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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 delna on November 28, 2009, at 11:32:08
Hi
Just updating and saying hi to everyone.
I'm now at the stage where I am too tired to even sit up for very long. I'm only on Lamictal 200mg. I'm not taking stimulants as they are giving me palpitations nor any antidepressant.I had some lab work done and I am **very low*** on Vitamin D3 and also low on Ferritin (Iron). I don't know how much this is contributing to the the exhaustion-still waiting on the physician. Plus there are some other irregularities which the physician needs to explain to me - like those suggesting signs of inflammation/ infection.
My liver is apparently sluggish and the doctor is saying that Lamictal can cause this...not sure about that.
So I need to sort these out before commencing treatment for OCD and depression.Thanks for listening...
Love to all
Divya
Posted by Phillipa on November 28, 2009, at 13:05:01
In reply to Update. Multiple deficiencies. Wow!, posted by delna on November 28, 2009, at 11:32:08
Divya you do have some problems. Yes the low B12 can make you tired. The liver is worrisome to me. Please write and please keep updating. Sounds like I don't know what but not mental. Love Phillipa
Posted by delna on November 28, 2009, at 13:49:39
In reply to Re: Update. Multiple deficiencies. Wow! » delna, posted by Phillipa on November 28, 2009, at 13:05:01
> you do have some problems. Yes the low B12 can make you tired. The liver is worrisome to me. Please write and please keep updating. Sounds like I don't know what but not mental. Love Phillipa
Thanks for the concern, Phillipa
My physician just called. He said the Vit D3 and Iron levels are so low that they must be what is making me extra tired and unable to tolerate my meds. My Vit B 12 is normal BTW.
Liver, he was not too worried about. Minor issues only.I am going to see a specialist soon because there is no reason my vitamin/iron levels should have dropped so much. Something must be going on because its not like I have a bad diet. Maybe some infection. I used to work with microbes like exotic parasites and fungi all the time as part of my masters degree. I was really careless in the lab so I wasn't always safe. But that was 10 years ago. Still there could be some hidden infection from then.
Anyway,the doctor said that both these deficiencies alone are definitely causing a lot of the fatigue...and when they are fixed I should be better and then only should I add any AD's etc.
Love
D
Posted by floatingbridge on November 28, 2009, at 15:57:51
In reply to Re: Update. Multiple deficiencies. Wow! » Phillipa, posted by delna on November 28, 2009, at 13:49:39
Delna,
What were you iron and D3 levels? Will you be starting high dose d3 therapy?
Good luck--hope this treatment helps with your recovery,
fb
Posted by Phillipa on November 28, 2009, at 19:27:14
In reply to Re: Update. Multiple deficiencies. Wow! » delna, posted by floatingbridge on November 28, 2009, at 15:57:51
I do agree with your doc. And yes you sure could have contracted some infection etc. When will you know? Any further testing scheduled? Love Phillipa
Posted by Alexanderfromdenmark on November 29, 2009, at 12:53:38
In reply to Update. Multiple deficiencies. Wow!, posted by delna on November 28, 2009, at 11:32:08
What's your thyroid like?
Posted by bleauberry on November 29, 2009, at 14:20:30
In reply to Re: Update. Multiple deficiencies. Wow! » Phillipa, posted by delna on November 28, 2009, at 13:49:39
A common underlying cause of low Vit D and iron is an ongoing chronic pathogenic infection. Lyme is just one of a dozen possibilities. This is a new area of discovery and not likely to be known by more than 20% of doctors. Whenever Vit D is really low, the red flag for an unsuspected chronic infection has to be respected. This is espcially highly significant when psychiatric symptoms are part of the clinical picture.
In other words, it's not the low D or low iron causing the fatigue and psych symptoms...it is something else causing them to be low. Both the invader and the low levels are causing symptoms, not one or the other.
