New here and have some questions

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Connie63, Sep 20, 2013.

  1. Connie63

    Connie63 Member

    Hi, I'm new here. I have some questions. If you don't want to read a little of my history, skip down a few paragraphs.

    I'm feeling so sick today that I stayed in bed all day reading discussions. It's been very interesting. I've been sick for 40 years, but was just correctly diagnosed this past spring. I got sick when I was 9 years old. My pediatrician thought it was Lupus though I had negative tests. After some bloodwork when I was 17, I was told it was Lupus. My mom had been told by her Dr that she had Lupus in the mid 70s, due to a high ANA.

    During most of my adult life, I didn't have health insurance and my kids became a priority as all 3 of them have physical and mental illnesses. My mom and I both lived our lives as though we had Lupus. I made sure I rested after stressful times and whenever I didn't feel well. I took vitamins and stayed out of the sun. My mother did those things too, but she also took prednisone. Rhuematologists would tell her she didn't have Lupus, but they could never tell her what it was. She was sure she did and was able to convince her Dr to perscribe prednisone for her. I believe it gave her the energy to work part time and have a life until her body started the inevitable breakdown of years of steroids. (fractured bones in her back, multible infections, etc).

    Unlike my parents, my husband and I didn't have insurance, so I just rested when I needed too. In 2009, my husband fell and suffered a brain injury. That meant that we had medical assitance for a while. I found out during that time that the test used to diagnos me with Lupus was no longer considered accurate. I spent a couple of years wondering what it could be until last year when my fantastic PCP said I think you have CFS. In the spring of this year, a rhuematologist diagnosed me with CFS and my husband with FM. My husband had symptoms of FM before the brain injury but it's been so much worse since then. The Rhuematologist said there is nothing he can do to help us.

    I'm in the middle of a flare up of CFS and my husband is in the middle of a FM flare. He has severe fatigue which led our PCP to think maybe he has CFS too. Either way, we are struggling to keep it all together. We are lucky enough to have a great marriage. It's the financial issues that are so tough.

    *So one of my questions is that I have always described the shaking sensation I sometimes feel inside as being like when you almost have a car accident and you get a surge of adrenaline. It's the sensation you get after that. Or it's like you've had to much caffeine. So is that likely an actual adrenaline issue?

    * I'm also sure that I have orthostatic intolerance. I cannot stand for long without becoming very fatigued and light headed. I have increased my salt intake. Any other suggestions?

    *I am always cold but I will suddenly become very hot and my cheeks get very red. If I take my temperature it'll be 99.5-100.5. Is that just temperature dysregulation?

    * I am pretty tough. I'm the primary care taker of our adult Autistic son, all 3 of our kids have bipolar. One has narcolepsy. Our youngest has had 8 surgeries and needs another one. My husband has muliple medical problems besides the brain injury and the FM. And I've been sick since I was 9 so I'm used to being ill. Yet there are moments when I feel soo ill that I feel scared. It's like I know this is CFS but sometimes I feel so sick it crosses my mind to go to the er. Obviously, they wouldn't be able to do a thing. So I tough it out (while laying down, of course) ;-) I guess the question is, is that how everyone feels?

    Sorry this is long. I'm glad to have found this group. Connie
  2. Nanie46

    Nanie46 Moderator

    Hi Connie,

    Welcome to the ProHealth forum.

    I'm sorry to hear of all the suffering/illness that you and your family have experienced.

    I have found from my own experience that there is always a root cause of our symptoms. Often times, the root cause is infectious....and frequently more than one infection. Unfortunately, Dr's do not always look for the root cause.

    I found out after 21 years, that the root cause of my FM, fatigue, insomnia, brain fog, etc were tick-borne infections. Testing for Lyme disease is so unreliable that many people who have Lyme disease (a bacterial infection that can spread throughout the body and affect every body system) have only had negative Lyme test results.

    Please read this information and see if it sounds like it could apply to you and your husband. Lyme Disease can also be passed from mother to fetus/infant. It can affect different people differently. There is a good symptom list in the 2nd and 4th links.

    People infected with Lyme Disease (Borrelia burgdorferi) often have other tick-borne infections too, that can complicate the illness. The symptoms you describe sound like they could all be from one or another infection such as Lyme, Babesia, Bartonella, Protomyxzoa Rheumatica, etc.

