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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 26. This is the beginning of the thread.
Posted by Dla on May 26, 2018, at 14:56:08
Hi folks, I would love to get yours thoughts on this.
I am in my 40s and have been on Nardil 20+ years. I am wondering if these issues are from Nardil or possibly some other disease?
They seem to be getting worse. Researching these symptoms points to all sorts of possible causes: anemia, diabetes etc. I'm at a loss at who to see or what to do next.
1. Muscle and Cardio weakness
Quick lactic acid buildup in muscles and easily winded when even doing simple things, ex: walking up a few flights of stairs. BP is normal.2. Extreme tiredness
For several hours, almost every day. Takes huge effort to stay awake, often must nap.
3. Heat intolerance and excessive sweating.4. Painful aching and numbness in both arms and elbows. This is a recent issue.
What I've done:
-Told my GP.
He had me tested for Lyme (negative). And thyroid (was hypothyroid and take a little levothryn now)-Told my psydoc.
Tested blood B6 levels (normal) .
Tried various meds to counteract these issues, with no effect.
Posted by linkadge on May 26, 2018, at 17:01:38
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
Nardil can cause insomnia and daytime fatigue, but these side effects would likely plateau in the first few years of using it.
Have the symptoms got worse recently, or has it been progressively creeping up over the 20 years?
How are your sleeping patterns? MAOIs can disrupt sleep which (over time) might contribute to some of the problems mentioned.
How long ago did you start levothryn?
It could be diabetes / prediabetes. It wouldn't hurt to get your blood glucose / A1C checked.
Do you eat a quality diet? If not, it could be other nutrient deficiencies (b12, d, mgnesium etc).
For symptom relief, co-q10 might help some.
Linkadge
Posted by linkadge on May 26, 2018, at 17:02:39
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
Just do add, would you say your symptoms are mostly physical, or is there any worsening of psychological problems (i.e. hopelessness / anxiety). Have you tried parnate?
Linkadge
Posted by Dla on May 26, 2018, at 19:10:14
In reply to Re: Nardil causing this or something else?, posted by linkadge on May 26, 2018, at 17:01:38
Thanks for your reply.
> Have the symptoms got worse recently, or has it been progressively creeping up over the 20 years?
Consistent since the start, but my perception is they are getting somewhat worse over time.
> How are your sleeping patterns? MAOIs can disrupt sleep which (over time) might contribute to some of the problems mentioned.
Not good. Can only stay asleep 5-6 hours a night. Tried everything over the years, currently Ambien CR works best.
> How long ago did you start levothryn?
5+ years. Tested 1x year and TSH was in normal range last time.
> It could be diabetes / prediabetes. It wouldn't hurt to get your blood glucose / A1C checked.My blood glucose is high but in normal range. Would that catch diabetes?
BUN and Bun/creatinine ratio were out of normal, but only slightly and my doc was unconcerned.
> Do you eat a quality diet? If not, it could be other nutrient deficiencies (b12, d, mgnesium etc).
No. Unstoppable Nardil carb/sweet cravings contribute greatly to this.
B6 and B12 are in slightly lower end of normal range. Not tested for magnesium.
> For symptom relief, co-q10 might help some.
How?
What other tests do you recommend? I feel like I am missing something that may unlock things. Thanks.
Posted by linkadge on May 27, 2018, at 7:11:01
In reply to Re: Nardil causing this or something else?, posted by Dla on May 26, 2018, at 19:10:14
It sounds like the nardil itself might be contributing to some of the problems. Both of these meds are not great for sleep architecture.
5-6 hours of Ambien assisted sleep is not enough to really restore. Especially if this is extended over long periods of time. Lack of deep sleep coupled with poor diet could easily lead to many of the symptoms mentioned. Of course, it could be something else.
I assume you've tried other meds for depression?
If you lower the Nardil, would the sleep improve (assuming you keep the Ambien in place)?
Co-q10 is an antioxidant that can provide energy to cells. Sometimes q10 and NADH are used alone or in combination for conditions of low energy / CFS. Sublingual b12 might also help.
