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Dr. Bob is Robert Hsiung, MD,
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Posted by qbsbrown on April 1, 2010, at 21:33:47
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by Phillipa on April 1, 2010, at 20:16:41
> Brian how did they diagnose you? Presenting symptoms? Phillipa
Went in with symptoms, Spinal tap was positive, and lesions in mri (although i had a second opinion on my mri, and he didn't thin the white matter was indicitive enough for MS, but still had the spinal tap results). But yes, i went in, telling them i was dying, i couldn't speak, pressured speech/slurred, i couldn't type simple words, blurred vision etc.
My benzo wd symptoms were outrageous, and i now wonder how much of it was MS. Electrical shocks, muscle deteriorations, diffficulty swallowing, tremors. So what was MS, and what was benzo wd? HHHMM dunno.
Brian
Posted by Phillipa on April 1, 2010, at 21:36:36
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 21:33:47
Brian I was also given an MRI and two spinal taps with chronic lymes disease didn't know they were also looking for MS till the neurologist told me. I wonder what google searches we could find on this? Phillipa
Posted by qbsbrown on April 1, 2010, at 21:59:44
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by Phillipa on April 1, 2010, at 21:36:36
> Brian I was also given an MRI and two spinal taps with chronic lymes disease didn't know they were also looking for MS till the neurologist told me. I wonder what google searches we could find on this? Phillipa
Did it come up negative for MS?
I have read that tons of benzo wd symptoms mimic MS, and some have been fasely diagnosed. But the neurologist said that the new spinal tap testing that they have is about 97 percent accurate. He also said there were 2-3 lesions in the brain, also my second opinion didn't think it constituted MS lesions. who knows. I'll just keep injecting myself everyday:)
Posted by morganator on April 1, 2010, at 22:34:29
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 12:13:50
I've thought about MS. Had an MRI a year and a half ago but the neurologist didn't see anything. I also keep asking my primary care physician if she thinks it is possible that I have some autoimmune disorder and she doesn't think so. I think I'm going to see her and demand that every measure is taken to ensure that nothing like MS is going on with me.
Geeze sorry to hear about your diagnosis. What type of MS have you been diagnosed with?
Posted by morganator on April 1, 2010, at 22:41:46
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 21:59:44
If I do have MS, it is VERY mild and progressing slowly. I hope I don't but that would explain the periods of feeling absolutely horrible. I think what is going on with me is that I have soooo many injuries and have been under tons of stress and I've been through medication trial hell for the last two years. I just don't think my brain is producing the chemicals I need to feel normal consistently. I totally regret having three elective surgeries and being put under general anesthesia in a fairly short period of time. I wouldn't be surprised if my brain was damaged from the general anesthesia. I know my body is damaged from the surgeries.
Posted by qbsbrown on April 1, 2010, at 22:43:57
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 1, 2010, at 22:34:29
Demand a spinal tap!!!! I did, that's where it came back positive.
Brian
Posted by qbsbrown on April 1, 2010, at 22:45:38
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 1, 2010, at 22:34:29
And keep in mind, if you did in fact have any MS lesions, they could be in your spine, they don't have to be in the brain.
Brian
Posted by qbsbrown on April 1, 2010, at 22:55:42
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 1, 2010, at 22:41:46
> If I do have MS, it is VERY mild and progressing slowly. I hope I don't but that would explain the periods of feeling absolutely horrible. I think what is going on with me is that I have soooo many injuries and have been under tons of stress and I've been through medication trial hell for the last two years. I just don't think my brain is producing the chemicals I need to feel normal consistently. I totally regret having three elective surgeries and being put under general anesthesia in a fairly short period of time. I wouldn't be surprised if my brain was damaged from the general anesthesia. I know my body is damaged from the surgeries.
If you don't mind me asking, what were the elective surgeries for?
I recently had 6 ECT sessions, for which yes, they do put you under for a few minutes, but I don't regret that, or think that it did any comproble damage than what swallowing tons of psychiatric medications over the past few years have done to me.
