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Old 04-06-2005, 12:06 AM   #1
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lodoka HB User
Wink If anyone needs help, I am here.

If anyone requires a through reading of their complex immune system test or CBC count or anything relating to CFIDS or CFS or Fibro,please let me know.

I been dealing with this stuff for a while and have read so much stuff and been with many immunologist doctors who are doing research in CFIDS..

What I recommend everyone should do is get a Natural Killer cell test w/ Lympocyte panel (Natural killer test includes in that) . Also get a CMV and HHV 6 test done..

Most Fatigue w/ CFIDS is cause by lack of Natural killer cell and our immune system shifing Immunity with T1 and T2.

Normal people have High active T1 and Low active T2.

CFIDS or CFS patients are high active T2 and low active T1.

IT means, CFIDS patient do not always get sick with common cold, but they get allergic to lot of stuff.

Please ask your doctors for Entire Lympocyte Panel ... Not All regular MD will order the test because it requires a immunologist to read it and understand the test..

If you like, you can post your results here and I can tell them for you.

Also,

Garlic works much better for CFIDS patient... Take around 1000 - 2000 mg of Garlic Tablet and 1000 -200 mg of Vitaminc C.

Do it everyday for 60 days and you will see the difference.

Also, read more on Dr. Cheny, who does extensive research on CFIDs.

 
Old 04-08-2005, 08:19 PM   #2
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Re: If anyone needs help, I am here.

Hi.

I was dx'd with FM in 2002 and recently was told by a rheumy and my GP that I have CFS. I am wanting to have intense blood work done, like the Epstien Barr, CMV and the other's you mention. But the only test I could get out of the rheumy was for Hepetitis! I think that there is something underlying, that is causing me to be sick. I know what FM feels like, but for the past six or so months I have been sick. Fever off and on, I usually run low, muscle pain (not like the FM pain), joint pain, swollen and painful glands in my neck but especially my underarms. I am so weak. I can barely lift a gallon jug of milk. I try and exercise, but then I feel sick. I feel totally different than I did when I just had the FM. I also have some pretty severe back issues going on, and hopefully will have surgery this year. I also have bursistis in my right hip pretty bad. But for the past few months, I simply canNOT get out of the house. I have canceled so many dentist appts. I need 3 crowns cuz my teeth are cracked from clenching, but I have MVP and need all those anitibiotics so I don't think it's a good idea to be poking around my mouth when I'm running a fever. Oh and I have pain when I pee and it smells very strong. It's clear, I drink a lot of water.

So I want to know HOW I get these tests run? I would pay for them myself if someone would just tell me how to get them done! I've left messages for my Rheumy, she doesn't really like me, I insisited she have Chostochondritis added to my records so I could put it in my SSD file and she got mad at me, and ever since, she won't return my calls. I looked on the NET and there is a place in TX that will send you a test, 3 viles, and it has instrucitons on what is needed, and you get the blood drawn and overnight it to them and they will run all those intense immune system tests that can go along with CFS and CFIDS. They too, believe that CFS is caused by something that is underlying in your system. But I can't get anyone to order the tests for me! It's my body, and why should any doctor care what tests I want done, is how I feel. It won't hurt, and if all comes back negative, well fine, but why can't I just check? I called my rheumies office again today, and won't get a call supposedly until Monday, but if I don't hear from her, I'll call my GP. And if HE won't order the tests, I guess I'll ask my Pain Management doc, which makes no sense, but I think he just may refer me to a lab for blood tests if I ask him too, but maybe not. All I have left to ask if my phsycotherapist! She's just a clinician, who would have to set me up with the Psyc doc, and I don't know why HE would order blood tests for me! But hey, I'll try any doc!

So, can you tell me how to get my doc to run these tests?

I appreciate any advice, I am so SICK of feeling this way, and wondering if there is something that may be going on that can be treated! I know it won't cure me, but at least I would know what caused all this. I'm about ready to stick myself and pull my own blood! LOL

Thanks for any help.


tk

 
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Old 04-09-2005, 10:01 AM   #3
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deejavu HB User
Re: If anyone needs help, I am here.