Linkadge
Posted by Lamdage22 on May 27, 2018, at 10:33:50
In reply to Re: Nardil causing this or something else? » Dla, posted by linkadge on May 27, 2018, at 7:11:01
For the cravings you could try Metformin. Youd need to test your kidneys regularly if you do though.
Posted by Dla on May 27, 2018, at 15:26:12
In reply to Re: Nardil causing this or something else?, posted by Lamdage22 on May 27, 2018, at 10:33:50
> For the cravings you could try Metformin.
Yup, I've tried it. No effect. :/
Posted by Dla on May 27, 2018, at 15:48:27
In reply to Re: Nardil causing this or something else? » Dla, posted by linkadge on May 27, 2018, at 7:11:01
> It sounds like the nardil itself
> 5-6 hours of Ambien assisted sleep is not enough to really restore.What are suggestions for "healthy" and longer sleep with Nardil?
I've been on lots of meds for insomnia, Trazodone pooped out on me.
Posted by PeterMartin on May 27, 2018, at 16:11:31
In reply to Re: Nardil causing this or something else?, posted by Dla on May 27, 2018, at 15:48:27
Out of curiosity which brand generic of Nardil are you currently taking? Are you on the newer (~2011+) Gavis-Lupin brand or the Pfizer Greenstone brand?
I just started Nardil in Jan and have a lot of those sides. I've always taken the Gavis/Lupin(Lupin bought Gavis recently). Obviously before Gavis was available you took the Pfizer/Greenstone version.
I haven't had a great response after 4 months. Only been on 90 for ~3weeks but it's been very inconsistent.
Posted by Dla on May 27, 2018, at 17:09:10
In reply to Re: Nardil causing this or something else?, posted by PeterMartin on May 27, 2018, at 16:11:31
> Out of curiosity which brand generic of Nardil are you currently taking? Are you on the newer (~2011+) Gavis-Lupin brand or the Pfizer Greenstone brand?
I think I've been on both and never noticed a difference. You might just need more time to settle in. Some side effects went away over time for me.Others not so much.
Posted by PeterMartin on May 27, 2018, at 18:17:03
In reply to Re: Nardil causing this or something else?, posted by Dla on May 27, 2018, at 17:09:10
Yea I hope so.
Which type are you using right at this moment?
Posted by Lamdage22 on May 28, 2018, at 4:32:36
In reply to Re: Nardil causing this or something else?, posted by Dla on May 27, 2018, at 15:26:12
> > For the cravings you could try Metformin.
>
>
> Yup, I've tried it. No effect. :/Hmm that seems to happen to some people
Posted by Dla on May 28, 2018, at 8:17:15
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
Lambdage22, does Metformin work for you?
You use Trazodone or Seroquel for sleep? Trazodone stopped working for me even when I raised the dose. It just dried me out more. Seroquel weight gain and other side affects worry me.
Posted by Lamdage22 on May 28, 2018, at 10:55:11
In reply to Re: Nardil causing this or something else?, posted by Dla on May 28, 2018, at 8:17:15
> Lambdage22, does Metformin work for you?
>
> You use Trazodone or Seroquel for sleep? Trazodone stopped working for me even when I raised the dose. It just dried me out more. Seroquel weight gain and other side affects worry me.Yes Metformin works. I dont get sleepy from Trazodone. I take it as an AD and for me its better than many other ADs. Go figure.
Posted by Dla on May 28, 2018, at 11:28:32
In reply to Re: Nardil causing this or something else?, posted by Lamdage22 on May 28, 2018, at 10:55:11
Metformin works for what? Weight loss?
What do you recommend for sleep? Thanks.
Posted by ed_uk2010 on May 28, 2018, at 13:12:33
In reply to Re: Nardil causing this or something else?, posted by Dla on May 28, 2018, at 11:28:32
How long is it since you tried trazodone? If it's a long time ago, you may have lost your tolerance to it.
Posted by PeterMartin on May 28, 2018, at 15:50:15
In reply to Re: Nardil causing this or something else? » Dla, posted by ed_uk2010 on May 28, 2018, at 13:12:33
I'm on Nardil as mentioned and take a crumb (25mg) of Seroquel every night to sleep. Have taken it since 2007. At the small of a dose it never fails to put me to sleep but there is no weight gain problem. Also no tolerance or addiction.
