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.

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

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

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...

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

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

GG

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

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

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.

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.

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.

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

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.

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?? :confused: :confused:

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

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

Hi Lodoka,

HSV1, also known as Cold Sores is common and I read that 80% of the U.S. Population has it. HSV1 or Cold Sores are NOT a sign of Herpes Simplex Infection (HSV2).

When someone is fatigued or has an immune system deficiency, the cold sores will become activated.

You ask why there isn't a test for CFIDS? Because CFIDS is not caused by a bacterial infection.

Doctors have told me years ago that I had CFIDS but I didn't go home and live with it. Instead I researched CFIDS because I didn't buy that diagnosis.

Because of my intensive research I found out that I have 2 forms of Lyme Disease, and I needed a Test to prove it, which I finally got after going to over 100 doctors and finally having my blood sent to the Best Lab in the United States.

I have seen many doctors who considered themselves Lyme Literate, but they were not. I finally found one 2 years ago who treated me for 1 form of Lyme, but not the other so I had relapsed. Many people who are infected with Lyme are usually "co-infected" like myself.

I have an appointment this month with a well-known Lyme Doctor and will probably be put back on Doxyclycline.

The sad part of Lyme Disease is most doctors are NOT Lyme Literate. What is also sad is that 99% of Laboratories do NOT use 100% pure Lyme Antigen mixed with one's blood, so the result comes back Negative.

I truly believe that anyone suffering from Chronic Fatigue should get tested for Lyme by a Lyme Literate Medical Doctor (not easy to find) and have their blood sent to the Igenix Lab in California as that is the best Lab in the United States.

That's the Lab in California that you mentioned (Igenix Labs).

If Lyme is not caught in the early stages it becomes more difficult to treat. Also, most people do not get a Rash (another myth).

I don't wish Lyme Disease on anyone, but I believe it's a good idea to get it checked out and if they don't have it, at least one knows that is not causing their Chronic Fatigue and can go on to find out what is affecting their Immune System.

Good luck,
Deejavu

Okay, I have two questions/comments.

First, I know that there is some SSD "code" for Chronic Fatigue, call it CFS or CFIDS, but I know it is much easier to get approved for SSD when you have a dx of CFS than just Fibromyalgia. I have seen it.

Also, about the Lyme Test. My rheumy agreed to test me for this last year, but we never did. I think I forgot to mention it when I saw her. Anyway the lab at the hospital does the Western Blot test which is what I heard that the lab in Calafornia does. I had sent away for their test, Western Blot from the exact lab that you mention, but my hospital already does that test, so I figured it would be okay. I've never shown a rash from a tick bite before, but did have an awful infestation of them in my yard and my house when they were on my poor dogs. My poor Golden Retriver, I had to shave her twice last year, cuz, she got them so badly you couldnt' see them unless all her hair was gone. She had them so bad in her toes I had to pick them off and her little toes would bleed so bad. I have had them in my bed with me, which totally grossed me out! One of our little dogs sleeps in the bed, so I guess a couple would go roaming from time to time! Now that's a gross feeling on you, feeling a little critter crawling on your leg and you see it's a tick! Ahh! But I never felt a bite or saw a rash, but I DO believe having CFS/CFIDS is an underlying cause of something else. SOMETHING is causingyour immune system not to work right. And I have the simplex 1 herpes, I get them in the corners of my mouth and sometimes on the inside, but THAT too has to be caused by some sort of compromised immune system doesn't it? So something is in there creeping around.

Oh and I did NOT get a return call from my rheumy today. I'll give her tomorrow, cuz, she may be busy with the Bextra recall, and then I'm going to call my PCP. See what happens.

Thanks a lot.

tk

Hi Tk,

Very interesting about your dogs having ticks. As I said before, you do not have to have a Rash to have Lyme. Most people do not get a Rash. Being that your dogs got tick-infected tells me that you live in an area that breeds many ticks, not good at all.

Please don't use your Hospital for the Western Blot as you don't know if they will use 100% Pure Lyme Antigen. Please have your Blood sent to Igenix in Palo Alto, California, they have the #1 reputation in all of the U.S.