Brian
Posted by morganator on April 1, 2010, at 23:50:19
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 22:55:42
Hey Brian,
I had some knee and hip issues and had a bilateral knee scope and two separate hip scopes. I also had my carpal tunnel released. I regret having most of these done for several reasons.
Thanks for the spinal tap suggestion, I think I will do that.
Morgan
Posted by morganator on April 1, 2010, at 23:51:16
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 22:55:42
Brian, How did ECT work out for you and why did you have it?
Posted by morganator on April 2, 2010, at 14:05:35
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 22:55:42
Brian, I don't have any issues with muscle loss-weakness, rigidity, soreness, but no muscle loss. Does this eliminate the possibility of MS?
One thing that is most disturbing is when I try to contract my muscles sometimes, especially in my legs, and they simply do not respond in a healthy normal way. It often keeps me from wanting to go to the gym, which had been something I did religiously for years.
Posted by morganator on April 2, 2010, at 17:29:03
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by morganator on April 2, 2010, at 14:05:35
I also feel numbing and tingling sensations throughout my face. Is this a common symptom of MS?
Posted by bleauberry on April 2, 2010, at 18:37:35
In reply to Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on March 29, 2010, at 22:48:10
Well, I can't help much but did want to take a minute to shed some light on the lyme western blot approach.
Most chronic lyme sufferers had symptoms are stories similar to yours, the negative test results were common.
There is much to learn about lyme. Much we don't know. The western blot was NEVER intended for diagnosis. It was intended for general surveillance of regional outbreaks. Some error in there won't hide an outbreak. The test has flaws and is not perfect. The organism is deceptive and smart at hiding from both tests and your own immune system.
There is only one lab in the USA that specializes in accurate testing western blot lyme. You probably did not use that lab.
Most people were diagnosed, despite all the negative tests and years of needless suffering, on clinical examination, not labs...the symptoms were consistent with lyme and there was history of tick exposure. Many of them do not recall ever being bitten by a tick and never had the famous rash.
They had a couple things in common. They had viscious Herx reactions to antibiotics. They got better after the Herxs passed. It was indeed Borellia (Lyme).
The co-conspirators of lyme are just as bad, and hardly ever considered. Bartonella, Babesia, and a couple others. They are worse than the primary Borellia suspect, but not looked for in the common western blot usually.
Even plain jane Candida is horrid. Causes every psych and physical symptom you can think of. No way to test for it. As with lyme, the only definitive test is to blindly try an anti-fungal protocol and see what happens. The reaction is the diagnosis. Most docs don't accept yeast/fungus as an issue, unless there is an obvious diaper rash, vaginal infection, or thrush tongue. I see that as arrogant human negligence, humans routinely assuming they know more than they do. If you get a Herx on Diflucan, you got yeast in your system, plain and simple, and it is definitely impacting your nervous system with toxins as powerful as manmade.
With lyme, same thing. The true definitive test is a sampling of a few select antibiotics to see what happens. The reaction, or pattern of reaction, tells a story that no lab report can.
I have no idea what your symptoms come from. No clue if it is lyme or any other hidden thing. I just wanted to expand on your comments on the western blot, because within your comments are the identical falsehoods shared in the histories of those who have recovered from lyme that tested negative.
I am not trained to do physical examination. Lyme symptoms can affect any part of the body and basically can imitate any disease. Thus its nickname "The Great Imitator". But there are some general trends seen. Your symptoms fit those trends. The way it affects your muscles and psychiatry and other weird things, all common stories of lyme.
Even people definitively diagnosed with MS have been cured with anti-lyme treatments, and seen their supposed MS brain lesions clear up in the process.
I'm not going any particular direction with this discussion, just trying to point out that there is a lot more here to be aware of.
On a more comforting side, the drugs used to help minimize the symptoms of lyme are the very same drugs used in psychiatry. They won't cure anything, but the right ones can at least make life more functionable and slow down the progress of the symptoms.