Unfortunately there are no accurate ways to test for the various bacterial or parasite infections. Negative results are common, but those patients with negative results go on to improve markedly when treated as if they were infected, on a hunch or based on clinical symptoms. Actually, the diagnosis should be clinical, not lab. But sadly, most doctors...especially the infectious disease specialists...really suck at this stuff.
Blind challenge tests with various antibiotics or herbs are the best way to rule in or rule out a suspect. If infected, you will feel like absolute crap after starting one as the Herxheimer reaction begins.
It only takes a few minutes in the sun to get your daily Vit D, and if you consume dairy products then you get even more. If you take a vitamin, even more. Regardless, Vit D should not be low unless there is a cause. If you are completely housebound with zero sun exposure to skin and zero intake of any foods with Vit D then I could see your D being low. Other than that, it looks more serious.
It should be no surprise that an estimated 30% of chronic psychiatrict symptoms are caused by unsuspected infections. Lyme is probably the most common well known name, but certainly not the only one.
> > you do have some problems. Yes the low B12 can make you tired. The liver is worrisome to me. Please write and please keep updating. Sounds like I don't know what but not mental. Love Phillipa
>
>
>
> Thanks for the concern, Phillipa
> My physician just called. He said the Vit D3 and Iron levels are so low that they must be what is making me extra tired and unable to tolerate my meds. My Vit B 12 is normal BTW.
> Liver, he was not too worried about. Minor issues only.
>
> I am going to see a specialist soon because there is no reason my vitamin/iron levels should have dropped so much. Something must be going on because its not like I have a bad diet. Maybe some infection. I used to work with microbes like exotic parasites and fungi all the time as part of my masters degree. I was really careless in the lab so I wasn't always safe. But that was 10 years ago. Still there could be some hidden infection from then.
>
> Anyway,the doctor said that both these deficiencies alone are definitely causing a lot of the fatigue...and when they are fixed I should be better and then only should I add any AD's etc.
> Love
> D
Posted by delna on November 29, 2009, at 14:55:57
In reply to Re: Update. Multiple deficiencies. Wow!, posted by bleauberry on November 29, 2009, at 14:20:30
> A common underlying cause of low Vit D and iron is an ongoing chronic pathogenic infection. Lyme is just one of a dozen possibilities. This is a new area of discovery and not likely to be known by more than 20% of doctors. Whenever Vit D is really low, the red flag for an unsuspected chronic infection has to be respected. This is espcially highly significant when psychiatric symptoms are part of the clinical picture.
>
> In other words, it's not the low D or low iron causing the fatigue and psych symptoms...it is something else causing them to be low. Both the invader and the low levels are causing symptoms, not one or the other.
>
> Unfortunately there are no accurate ways to test for the various bacterial or parasite infections. Negative results are common, but those patients with negative results go on to improve markedly when treated as if they were infected, on a hunch or based on clinical symptoms. Actually, the diagnosis should be clinical, not lab. But sadly, most doctors...especially the infectious disease specialists...really suck at this stuff.
>
> Blind challenge tests with various antibiotics or herbs are the best way to rule in or rule out a suspect. If infected, you will feel like absolute crap after starting one as the Herxheimer reaction begins.
>
> It only takes a few minutes in the sun to get your daily Vit D, and if you consume dairy products then you get even more. If you take a vitamin, even more. Regardless, Vit D should not be low unless there is a cause. If you are completely housebound with zero sun exposure to skin and zero intake of any foods with Vit D then I could see your D being low. Other than that, it looks more serious.
>
> It should be no surprise that an estimated 30% of chronic psychiatrict symptoms are caused by unsuspected infections. Lyme is probably the most common well known name, but certainly not the only one.
thanks for that- it makes a lot of sense. I agree these levels shouldn't go so low and that the common link seems to be an infection. Especially since my ESR and WBC are both raised. As you said, finding out what is causing this is hard and my current doctors just want to raise the levels- not really investigate the cause. But I am going to seriously insist that this is looked into further. In fact I just had these tests randomly- no one doctor suggested them. They did mention them in passing...but that is all. I think the results are alarming all the doctors I am seeing.