Good luck and keep us updated,
Deejavu

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?? :confused: :confused:

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

I personally have to state that I'm growing extremely tired of people coming on the Chronic Fatigue forum and trying to convince everyone that they actually have "Chronic" Lyme Disease when there is absolutely no medical basis for it whatsoever. These so called "Lyme Literate Doctors" must be extremely charismatic people to be able to swindle so many Fibro/CFS patients into believing they have a Lyme infection when indeed they do not.

The truth is, Deejavu, that Chronic Fatigue Syndrome IS a legitimate disorder whether you want to believe it or not. The latest research by world renowned researchers such as Dr. Kenny De Meirleir have proven that a deregulated immune system is the most likely cause of the majority of symptoms displayed by patients. The triggering event of the illness may vary from car accidents to previous viral/bacteria exposure to extreme stress, but the end result is the same. The proof that they are on to something is that the drug Ampligen, which is specifically designed for CFS patients to modulate the immune system and restore normal functioning, is showing a tremendous amount of promise and is very near FDA approval.

You really should invest more time into researching these things before coming on here and making such ridiculous statements and belittling those, like me, who really do suffer from this terrible affliction.

Everyone needs to read my post correct before assuming anything, deejav. I never said anything about HSV 1 causing CFIDS or same thing as HSV 2. They are complete two different virus. One for oral and other is for genital.

Lyme Disease can cause CFIDS, because lyme disease is usually associated with several other viral infections such as brantwalla quientana (sp ?? ) - it is known to attack the immune system, causing all kinds of problem.

No body really knows why some people form CFIDS and why others dont.

Also getting LYME for everyone DOES NOT MEAN they have CFIDS.

Have you done complete immune system test ? If so, please post your results, I like to see your Natural Killer cell and T-Cells ratio.

The truth is, Deejavu, that Chronic Fatigue Syndrome IS a legitimate disorder whether you want to believe it or not. The latest research by world renowned researchers such as Dr. Kenny De Meirleir have proven that a deregulated immune system is the most likely cause of the majority of symptoms displayed by patients. The triggering event of the illness may vary from car accidents to previous viral/bacteria exposure to extreme stress, but the end result is the same.

I think although CFS is a legitimate disorder, it is the mere fact that it is diagnosed by the majority of doctors when they can't find anything wrong through carrying out blood tests, that gives rise to the theory that it can't possibly be an illness. This of course is extremely misleading as science is still not advanced enough to develop tests to diagnose every single illness out there. Also, I would suggest that a number of people diagnosed with CFS actually have other disorders, such as Lyme (if there in a country where this is prevalent) or hypothyroidism. I, for one, was diagnosed with CFS back in November, but recently have started to develop a goitre in addition to symptoms which were already hypothyroid in nature.

The proof that they are on to something is that the drug Ampligen, which is specifically designed for CFS patients to modulate the immune system and restore normal functioning, is showing a tremendous amount of promise and is very near FDA approval.

Wow! That's great news. :) I haven't ever heard of Ampligen. Wouldn't it be amazing if there was a prescribable medicine for this awful illness?

I personally have to state that I'm growing extremely tired of people coming on the Chronic Fatigue forum and trying to convince everyone that they actually have "Chronic" Lyme Disease when there is absolutely no medical basis for it whatsoever. These so called "Lyme Literate Doctors" must be extremely charismatic people to be able to swindle so many Fibro/CFS patients into believing they have a Lyme infection when indeed they do not.

The truth is, Deejavu, that Chronic Fatigue Syndrome IS a legitimate disorder whether you want to believe it or not. The latest research by world renowned researchers such as Dr. Kenny De Meirleir have proven that a deregulated immune system is the most likely cause of the majority of symptoms displayed by patients. The triggering event of the illness may vary from car accidents to previous viral/bacteria exposure to extreme stress, but the end result is the same. The proof that they are on to something is that the drug Ampligen, which is specifically designed for CFS patients to modulate the immune system and restore normal functioning, is showing a tremendous amount of promise and is very near FDA approval.

You really should invest more time into researching these things before coming on here and making such ridiculous statements and belittling those, like me, who really do suffer from this terrible affliction.

Hi Lamotta,

I never tried to "convince" anyone that they have Lyme Disease. You misinterpreted my posts. I basically said that I believe it's a good idea for any suffering from Chronic Fatigue to get checked for Lyme as Chronic Fatigue has many of the same symptoms as Lyme Disease.

