Discussions By Condition: I cannot get a diagnosis.

The Truth About CFS/ME

Posted In: I cannot get a diagnosis. 186 Replies
  • Posted By: mommy cat
  • June 30, 2007
  • 06:28 PM

CFS/ME is a real disease regardless of who believes it or doesn't.

It is primarily an Organic Neurological Illness, but also affects different body organs and systems such as liver,cardiac,musculo-skeletal,endocrine,respiratory, and lympoid tissues.

Originally named ATYPICAL POLIOMYELITIS, it was renamed in 1956, to Myalgic Encephalomyelitis...and renamed again by the USA CDC to Chronic Fatigue Syndrome in the 1980's, when there was a huge outbreak in this country and world wide.

CFS/ME/CFIDS/Post Viral Fatigue Syndrome, or whatever one chooses to call it, is one in the same illness.

It is a loss of the central nervous systems ability to recieve, interpret, store and recover information.
It is also a loss of internal balance known as homeostasis, affecting cognitive, hormonal,cardiovascular,autonomic and sensory nerve communications, as well as visual and auditory balance ect.
More than 64 symptoms have been documented.
A person does not need to present with 64 symptoms to be diagnosed with this illness.
There is such a wide array of symptoms due to the fact that this illness affects each person differently while continuing to present with a general pattern of major symptoms.

It is associated ususally with a short onset or "triggering" illness
Onset ususally takes form of either or any combination of 1) Respiratory Illness-Like an Upper respiratory flu...very common...2)GI upset...like a stomach virus...very common...3) Vertigo/Dizziness....4) A severe meningitic type headache.

Onset is usually associated with low grade or subnormal temperatures, headaches and intermittent attacks of vertigo/dizziness.

EVIDENCE OF PREVIOUS IMMUNE INSULT (SUCH AS A RECENT IMMUNIZATION) IS FOUND REGULARLY IN BOTH EPIDEMIC AND SPORADIC CASES.

The second and the third phases of the illness are ususally always differrent in nature from the onset of the illness and becomes apparent within 1-4 weeks after the onset of the presumed infections and triggering illness.

It also depletes Immune Fuction leading in many cases to secondary infections that a person with CFS/ME cannot ward off. Secondary infections include other viruses, bacteria, fungi and parasites.

There are many myths associated with this illness and I am doing my best to clear them up.

There are many people in this forum alone having symptoms of CFS/ME. I had noticed it the first week in May of this year and tried helping as many people as I could. There were times I was insistent, and at times sarcastic. I was banned from this forum for 1 month as I was considered a "spammer" and had many people complain that I was giving advice where it was not wanted and was not believed.

I have CFS/ME. I live with most symptoms daily so I am able to easily recognize them. I write to the people who are asking for help, who exhibit these symptoms. I have an "official" diagnosis. I was actually told by the neurologist I saw for this diagnosis, that I was a very clear cut case of CFS.

If I offend anyone with my chronic chronic fatigue syndrome information, for that I apologize. It was after I realized that this disease is actually the after effects of viruses we all have had in our lives at on time or another, that I began to post the info to many people. After all, who hasn't had a stomach flu, a respiratory flu or vaccines?

I wish you all well and may you find your answers as well as peace and harmony in your lives.

Stick around, there's more to come...mommy cat:)

