We can't both have this, how will we survive?????

Discussion in 'Fibromyalgia Main Forum' started by nah.stacey, Apr 4, 2010.

  1. nah.stacey

    nah.stacey Member

    We who have this know it is a viral thing and have tried for years to explain to Dr.s that it truly isn't a depressive disorder.

    I have had this DD since about 2000 and my second son has had it since then also. NOW my husband is showing more and more symptoms of CFS. How are we going to survive? We can't both go down. I am totally homebound/bedbound and have been for the the last three years. If he escalates as fast as I did in being disabled how are we going to survive? I am just now filing for disablility in the off chance his company goes down, or the restructure again.

    I am very, very scared. I'm absolutely heart sick that I have passed this on to him. I believe I contracted this from my father and it was set off in 1998 when I got bacterial pneumonia.

    Then my son who is now 24 got mono his senior year in high school and is getting worse every year. Now my hubby is coming down with the flu symptoms more and more frequently and never feels well anymore, is incredibly fatigued and cant get enough sleep to save himself.

    Please if any of you have a spouse who has this let me know your timeline. When you got it vs when they got it, how do you cope?

  2. gb66

    gb66 Well-Known Member

  3. spacee

    spacee Member

    I know a whole family that has "it' ...3 generations. Turns out they have lyme.

    Something to consider.

    Feel so awful bad for your family. This family lived in Texas.

  4. chaps

    chaps New Member

    Actually there are some researchers/scientists who argue that Lyme IS contagious and can be transmitted from pets to humans from various types of contact and humans to humans through transfer of bodily fluids.

    You were bitten by something on a nature walk? You had a bullseye rash? Gadzooks, what more evidence do you need? Tests for Lyme are notoriously unreliable, so much so that those most in-the-know recommend several different varieties of tests such as IGENEX blots, flow cytometry, CD57, and a look at symptom history to come up with a best guess. False negatives are so common that some doctors treat for it prophylacticly.

    CFS/FM can have one or multiple viruses as the underlying cause, such as Epstein Barr (HHV-4), Cytomegalovirus, Human Herpesvirus 6, and Human Parvovirus and now this XMRV thing. In some cases, the viruses came along mainly because the immune system was compromised by something else, such as mercury toxicity from amalgam fillings, or other toxicities that create an environment where parasites thrive. These parasites embed themselves in the stomach and gut causing leaky gut syndrome, which causes the autoimmune problems and the lack of immunity to the viruses mentioned. And then, presto, you've got CFS. If your CFS causes you interrupted sleep, then you'll also get fibromyalgia along with it.

    Another source could be long term or repeated use of antibiotics or anti-inflammatory medicines both steroidal and non-steroidal. These things can kill the good bacteria in the digestive tract allowing yeast (candida) and fungus overgrowths. The yeast and fungal overgrowths again can cause the leaky gut syndrome which throws your immune system out-of-whack. The gut permeability allows food particles to leak into the system undigested and the immune system sees them as intruders and gets very confused. This causes the autoimmune reactions such as arthritis and delayed food allergies while weakening your defenses to bacterial and viral intruders. Then you get a double whammy because you've got the virus and the digestive problems kicking your butt at the same time.

    If I were you, I'd get with an LLMD asap. If an LLMD tells you that there is no chance that you have Lyme, then I'd buy "From Fatigued to Fantastic" by Dr. Jacob Teitelbaum and read it cover-to-cover. Then find a good homeopathic doctor who specializes in CFS.

    Whatever you do, don't waste time. Don't get discouraged or complacent. You must be fighting it in some way at all times until you're better. If something doesn't work, try something else. Keep trying until you win. You will win as long as you don't run out of money first.

    I wouldn't waste time with rheumatologists. They might give you drugs for arthritis. That doesn't fix the problem, it only treats the symptoms while damaging your liver and kidneys which are already under duress. When the SOURCE of the problem is addressed, the symptoms such as arthritis will go away.

    Good luck, I hope this helps.
  5. spacee

    spacee Member

    Dr. Cheney (CFS Researcher/Doctor) says the LLMD's(Lyme Literate MD's) say that since HIV there has been a huge increase in the number of Lyme cases and they don't know why.

    Seems something worth ruling out.


  6. CanBrit

    CanBrit Member

    My husband was told a year ago by a ortho guy that he had fibro. My family Dr almost passed out laughing, but I'm not so sure its that funny. I do believe I contracted FM from a virus, and if that is true, then it is also possible that he can contract it from me. Until they definitively find a cause, I guess we'll never know. He hasn't had any tests done, i.e. tender points, etc, but it sure makes you wonder.

    All the best.

  7. Nanie46

    Nanie46 Moderator

    I made the mistake of thinking that my illness was caused by a virus. I am an RN and I would have sworn it was a virus. My PCP told me it was a virus.......and 21 years later I found out it was not a virus!

    It is very likely, that like many others here have found out, you have a chronic borrelia burgdorferi infection (lyme) AND babesia AND bartonella and perhaps other coinfections.

