.. my husband and I both have CFS....is there ANYONE in the same boat..

Discussion in 'Fibromyalgia Main Forum' started by deadtired, Feb 25, 2010.

  1. deadtired

    deadtired Member

    Once again I am feeling like my husband and I are the weird outsiders here. I hear often from posters how healthy their spouses are. Also seems to strengthen the positions that the disease is inherited (genetically) as the main cause , not through some blood borne retrovirus transmission. I am wondering how just how rare our situation is...anyone else have spouse will with CFS?
  2. Juloo

    Juloo Member

    My husband does not have CFS/FM as I do. I am happy to be fairly high-functioning after several years of working on various parts of this, although I'm not completely out of the woods. My husband has been fairly healthy. The worse time for us as a couple were when he came down with Lyme about three years ago. I knew he had it before he did (he wasn't raised in a part of the country that knows much about Lyme -- the dinner-plate-size bull's-eye rash was a pretty good give-away after a vacation in Massachusetts. My CFS/FM symptoms started to get worse as well. We ended up both being on long-term antibiotics, and he pulled out of it after several months. My worsened symptoms had improved by about nine months.

    One of the things I remember most about this time is going into the bedroom after my husband had come in from work and finding him on the bed. He told me how exhausted he felt, and I told him that I understood. Then he said, "YOU'VE never felt ANYTHING like this kind before." At that time I'd been dealing with CFS/FM for about seven years already.

    I tease him about it now (he doesn't remember saying it), but I remember being really scared when I realize that my strong husband -- the person who was so good about caring for me at my worst -- wasn't able to take care of himself. What would become of us? If neither of us could work, how could we exist without insurance? If something happened to us, who would take care of our son? Did we have any kind of future at all?

    I hope that you get some responses here. There's just so much that isn't known. Are we risking our spouse's health? If CFS is transmittable, why do some exhibit symptoms and some not? Anyway, there are a lot of unanswered questions for me.
  3. Nanie46

    Nanie46 Moderator

    It is very possible that you and your husband could have chronic borrelia burgdorferi infections along with coinfections like babesia, bartonella and ehrlichia.

    Your chronic fatigue has a CAUSE and you need to find it in order to have a chance of recovering.

    Please read the symptom list on pages 9-11...and coinfection info pages 22-27....



    Many other people on this board have made this same discovery.
  4. deadtired

    deadtired Member

    It is a tough situation. At times I like to think there is a one positive aspect.. we can be a mirror to each other, and we each understand what the other is going through. But naturally it would be better if one of us was well. Having five children and both of us seriously ill back in 1988, we experienced all those fears you mention ...fearing that neither of us could work, . ....medical bills....children ill and trying to attend to their needs physical and educational. My husband incredulously carried on with work ,ultimately working for himself in business. Having a wife and children to support was the big motivator, fear was the big motivator. I am hugely grateful that he has been able to persevere in that arena. But we are so sick of being sick. We both do our part in taking care of each other but my husband is ultimately the stronger one, although no less sick than me> I am truly hoping that the research will start answering these questions..thank you for sharing,
  5. deadtired

    deadtired Member

    Nanie46, thank you for the info on the lyme. I just read over it all . We have about 95 percent of the symptoms mentioned at one time or another. I was tested for lyme approx. 20 years ago. The test was negative. Now I've read that those tests are often false negative! That angers me as there could be a good chance that we have lyme. Early in marriage lived out in country with lots of deer and high grasses. Have had rashes on and off and our children too. But I trusted the darn test. I plan on getting tested again now.
    Can you suggest where I can get an appropriate test? Thank you for your help.
  6. victoria

    victoria New Member

    Nanie's right...
    try going to lyme net flash discussion there is a place there to ask for referrals to "Lyme Literate MDs". It is how I found my son's doctor. Also there is a Lyme board here (Look up in the upper right hand corner where it says, "Message Boards"), the top stickies have a lot of info in them with sites to look at for info.

    My son at 16-17 got the exact physical symptoms as I had; I'd already figured out I had 'something like lyme' (I later found a positive test from 2001 in my records that nobody told me about), so when the blood tests showed no reason for his unrelenting fatigue, loss of weight, pain all over, low BP and low pulse rate, poor memory, etc.,

    I took him to the nearest best LLMD who was 200 miles away. My son was so ill he was CDC positive 2X 6 months apart. Take care, tho, not to be told there is no way you have Lyme if the iGenex Western Blot (the best lab) doesn't show positive to the CDC's rules as they only apply to tracking and surveillance requirements.

    Even the CDC says it is a CLINICAL DIAGNOSIS, no test is very reliable. Plus ticks carry a bunch of other stealth pathogens that are also very good at hiding out in the body, such as bartonella, babesiosis, & ehrlichiosis to name but a few.

    My DH also has signs/symptoms of it, but has never been as ill. I believe it is a matter of genetically susceptible. There are people walking around with it who have no symptoms.

