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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 18 of 18. This is the beginning of the thread.
Posted by bleauberry on June 13, 2013, at 5:17:19
I just wanted to encourage everyone, hang in there, be smart, be creative, and you can beat it. On the flip side, I can almost assure you that if your primary means of treating your symptoms is coming from a psychiatrist, the odds of getting better are slim.
What I have discovered in my journeys over 20 years dealing with severe depression and pretty much all the psychiatric symptoms, is that the primary places to be looking for improvement are in these areas....wide spectrum antimicrobial attack, toxin removal, and food choices at the grocery store.
Various herbs, rotating around, can handle most of the antimicrobial thing. In longstanding known infections such as my chronic Lyme, prescription antibiotics may be needed. In this topic we are talking months or years, not days or weeks.
Toxin removal is excellent with the prescription powder Cholestyramine mixed in water or juice. It attracts and binds any fat soluble toxins and covers a whole wide range of possible problems.
Anti-inflammation is important, Advil at a minimum, but herbs better.
Gluten, GMO corn....bye bye. Load up on lean proteins, veggies and fruits. Junk food allowed only one day per week.
Psych drugs, in my experience, are sometimes helpful for immediate symptoms, sometimes not, but counting on them for remission is setting oneself up for failure and disappointment.
Anyway, 20 years of all the psych meds except Nardil, 12 specialists many were pdocs, and $35,000 later, and a ton of suffering later, I am probably 70% improved without any drugs.
The most interesting thing I discovered is that the symptoms of psychiatric nature were the ones to improve the most. Pain improved a lot too, but the overall weakness is still there. They say that is the last to go. Depression pretty much gone most of the time. When I do get it, it is mild and distant and short.
Just sayin. If you want to get better, I mean really really want to get better, open the eyes and curiosity beyond the pdocs prescription pad. He really can't do much for you other than an organized guessing game with outcomes that are generally not all that great.
Sure, we do see amazing success stories once in a great while from someone on a magic psych drug, but that's about the same thing as expecting to win at the Las Vegas table....might happen, but not likely.
Weird, I never would have thought, but now that I can look back and reflect on it all, I believe the most useful drugs are the MAOIs, antipsychotics, ritalin, and vicadin. All of the reuptake inhibitors....not cool, long story....but in that arena the only thing that should be considered are strategies that involve reuptake of both NE and 5ht in fairly equal proportions. That rules out monotherapy with any ssri, rules out effexor, rules out cymbalta.
Posted by SLS on June 13, 2013, at 5:34:55
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
That's an interesting set of beliefs.
- Scott
Posted by SLS on June 13, 2013, at 6:07:19
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
How selfish of me.
I neglected to ask you how you are doing. You were gone for quite awhile. I hope you have attained a state of remission that allows you to live the life you would like to lead.
- Scott
Posted by Lou Pilder on June 13, 2013, at 7:13:35
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
Bleau,
You wrote,[...if your primary means of treating your symptoms is coming from a psychiatrist, the odds of getting better are slim....psych drugs..counting on them for remission is setting oneself up for failure and disappointment...the pdocs prescription pad..He really can't do much for you other than an organized guessing game...]
Posted by Phillipa on June 13, 2013, at 10:09:27
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
Too bad not after just having a complete physical first in 7 years or more that after extensive blood work that cholesterol was high @ 235 but HDL were high @99 & weirder still LDL high also at 124. But when topic of lymes came up doc was quite verbal in talking about how more than 2 weeks of antibiotic treatment is overkill and quite dangerous with all the antibiotic resistance to diseases. How prevalent that MRSA & flesh eating bacteria is. But the biggest problem for me only was the bone deterioration due to old age. So no med is going to fix me. It's physical activity to the best of my ability. I'm glad you found what works for you. Still working? Phillipa
Posted by 10derheart on June 13, 2013, at 12:24:56
In reply to Re: Beat it, posted by Phillipa on June 13, 2013, at 10:09:27
Those numbers are not so bad, except for the LDL. Mine is around there, too. How are your triglycerides? The total is only a tiny bit high....how many hours did you fast? I always notice 10 vs. 12 hours seems to matter, and also whether my last meal before the fast was high in sat fats...
