![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 27. This is the beginning of the thread.
Posted by sunshine25 on November 1, 2008, at 23:41:25
I am on a lot of medications I am currently weaning off of them one at a time. I believe that one of them is ruining my immune system. This is just a theory I have no real proof it is just that I never got cold sores in my life and now how them almost every other week. I feel sick and tired all the time, I am in a mental fog. I was tested for lymes disease twice, both tests are negative. I have chronic facial pain and take vicoden as needed, did start lyrica but that was just another side effect fest and I am trying to get away from Rx's.
I am at a loss as to what to do. My pysch doc is very unsupportive about me going off of Rx's but I feel like I am just at my wits end. I am a walking pharmacy!!!
I am on all these Rx's and still not a happy productive person, what good are they then. Now non-stop cold sores on top of all of this other crap.
I am at a loss. I have been looking for help, looking on curezone but am fearful. I don't want to start yanking root canals out. That website makes my anxiety way worse. But what is the answer?
My psych doc says the coldsores are due to pain and stress, I don't know it is like the final straw, now I don't want to go out in public because I feel embarassed. Yes I know thats not good or normal, but I'm neither of those things.
It would be one thing if it was every once in a while but this is non-stop every other week or more often. My immune system is destroyed!
Could this be from topamax? or vicoden? I have stopped prozac 34days ago still having some withdrawals, just stopped wellbutrin 5 days, was taking famvir for cold sores but was still having outbreaks and I would like to have a little bit of a liver left for my 40's so I stopped that.
I take lysine, reishi and atralagus(sp?) I feel very depressed, and not "depression" this is depressed with identifiable cause I think there is a difference.
Sorry to dump all of this here but I am without an outlet and I do read these boards and I know there are a lot of informed people here. I am hoping someone has an idea.
my "offical diagnosis" is bipolar disorder but sometimes I wonder if that is even correct, I wish there was a blood test for bipolar, I also am diagnosed with trigeminal neuralgia, ocd, anxiety and panic attacks. I feel sorry for myself right now. I do. I know that there are people who have it worse and I wish I could be more zen.
treatments tried.... neurofeedback
accupuncture (it does hurt don't let them lie to you!)
meditation
hypnosis
Posted by yxibow on November 2, 2008, at 2:34:39
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
Those of us on polypharmacy can feel like a walking pharmacy. I stare at the collection of jars -- wish I could throw them out of a window and wind back time but that's not the Here and Now.
I can't give you any comments on the alternative options you are on.
What I can say though is that withdrawals, and anxiety can feel like an illness, but its just the tiring sensation that one gets from the fight or flight system I imagine.
Have you ever had a simple blood test for viral load and had your WBC measured?
That's usually a good indicator of anything out of array.
I do get a flu shot every year because I do believe that its possible for anxiety to lower immunity a little bit, at least in my own body -- that's just a personal thing. I've never had my viral load out of range except if I have a flu or something, that would be normal, and my WBC has been pretty much normal too.
However these days they recommend it for most people, because people can be carriers and not present the flu anyhow, and the vaccine supply has increased (in the US anyhow)-- tidings
Jay
Posted by JadeKelly on November 2, 2008, at 4:28:57
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
> I am on a lot of medications I am currently weaning off of them one at a time. I believe that one of them is ruining my immune system. This is just a theory I have no real proof it is just that I never got cold sores in my life and now how them almost every other week.
So the cold sores came prior to the weaning of drugs? Cold sores can come from anxiety, so if you are suffering acute withdrawal of some kind, that could be it. Also, there are plenty of treatments for that, maybe see a doc such as a dermatologist that could treat you until you get the other stuff figured out?I feel sick and tired all the time, I am in a mental fog. I was tested for lymes disease twice, both tests are negative. I have chronic facial pain and take vicoden as needed, did start lyrica but that was just another side effect fest and I am trying to get away from Rx's.
You need another opinion, maybe not a pdoc, someone willing to take the time to do a series of tests. More than just lyme's disease.
>
> I am at a loss as to what to do. My pysch doc is very unsupportive about me going off of Rx's but I feel like I am just at my wits end. I am a walking pharmacy!!!
Maybe time for a new pdoc? Only you know your condition, if pdoc is just wanting to protect your mental health thats one thing. Ignoring real, valid, concerns, quite another.
> I am on all these Rx's and still not a happy productive person, what good are they then. Now non-stop cold sores on top of all of this other crap.
