16:41:53
Hey Bleauberry, why antibiotics? What type of infection do you think she has? Curious.
Posted by sigismund on October 9, 2010, at 2:30:04
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
I ruptured a disc a long time ago,then had a laminectomy which was effective, but my back was never right, I'd have relapses, often for long periods, where I'd lie down for 6 weeks, and there were various neurological symptoms.....tingles, numbness and weakness.
Around 4 years ago I started doing Pilates and since then the resilience of my back has been *greatly* improved (but only gradually).
I don't really suggest you do this, I understand you're not well, but I just mention it, and would also mention that you come across as a stand out lovely person.....the world may well need (and if not) you may well be justified in your response to life.
Posted by floatingbridge on October 9, 2010, at 2:40:23
In reply to Re: all the king's horses » floatingbridge, posted by twinleaf on October 8, 2010, at 13:32:38
Twinleaf, that's very brave of you. Your trusted in your surgeon and your pain level must have been great.
No one here is talking surgery. A pain disorder maybe. Of course, I do keep saying something mechanical doesn't feel right, which does sound silly because I have multiple torn, herniated discs. Haven't been checked for stenosis. Was checked for lystosis which was found to be slight--but feel like I want do-overs. I was asked to bend my back a certain way, and that isn't the way that makes it feel unstable or 'cliclk' around.
Gosh, that operation must have been like getting a second chance at life. Thank goodness for your excellent success :)
Posted by floatingbridge on October 9, 2010, at 2:53:24
In reply to Re: all the king's horses, posted by sigismund on October 9, 2010, at 2:30:04
Sigi, you caught me online--my darn insomnia. It's 12:45 a.m. I wonder what time it is where you are.
All I can say is that is a very sweet note. Thank you :) I am much better all the way around (well not health-wise). I saw my pdoc and he is pretty wonderful.
Who knows why, but I go from zero to
sixty in seconds--always have, which made childhood difficult. Really high distress and the slowest recovery time ever. Oh well.I have been seeing a yoga therapist--a private yoga lesson. I haven't tried Pilates.
Walking, too.
Thanks, Sigi.
Posted by floatingbridge on October 9, 2010, at 3:09:21
In reply to Re: all the king's horses, posted by bleauberry on October 8, 2010, at 16:41:53
Bleauberry,
Even my pdoc would agree with about not needing more brain drugs, and he is not at all keen on cymbalta or savella for me. He knows something in addition to depression is going on. You might have difficulty convincing him about antibiotics, buy he is open-minded....
Stanford is doing two studies of interest--fibro and T3 and fibro and LDN.
I visit a rheumatologist next week. We'll see if he thinks he can work with me. Even though I've had a number of tests (negative except for hashimoto's) there's more to come.
I have had western blot (negative). If you think of any essential tests for infectious agents, please let me know.
Thanks for your opinion. I appreciate it.
Posted by floatingbridge on October 9, 2010, at 3:26:36
In reply to all the king's horses, posted by floatingbridge on October 7, 2010, at 15:30:35
Had a very good emergency session today and feel very relieved. He emphasized something the forum here did. Sometimes people in pain do that. He explicitly said he trusts me with substances. His term was something like the train went off the track. What? He explained it's part of the learning and recovery process (we speak of therapy as working on recovery).
He really helped me regain a feeling that I am an o.k. person.
It was work, though ;)
Posted by bleauberry on October 9, 2010, at 9:10:00
In reply to Re: all the king's horses » bleauberry, posted by floatingbridge on October 9, 2010, at 3:09:21
Cool. Hey, about LDN...you don't need to wait for more formal research. Thousands are already doing this and the ancecdotal evidence from participating clinicians and patients is overwhelmingly positive. It will take years for the slow researcher process to catch up with what is already known. That is, pain, fatigue, brain fog, and modestly mood are significantly improved in a vast majority of patients who try it. There is practically zero risk and practically zero side effects, being that the dose is only 1.5mg to 4.5mg....the smallest size pill is 50mg, just to put it in perspective. LDN is a no brainer. You just need the doc to call in a prescription to a compounding pharmacy. Good ones are listed on the LDN home page, as well as fillers to avoid and why.
It will likewise take years or decades for established medicine to catch up with the overwhelming anecdotal evidence that chronic infections are at the root of symptoms like yours. Since people are prescribed Doxycyline for months for simple things like acne, it is a no brainer to try it and see what happens It is wide spectrum and covers a lot of bases. You do not need to know in advance what infection you are dealing with, and in fact reliable testing for any of them are pitifully useless or nonexistent. Lyme for example often shows negative. That is, until after the patient has been on Doxy for a while....now there has been enough weakening and death of the organism to bring it out of hiding so the immune system and tests can see it...and thus antibodies to see that formerly were not prior to the antibiotic.
The primary purpose of the antibiotic is to make a diagnostic challenge. The reaction to it provides more useful data than 1000 tests. A Herx reaction indicates massive death of something is happening. Some people do not experience a Herx, but just improve. That's good indication a bacteria is involved. Some get nothing except common side effects such as diminished appetite or loose stools...that''s a pretty good indication a bacteria is probably not involved.