    So glad to hear you're looking into this!

    all the best,

  7. deadtired

    deadtired Member

    I plan to follow up as you have suggested. I will certainly post my results when I get them. Looking back I remember seeing a tv program about people with lyme and their poor children with infections even at birth. It sure fit my situation. Our family doctor scoffed at my wanting a test. Saying something like lyme wasn't around our area. Now I am wondering if the lyme treatments help after 20 plus years of being sick...worth a try and nothing to lose for sure. Thank you for your help, Nancy
  8. Nanie46

    Nanie46 Moderator


    Victoria is right.

    You can get a western blot through Igenex lab in CA, test #188 and #189.


    But, it is VERY IMPORTANT that you remember that an officially CDC negative result does not mean that you do not have lyme. It means your result is not reportable to the CDC...that's it.

    My result is CDC negative and I have lyme...along with many others on lymenet.org.

    You are really just looking for clues that can help. You MUST NOT depend on the test for the last word!!

    As Victoria said, go to lymenet and post on the Medical Questions board and Seeking a Doctor board, among others.

    It takes a Lyme Literate MD (LLMD) to really properly evaluate you for lyme and coinfections like babesia, bartonella and ehrlichia.

    99% of Dr's do not know how to recognize, diagnose or treat chronic lyme and coinfections....that it why so many of us have suffered for years!!
  9. RunningAntelope

    RunningAntelope New Member

    I have one sibling with fibromyalgia, fatigue, and a chronic inflammatory process and another with just chronic fatigue, but no immune dysfunction or abnormal brain function per se. On the other hand, when I was at my sickest, I believe I gave this to my now wife, who developed the illness after exposure to me AND while under extreme duress studying for the bar. She was extremely ill for about four years, but has since recovered to about 90 or 95%. I have recovered to about 70%. It is entirely plausible that my brother contracted this from me or vice versa, since we lived in close proximity for quite some time.

    There may be both a genotypic and psychoneuroimmunological aspect to this disease, but based on the early destruction to my immune system and that of my wife, it had the tell-tale signature of a retrovirus... As to why my brother hasn't fully developed (he's been tested on Cheney's echo, as has my wife -- both abnormal and "oxygen toxic" but not fitting the "mold" of a classic CFIDS patient) the illness is beyond me. My sister has sabotaged herself via diet and living conditions, so she's another story altogether. I was born premature and jaundiced, almost didn't make it out of the hospital, was never breast fed with my mother's milk, and was a competitive distance runner who ran 90-100 miles per week in college, suffering from a bout of mono that "came back on me" after I resumed training too quickly, along with undiagnosed iron depletion. My wife was also fed formula. Just thinking out loud here. I've also always lived with and around cats, which may be something to consider, both in terms of a virus jumping species and in terms of having your spouse and PETS treated for coinfection.

    So, while no one knows the etiology of these illnesses, my own "gut" instinct is that a combination of trauma and poor living (think a childhood of processed, dead food, exposure to 20th and 21st century electromagnetic radiation -- tv, microwave, computer, cell phone, etc, and environmental degradation) paves the way for an infectious pathogen to overwhelm the body's innate response system. Genetics may play a part but don't explain contagion per se. But it definitely hit after the "flu that never went away," and this was three-plus years after mono.

    [This Message was Edited on 02/27/2010]
  10. sickofcfs

    sickofcfs New Member

    I know someone with several family members with Lyme. She speaks very highly of Dr Crist and his knowledge in diagnosing and treating Lyme. According to her, he knows which tests to order so that you get legitimate results. I have no personal knowledge of this doctor, but I'll pass on the link for your info.
  11. Juloo

    Juloo Member

    A Lyme-literate doctor should treat on tests results AND symptoms, not just test results.

    Remember the dinner-plate-size bulls-eye rash I mentioned? My husband tested NEGATIVE for Lyme. I've never had the rash and had 4 positives and 1 indeterminate (if the indeterminate had been positive, the test would have been considered positive).

    It should be interesting to note that had a physician seen my husband's rash, he would have been considered positive for Lyme without any test at all. But it meant nothing to TELL the physician that he'd had the rash if the physician didn't see it himself.

    My husband and I were both tested through Igenex -- and the practitioner who ordered the test had Lyme herself.

  12. deadtired

    deadtired Member

    You mentioned some interesting similarities that you have with my husband and I . Being born in the 50's neither of us was breastfed either. I was low birth weight (5 lbs.) and my mothers labor induced. My husband also had history of mono that he claimed he had at 10 years of age, only to "come back" his first year of college when he had to drop out for the semester, and then 10 years later in'88 we both succumbed to something mono-like, as my husband said it was similar to what he felt when he had mono. Neither of us have siblings with anything resembling this illness, however my brother, who was around us at the time we came down with the mono-like illness caught it also and ended up in the hospital his glands were so swollen. My husband and I didn't get over it, he apparantly did. Recently hes had a strange onslaught of pain in his arms and I sure hope its not going to go our route. I am wondering your age, as one of our theories is the viral contamination that occurred in the polio vaccines during the 50's and early 60's. We have always wondered if those horrible virus's( monkey ) slowly eroded our immune system, leaving us with a deficient one enabling the epstein barr virus to erupt to mono (just about everyone gets epstein barr, however it usually does not got into mono.. before the 50's it seldom caused mono) . That would explain siblings being similary affected, and even passing to spouse route of contagion. I agree with you on the many environmental onslaughts that we have all been exposed to as well as stress, but you then you realize all the very healthy people around , and they go through the stress and are in the same environment but they aren't sick like us. My husband had lots of hyper activity (couldn't sit down and relax easily) and surely wore himself ragged at times but I can't say that for myself. And our diets have always been good. There are so many scenarios to this illness. Couples sick, no children sick. Children sick, parents well. Parents sick, children sick. Siblings sick. Hope someday we get it all figured out...
  13. ladybugmandy

    ladybugmandy Member

    be sure to get the XMRV serology test for both you and your husband when it comes out. dont think it will be too long now.