Was that a typo.....? I know you know that HDL is better the higher it is...over 50 at least is what many docs look for in women. If yours is 99, way to go! I need to get mine past 39, but with my laziness toward exercise and carrying so much extra weight, it's unlikely (used to be 55+ years back, before I was fat). It's my triglycerides that are so worrisome...creeping closer to 300 now :-( Fish oil in high doses and dietary changes refuse to touch it any more. Niaspan at high doses slightly helped for a while, then pooped out. Dr wants me on Tricor but so far I am resisting another med. It worries me but apparently not enough to lose weight. :-(
I know you are a healthy weight so you may be fighting genetics with the cholesterol. Sucks.
sorry,bleauberry....I'll stop hijacking now. SO glad you have found what works. I have always learned a lot from you here.
Posted by sigismund on June 13, 2013, at 13:30:11
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
Well, I would just like to chime in with the fact (ascertained by both DMPS and DMSA challenge urine tests, as well as the hair thing) that somehow or other my mercury levels are just about off the scale, and there is lead and (interestingly) thallium at toxic levels.
It is somewhat amusing to be poisoned by rat poison, especially one with such an interesting tradition.
It could be from anything....fillings, fish, Chinese herbs, toxic sprays in the past where we grow herbs. You just wouldn't know.
Perhaps my case is not so unusual?
And chelation is a much contested area.
Posted by Phillipa on June 13, 2013, at 20:50:38
In reply to Re: Beat it » Phillipa, posted by 10derheart on June 13, 2013, at 12:24:56
l0der no not a typo. HDL 91. Triglycerides 99 with <150 being optimal. Which is why confused about having also LDL high? Says the ratio Chol/HDL is 2.6. No reference range given? That's what I think also that the total cholesterol is genetic as father & Grand father both died of heart attacks no previous indicators at age 72. I sure can't exercise more. And weight 131 at 5'4 1/2". Bmi was very low normal. Maybe should google the ratio? Phillipa.
Posted by Chris O on June 15, 2013, at 3:25:52
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
Bleauberry:
That is totally awesome that you got 70% remission without using any of the psych drugs. Heck, I'd take 50%, 30%, 10% and think it was a miracle. I don't know your complete story (have you seen you on these boards off and on when I visit), but perhaps something triggered your depression later in life that made it "beatable?" For me, I suspect there is at best an incorrectable (without medical intervention) environmentally produced change in my brain from the time I was born (due to my mother's severe mental health issues) and at worst, a genetic predisposition to anxiety and depression. I wish that it weren't so. I certainly wish that my many forays into the world of herbs, supplements and "alternative" treatments (yoga, tai chi, acupuncture, etc.) did anything except a big fat nothing. But that's the way it's been for me. Force me to work and take care of myself, and I'm completely immobilized by paralyzing fear. I can't beat myself up anymore about this, as I am already completely emasculated and humiliated. Not on anything at the moment, but am going to try Nardil soon. Most of the SSRIs have failed me and I just can't go on like this much longer. Good luck to you.
Chris
Posted by SLS on June 15, 2013, at 5:06:51
In reply to Re: Beat it » bleauberry, posted by Chris O on June 15, 2013, at 3:25:52
> Most of the SSRIs have failed me...
Which ones did you have success with? Paxil?
What happened? Poop-out? Discontinuation?
> and I just can't go on like this much longer.
Nardil is a good choice, but by itself, it is not a last resort. Polypharmacy often works miracles, and should not be excluded from consideration just because you are taking an MAOI. For me, adding nortriptyline and Lamictal to Nardil converted non-response to a partial, but significant response - perhaps 35%.
Today, I am significantly better than 35% improved on:
Parnate 80 mg/day
nortriptyline 150 mg/day
Lamictal 300 mg/day
lithium 450 mg/day
Abilify 10 mg/day
prazosin 20 mg/day
minocycline 200 mg/dayWhat kind of depression do you have? How old were you when your illness began? Family history?
I have a chronic bipolar depression for which several antidepressant drugs induced mania. Otherwise, mania does not occur spontaneously. My sister has a soft-bipolar presentation with GAD. Nardil worked wonders for her. I have a history of childhood trauma and neglect. I have been most responsive to tricyclics and MAOIs. However, prazosin now produces a robust antidepressant effect that has me thinking very seriously about returning to work. It has been 23 years since I worked last. Minocycline has neurological and psychotropic effects in addition to its antibiotic properties. It is being studied for depression, bipolar depression, and several neurological disorders. It produced an improvement in the first week. Each of the drugs I am on perform a function not duplicated by any of the others. The role for each drug has been tested by a trial discontinuation. I may try to eliminate Abilify because it produces weight gain and high triglycerides. I doubt that I will be able to maintain my improvement without it, but it is a logical move.