So for symptom control, the psych toolbox is the right place to look. To end the symptoms probably requires things outside of the psychiatry toolbox.
Until you have tried Doxycyline, Flagyl, Diflucan, and Wormwood, you really have no clue if you have lyme or candida or babesia or bartonella or all of them. The above substances cover them all well enough to tell a story whether a hunch is correct or not. The symptoms you have indicate a good reason to at least have a hunch. But the absolute worst thing you can do is rely on a lab test to make a definitive decision. That is the one single greatest thing most likely to prevent you from making headway.
> I am so sick of dealing with this. I've been tested for lyme 3 time using western blot. I've been tested for rheumatoid arthritis. Both tests came back negative. I've had a physical a few times in the last few years, everything checks out o.k.
>
> I'm bipolar and I'm on these medications:
>
> Lithium 300mg
> Depakote 500mg
> Fluoxetine 80mg
> Zyprexa 2.5mg-weening off
>
> I have been experiencing high anxiety, fatigue, brain fog, muscle weakness and stiffness, and depression.
>
> Does anyone have any suggestions as to what I might be able to do as far as medications go to improve the way I feel? Obviously the days of taking 100mg Zoloft and a few grams of fish oil and feeling good are over.
Posted by morganator on April 2, 2010, at 18:58:45
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 2, 2010, at 18:37:35
Thanks for the informative response Bleauberry.
Is it possible to have some good times when you feel pretty good even when you have a Candida or Lyme issue? I just have so many injuries and such bad anxiety and have been on so many medications, it really is hard to tell what is going on here. I think I need to go see my primary care physician and have a conversation with her. She really is a very good doctor and came highly recommended. She is very smart and thorough. But I realize that even the smartest of doctors can overlook and miss things.
I did have a Lyme test where my doctor sent it away to a specific lab, I wonder if it was the same lab you are speaking of.
So, even if I had a negative result after having my blood sent to the lab that you speak of, it is possible that I may still have Lyme?
Is there a specific way of testing for Candida?
Posted by morganator on April 2, 2010, at 20:09:49
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 2, 2010, at 18:37:35
Can you have Lyme for a long time without suffering from any noticeable symptoms? Could a period of trauma/stress awaken previously dormant disease like Lyme? Is this possible.
Posted by Phillipa on April 2, 2010, at 20:23:31
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » bleauberry, posted by morganator on April 2, 2010, at 20:09:49
Yes as that is what happened to me. Spinal taps negative for even old lymes and MS also MRI no evidence of either. But IGG remains elevated. I'm currently on doxycyclline again. Been on others also no herx never had one. As the infection control doc said it's like being shot with a bullet the bullet exits and your're left with the damage to repair. In my case loss of taste and smell and anxiety and fears. I hate to jinx myself but been on the doxy about 10 and seemed taste a bit and smell and back pain less. Cross fingers and toes. What's that med Brian? Can't seem to find it? Love Phillipa
Posted by qbsbrown on April 2, 2010, at 21:33:16
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 1, 2010, at 23:51:16
> Brian, How did ECT work out for you and why did you have it?
ECT has been the only thing that's helped alliviate some of the psychotic/schizo phenomenea that i've been experiencing since my benzo cold turkey and MS diagnosis.
I'm desperately trying to find a way to get more done, but i do not have health insurance,, so i need to come up with about 3k for 6 more sessions.
I haven't been able to work, and haven't found any family that can help.Brian
Posted by qbsbrown on April 2, 2010, at 21:35:44
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 1, 2010, at 23:50:19
i'm sorry to hear of the health issues and surgeries. Such a pain.
Yes, demand a spinal tap to rule things out.
Brian
Posted by qbsbrown on April 2, 2010, at 21:39:54
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by morganator on April 2, 2010, at 14:05:35
> Brian, I don't have any issues with muscle loss-weakness, rigidity, soreness, but no muscle loss. Does this eliminate the possibility of MS?
