![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 32 to 56 of 56. Go back in thread:
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.
Posted by bulldog2 on April 4, 2010, at 17:47:56
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » morganator, posted by Phillipa on March 30, 2010, at 0:23:45
> I have back disc, spurs, narrowing of spinal columm, osteoporosis and the infection control specialist just gave me soma for the muscle cramping and tightness. I didn't do well with it last night. So for now none. But that might be an option? I am positive for 12 years for lymes and was treated two years now still positive on doxycycline and it seems to also help pain. Phillipa
Have you ever been tested for MS? You keep go round and round on the lyme's wagon and you have been treated with antibiotics more than once. Since lyme's and MS can present similar symtoms perhaps an MS test is inorder.
Posted by morganator on April 4, 2010, at 18:00:32
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » morganator, posted by bleauberry on April 4, 2010, at 14:17:03
> > 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.
>
>Yeah I've always had a wicked strong immune system. Everyone around me would get sick and I either wouldn't or I would have some symptoms for a day and that would be it. But the last 2 and a half years have been hell and I have been sick bad a few times. So, I guess it wouldn't be surprising to me if I did carry something around with me for a while without it really affecting my health.
Posted by bulldog2 on April 4, 2010, at 18:05:27
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 1, 2010, at 21:59:44
> > 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:)
>
>Brain
How are you being treated for MS? You mention injecting every day. What are you injecting?
Thanks
bulldog2
Posted by qbsbrown on April 4, 2010, at 18:09:50
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 4, 2010, at 18:00:32
> > > 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.
> >
> >
>
> Yeah I've always had a wicked strong immune system. Everyone around me would get sick and I either wouldn't or I would have some symptoms for a day and that would be it. But the last 2 and a half years have been hell and I have been sick bad a few times. So, I guess it wouldn't be surprising to me if I did carry something around with me for a while without it really affecting my health.Morganator, I was always healthy, I would never get sick. Previous to being dxed MS, and since, I get many 1 day colds. I never used to get cold. It's autoimmune disorder, so i guess it's part of it.
I really hope that you are able to rule MS out. Demand the spinal tap, and maybe even a Evoked Potential Testing.
Find a good neurologist.
Had I not PUSHED the hell out of my drs to find something, they wouldn't have. they didn't believe me, and were reluctant to do tests, and even as they did the tests, said they did not expect to find anything. Screw them. Your own intuition knows better than any dr'Brian
Posted by qbsbrown on April 4, 2010, at 18:11:43
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by bulldog2 on April 4, 2010, at 18:05:27
> > > 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:)
> >
> >
>
> Brain
>
> How are you being treated for MS? You mention injecting every day. What are you injecting?
>
> Thanks
> bulldog2Bulldog2,
I inject myself with a medication called Copaxone everyday.
Brian
Posted by bleauberry on April 4, 2010, at 18:24:20
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bulldog2 on April 4, 2010, at 17:47:56
> > I have back disc, spurs, narrowing of spinal columm, osteoporosis and the infection control specialist just gave me soma for the muscle cramping and tightness. I didn't do well with it last night. So for now none. But that might be an option? I am positive for 12 years for lymes and was treated two years now still positive on doxycycline and it seems to also help pain. Phillipa
>> Have you ever been tested for MS? You keep go round and round on the lyme's wagon and you have been treated with antibiotics more than once. Since lyme's and MS can present similar symtoms perhaps an MS test is inorder.
I have come to know this topic very well. Indeed MS and lyme can look identical.
MS has in fact been improved and even totally cured by treating it as if lyme was the conditioni instead. And because the cure happened on antibiotics, when the disease was MS, the logical conclusion is it wasn't MS, even though it had the MRI brain lesions and everything. It was lyme.
So, MS can be treated with anti-lyme treatments. But, the reverse is hardly ever true. All that can be done for MS is to ease the symptoms and slow the progression of the disease. There is nothing to stop it or cure it. That is, unless it is lyme in disguise.
For someone testing positive for lyme and displaying the clinical presentation of lyme, it would be a disaster to instead embark on treating it as if it was MS. Even if a clinical exam for MS was done and showed brain lesions of MS, again, that happens with lyme. And supposing it was in fact MS, there isn't much you can do about that, so why put a big emphasis on that path?