Doctors like to know in advance what they are treating before they attempt to treat it. With chronic pain and fatigue, that is impossible. Everything is experimental, including pain drugs, psych drugs, supplements, herbs, everything. The best minds and the best doctors cannot possibly know in advance where your symptoms are coming from. Thus it makes no sense to adhere to that strategy. It makes complete sense to do diagnostic challenges to gather information. Doxycycline happens to be one of several very good for that purpose.
These kinds of infections....mycoplasma, lyme, unknown....keep in mind this stuff is unseen and evolving/mutating at a faster rate than science can follow....clear slowly. They are deeply embedded in collagen tissue and glands and intracellular. Once a diagnostic challenge shows that a bacteria is involved, it typically takes 3 months to 15 months to completely resolve.
Here is an interesting story. My Lyme doctor did not set out to become a lyme expert. It happened by accident. He was a pain and fatigue specialist. Over the years he noted that most of his patients improved or remitted when on antibiotics for other unrelated reasons.
But Lyme is only a small part of the picture. There are dozens of possible enemies within. Here's an interesting story. A patient came in with pain and fatigue. Upon verbal questioning of history, the patient had no recollection of tick exposure. But it looked like Lyme. The patient did however remember getting a scratch on a barnacle while swimming, and that scratch developed a rash that took a long time to heal. The pain and fatigue set in after that. With no other available evidence, the patient was tried on Doxycyline with only a mere suspicion that maybe there was some weird bacteria involved with that barnacle scratch. Three months later the patient was 100% cured. Had a doctor wanted concrete proof, or a positive lab test, that patient would still be sick today.
We have to go on the best clues we have at the time. In your case, pain and fatigue point to bacteria. You may never know what bacteria or where they came from. And it doesn't matter. All that matters is you get better. Antibiotics are your best chance of doing that. LDN is also strongly supportive. It will not likely cure the problem, but has a reputation of stopping its progression and relieving symptoms.
You mentioned the Western Blot. That is the most accurate test at this time, but is still woefully inadequate. False negatives are frequent. Using a negative on that test to determine your course of action is about the same thing as sentencing an innocent person to a life in prison with no chance of parole.
The most accurate Western Blot is one that is done AFTER antibiotics have had a month or more, and then a couple weeks break. Then the test. Now if there are going to be antibodies, they will be there.
There is only one lab that specializes in the Western Blot and Lyme. They have the expertise, experience, and equipment that none of the other labs do. Choosing any other lab is begging for a negative result. The only lab you should use for a Western Blot is Igenex.
But even my lyme specialist rarely relies on the Western blot. It can help paint the overall picture, but is by no means the primary tool for diagnosis or course of action. Symptoms and history are what determine the course of action. He has seen the majority of pain and fatigue patients improve on antibiotics, and it's just that simple. Most may never know what they had. All they know is they got better on antibiotics. His favorite most successful approach in pain/fatigue is Tetracycline for months, followed by small ever increasing doses of Clindaymicin added to it until symptoms are gone. Patients don't just feel better, they are 95% or more cured.
Many of the non-lyme mysterious bacterial infections look exactly like lyme...pain, fatigue, psychiatric. And of course they will test negative for lyme, but are equally as devastating to your life as lyme. So if nothing else, a negative test for lyme means you might no have a lyme bacteria but instead some other kind of bacteria just as bad. No matter, it all points to the same place....antibiotics.
You mentioned T3. That has potential. One thing these infections do is secrete poop, pee, and toxins that clog receptors. You can have plenty of thyroid in your lab test, but hardly any getting into their receptors. T3 competitively displaces those toxins. Another easy cheap option to do try first is small amounts of Maca root powder, which stimulates/modulates/balances adrenal and thyroid action from the hypothalamus/pituitary glands all the way down to the adrenal and thyroid glands themselves. Got cold hands? See what a pinch a day of Maca root will do to raise your body temperature. Warm hands. Directly supportive of thyroid and adrenal.
> Bleauberry,
>
> Even my pdoc would agree with about not needing more brain drugs, and he is not at all keen on cymbalta or savella for me. He knows something in addition to depression is going on. You might have difficulty convincing him about antibiotics, buy he is open-minded....
>
> Stanford is doing two studies of interest--fibro and T3 and fibro and LDN.
>
> I visit a rheumatologist next week. We'll see if he thinks he can work with me. Even though I've had a number of tests (negative except for hashimoto's) there's more to come.
>
> I have had western blot (negative). If you think of any essential tests for infectious agents, please let me know.
>
> Thanks for your opinion. I appreciate it.
Posted by bleauberry on October 9, 2010, at 9:35:09
In reply to Re: all the king's horses » bleauberry, posted by Maxime on October 8, 2010, at 22:45:52
> Hey Bleauberry, why antibiotics? What type of infection do you think she has? Curious.
I have no idea. And it doesn't matter. Mycoplasma, lyme, whatever, who cares. The treatments are the same. No doctor would know either. The organisms are further advanced than our wisdom and technology at this time. They've had thousands of years of evolution to develop cunning methods of avoiding detection by immune systems, disabling immune systems,, deceiving immune systems, and thus evading the best tests we have....we frankly aren't very good at identifying their presence. We can only see their devastation.