>
> One thing that is most disturbing is when I try to contract my muscles sometimes, especially in my legs, and they simply do not respond in a healthy normal way. It often keeps me from wanting to go to the gym, which had been something I did religiously for years.That wouldn't rule out anything. MS symptoms have an ENORMOUS range. Anytyhing that attacks your CNS, and having issues with your spine and brain could create anything. Very rare to find MS patients that have the same symptoms
Posted by qbsbrown on April 2, 2010, at 21:41:59
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 2, 2010, at 17:29:03
> I also feel numbing and tingling sensations throughout my face. Is this a common symptom of MS?
That is a huge sign, yes
Posted by qbsbrown on April 2, 2010, at 21:47:03
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by Phillipa on April 2, 2010, at 20:23:31
> Yes as that is what happened to me. Spinal taps negative for even old lymes and MS also MRI no evidence of either. But IGG remains elevated. I'm currently on doxycyclline again. Been on others also no herx never had one. As the infection control doc said it's like being shot with a bullet the bullet exits and your're left with the damage to repair. In my case loss of taste and smell and anxiety and fears. I hate to jinx myself but been on the doxy about 10 and seemed taste a bit and smell and back pain less. Cross fingers and toes. What's that med Brian? Can't seem to find it? Love Phillipa
I'm on copaxone phillipa. And it can take up to 3 months to become fully effective unfortunately.
Brian
Posted by morganator on April 2, 2010, at 22:13:55
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 2, 2010, at 21:41:59
> > I also feel numbing and tingling sensations throughout my face. Is this a common symptom of MS?
>
> That is a huge sign, yes
>
>
Even if it only happens periodically?Thanks by the way for getting back to me.
Posted by qbsbrown on April 2, 2010, at 22:23:53
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 2, 2010, at 22:13:55
> > > I also feel numbing and tingling sensations throughout my face. Is this a common symptom of MS?
> >
> > That is a huge sign, yes
> >
> >
> Even if it only happens periodically?
>
> Thanks by the way for getting back to me.
>
>Oh yes. Numbness, or tingling in the face is how I have heard of numerous people getting dxed.
Look at this
http://www.themcfox.com/multiple-sclerosis/ms-symptoms/numbness.htm
Posted by bleauberry on April 4, 2010, at 14:14:53
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 2, 2010, at 18:58:45
Well, let me start by saying I don't want to get sidetracked talking about lyme. You have bad symptoms and they need to be eased. That is the primary focus in the short term. Meanwhile, things look identical to the symptoms you describe need to be vigilanting examined along the journey. Don't want to put them on the shelf.
> Is it possible to have some good times when you feel pretty good even when you have a Candida or Lyme issue?
Yes. Candida for example will wax and wane depending somewhat on what you eat. Sugars of any kind equal explosive growth. Lack of sugars equals death. So you get some see-saw stuff going on based on food choices.
Lyme generally follows a 4 week wave that so many people are familiar with. It probably has something to do with the lifecycle of the organisms. Some say it even has something to do with the phase of the moon. I thought that for a while, until I realized I was looking at the full moon feeling fairly decent, while a couple months earlier I was looking at the full moon and feeling like death. I personally didn't see a relation.
When patients are undergoing treatment for Lyme, it is almost expected than one week out of the month will be particularly bad, almost like clockwork, and another week fairly good.
>I just have so many injuries and such bad anxiety and have been on so many medications, it really is hard to tell what is going on here.
Yep. I do not believe mankind has enough knowledge at this point for many medical issues. We do what we can.
>
> So, even if I had a negative result after having my blood sent to the lab that you speak of, it is possible that I may still have Lyme?Absolutely. Happens a lot. That is what keeps people undiagnosed and sick for much longer than they need be. Keep in mind, according the CDC who invented the lab test, it was NOT intended for diagnosis. It has a significant built-in error rate. That error rate does not affect widespread monitoring of regional outbreaks enough to make any difference in identifying those outbreaks, but it certainly does make a massive life changing affect on a person's individual diagnosis. This happens a lot, all the time.