Hi Tk,

After reading your post, many of your symptoms match mine, the on and off fevers, joint paint, weakness, etc.

I was diagnosed with CFS many years ago and then I found out that I really have Lyme Disease. Were you tested for Lyme?

I suggest reading the posts under Lyme as many CFS symptoms mimic Lyme. It is also important that if you do want to get tested for Lyme, that your bloodwork goes to the right laboratory as many of these Labs do not use 100% pure Lyme Antigen resulting in a Negative Diagnosis.

Good luck to you,
Deejavu

 
Old 04-09-2005, 12:10 PM   #4
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CFD 333 HB User
Re: If anyone needs help, I am here.

Lodoka, I agree totally with the research that presents a major Th1/Th2 shift in patients with Chronic Fatigue Syndrome. When I look back, about 8-9 years ago I started developing terrible allergies to just about everything under the sun when previously I didn't have any problems. I remember at the time being under a lot of stress and my anxiety was getting out of control...I was in college and having a difficult time keeping up. I was ok for a long time after that until I was finally hit with a flu that I never recovered from about a year and a half ago. Since that time I've noticed that I never again had a single cold or flu although my allergies are worse than ever and I keep getting sinus infections which are most likely bacterial in origin.

My other major problem besides the usual fatigue, post-exertional malaise, and anxiety is my inability to tolerate medications like I once did. My bodies ability to metabolize them, I guess, is impaired. I heard that this could be due to free radical damage to the liver caused by an overactive immune system...infact, I beleive the current thinking by researchers such as Kenny De Meirleir is that immune system deregulation by the RNase L pathway could be responsible for nearly ALL the symptoms of Chronic Fatigue Syndrome. The most specific treatment for this in the works is the drug Ampligen which is still awaiting FDA approval. However, he also discussed certain other currently available medications that may also help like beta lactam antibiotics, calcium channel blockers, and elastase inhibitors...have you seen or heard about any of this research? What treatments do you know of that may be helpful besides Garlic or Vitamin C? Lets see if we can work together on this...

 
Old 04-09-2005, 12:48 PM   #5
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tkgoodspirit HB Usertkgoodspirit HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by deejavu
Hi Tk,

After reading your post, many of your symptoms match mine, the on and off fevers, joint paint, weakness, etc.

I was diagnosed with CFS many years ago and then I found out that I really have Lyme Disease. Were you tested for Lyme?

I suggest reading the posts under Lyme as many CFS symptoms mimic Lyme. It is also important that if you do want to get tested for Lyme, that your bloodwork goes to the right laboratory as many of these Labs do not use 100% pure Lyme Antigen resulting in a Negative Diagnosis.

Good luck to you,
Deejavu
Hey again!

Actually, last year, I had called my rheumy and she said she would order a Western Blot for Lyme, but we never got around to it for some reason. I dunno, forgot or something, but I can't get the woman to respond to any of my calls now, ever since that incident where I wanted her to add the costo to my records. She is ignoring me basically. I even called and left her a message to refer me to one of the other rheumies there in the clinic. NADA So I begged my PCP to take over treating my FM, and he said as long as it remains simple. Well, he suggested the CFS and maybe if I call him, he can order the WB for me without me going through my rheumy. I don't know what to do about this rheumy, she's okay, as far as docs go, but I hate doctor shopping. I DID see another rheumy, his bedside manner lacked enthusiasm to say the least, and he wouldn't order any tests execpt the Hepetitis. What do you have to do for these docs? Fall to the floor with a pen jabbed at your writst threatening to open your veins so that they HAVE to take your blood! LOL This other rheumy also asked if I'd ever taken this or that med, but didn't prescribe me any, though he scheduled me for a followup 6 month appt. Wierd. He believes FM CFS and Myofacsial Pain Syndrome all roll together, so no wonder he wouldn't order any blood tests that may show something wrong with the immune system. Oh and another thing, I have recurring oral herpes. Now isn't THAT some sort of compromise in your immune system? I get sores in the corner of my mouth (fever blister, cold sores whatever they are called!) at least once a month, and sometimes inside my mouth. My PCP gave me samples of Zoverax? cream, but it dried my skin out so badly, I was flaking away! So he said I could take the Valtrax but would have to stay on it forEVER to help stop the recurrances. So how did I get the oral herpes. Sounds attractive doesn't it? Just what you want to tell folks. "Hey there, nice to meet you. Oh, those crusties in the corner of my mouth? That's just oral herpes."! AAAAAAHHHHHH! LOL My husband is like, "can I get that?" I said only if you kiss me on the mouth when the sores are there! LOL So he's been kissing me on the forehead lately! I'm 46! Since I get the outbreak at least once a month and it takes a couple weeks for them to clear, no smoochies for me!

