Those diagnosed with ms, have the best theories

EBV (interesting very interesting info)

Independancy is everything

What have we managed to acieve in our communities. We have managed to isolate not only our elderly but our disabled, we have taken away their indepenancy that their communities and amenities offered them. And when we drove away to the shops in our cars, it didnt occur to us that we had left anyone behind.

We now wonder why our care facilities are now full.

By stripping away someones independancy, we then make them submisive. To have to accept and rely on a flawed system, and thus the sham that has been manmade continues.

Independancy creates ideas and thoughts, the ability NOT to accept the unacceptable, and there lies the problem.

I can see it all so clearly, where others judgement and perception has become clouded.

Appreciation

Until society understand and comprehends their own bodys remarkable make up and system, through unfortunate ignorance, responsibility for ones own health will be misplaced.

Basically what I mean is we have to take care of what we subject our own bodies through, whether it be diet or lifestyle, it can and will only endure so much, it usually warns us in some way if we mis manage it. It did me as regards to stress, but I foolishly ignored it, hence my ultimate misdiagnosis of ms.


I know now though, message received and now understood, just need everybody else to follow.

Ann Boroch and Montel

Ann Boroch was in her twenties and disabled she was diagnosed with ms.

She has A book ok "healing Multiple Sclerosis" which she did through an anti Candida diet removing toxins from her body

Now replace the word "Multiple Sclerosis" from the book title the replace it with "Candida" and it all begins to make sense.

Take a look at u-tube clip and make up your own minds.

Yet again Candida rears its head, is the swank diet similar but without the suppliments that help cause die off of fungus.So like me you can have two thigs going on side by side.

misaligned Atlas + Candida = ms misdiagnosis

and possibly

Lymes + Candida+ ms misdiagnosis  or even just Candida =ms misdiagnosis and the list goes on because a lot of Candida symptoms match that of ms.


When is that penny going to drop.

drug cure for viral infection ( very positive)

posted aug 2011

I have very mixed feelings about the MS Society as for me they have done nothing, they actively banned me from their boards through fictitious and false claim, by members that use the board as a social network. I myself was only interested in gaining information and debating things with others of interest, plus having a bit of a laugh at the same time.

I didnt go quietly no, why should I, after such unfair treatment. But then on the other hand if they hadn't of tried to silence me (the users that is) this blog would not exist. So hey ho perhaps unknowingly they did me and others a big favour.

So thank goodness for the short sighteness, nice one.

???????

Do WE have all the answers, and that is the question.

posted aug 2011

 we the diagnosed have all the answers

 >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Over these last years I have had the privaledge to observe firstly the MS Societies message boards and now Thisisms boards I have gleened so much from those that have received a positive diagnosis, the real people caught up inthis whoe fiasco.

We have more if not all the answers that will ultimately make this manmade (medical profession mainly) condition nul and void

The MS Society has already spent 136million on futile investigations, when are they going to get it

MS does NOT exist, so therefore you cannot CURE it.

Still on Epstein Barr subject I'm affraid

Right where do I begin. Right. I dont get coldsores, never had chickenpox, never had shingles, but i was treated for genital herpes 20 + years ago, I am sure I wasnt tested for it though it was just assumed. my partner never had it either. But today I have looked at thrush symptoms and that is what it looks like I had, it fits perfectly apart from the itching I didnt have that.

So am I immune. Also I have never suffered from fatigue. Does the Epstein Barr virus lay dormant and resurface as fatigue?????

Epstein Barr t+ valtrex use (very interesting indeed)

CIDP more crossovers, what is going on!!!!!

The symptoms of Chronic Inflammatory Demyelinating Polyneuropathy include numbness, tingling, burning and weakness, generally occurring in the feet first and they gradually ascend to involve other parts of the body.  One of the first signs that could develop is a foot drop, where patients develope weakness in their ankles and as a result tend to trip over their feet, or they could develop numbness and tingling in the feet and toes which gradually spreads to to the other parts of the body.  Other organs could also become involved including inability to adequately empty the bladder, nausea, vomiting, abdominal fullness or bloating, diarrhea, or constipation, low blood with dizziness, or trouble maintaining an erection.  The severity and the combination of symptoms vary.  Some could have only numbness and tingling only, others could have weakness only.  Some patients are severely affected and they could become completely paralyzed and have severe numbness and tingling.  Others have a very slow progression with mild disease.  These patients often complain of difficulty with walking.  They develop poor balance and cannot walk for long periods of time.

Its hard to watch

Its hard to watch so many people focus on ccsvi alone, not considering it as a symptom of something other than ms e.g the Atlas. It must all be so overwhelming for others, as it dominates so much.

I suppose its even harder for me to watch, knowing what I know, and I cant prove anything,

I just have to let it go, but I can see all sorts of law  suits in the future, especially if a procedure has to be re done and refinanced sseveral times, that will cause hardship and distress and when that happens so does blame, but blame who? For my sake and sanity I have to pass it.

Hard but i'll do it.

old post re epstein barr 16/1/11

Sunday, 16 January 2011

Epstein Barr

This subject comes up quite often on the mss site, Glandular fever also the Herpes virus there is some kind of link, perhaps lays dormant in the system and resurfaces as fatigue, I dont know there is some kind of link, but what it is I dont know, perhaps I'll do some digging, its worth a look.


Well looked and hey! bingo, cronic fatigue.

Chickenpox too lays dormant, how many links to this chain I ask, is it also linked to fatigue, I'll look and check again. Here goes.

Hey presto, chickenpox can cause fatigue also.