    Many people with Lyme and other tick-borne infections have been misdiagnosed with Lupus, RA, MS, and many other diagnoses. Again, finding the root cause is key.

    People who have been sick with these infections for years often have severe hormone dysregulation, adenal fatigue, problems with chronic candida, leaky gut and lots of other gut issues, food sensitivities, and much more. Many have developed autoimmune conditions from years of chronic inflammation and other issues. All of this complicates the illness.

    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.ilads.org/lyme_disease/about_lyme.html


    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Please watch this youtube video:




    Please watch this important free documentary (which is very eye-opening) about the unrecognized epidemic of Lyme Disease, called "Under Our Skin" which is found in the link below:

    http://www.hulu.com/watch/268761


    I wish you and all of your family the best.
  3. mbofov

    mbofov Active Member

    Hi Connie - I agree with Nanie46, do look into the possibility of lyme. She's given you excellent links to check out and the documentary, Under Our Skin, is also very good.

    I might start there and if that doesn't help, then find an integrative medicine doctor or a naturopath. Regular doctors are helpless when it comes to CFS. A good link for finding an IM doctor is acam.org - there's a search feature at the top of the page under Health Resources where you can find practitioners in your area. One other suggestion - I was helped enormously by a chiropractor who does muscle testing. He found my weak adrenals and helped me with them using an adrenal glandular product, he helped sort out several different digestive issues, and other things. You can just call chiropractors and see if they do muscle testing/kinesiology. You can also go to the Standard Process website - they make nutritional supplements used by chiros - and they will give you the names of ones in your area who use their products.

    Good luck -

    Mary
  4. Nanie46

    Nanie46 Moderator

  5. Connie63

    Connie63 Member

    Thank you for the replies!

    I've been aware of Lyme disease for 20 years as I had a friend who had this back then. Although it's possible that my husband who hiked, camped and hunted as a child and teen could have Lyme disease, it's unlikely that I do. I didn't do any of those things and I lived in a more city area. My mom had worked as an assistant to a Dr before I was born so my mom would have been alarmed if I had a bullseye rash. (I know that a rash doesn't occur 100% of the time when bitten.) The same year that I had my onset of CFS symptoms, (age 9), I had a staph infection in my kidneys and other issues. No one can remember what came first, but I was in the hospital a couple of times.

    My mom had mono when she was 18 and said she never felt the same after that, though she was not very ill until 12 years later after a bout of pneumonia. She had me only 3 years after having had mono. I've wondered if she passed something on to me.

    It would be wonderful to see specialists and have Lyme tests, etc, but we do not have health insurance and we live in Pennsylvania where the Governor doesn't want to participate in the ACA. We are waiting to see what happens. We need insurance so desperately. I certainly would check out the whole Lyme thing if we could. For now, we can only treat symptoms with the Drs in the medical group that we see. They have a hardship program that allows us to see them for free. Thank goodness for that.

    I will check out the link for Drs that you suggested in case we are able to get insurance. Despite living in Pittsburgh, I have been unable so far to find any Drs who specialize in CFS through all of the sources I've tried. Here's hoping your link will have something.

    We had several years where we had one tragedy after another. One of our sons was diagnosed with Autism and bipolar and was hospitalized in a psych hospital 5 times starting when he was only 8. Our youngest son was born with bilateral clubfeet and had 8 surgeries starting at just 4 months old and was diagnosed with bipolar and hospitalized for suicidal intent at age 12. Our oldest child, our daughter, was diagnosed with bipolar and was hospitalized twice after suicide attempts. Mu husband's brother (24 yrs old) and father died of cancer. There's a lot more, but the biggest stress was our Autistic son who became very violent during his teens. We had in-home theraputic help which was great, but stressful. Our son had to be held down on the floor daily for his and everyone's protection when he was raging.

    Anyway, I think the crazy stress did a lot of damage. Our PCP says the stress of caring for our kids really damaged our health in so many ways. It's still stressful taking care of our kids now. I wonder if the Adrenal fatigue symptoms we experience now are from that stress.

    I will watch the video with my husband. I'm sure it'll be interesting. Thank you for your help!
  6. Connie63

    Connie63 Member

    By the way, Nanie46. The symptoms I asked about started about 15 years after I got sick. I don't remember having them early on. When I got sick at age 9, I had very classic CFS complaints. You know, extreme fatigue, bad sore throat, low grade fever, joint pain, post exersional malaise, etc. The other symptoms seemed to come in my mid 20s.
  7. Nanie46

    Nanie46 Moderator

    Hi Connie,

    I also live in Pennsylvania. I do have health insurance, although it is not of any help in treating chronic lyme disease and other tick-borne diseases anyway.