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  • The symptoms of CFS/ME/CFIDS are vast. Many in this forum are having a few and some are having many. Some are having symptoms and don't realize they are in fact, even symptoms. I did not know that abdominal cramps and sneezing could ever be related in the same disease process but I had suffered both regularly for years. I never suffered allergies before my other symptoms began and did not know that allergies are, in fact, a symptom too. Remember, you do not have to have every symptom and this illness affects each person in a different way. I have met 3 others who suffer CFS/ME. One has many lung issues, another allergy issues, another urinary tract issues and myself suffer the neurological ones mainly. Even though our disease manifests in a certain pattern, we all suffer symptoms of other body systems as well.Follows is the group of symptoms Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacuity, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ).
    mommy cat 1654 Replies Flag this Response
  • CFS/ME/CFIDS is not a "catch all" phrase.Doctors do not diagnose patients with CFS/ME/CFIDS because they cannot figure out what is wrong with a patient.It is a very clear consise conclusion and clinical diagnosis like many other illnesses in the medical realm.There are many ways to test and many other issues to consider in a CFS/ME/CFIDS diagnosis.Much research has been done in the past 20-30 years on CFS patients.A Doctor from the University of Hawaii has infact studied the levels of "cigutera" in CFS/ME patients. He concluded that the levels of ciguatera in CFS/ME patients is higher than that of people with acute seafood poisioning which is where the toxin was discovered in the first place. In patients of seafood poisioning.Many MS patients were studied and over 90% tested positive for antibodies for a cryptovirus. Many doctors, scientists and researchers are beginning to believe that a virus could in fact, be to blame for many of our neurological illnesses like MS, ALS, Alzheimers and Parkinson's to name just a few.CFS patients develop allergies to many things. Wheat and Gluten is one of the big ones. Hence, Celiac disease. Outback Steakhouse chains have gluten free menu choices. Why?. So many are allergic.CFS patients have Immune Dysfunction, leaving them susceptible to many secondary infections like other viruses, bacteria, parasites and fungi.CFS patients have "flare ups" of symptoms. One may be fine for a while and then have a systems "crash". Fatigue is often on of the most obvious symptoms during this time. One is just "so tired"... There is a lot of information on this web of ours regarding all of this. This is not information I pull out of the air and just start sprinkling around. It's fact...not fiction. I am here to help.....mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Where do you get the list for the symptoms of cfs? Every site I ever saw defined joint pain WITHOUT swelling? It is believed by my Dr. that cfs, fibro, ms, and lupus are "cousin" related deseases - another believes that cfs is a precurser to ms or lupus. Where would you define the difference between a lupus/cfs diagnosis since lupus is so difficult to diagnose? It also goes into flare ups and alot of times its not diagnosed until organ damage is done. Would a person know if they progressed from cfs into having lupus or ms? or simply keep thinking its the cfs. since most probably already had blood tests/mri to rule out lupus/ms - wouldnt it be possible to develop these later? I posted a thread without any responses as of yet... do you know if ebv can be spread via blood transfusions? or by giving birth? I used to regulaly donate blood only to wonder did I give some unsuspecting person ebv. do/can they filter that out?
    Anonymous 42789 Replies Flag this Response
  • cdh...the idea is like this...CFS is the umbrella...all the rest of the diagnoses, like MS, Lupus, Lyme, ALS, EBV, Mono, HH6, Strep infections, staph infections ect...are under the umbrella. Some people have joint pain with swelling...some people have it without. Every person is different and are afffected by different viruses, bacterias, fungi and parasites.The doctors have their suscpicions about the relatedness of these diseases because they are all related in some way. A friend of mine has Lupus and Fibromyalgia with Raynaud's disease. I have CFS. We have same/similar symptoms. I tested negative for Lupus but do have Raynaud's and don't have a fibromyalgia diagnosis. See what I mean? It's confusing...Hope this helps and doesn't confuse you more:confused: mommy cat
    mommy cat 1654 Replies Flag this Response
  • mc,case in point you and your friend have similar symptoms different diagnoses... you tested negative for lupus which your friend has. at which point do you start to consider the possibility that you may have progressed to having lupus or may have had it all along. if you already tested negative do you think you would be able to tell if indeed the cfs developed into lupus? or would you just think its the cfs acting up? or like most people/dr.s you might over look lupus and think that that has already been ruled out. I only ask because I wonder at times myself at which point does this end....for some maybe just with the cfs others not so lucky and with lupus. I know these affect everyone differently with symptoms but still go back to how the cfs can mimic lupus so much. My symptoms are progressing to the point i can check more and more off the lupus list. is it still just cfs? did it turn into lupus? is it something else? I 100% believe and know what cfs can do but cant help but feel theres something else out there.