    If you have overwhelming fatigue, or air hunger or night sweats or migraines you should consider babesia...a parasitic infection of the red blood cells similar to malaria and spread by ticks.

    If you have occasional swollen glands, or anxiety, or mood swings, or sore soles or morning fevers or stretch mark-like rashes you should consider bartonella, a common infection spread my ticks and cats.

    If you have fatigue, pain, sleep problems and cognitive problems to name a few you should consider lyme. Most people with lyme also have other tick-borne coinfections too like babesia, bartonella and ehrlichia.

    Lyme can seem to run in families because it can be spread through body fluids, from mother to fetus through the placenta and through breastfeeding. Also, since families live and play in the same areas, they often have all been bitten, often unknowingly, and are all infected.

    Sometimes after the initial infection, ones's body may be able to fight the infection and keep symptoms at bay. Then later, after some stressful life event, the latent infection may come alive. Or a person may be bitten a 2nd or third time, and then get REALLY sick.

    If my family were as sick as yours, I would open my mind to this important possibility.

    Please read this important information...symptom list pages 9-11, coinfection symptom info pages 22-27......





    Lyme testing is unreliable. All my lyme tests were officially negative and I have lyme. This same thing has happened to MANY others.

    Lyme is a clinical diagnosis based on history and symptoms, not a lab test.

    I urge you to also go to lymenet.org....click on flash discussion.....sign up for free......go to the very active Medical Questions board......and post your questions.....and read posts......your story will sound familiar to many there.

    In my opinion, all of your sick family members should seek the help and eval of a good Lyme literate MD...who can be found by posting on the Seeking a Doctor board on lymenet.org.

    Please don't make the same mistake I did.
  8. Nanie46

    Nanie46 Moderator

    I totally agree with Chaps!!!! I thought my illness was caused by a virus for 21 years and found out 1 yr ago it was bacterial ......lyme!!!

    Please read my response above to nah.stacey.

    Please go to the links there and read the symptom info.

    You were bitten on a nature walk and had bullseye rashes!!!!!!!!!!!!! That IS lyme!!!!!!

    Ticks usually carry more than just borrelia burgdorferi (lyme)...they often transmit babesia, bartonella, ehrlichia, rocky mt spotted fever and others. Most people have a combo of those infections.

    Please go to lymenet.org as directed in my response to nah.stacey.

    It seems like your answers are staring you in the face!!!
    [This Message was Edited on 04/07/2010]
  9. sickofcfs

    sickofcfs New Member

    from a top-notch ME/CFS doctor. There are so many things PWCs can have -- probably because of an impaired immune system. Lyme is certainly a possibility, but you should also consider the many other possibilities.

    My daughter and I have been sick for 5 years and getting sicker every year. We were finally recently diagnosed with persistant HHV-6 by Dr Lerner. We've had noticeable improvement with Valcyte over the past 2 months. There's no way we'd have been given Valcyte without that diagnosis.

    In the same way, it's hard-to-impossible to get adequate Lyme treatment without seeing a LLMD. PCPs don't have anywhere near sufficient info on infections in ME/CFS.

    My husband is starting to show some symptoms, too, although he could be simply fatigued from doing far more than his fair share these past 5 years, poor guy. We'll get him tested by Dr Lerner if the symptoms persist much longer.

    All the testing is very pricey, but compared to the price of the future of a teen, or being house-/bedbound the rest of your life....

    I'm scared, too, about what will happen if my husband gets this DD. Fortunately, my daughter and I are seeing enough improvement in a relatively short time on Valcyte to make me feel that we can have near-normal lives by sometime in the next couple of years. Without that, I'd be very worried, so I can empathize with your concern.

  10. AuntTammie

    AuntTammie New Member

    I just wanted to send you some hugs {{{{{ hugs }}}}}

    I will be keeping you & your family in my prayers.....wish I could say or do more.
  11. nah.stacey

    nah.stacey Member

    Thank you all for your thoughts and concern.

    It's not Lyme, tested very negative before our Fibro and Fatigue Ctr. was run out on a rail.

    The Dr. there was going to treat it as Lyme anyway but never got the chance. The F & F Center was shut down by a league of Dr.'s here. I don't know exactly who shut them down other than when I went to a Dr. at a local hospital for Vit D chk (what kind of Dr.? brain fog is blocking it). He said that they were a bunch a quwacks, but then again, this Dr. also told me there was no such thing as FM/CFS and to just get a grip. His bedside manner was noticeably absent, and so was he next time I went for a Vit D. check.

    Husband absolutely convinced he has this now and he was sooooooo hard to convince I had it in the beginning, that truly created a rough time for him, he couldn't understand why I was sick all the time. He knew I wasn't a lazy person, thought I was depressed for the first few years, (THANK YOU MEDICAL COMMUNITY). Now he knows how it feels, which breaks my heart. I wouldn't wish this DD on my worst enemy, ok maybe my worst enemy, but never one I love.

    Thanks Aunt Tammie, hadn't heard you on here for a bit, thank you always for your kindness.

    Thanks all again,