>
> Is there a specific way of testing for Candida?
>Well, sort of, but who knows for sure. To me the best diagnostic test is to set out to kill candida and see what happens.
I read on the web that a home test works. I've done it a bunch of times. To me, it did work. First thing in the morning, right out of bed, work up some saliva and spit into a glass of water. Let the spit float there and see what happens. Normal spit just floats there and doesn't do much of anything. Infected spit develops milky white strings that sink to the bottom of the glass. In my case they were more like wide milky curtains, very thick. After taking anti-fungal herbs or meds for a couple weeks, those turned to thin faint strings instead of curtains. The only thing that made them completely disappear was a garlic extract, the smelly kind. The odor is what kills. Odorless garlic is not a potent antimicrobial, but strong odor garlic is amazingly potent. Also potent to the noses of people around you, which is why I couldn't keep taking it. :-)
Another test that Integrative MDs, Alternative MDs, and Naturopaths use is a urine test. Candida produces a unique identifying chemical that only it produces, and it shows up in urine. Everyone has some in minute quantities. But in excess above the norm, a problem is identified by high urine levels of that chemical. I've never done this test and cannot vouch for its accuracy one way or the other.
Killing these things doesn't feel good. When more corpses are created than can be cleared out by the kidneys and liver and lymph nodes, a bottleneck happens where the toxins build up. That causes inflammation and also frieks out the immune system. Symptoms can vary, ranging from flu-like, lethargy, depression, anxiety, psychotic-like stuff, muscle and joint pains, chronic fatigue, and such. It's called the Herxheimer reaction and in my opinion is a very powerful diagnostic tool in probing for any hidden infection.
How does lyme get a negative lab? Complicated story. The first thing the organisms do when entering the bloodstream is send out enzymes to turn off the part of the immune system that would hurt them. Thus the absence of antibodies is not unusual. They burrow deep in tissues, where the immune system can't see them. They are not free-floating in the bloodstream, and thus any lab test based on a blood sample is hit or miss. They have three forms they mutate into. One of them is a cyst. Basically a protective layer, like a cacoon, in which they live. They can go dormant for long periods of time. The immune system does not recognize the cyst as an enemy. When the organisms sense danger, they immediately go into the cyst form for protection and anti-detection.
Kind of weird, but a common pattern is this...
Someone tests negative, several times. But some doctor decides let's try antibiotics anyway and see what happens. A month later they do another blood test, and guess what, now the test is solidly positive. The antibiotics killed and weakened the organisms in a manner that exposed them from hiding. The immune system could now see them and go after them. Their dead bodies and parts of bodies are now freely flowing in the bloodstream. Now a positive lab test is obvious.Again, I don't want to get sidetracked on this issue. It may or may not apply to you. The symptoms fit, but what can I say. I do want to say, keep the issue alive until proven without a doubt one way or the other. Right now, with lab tests as the only guiding factor, there is too much doubt. That won't happen until a good antibiotic approach has been tried.
Meanwhile, the psychiatric toolbox has some options for your specific symptoms. So hopefully you'll find some things that help. Trial and error is the only way, unfortunately.
My LLMD said that one of the most useful meds he has seen with his patients is Gabapentin, in the brand form, not generic. It seems to be able to touch all of the symptoms one way or another. He was very specific about insisting on brand however. A med mentioned on the web by other llmds is Modafinil.
Posted by bleauberry on April 4, 2010, at 14:17:03
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » bleauberry, posted by morganator on April 2, 2010, at 20:09:49
> Can you have Lyme for a long time without suffering from any noticeable symptoms? Could a period of trauma/stress awaken previously dormant disease like Lyme? Is this possible.
Well, for reasons beyond human explanation at this time, that does seem to be the case.
For example in a strong healthy immune system, the organisms could lay low or in dormancy for a long time, or be kept to such small numbers that they do not cause obvious symptoms. When stress or disease weakens the environment, then they can come out to play.
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