>
> I am at a loss. I have been looking for help, looking on curezone but am fearful. I don't want to start yanking root canals out. That website makes my anxiety way worse. But what is the answer?Get a second opinion. Doesn't sound like your pdoc has much compassion (like the rest do, jk)
>
> My psych doc says the coldsores are due to pain and stress, I don't know it is like the final straw, now I don't want to go out in public because I feel embarassed. Yes I know thats not good or normal, but I'm neither of those things.Its not good or normal? Of course it is!!! We would all be uncomfotable with that. Cmon, you're being hard on yourself. Its not your fault. Its bad enough when we feel bad, but to have it showing up all over the place, of course your ready to ditch meds! Only YOU know if something feels "wrong"! What would not be good, or normal, is to feel as sick as you do and not find help. Which is obviously what you're looking for!
>
> It would be one thing if it was every once in a while but this is non-stop every other week or more often. My immune system is destroyed!
>
> Could this be from topamax? or vicoden? I have stopped prozac 34days ago still having some withdrawals, just stopped wellbutrin 5 days, was taking famvir for cold sores but was still having outbreaks and I would like to have a little bit of a liver left for my 40's so I stopped that.Unless you have mental illness that requires meds, I think your right to detox from meds if they aren't helping anyway. Just have a plan in place in case withdrawals are unbearable.
>
> I take lysine, reishi and atralagus(sp?) I feel very depressed, and not "depression" this is depressed with identifiable cause I think there is a difference.So do I.
>
> Sorry to dump all of this here but I am without an outlet and I do read these boards and I know there are a lot of informed people here. I am hoping someone has an idea.
>
> my "offical diagnosis" is bipolar disorder but sometimes I wonder if that is even correct, I wish there was a blood test for bipolar, I also am diagnosed with trigeminal neuralgia, ocd, anxiety and panic attacks. I feel sorry for myself right now. I do. I know that there are people who have it worse and I wish I could be more zen.
Hah! If your looking for "zen" you may have come to the wrong place. On the other hand, when I found this site, and saw people who actually spoke of depression with out shame or judgement, I did feel a little more "zen"!
>
> treatments tried.... neurofeedback
> accupuncture (it does hurt don't let them lie to you!)
> meditation
> hypnosisOK, so you do have some diagnosis (that in my opinion should be treated). But maybe with different meds? A close family member is Bi-polar and takes seroquel and Depakote. We made pdocs take him off all other anti-psych meds, as they made him crazy and zombie like. I like seroquel as there are no wierd side effects. Fatigue in the beginning, thats about it. No "flat" affect.
Also, how bout that second opinion? At least you'll have more info, to confirm or question current diagnosis, and address your fears and anxiety that frankly, I think are normal. Wish I had more for you. Its understandable that you are at your wits end, BUT DON'T BLAME YOURSELF! Been there done that, I still feel like crap, but I don't blame myself.
Get that second opinion, from a reputable Doc. and stop with the geuss work for now. It will lower your stress to let a good doc do some tests, and provide some accurate info that you can trust. Just for now. You need a break!!!
I wish I could offer more of a scientific viewpoint, even if I could tho, I think you are safer in the hands of a caring Doctor.
Hope something here helped, let us know how u are. I will look for your posts!Jade
>
>
Posted by Phillipa on November 2, 2008, at 10:03:51
In reply to Re: medication lowering immunity?, posted by JadeKelly on November 2, 2008, at 4:28:57
I did test positive for chronic lymes same time my hasimototos thyroiditis was diagnosed. I've been sick since that time. Been treated multiple times with antibiotics even rocephin Iv . Was told it was gone and always will test positive for lymes which I do. I just started lipoic acid. Give it a google and welcome to babble. No idea is this stuff will help. Phillipa boy I relate to how you feel.
Posted by azalea on November 2, 2008, at 10:19:52
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
What are your current meds and dosages?
> I am on a lot of medications I am currently weaning off of them one at a time. I believe that one of them is ruining my immune system. This is just a theory I have no real proof it is just that I never got cold sores in my life and now how them almost every other week. I feel sick and tired all the time, I am in a mental fog. I was tested for lymes disease twice, both tests are negative. I have chronic facial pain and take vicoden as needed, did start lyrica but that was just another side effect fest and I am trying to get away from Rx's.
>
> I am at a loss as to what to do. My pysch doc is very unsupportive about me going off of Rx's but I feel like I am just at my wits end. I am a walking pharmacy!!!