No doctor can "swindle" anyone to believing that have Lyme for the reason being that one must be tested and have medical proof that either they have Lyme or they don't.

Yes, Chronic Fatigue is a "Disorder" which I was diagnosed with many years ago. But I questioned my diagnosis and researched it for over 6 years.

To my knowledge, there is no medical proof of what causes Chronic Fatigue and in my opinion, it is a made-up name that doctors use to diagnose someone when they can't find the "real problem". I am not saying that the "real problem" is Lyme, I am saying the Lyme is a possibility. There are many other possibilities of the cause of Chronic Fatigue which could be depression, another bacterial infection, and the list goes on.

If you want to believe you have Chronic Fatigue and settle for that, that's your choice. I didn't settle for that diagnosis and because of that, I found out that I have Lyme Disease, not a fun disease, but it's a real disease and can be treated.

Deejavu

Hi Lamotta,

I never tried to "convince" anyone that they have Lyme Disease. You misinterpreted my posts. I basically said that I believe it's a good idea for any suffering from Chronic Fatigue to get checked for Lyme as Chronic Fatigue has many of the same symptoms as Lyme Disease.

No doctor can "swindle" anyone to believing that have Lyme for the reason being that one must be tested and have medical proof that either they have Lyme or they don't.

Yes, Chronic Fatigue is a "Disorder" which I was diagnosed with many years ago. But I questioned my diagnosis and researched it for over 6 years.

To my knowledge, there is no medical proof of what causes Chronic Fatigue and in my opinion, it is a made-up name that doctors use to diagnose someone when they can't find the "real problem". I am not saying that the "real problem" is Lyme, I am saying the Lyme is a possibility. There are many other possibilities of the cause of Chronic Fatigue which could be depression, another bacterial infection, and the list goes on.

If you want to believe you have Chronic Fatigue and settle for that, that's your choice. I didn't settle for that diagnosis and because of that, I found out that I have Lyme Disease, not a fun disease, but it's a real disease and can be treated.

Deejavu

A Lyme Literate Doctor cannot swindle his/her patients, eh? Thats incredible that you might say that. First of all, I know for a FACT that these physicians will diagnose patients for Lyme Disease improperly. I'll tell you a story of something that happened to a patient that lives near me...

There was a woman complaining of fatigue, memory loss, weakness, joint pains, and malaise. She, like so many, had heard of the big Lyme Disease scare and bought into the hype. She went to a highly recommended Lyme Literate Doctor in the area and he immediately said, "oh yes, you definitely have Lyme Disease." The real KICKER here is her blood tests may or may not have shown a positive ELISA/Western Blot but that doesn't matter anyway, because guess what...the majority of these physicians will tell you that the test is highly flawed and can't be relied on! So he put her on Rocephin IV, which is hands down the best medication available to treat Lyme Disease and the most expensive, and kept her on it for months and then years because her symptoms were still persistant.

"We have to keep battling this disease," he told her, "Lyme disease is very difficult to treat and it could take years of antibiotics to rid you of it..." "Ok," the woman said, "I'll keep taking it." Being as how Rocephin is an incredibly expensive medication which can cost around $12,000 to $14,000 a month, this woman was having tremendous financial difficulties keeping up with the costs. She was convinced that she had to keep up on it, so she had to sell her home and most of her more expensive belongings. Finally, after over a year and $100,000 spent on Rocephin therapy, the woman was STILL suffering from her illness and was becoming extremely desperate and then finally decided to see an Infectious Disease Specialist.

After a careful evaluation of her symptoms, blood work, and her long history of being on antibiotics, the physician met up with her and had to tell her some really bad news...it turned out that this poor woman NEVER had Lyme Disease in the first place! She was actually suffering from MS! Over a year and $100,000 completely wasted! Luckily they got it under control in time for her.

I assure you that this story is completely the truth as it was told to me by MY Infectious Disease Specialist after I told him that I thought I may have Lyme Disease. The point of this story is this...

1) If you ever think you may have Lyme Disease, see an Infectious Disease Specialist FIRST...they will give you the facts and cut through all the hype.