    I had to pay out of pocket for my treatment by a Lyme literate MD (LLMD) who follows the ILADS guidelines instead of the IDSA guidelines and treats long-term. Most LLMD's do not participate with insurance companies. It was expensive, but I was so sick that I knew I did not have any choice. I am at least 80% better now.

    There is a good chance that you have chronic infections....probably more than one infection, whether it is Lyme, or a virus, or mycoplasma, or Bartonella or Babesia or Protomyxzoa Rheumatica or many others.

    My LLMD's entire family had Lyme, Babesia, and Bartonella. Their 2 sons were very sick also, and 1 especially had severe mental health issues, even suicidal intentions because of the infections, especially Babesia. My LLMD used to tell me how Babesia made him so extremely anxious and depressed.

    Some LLMD believe that Lyme is also transmitted by mosquitoes, and other biting insects, and also sexually transmitted.

    Bartonella is transmitted by fleas, cats, ticks, etc. and is a very serious and common infection that can be missed.

    These infections can also be transmitted by blood transfusion. I know someone who got Babesia from a blood transfusion.

    Protomyxzoa Rheumatica is an infection that was discovered more recently. It has been found to be transmitted by mosquitoes, although many Lyme patients also have this infection, including my adult nephew. Testing is done through Fry Labs in AZ. Dr Stephen Fry discovered Protomyxzoa Rheumatica.

    Pets often bring ticks into people's homes.

    It is very possible that your Mom passed something on to you, it's hard to say.

    If you read the info and watch the documentary and videos, you will see that conventional medicine Drs, such as any you would find who would take insurance....including Infectious Disease Drs, are not Lyme literate. They follow the IDSA and CDC guidelines for diagnosis and treatment of Lyme, and those are short term and inadequate.

    It is interesting to note that some of the conditions that Lyme disease can mimic are autism and bipolar disorder. If you would like any more info, links, etc, just let me know. Read the info presented by Dr Chandra in this link from betterhealthguy's site : http://www.betterhealthguy.com/inte...tYXRpY2EiLCJwcm90b215eHpvYSByaGV1bWF0aWNhIl0=

    There is tons of good info in that link. In fact, if you go to www.betterhealthguy.com, you will find a huge amount of info. Scott Foreman, is "betterhealthguy, and he has lyme and coinfections. He goes to many conferences, writes summaries of the info presented and posts them on his site. You can find the conference info on his page by scrolling over the topic "Lyme" and then clicking on conferences. If you scroll over the topic "Topics" you can click on many different things such as CFS, mycoplasma, heavy metals, etc.

    Also complicating the illness for children and adults are heavy metals, electromagnetic frequencies such as WiFi, smart meters and smartphones. Parasitic infections are also much more common than people think. Not all parasites are intestinal. Some are parasitic infections of red blood cells, lungs, brain, heart, etc.

    Another complicating factor can be MTHFR genetic mutations which about 50% of the population has. These mutations make it hard for people to properly detoxify because the methylation pathway is disturbed. You can read more about that at www.mthfr.net and here: http://www.dearpharmacist.com/2013/08/08/2394/

    There is nothing simple about figuring out all the factors contributing to chronic illness. It has been my experience and that of others I know, that regular Dr's just are not educated about all of this.

    It seems that Integrative Medicine Dr's Naturopathic Dr's, Lyme literate MD's and ND's think outside the box, unlike conventional medicine.

    I sure hope and pray that your entire family can get some real answers as to the root causes of all of your illnesses and get better.

    You said, "You know, extreme fatigue, bad sore throat, low grade fever, joint pain, post exersional malaise, etc. The other symptoms seemed to come in my mid 20s."

    Those are also classic symptoms of tick-borne infections, mosquito-borne infections and flea/cat/tick borne infections.
  8. Connie63

    Connie63 Member

    With my husband so ill, we can barely afford groceries and utilities. There is no money for vitamins or Drs or tests.

    My poor children come by their mental illness through genetics. Both sides of our families have mental illness (it goes back several generations) that we weren't aware of before we had kids.