    Anonymous 42789 Replies Flag this Response
  • just CFS?...I don't think you understand...the CFS doesn't "turn into Lupus"...it allows the lupus, and the lyme ect to overtake us. CFS depletes the immune system, making it easy for other diseases to get ahold of us. You probably do have Lupus. You also have CFS which is the bigger picture...hope I am helping. About my friend...she is just awaiting her "official" diagnosis. She knows she has CFS. The Lupus, Fibro and Raynaud's were caused from the CFS...see what I mean?Hope so...keep asking questions...there is alot to figure out. I do not have all the answers but I will help you with what I do know...mommy cat
    mommy cat 1654 Replies Flag this Response
  • The Hallmark of Lupus is Multiple chemical intolerance- Multiple Chemical Intolerance is same as CFS- and I am not making it up- I just read it in a Medical Journal.Lupus patients have problems of tolerance with triptophan, anti-inflammatories, animal protein, and their own sleep neurotransmitters- same as CFS patients. Lupus patients often suffer muscular pain with excertion- and food allergies. The current medical approach to disease is wrong- that 's why there are so many "incurable syndromes".We are looking for real answers- I am not just going home with an RX- I want treatment- I want rehab :D.
    Eatafruit78 960 Replies Flag this Response
  • I found the following article very interesting. Unfortunately, the Cytokines are not secreted by the Endocrine system or any glands- so I think there is more going on with Neurotransmitters than what is mentioned here.So far it is a great article- it approaches it as "overlapping disorders"- the more Science goes into it the closer we are to debunk Psychiatry. :)**** Fibromyalgia and Overlapping Disorders: The Unifying Concept of Central Sensitivity Syndromes Muhammad B. Yunus MD, aProfessor of Medicine, Section of Rheumatology, The University of Illinois College of Medicine at Peoria, Peoria, Illinois Available online 13 March 2007. ObjectivesTo discuss fibromyalgia syndrome (FMS) and overlapping conditions, eg, irritable bowel syndrome, headaches, and chronic fatigue syndrome, within the concept of central sensitivity syndromes (CSS).MethodsA critical overview of the literature and incorporation of the author’s own views.ResultsThe concept of CSS seems viable. It is based on mutual associations among the CSS conditions as well as the evidence for central sensitization (CS) among several CSS members. However, such evidence is weak or not available in other members at this time, requiring further studies. The biology of CSS is based on neuroendocrine aberrations, including CS, that interact with psychosocial factors to cause a number of symptoms.ConclusionsCSS is an important new concept that embraces the biopsychosocial model of disease. Further critical studies are warranted to fully test this concept. However, it seems to have important significance for new directions for research and patient care involving physician and patient education. Each patient, irrespective of diagnosis, should be treated as an individual considering both the biological and psychosocial contributions to his or her symptoms and suffering. Keywords: fibromyalgia; central sensitivity syndromes; central sensitization; overlapping syndromes; fibromyalgia associations; functional syndromes Abbreviations: AMPA, α-amino-3-hydroxy-5-methyl-4-isoxazoleproprionate; CEP, cerebral-evoked potential; CFS,http://www.sciencedirect.com.proxymu.wrlc.org/scidirimg/sci_dir/nextterm.gif chronic fatigue syndrome; CNS, central nervous system; CRPS, complex regional pain syndrome; COMT, catechol-O-methyltransferase; CRH, corticotrophin-releasing hormone; CS, central sensitization; CSS, central sensitivity syndromes; D, dopamine; DNIC, diffuse noxious inhibitory control; EEG, electroencephalogram; FD, functional dyspepsia; f-MRI, functional magnetic resonance imaging; FMS, fibromyalgia syndrome; FUS, female urethral syndrome; GABA, γ-amino-butyric acid; GWS, Gulf war syndrome; HLA, human leukocyte antigens; HPA, hypothalamic-pituitary-adrenal; IBS, irritable bowel syndrome; IC, interstitial cystitis; MCS, multiple chemical sensitivity; mGlu, metabotropic glutamate; MPS, myofascial pain syndrome; NFR, nociceptive flexion reflex; NGF, nerve growth factor; NK1, neurokinin-1; NMDA, N-methyl-d-aspartate; PD, primary dysmenorrheal; PET, positron-emission tomography; PLMS, periodic limb movement in sleep; PMID, PubMed identification; PTSD, posttraumatic stress disorder; QST, quantitative sensory testing; RA, rheumatoid arthritis; REM, rapid eye movement; RLS, restless legs syndrome; RSTPS, regional soft-tissue pain syndrome; SLE, systemic lupus erythematosus; SP, substance P; TP, tender point(s); TDS, time-dependent sensitization; TMD, temporomandibular disorders; Trk-B, tyrosine kinase B; TTH, tension-type headache; WDR, wide dynamic range