Shingles/chicken pox linked to Epstein Barr virus

Sep 22 2009

Epstein Barr Virus (mononucleosis and glandular fever) and Shingles

Published by Elizabeth at 5:25 am under Complications of mono

The link between Epstein Barr virus and shingles
Epstein Barr, the virus that causes mononucleosis or glandular fever, can weaken the immune system and lead to an outbreak of shingles or Herpes zoster.
Chicken pox and shingles are caused by the varicella-zoster virus. Like Epstein Barr virus, the varicella-zoster virus is a member of the herpes family. The virus may lie dormant in the spinal cord or nerve ganglia for years until triggered. Stress, illnesses like Epstein Barr virus, cancer and certain drugs can weaken immunity and trigger shingles.
Symptoms of Shingles
Shingles affects the nerve endings in the skin. An outbreak of shingles is often preceded by a few days of intense pain in the affected area. There may also be Epstein Barr virus type symptoms like fever, chills, fatigue, nausea, loose stools or difficulty urinating.
Numerous painful and itchy blisters then develop. These fluid-filled blisters usually appear on the skin of the abdomen, but can appear anywhere on the body. The blisters last between 7 and 14 days before forming crusty scabs and dropping off. If shingles develop near the eyes, the cornea can become infected, causing vision problems and possibly blindness.
After an attack of shingles, the pain can sometimes last for weeks or months, even though the blisters have cleared up. Chronic pain on the skin is called postherpetic neuralgia. It indicates that the virus is actively replicating.
Natural treatments for Shingles
There are numerous homeopathics which are effectively used for shingles. They include Hypericum, Arnica, Phytolaca, Rhus Tox and Agaricum. Some of these are also effective for Epstein Barr virus.
To help your recovery you need to have a diet high in Lysine. Lysine is an amino acid which is found naturally in protein foods like fish, chicken and meat. It helps to boost immunity and has been shown to be effective against the Herpes zoster virus. You should also take Lysine supplements at the first sign of an outbreak. It is good to take it in a supplement form of 500 mg two to three times a day.
You need to avoid the arginine rich foods like chocolate, grains and nuts which can encourage an outbreak. An immune boosting diet similar to that followed with Epstein Barr virus should be adhered to. This needs to include an abundance of raw fruit and vegetables, quality protein, natural fats and anti-viral foods like garlic and onions.
Some sufferers find that sunlight and heat can trigger an outbreak, so watch your reaction to these.
For shingles as well as Epstein Barr virus, stress reduction, drinking plenty of water, getting adequate sleep and taking the anti-viral supplements like vitamin C, zinc, garlic, selenium are important.
Cold compresses can reduce shingle pain. Cayenne capsules which contain capsaicin can relieve pain and aid healing. Capsaicin is also the active ingredient in some of the topical Shingle creams.
Anti-virals like Acyclovir from your doctor can be effective if taken early in the outbreak. After about 3 days these anti-virals appear not to be effective.
If you have developed shingles or Herpes zoster after Epstein Barr virus, then there is a lot you can do with natural therapies. For further information please refer to the mononucleosis treatment plan as discussed in the e-book “Nature’s Amazing Mononucleosis Cures” by qualified naturopath Elizabeth Noble.

blood pressure and Atlas (interesting)

Many crossovers=ms misdiagnosis

After watching various topics on an ms forum (thisisms) There are many different variants that can result in an incorrect diagnosis of ms, its really quite mind boggling. So many crossovers. Goodness the medical world has made this massively complex.

Its not Neurologists or Doctors fault it is those that control the NHS they give out the ordersthe others just do what they are told to.

They have made a massive mistake in not taking notice of Holistic medicine, alternatives, Chiropractors especially, the more I read of other peoples ideas etc the more it appears a mass misdiagnosis has occurred, this one cant now be hidden as those that have been diagnosed will now take control. Medics absolutely NOT required.

Also it is imperative that Candida is recognised, as is related to diabetes, and also causes sugar cravings, to not go public is again a massive mistake.

Its all going to hit the fan sooner or later. I was asked why I decide to be reclusive. Its because until I walk I'm not prepared to enter society. People diagnosed have spent years waiting and hoping for a cure that just isnt going to happen. I will give them tangeable proof of that, when I walk, they deserve nothing less.

Young adults

I will write in more detail tomorrow, but society has to stop stressing out our young adults, as in a few years time, masses of them will be in "limboland" awaiting some kind of diagnosis, I can see it coming, theyve got it wrong and need to leave the kids alone and find alternatives.

Atlas v CCSVI

 I cant believe that 2 years on no-one has researched the Atlas implications as in to CCSVI, truely mind boggling, does it come down to money, I just cant see why they havent connected the two. crazy crazy crazy

I wud test for Atlas,Candida, Lymes and Lupus

If I was in charge with every newly diagnosed ms patient, I would have a Chiropractor check to see if their Atlas is misaligned and treated plus I would have them tested for Candida, Lymes and Lupus.

But thats in an ideal world

The lesion theory may be wrong

The lesion theory way back and bya French man, doesnt appear to ever have been challenged, quite remarkable really, why wasnt it? I was diagnosedon a positive MRI but I havent got it and this I cannot prove until I walk. But I will

My Atlas/stress/Candida = ms misdiagnosis

I think the genetic lik, in my case of an ms diagnosis is the stress related genee that  inherited from my father, he was a worrier and so was I.

I was subjected to ongoing stress for a constant number of years.

I believe that my original 2 episodes which were a number of years apart was my body warning me.

I think that the geographical link is in how westernised and stressful a country is and that their will be fewer cases in Eastern or poor countries.

I believe that I have not only had a misaligned atlas, that has caused spasm tremor, l'hermites and affected blood flow. I also had on top the condition Cadidiasis.

I dont believe that I even have ms, my meylin is not damaged as I would be aware of that by its unpredictability alone and that is not the case.

I appear to be alone at present in refuting my diagnosis, even that by itself seems a little weird, that I am the only personv who they have made a diagnosis mistake. Surely there should be more, as mistakes do happen.

Yes the condition has been misdiagned as lymes etc. but I am talking of the Atlas or Candida.

There are people who claim to have cured themselves through diet and this I believe especially if cutting out yeast or sugar as it is the Candida they have cured, there is nothing else to cure.

Re my previous post

Although I have more or less reverted back to as I was before acupuncture, I know that the points used were the right ones. I shall have them done again on Tuesday. I have made a limited progress as my left knee is not as painful and the leg doesnt flex and twist at the kneee as it was.

So looks like we may be on the right track. My physio has also requested that my Doctor refers me to access future physio on NHS.

Now there is no way I would enter NHS system if I didnt know that I have a real chance of rehabilitation.

Well, so far so good (acupuncture points)

Tuesday, 16 August 2011

try some acupuncture points

As my main problem is the sciatic nerveI have decided to give some different acupuncture points a try.

Sciatica UB36,UB57 and GB30

Knee pain ST35, SP9 XIYAN

neck pain SI 12, GB20 GB21 and UB7

It cant harm to try and I will let you know if possitive results

 

Well just returned from having above acupuncture done,and at this moment I do feel different, remarkably calm, pain free. strange I'll see how I go.  You see if you dont try things out, we dont learn, maybe a temporary thing but I will definitelty do these points again.