Well, I hope SOMEONE comes up with some kind of blood test that will confirm CFS and FM, so we aren't like little guinea pigs. I know that there is a test that will confirm FM. It involves a spinal tap though, and most docs won't do that. It's a test for Substance P which, (now I can't remember) is either low in FM patients or high. I think it is very low, which is a common denominator for dx'ing FM. But who wants to have a spinal tap. It is a substance found in our spinal fluid. You'd wonder if they couldn't harvest it some other way.

Anyhoo, thanks again for your reply, and I hope I can get somebody to do some blood work on me. My best hope is my PCP, he's pretty agreeable with most things I ask of him. I've had him for 8 years, bless his heart, he probably agrees to things just to keep me out of his office! LOL

Have a good weekend!
tk

 
Old 04-09-2005, 04:07 PM   #6
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terrienne HB User
Re: If anyone needs help, I am here.

Lodoko..........................., HELLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLLP !
WHERE ARE YOU ?

GG

 
Old 04-09-2005, 04:09 PM   #7
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terrienne HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by lodoka
If anyone requires a through reading of their complex immune system test or CBC count or anything relating to CFIDS or CFS or Fibro,please let me know.

I been dealing with this stuff for a while and have read so much stuff and been with many immunologist doctors who are doing research in CFIDS..

What I recommend everyone should do is get a Natural Killer cell test w/ Lympocyte panel (Natural killer test includes in that) . Also get a CMV and HHV 6 test done..

Most Fatigue w/ CFIDS is cause by lack of Natural killer cell and our immune system shifing Immunity with T1 and T2.

Normal people have High active T1 and Low active T2.

CFIDS or CFS patients are high active T2 and low active T1.

IT means, CFIDS patient do not always get sick with common cold, but they get allergic to lot of stuff.

Please ask your doctors for Entire Lympocyte Panel ... Not All regular MD will order the test because it requires a immunologist to read it and understand the test..

If you like, you can post your results here and I can tell them for you.

Also,

Garlic works much better for CFIDS patient... Take around 1000 - 2000 mg of Garlic Tablet and 1000 -200 mg of Vitaminc C.

Do it everyday for 60 days and you will see the difference.

Also, read more on Dr. Cheny, who does extensive research on CFIDs.
Gee Gee.........., Hellllllllllllllllllllllllllllllllllllll llp !
WHERE ARE YOU ?
THOUGHT YOU WOULD BE AROUND......,
GG

 
Old 04-09-2005, 05:49 PM   #8
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deejavu HB User
Re: If anyone needs help, I am here.

Hello again Tk,

Sounds like your Rheumy doctor is not being very helpful. I would go to your PCP and ask him/her to recommend a Lyme Literate Doctor.

As far as the oral herpes, I am really sorry that you have that. All I can say is when a person's immune system is not working properly, the herpes virus that can lay dormant in your system will keep reappearing.

Lyme Disease attacks the Immune System causing a person to become very weak and not being able to fight normal bacteria and viruses.

Did you know that Lyme Disease is the 2nd fastest growing virus in the United States after AIDS?

