![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by sregan on July 1, 2010, at 10:04:32
Can anyone recommend an AD for me to try?
I have had Chronic fatigue for 7 years. Brain chemistry has been all over the place.
What I have tried:
1. Prozac (absolute worst week of my life bar none)
2. Paxil (2 days, not much different than prozac)
3. Bupropion (some effect, day 3 or 4 was wonderful, felt calm, peaceful, then downhill from there)
4. Wellbutrin 150 x 2 helped intially but after a while felt aggressive, slightly paranoid and wanted sex too much (Dr. wanted me to try 300's was not willing).
5. Imipramine (Took for a week. Day 3 was terrific, felt happy, outgoing, a little charged). Downhill from there. Not in a position to try longer.I'm always in a type of slightly anxious state. I have taken Klonopin 1/2 of .5 for a long time to help with that and help sleep. I'm in the US by the way so restricted to what's available here.
Posted by SLS on July 1, 2010, at 10:37:38
In reply to Need AD recommendation, posted by sregan on July 1, 2010, at 10:04:32
Do you suffer from depression along with CFS?
I understand that nortriptyline and phenelzine have been tested for treating CFS with some success. Phenelzine might end up helping with the anxiety.
How has Effexor fared as a treatment? I know Cymbalta is being looked at. I guess it is possible that you would have a negative reaction to any drug that potently inhibits the reuptake of serotonin. For this reason, you might want to try nortriptyline or an MAOI first.
It might be counterproductive to attempt to judge the utility of a drug so early in a trial. It can take weeks or months to respond. Of course, it probably doesn't make sense to stay on a drug that you react negatively to.
- Scott
Posted by Phillipa on July 1, 2010, at 12:08:40
In reply to Re: Need AD recommendation, posted by SLS on July 1, 2010, at 10:37:38
Just to be sure your doc has checked you thyroid as it's also a cause of chronic fatique. Phillipa
Posted by bleauberry on July 1, 2010, at 15:55:49
In reply to Need AD recommendation, posted by sregan on July 1, 2010, at 10:04:32
I don't know how much studying on the web you have done on the topic of CFS. But if you've dug into then you know the top theories on its cause are infection related...a virus, Lyme disease, and such. Usually bacterial. The fungal form of Candida is also a big one.
Long story short, the miracle stories out there of people who recovered from CFS are mostly ones that treated the disease as an infection with antibiotics. Think about it, Lyme as example, has three forms of the bacteria. One of them penetrates our own cells and lives inside, totally hidden from our immune systems and lab tests, and able to do catastrophic damage to our biology. No wonder the chronic fatigue and mood problems.
Just throwing that out there in case it is something you haven't heard before. With CFS I think it is prudent to not rule anything out, to leave no stone unturned, and to look at what it is that actually gets people better instead of merely trying to improve the symptoms.
That said, there is one drug I know of that in my opinion has the best shot of helping you. That is low dose Naltrexone, commonly called LDN. For its intended use the dose is 50mg. But for LDN, the dose is only 1.5mg to 4.5mg nightly. Since its discovery there are now reports that some people take even less, take it once every 2 days, or take it during the day instead of night. Self experimentation is needed.
The two most common things to improve in CFS and MS and Lupus with LDN are energy and brain fog.
LDN tricks the body into making more endorphins, which are directly linked to the immune system. The killing ability of the immune system is dramatically increased, even fighting cancer, while the autoimmune sensitivities are decreased.
It is seldom a miracle pill that cures the entire spectrum of symptoms, but is a maust-have to many who share your patient profile looks like yours.
LDN has to be made in a compounding pharmacy to get such low doses. At such a tiny dose the risks and side effects are practically nill, so no doctor has any right to say no to it even if they've never heard of it.
Do a google search on LDN and read all you can about it. Print that stuff out and bring it to your doctor.
You know the bizarre reactions to your psych meds? Well, that happens to fit the profile very well for chronic infections and a confused or compromised immune system. Many would say you are just "sensitive", or it is just "side effects". I disagree. Those bizarre reactions are painting a picture and trying to tell you something. There are clues there if one knows what to look for. Sadly most people don't see the clues even when those clues are screaming at them. Most doctors, outside of Lyme specialists, don't see them either. They instead put a name to some mystery condition and attempt to treat it as if it was a disease, when it isn't, it is a constellation of symptoms from something else that is in fact the real disease.