Of course no one believed that it could be something physical because I have no other physical symptoms apart from the fatigue. With such low levels of Vit D, I should be in a lot of pain- but I am not. Because my psychiatric symptoms started more than 2 decades ago, no one though that this *extreme* exhaustion I am having could be anything but depression getting worse.
Right now I wish I had a doctor with the intellectual curiosity of Dr House!You're right, the Vitamin D makes no sense at all. Agreed, I am pretty housebound and I do avoid the sun like the plague...but I have loads of dairy and I basically live in a topical country so even if I *leave* the house I am exposed to the sun. Same with iron, I have a good diet and for the iron to go *that* low I would need to be starving.
So you suggest blind tests with anti-parasitics, antibiotics..?
Thanks for your input
Really appreciated
Love
D
Posted by delna on November 29, 2009, at 15:01:42
In reply to Re: Update. Multiple deficiencies. Wow! » delna, posted by floatingbridge on November 28, 2009, at 15:57:51
> Delna,
>
> What were you iron and D3 levels? Will you be starting high dose d3 therapy?
>
> Good luck--hope this treatment helps with your recovery,
>
> fbThanks FB
Firstly, How are YOU doing? I saw your thread- sorry I can't add anything useful. Just want to wish you luck and hope you feel better soon.I will find out about my treatment tomorrow. I may go into hospital.
i don't have my results here so I'm not sure of the ranges but my D3 was 6 (i think it should be above 60) and my iron is 10 (i think it needs to be 50-100)
Hope you feel better soon
Love
D
Posted by delna on November 29, 2009, at 15:04:18
In reply to Re: Update. Multiple deficiencies. Wow!, posted by Alexanderfromdenmark on November 29, 2009, at 12:53:38
> What's your thyroid like?
well within normal range (somehow!?)
TC
D
Posted by bleauberry on November 30, 2009, at 19:19:11
In reply to Re: Update. Multiple deficiencies. Wow! » bleauberry, posted by delna on November 29, 2009, at 14:55:57
You might want to google the Marshall Protocol and read up on it. It very controversial and sparks heated debates. But within it is a very detailed explanation of the whole Vit D infectious disease connection.
If you supplement Vit D to get it higher, you should feel better. Unfortunately it also strengthens the pathogens, as it is their food, and eventually they will overwhelm you with their new strength. Your low D is actually your own body's wisdom in defending itself against them the best it knows how. It's low for not just a reason, but a good reason.
I am assuming there is an infectious agent involved with you, despite lack of clinical picture or history. The little I have...the timeframe, the symptoms, the mysterious lab readings...they paint a fairly obvious picture to anyone who knows what that looks like. It doesn't mean for sure that this thing that looks like a zebra is definitely a zebra, I mean, it could be a horse? To me, it has infection written all over it.
Most likely...Lyme disease primarily Borellia without the co-infections (they have different symptom patterns than yours), or mycoplasm (cell- wall-less bacteria that invade, take over, and live within our own cells).
Forget the testing. Unless you have an experienced LLMD (Lyme Literate MD) handy, this stuff is out of league of anyone else. Infectious Disease Specialists are actually the worst to see, so I suggest not doing that. A cooperative doctor who is willing to learn and explore along with you is what you want. You can actually do it by yourself without any help. It's not rocket science and does not require a degree in anything.
Tests are wrong 30% of the time, and not even available for some of the culprits. Some labs are very good, others not. So a lot works against you. Stories abound of people who have been undiagnosed for 20 years when they were very sick the whole time (fatigue, depression), and all they got was a referal to a psychiatrist for Prozac. Prozac doesn't kill the things causing the depression and fatigue. Tests were negative. They were told they didn't have anything wrong with them, it is just depression. Somewhere along the line they run into a doctor who actually knows what the heck he is doing. That's when the diagnosis finally comes...20 years and 10 doctors later. Thousands of stories like this. Including mine.