Once again, your symptoms sound like mine and there are NOT any bloodtests to diagnose CFS. I have researched CFS for over 6 years now, and all I found out is that there is no Medical Proof to back up this diagnosis and/or disease.

Because so many doctors have no knowledge of Lyme Disease, they tell their patients (including myself) that they have CFS because they don't know what else to tell them.

I really suggest asking your PCP to recommend a Lyme Literate Doctor and have your blood sent to Igenix Labs in California. I live on Long Island and I saw over 100 doctors who knew nothing about Lyme Disease.

Finally I found a doctor who sent my blood to California and I tested positive for 2 types of Lyme and I am still trying to get better as I have a late form of Lyme.

Good luck to you and keep us updated,
Deejavu

 
Old 04-11-2005, 12:09 AM   #9
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lodoka HB User
Re: If anyone needs help, I am here.

Lets take this one at a time. Oral herpes I have it and so does everyone in the world have it. The best thing to do to prevent any oral outbreak is do this:

Buy some Super Lysine Cream and buy some 1000 mg of Lysine and Vitamin C. When ever you feel little crazy feeling or burning feeling around your mouth, I want you to place 1 tablet of lysine 1000 mg in the morning and 1 tablet at night, and where ever you feel the itchy , put some lysine cream on.. 100 % your OB will not occure or it will be lesser or not that long.

Dont take antibiotics I dont like them and they suck at what they do, plus they cost to much.

If you already have ob than take about 3000 Mg of Lysine and 2000 mg of vitamin C.. Your ob should go away quick..

Do not eat chocolate or anything that has L - Argine (sp ? ) in it, it helps hereps virus.

Read my next post regarding your dum rhumy and testing.

 
Old 04-11-2005, 12:22 AM   #10
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lodoka HB User
Re: If anyone needs help, I am here.

tkgoodspirit - relax..Your rhumy sucks. Dont worry they are not the only , my rhumy sucks to so I stop going to her. Rhumatologist are not really good when it comes to immunologist complex test. Yes they deal with genetic disorder etc... but they only think in the box not out of it.

My deal was figure out by my Nautropathic immunologist specialist, the doc I visited knew what was wrong with me in first visit. If you have money go see a nautrophatic doc, insurance will not pay for them.

Since your PCP is willing to do everything for you . Ask him if he can provide you with following test:

CBC w/ Differential.
Human Herpes 6 & 8 IGG/IGM Elisa .
CMV IGG / IGM
EBV Titer test
Liver Profile.

Do you have any MRI or anything done recently ? If not , get one done.

MRI should tell us if you have any lession or anything that may cause you lose of function with muscles or anything like that.

DO NOT Excerise. Let me repeat my self, DONT.. Why ? Excersie helps CMV and other herpes virus , because CMV also lays in your heart, ever get that crazy feeling in the chest ??? or Abnormal heart beat ?? Its all cause by these herpes virus. Dont think so ?
Ask your PCP to give you 24 hours Holter Heart Monitor, 99 % it will show abnormal heart beats.

Dont excerise, becuase it will make you sick after words becuase your T2 are activated and causing your immune system to react more , goal is to prevent hyper immune system.

Yea besides Garlic you can take all kinds of stuff.

Listed below are some stuff I take.

Garlic - 2000 mg
Vitamin C - 2000 mg a day
CM4
Tymus Gland Support
Complete Mineral and Supplement
Tanalbites (sp ?) - Antifungal
Omega 3 - Make sure get one with DHA or EPA .. something like that..
B- Complex.

Dont take Valtrex, if you have HHV 6, does not help and will waste your money.

Take CM 4 or Transfactor to attack CMV or HHV 6, works well.

Milk Thistle is good as well.

I have CFIDS as well and I take everything I can but sometimes their are days I cant even move.


Sorry to say folks, we are just us, their is no one for us and no one will really understand CFIDS people.

I am 21 years old and I developed CFIDS after sexual encounter from this female.. I contracted HHV 6, CMV, Mycoplasma, Herpes 1 & 2, HPV ... All in my First Time SExual encounter in my life.