>
> I am on all these Rx's and still not a happy productive person, what good are they then. Now non-stop cold sores on top of all of this other crap.
>
> I am at a loss. I have been looking for help, looking on curezone but am fearful. I don't want to start yanking root canals out. That website makes my anxiety way worse. But what is the answer?
>
> My psych doc says the coldsores are due to pain and stress, I don't know it is like the final straw, now I don't want to go out in public because I feel embarassed. Yes I know thats not good or normal, but I'm neither of those things.
>
> It would be one thing if it was every once in a while but this is non-stop every other week or more often. My immune system is destroyed!
>
> Could this be from topamax? or vicoden? I have stopped prozac 34days ago still having some withdrawals, just stopped wellbutrin 5 days, was taking famvir for cold sores but was still having outbreaks and I would like to have a little bit of a liver left for my 40's so I stopped that.
>
> I take lysine, reishi and atralagus(sp?) I feel very depressed, and not "depression" this is depressed with identifiable cause I think there is a difference.
>
> Sorry to dump all of this here but I am without an outlet and I do read these boards and I know there are a lot of informed people here. I am hoping someone has an idea.
>
> my "offical diagnosis" is bipolar disorder but sometimes I wonder if that is even correct, I wish there was a blood test for bipolar, I also am diagnosed with trigeminal neuralgia, ocd, anxiety and panic attacks. I feel sorry for myself right now. I do. I know that there are people who have it worse and I wish I could be more zen.
>
> treatments tried.... neurofeedback
> accupuncture (it does hurt don't let them lie to you!)
> meditation
> hypnosis
>
>
Posted by yxibow on November 2, 2008, at 13:54:41
In reply to Re: medication lowering immunity? » sunshine25, posted by azalea on November 2, 2008, at 10:19:52
I'm not really a fan of the "dump your doctor" comments I see a lot -- anyone can have an opinion, but maybe there's a reason why the doctor wants his patient on the medications.
I did gloss over that too, what are the doses of medications and why are you taking (x) number of them?
And more importantly why are you wanting (other than maybe you're not feeling the world, that could be) to go off of them ?
There are reasons for polypharmacy sometimes.
And as I said before, going off of things can make someone feel completely sick, especially if its rapid. Especially SNRIs as an example, but lots of medications.
A second opinion is perfectly fine, but "dumping" a doctor -- I don't think some people realize it until they've done that how much of a time it takes to build a personal relationship. Now if you're at loggerheads, well, then maybe it comes to a point where it isn't the right time.But then your doctor should protect his license and his medical oath and do some minimal amount of referring you to someone else.
Because we all have different doctors and what goes on in that office may not come out here -- I'm not saying anybody lies or doesn't express their true feelings, I'm just saying that nobody knows the journey that someone has taken through a doctor or through many doctors.
We offer and should offer only our own experience -- every single person on here has a different set of medication doses, guaranteed down to the mg, and a different biochemical imbalance and circuitry, guaranteed.-- tidings
Jay
Posted by JadeKelly on November 2, 2008, at 16:20:57
In reply to Re: medication lowering immunity? » azalea, posted by yxibow on November 2, 2008, at 13:54:41
Hi,
I don't think its responsible or our right to tell a person to just go "dump your Pdoc". I agree.
This girl feels very sick and its causing her a lot of anxiety, and she feels she has nowhere to go. Makes sense to me, that she should seek "second opinion" from Docs not even in the field of psychiatry, as I think I mentioned a few times in my post. Her Pdoc feels her "illnesses" are due to stress. She feels she has a problem with her immune system, etc. If I was feeling that much anxiety over my physical health, I would go get some tests done, etc. Wouldn't you? In addition, I don't think seeing a dermatologist is a stretch, considering what she's dealing with.
Have you ever tried to get medical advice from a PDoc (outside the realm of psychiatry?) Mine wouldn't even discuss giving me something for a side effect caused by a med he prescibed. He said he'd been out of general practice too long, and I needed to see my internest.
Btw-I've had the same Pdoc for 15 years, we get along ok, he's the only one I've ever seen.
I'll re-read my post tho-I certainly didn't mean to tell her to "dump" her Pdoc, especially as she has a diagnosis of Bi-Polar. If I sounded like "go dump your PDoc", I will re-post to her.I'll be careful how I say things re: Docs from now on. Thanks.