Specialists are the ones who usually pronounce life imprisonment on sick people, because they are bound by strict criteria of their trade organizations and politics of insurance. If a test is negative...despite that 30% of them erroneously are...you are not sick. You are screwed under the care of that doctor. He just guaranteed you will never get better, only worse. He has not the creativity or the freedom to do what is obvious or right.
Simple tests to rule this whole hypothesis in or rule it out:
1. Get Doxycyline. Take it at 200mg for 4 days. See what happens. Expected...maybe some slight nausea, decrease of appetite, maybe some mild diarhea, no big deal. That's a healthy non-infected person. An infected person...nearly bedridden with migraines, flu-like, aches and pains, crushing fatigue 10 times worse than ever, worse depression, feeling like the edge of death. That's called a Herxheimer reaction. It is the toxic biuldup of millions of dead corpses and their pieces overwhelming the body.
Doxy is wide spectrum so covers a lot of possibilities.
If no Herx on Doxy by day 4, stay with it for another 7 days. That is a common timeframe for any Doxy prescription. More often it is taken for months or years for acne treatment. No big risks in such a short time for you. Just to see if there is a Herx, that's the only purpose.
If no Herx on Doxy, switch to Clindaymcin. This one hits the bacteria that hide in protective cysts that Doxy doesn't impact. A form of Lyme is like that.
For a real powerhouse, Cipro. This one feels bad because it friggin works. It kills bad stuff no matter what it is or where it's hiding.
No Herx on any of these. Cool. It's only been a couple weeks and you definitively positively ruled out Lyme disease and a whole bunch of others.
What's left. Yeast. A big underdiagnosed player in your kinds of symptoms. This one is easy. Diflucan 200mg per day for a couple weeks. Again, looking for the Herx.
If you get the Herx on any of the above, you not only made a solid diagnosis, but you also have already pinpointed the med to target it. The strategy now is to reduce the dose to a tolerable level and slowly build it up as the die-off levels get lower.
There are veterinary sites on the web that sell all of the above with no need for a prescription...they are labeled for pets and thus exempt from needing a prescription for people. They are the same drugs and the same doses. And cheap.
This is hightech high accuracy inexpensive diagnostic work we can do.
I'm not saying you have an infection or not. I am saying it looks like it. I am saying it makes no sense whatsoever to NOT rule it out, or in, whichever the case. It makes TOTAL sense to rule it in or out. It would be disasterous not to. That is easy.
>
> thanks for that- it makes a lot of sense. I agree these levels shouldn't go so low and that the common link seems to be an infection. Especially since my ESR and WBC are both raised. As you said, finding out what is causing this is hard and my current doctors just want to raise the levels- not really investigate the cause. But I am going to seriously insist that this is looked into further. In fact I just had these tests randomly- no one doctor suggested them. They did mention them in passing...but that is all. I think the results are alarming all the doctors I am seeing.
> Of course no one believed that it could be something physical because I have no other physical symptoms apart from the fatigue. With such low levels of Vit D, I should be in a lot of pain- but I am not. Because my psychiatric symptoms started more than 2 decades ago, no one though that this *extreme* exhaustion I am having could be anything but depression getting worse.
> Right now I wish I had a doctor with the intellectual curiosity of Dr House!
>
> You're right, the Vitamin D makes no sense at all. Agreed, I am pretty housebound and I do avoid the sun like the plague...but I have loads of dairy and I basically live in a topical country so even if I *leave* the house I am exposed to the sun. Same with iron, I have a good diet and for the iron to go *that* low I would need to be starving.
>
> So you suggest blind tests with anti-parasitics, antibiotics..?
>
> Thanks for your input
> Really appreciated
> Love
> D
Posted by Katgirl on December 5, 2009, at 9:50:41
In reply to Re: Update. Multiple deficiencies. Wow! » delna, posted by bleauberry on November 30, 2009, at 19:19:11
Delan, being anemic can make you soooooooooo tired, so hopefully some iron supplementation will help. I am SO glad you have doctors who are taking you seriously and not just telling you its "all in your head". It sounds like they are being very thorough.
