It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Fatigue Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 04-11-2005, 03:10 PM   #16
Inactive
 
Join Date: Aug 2004
Location: Long Island, USA
Posts: 1,864
deejavu HB User
Re: If anyone needs help, I am here.

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

 
Sponsors Lightbulb
   
Old 04-11-2005, 04:30 PM   #17
Senior Veteran
(female)
 
Join Date: Jan 2004
Posts: 1,021
tkgoodspirit HB Usertkgoodspirit HB User
Re: If anyone needs help, I am here.

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

 
Old 04-11-2005, 04:48 PM   #18
Inactive
 
Join Date: Aug 2004
Location: Long Island, USA
Posts: 1,864
deejavu HB User
Re: If anyone needs help, I am here.

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

 
Old 04-11-2005, 10:34 PM   #19
Inactive
(male)
 
Join Date: Jul 2004
Posts: 544
CFD 333 HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by 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??

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.

 
Old 04-11-2005, 11:40 PM   #20
Senior Member
(male)
 
Join Date: Feb 2005
Posts: 106
lodoka HB User
Re: If anyone needs help, I am here.

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.

 
Old 04-12-2005, 10:59 AM   #21
Inactive
(male)
 
Join Date: Jul 2004
Posts: 544
CFD 333 HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by 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!

 
Old 04-12-2005, 08:20 PM   #22
Inactive
(male)
 
Join Date: Jul 2004
Posts: 544
CFD 333 HB User
Re: If anyone needs help, I am here.

Quote:
Originally Posted by deejavu
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....

Last edited by CFD 333; 04-12-2005 at 08:38 PM.

 
Old 04-12-2005, 09:56 PM   #23
Senior Member
(male)
 
Join Date: Feb 2005
Posts: 106
lodoka HB User
Re: If anyone needs help, I am here.

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

 
Old 04-14-2005, 10:15 PM   #24
Senior Member
(male)
 
Join Date: Feb 2005
Posts: 106
lodoka HB User
Re: If anyone needs help, I am here.

Does anyone need any help

 
Old 04-21-2005, 05:28 PM   #25
Junior Member
(female)
 
Join Date: Apr 2005
Location: Redondo Beach, CA
Posts: 36
Kathy90277 HB User
Re: If anyone needs help, I am here.

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.

 
Old 04-21-2005, 05:34 PM   #26
Junior Member
(female)
 
Join Date: Apr 2005
Location: Redondo Beach, CA
Posts: 36
Kathy90277 HB User
Re: If anyone needs help, I am here.

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.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Please friend needs help bad, worried sammyo1 Addiction & Recovery 4 09-10-2008 07:14 AM
anyone else have problems sleeping? mmmcoffee Caregivers 15 08-09-2007 04:31 PM
Therapy helped anyone with GAD & Panic attacks? lindam72001 Anxiety 9 08-30-2006 10:47 AM
Anyone Doing PDF? Mommie-2-B Infant Care (up to 18 months old) 22 02-12-2006 06:04 PM
Has anyone actually gotten better? Wantobehealthy Acid Reflux / GERD 24 08-10-2005 07:53 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



CFIDS (3), sleepykitty44 (3), paulapage1980 (3), wigs123 (3), Brodie179 (3), ladybud (3), mare50 (3), RickinOH (3), neveragain444 (2), mads12 (2)

Site Wide Totals

teteri66 (1166), MSJayhawk (1000), Apollo123 (899), Titchou (835), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 05:04 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!