may be of interest re lyme and blood flow

fibromyalgia, cronic fatigue and Lyme disease

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease by Bonnie Gorman RN   Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002.  His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues."  Dr. Donta is a nationally recognized expert on Lyme disease.  He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School.  He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point.  He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research.  What does Lyme disease have to do with CFS and FM you might be asking?  Some people believe that Lyme disease may be one of the causative factors in both CFS and FM.  Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa.  Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM.  We asked Dr. Donta to help sort all this out. Parallel Symptom Patterns Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI).  He pointed out the similarities between them, and found there were few differences.  He has treated hundreds of patients with these illnesses.  He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well.  Clinically it is almost impossible to distinguish or differentiate these illnesses.  He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI.  These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function.  Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).   Lyme Disease Symptoms Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, "bull's-eye" rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.   The only symptom difference in Lyme disease is the expanding circular rash with a clearing area and center resembling a "bull's eye."  He pointed out that Lyme has multiple types of rashes and half of the rashes are not typical, they may not even include the "bull's eye" rash.  They can appear from two day after the bite, then go on for a week or so.  Patients who are infected may not develop or see the rash, and may not develop any future symptoms.  In studies, only one third of the patients were actually aware of their tick bites.  30-50% of acute Lyme disease patients went on to develop chronic Lyme disease.  Additionally, some previously asymptomatic patients may reactivate their infection following various stressors such as trauma, surgery, pregnancy, coexisting illness, antibiotics treatment, or severe psychological stress.  The Lyme vaccine can also reactivate their infection.  Similar triggers such as trauma, surgery etc. are known to precipitate CFS, FM and GWI as well.  This is not a new phenomenon with infectious diseases.  We know infectious diseases (i.e. TB) will reactivate after illnesses or surgery-- any stressor. Dr. Donta reported on the effects of gender on host susceptibility in Lyme disease, CFS, FM and other multi-symptom diseases.  In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios.  He noted that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus.  Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women.  He concluded that gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom disorders. Etiology Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear.  Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick.  This bacteria is the Borrelia burgdorferi bacteria.  It was identified in the late 1900s in Europe.  The US was late to recognize what Europe had described.  Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT.  Since that time Lyme disease has been identified in many states.  The CDC reports that it causes more than 16,000 infections per year in the US.  Some researchers feel that the prevalence is higher than that.  CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM.  In addition to Lyme, there are a number of other possible causes.  The evidence is still circumstantial though.  Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS.  It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder.  There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits. Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI.  These same bacteria have also been implicated as causative agents of rheumatoid arthritis, based on PCR-DNA evidence in patients with these disorders in which 50 percent are found to have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10 percent of a normal population.  Whether the presence of this DNA represents past exposure or ongoing infection remains to be resolved.  No long-term studies have yet been performed in patients with CFS and FM to determine whether the finding of Mycoplasma DNA persists over months or years or whether such patients have any evidence of other infection such as Lyme disease or infection with Chlamydia species. Central Nervous System Involvement Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease.  Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes.  Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain.  Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system.  Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function.  Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms. Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information.  There is a lot of cross-talk in the nervous system.  This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems-- the brain fog so commonly described in all these multi-symptom disorders.  Although the disease pathways for other possible causes of CFS and FM have not been defined, Dr. Donta postulates that the central nervous system would appear to be a logical target for other pathogens or other disease processes.  These illnesses clearly affect the brain and are bound to cause many neurological manifestations.  Any changes in immunologic function would not appear to be sufficient to explain the various symptoms, and are likely to be secondary to other disease processes. He feels we have been thinking too simplistically about finding whole organisms replicating in chronic diseases.  It is highly likely that there is no single cause for these illnesses.  It's more likely that there are multiple causes-- different organisms causing the same final set of symptoms.  Researchers need a better algorithm to study these fatiguing illnesses.  We need to be more inclusive, rather than trying to separate the illnesses.  Sometimes in medicine, if an illness is too complex to study, research interest dwindles.  We have the technology to do the research, but there hasn't been the will and the momentum to get it done. Clinical Diagnosis Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on clinical grounds, just as with CFS and FM.  Once other disorders are ruled out, the combination of symptoms over months is sufficient to make a presumptive clinical diagnosis.  The diagnosis of Lyme is made easier if a typical rash is present during the early phase of infection.  After that, it is difficult to distinguish the flu-like illness that can occur a few weeks later, or can recur over a number of months.  Dr. Donta reported that some patients develop severe headaches and an aseptic (infection free) meningitis, which frequently is diagnosed instead as viral meningitis.  If a Bell's palsy occurs (drooping of one side of the face), the possibility of Lyme disease is likely.  If an unprovoked arthritis occurs, causing swelling of a single joint, especially the knee, but sometimes more than one joint, then the possibility of Lyme disease should also be given high consideration.  He emphasized that it is the chronic phase of the disease that causes most problems for physicians and patients, because of the lack of objective signs and the presence of so many symptoms that it causes some doctors to attribute psychological reasons for the patients' symptoms.  Many patients then receive a diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as the cause of their symptoms. Diagnostic Tests Tests for Lyme disease, like tests for other infectious diseases, are often confusing and circumstantial, and their analysis and interpretation has often been flawed.  In infectious diseases you do a Western blot test to see if you have a specific reaction.  Western blot separates out proteins antigens of an organism you are looking for.  It tells you if a person has been exposed.  It is not a direct measurement of the organism.  It is a measurement of whether the person has antibodies to it.  Antibody tests are useful in the early stages of illness as with other acute infectious illnesses.  Once the illness is in a chronic phase, antibody tests are not useful. Just as viruses change from year to year, we know the Lyme bacteria mutates.  There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative.  These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection.  This allows them to get where they want to go-- the nervous system.  Once they are inside a cell, the immune system can't see them.  That said, Dr. Donta explained that lab tests have been helpful is some patients with Lyme disease, especially those with arthritis, in whom there are stronger antibody responses than in those with the chronic, multi-symptom form of Lyme.  The criteria for the laboratory diagnosis has been patterned after the arthritic form of the disease, and not the chronic form; as a result, there are many physicians who are misinformed about the test's lack of value in chronic Lyme disease.  The Lyme Western Blot is helpful when it shows reactions against specific proteins of B. burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic Lyme disease.  PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive, most likely because the bacteria and their DNA are not present in those body fluids, but inside nerve cells.  Additionally, PCR-DNA studies are very easy to contaminate. In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients.  It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias.  (There are also positive MRI findings in CFS and FM patients as well.) Dr. Donta reported that the brain SPECT scan shows some changes in blood flow to various parts of the brain, primarily the temporal (cognitive processing) and frontal (mood) lobes in about 75 percent of patients with chronic Lyme disease.  Patients with CFS have also been reported to have some brain SPECT scan changes, frequently involving the occipital lobe.  No comparative studies have been made among patients with chronic Lyme disease, CFS and FM.  The mechanisms underlying these changes remain to be defined, but may be due to a mild vasculitis (inflammation of blood vessels) or to a signaling problem within the nerve network of the brain in those specific areas.  It is promising that these changes are reversible in most patients treated with antibiotics that appear to be effective in treating the chronic Lyme disease.  These MRI changes are often slow and may take a year to reverse themselves. These are covert organisms we are dealing with.  We need more direct detection methods for blood, spinal fluid and other body fluids.  How do you detect organisms in spinal nerve roots or brain?  Right now we can't.  Nobody is going to biopsy patients.  We need an illness registry so we can do direct detection studies, particularly of the brain, after death.    Treatment: Persistence Pays Off Dr. Donta reported that there are lots of drugs that are active against the Lyme bacteria in the test tube, but the big question is whether the drug can get to the bacteria?  Lyme bacteria lives in the cells of the nervous system, perhaps other cells.  Dr. Donta has experimented with various intracellular-type antibiotics.  He reviewed his journey through various antibiotics.  After listening to his patients he decided that some antibiotics were better than others.  He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax) which he found had powerful activity against Lyme bacteria in a test tube.  But the antibiotics, by themselves, did not seem to do any good.  He found that you need to change the cellular pH (the degree of acidity or alkalinity), making it more or less acidic, to maximize the effectiveness of the antibiotic.  This allows the antibiotic to work better i.e. doxycycline seemed to work better when the pH was higher.  Dr. Donta has experimented with various agents to adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat malaria).  He just submitted proposals to NIH to study various agents to determine which is most effective.  Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term-- 12-18 months, sometimes 24-36 months.  This length is not unusual in the treatment of infectious diseases i.e. TB.  In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you'll feel worse.  You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working.  The earlier in the disease process that you start on treatment, the more successful it is.  The more chronic the condition the less successful it is, and you'll need to treat over a longer period of time.  This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease.  There are 10-20% who do not respond-- generally those with a strongly positive Lyme test.  Dr. Donta reported that similar results have been found in some patients with CFS and FM of unknown cause, supporting the hypothesis that some patients with CFS and FM have an underlying infection responsive to those antibiotics.  Antibiotic trials in CFS and FM have been limited to one month, a duration that is inadequate to properly evaluate the potential of certain antibiotics to have a positive effect on the disease.  Additional studies, examining both potential etiologic agents of CFS and FM as well as treatment trials should lead to a better understanding of both the cause and treatment of patients with CFS and FM. Q&A