2) NEVER let any doctor convince you to try the most expensive IV medications first without at least attempting the oral ones...this is the oldest trick in the book to seperate people from thousands of dollars and many Lyme Literate Doctors are getting a piece of that action...don't let 'em fool ya.

3) Don't let anyone convince you that years of antibiotics are required to cure Lyme Disease...it just isn't true...a LARGE majority of REAL Lyme sufferers will be cured within a couple of months and usually start feeling much better with 2-3 weeks...that is a fact!

4) Just as in Chronic Fatigue Syndrome, you should definitely eliminate ALL other possible causes before thinking that Lyme Disease is your problem...this kind of thinking could save you lots of money and maybe even your life someday.

5) Never let a positive ELISA/Western Blot blood test be the definitive answer in your diagnosis. Lyme Literate Doctors can so easily mislead you with this one because they lead you to believe the test is flawed when it shows negative and that its strong evidence for Lyme Disease when it shows positive...see the scam here? Once and for all, these tests are NOT designed to diagnosis Lyme Disease....only confirm a diagnosis. These tests only measure the antibodies to the Borrelia Burdorferi bacteria and NOT the actual bacteria itself. Because of the poor ability to diagnose Lyme Disease properly, there is still a lot of myths surrounding it...Stay On Your Toes And Keep Well Informed!

I personally have to state that I'm growing extremely tired of people coming on the Chronic Fatigue forum and trying to convince everyone that they actually have "Chronic" Lyme Disease when there is absolutely no medical basis for it whatsoever....
The truth is, Deejavu, that Chronic Fatigue Syndrome IS a legitimate disorder whether you want to believe it or not. .

LaMotta77,
Thank you for saying these things. I know you speak for so many of us who get very tired of people referring to CFS diagnoses as "fake" and "incorrect." The truth of the matter is, the majority of people with FMS/CFS/MPS do NOT have Lyme. You have a better chance of a different misdiagnosis.

I think it sends the public the wrong perpetual message when people refer to CFS as a "fake diagnosis" or "not an actual syndrome." Its already misunderstood enough, why make it worse for people who actually DO have this ailment.

I trust all my docs, who have said I DONT have Lyme, based on their testing and medical skills and knowledge. Are they ALL wrong? Or Lying? God, I hope not, that would be a massive conspiracy. The truth of the matter is, I have CFS (along with other things). And as soon as we stop donwplaying its existence, the sooner we can find a way to help those who suffer from it.

PS- Just as its a good idea for people diagnosed with CFS to get tested for Lyme, its also a good idea to get tested for Thyroid problems, MS, Cancer, Lupus, etc. I mean, there can ALWAYS be a misdiagnosis with ANY of these--not just Lyme. But people have to TRUST yourselves and your doctors! We all cant just trust ONE solitary lab in California to give us the proper blood test results! Many of us dont have the means or access ( or insurance) to pick and chose who tests our blood...and there thousands of repuatble labs in this country. We just have to pay attention to our bodies, stay informed, and at some point, you have to trust your docs!

I assure you that this story is completely the truth as it was told to me by MY Infectious Disease Specialist after I told him that I thought I may have Lyme Disease.

A LARGE majority of REAL Lyme sufferers will be cured within a couple of months and usually start feeling much better with 2-3 weeks...that is a fact!


Hi Lamotta,

First of all, that is a very sad story about your friend being misdiagnosed. I was misdiagnosed several times, but I didn't accept my diagnoses like your friend did. I believe in getting 2nd, 3rd, 4th opinions because I don't trust most doctors. I find it really sad that your friend bought this doctor's diagnosis and paid for all that medicine.

Secondly, you stated that your Infectious Disease Specialist told you this story. Didn't you know that all doctors (according to the AMA) are not allowed to discuss other patient's history. That is a law designed to protect the privacy of people. Also known as the Hippocratic Oath.

As far as Lyme being cured within weeks, that is true only for people who are diagnosed as soon as they were bit by a tick. Even then, the lyme bacteria is very sneaky as it does lay dormat.

I have Chronic Lyme Disease and to my knowledge, I will never be 100% cured because I was not diagnosed early enough. Every test came back Negative for 5 years so the lyme bacteria kept multiplying in my blood and caused me to become disabled and now I have permanent bone damage.