If you ever reach a point where you feel doomed such that suicide seems inevitable and you begin making plans, it is probably time to visit the hospital. Zyprexa is probably the most rapid acting emergency drug, although lithium can help, too.
"Natural" treatments with some scientific evidence for efficacy include fish oil EPA (OmegaBrite), NAC (N-acetylcysteine), vitamin D3, S-AMe, L-methylfolate (Deplin), St. John's wort, curcumin, and rhodiola rosea. I am not well-versed in the use of other herbal, vitamin, or food supplements.
Good luck.
- Scott
Posted by Chris O on June 15, 2013, at 12:52:12
In reply to Re: Beat it » Chris O, posted by SLS on June 15, 2013, at 5:06:51
Scott:
Thanks for interacting with me. I've interacted with you a bit in the past, and I've read your thoughtful replies and comments many times, so I am somewhat familiar with your medication regimen. It's hard for me to explain my entire history here, but I'll give it a try. I'm 46 years old, male, have struggled with chronic anxiety (and depression) for my entire life. My mother also struggled/struggles greatly with anxiety and depression. She basically raised me alone, and there was a great deal of inappropriate boundary crossing, from which I am still recovering. In other words, I still feel like I am sorting out who I am due to the biological/psychological damage she did to me. In terms of my anxiety, it verges on panic when I am forced to take care of myself. I am currently married, not working in any serious way, and my wife is taking care of almost everything. It is humiliating in many ways, not the least of which that I don't think I should be in this marriage as--while it provides me with financial security--it is not meeting my "true self" needs. On the rare moment that I stand up for myself, it is a surprise to my wife, and she thinks I am being a jerk (which I often believe, the way I believed it growing up with my mom). I cannot stand this situation any longer.
I lived with my mom pretty much until I was 22 (greatly diminishing any enjoyment or growth I should have been getting out of going to college), at which time I was able to conquer my panic disorder enough to move out. I moved back in within four months of graduating from college, was living with my mother again for a horrible year and a half, was somehow able to get a job, moved out at 24, but ... just have been crippled by my anxiety and panic disorder all the way.
I was in group therapy for much of the 1990s, trying to conquer my anxiety and panic through cognitive therapy and all kinds of activity. But nothing really changed/changes for me. In the late 1990s, I gave in (that's the way it seemed to me at the time) and started taking a combination of Celexa and Wellbutrin (minimum doses of 20mg, 150mg). I switched to Prozac and Wellbutrin, same doses, after 6 months. (The Wellbutrin was only added to combat fatigue at the time as Wellbutrin alone would probably stimulate panic in me.) Anyway, I got some benefit from those drugs at that time, but I also lost my high school teaching job while on them. (Not that I was able to manage classes well with my disorder anyway.)
Over the past decade, I had long-term trials of high dose Prozac (100mg/day), Luvox (450mg/day), Lexapro (40mg/day), Paxil (75mg-100mg/day), Serzone (1200mg/day), Vibryd (40mg/day). I also tried Neurontin for a few weeks, but I didn't get anything from it. I tried other drugs--Effexor, Cymbalta, Remron--for shorter periods and discontinued for one reason or another. Benzos do nothing for me except gloss over my surface symptoms. I need a deep brain change. My D and B12 are chronically low, so I have supplemented quite frequently and fish oil does do a little something for me, though I've been paranoid about taking it ever since Fukushima. (Ah, the beauty of anxiety disorders.) There's a lot more to say, but I don't want to write a novel. Basically, I've been contemplating taking nortriptyline or Nardil for the past year, but haven't done it yet. I seriously doubt that I am bipolar (mania is not even in my vocabulary). It is just low grade panic and inability to manage anything once the pressure is on. It's like a haze over my personality, holding me back. If I had to guess, it's my mother's "hold back my true self" spirit hovering over me in the guise of biology.
I'll stop for now. Glad to hear your current cocktail is having some results. I'd just like to be working and taking care of myself again, not living in this humiliating world of subservience and codependence. It is, on many days, too much for me to bear.