try some acupuncture points

As my main problem is the sciatic nerveI have decided to give some different acupuncture points a try.

Sciatica UB36,UB57 and GB30

Knee pain ST35, SP9 XIYAN

neck pain SI 12, GB20 GB21 and UB7

It cant harm to try and I will let you know if possitive results

Reasy to re enter NHS system

I have been advised that it may be beneficial for my rehabilitation to re enter the system and acces treatments such as physiotherapy/

I will have to bite my tongue, but I think now I am mentally strong enough to do so. I am now in control  and will avoid diplomatically what I disagree with and definitely no drugs as no need. I will tale the natural approach.

Also as this wheelchair is not supportive enough I have now been re assessed for a new one, which is also very good news.

Sciatic nerve andmeridian link

My status today is the sciatic nerve which exits the lower spine and and seems to effect both my legs, Its a different pain than I had in my lower back that has gone and is now replaced with a sore burning discomfort mainly at night, hence me being up at 4am if I get up sit up discomfort goes.

The other night I awoke and my legs paticularly my left was incredibly tight and painful, I went for a wee and it definitely released, which indicates to me that the expansion of the bladder irritates the nerve plus I think the bladder meridian also irritates it as when I wee my right foot releases tension a little. I know it all sounds complex but as I am now well aware, the human body is.

I'm back and totally focusing on this blog

I have these last few weeks been visiting an alternative forum for msers, but have decided to leave site. I have noticed that the CCSVI issue has become so mammoth its now quite scarey. there is a kind of brainwashing happening and that is a huge mistake for those diagnosed with ms and some are so convinced theres no swaying.

I now realise, that it is not advisable to get involved, I just worry that it is overtaking peoples thinking, I can see why but I am now distancing myself from it.

The Atlas is the anomily here nothing else, ccsvi doesnt cause ms as it doesnt exist so cant. Anyway for me its now business as usual..

I'm back

I need help to adapt back

My physio recommended for me to see another physio who practices a diferent tecnique, he is a German guy and will  push and pull me, he is also more expensive to see but hey I'll try anything to make quicker progress.

Over the years I have subconsciously adapted to anomilies that have occurred in my to function, I need help to adapt back.

concerned that the limelight is focused too much on one issue

I am deeply concerned that there is such a massive focus on CCSVI and stents  etc that other alternatives are being overlooked. Its not a cause of ms vice versa.

What worries me is that newly diagosed of ms will believe it is the natural way to go, its promoted constantly left right and centre, theres no escape, the cause of narrowing needs to be established, and as far as I am concerned the Atlas is a strong contender very very strong.

Thats why my previous post re Dr Donald Leibel  is so important http://www.necksecret.com/ normally I would not premote anyone specifically but I believe in all that he says.

The future is in holistic/alternative medicine, the use of drugs should be much more limited. That is why Candidiasis/Candida albicans needs to be public knowledge, as its implcations are widespread.

This man needs to be listened to re atlas and lyme

Chronic Pain & Wellness Solutions                       Dr. Donald Liebell       
                 Complementary & Alternative Medicine -                                               477 Viking Drive Suite 170
     Backed by Mainstream Science, Research & Technology                                                              Virginia Beach, VA 23452
                                                                                                                                                                                                                                 (757) 631-9799
Dr. Donald Liebell  477 Viking Drive Suite 170 Virginia Beach, VA 23452
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Lyme Testimonials..The Atlas Vertebra: The "Neck Secret"
How an Iowa Scientist
Discovered One of the
Hidden Keys to Relieving Pain...
Find Out Why Former Chronic Pain Sufferers Call it the "Neck Secret"... That's  Finally Being Published in Medical Journals and Reported By Mainstream Media... 80 Years After its Discovery!
In this article you will find out:     
    The "Hidden" Cause of Chronic Pain That Only A Handful of Enlightened Physicians Understand
    How the position of a small, 2-ounce bone at the top of your neck can be the difference between living in
         Pain... or NO PAIN… and living life to the fullest
    Why This Amazing Discovery Has Been “Swept Under the Rug” by Doctors, Research Scientists and the
         Government... Until Now…
    The Time-tested, Procedures That May Easily End Your Neck Problems Once and For All

    Why Network Television News, “Good Morning America” and other Media are Now Reporting the Critical
         Importance of this Healthcare Breakthrough…
    What You Can Do to Find Out if this “Neck Secret” Could Be the Answer to Your Pain and Misery Right Now
     Everybody knows we’ve got problems with our healthcare system.  No big secret there.  But it’s more than a health insurance problem.  It's an INFORMATION PROBLEM:
      Legitimate Medical discoveries, research breakthroughs, and effective and safe treatments don’t become public knowledge because of politics and greedy corporate financial interest. 
     NeckSecret.com exists to tell you all about what I’m sure you will soon agree is one of the most critical health care breakthroughs in many decades: the discovery of the importance of the Atlas Vertebra
   