    Eatafruit78 960 Replies Flag this Response
  • Chronic Fatigue SyndromeOne controlled study of 21 patients with CFS, of whom 48% had myalgia, demonstrated hypersensitivity to electric stimulus in widely distributed muscles, but not in the overlying skin or subcutaneous locations, irrespective of the presence or absence of myalgia (83). Several brain imaging studies in CFS have shown decreased blood flow in different regions of the brain, eg, frontal, parietal, temporal, subcortical, and periventricular (84). The significance of these findings is unknown but the regions involved may play a role in modulating fatigue and pain in CFS.
    Eatafruit78 960 Replies Flag this Response
  • I don't know much about CFS, but I have spent the last year and 1/2 reading about Lyme Disease and have been "clinically" diagnosed with it due to postive bands on Western Blot, a bite one week before it all began, and the specific symptoms and progression that I've had. I am very confused how one can lump Lyme Disease in with CFS, MS, ALS, Lupus,... Lyme Disease is an infectious disease caused by a specific spirochete bacterium, Borrelia burgdorferi. This is a specific disease just like any other infectious disease caused by a specific bacterium or virus such as HIV, syphilis, or salmonella. One could have the best diet and the best immune system and could still need antibiotic treatment once infected with this tick-borne illness. One cannot have Lyme Disease without being infected with that specific bacterium. Again, I don't know a lot about CFS, I am confused how it connects with Lyme Disease.
    kman543210 27 Replies Flag this Response
  • Depression and Central Sensitization: Is Depression a Member of the CSS Spectrum?The association between chronic pain disorders (including the CSS diseases) and depression is so well established that providing a large list of references would be superfluous. Prospective studies suggest that the relationship is bidirectional: chronic pain predicts depression (150) and major depression predicts chronic pain (151). A majority of patients with depression also complained of chronic pain (152). Intriguingly, patients with depression had higher pain thresholds than controls despite much pain. The number of TPs in depression was significantly lower than that in fibromyalgia (153). In the human pain laboratory, pain perception and threshold were mostly increased in patients with depression by most stimulus modalities, as critically reviewed by Dickens and coworkers (154). Decreased pain sensitivity has been demonstrated to several modes of stimuli, eg, pressure ( and ), heat ( and ), and cutaneous electric (156). On the other hand, ischemic stimulus produces decreased pain tolerance or threshold ( and ). All patients studied had major depression except minor depression in 1 study (157).Besides the stimulation types, laterality seems to play a major role in sensitization in major depression. The left side of the body is more reactive to pain stimuli in depression ( and ). This would support the theory that negative affect activates the right cerebral hemisphere that, in turn, potentiates further adverse stimuli, including pain, thus integrating depression and pain in depressed patients (160). A cerebral blood flow study showed asymmetry in the anterior cingulate and prefrontal regions with lower activity in the left hemisphere in depression (160), indirectly supporting an active role for the right hemisphere in depression, as also noted by others (156).In summary, the relationship between pain and depression is complex that is influenced by many factors, eg, mode of stimuli, laterality, gender, type of depression (eg, unipolar versus bipolar, acute versus chronic), emotional status, and status of medications at the time of the study (156).
    Eatafruit78 960 Replies Flag this Response
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  • Infection, Inflammation, Trauma, Sleep, and Environmental FactorsGeneral viral ( and ) or local (218) infections, as well as trauma ( and ), are reported to trigger many CSS conditions, probably through the action of inflammatory mediators that activate nociceptive fibers with resultant CS. However, there is no ongoing peripheral inflammation in FMS (219). The role of afferent neurons in CSS needs further study. A review article concluded that trauma from motor vehicle accidents (MVA) may trigger FMS in the presence of preexisting psychological vulnerabilities, and that there is a causal relationship between FMS and MVA (220), but another study failed to find an association between MVA and FMS. This latter article, however, has certain drawbacks, eg, a majority (60%) of the patients were male and no psychological factors were measured.CS has been demonstrated in osteoarthritis, and several systemic diseases, eg, rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) and, are associated with FMS. It is possible that arthritis and or colonic inflammation activates local nociceptors that initiate or sustain CS, particularly in susceptible individuals. However, other unknown shared neuroendocrine and genetic mechanisms may be involved.Nonrestorative sleep may cause CS. Healthy individuals subjected to disturbed sleep in a sleep EEG laboratory demonstrate multiple TP that were absent at baseline before sleep deprivation (164). Moreover, CS by algometry and other nociceptive stimuli (, and ) is correlated with poor sleep. Environmental stimuli, eg, noise, may also induce CS in the experimental pain laboratory (, and ).