I only met 1 person, and gotta it all.. So hopefully, we can all get through this.

Please try some stuff I have told you, I have tried every supplement out their and I test what works and what doesnt.

If you some you take, please share it with me.

Remember when you take this kind of stuff , it takes your body 8 weeks - 13 for it to absorb and adapt to it.

TkGoodSpirit,- post your test results once you get it.

 
Old 04-11-2005, 03:23 AM   #11
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kiya HB User
Re: If anyone needs help, I am here.

Hmm, I'm sorry but I still think you're wrong advocating absolutely no exercise for everyone who's posting on this forum. CFS is a catch-all, it's not one illness, it's several. It would be like recommending Metformin for everyone who has a sweet tooth.

 
Old 04-11-2005, 08:25 AM   #12
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tkgoodspirit HB Usertkgoodspirit HB User
Re: If anyone needs help, I am here.

lodoka,

Thanks for all your info! My rheumy sucks for sure! LOL I called again this morning and asked about the tests. Also asked about having the Western Blot done again for Lymes, which she agreed to last year, but we never got it done.

I believe in homeopathic amino acids and supplements. I have a sticky post on the Fibromyalgia Board (first thread) if anyone want's to check it out.

I take Lysine only the T-Lysine. Most of what you wrote there I am familiar with except for the CM4. What is that?

No I can't afford a natural medicine doctor/treatment. There is one near me, but we are filing bankruptcy because of all our medical bills and jobs being lost, yada yada yada.

I am also concerned about having these tests done because I will be having back surgery done very soon, before I am totally unable to walk. Oh and about the heart palps. I've had them for years, since I was in my 20's. One doc told me that when one of the valves is opening it stays open just long enough to "regurgetate" blood, so I have to take a bunch of anti-biotics before I have my teeth worked on. As far as the "palps" go, I get them often. Feels like your heart is coming through your chest wall. Its wierd, I've had them last for seconds and could actually see my chest moving when I was laying down! LOL I get them more often when I am feeling sick.

I have spoken with a friend of mine who is a nurse and her mom has FM, also said those tests are good to get done, just even for general knowledge of your own body. It's kinda like "now I know". Which is all I want. I can tell, SOMETHING is not right.

Oh and as for the exercise, it did help me when I was first dx'd with FM and I have read other posters on the FM board where exercise helped a lot with their pain and fatigue, however, I DO feel "sickly" after I exercise or even just work around the house or yard in an exerting way, I WILL feel sickly the next few days,which is new to me, and so frustrating. I hate it. I hate being like this.


So, this is my goal this week, to get SOMEone to approve those tests for me, to talk to my PM doc about refering me to a NS for backsurgery. Which is where I'll get my MRI done. I haven't had one done for a couple years. Last one was on my neck. My lower back MRI hasn't been redone since 2002. My PCP also recommended one be done on my right hip where I am showing signs of bursitis. So when they order the lower back MRI, I'm going to see if they will include my right hip.

Anyway, I will post my results here when I get them. But you know, anytime I have ever had testing done through my rheumy she just read them to me, I never ever saw them. Which I guess isn't right, shouldn't those be yours, or at least shouldn't they give you a copy of them, incase you see another doc? Some of these docs make me so mad. They act like that medical record is THEIRS not YOURS.

Anyhoo, thanks for the info.
tk

 
Old 04-11-2005, 10:47 AM   #13
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lodoka HB User
Re: If anyone needs help, I am here.

Hey, good to see you are holding in their.. Dont worry, I been with over 25 different doctors including infection disease etc... Let me tell you something, they all suck. They only know what the medical book has thought them, they dont think out of the box.

Yes, please get the MRI done, have you ever had a spinal tap done ? I believe you are saying you have msucle problem, if you do, I think you should ask your doctor for a spinal tap test.

Yea, excerise will help with pain for Fibro people only if they do swimming. I guess it is to try out what form of excerise works per individual.