Jade
Posted by JadeKelly on November 2, 2008, at 16:23:54
In reply to Re: medication lowering immunity?, posted by JadeKelly on November 2, 2008, at 16:20:57
Posted by yxibow on November 2, 2008, at 16:38:11
In reply to Re: medication lowering immunity?, posted by JadeKelly on November 2, 2008, at 16:20:57
> I'll re-read my post tho-I certainly didn't mean to tell her to "dump" her Pdoc, especially as she has a diagnosis of Bi-Polar. If I sounded like "go dump your PDoc", I will re-post to her.
>
> I'll be careful how I say things re: Docs from now on. Thanks.
Oh no, I wasn't trying to direct it at anyone, that's why I just wrote it as a side comment. If I misinterpreted you or anyone, it wasn't to single out someone.I was just wistfully thinking, hmm... maybe the doctor is thinking that she is having a hard time but its a bit unwise to unravel every medication and have a worse time.... I don't know. It was just a stream of consciousness.
-- no worries
-- Jay
Posted by JadeKelly on November 2, 2008, at 16:39:17
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
Hi Sunshine!
Just wanted to clarify. I DO think seeing a doctor(s) re: your health concerns, maybe some tests, etc. is a good idea (you're dealing with a lot there and I think it would reduce your stress level to have some answers) I think sticking with your current PDoc is probably best right now as he/she knows your diagnosis, meds, etc. All just my opinion!
Hope you're feeling better!
Jade
Posted by JadeKelly on November 2, 2008, at 16:54:16
In reply to Re: medication lowering immunity? » JadeKelly, posted by yxibow on November 2, 2008, at 16:38:11
Yxibow,
You make a valid point. I'm new on Babble, so maybe you saved me from REALLY sticking my foot in my mouth in some other post! It will remind me to be careful when it comes to giving advice. I did re-post her by the way.
Have a good evening!
Jade
Posted by sunshine25 on November 2, 2008, at 19:15:31
In reply to Re: Yxibow » yxibow, posted by JadeKelly on November 2, 2008, at 16:54:16
I have been with my pdoc for 17yrs, I am afraid to go to someone new. Just telling the stories all over, all of that seems so daunting. On the other hand sometimes I think a new perspective is often good, but I am too chicken to start fresh with someone and I trust this man and trusting is hard.
I take now .25 topamax at night before bed
1mg xanax bedtime
* vicoden 7.5 750's 4x a day max as needed for pain (trigeminal neuralgia)
and a lot of vitaminsI just stopped wellbutrin 100 1x am
prozac 20 1x amI saw a regular doc and had my b-12 levels tested, pernanicous(sp?) anemia was fine, lymes, lypids, cholesterol, liver function, ect all normal
Someone mentioned white blood cell count and viral loads. White blood cells I want to have done I read recently that topamax can affect your white count, I will call and check on thatand viral loads? they test how much of the herpes simplex virus is in your system? I never heard of that before!
That I would like to know as well. I hope the Dr will order the tests for me. I see the psych tomorrow and will ask him if he will order those tests.
Also I saw mention of thyroid (hypo) I wonder about that as well I was tested I believe but I think that my symptoms fit hypothyroidism so well, low body temp 97 consistantly. I am wondering if the levels are just so borderline they did not raise a red flag for the Dr but could be subclinical..
I started taking virgin coconut oil yesterday and took about 5 tablespoons full. I woke up in the middle of the night so sick to my stomach! blech!I took only one tablespoonful today.
I am willing to try almost anything at this point.
Thank you all for your answers and support. It is hard talking to healthy non-depressed people about chronic problems. They just cannot possibly understand what it is that we feel.Also for anyone who has come off of an SSRI I feel so emotional lately, I have cried more in the past 2 weeks then in the past 3 or more years. I don't know if this is good or bad. Am I getting feelings out or having a breakdown.
1 more thing has anyone been on tegretol?? I am thinking about asking the doc to switch me to that I heard it works for trigeminal neuralgia and also as a mood stabilizer 2 birds one stone.
any info would be appreciated!
Posted by bleauberry on November 2, 2008, at 19:34:53
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
Can I post a few comments? Just opinions actually.
I am convinced meds can change immune function. How, why, or which ones, I don't know. I feel genetic susceptibility and heavy metal toxicity can both play into it.