    Eatafruit78 960 Replies Flag this Response
  • If you like reading here is a site ive been looking at www.jvi.asm.org/cgi/content/full/77/6/3690 its dated but knowledge can be everything
    Anonymous 42789 Replies Flag this Response
  • kman - how is your lyme disease now? were/are you able to get rid of the borrelia? Im not sure there is a connection between anything anymore. I read and search until my eyes blur, my head hurts, and dont stop until my brain literally cannot process another thought. Im trying to look to find something anything a common link.... when i first got my diagnosis i was estatic - finally a name to this plague. ive took anti-virals, detoxed, went on immunoglobin injections,etc. - my immune system is great now. i rarely get sick. if i (think) i removed the cause (ebv, hhv6) why do i continue to have symptoms? even new ones appearing. as for you if you get rid of the borrelia shouldnt you rid yourself of the disease? i do not know much about lymes but do realize if left untreated as many other illnesses you can have permanant damage.
    Anonymous 42789 Replies Flag this Response
  • "There are many people in this forum alone having symptoms of CFS/ME. I had noticed it the first week in May of this year and tried helping as many people as I could." Hi there Mommy Cat :) , seems you've been here and taken off where I left off. Ive been away for several months or so, but before that I was here doing the same, trying to help those here I've noticed have CFS/ME but arent managing to get properly diagnosed. I've had severe CFS/ME for over 10 yrs (properly diagnosed by quite a few doctors and specialists, I got diagnosed 10 yrs ago and now take part in CFS/ME studies). As you would know yourself, most doctors cant diagnose it easily as they dont know much about it themselves and most doctors have never seen a CFS/MEr (or if they have, they've sent them away telling them they dont know what their problem is or ignoring them). "CFS patients develop allergies to many things. Wheat and Gluten is one of the big ones. " Its about 20% of people with CFS/ME have wheat allergy and 20 % have dairy intollerance. What is more common is fructose intollerences...50% of CFS/MEs, the lastest studies have shown cant break down fructose properly.
    taniaaust1 2267 Replies Flag this Response
  • Dear Taniaaust1...So nice to meet you!. I'm feeling like a one man band on world tour. I do know that diagnosing CFS/ME is not easy. I also know that many people here are all telling the same story...been to every doc...seen every specialist....had every test, ect...That alone, is one of the patterns I noticed for it was my story too...Next are the symptoms...they are everywhere in this forum.So many are getting pushed around from doc to doc..with no answers.The oddest part is that noone has said that CFS has previously been ruled out.So many docs and patients themselves don't believe that the disease exists. That is the main problem. The good part is that with the wwweb, we have access to information from around the globe at our fingertips.There are many here who are not happy with me. They do not believe one diagnosis could be responsible for so many people's illnesses and symptoms. These, obviously are the people who do not know very much about this disease.I do not know everything about it, but I am willing to share my information and experiences, hopefully to help others find their answers.I would not wish for my worst enemy to endure what I have been through over the past years. The questions, the wondering, the fear, the dissappointment I felt when tests would come back "normal" and top docs in this country saying..."I don't know". It's enough to drive people crazy. I know, I almost went there until I found info on CFS/ME. I knew the minute I read the symptoms that it was my answer. Not the one I would have chosen, but nevertheless, my answer.Thank you so much for sharing...Perhaps your input will help people realize this is for real.....mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Taniaaust...very interesting...the info I found states that 100% of people with CFS are allergic to wheat. When I went for Bioset treatment, I tested "muscle weak" for wheat. I had been suffering spells comprised of abdominal cramps, diarrhea, wet facial and upper body flushing, near syncope, and sometimes L sided weakness/flaccid. Tracing backwards, I am realizing it was probably the wheat. Lactose is another one...doesn't bother me, but many. Ask Eatafruit about the fructose, hehehe...she is always asking people about the sugar. Pure, white refined sugar is no better for you than white bread, rice ect...I believe alot of the chronic candida that CFS sufferers endure is from their high intakes of refined sugar. When the body can't process it, it ferments, so to speak...hence yeast. Alcohol too. I have a severe intolerance to alcohol. For the past 10 years I have been joking with my frineds saying I thought I was becoming "allergic" to alcohol for it would make me so sick. Low and behold, alcohol intolerance is also a CFS symptom.I believe I have had many CFS symptoms my entire life but it was not until they became so severe at beginning of 2005, that I realized I was infact very sick. Sadly, I think that is the story of many.Please keep posting with info you are finding. 100 heads are better than one. Especially when the one is mine..I have memory problems and sometimes get confused. No wonder it's difficult for people to take me seriously sometimes.Again, Thank you for your help...it does not go unappreciated...mommy cat:D