Hope this helps.
Other than LDN, a look at Ritalin and Modafinil makes sense. Very careful though. Easy does it on the dosing. What many people with these mystery diseases discover is that they need much lower doses than the normal population. 1/8th of the starting dose, 1/4, and such, very common. The worse thing to do is to take the commonly prescribed doses.
Longer term, what to do about it all? Well, LDN is a solid base to work from. From there it involves experimentation with one of the tetracycline antibiotics and the antifungal diflucan. Herbs are safer ways to do the same kind of probing. Good ones include grapefruit seed extract, olive leaf, cat's claw, japanese knotwood, coptis root, pau d'arco tea, oil of oregano, teasel root, and others. St Johns Wort is very potent on viruses. Use it in tincture form though because with your sensitivities you would want to start with mere drops. These things will give you a bunch of clues and one of them may hit the nail right on the head.
Best first move....LDN.
Posted by bleauberry on July 1, 2010, at 16:21:08
In reply to Need AD recommendation, posted by sregan on July 1, 2010, at 10:04:32
Forgot to mention. It is common for people taking ldn to experience a boost in mood along with the increased energy and lessened brain fog. I did. Except for the first 4 hours of the day, my depression was much improved, sociability greatly improved, and anxiety gone. For those that don't, something that has worked is either a tiny dose of an antidepressant...much smaller than the ones you took...or the supplement DLPA,,,25mg to 100mg. Internet doses and suggested doses on the bottle are much higher...ignore those. You'll have to buy some empty gelcaps and make your own doses. If that is a new thing to you, it is a good art to learn. Not hard. Not exact, but doesn't matter. Close enough is fine.
What if someone told you hard to treat depression patients were made well on 1 drop of lexapro. That is preposterous. 1 drop is 1/10th of a milligram. Ridiculous. Well, fact is, it happens in my doctor's office. He usually has to increase to 10 drops or more taken multiple times throughout the day, but the total dose is far below any normal dose. That said, those same patients were taking antibiotics to get to the suspected disease. I say suspected because there is no proof. Do not expect proof. Do not expect any lab test to tell you what is wrong. It won't. You have to go on symptom profile. CFS fits, even more so with depression and difficulty handling antidepressants.
DLPA makes sense based on what happened with wellbutrin and TCA. Not his fault, but your doctor just doesn't know what he is dealing with, and thus the error in dosing too high.
I guess in summary I'm trying to say that while you continue efforts to minimize your actual symptoms, the primary focus should be on the assumption there is an identifiable cause of the whole mess. It takes various blind trials to present clues. Practically everyone who overcame their mystery disease did exactly that, after being failed by multiple specialists and a trunk full of prescriptions.
My Lyme specialist doctor actually stumbled onto being a Lyme expert when he, as a CFS doctor, discovered that a great number of his patients were getting better when they took antibiotics for other unrelated conditions. Two and two started to add up and make sense.
I could be totally off base here. But the realworld evidence of everything I have said is strong enough to take a serious look. There is nothing to lose in any of it, and everything to gain. No potential downside. All the unseen potential is on the upside.
Posted by sregan on July 1, 2010, at 17:18:28
In reply to Re: Need AD recommendation, posted by SLS on July 1, 2010, at 10:37:38
Scott, I forgot I tried Effexor also, not good. Anything messing with Serotonin (not sure which subtypes) has lit me up like a firework.
Scott>It might be counterproductive to attempt to judge the utility of a drug so early in a trial.
Yeah, the imipramine might have helped. I have to remain functional. I've read that when you get an early positive it's a good sign. I might attempt again or with something similar.
Phillipa>Just to be sure your doc has checked you thyroid as it's also a cause of chronic fatique
Phillipa, been there done that. Also tried many thyroid supps, most recently high dose iodine...everything ends up raising my herx level.
bleauberry - I've been through the CFS gamut and waiting for something to work (Candida, mercury, lyme, thyroid, adrenal, etc.) I just started the SCD diet in desparation. Raised my herx level but I'm hopeful. I've had plenty of GI issues and would not surprise me if this is the source of my problem.