Sick and tired all the time. Like poisoned? You could indeed be having a hard time fighting off infections, and you are floating in a fog of their toxins, which happen to have a high affinity for the opioid receptors, causing a very fogged tired feeling. I've heard that large doses of molybdenum and vitamin B3 can mop up the mess, but I don't know enough about it.
Lyme disease blood tests are not conclusive. Lyme is a sneaky one that can remain undetectable in blood once it finds a permament home inside of cells disguised as part of the cell itself. People have treated it blindly, regardless of tests, but that involves as best I understand a protocol that is specific with several antibiotics for up to a year.
With all the meds, and still not happy or productive. Well then I humbly agree with you, that the current meds don't make much sense to be taking. But don't quit them abruptly or with haste. Do it very slowly and methodically, which it sounds like you are doing.
Pdoc says the cold sores are from pain and stress. Well, that just further strengthens your intuition that the current meds are worthless. If you are on a pharmacy of meds and still have stress, doesn't say much for the choice of those meds, does it?
The herbs you are on are popular. Despite their claims of helping you, there really is no scientific evidence to back it up. Both reishi and astagalus impact the adrenal/cortisol axis, which is tied directly to immunity. Whether the herbs are impacting it in a good way for you or a bad way for, no way to know. I tried both those herbs because the literature looked so awesome. The problem was that in the real world they made me feel very depressed.
Things to do right now:
Lower or eliminate sugars.
Lower or eliminate caffeine.
Drink lots of purified water.
Eat heavily on raw and partially cooked veggies.
Eat heavily on proteins.
Try avoiding gluten (wheat, barley, oats, barley malt) for a couple weeks and see if you feel different.
Try avoiding all dairy products for a couple weeks to see if you feel any different.
Supplement with low to moderate doses of buffered vitamin c, 400units of E, and 1000units of D3, and a little bit of selenium and zinc.
Take a strong probiotic (30billion to 50billion) per day.For pharmaceuticals, the newest greatest thing I've seen for immunity issues is low dose naltrexone at lowdosenaltrexone.org. Might want to check that out.
Posted by sunshine25 on November 2, 2008, at 19:58:10
In reply to Re: medication lowering immunity?, posted by bleauberry on November 2, 2008, at 19:34:53
*"Drink lots of purified water."
I use a pur does that do the trick? I have heard some people say yes and others say no.
**"Try avoiding gluten (wheat, barley, oats, barley malt) for a couple weeks and see if you feel different."
**"Try avoiding all dairy products for a couple weeks to see if you feel any different."these are both good ideas, I was thinking about going on an elimination diet and I looked into NAET but it was expensive and seemed a little hard to believe.
Everything has gluten in it I know someone with celiacs disease and I know how hard it is for her to find food without it, making an effort to try and see if a gluten free diet would help me would be hard but I am willing to make the effort. Right now I am really just ready to try any suggestion.
I am going to really make an effort to try and get more protien in my diet as well, I am not a big meat eater but I will include protien at every meal for a while and try and see if that helps. chicken fish ect.
I hate to give up my morning coffee I am down to one cup but switching it to green tea would be easy I have it and it is good for you!
I am a loyal iherb customer and will take your supplement advice.
Probiotics is something I have been thinking about but I was not sure which one to get or the dosage range. It is daunting looking at all those choices!
I wonder about candidia I have many of the symptoms of that as well.I do feel poisoned!
I feel like something is sucking the life out of me.I wonder about lymes but would hate to be on antibiotics for so long and then not of even had it.......
I thought for so long that this feeling awful was all in my head, when you are a psych patient you start to doubt yourself I think, but this is real it is not mental.
Posted by yxibow on November 2, 2008, at 23:27:57
In reply to Re: Yxibow, posted by sunshine25 on November 2, 2008, at 19:15:31
Hmm... maybe I got the terminology of viral load testing off, because it is mainly targeting HIV and a few other ones -- I'll have to remember what the testing I had was -- it may have been a general WBC test now that I think which among other things generally can indicate viruses present, and combined with your history that your GP has may indicate other conditions.
WBC counts really have to be interpreted by your GP because the ranges don't necessarily mean one thing or another specifically.