Would definitely recommend Seroquel at 12.5 to 50 to get to sleep. If doc prescribes 100 just cut them. Takesvery little.
Posted by PeterMartin on May 28, 2018, at 15:58:16
In reply to Re: Nardil causing this or something else?, posted by PeterMartin on May 28, 2018, at 15:50:15
I'm taking metformin along with Nardil to try to prevent weight gain as well btw. I think it's helped but it can take months to really know (titrated up on both and it's 4 months now)
Finally at 2000 metformin and 90 Nardil. Believe it or not metformin is a drug that has different performing generic brands(google it). I've tried a bunch and have settled on the ER Sun brand. Up about 4lbs in 4kbs but I'm still having bad urinary retention. My appetite hasn't been out of control (sweets) so I'm hopefully once I settle in on the max dosages ill stop gaining even slowly.
May go back to provigil as well to further try to curb my appetite. I was on Marplan doe 7yrs before and provigil kinda zoned me out w a bit of OCD. I tried a lite yesterday and I think it helped my mood, lowered my appetite, and didn't get me quite as hung up on things as it did on Marplan....
My last resort for weight gain will prob be Zongran. It's an antiseizure med similar to topamax (which worked for me last year but had really bad cognitive sides). My dear with zonegram is mood disturbances. It can help depression, make it worse, or my biggest fear cause a switch to mania. (From reviewing pub med studies). I still think I'd try a low doseif my weight gets out of control.
Posted by Lamdage22 on May 29, 2018, at 13:09:03
In reply to Re: Nardil causing this or something else?, posted by Dla on May 28, 2018, at 11:28:32
> Metformin works for what? Weight loss?
Exactly. No guarantee you will benefit but it is worth to try. It is the cleanest drug i have ever taken.
> What do you recommend for sleep? Thanks.
I like Seroquel for that. Can Seroquel be combined with MAOI? Somebody knowledgeable hopefully chimes in.
Posted by Lamdage22 on May 29, 2018, at 13:10:27
In reply to Re: Nardil causing this or something else? » Dla, posted by ed_uk2010 on May 28, 2018, at 13:12:33
Hi ed, sorry if i didnt make myself clear. I take it right now. 75mg
> How long is it since you tried trazodone? If it's a long time ago, you may have lost your tolerance to it.
>
>
Posted by Dla on May 31, 2018, at 19:09:35
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
Anyone have luck stopping sweating on Nardil?
My summers are miserable.
Posted by bleauberry on June 3, 2018, at 17:36:55
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
Well it looks really obvious to me. But being a 20 year hard-knocks expert on Lyme, I am biased. Maybe I have lymephobia. Kidding. Seriously, your symptoms are textbook Lyme.
You do know that the lab tests are 50/50 accuracy, right?
Let me to tell you a quick story. Same thing happened to me. Months later I fell into deep depression for no reason, really tired, not achy but stiff, just generally unwell. Diagnosed as depression, bipolar 1, bipolar2, schizoaffective, whatever, 12 different psychiatrists, $120,000 total, failed ECT, meds not sufficient, attempted suicides, a Nurse Practitioner says maybe it's Lyme, I see a Lyme expert (LLMD) and 3 years later I am in remission my symptoms are all gone. The treatment was 3 to 4 antibiotics at the same time for many months, rotating them around, and there are books on why this is necessary.
So when you have obvious symptoms of Lyme disease and a doctor looks at you and says, "I am happy to inform you your lab is negative and it appears you don't have Lyme"....you have to realize that is the equivalent of a Judge sentencing an innocent person to a life in a dungeon with ever-increasing torture and premature death.
I would suggest you go online and start searching for LLMD's in your area. Your regular doctor is not trained on this stuff. Obviously, in this case. Embarrassingly obvious. That's almost malpractice obvious, if you ask me. But it isn't. It's routine. It is the reason I was misdiagnosed and suffered so terribly for 20 years. That's a third of my life - gone - because of one doctor's misdiagnosis.