I found out that those Labs who tested my blood did NOT use 100% pure lyme antigen, thus the Negative Results.

After seeing over 100 doctors, no kidding, I finally found a nurse who drew blood from my finger and put it on a slide. That was when I first learned about Spirochetes and how deadly they are. From there, I went to another doctor and explained about the Spirochetes in my blood. Then I was tested again and this time, my blood was sent to a reputable Lab in California.

My point is that many people are misdiagnosed, including myself. I lost most of my respect for doctors.

Since you talked about your friend, I also have friends who were diagnosed with MS and ended up to have Lyme. So it works both ways.

Bottom line? Everyone should research their doctor and not always believe what their doctor tells them. If I believed my doctor diagnoses, I don't think I would be around to talk about this today.

I guess I am a very different type of person compared to most as before I take any action (whether it's medication, doctor's advice, etc.), I do my research and get more opinions.

I am extremely open-minded and I feel sorry for anyone on this Site who is close-minded as I find that close-minded people will never get better.

I find it very sad that some people resent me posting on this site as I really feel for anyone is suffering.

My only reason for posting in the first place was when I read about the CFS symptoms because I identify with those symptoms.

I enjoy helping others, and if that offends you, then I am sorry.

Deejavu

LaMotta77,
Thank you for saying these things. I know you speak for so many of us who get very tired of people referring to CFS diagnoses as "fake" and "incorrect." The truth of the matter is, the majority of people with FMS/CFS/MPS do NOT have Lyme. You have a better chance of a different misdiagnosis.

I think it sends the public the wrong perpetual message when people refer to CFS as a "fake diagnosis" or "not an actual syndrome." Its already misunderstood enough, why make it worse for people who actually DO have this ailment.

I trust all my docs, who have said I DONT have Lyme, based on their testing and medical skills and knowledge. Are they ALL wrong? Or Lying? God, I hope not, that would be a massive conspiracy. The truth of the matter is, I have CFS (along with other things). And as soon as we stop donwplaying its existence, the sooner we can find a way to help those who suffer from it.

PS- Just as its a good idea for people diagnosed with CFS to get tested for Lyme, its also a good idea to get tested for Thyroid problems, MS, Cancer, Lupus, etc. I mean, there can ALWAYS be a misdiagnosis with ANY of these--not just Lyme. But people have to TRUST yourselves and your doctors! We all cant just trust ONE solitary lab in California to give us the proper blood test results! Many of us dont have the means or access ( or insurance) to pick and chose who tests our blood...and there thousands of repuatble labs in this country. We just have to pay attention to our bodies, stay informed, and at some point, you have to trust your docs!


HEY MY FRIEND! How ARE you!? I have been so wondering where you have been! I even sent a "yoo hoo" for you.

I'm glad you posted what you did here, you to lamotta. I was just recently dx'd with CFS. I have been feeling "different" ever since I had E-Coli last year. More tired, more specific pain, more trigger points that are inflamed (my upper back is full of nodules) and the sore nodes in my neck and under arms. So a rheumy (not my regular "rheumy from hell"!) and my PCP told me I had CFS, and MPS. Soooooo...I called my regular rheumy to ask for more complex immune system testing and she said that she didn't refer out CFS patients, which I know she does, because we have spoken about it before, and I really can't see why she can't refer out, it's just that she's mad because I insisted that she add the dx'd that SHE gave me of Chostochondritis to my records. But anyhoo, I called my PCP and his nurse called me back and he didn't know what the specific tests I listed were, so I just said I needed a referal to an Infectious Disease Specialist, which is what my rheumy said I needed. So, I hope to hear from him tomorrow. I just want to have the intense blood work done to see if there is something underlying that is making me feel "sick" all the time. If I do ANYTHING strenous, I feel "sick" for a couple days after. I just don't feel good, and I'm tired of blaming it on the Fibromyalgia. But at least knowing I have CFS is something. I trust my PCP enough to refer me to an Infectious Disease doc. The other rheumy I saw said the tests weren't necessary, but I WANT them, I just don't get why you can't get something like that if you want it. What's the big deal? Why is it so hard to convince a doctor to run certain blood tests on you? They work for us right? And if all the tests are negative fine, what are we out, some bucks and some blood. Okay. I know that I am feeling "different" than I did when I just had Fibro and all my back problems. The back problems are pretty much isolated, but the all over "ill" feeling is new, it's not really the pain, it's the "sick" feeling. I don't feel well and I want some immune system blood tests done to see if there is something going on. I want for one, Epstien Barr and a couple others. I also have recently developed recurring oral herpes. I have consitant open sores (fever blisters/cold sores) in the corners of my mouth. They don't heal, or if they do, it's only for a few days. So isn't herpes caused by a compromised immune system? That's why I think somethings in there creeping around! LOL