As for a lyme titer -- lyme is somewhat rare but certainly present -- I'm not denying people who have the disorder, its painful to go through months of antibiotic treatment which may only put it in remission -- yes I did finally convince my doctor to give me one since I had like over a dozen other tests searching for a cause for the mystery that still ails me (an anxiety disorder for sure but with multiple angles and complaints, an "orphan disorder"). They're not the most accurate and there is a potential for a false positive -- I had the first one and it was negative, then you have to get another one.It was all about that I remember that I was bitten by a tick hiking in a park, but there really isn't as much lyme activity out in the southwestern area -- there are other things, which I had been tested for like valley fever, etc. The highest concentration is I believe in the New England states.
-- Jay
Posted by JadeKelly on November 3, 2008, at 13:29:58
In reply to Re: Yxibow » sunshine25, posted by yxibow on November 2, 2008, at 23:27:57
Hi Jay,
Sounds like your pretty experienced in the testing department, which I am not. Only endo. Said low thyroid but treatment made me really irritable.
My question: Do you know, or can you advise good search place for list of comprehensive test(s), that could explain things like anxiety and immune disorders in Sunshine's case, extreme fatigue, atyp depression, in my case, anything else affecting mood, etc.? Don't need Pdoc diagnosis, looking for actual results from blood work, etc. I have access to great hospital, but hate to have to go from specialist to specialist. Internist will probably stop at Physical, or refer to endo.
Any ideas?
Posted by JadeKelly on November 3, 2008, at 14:09:09
In reply to Re: medication lowering immunity?, posted by sunshine25 on November 2, 2008, at 19:58:10
Hi Sunshine, couple thoughts re: your last post,
Don't know if you'd be interested in this, but I know someone who joined "food addicts anonomous" an off shoot of the AA program. I don't have a food/weight problem, and maybe you don't either. But I went to a meeting with my friend because a lot of these people are depressed and the experienced ones get up and tell their before/after stories. It was amazing what a change in diet can do for some. My friend lost tons of weight (you don't have to) and the diet seems to REALLY improve her mood. She swears by it. Maybe you could find a local chapter and go once. If its not for you, you could at least p/u the diet. Just a thought. Oh, and its free. You don't have to talk either.
Also, my thyroid was same as yours bottom of the normal range, my temp never goes over 97. Maybe try small replacement med? My pdoc gave me "cytomel". Hear it helps a lot of people. Couldn't hurt to try.
>
> I do feel poisoned!
> I feel like something is sucking the life out of me.Honestly, get all the tests done. It may be a pain, but at least you'd have some piece of mind.
My Pdoc is loathe to do much testing outside of thyroid.Again, not saying drop your Pdoc (that would be mistake!) But if he won't order tests your asking for, or is not qualified to interpret them TO YOU, I'd make appts with another doc(s). If I get answer from Yxibow, maybe we'll both have a better idea how to get comprehesive tests done with minimal effort, hah! Don't know about you, but I'm tired! I may start post on med board re: tests worth getting. There are some REALLY smart people on here :)
Jade
Posted by Phillipa on November 3, 2008, at 18:34:44
In reply to Re: Diet, thyroid, tests » sunshine25, posted by JadeKelly on November 3, 2008, at 14:09:09
Tested positive for lymes for many years have had rocephin through pic line and then about three years of three months on and three months off biaxin xl. Best med for lymes orally is doxycycline but even sunburned through car windows. So was switched. Still test positive always will it's worth a google as I've also had two spinal taps and MRI for it. The spirochetes as the organisims are called hide out in body tissues and if something triggers them they come out and cause problems. Intersting note is the Test still comes back postitive for me and always get notified by health dept. No one know where or when I got it as lived in CT till about 20 years ago and then moved to VA Beach and now NC. The disese is present all over the world in different variants. A new strain was found last year in NC. FDA is against treating chronic lymes as so expensive and also long antibiotic treatment are expensive and can also cause damage. If you get the thyroid tested you really need an endo who will test for autoimmune antibodies and every imaginable test affecting throid. Even Pituitary does. So I know how inconvenient it is but necessary to rule out all physical posibilities. Lots of people test false negative but not false positive for lymes. Seriously google it. Love Phillipa
Posted by sunshine25 on November 3, 2008, at 20:02:31
In reply to Re: Diet, thyroid, tests, posted by Phillipa on November 3, 2008, at 18:34:44
I just googled lymes disease and it seems like there is so much information about people who have tested negative but still think/feel that they have lymes.
I had the western blot test which is pretty accurate, so I really don't know.
I live in the hudson river valley and lymes is very prevalent in this area. My dog has lymes as well, she has been on 2 rounds of antibiotics in the past year.