The Atlas Vertebra is the name for the small
2-ounce bone at the top of your neck. 
   The Atlas (life-size photo on the left)
is responsible for supporting the weight of your head,
which weighs between 9 and 17 pounds.  
The Law of Cause and Effect
    Over 2,000 years ago, Socrates said we live in a world of law governed by a system of order… whether we understand the principles behind it or not.  He taught people to think logically about the consequences of their thoughts and behaviors.  Everybody knows this today as the “Law of Cause and Effect.”   It simply means that everything happens for a reason… there’s a cause, or series of specific, measurable causes that can be identified.  We accept this scientifically proven fact today, but in Socrates’ day it was a controversial idea—it was one of the reasons he was put to death!  Of course Sir Isaac Newton proved it in physics—that every action has an equal and opposite reaction.
    So what does this have to do with neck pain?
    The happiest, healthiest, most pain-free people are those who’ve searched for and found treatment approaches that focus on CAUSES…not effects. 
    The “Neck Secret” is the proven CAUSE behind much human pain and suffering.  It has been documented and researched at university facilities, and published in professional journals.
    I promise you’ll be scratching your head wondering why nobody has ever explained this to you before, as you read every word of this article.
    The Powerful Little Health-Boosting Secret I Guarantee Nobody Has Ever Told You
     Your BRAIN runs your body. It’s your “power generator”… your “master computer.” Your brain sends electrical and chemical messages back and forth to your entire body…through the top of your neck… at the speed of light… through the spinal cord and the trillions of nerves which branch off of it.
    Your brain tells your body what to do through the nerves. These brain messages pass through the brain stem, located at base of the skull, where the neck connects. The brain stem is where the brain ends and the spinal cord begins. It’s like main “circuit breaker” to your body.
    Every organ and tissue of your body get’s their “instructions” or signals from your brain through the NERVE connections of the spinal cord and the spinal nerves.
Your Brain and Spinal Cord Branch Off As Spinal Nerves That Transmit The Signals Of Life Throughout Your Body
    But there is something very small that can cause a BIG problem for your nervous system.
   The ATLAS VERTEBRA is the name of the first bone of your neck (cervical spine).  It is also known as C1 (Cervical Vertebra #1).  We refer to the Atlas or C1, along with the C2 vertebra (the axis) as the UPPER CERVICAL SPINE.  
    The Atlas is the foundation of your head and the center of balance of your body. It weighs only 2 ounces, yet it supports your head, which is the weight of a bowling ball!  Those anatomists were clever when they named this all-important bone named after the Greek mythological figure, who held up the earth on his shoulders, weren't they?   
    No big secret there; the anatomy of the atlas bone has been long-known.  However the principles of its effects on the body if this little bone shifts out of normal position, were discovered and researched by Dr. B.J. Palmer (1881-1961) of Davenport, Iowa beginning around the late 1920's.
    The ATLAS surrounds and protects the upper spinal cord and  brain stem region.  It sits at the opening of your skull where your brain ends and your body begins. 
    Experts agree that the ATLAS is actually the most important bone in the entire human body. Yet still, so few doctors actually pay any attention to it… unless it’s gets broken!
    If one builds a house, it’s critical to start with a level foundation to support the framework. So when it comes to your body, your ATLAS must be level to support your heavy head above, and keep the rest of the neck below straight.      If your atlas becomes tilted or rotated away from level, your head shifts away from its vertical position, causing the rest of your neck and even lower spine to become out of balance.

If the ATLAS Vertebra Shifts Out of Normal Position...
It Can Cause Total Body Imbalance... and Abnormal Nerve Function!
    What on earth does that mean?
    Your body will be balanced and straight as long as your spinal column is balanced. The most important factor in the spinal column staying straight is having the weight of the head centered over the neck, beginning with the ATLAS bone. In other words…
    “Your Head Needs to Be On Straight”
    Funny as that may seem, this is no laughing matter.  Hundreds of millions of people are likely walking around literally without their heads on straight… and they’ve got the pain to prove it!   When the weight of your head is shifted off center due to atlas misalignment, your body below gets out of balance to compensate for the change.  In an effort to keep the head centered over the neck, the rest of the neck, lower spine and pelvis will twist. Many joints of the spine can get locked up, like a rusty hinge, causing pain and tenderness, swelling, muscle tightness and disturbed blood flow.     
    This body imbalance causes, asymmetrical strain and tension on muscles, joints and nerves from head to toe, making one leg pull up “short.”  This can cause multiple areas of the body to experience pain and dysfunction.  For example, many people who are diagnosed with Fibromyalgia, or suffer chronic headaches—even migraines, have a structural imbalance of their neck as the underlying cause.
    The technical term for misaligned vertebrae, which are causing nerve interference, is vertebral subluxation. This understanding of body imbalance is important for preventative health care as well as crisis care for kids and adults. When there is pain, sickness or suffering, it is critical to check for body imbalance first.
    Living with body imbalance is sort of like driving a car with an unbalanced frame: if you keep driving it, you’ll cause further wear and tear and damage to other systems of the car. And you’ve got to realize that when your SPINE breaks down…so do YOU!
    When your head is not centered, sitting LEVEL over your atlas vertebra… Your whole body twists off center.
Your Head Should Sit Level Right Over Your Neck and The Rest of Your Skeletal Frame Below.   This is called Orthogonal Position (meaning at 90-degree angles)
    One of the major consequences of body imbalance caused by a misaligned atlas is that joints, muscles, ligaments and tendons are overloaded more on one side, leading to unbalanced wear and tear.  This often leads to spinal disc degeneration… bulging… and herniation. It’s a “domino effect.” When your head and neck are out of balance, the rest of your body is out of balance too! 
    When patients see their imbalances on their neck x-rays they often say “it’s no wonder I’m in pain. Well you know what?… I’ll bet that YOUR body has been signaling you that there’s a problem for a long, long time. But you’ve just kept on going, and if you’re like most people, you’ve been covering up the real problem with painkillers and other drugs the doctors give you – which leads me to my next point…
Atlas Misalignment Can Interfere With Normal Function of
Your Nervous System Throughout Your Entire Body
    Your skull protects your brain, and your spine protects your spinal cord. Your spine provides a free channel where the central nervous system can operate inside.  The nervous system is crucial to providing function to every tissue, organ and system throughout the body. Our brain operates a “telephone exchange” of sorts that transmits millions of messages per second back and forth to every part of the body.  When the ATLAS is out of balance with the head and the rest of the spine, it causes the entire spine and body below to twist and shift.
  This causes imbalances to muscles, blood supply and nerve messages which are all vital to the function and regeneration of cells, tissues and organs of the body.
    The long-term result of reduced nerve and blood supply and body imbalance is muscle imbalance, organ dysfunction, and degeneration of different areas of the body, causing mild to severe pain in various areas of the body, lowered resistance to illness, organ dysfunction, loss of mobility in limbs, and ultimately disease.
    Research done through the University of Colorado at Boulder has proven that pressure on a spinal nerve equal to the weight of a feather falling in your hand, can reduce nerve function up to 50%.
    YOU are NOT Superman!
    Your neck is an area of the body where you can’t afford to have an injury go undetected and uncorrected. Do you remember what happened to actor, Christopher Reeve – you know, the guy who played Superman in the movie? He broke his upper neck in a horseback riding accident.  When Barbara Walters interviewed him on TV, he couldn’t breathe or control his elimination and other functions without the assistance of medical machines. He did survive for many years and beat the odds, despite his condition.   The point here is that Christopher Reeve didn’t injure his lungs or his bowels or bladder—he broke his upper neck.  A broken neck can paralyze or kill you immediately.  A very slightly misaligned neck can SLOWLY cause you pain and dysfunction.
                   