    I'm not sure if I understand you correctly or not, but is it your assertion that CFS and FM is caused by insect bites and infections they cause? I feel like most of the research I've done suggests some kind of possible viral cause for CFS and that there is likely a percentage of people diagnosed with CFS who actually have Lyme. Not that almost everyone who has CFS or FM actually has Lyme or some other insect caused infection. Did I misunderstand you? Or is that what you're saying?
  9. Nanie46

    Nanie46 Moderator

    Connie,

    I believe that most people who have been diagnosed with CFS and FM, actually have an infectious cause to their illness that has not been uncovered. I believe that most people have more than one chronic infection. Many of these infections are spread by various vectors like ticks, mosquitoes, fleas, etc. These infections can range from a variety of bacterial infections, viruses, parasitic infections, etc.

    There is a famous LLMD in NY, Dr H, who calls it "MSIDS" or "Multi-Systemic Infectious Disease Syndrome".

    Then, over time, all those other factors complicate the illness.
  10. Mikie

    Mikie Moderator

    Hi, Connie, I am so very sorry for all the illness in your family.

    One of the most difficult things about our conditions is the inability to get correct diagnoses. So many conditions have the same symptoms. Tests can be very unreliable. I think we have to do our own research; fortunately, with the internet, it is so much easier to do this today.

    My CFIDS/ME was triggered by a mycoplasma infection 23 years ago. There may be a genetic trait or traits which predispose us to these illnesses and all it takes is a trigger to set them off. Triggers can be stress, infections or trauma. With Lyme, it's infection from bacteria carried by ticks. I believe most of us carry chronic infections which may be difficult to detect once they become chronic and are no longer active. I also do not believe we can heal until we address our infections.

    Our central nervous systems are almost always affected by our conditions which can cause all kinds of symptoms. This may account for some of what you are experiencing.

    If you can find a doc who is willing to see you pro bono, it would be great if he or she is well versed in our illnesses. In the meantime, do your own research. I wish you the best.

    Love, Mikie
  11. IanH

    IanH Active Member

    Hi Connie, I am very sorry to hear that both you and your husband have a disability. Like yourselves both my wife and I have ME/CFS, along with our daughter and grandson. While I would concur with Nanie46 that Lyme should be considered as the symptoms of Lyme are very similar. My wife and I do not have Lyme disease.

    The difference between FM and ME/CFS is very blurred, in fact many people have both. Remember that these are just descriptions of symptoms and not necessarily distinct illnesses.

    The symptoms you have listed are very common in ME/CFS.

    Firstly the "shaking" or sometimes called nerve vibration is probably due to what is known as neuropathy where the nerves in the periphery are "excited" and cause the sensation of "parkinsonism". Some people do actually shake but most often it is a sensation. It isn't directly related to adrenalin (epinephrine) but may be more related to elevated levels of glutamate. It commonly increases when eating, when exposed to environmental toxins such as solvents, some detergents and insecticides, when under psychological stress and in the early morning after waking. Many people have found that "meditation" helps to reduce it but most just learn to live with it as it comes a goes. Some people have found that these supplements can reduce it too: vitamin B12 (taken as a sublingual tablet 1mg-2mg), magnesium (taken as the citrate, glycinate or threonate, but not the aspartate, 400mg-600mg). Some drugs do also reduce this, such as the tricyclics eg, nortryptiline and also the SSRI's however you probably would not take these to reduce "tremor" as their side-effects are often intolerable.

    Postural orthostatic tachycardia syndrome is very very common in ME/CFS and many (but not all) have low blood pressure.

    Again the hot cold sensations are common with people having a sort of Raynauds syndrome where the hands get very hot however actual body temperature dysregulation is not so common but is usually associated with some thyroid changes due to NMDA (n-methyl-d-aspartate) irregularities in the HPA (Hypothalamic-Pituitary-Adrenal) network. Some people have reported these temperature and flushing changes to occur like clockwork at a certain time of the day, like 4'Oclock.


    You haven't mentioned other classic symptoms like post-exertional malaise, diarrhea and pain but I am assuming these are also both of your symptoms given the diagnosis.