Chris
Posted by SLS on June 15, 2013, at 14:04:24
In reply to Re: Beat it » SLS, posted by Chris O on June 15, 2013, at 12:52:12
Hi Chris.
That was a wonderful presentation. It helped to reinforce much of what I have learned about myself through contemplation and experience. I was married to a stunningly gorgeous woman whom I could not fall in love with, no matter how hard I tried. At first, I thought that it was the depression that was preventing these feelings from emerging. However, I was committed to follow the idyllic script of society, even though it never felt right to me. My ex-wife was more than intelligent enough for me, but our differences in constitution left me feeling empty. She never really knew me. I never really knew her. She was my caretaker. She handled just about every responsibility of running the household. I was employed at the beginning of the marriage, but depression eventually defeated me. My manic reactions to MAOIs didn't help.
The measure of achievement lies not in how high the mountain, but in how hard the climb. The measure of success lies only in how high one feels he must climb to get there.
I say that to myself to remind me that I have not failed. It is not my fault. I have survived. I always do the best that I can. I have achieved much. To try and fail is still a success.
My suggestion to you at this point is to explore the use of prazosin as an adjunct in the treatment of your depression, anxiety, and developmental PTSD (history of abuse, neglect, and chronic trauma).
http://www.positivehumandevelopment.com/developmental-ptsd.html
If you do choose to go with Nardil, were you planning to combine it with nortriptyline? What about combining Nardil with clonazepam? If you do decide to add prazosin, it is advisable to start at 1 mg/day given at night for a few days in order to avoid hypotension and dizziness. You can then begin increasing the dosage as tolerated beginning at 3 mg/day. It seems to me that the dosages used in PTSD studies range between 6 - 12 mg/day. I do not do well at dosages below 20 mg/day. The manufacturer indicates that a dosage of 40 mg/day is safe.
- Scott
Posted by brynb on June 16, 2013, at 16:57:19
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
Good post, bleauberry.
I wish I didn't have to rely on psych meds for partial remission, but they have been instrumental in helping me.
I have yet to try MAOIs, but Nardil is always on the back burner for me if need be. I'm in total agreement with you about looking at mental illness from different angles, and for those dealing with psych docs, only the ones who think out of the box have been helpful to me. I currently take Tramadol, and it's prescribed by my psych doc. You mentioned Vicodin; I think opiates (any med that works on the Mu receptor) are a really great option for depression.
I agree with you about diet as well. Such an important factor.
Anyway, great to hear you're well!
-b
Posted by Jeroen on June 17, 2013, at 12:43:29
In reply to Beat it, posted by bleauberry on June 13, 2013, at 5:17:19
i had a response to eardrops panotile a while back
been tryng to contact you ever since
depression was eliminated but it doesnt work anymore do you think that nasfy virus has adapted again?
Posted by bleauberry on June 19, 2013, at 14:31:55
In reply to to bleauberry urgent, posted by Jeroen on June 17, 2013, at 12:43:29
Well, we don't know if it was a virus, other bug, or none of the above. What we do know is that anytime you have tried an antimicrobial agent, beginning way back with amantadine, you had a momentary improvement. And it didn't last. Did you know the antipsychotics have some antibacterial properties? Maybe seroquel had more power in that regard than the others? Anyway, they do something for you but it only works for a short time.
Ok, so right now I'm having a hard time on the 3 antibiotics I am taking. One of them is Flagyl. I feel crappy enough that I wanted to do some research to see if I could figure out why.
Here is what a doctor says he sees as a common pattern. Basically it says you just scratched the surface but you had a lot more distance to go....the meds were stopped way too soon, most especially the minocycline. Should be looking at minimum 3 month to 6month timeframe at double the max dose. That's what it takes. The grass really is greener on the other side, it's just not fun getting there.
Of considerable interest are those common diseases where spirochetes have been conjectured: multiple sclerosis and rheumatoid arthritis. Lyme disease is in a sense a model of a disease that resists elimination by popular antibiotics.
What To Expect When Taking A Nitroimidazole
The Lyme patient's response to taking Flagyl, or similar, is rather complex. On the basis of talking with about 100 chronic Lyme patients who have taken Flagyl and closely observing three Lyme patients on Flagyl/tinidazole I think there is a general pattern.Days 1-6 Mild worsening of symptoms - aches, pains and general malaise. There are often palpitations and some difficulty breathing.
Days 7-10 The honeymoon. Patients feel dramatically better, often with all pain gone, energy returns.