Christopher Reeve, Atlas Vertebra Video - A "Must See"

    When Your Neck Isn’t Right… Your Body Isn’t Right!
    It only takes the slightest shift of the bone to irritate the nerves. Remember what I told you about a feather’s weight of nerve pressure?  Do you understand what happened to Christopher Reeve?  You don’t have to break your neck to have major problems…Anywhere in your body!! 
    Your body can’t function without a proper supply of oxygen, food or water. As you're "digesting" this information, you're starting to understand that your body degenerates if it is not supplied with proper nerve and blood flow. This is not something to take lightly because it may affect you the rest of your life.  You don’t want that to happen to you, do you?  It’s pretty easy to tell when your body is not getting enough oxygen, water or food, but you may not realize that you’re suffering from a long-term, dangerous reduction of nerve and blood supply…that is until a crisis occurs.
    Symptoms are the Last Thing to Show Up When There’s a Problem in Your Body
    Remember the “Law of Cause and Effect?”  Obviously symptoms are the EFFECT.  The “Neck Secret” is the simple fact that the ATLAS vertebra can be the CAUSE for many neck problems and various problems throughout the body… and that there is a an treatment guaranteed to amaze you.
    Fortunately there is an entire science dedicated to the diagnosis and treatment of this all-important area of the body.  It is called Atlas Orthogonal.  You now know what the “Atlas” part means.  “Orthogonal” is a math term, meaning “straight” or positioned at 90-degree angles.
    An Orthodontist is a doctor who specializes in getting your teeth straight. 
    An Atlas Orthogonist is a doctor who specializes in getting your Atlas straight with your head and the rest of your neck... to restore your body's ability to transmit healing messages between your brain and body.
    That’s right… there are actually doctors who literally “get your head on straight.” 

    But remember; the Atlas Vertebra is "serious business."  As you’re sitting there reading this article, you have begun to understand how critical your ATLAS is to your health and wellbeing.  Clearly the next step is to learn all about the science of Atlas Orthogonal and the Treatment of the Upper Cervical Spine. 

here to find out how the “Neck Secret” could change your life too.

 If you'd like to ask me a question, email me at: necksecret@gmail.com
I will personally email you back,
usually within 24 hours or less.

Note: I hate "spam" too... your information will never be shared with anyone. 
You will be able to easily remove yourself from my email contact list any time
Thank you for the opportunity to help you with your health needs.
Dr. Donald Liebell
477 Viking Drive Suite 170
Virginia Beach, VA 23452 
(757) 631-9799
(Down the block from Wal-Mart, near the Lynnhaven Mall) 
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Copyright 2009 Donald K. Liebell, D.C., B.C.A.O..

Its a good sign

I have always wondered why people say that they have problems with the left leg, mine has always been the better leg. These past weeks my knee is sore and I cannot straighten the leg, it has something to do with  the two nerves that go down both legs. I think now they are even in their restrictions which to me is a good sign as I think in the past I adapted to keep that leg pain free, but this now is probably how it should have been.
so as i straight the lumber area that these nerves emerge from should rectify in time.

Lyme/Atlas even Candida mentioned

http://www.necksecret.com/Lyme_Testimonials.html 

My progress so far

I decided to discontinue acupuncture as I think my flow/chi is ok now, but I have continued in conjunction with seeing John my chiropractor, go to a physio.

I saw Chiro today and he is greatly pleased with the effect of physiotherapy, as this is all trial and error, we have decided to let Mike or Abbey my physios to just continue to do what their gut reaction is, what they need to do. Its so exciting, its not been plain sailing last time after physio, I could hardly function at all I had to crawl very slowly from taxi to house. but the next day I was very different. I am very careful not to twist or strain in any way to counteract any treatment. Even after seeing John today, I now feel sore and cant do much leg wise, but my upper body is ok. But I now know after sleep, when my body has time to heal I will feel much better.

Progress is still happening, we all just have to go with the flow and see what happens. I just feel so happy as worst is now over.

Lyme/cronic fatigue syndrome/fibromyalgia (interesting)

For Physicians

Ticks

Coinfections

Prevention

Our Stories

Click Here to order our free Lyme Disease Flyer,    Here for our free Lyme Disease Poster ..documents may be copied (to distribute) but edit only for alignment.