I don't know if this is something I should continue to think about or if I should just let it go, I honestly would not want to take treatments without knowing for sure that I was treating the right thing.
"Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria."
my immune system seems messed up I wonder if that could be possible
I have been on doxycycline for a about 6 months for acne I stopped about a month ago.
Reasons Why A Seronegative Test Result Might OccurTom Grier, Lyme Alliance
1. Recent infection before immune response
2. Antibodies are in immune complexes
3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)
4. Spirochete are deep in host tissue
5. Blebs in body fluid, no whole organisms needed for PCR
6. No spirochetes in body fluid on day of test
7. Genetic heterogeneity (300 strains in U.S.)
8. Antigenic variability
9. Surface antigens change with temperature
10. Utilization of host protease instead of microbial protease
11. Spirochete in dormancy phase
12. Recent antibiotic treatment
13. Recent anti-inflammatory treatment
14. Concomitant infection with babesia may cause immunosuppression
15. Other causes of immunosuppression
16. Lab with poor technical capability for Lyme disease
17. Lab tests not standardized for late stage disease
18. Lab tests labeled "for investigational use only"
19. CDC criteria is epidemiological, not a diagnostic criteria
Posted by JadeKelly on November 3, 2008, at 20:26:59
In reply to Re: Diet, thyroid, tests, posted by sunshine25 on November 3, 2008, at 20:02:31
Wow, its amazing anyone tests positive after reading that list!
How about get other tests done first like for your immune system (I have no idea what those tests would be, trying to find out), then go back and have the Lyme test done again. If your other tests turn out fine, you may feel differently about treating it just in case. Did you have the bulls eye rash, and other Lyme symtoms?
Posted by bleauberry on November 3, 2008, at 20:29:13
In reply to Re: medication lowering immunity?, posted by sunshine25 on November 2, 2008, at 19:58:10
Hi, I just wanted to followup on the gluten thing. It really isn't that hard. It took me a few months, but really it can be done instantly if someone shows you how.
Health food stores, herb stores, etc, sell gluten free products. Everything like pasta, oreo cookies, cereals, bread, donuts, pizza, enchiladas, on and on.
The local grocery store has a lot too. Dinty Moore beef stew says on the can gluten free. Amy's frozen enchilada meal. General Mills Rice Chex.
Obviously if it is made from wheat, forget it. If it has barley or oats, forget it. Actually oats itself is ok, but most oats are contaminated from wheat due to being grown in the same field. There is a gluten free oats sold by Bobs Red Mill brand.
Whole Foods Market has a whole gluten free section.
I make pancakes with Bobs Red Mill all purpose gluten free flour, which is a mix of rice flour, corn flour, bean flour, tapioca flour, and a couple others.
Most gluten free pastas are made from rice. They are ok, but kind of slimy. A better one is made with quinoa and corn, which looks, tastes, and feels like real spaguetti. Whole Foods has it.
Gluten Free Pantry brand has a bread mix you can bake, called Old Fashioned Bread, and it is awesome. Tastes like grandmas homemade.
If the ingredient list shows "barley malt", forget it. That rules out a lot of cereals that would otherwise seem safe enough.
Hersheys regular chocolate is gluten free but their dark chocolate is not. Weird. Something in their "natural and artificial flavors". Just the opposite with milky way...milky way has gluten but the milky way dark doesn't. Dove is good. Whole Foods sells a brand of chocolate chips that are completely allergen free...no dairy, no gluten, no eggs, and they taste extremely good.
The biggest draw back is the cost. Gluten free stuff generally costs more, except maybe for common things like hersheys, dinty moore beef stew, gm rice chex, etc. And the labor to make your bread. The premade ones suck, though the Whole Foods house brand frozen gluten free sandwich bread is actually pretty good.
Read all labels. If it says wheat, barley, oats, or barley malt, eat something else. If it says "natural and artificial flavors", well, that's kind of iffy, you just don't know. Skip it if you can.
Two weeks of that really isn't a big challenge at all. I do it every day of my life and it isn't a big deal. Once in a while I even splurge and have a Big Mac or a slice of wheatflour pizza, though I pay the price with a hungover feeling the next day.
I skipped all dairy and anything that had dairy in it for a few weeks. I couldn't tell any difference at all. So at least now I know I can enjoy whatever milk, cheese, chocolate, or whatever.
Gluten, different story. It is followed up with a hungover poinsoned kind of feeling in about 24 hours.