  14. Meg1710

    Meg1710 New Member

    I have absolutely no idea whether I will test positive for XMRV eventually.

    Our adopted son though nowadays has continuous coughs and chest infections, whereas when he was young he never got sick. He was the healthiest little boy. I think he should be tested for Mycoplasmas and other viruses, as a terrible cough with raised Myco Pn., CMV and EBV titres was how all my issues with M.E./Fibromyalgia started to manifest at the end of 2005.

    My husband has mega sinus problems also these days. So between each of us we have our challenges. If I test positive for XMRV I will certainly encourage my hubby and son to be tested too!
  15. RunningAntelope

    RunningAntelope New Member

    I am in my early 40s. Came down with the illness in 1992. I don't rule out the vaccine theory either, as vaccines were cultured using mice cells as well, and if this XMRV finding endures and/or corroborates the "c-type" mouse retroviral finding some 20 years ago now, it appears it jumped species from a mouse. Researchers were also hitting murine leukemia virus in the late 70s, I believe with radiation, so God only knows how this was unleashed. As far as negative findings, I believe it's because they are only using PCR to test blood, and this virus is very good at latency, meaning that it has to be tested multiple times using multiple means throughout the replicative cycle to find it. WPI has been much more thorough in this regard than many of the non-confirmations coming from overseas. Whatever hit me in 1992, it did so much damage to my immune system initially and quickly, that it had the tell-tale signs of a retrovirus. But it could've been other opportunistic pathogens "piling on," like mycoplasma pneumonia.

    I just believe that the formula, the poor diets, the environmental degradation, the praying to the God of science and allopathic medicine (is it really such a good idea to keep artificially inducing immune hypervigilance, one shot right after the other?) have all contributed in some way in undermining the innate immune system. I believe they are finding XMRV in autism now as well, and that would explain the vaccine-link... not that it came from a vaccine but that unwittingly and unknowingly coaxing the virus out of hiding in the immune system cells when they are rapidly replicating in the wake of vaccinations may be occurring (which is why so many parents report that their kids seem to develop autism in the wake of vaccination). Remember, the parallels between autism and CFIDS in terms of the brain, gut, and immune system are startling.

    Time will tell. Certainly, there is not yet overwhelming evidence, just speculation. I do worry about the politics of this disease and the ramifications that may be ahead of us.
  16. deadtired

    deadtired Member

    Thank you , I have a lot of good information as to how to get tested, finding a LLMD. I won't be surprised if my husband and I have the lyme going as well as the XMRV considering how bad we feel. Just hope after finding whats ailing us there will be something that can be done to fix it. Has your treatment for lyme helped you?
  17. deadtired

    deadtired Member

    I am equipped now with lots of good info now...I'm a little angry with myself for not pursuing this earlier but like I said, I had received a negative 20 years ago and let that be. I also was so bent on believing this was something viral (not that virus's can be part of the picture) however I noticed after receiving tons of antibiotics after a hospitalization I felt so much better for a time. They must have killed something off and it couldn't have been viral. THanks again Nancy
  18. deadtired

    deadtired Member

    I will check into Dr. Crist, thank you!
  19. deadtired

    deadtired Member

    Hi , I am certainly going to be tested for XMRV... whenever it is easily available and accurate...Nancy
  20. deadtired

    deadtired Member

    I also noticed the coincidence of mice cells being used for vaccines (not sure in what way or how they would have contaminated them, only know that live vaccines for polio harbored live simian viruses)... what do you meant by research ing "hitting" murine leukemia virus...I am curious. I am presently reading about Henrietta Flack, it is a really interesting story about the woman who's cancer cells were used around the world (HeLa)...there was an experiment where they mixed her cells with a mouses's and ended up with a mouse/human hybrid.. it was shocking and sickening to many at the time. I do know they found the Hela cells were eventually contaminating many cell cultures....and scientists just kept on doing their thing whatever their studies regardless of the contaminations...also wonder if vaccines are good medicine, especially after learning just how they are made, whats in them and the nature they are given (shots into musche) and what they do to the immune system. They are given indiscriminately and it is obvious that there are those who have complications from them (I am thinking Gulf War Syndrome, austism). The doll Raggedy Ann and the stories were from a father whose daughter was chronically ill after a smallpox vaccination. You may have a point about a virus being coaxed out of our immune system...all very interesting takes on this!

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