I was tested several years ago and was very low on vitamin D as well, but I never followed up with it. No one told me that could be a sign of infection though. That is scary. I have been tested for Lymes though, and it came back negative.
Posted by Phillipa on December 5, 2009, at 20:10:40
In reply to Re: Update. Multiple deficiencies. Wow!, posted by Katgirl on December 5, 2009, at 9:50:41
Katgirl was it the Western Blot? As Elisa is worthless. I have or had chronic lymes treated for over two years with antibiotics. Just the other day got another done with ANA, RF, Sed Rate as last one still came back positive but the antibodies always there. I'm horribly tired. Got CBC and electrolytes also had to fight to get them four years last time done. Phillipa
Posted by Katgirl on December 6, 2009, at 10:16:24
In reply to Re: Update. Multiple deficiencies. Wow! » Katgirl, posted by Phillipa on December 5, 2009, at 20:10:40
Im not sure, I'll have to check. Thanks Phillipa
Posted by floatingbridge on December 6, 2009, at 13:04:28
In reply to Re: Update. Multiple deficiencies. Wow! » Katgirl, posted by Phillipa on December 5, 2009, at 20:10:40
> Katgirl was it the Western Blot? As Elisa is worthless. I have or had chronic lymes treated for over two years with antibiotics. Just the other day got another done with ANA, RF, Sed Rate as last one still came back positive but the antibodies always there. I'm horribly tired. Got CBC and electrolytes also had to fight to get them four years last time done. Phillipa
Hi Phillipa,
Crazy to have to fight for some of these tests, isn't it? So all your screens came back negative except for the sed. rate?
Sorry you're dealing w/ fatigue--that stinks.
fb
Posted by Phillipa on December 6, 2009, at 20:28:24
In reply to Re: Update. Multiple deficiencies. Wow! » Phillipa, posted by floatingbridge on December 6, 2009, at 13:04:28
No fb results not back yet and the last one done in 2006 was still positive for lymes the health dept called and the doc said no more antibiotics. I feel the fatigue is really due to life circumstanes kids , husband, money, osteo. Just when I was feeling better wham "honey you got the back and bones of a l00 year old". Now that hurts and stings and wipes you out as osteo won't go away. It's like a cancer. Love Jan
Posted by floatingbridge on December 6, 2009, at 22:06:32
In reply to Re: Update. Multiple deficiencies. Wow! » floatingbridge, posted by Phillipa on December 6, 2009, at 20:28:24
Phillipa,
Yes, that is a blow--Bad news increases stress and mood drops--I am sorry. It must really sting right now. Hang-in there. Maybe a pdoc appt. would be good to tune up your meds?
Let me know how you tests go,
fb
> No fb results not back yet and the last one done in 2006 was still positive for lymes the health dept called and the doc said no more antibiotics. I feel the fatigue is really due to life circumstanes kids , husband, money, osteo. Just when I was feeling better wham "honey you got the back and bones of a l00 year old". Now that hurts and stings and wipes you out as osteo won't go away. It's like a cancer. Love Jan
Posted by Phillipa on December 7, 2009, at 19:12:57
In reply to Re: Update. Multiple deficiencies. Wow! » Phillipa, posted by floatingbridge on December 6, 2009, at 22:06:32
Thanks fb well got results today and now my IGM for the lymes test is still positive. Cant find any search that doesn't say this means active disease. I seriously was freaking out as also blood sugar was up to 126 not fasting though. Not worried about the BS as went to my Daughter's house and she still has the glucose monitor from her gestational diabetes checked non fasting and 96 her soon to be husband did it for me. Interesting is that now the girl on the phone said ANA is negative? I don't get it does this mean no more thyroid disease? Love Phillipa
This is the end of the thread.
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