For your test results, you can always ask for a copy of your result, it is against a law to see a copy of your result. If the Rhumy refuses to give the result, take her to COURT. You will win big buck.

Yes, the palpitiation is kind of a complex thing. I get them all the time, but is it normal ? Who knows, I been with so many docs and they just assume things.

Member what I told you about forms of virus in your heart ? Well with many CFIDS patient, we do have abnormal heart beats because of many things...Ask your doc to do holter heart monitor.

NAS is a form of test a pulmonary doc can do to see if their are any virus in your heart.

To be honest, it is pointless to visit doctors after doctors becase many lack knowledge when it comes to CFIDS.

I get pain all the time, I stop going to doctors because I am wasting hell load of money with no income.

Remember I am young compare to many of you and I have to go through this crape...

Well, I guess thinking positive doesnt hurt.

If your doctor refuses to do any test I told you about, than you need to change your doctor becuase what doctor will refuse to do a test.

If he lacks knowledge in the test I told you about, I wont be suprise if he did lack knowledge, then get a new Doctor who does know about many form of testing.

Let me know what happens.

 
Old 04-11-2005, 11:08 AM   #14
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deejavu HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by lodoka
Lets take this one at a time. Oral herpes I have it and so does everyone in the world have it. The best thing to do to prevent any oral outbreak is do this:

Buy some Super Lysine Cream and buy some 1000 mg of Lysine and Vitamin C. When ever you feel little crazy feeling or burning feeling around your mouth, I want you to place 1 tablet of lysine 1000 mg in the morning and 1 tablet at night, and where ever you feel the itchy , put some lysine cream on.. 100 % your OB will not occure or it will be lesser or not that long.

Dont take antibiotics I dont like them and they suck at what they do, plus they cost to much.

If you already have ob than take about 3000 Mg of Lysine and 2000 mg of vitamin C.. Your ob should go away quick..

Do not eat chocolate or anything that has L - Argine (sp ? ) in it, it helps hereps virus.

Read my next post regarding your dum rhumy and testing.
Hello,

I am sorry you have Oral Herpes, but when you state then everyone in the world has it, you are wrong. I do not understand how you can make a judgement like that??

You also completely dismiss Lyme Disease for other people, when I myself was diagnosed with the "fake" disease called Chronic Fatigue. As I stated before, Chronic Fatigue is a diagnosis doctors give when they can't come up with the real problem. It is coming out that more and more people who were diagnosed with Chronic Fatigue really do have Lyme.

Deejavu

 
Old 04-11-2005, 11:35 AM   #15
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lodoka HB User
Re: If anyone needs help, I am here.

deejavu - that is correct... Nearly the entire population has oral herpes, many of the people dont see the symptomes because their immune system keeps it dormant.. Dont think so, ask your doctor.. It is proven by CDC That 90% of the population has HSV 1 - IT IS NOT AN STD... You can get it from sharing glass, kissing etc...CDC does not consider that to be an STD. Type 2 is STD .

CFIDS you are also correct is it a underlying disease that some doctors cant find out, why ???? Because they arent test for it yet.

If you have SCMV - How can anyone test you for that ?? Tell me, it will turn into a really nasty CFIDS, but they are no test for it .. So the doctors will tell you, you are some crazy kid going nuts... With all the symptomes and finally say, hey kido you have CFIDS so go home and live with it..

Read my post again, lyme , ebv, cmv, hhv 6 are just type of infections that CAN cause CFIDS... Its all upon the person immune system, how well they can handle it.

Most CFIDS are cause by overactive of immune system. Ask your doctor who is a immunologist doc and he should know.

I am not a doctor but trust me I have been with over 22 doctors including immunologist, infection disease and everyone thats how I learned many of these stuff.

Lyme Disease - test offer by Sonora quest and LabCorp their test SUCKS. They do not really pick up lyme disease at all..

please go see a LDMD. WB Lyme should be good, but I dont think its accurate enough , compare to some other private companies offering lyme test.. I think one is in CA, dont really remember.

Hope that helps

 
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