5 August 2011

Fibromyalgia, Chronic Fatigue Syndrome and Lyme Disease by Bonnie Gorman RN   Dr Sam Donta presented a comprehensive, compassionate, cutting-edge lecture to Mass. CFIDS/FM Association members on November 3rd, 2002.  His topic was "The Interface of Lyme Disease with CFS and FM: Diagnostic and Treatment Issues."  Dr. Donta is a nationally recognized expert on Lyme disease.  He is the Director of the Lyme Disease Unit at Boston Medical Center and a Professor of Medicine at BU Medical School.  He is a bacteriologist and an infectious disease specialist, who views CFS and FM from that vantage point.  He is also a consultant to the National Institutes of Health (NIH), and presented at NIH's scientific meetings on CFS research.  What does Lyme disease have to do with CFS and FM you might be asking?  Some people believe that Lyme disease may be one of the causative factors in both CFS and FM.  Others believe that some CFS and FM patients are really misdiagnosed chronic Lyme disease patients and vice versa.  Some believe that there is no such thing as chronic Lyme disease, instead these patients actually have CFS or FM.  We asked Dr. Donta to help sort all this out. Parallel Symptom Patterns Dr. Donta presented the symptom lists for chronic Lyme disease, chronic fatigue syndrome (CFS), fibromyalgia (FM), and Gulf War Illness (GWI).  He pointed out the similarities between them, and found there were few differences.  He has treated hundreds of patients with these illnesses.  He found that CFS and GWI have identical symptoms, and FM is only distinguished by a positive tender point exam, that is often positive in CFS and GWI as well.  Clinically it is almost impossible to distinguish or differentiate these illnesses.  He has concluded that chronic Lyme disease is remarkably similar to CFS, FM, and GWI.  These multi-symptom disorders have similar symptom patterns consisting of fatigue and neurocognitive dysfunction, along with numerous other symptoms that probably relate to altered neurological function.  Musculoskeletal symptoms may be more frequent in FM and in some patients with chronic Lyme than in CFS, but the definition of CFS and GWI also includes muscle aches (myalgias) and joint aches (arthralgias).   Lyme Disease Symptoms Flu-like illness, fever, malaise, fatigue, headache, muscle aches (myalgia), and joint aches (arthralgia), intermittent swelling and pain of one or a few joints, "bull's-eye" rash, early neurologic manifestations include cognitive disorders, sleep disturbance, pain, paresthesias (including numbness, tingling, crawling and itching sensations), as well as cognitive difficulties and mood changes.   The only symptom difference in Lyme disease is the expanding circular rash with a clearing area and center resembling a "bull's eye."  He pointed out that Lyme has multiple types of rashes and half of the rashes are not typical, they may not even include the "bull's eye" rash.  They can appear from two day after the bite, then go on for a week or so.  Patients who are infected may not develop or see the rash, and may not develop any future symptoms.  In studies, only one third of the patients were actually aware of their tick bites.  30-50% of acute Lyme disease patients went on to develop chronic Lyme disease.  Additionally, some previously asymptomatic patients may reactivate their infection following various stressors such as trauma, surgery, pregnancy, coexisting illness, antibiotics treatment, or severe psychological stress.  The Lyme vaccine can also reactivate their infection.  Similar triggers such as trauma, surgery etc. are known to precipitate CFS, FM and GWI as well.  This is not a new phenomenon with infectious diseases.  We know infectious diseases (i.e. TB) will reactivate after illnesses or surgery-- any stressor. Dr. Donta reported on the effects of gender on host susceptibility in Lyme disease, CFS, FM and other multi-symptom diseases.  In all these disorders, women appear to be more affected than men, usually at about 2:1 ratios.  He noted that neural cells contain estrogen and progesterone receptors, and that herpes viruses can utilize estrogen receptors to gain access to the reservoir in the cell nucleus.  Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women.  He concluded that gender relationships are known for a number of infectious diseases, so it would not be surprising that such a relationship exists for chronic Lyme disease, CFS, FM and other multi-symptom disorders. Etiology Lyme Disease: A distinct difference between Lyme disease, CFS and FM is that the origin of Lyme is clear.  Lyme disease is caused by spirochetal bacteria transmitted by the bite of an infected deer tick.  This bacteria is the Borrelia burgdorferi bacteria.  It was identified in the late 1900s in Europe.  The US was late to recognize what Europe had described.  Lyme disease was not formally identified by the CDC until 1977 when arthritis was observed in a cluster of children in and around Lyme, CT.  Since that time Lyme disease has been identified in many states.  The CDC reports that it causes more than 16,000 infections per year in the US.  Some researchers feel that the prevalence is higher than that.  CFS and FM: Dr. Donta feels that Lyme disease is an important cause of CFS and FM.  In addition to Lyme, there are a number of other possible causes.  The evidence is still circumstantial though.  Epstein-Barr virus (EBV), the major cause of infectious mononucleosis, continues to be debated as a cause of CFS.  It is uncertain whether EBV can cause symptoms other than fatigue, such as myalgias and arthralgias that are not seen during acute or reactivated EBV infection in patients who are being immunosuppressed, but it remains possible that EBV could cause one type of chronic fatigue disorder.  There are also other herpes viruses i.e. HHV6 that are being evaluated as potential culprits. Dr. Donta reported that recently recognized species of Mycoplasma (Mycoplasma fermentans, Mycoplasma genitalium) have been implicated in CFS, FM and GWI.  These same bacteria have also been implicated as causative agents of rheumatoid arthritis, based on PCR-DNA evidence in patients with these disorders in which 50 percent are found to have the DNA of the Mycoplasma in circulating white blood cells, compared to 5-10 percent of a normal population.  Whether the presence of this DNA represents past exposure or ongoing infection remains to be resolved.  No long-term studies have yet been performed in patients with CFS and FM to determine whether the finding of Mycoplasma DNA persists over months or years or whether such patients have any evidence of other infection such as Lyme disease or infection with Chlamydia species. Central Nervous System Involvement Dr. Donta reported that in Lyme disease, the nervous system seems to be the primary target for the bacteria causing the disease.  Patients with Lyme disease express many neurologic symptoms such as pain, paresthesias including numbness, tingling, crawling and itching sensations, as well as cognitive difficulties and mood changes.  Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAID) have little if any effect on the pain.  Experimental evidence from animal models also affirm the localization of B. burgdorferi DNA to the nervous system.  Dr. Donta postulates that the disease mechanisms could involve inflammatory responses, autoimmune responses or toxin-associated disruption of neural function.  Any inflammatory responses appear to be weak, and there is no compelling evidence that Lyme disease is a result of immunopathologic mechanisms. Commenting on his research, Dr. Donta speculated that if they are correct, and lyme bacteria is a nerve toxin that interferes with the transmission of the nerve impulse, then that is all you need to impede the normal flow of information.  There is a lot of cross-talk in the nervous system.  This toxin will decrease that cross-talk causing delayed responses resulting in cognitive problems-- the brain fog so commonly described in all these multi-symptom disorders.  Although the disease pathways for other possible causes of CFS and FM have not been defined, Dr. Donta postulates that the central nervous system would appear to be a logical target for other pathogens or other disease processes.  These illnesses clearly affect the brain and are bound to cause many neurological manifestations.  Any changes in immunologic function would not appear to be sufficient to explain the various symptoms, and are likely to be secondary to other disease processes. He feels we have been thinking too simplistically about finding whole organisms replicating in chronic diseases.  It is highly likely that there is no single cause for these illnesses.  It's more likely that there are multiple causes-- different organisms causing the same final set of symptoms.  Researchers need a better algorithm to study these fatiguing illnesses.  We need to be more inclusive, rather than trying to separate the illnesses.  Sometimes in medicine, if an illness is too complex to study, research interest dwindles.  We have the technology to do the research, but there hasn't been the will and the momentum to get it done. Clinical Diagnosis Dr. Donta reiterated that the diagnosis of Lyme disease is primarily based on clinical grounds, just as with CFS and FM.  Once other disorders are ruled out, the combination of symptoms over months is sufficient to make a presumptive clinical diagnosis.  The diagnosis of Lyme is made easier if a typical rash is present during the early phase of infection.  After that, it is difficult to distinguish the flu-like illness that can occur a few weeks later, or can recur over a number of months.  Dr. Donta reported that some patients develop severe headaches and an aseptic (infection free) meningitis, which frequently is diagnosed instead as viral meningitis.  If a Bell's palsy occurs (drooping of one side of the face), the possibility of Lyme disease is likely.  If an unprovoked arthritis occurs, causing swelling of a single joint, especially the knee, but sometimes more than one joint, then the possibility of Lyme disease should also be given high consideration.  He emphasized that it is the chronic phase of the disease that causes most problems for physicians and patients, because of the lack of objective signs and the presence of so many symptoms that it causes some doctors to attribute psychological reasons for the patients' symptoms.  Many patients then receive a diagnosis of CFS or FM, when they may have underlying chronic Lyme disease as the cause of their symptoms. Diagnostic Tests Tests for Lyme disease, like tests for other infectious diseases, are often confusing and circumstantial, and their analysis and interpretation has often been flawed.  In infectious diseases you do a Western blot test to see if you have a specific reaction.  Western blot separates out proteins antigens of an organism you are looking for.  It tells you if a person has been exposed.  It is not a direct measurement of the organism.  It is a measurement of whether the person has antibodies to it.  Antibody tests are useful in the early stages of illness as with other acute infectious illnesses.  Once the illness is in a chronic phase, antibody tests are not useful. Just as viruses change from year to year, we know the Lyme bacteria mutates.  There are a number of organisms that can shift their surface protein in a matter of hours and that is how they evade detection and patients test negative.  These organisms attach themselves to proteins and conceal themselves-- creating a cloaking mechanism that defies detection.  This allows them to get where they want to go-- the nervous system.  Once they are inside a cell, the immune system can't see them.  That said, Dr. Donta explained that lab tests have been helpful is some patients with Lyme disease, especially those with arthritis, in whom there are stronger antibody responses than in those with the chronic, multi-symptom form of Lyme.  The criteria for the laboratory diagnosis has been patterned after the arthritic form of the disease, and not the chronic form; as a result, there are many physicians who are misinformed about the test's lack of value in chronic Lyme disease.  The Lyme Western Blot is helpful when it shows reactions against specific proteins of B. burgdorferi, but can be negative in 25-30 percent of patients who otherwise have chronic Lyme disease.  PCR-DNA tests for Lyme in blood, urine and spinal fluid are rarely positive, most likely because the bacteria and their DNA are not present in those body fluids, but inside nerve cells.  Additionally, PCR-DNA studies are very easy to contaminate. In chronic Lyme disease, the MRI exam of the brain is positive in about 10-20 % of patients.  It can show some white spots (unidentified bright objects- UBO) in various areas, similar to those seen in multiple sclerosis (MS), a neurologic disease of unknown cause that has some overlapping symptoms with Lyme disease, CFS and FM, such as the numbness and tingling or paresthesias.  (There are also positive MRI findings in CFS and FM patients as well.) Dr. Donta reported that the brain SPECT scan shows some changes in blood flow to various parts of the brain, primarily the temporal (cognitive processing) and frontal (mood) lobes in about 75 percent of patients with chronic Lyme disease.  Patients with CFS have also been reported to have some brain SPECT scan changes, frequently involving the occipital lobe.  No comparative studies have been made among patients with chronic Lyme disease, CFS and FM.  The mechanisms underlying these changes remain to be defined, but may be due to a mild vasculitis (inflammation of blood vessels) or to a signaling problem within the nerve network of the brain in those specific areas.  It is promising that these changes are reversible in most patients treated with antibiotics that appear to be effective in treating the chronic Lyme disease.  These MRI changes are often slow and may take a year to reverse themselves. These are covert organisms we are dealing with.  We need more direct detection methods for blood, spinal fluid and other body fluids.  How do you detect organisms in spinal nerve roots or brain?  Right now we can't.  Nobody is going to biopsy patients.  We need an illness registry so we can do direct detection studies, particularly of the brain, after death.    Treatment: Persistence Pays Off Dr. Donta reported that there are lots of drugs that are active against the Lyme bacteria in the test tube, but the big question is whether the drug can get to the bacteria?  Lyme bacteria lives in the cells of the nervous system, perhaps other cells.  Dr. Donta has experimented with various intracellular-type antibiotics.  He reviewed his journey through various antibiotics.  After listening to his patients he decided that some antibiotics were better than others.  He then looked at clarithromycin (Biaxin) and azithromycin (Zithromax) which he found had powerful activity against Lyme bacteria in a test tube.  But the antibiotics, by themselves, did not seem to do any good.  He found that you need to change the cellular pH (the degree of acidity or alkalinity), making it more or less acidic, to maximize the effectiveness of the antibiotic.  This allows the antibiotic to work better i.e. doxycycline seemed to work better when the pH was higher.  Dr. Donta has experimented with various agents to adjust pH i.e. amantadine (used to treat flu) and plaquenil (used to treat malaria).  He just submitted proposals to NIH to study various agents to determine which is most effective.  Dr. Donta emphasized that the most important aspect of treatment is that it must be long-term-- 12-18 months, sometimes 24-36 months.  This length is not unusual in the treatment of infectious diseases i.e. TB.  In the first few months of treatment patients can expect an adverse reaction, symptoms will increase and you'll feel worse.  You need to be able to hang in through this period, and allow 3-6 months of a treatment trial to determine if it is working.  The earlier in the disease process that you start on treatment, the more successful it is.  The more chronic the condition the less successful it is, and you'll need to treat over a longer period of time.  This treatment resulted in substantial improvement and cures in 80-90% of patients with chronic Lyme disease.  There are 10-20% who do not respond-- generally those with a strongly positive Lyme test.  Dr. Donta reported that similar results have been found in some patients with CFS and FM of unknown cause, supporting the hypothesis that some patients with CFS and FM have an underlying infection responsive to those antibiotics.  Antibiotic trials in CFS and FM have been limited to one month, a duration that is inadequate to properly evaluate the potential of certain antibiotics to have a positive effect on the disease.  Additional studies, examining both potential etiologic agents of CFS and FM as well as treatment trials should lead to a better understanding of both the cause and treatment of patients with CFS and FM.