It's just that my doctor who is a pain/fatigue specialist sees more patients cured on antibiotics than anything else. We're talking 95% cure, not just improving or getting better. All other treatments are only supportive, but not curative. All other treatments have a poor track record. Antibiotics work. The right ones. They have to be intracellular and cyst busters.
Most patients who get well never know what they had. All they know is they got their lives back on antibiotics. That's all that matters.
The poop, pee, and toxins of unseen unsuspected bugs clog receptors. No wonder we see the fatigue, pain, and psychiatric manifestations. No wonder it takes LDN (displace toxins from opioid receptors), T3 (displaces toxins from thyroid receptors), forskolin (displaces toxins from adrenal receptors), or ultra high dose psychiatric meds (displaces toxins from neurotransmitter receptors) to see symptomatic improvement (but not cure or slowing of disease). It might take 60mg to 80mg Lexapro instead of 40mg, to do what 40mg would have otherwise done without the presence of the toxins. No wonder we see some ultra sensitive psych patients to low doses....the serotonin can't get where it is supposed to go, so instead goes where it is not supposed to go, and thus intense sensitivity.
So Maxine, who knows what's involved. All I know is, my doctor sees most lyme and non-lyme patients of pain and fatigue get cured on antibiotics. I guess science will fill in the gaps in coming decades, but that doesn't do us any good now. Antibiotics are a relatively safe approach with high potential. Much safer than other common options and with much higher potential. More importantly, the end result goal is symptom resolution, not just symptom suppression.
Posted by twinleaf on October 9, 2010, at 9:56:00
In reply to Re: all the king's horses » floatingbridge, posted by bleauberry on October 9, 2010, at 9:10:00
What bleauberry says is well worth trying. I added T3 to the T4 I had been taking for years, and noted an immediate improvement. (the T3 is very short-acting, so one needs to take it several times a day). I don't have any experience with a trial of antibiotics, but I think it would be much more useful than adding yet another psychotropic at this point. Ruling out a hidden infection, such as Lyme or babeiosis, would be important and safe to do.
My understanding of disc disease is that it follows a similar course for everyone First the discs bulge for a number of months or years; finally they rupture. Gradually, as the years go by, overgrowth of the adjacent bones becomes the main problem.This includes spinal stenosis. narrowing of the foramina where the spinal nerves exit, and bone spur formation. All of this excess bone can press on nerve structures and cause pain and eventually weakness. Not everyone ends up having severe disc disease, of course. Many people just have bulging discs, which hurt occasionally, for their entire lives. But once the discs have ruptured, the process of developing excess bone starts.
Have you had a recent MRI? Getting one, and getting it read by a (younger) neurosurgeon should give you all the information you need. I emphasize "younger" because they are trained in minimally invasive surgery and bone remodeling techniques. The operation to avoid is a fusion, because it leaves the spine abnormalities unchanged and just plasters more bone on the outside.
Stanford is considered to be the finest place in the country to receive neurosurgical training. When you get some of the many other things out of the way, maybe you could get an opinion there?
Posted by Maxime on October 9, 2010, at 16:24:20
In reply to Re: all the king's horses » Maxime, posted by bleauberry on October 9, 2010, at 9:35:09
Wow, that was a helpful post. When someone has depression the first that is tested (or should be) is the thyroid. Maybe before prescribing psych meds antibiotics should be the next thing to try.
Thanks!
Posted by Maxime on October 9, 2010, at 18:11:53
In reply to pdoc + client repair what the king could not » floatingbridge, posted by floatingbridge on October 9, 2010, at 3:26:36
I am so happy that the session went well. I am glad he didn't judge you. And mostly I am glad he didn't take away your meds.
I guess that you always need to be honest with him even when your train goes off the track. Otherwise, there could be a train wreck.
Hugs, Maxie
Posted by Phillipa on October 9, 2010, at 19:24:42
In reply to Re: all the king's horses » Maxime, posted by bleauberry on October 9, 2010, at 9:35:09
Tested positive and rocephin IV via pic line in hospital after first taking doxy for l0 days quite a while back. Then biaxin xl for two years on three months at a time and three off. Still test positive years later and took doxy for 8 weeks nothing. But my back exrays do show spondalosis, bone spurs, curvature of spine, and some disc already fused on own. And dex scans show hips at a -3.1 & spine -2.6 I think so it wasn't the lymes or any other bacteria for me. Still got the hasimotos also. So for me it doesn't hold up. Phillipa
Posted by Phillipa on October 9, 2010, at 19:33:39
In reply to pdoc + client repair what the king could not » floatingbridge, posted by floatingbridge on October 9, 2010, at 3:26:36
FB so glad it went so well for you. I know how important that is to you. Love Phillipa
Posted by floatingbridge on October 10, 2010, at 16:26:55
In reply to Re: all the king's horses » bleauberry, posted by Maxime on October 9, 2010, at 16:24:20
I'm too tired right now to follow the thread :(
I'll read tomorrow--right now I want to thank Bleauberry for leaving such a generous post.
((Bleauberry))
This is the end of the thread.
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