Anyway, yes I believe I have CFS, or as some docs call it Chronic Fatigue Immune Deficiancy (or is it Dysfunctional?) Syndrome. I have noticed in researching it, that some docs write it off as a "well you have it" condition, like Fibro. Not knowing where it comes from and how to definately dx it except by ruling out all other conditions, and I have noticed that some docs consider it an disorder of the immune system.

So, there is my rambling! LOL Did I make any sense? Good heaven's I don't know if I made any kind of sense whatsoever! LOL Sorry!

Anyway, good to see you Neverenoughslee! I missed you. I hope you are doing okay. I'd like to hear from you more, like how things are going.

Here's wishing everyone a good spirit!
tk

Hi Lamotta,

First of all, that is a very sad story about your friend being misdiagnosed. I was misdiagnosed several times, but I didn't accept my diagnoses like your friend did. I believe in getting 2nd, 3rd, 4th opinions because I don't trust most doctors. I find it really sad that your friend bought this doctor's diagnosis and paid for all that medicine.

Secondly, you stated that your Infectious Disease Specialist told you this story. Didn't you know that all doctors (according to the AMA) are not allowed to discuss other patient's history. That is a law designed to protect the privacy of people. Also known as the Hippocratic Oath.

As far as Lyme being cured within weeks, that is true only for people who are diagnosed as soon as they were bit by a tick. Even then, the lyme bacteria is very sneaky as it does lay dormat.

I have Chronic Lyme Disease and to my knowledge, I will never be 100% cured because I was not diagnosed early enough. Every test came back Negative for 5 years so the lyme bacteria kept multiplying in my blood and caused me to become disabled and now I have permanent bone damage.

I found out that those Labs who tested my blood did NOT use 100% pure lyme antigen, thus the Negative Results.

After seeing over 100 doctors, no kidding, I finally found a nurse who drew blood from my finger and put it on a slide. That was when I first learned about Spirochetes and how deadly they are. From there, I went to another doctor and explained about the Spirochetes in my blood. Then I was tested again and this time, my blood was sent to a reputable Lab in California.

My point is that many people are misdiagnosed, including myself. I lost most of my respect for doctors.

Since you talked about your friend, I also have friends who were diagnosed with MS and ended up to have Lyme. So it works both ways.

Bottom line? Everyone should research their doctor and not always believe what their doctor tells them. If I believed my doctor diagnoses, I don't think I would be around to talk about this today.

I guess I am a very different type of person compared to most as before I take any action (whether it's medication, doctor's advice, etc.), I do my research and get more opinions.

I am extremely open-minded and I feel sorry for anyone on this Site who is close-minded as I find that close-minded people will never get better.

I find it very sad that some people resent me posting on this site as I really feel for anyone is suffering.

My only reason for posting in the first place was when I read about the CFS symptoms because I identify with those symptoms.

I enjoy helping others, and if that offends you, then I am sorry.

Deejavu

Deejavu, you have your facts wrong my friend...First, the story my Infectious Disease Specialist told me about was a woman that I don't know and have never met. I know she is from my area because she went to a doctor in my area; I made that assumption. Obviously, my doctor never told me her name...that is a violation of privacy protection laws known as HIPAA.

Secondly, why do you state that you don't think you will ever be 100% again? Who convinced you of that? Your immune system is the cause of your illness, not the bacteria directly! Borrelia Burdorferi doesn't do any damage on its own...its the immune systems overreaction to the bacteria that causes symptoms. Most likely in due time your immune system will rebalance itself and you'll be just fine. The prognosis for Lyme Disease patients, if you have Lyme Disease, is very good...I wouldn't count yourself out just yet.