midiagnosed with ms not lyme

Lyme disease sufferer spent years being misdiagnosed

Brenda Sterling-Goodwin believes she contracted Lyme disease about 10 years ago. Back then, she was a cat groomer and a veterinary technician.
Doctors in Nova Scotia doubted her condition. One neurologist told her she had multiple sclerosis. It's common, she says, for people with Lyme disease to be misdiagnosed as having multiple sclerosis, lupus, arthritis, or other illnesses with similar symptoms.

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California , Nova Scotia , New Glasgow

Brenda Sterling-Goodwin believes she contracted Lyme disease about 10 years ago. Back then, she was a cat groomer and a veterinary technician.
Doctors in Nova Scotia doubted her condition. One neurologist told her she had multiple sclerosis. It's common, she says, for people with Lyme disease to be misdiagnosed as having multiple sclerosis, lupus, arthritis, or other illnesses with similar symptoms.
It wasn't until she saw the test results from California that she finally had confirmation she was suffering with the disease.
"(Lyme disease) affects everybody differently," says Sterling-Goodwin, a New Glasgow resident.
In her case, the disease has affected her mobility, especially. While she does prefer to walk, she sometimes uses a wheelchair. She's often in pain over the stiffness in her legs, and her feet are swollen to twice their normal size.
Lyme disease is transmitted by a blacklegged tick, after it has attached itself to the skin for 24 hours. Caused by a form of spirochete bacteria, it can be treated with antibiotics if caught early.
There have been eight confirmed cases of Lyme disease in the province since 2002.
"But the only confirmed cases are the ones that meet Canadian standards, which are not the best," Sterling-Goodwin says.
Every three months, Sterling-Goodwin travels to Maine to see her doctor, but she sends him monthly faxes to update him on her condition while between visits. "There are not a lot of Lyme-literate doctors in Canada, unfortunately."
She says "early diagnosis and education" is key. She hopes the news of a Pictou County tick being discovered carrying the disease will heighten awareness.
She adds those removing ticks should exercise caution. Ticks should never be twisted, burned or squeezed. When removing ticks, always use tweezers and pull upwards, she says.
For more information on Lyme disease, visit http://www.lymeinns.bravehost.com/ or http://www.canlyme.com/.