Thanks for the info on Naltrexone. Sounds like it's work a try. Can I just get regular dosage pills and crush them? Usually depends on how standardized the tablets are.
I've tried DLPA and the supplement route. Some things help and others not. Nothing helps regularly unfortunately.
If you don't already know about this site have a look. It's probably the best lyme treatment site I've seen: http://lymemd.blogspot.com/2009/10/thoughts-on-psych-drugs-for-lyme.html. He mentions Ritalin is his fav.
I was on Doxy and Zith for a couple months. My liver had enough. Didn't graduate to the Tinazadole.
Posted by sregan on July 16, 2010, at 11:07:27
In reply to Re: LDN and more, posted by bleauberry on July 1, 2010, at 16:21:08
Bleauberry,
I have taken your advice and started Naltrexone last night. I was lucky to have a compounding pharmacy that could fulfill the Rx within walking distance of my job. Took about 10pm last night, slept pretty good, up at 3am and light sleep after. No problem getting up in the morning 7am. I'll keep you posted on my progress.
> Forgot to mention. It is common for people taking ldn to experience a boost in mood along with the increased energy and lessened brain fog. I did. Except for the first 4 hours of the...
Posted by sregan on July 27, 2010, at 9:51:28
In reply to Re: LDN and more, posted by bleauberry on July 1, 2010, at 16:21:08
Bleauberry,
The LDN isn't my savior. I think it did help me in some way but totally drained my Adrenals fast. Someone mentioned that some people need to address Candida issues before taking it? I"m wondering if once a week might be in order? I took 3-4 days in a row of 4.5 mg then had to stop....2 days later took 1.5mg and still was wiped out the next day from that.
I'm curious about the Lexapro you mention in your post. Is there any more information about the low dose Lexapro?
> Forgot to mention. It is common for people taking ldn to experience a boost in mood along with the increased energy and lessened brain fog. I did. Except for the first 4 hours of the day, my depression was much improved, sociability greatly improved, and anxiety gone. For those that don't, something that has worked is either a tiny dose of an antidepressant...much smaller than the ones you took...or the supplement DLPA,,,25mg to 100mg. Internet doses and suggested doses on the bottle are much higher...ignore those. You'll have to buy some empty gelcaps and make your own doses. If that is a new thing to you, it is a good art to learn. Not hard. Not exact, but doesn't matter. Close enough is fine.
>
> What if someone told you hard to treat depression patients were made well on 1 drop of lexapro. That is preposterous. 1 drop is 1/10th of a milligram. Ridiculous. Well, fact is, it happens in my doctor's office. He usually has to increase to 10 drops or more taken multiple times throughout the day, but the total dose is far below any normal dose. That said, those same patients were taking antibiotics to get to the suspected disease. I say suspected because there is no proof. Do not expect proof. Do not expect any lab test to tell you what is wrong. It won't. You have to go on symptom profile. CFS fits, even more so with depression and difficulty handling antidepressants.
>
> DLPA makes sense based on what happened with wellbutrin and TCA. Not his fault, but your doctor just doesn't know what he is dealing with, and thus the error in dosing too high.
>
> I guess in summary I'm trying to say that while you continue efforts to minimize your actual symptoms, the primary focus should be on the assumption there is an identifiable cause of the whole mess. It takes various blind trials to present clues. Practically everyone who overcame their mystery disease did exactly that, after being failed by multiple specialists and a trunk full of prescriptions.
>
> My Lyme specialist doctor actually stumbled onto being a Lyme expert when he, as a CFS doctor, discovered that a great number of his patients were getting better when they took antibiotics for other unrelated conditions. Two and two started to add up and make sense.
>
> I could be totally off base here. But the realworld evidence of everything I have said is strong enough to take a serious look. There is nothing to lose in any of it, and everything to gain. No potential downside. All the unseen potential is on the upside.
This is the end of the thread.
Psycho-Babble Medication | Extras | FAQ
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.org
Script revised: February 4, 2008
URL: http://www.dr-bob.org/cgi-bin/pb/mget.pl
Copyright 2006-17 Robert Hsiung.
Owned and operated by Dr. Bob LLC and not the University of Chicago.