    There are many theories as to what causes ME/CFS but the most dominant is that it is an immune system disorder (maybe "autoimmune") affecting the nervous system. However it is undoubtedly a real disease and not some other illness masquerading as ME/CFS. Obviously the actual cause/trigger is not known but probably varies depending on the person. So little is known about our immune system's vast and complex makeup but increasingly it is becoming clear that it is the immune system itself that causes so many illnesses, particularly of the nervous system. Sadly there are no drug cures and even what is on the horizon is not very appetizing at all.

    I work in a university clinic and suffer from ME/CFS but also my wife and daughter and grandson have ME/CFS. Overall the most helpful treatments in the long term have been supplements even though I have had a number of different drugs.

    While infection is a possible cause of ME/CFS it is only one of many possible causes. There is no doubt that some people with ME/CFS test positive for some infections, viral, bacterial, fungal and mycoplasma. However there is no evidence that those infections caused the ME/CFS. Sometimes the infections are imbalances in normally regulated micro-organisms that live with us quite healthily.

    While some of the immunological markers do indicate "infectious" processes they do not tell us that those infectious processes were the initiator of the illness. We do know that the gut microbiome is intricately involved in the state of the nervous system and brain functions. Even small changes in the gut balance can result in worsening ME/CFS symptoms within hours or days. Similarly giving probiotics and other gut healing preparations such as bovine colostrum can improve symptoms and there have been reports that antibiotics make some people with ME/CFS feel better (for a while).

    There is plenty of animal studies to show how the gut balance and intestinal permeability is a cause of emotional changes, fatigue and pain sensitivity. There is equally plenty of animal studies that tell us that the corollary is true. Psychological stress causes a disturbance in the gut balance and an increase in intestinal permeability. This means that some gram negative bacterial LPS (lipopolysaccharides) can leak into the blood stream and cause a rise in various pro-inflammatory cytokines. This is why chronic stressful states always show a raised pro-inflammatory cytokine network. (In short stress in inflammatory). These cytokines then affect the function of some key parts of our brain, the hypothalamus, the amygdala, the pituitary gland and in turn the adrenals. Of course we do know that stress exacerbates all neurological illness symptoms. So, while chronic stress causes "infection" and inflammation due to infectious processes we cannot say that ME/CFS is caused by chronic stress.

    There is a lot to read on this site and I would suggest looking up info on mitochondrial support, anti-inflammatory supplements and the digestive tract support.

    Probiotics are a current focus in lots of neurological diseases similar to ME/CFS and FM.
    I mentioned before that gut microbiome and gut permeability together influence the nervous system. We know that germ free mice have a very exaggerated response to stress but when given bacteria from another mouse cope with the stress better. Also when given probiotics they respond better to stress. (And we know this works via TLR4, an immune system regulator). In fact mice given probiotics behave as if they had been given valium. We also know that early life antibiotics in children cause gut hypersensitivity and gut permeability.

    Recently it has been shown that the lactobacillus strains cause changes in cortical, hippocampal, amygdala GABA receptors via the vagus nerve. Brain imaging studies show the clear effects of probiotics within hours. Hence probiotics alter brain function.

    In particular it is important to keep your vitamin B12 levels up.

    We know form our patients records and diaries that gut function affects ME symptoms directly, so it is very important to manage your digestive tract throughout the course of this disease.

    Also read up on energy envelope and how to maintain it to minimize your "crashing".

    All the best.
  12. Connie63

    Connie63 Member

    Ian, I appreciate your response. I do have the classic symptoms, post exersional malaise, pain, headache, etc. I was just asking about some symptoms that are not typically listed in the lists you find of symptoms of CFS. Just curious about others experiences.

    I really do not have any gut issues. When I first got sick, I had some. I took probiotics back then. Since then, it hasn't been a problem.

    I consider myself "lucky" because I got sick when I was 9. I've never known any other way. I learned how to pace myself and take a break or quit an activity back when I was 14. (I'm 49 now.) So even though this is a new diagnosis for me, I've been living within it's confines for 40 years. The problem is there are times that I have no choice but to keep pushing, like when my Autistic son is raging.

    Though I have a low vit B level, I do not notice any change from the vit B injections.

    I understand that many with CFS or FM use supplements. I did use them for many years. One of the issues with my husband and myself being so sick is that there is no money for supplements anymore. That's one reason I was asking about others in our situation. The good part about us both being sick is we understand eachother. The bad part is the financial strain and the struggle to keep the house picked up.

    I will keep doing research. Thanks for the suggestions. Connie