Eggs are also one of the top allergens, but that is easy enough to skip and test.
Posted by Phillipa on November 3, 2008, at 20:42:33
In reply to Re: Diet, thyroid, tests » sunshine25, posted by JadeKelly on November 3, 2008, at 20:26:59
first test would be ANA which is auto nuclear antibodies. Now it's elevated in some normal folks also but it would be the degree of the rise in numbers and symtoms. Another google autoimmune diseases. Usually well in my case since no lyme literate doctor was in the area an infection control specialist and a rheumatologist worked together in the hospital setting was in a full month. When first tested ANA was 1:2800. Extremly high. Last one I had was 1:40 not bad. I think new standard in below 1:20 is okay. Each time the number doubles so from 20 to 40 is one step up another google ANA test results what do they mean. Love Phillipa And you do live in a high risk area. Animals get lymes like your dog and can have neurological symtoms, arthritis etc. And I never had a bulls eye rash. You don't need that it is just something that some do have. And the deer tick is not the big ones it is so small that you need glasses to see. If a tic gets on you you can put in alchohol and take it to the health dept and they will test it to see if it's disease carrying. I probably never knew I even had the tic that transmitted lymes to me. Phillipa
Posted by sunshine25 on November 3, 2008, at 21:08:44
In reply to Re: medication lowering immunity? » sunshine25, posted by bleauberry on November 3, 2008, at 20:29:13
Food sensitvity does have a lot of the same symptoms as lymes.
Signs and Symptoms of Food Sensitivity
fatigue (yes)
nasal congestion (no)
dark circles under the eyes (not really maybe a little)
headache (yes)
muscle aches (yes)
irritability (YES!)
abdominal pain (no)
hyperactivity (I WISH!)
attention deficits (yes)
memory loss (yes)There is a food elimination diet where you eliminate all triggery type foods and then introduce certain ones to see if they produce symptoms.
I did eat very healthy today and skip my morning coffee which left me with a stronger headache then my usual residual headache but I figure if I am feeling like crap what difference does it make.
I went and ordered some rainbow colsertum plus probiotics selinium and vit c from iherb and got some organic kefir from the grocery store.
Also some green's juice loaded with spirulina and chorella.
I am not overweight but I am prone to binges so I could relate to the people at the AA style food meeting. It has been something I have always struggled with. Topamax def. keeps the weight off the 10 or so extra binge lbs I carried around on me fell right off when I started that med. Now that I am going off of it I need to watch out because I am not in my teens anymore and I am sure the old metabolism is not what it used to be!
Posted by tarheelex on November 4, 2008, at 12:46:50
In reply to medication lowering immunity?, posted by sunshine25 on November 1, 2008, at 23:41:25
Sunshine
The meds are not lowering your immunity, promise. I too suffer from cold sore outbreaks with antidepressants. Otherwise my immunity is fine. I am convinced that the drugs trigger the nerves where the herpes virus lives (the virus that causes your cold sores). The drugs are up/down regulating neurotransmitters - anything else that resides there would seem to be caught up in the action. Docs told me too it was stress or whatever other reason. Don't believe them, it is the meds.
The good news is that there is a quick fix. Take L-Lysine, 4 tabs of 500mg per day during an outbreak and 2 tabs per day as a preventative. If that doesn't work I can tell you that St Johns Wort, SAM-e, and the old-school tricyclics were much more manageable in terms of this side effect.
Good luck
Posted by JadeKelly on November 4, 2008, at 17:44:22
In reply to Re: medication lowering immunity - no and yes, posted by tarheelex on November 4, 2008, at 12:46:50
Hi sunshine,
Maybe you are getting more posts than you need. But information is the key. I've been doing some research: impaired immunity CAN cause mouth sores(ulcers), so can anxiety, there are drugs out there that DO supress immune function... are you on any, I don't know. In addition, your personal or physical reaction to a drug could cause immune suppression.
You have MANY other symptoms that have yet to be explained.
My point is, I hope you don't drop the ball on getting tested for all things that could be causing your symtoms. Seems like if you can find the right Doc., he/she will be able to help you explore your list of ailments and get the appropriate testing done.
There were so many things I read about that could be causing your symptoms. Get some piece of mind from some appropriate testing, sounds like your off to a pro-active start with the diet. If testing shows nothing, ONE LESS WORRY and treat with diet, supplements, exercise, what ever works
for you.Again, let us know how you do! Jade
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