Discussions By Condition: I cannot get a diagnosis.

Are ME / CFS / FM Actually Lyme's ?

Posted In: I cannot get a diagnosis. 18 Replies
  • Posted By: Anonymous
  • May 18, 2007
  • 10:09 PM

Many posts lately on the possibility of many conditions actually being ME.
In my education and research w lots of input from www.lymenet.com my conclusion is that many of these cases are actually Lyme.

There is a great poster and researcher on that site who was misdiagnosed with CFS and FM for about 15 years who when tested correctly was finally told she had Lyme. She now feels that about 90% of those diagnosed with FM and CFS actually have Lyme.

Lyme is a "great imitator" of many other diseases, and the ME being described here a lot recently also imitates many many diseases. Recent research is showing that Lyme comes in stages, and that MS, RA, ALS, polymyalgia rheumatica and more are stages of Lymes.

Accurate testing is done only thru Bowen Lab and Igenex Lab. Tests that many health prfessionals use are often very inaccurate and do not give reliable information. If one tests positive, it is suggested that a LLMD - Lyme Literate MD be found. You can access some info on that at the site mentioned above - how to find a LLMD.

How is ME tested for in England ? What exact tests are used by which labs. Would really like to know this info, please.

I would greatly appreciate input here on your thoughts / feelings / insights and more.

Thanks in advance
Ralph G., MT, DC

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18 Replies:

  • Ralph, basically ME is not tested for in the UK. The diagnosis is determined by ruling out other possible causes. To add to the confusion, you get psychologisers who preach that it is all in the mind. I suppose the answer to your theory might lie in the distribution of sufferers. You would perhaps expect fewer in urban environments where you are less likey to come across a tick. Lyme disease is less common in the UK than in the US (at least the diagnosis of it is less common). I have a feeling also that it is caused by a different bacteria.
    Anonymous 42,789 Replies Flag this Response
  • Thank you, Kenn. I used to have an internet buddy in the UK who had some great input on the ME disaster over there. She did say that many were told it was all in their head, as docs and psychologists often do not let themselves use the words "I don't know." So now I wonder how many would test positive for Lyme if the good tests were available and used. (Bowen Lab, Igenex Lab) And Lyme is not just tick borne. It has been around for about 3 million years and can be from many sources. There also appear to be different somewhat related bacteria in different areas, like North America and Europe.
    Anonymous 42,789 Replies Flag this Response
  • Ralph, it seems likely to me that ME could have an infectious cause in many instances, as patients describe the onset of symptoms following an illness. I think if it was Lyme's disease causing ME, then you might see more instances of chronic fatigue in areas where Lyme Disease is more prevalent. It would be hard to explain the greater frequency of ME in the female population also. It is worth checking out http://www.pophealthmetrics.com/content/2/1/1. That is not to say that many cases of Lyme's Disease are not going unidentified and are being put down to ME of course! I think the problem in the UK is not the availability of accurate testing, but the willingness of medical practitioners to recognise Lyme Disease as a differential diagnosis. The disease is generally recognised to be on the increase (due to global warming or whatever), although the identified instances run to only a few hundred per year (in fact, I know someone who contracted it although it took some time to reach a diagnosis). For some reason, Lyme disease is more prevalent in parts of Russia.
    Anonymous 42,789 Replies Flag this Response
  • the problem are the "stealth viruses" I am learning if all ME patients were tested for Lyme...most would be positive eventhough many were not bit by ticks...why??/...how??? there is much intertwining here... we need to put our heads, research, knowledge, symptoms and experiences together here The sum is equal to it's parts Please read last 5-6 pages of "It's a mystery until we solve it"--mommy cat there you will see many with sx of ME/Lyme/Lupus/MS/Fibromyalgia and many more Many have responded from many states Please help...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • PS...Thanks Ralph, by the way, for that info..mommy cat:D
    mommy cat 1,654 Replies Flag this Response
  • Thanks for your replies, mommy cat. Lyme's is not just from ticks. It can be found in all types of body fluids and thus transferred in many ways. And many people never get the classic"bulls-eye" rash. There is great info at www.lymenet.org
    Anonymous 42,789 Replies Flag this Response
  • Actually, my daughters FM, MS type symptoms turned out to be a congenital Chiari malformation in her brain that caused syringomyelia of her spine, so go figure. btw she tested positive on the Bowen lyme test, as does everyone, so glad I didn't stop there.
    Anonymous 42,789 Replies Flag this Response
  • Fauve,How old is your daughter? I would like to know more! Thanks!
    Anonymous 42,789 Replies Flag this Response
  • Fauve - apparently your daughter has both diagoses. They can coexist and it may be difficult to differentiate what may be shared. Where is your info from about everyone testing positive with Bowen testing ? This may be a distinct possibility as Lyme has existed for 100 million years and we have only existed for about 3 million. Infectious agents express themselves (reproduce and cause symptoms) when where they are living is a friendly place. This means the less healthy one is from other factors, such a poor digestion, the higher the chance is that the bug will express itself. It can be a viscous cycle and continue in a downward spiral. Thanks
    Anonymous 42,789 Replies Flag this Response
  • fauve, very interesting...I have a friend having ME symptoms...as well as many other people I know...you probably are aware... However, she called me 2 days ago and told her she had a congenital Chaiari malformation of her brain that caused syringomyelia of her spine. She is looking into a ME/CFS as many of her symptoms correlate. I'm sorry for your daughter, as I can relate to her. So glad I read your post...now I can tell my friend she's not the only one in the world...I had to tell her originally that I had never heard of this condition before. Thank you...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • fauve...please visit www.ncf-net.org under Research...you will find an article titled"New Virus found in CFIDS/MS/Epilepsy they are figuring out that a virus may be responsible for many neurologial diseases. there is scientific proof...with staggering numbers of MS patients whose cerebral spinal fluid was tested...as well as ME or CFS as we call it also Fibromyalgia myalgic Encephalomyelitisthere are connections... I know people are upset over all of my ME/CFS info...but it's there for a reason...actually, several Thanks for considering...trying to help...hope your daughter is well...and yourself...it's not easy. mommy cat
    mommy cat 1,654 Replies Flag this Response
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  • fauve...www.asap.org/2006/main-fight.html - 13k - Cached - More from this site here is a site I thought you might find interesting...relating to your daughter's symptoms Be Well...mommy cat
    mommy cat 1,654 Replies Flag this Response
  • Ralph, Sorry, meant to say she tested positive as most everyone with MS/FM type symptoms do - per Dr Whitaker of Bowen Lab - >>The Bowen Lab receives blood samples from all over the world. The patients who send their blood to Bowen have previously been diagnosed with conditions such as ALS, Alzheimer's, Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Bell's Palsy and more. Almost all of these patients test positive for Lyme using the Bowen Test. Some doctors and researchers feel that this means the test is inaccurate....too many positives. But others are beginning to realize that these findings are most likely representing the true proportions of this epidemic we are faced with. That it is not SARS, West Nile Virus and Anthrax we need to be worrying about, but rather the microbes such as mycoplasma, bartonella, babesia and borrelia burgdorferi that are already in our midst, spreading slowly but steadily throughout the population and causing untold suffering, disability and death. An interesting quote, eh?
    Anonymous 42,789 Replies Flag this Response
  • Actually, my daughters FM, MS type symptoms turned out to be a congenital Chiari malformation in her brain that caused syringomyelia of her spine, so go figure. btw she tested positive on the Bowen lyme test, as does everyone, so glad I didn't stop there.Dear Fauve:Did you ever take her for NAET? Also Reiki always helps children with Neurological conditions- even the ones who are born sick.So sorry, it sounds terrifying - Our prayers are with you.
    Eatafruit78 960 Replies Flag this Response
  • Thanks for tha ASAP link mommy cat - I was going to post it for Unregistered who wanted to learn more. My daughter should be okay - now that we have possibly found the problem that is causing the syringomyelia, she can be operated on and ideally stop its progression, if not even shrink its present size - the syrinx runs the entire length of her spine - on the bright side, it is very skinny - the width is what causes the symptoms and ultimately destroys the central cord. I am taking her to the top doctors in the country at the Chiari Institute in NY during September for a 2 day testing and evaluation period to confirm the cause - we believe it is a borderline Chiari malformation, but could also possibly be a subtle tethered cord. Both of these causes can be corrected with an operation that will then hopefully, collapse the syrinx. In any case, I believe we will finally have an answer rather than what we have heard from the local neurosurgeons which is "Oh, she has a syrinx". And, yes, the whole thing is terrifying - I can't tell you the number of nights I wake up with a start and a knot at the base of my stomach...
    Anonymous 42,789 Replies Flag this Response
  • Dear Fauve: Did you ever take her for NAET? Also Reiki always helps children with Neurological conditions.Best. All in good time. She has an incredible amount of doctor's appointments and testing being done right now (she is due for another spinal MRI, a CINE MRI of the brain, a 3D-CT scan of the head, a 3D angio CT scan of her neck, xrays of her cervical and lumbar spine and a bone scan. The syringomyelia has caused scoliosis in her spine - so there's the orthopedist. She also has GERD and small bowel issues, so there's the gastro guy. And, she has joint problems/possible Ehlers Danlos Syndrome (blessedly not acting up right now) - this has been linked to Chiari malformations - in fact, may be the causative factor for them - so there's the rheumy. And, of course the local neurologist and neurourgeon who like to keep an eye on her - but don't do much other than issue neurontin and darvocet Rxs. I think once she gets in with the guys in NYC, who are experts in EDS as well as Chiari (they became so after they discovered the high proportion of Chiari patients with joint problems), we'll be able to cut out some of the locals, and have time to explore alternative therapies. After she is operated on we'll also know where she stands pain-wise, and neurological-wise. And, with all of these tests and doctor's visits, I have to keep in mind, she is just an almost 15 year old who only wants to go to Photo camp this summer...
    Anonymous 42,789 Replies Flag this Response
  • Reiki is now used in hospitals to prepare patients for surgery and diagnostic procedures. It can also help the body heal quicker before, during and after surgery.Reiki modifies the brainwaves to a healing modality.NAET can help you figure out what elements around her aggravate her condition: cleaners, fibers, food- etc. It can help her medicines work better by eliminating side effects. NAET can eliminate side effects of anesthesia, light, vibration, radiation, etc.Since she is having a procedure, you want to ensure that her body is using all essential nutrients properly: Vitamin C, E, Potassium, ect.Aminoacids can also be evaluated with NAET. You can check for her seratonin, tryptophane, etc using NAET.It sounds like a lot- but a 2 hour evaluation can let you know about how she is reacting, absorbing and tolerating 20+ chemical substances that she consumes, inhale, touches and produces.Take Care.
    Eatafruit78 960 Replies Flag this Response
  • Thanks Eatafruit - great information. I promise you we will get there, but right now too overwhelmed and too overscheduled to throw something new into the mix. And, to beat all she's scheduled for otoplasty next week (ear pinning surgery). We scheduled this appointment 8 months ago, and it has a 3 week recovery time - her protruding ears really bother her, and is so looking forward to this surgery - just what I need right now - ACK....
    Anonymous 42,789 Replies Flag this Response
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