How you do know if it's Lyme? Well, first of all, you do not rely on tests. If you want the most accurate test - maybe around 80% - you want the Western Blot from IGenex Labs. That's the most specialized there is. It's around $800 and insurance probably won't cover it. And it could still be wrong.
The only way to know for sure is through clinical diagnosis by someone who specializes in it. LLMD is Lyme Literate M.D. Every state has a few. They are specially educated. Family doctors and infection specialists are not. Well, they are, but not in ways that result in frequent success. LLMDs have a lot of success.
A common telltale sign is this: 1.You start an antibiotic for Lyme or several herbs for Lyme. 2. You keep a diary of each 4 hours of your day for the next 5 days. 3.You look for a pattern - the first thing to happen is you feel a little better to miraculously better in a very short time, maybe 1 day to 3 days - then you crash harder than you started - which is called a Herxheimer reaction - and is also the most reliable indicator of hidden Lyme that I know of. Both of the LLMDs that saved my life used that tactic to confirm their own suspicions.
If you think about it, compare the list of things your doctor wants to do, how much it will all cost, how much time, inconvenience, all that, compare that to the effort it takes to swallow a pill or two of an antibiotic for a couple weeks to see what happens? I mean, to me, it's a no brainer, because I have lived this thing. But to others who haven't, it is normal to seem shocking and overwhelming at first glance.
I hope this helps in some way. I really hope your journey stays on the right road. There are several roads to try but only one of them gets to where you want to go. I'm just sharing with you what road I think that is.
Posted by atypical on June 4, 2018, at 7:02:09
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
I am in my 40s also and have been taking Nardil, but for for 10 years. I have similar issues with all of the things you mentioned except #3. I am very athletic and run, bike, play tennis, but sometimes I get winded easily -- especially when running, so I don't do more than 30 minutes at a time and maybe 2-3 times a week. My knees feel sore when I run, which is a recent phenomenon. In the summertime and in poor air circulation I sweat easily, so I wear a wristband.
Have you tried a very slight reduction in dose? Meaning cutting a tablet into 4ths and taking, say 3 and 3/4 tablet instead of 4 (if you are taking 60 mg). I take something like 53 mg.
> Hi folks, I would love to get yours thoughts on this.
>
> I am in my 40s and have been on Nardil 20+ years. I am wondering if these issues are from Nardil or possibly some other disease?
>
> They seem to be getting worse. Researching these symptoms points to all sorts of possible causes: anemia, diabetes etc. I'm at a loss at who to see or what to do next.
>
> 1. Muscle and Cardio weakness
> Quick lactic acid buildup in muscles and easily winded when even doing simple things, ex: walking up a few flights of stairs. BP is normal.
>
> 2. Extreme tiredness
> For several hours, almost every day. Takes huge effort to stay awake, often must nap.
>
> 3. Heat intolerance and excessive sweating.
>
> 4. Painful aching and numbness in both arms and elbows. This is a recent issue.
>
> What I've done:
> -Told my GP.
> He had me tested for Lyme (negative). And thyroid (was hypothyroid and take a little levothryn now)
>
> -Told my psydoc.
> Tested blood B6 levels (normal) .
> Tried various meds to counteract these issues, with no effect.
>
>
Posted by Dla on June 4, 2018, at 22:08:40
In reply to Re: Nardil causing this or something else?, posted by atypical on June 4, 2018, at 7:02:09
atypical, I've tried lowering dose many times but even in slow steps of 1/8 pill I go downhill quickly.
I may give Metformin another for weight gain/cravings, given the feedback in this thread.
I haven't heard of anything working for sweating, unfortunately.
Posted by pedr on June 18, 2018, at 22:29:47
In reply to Nardil causing this or something else?, posted by Dla on May 26, 2018, at 14:56:08
>> 1. Muscle and Cardio weakness
Quick lactic acid buildup in muscles and easily winded when even doing simple things, ex: walking up a few flights of stairs. BP is normal.100%. I'm exhausted after 1-2 flights and my leg muscles are burning in an unusual way.
Pete
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