Thirdly, if you do infact have Late Stage Lyme disease, its HIGHLY unlikely what you saw on that slide was Borrelia Burdorferi. The bacteria moves into the tissues of your body and lies there...It's not likely that you would ever find it in your blood. That, after all, is what makes it take several months to treat this disease in later stages...the antibiotics have to effectively penetrate the tissues of the body and eradicate them from within.

Fourthly, why would I ever be offended by you trying to help others? That's the EXACT same reason I am here. The last thing I want to see is people diagnosed with CFS/Fibro wasting thousands of dollars on IV antibiotics when they never needed them. All I am doing is offering sound advice to patients so they don't get scammed...I've seen it done and its sad.

Finally, I have to make the comment that I never implied that antibiotics are completely worthless in treating someone with Chronic Fatigue Syndrome. That fact is some of us are helped by them. Sometimes, because of the immune system dysfunction, we can have an underlying C. Pneumoniae or Mycoplasma infection. Antibiotics, in this case, may be beneficial in helping keep on top of the illness. There is even evidence to suggest that beta lactam antibiotics may serve to help regulate the immune systems of CFS patients...this explains why some people, depending on which antibiotic they are using, sometimes feel better while they are on it and then relapse when they go off. Unfortunately, it never cures the condition, but can help reduce symptoms until it eventually resolves on its own. Could this be why so many people labeled with "Chronic Lyme Disease" who really have CFS/Fibro swear by taking antibiotics for YEARS?? Hmmmmmmmmmm....

tkgoodspirit - recurrence Oral Herpes, indicate three things.

1.) You are really stress
2.) You eat chocolate, or other food that herpes love.
3.) Something is wrong with IMMUN SYSTEM.... Get a T-Cell Test done.

CFIDS, that is true... I mean, no one is really Born with CFIDS.. Its something someone really aquires it. If someone told me that you were born with CFIDS, I would smack them upside down. Something caused our immune system to go nuts, what did cause it ? No one really has any idea to. Many doctors believe Human Herpes and CMV are responsible for majority of CFIDS problem, but how can a virus that does not affect millions of people have a really strong effect on us ? Somethings just dont make any sense.

I am like many of you, I dont have lot of money and I have pains all the time. I am dizzy much of the day and I could barely work, anyhow, Three years ago I was healthy with no problem, all my problem started after sexual encounter. Know, I do feel that I got something that I should of not gotten, it has messed up my immune system..

I have spend nearly over thousands of dollar on medical, Natural theraphy, antibiotics, MRI, blood work. Result nothing shows up.

After begging and asking doctors for test, I finally figured out I have:

HHV 6, CMV, Mycoplasma, Negative Stepha, and who knows somestuff that we cant get tested for.

I am 21 years old, where will life take me ? Is it better to die, sometimes I do think that.

Yes, Antibiotics are good while you are on them, for me they are really helpful when I am on them after I am off them, everything comes back.

Lyme disease, I dont think I am to much of worry about LYME, since many doctors have told me that you cant really get Lyme through kissing or anything like that.

Oh well, lets just stick to this and find out whats on the road.

CFIDS - I have tried so many natural stuff and antibiotics...Nothing worked, finally I stop looking for source, becuase if I had been on every single antibiotics and it hasnt cured anything, what will it cured after finding out what i have ??..

Ben

Does anyone need any help

Hi! I was diagnosed with CFIDS in May 2004. It's been a long bumpy ride and I sure am tired all the time. I see an infectious disease doctor who specializes in CFIDS and Viruses. I have a virus that is attacking my nerves. We aren't sure which virus it is though. Very perplexed. I have extreme weakness on right side. I also have peripheral Neuropathy.

I've been reading some of the posts about Lyme disease. I can assure you I have CFIDS. The doctor I am dealing with has been researching CFIDS and Viruses for years. His son has the same thing. He barely got him through college and it was a struggle. He is hanging in there.

I have done a lot of reserach on CFIDS myself. If you haven't seen the video by Kim Snyder called "I Remember Me" where she interviews Blake Edwards (famous director) who has the disease, it's a wonderful video. Very enlightening.