Days 11-21 Unfortunately the honeymoon does not last. While the joint and low back pain may go away, malaise and neurological problems come on with vengeance. Profound lack of energy and motivation.
Days 21-33 Depression. For no known reason deep, deep depression starts about now. It may lead to suicidal thoughts and be very stressful for family members. Being forewarned helps greatly so Lyme patients should warn all those around them before it happens. Depression typically lasts about 10 days. Some Lyme patients react badly to anti-depressants so there should probably be avoided.
Warning! Days 40-60. A number of patients have experienced shortness of breath and palpitations at about 6 weeks. These events may require an ER visit. This may be due to a sudden die off of the bacteria.
Days 34-60 Gradual improvement, especially in neurological status, manifest as "good days". Eventually the "good days" become seven days per week. Profound fatigue remains however and will not abate perhaps for six months. At 60-90 days there should be no symptoms other than fatigue. Time to take a vacation!
> i had a response to eardrops panotile a while back
> been tryng to contact you ever since
> depression was eliminated but it doesnt work anymore do you think that nasfy virus has adapted again?
Posted by bleauberry on June 19, 2013, at 14:46:18
In reply to Re: Beat it » bleauberry, posted by SLS on June 13, 2013, at 6:07:19
Thanks Scott! I'm not sure any of us will ever reach the kind of remission we dream of. Even if we did, there is no turning back the clock on age. What I have found is that focus on the journey itself is more important than focus on the desired end.
Since you asked how I am doing, I'm ok. Psychiatric symptoms are about 70% gone generally overall, not even an issue a lot of times, and there are some days that are pretty close to remission. The good days have become more frequent in the last few months. I am constantly baffled by how long it can take. It took me 2 years before I saw any psychiatric improvement at all.
Right now one of the 3 antibiotics I am on is Flagyl which is known to cause an unexplained deep depression, which feels like it is on the edge but doesn't quite happen. Compared to any time 3 years ago, I am well past the point of what a researcher of an SSRI would call a responder. 70% is good. Shootin for more though, always.
The biggest area of improvement came in the anhedonia/motivation/dysthymia stuff. Which were my worst symptoms all along, and the ones none of the psych meds were able to help much.
Scott what meds are you on these days and how are you doing? It is good to talk with you again.
> How selfish of me.
>
> I neglected to ask you how you are doing. You were gone for quite awhile. I hope you have attained a state of remission that allows you to live the life you would like to lead.
>
>
> - Scott
Posted by Jeroen on June 20, 2013, at 3:23:02
In reply to Re: Beat it » SLS, posted by bleauberry on June 19, 2013, at 14:46:18
thanks for explaining friend i missed you
panotile doesnt work anymore i was almost cured
Posted by highhatsize on July 7, 2013, at 12:08:30
In reply to Re: Beat it » SLS, posted by bleauberry on June 19, 2013, at 14:46:18
My commiserations for those in this thread continuing to suffer. I'm posting because I have been feeling remarkably good for several years (!!) and I wanted to alert folks to what I think MIGHT be the cause. (Of course, it could also be circumstantial.)
First of all, my bona fides, I am 66 and on SSI for Major Depressive Disorder, a lifelong condition. I've been on all the usual drugs at some time or other and some of them worked, specifically Paxil and, later, Lexapro. albeit imperfectly. However, I date my recent condition of emotional equanimity to my beginning to take injections of testosterone at a dosage of 200 ml./2 weeks. I have been stable so long since that initiative that I have actually begun to believe that THIS must be the way that normal people feel and have begun to examine past behavior from a point of view that I believe might actually be that of someone not-mentally-impaired. That's a first.
Of course, my status might as well be the result of a change in environment (from living under the same roof with a psychopath) or simply age killing off some pernicious brain cells but it MIGHT be the testosterone, that being the only other variable.
The fact is that besides the testosterone, I am taking NO psychoactive meds at the present. I had been on 10 mg./day of Lexapro and titrated that down to 2.5/mg., which I suspect is sub-clinical, and which I took for the past few years just because I was afraid to be without any SSRI at all. Recently, I discontinued that as well and have suffered no ill-effects. (I will let you all know if I do.)
Please do NOT make any changes in your medication regimen without talking it over with your shrink. My result may be completely idiosyncratic. But I have never in my life felt this good for this long.
This is the end of the thread.
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