Patients like Phillipa that have long histories of treating lyme are not unusual. There is much we don't know. The organisms rapidly mutate and change. There is no single antibiotic protocol that works for everyone. The one Phillipa is on may not be the right choice. There are several others much more potent against lyme. And it could very well be the co-infections of bartonella and babesia and playing major roles here, neither of which will be impacted at all by the meds phillipa is currently taken or has taken in the past.
Chronic late lyme is a long road. But there exist many happy endings. It takes a lot of persistence, patience, and trials of various approaches.
I don't think it is MS. Even if it was, it would not change a thing.
On this topic I think it deserves mention, since most people are not aware, that the term lyme is a very broad term. We're talking borellia, bartonella, babesia, and a limitless myriad of complications anywhere in the person's physiology. Lyme is a whole bunch of stuff lumped into one small word.
Posted by morganator on April 4, 2010, at 18:44:12
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 4, 2010, at 18:24:20
Thanks everyone for your responses. I will be making a trip to the doctor soon. I guess I just need to start demanding things and try to back it up with some reasoning and logic.
Posted by qbsbrown on April 4, 2010, at 18:54:36
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 4, 2010, at 18:24:20
> > > I have back disc, spurs, narrowing of spinal columm, osteoporosis and the infection control specialist just gave me soma for the muscle cramping and tightness. I didn't do well with it last night. So for now none. But that might be an option? I am positive for 12 years for lymes and was treated two years now still positive on doxycycline and it seems to also help pain. Phillipa
> >
>
> > Have you ever been tested for MS? You keep go round and round on the lyme's wagon and you have been treated with antibiotics more than once. Since lyme's and MS can present similar symtoms perhaps an MS test is inorder.
>
> I have come to know this topic very well. Indeed MS and lyme can look identical.
>
> MS has in fact been improved and even totally cured by treating it as if lyme was the conditioni instead. And because the cure happened on antibiotics, when the disease was MS, the logical conclusion is it wasn't MS, even though it had the MRI brain lesions and everything. It was lyme.
>
> So, MS can be treated with anti-lyme treatments. But, the reverse is hardly ever true. All that can be done for MS is to ease the symptoms and slow the progression of the disease. There is nothing to stop it or cure it. That is, unless it is lyme in disguise.
>
> For someone testing positive for lyme and displaying the clinical presentation of lyme, it would be a disaster to instead embark on treating it as if it was MS. Even if a clinical exam for MS was done and showed brain lesions of MS, again, that happens with lyme. And supposing it was in fact MS, there isn't much you can do about that, so why put a big emphasis on that path?
>
> Patients like Phillipa that have long histories of treating lyme are not unusual. There is much we don't know. The organisms rapidly mutate and change. There is no single antibiotic protocol that works for everyone. The one Phillipa is on may not be the right choice. There are several others much more potent against lyme. And it could very well be the co-infections of bartonella and babesia and playing major roles here, neither of which will be impacted at all by the meds phillipa is currently taken or has taken in the past.
>
> Chronic late lyme is a long road. But there exist many happy endings. It takes a lot of persistence, patience, and trials of various approaches.
>
> I don't think it is MS. Even if it was, it would not change a thing.
>
> On this topic I think it deserves mention, since most people are not aware, that the term lyme is a very broad term. We're talking borellia, bartonella, babesia, and a limitless myriad of complications anywhere in the person's physiology. Lyme is a whole bunch of stuff lumped into one small word.
>
>Bleauberry,
Without health insurance and/or money, are there any ways to get tested for lymes disease?
I've FOR SURE experienced this
"In rare cases untreated Lyme disease may cause frank psychosis, which has been mis-diagnosed as schizophrenia or bipolar disorder. Panic attack and anxiety can occur, also delusional behavior, including somatoform delusions, sometimes accompanied by a depersonalization or derealization syndrome, where the person begins to feel detached from themselves or from reality."
I see my neurologist in a week, can i ask for lymes disease testing?