    mommy cat 1654 Replies Flag this Response
  • Kman - I will give you my take and many may not like it, believe it or agree with it. Oh well. I do and have for about 8 years worked with patients who are in this fold. All the strange symptoms, coinfections (which are opportunistic due to the stress from the primary infection) waxing and waning symptoms are due to most cases of CFS, ME, FM being Lyme disease. Autoimmune = the body attacks itself.Why does it do that ?Lyme hides very well, especially in the heart, joints and nervous system.Lyme can change its form in one second, so the immune system cannot recognize what it believes it is looking for. The immune system still attacks because there is some "evidence" that it was or maybe is there. Lots of the confusion on the varying symptoms is due to Lyme expressing itself differently in different bodies. Lyme is a "great imitator" - the symptoms can be mistaken for many other diseases. Most say if you have had it for more than a month you cannot totally get rid of it.A friend who studies many types of healing tools primarily for autistic children (and there is lyme induced autism) recently told me that using a hyperbaric oxygen chamber and then immediately using a really good far infrared sauna can pretty much get rid of the Lyme. If you desire, I can point you to some good natural docs in OR and southern WA. I know some there personally as I went to school with them in Portland in the mid and late 1980s.
    Anonymous 42789 Replies Flag this Response
  • Ralph, The more research we do, the more Lyme comes into play. I,like many are uneducated regarding Lyme. I, like many, always thought it was "tick bite" related.We are finding many coincidences, correlations and connections with Lyme and CFS.I'm curious...I was tested for Lyme, it came back negative.When I attended Bioset treatment, however, I tested "muscle weak" for IgG, but not IgM...does this make sense?I suppose Bowen or IgeneX are the only way to find out.Thanks for your input Ralph. It is helping a bunch of sick little girls attempt to figure out this whole mess...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • kman - how is your lyme disease now? were/are you able to get rid of the borrelia? Im not sure there is a connection between anything anymore. I read and search until my eyes blur, my head hurts, and dont stop until my brain literally cannot process another thought. Im trying to look to find something anything a common link.... when i first got my diagnosis i was estatic - finally a name to this plague. ive took anti-virals, detoxed, went on immunoglobin injections,etc. - my immune system is great now. i rarely get sick. if i (think) i removed the cause (ebv, hhv6) why do i continue to have symptoms? even new ones appearing. as for you if you get rid of the borrelia shouldnt you rid yourself of the disease? i do not know much about lymes but do realize if left untreated as many other illnesses you can have permanant damage. You are absolutely correct that in many cases even when all the bacteria have been eliminated, one can still have permanent damage done to the body and not be completely symptom free. By getting rid of the active infection, however, one should be able to see improvement. Now, how long of treatment and how long until improvement is seen, that's the conrtraversy with Lyme Disease. The reason that the tests have been said to be unreliable is that the spirochetes can go into a cystic form and hide not only from your immune system, but get in deep into the tissues. As for how I'm feeling now, well, I haven't started the 2nd round of treatments yet. The first time I was unable to finish due to developing an allergic reaction. I've been sick for 3 years, so it was difficult to tell if I was improving, although I did stop waking up in the middle of the night feeling dizzy after a month, and the weakness in my legs seemed to stop advancing. Until I see real improvement, I'm not ready to say that I absolutely have Lyme Disease. There have been so many people misdiagnosed with other things. I know that this is going to sound anecdotal, but it's true. My cousin's really good friend was diagnosed w/ MS and even w/ treatment ended up in a wheelchair, could barely even move. I don't know the reason, but they decided to test her for Lyme, and she tested positive. After a year of treatment, she is still in the wheelchair, but made significant improvements. That's an example of someone who may never be normal again due to not receiving proper treatment soon enough even if they get rid of all the bacteria. The purpose of my post here is that I'm still confused how CFS can cause Lyme since it can only be caused by one specific bacterium.
    kman543210 27 Replies Flag this Response
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