I know that when they found the positive for MS, they then ran a serious of tests from my blood and cerebral spinal fluid to look for things that may mimimc MS, all came up negative. I DON'T think that lymes disease was one of them
Regards,
Brian
Posted by Phillipa on April 4, 2010, at 20:26:21
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bulldog2 on April 4, 2010, at 17:47:56
Bulldog yes been tested twice by a neurologist who did MRI and spinal taps and looked me in the eye and said you do not have MS. But I do have six positive bands on Western blot and Infection Control Specialist is now treating. See him again in about six weeks. Phillipa
Posted by Phillipa on April 4, 2010, at 20:37:25
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 4, 2010, at 18:24:20
BB thanks. Already the infection control doc said the biaxin xl took my taste and smell. He said there are "so many critters out there including stars" And the least aggressive antibiotics now. I first received years ago doxy only l0 days though. That Infection control doc refused to belive I wasn't cured so it took years til I found this doc and first he put in a pic line and gave rocephin Iv and then the biaxin for two years three months on and three off. I felt so much better on the biaxin. Went went off all of a sudden was out having fun and felt like I fell from the sky to the earth. Wierdest thing ever. And then the loss of taste and smell began shortly thereafter. My choice this time was the doxy. And sometimes I think I feel a bit better but don't want to jinx self. Love Phillipa
Posted by Phillipa on April 4, 2010, at 20:39:24
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 4, 2010, at 18:54:36
Brian absolutely in fact demand it!!!!! Love Phillipa
Posted by morganator on April 4, 2010, at 20:43:44
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by bleauberry on April 4, 2010, at 18:24:20
So the only real way of knowing if I might have Lyme is to start on the appropriate antibiotic treatments?
And what is a Herx reaction and how would I know that I am having one? I'm going to look it up but wanted to ask anyway.
Posted by qbsbrown on April 4, 2010, at 20:46:34
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » qbsbrown, posted by Phillipa on April 4, 2010, at 20:39:24
> Brian absolutely in fact demand it!!!!! Love Phillipa
What do I say? Hey, can we test for lymes disease just to rule out other things?
Not sure if this is just a formality checkup to see how my MS symptoms are, and how I am reacting to the injections. BTW, some MS symptoms have improved, perhaps my injections are helping some.
Brian
Posted by Phillipa on April 4, 2010, at 21:46:14
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by qbsbrown on April 4, 2010, at 20:46:34
Brian maybe ask the doc first Did you test me for lyme's disease when you did the spinal tap and MRI? If he says no ask him if he would mind. You know MS can go into remission for years and years also right? Another babbler has it and it hasn't flaired in over six years that I know of. Maybe your're going into remission? I sure hope so. Love Phillipa
Posted by Phillipa on April 4, 2010, at 21:47:36
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » bleauberry, posted by morganator on April 4, 2010, at 20:43:44
Morgan I looked it up too and know I've never had one don't think you need one but that's my opinion. Love Phillipa
Posted by morganator on April 4, 2010, at 22:41:25
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » morganator, posted by Phillipa on April 4, 2010, at 21:47:36
I think I need to try a course of the antibiotics that might cause a herx reaction in order to determine if there is some form of bacteria wreaking havoc on my system.
Posted by manic666 on April 5, 2010, at 3:55:14
In reply to Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on March 29, 2010, at 22:48:10
lots of critters out ther even in the stars//wwwwwhat?????? gets worse on a full/ moon?????????have as many test as you like it may still not show/??????? take antibiotics just to test prob?????no wonder antibiotics dont work any more///steven speilburg,want to turn this into a new horror movie, but will cut the script as its been going on 10 years.
Posted by Phillipa on April 5, 2010, at 19:50:16
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression, posted by morganator on April 4, 2010, at 22:41:25
Morgan it is worth a try. Which antibiotic are you thinking of? By stars I'm referring to the long star tick which resides in NC and other localities. Doesn't produce same bacteria as NE lymes. It exists all around the world but different bacterias. Let me know the dose and antibiotic? Thanks Phillipa
Posted by morganator on April 5, 2010, at 19:52:50
In reply to Re: Anxiety/Fatigue/Muscle Stiffness/Depression » morganator, posted by Phillipa on April 5, 2010, at 19:50:16
I want to discuss the idea with my primary care physician first. I don't know when I might pursue this but when I do I will keep you updated.
This is the end of the thread.
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