News you won't see in controlled mainstream media.

Hi everyone,

Just sharing this post that I made on a yeast forum with you all. I'm hoping that it might help someone out there. It was from reading a health forum over a year ago that I originally got the idea that I might need to be tested for Lyme Disease and Lyme Co-Infections. Hope at least someone out there can benefit from my story. Because not only do I suffer from mercury toxicity from all the amalgams I had for so long, I also have had undiagnosed Lyme Disease for a long time.




I Haven't been posting or doing emails or anything. Just have been busy being sick and searching. And over the past 7 months or so had developed the Angry Attitude from Hell about not knowing all the answers. lol For a long time, I have been convinced that everything hadn't been found with me, but didn't have a clue what could else could be going on.

Meanwhile I was busy trying to address newly found weaknesses in my body with other doctors. And have been hoping to one day perhaps try to do a heavy metal detox under the supervision of a knowledgeable doctor. But, I'd been told by my holistic dentist that a detox like that couldn't take place until all existing infections had been identified and treated. And I've been told that in my case, without detoxing some of the surplus heavy metal problems, my candida will not go away or be controlled. Also, my chronic infections will not go away or get under control without eventually doing detoxing some of the excess metals in my body. ugh!

Anyway, although I requested testing for Lyme and Lyme Co-Infections last year, the doctors evidently didn't perform the proper testing. Long story short, I sought out the help of a Lyme Literate Doctor and my tests have come back positive for Lyme Disease. I also have at least a couple of co-infections that are seen alot in Lyme Disease (i.e., bartonella, mycoplasma). My Lyme is late Stage Lyme and it is considered Chronic.

It seems that Lyme is epidemic in the U.S. and it is both epidemic and endemic in my State. It's going largely undiagnosed. :-( Important Factoid: Lyme Disease and Lyme Co-Infections are also all over Europe. Lyme symptoms will mimic mercury toxicity and metal toxicity and also candidiasis. Since I have both candida and mercury toxicity, it was difficult to get to the bottom of everything. Now I know that I have Lyme and Co-infections as well as heavy metal toxicity and candida (and other things!).

My yeast is back and is very bad. My whole-body inflammation is some of the worst the doc has seen. I've got alot of work to do!

Just wanted to let you guys know this info about Lyme though. Especially for those people who have been given multiple diagnoses and have not felt significant improvement over time. Some of the diagnoses that can be possible red flags (and warrant proper testing for Lyme in order to rule it out) are: Irritable Bowel Syndrome, Fibromyalgia, Chronic Fatigue Immune Dysfunction and there are more.

I'm going to be going on aggressive treatment. I'll require antibiotic therapy, plus herbal therapy and everything in between. I'm hoping that permanent damage hasn't been done somewhere in my body for having this so long. I'm going to use an integrated approach, of course. Nothing else could possibly work in my opinion.

I'm positively disgusted with practitioners and doctors, but find that I really need them in order to get access to proper testing, necessary pharmaceuticals and such, and even some of the better, professional quality supplements and herbals.

How come we have to diagnose our own damn selves?! lol It took me about 6 years to find out what is probably the major culprit in my immune dysfunction -- Lyme Disease. But, like so many of you, I've been sick for far longer then just the past 6 years. And then I had to figure out which "sophisticated" tests needed to be done and how to find a doc who knew what they were and how to interpret them. Ugh. I know I'm preaching to the choir here -- you all have been down this road in spades!


Diagnoses I've Received So Far On My Labyrinthian Journey:

Systemic Candidiasis-Candida Related Complex
Late Stage Adrenal Fatigue
Estrogen Dominance
Irritable Bowel Syndrome and Leaky Gut(also two bad bowel bacterial infections- citrobact freundii and C. Difficile)
Chronic Fatigue Immune Dysfunction
Fibromyalgia
Heavy Metal Toxicity
Chronic Epstein Barr Virus (now gone after removing tooth amalgams and root-canaled tooth)
Chronic Mycoplasma Infections
Raynaud's Disease
Loads of Gyn issues and problems
Lyme Disease (also bartonella and mycoplasmas)


For what it's worth, I don't ever recall having been bitten by a tic. Nor did I ever see any sort of bull's eye rash.

Sending everyone here just tons of grumpy love and huggles, lol!
Sharon


p.s. I know I owe some of you long-overdue emails or messages. My Lyme brain has just been a tad difficult and the neurological symptoms are overwhelming. Not to mention the fact that my attitude had been far worse. I owe you deep apologies and hope you'll forgive my selfishness in "being away and out-of-touch." Blessings to all of you dearies.

Your story sounds alot like mine. I was initially diagnosed with lyme by a LLMD although the tests were inconlclusive for lyme. i do have Chronic mycoplasma, candida and two infectious bowel bacterias. I am now removing my amalgams and waiting on heavy metal results. YOu can read more of my story on the post i just made.

It seems like alot of people who are chroncally ill have lyme, mercury, other bacterias, viruses and candida all playing a part. But i think you are corect in saying that unless mercury is chelated then the other stuff will not be resolved.

Joe

Joe, LOL! We were posting at the same time and said nearly the same thing to each other. <img src="/ubbthreads/images/graemlins/kewldance.gif" alt="" />

Are you being treated for your Lyme and Mycoplasma? Having "inconclusive" tests for Lyme is common. The testing can be controversial and it really requires a clinical diagnosis by a doc. I was clearly positive on a couple of my tests.

I'm under the impression that we really need to treat these infections and make that a priority. And along the way work on removing sources of poison (i.e., amalgams) and then detox, etc.

Those neurological symptoms (as well as the others you shared) sound so familiar to me!

While I don't have my amalgams any longer, I still need to address my heavy metal problem. But the first order of business will be to try and treat these serious infections, bolster my body with vitamin therapy, diet therapy, herbals, and any other modality or therapy that will help and as soon as the folks on my "team" feel I can handle an detoxing, I'll get to work on that.

Just hang in there. I know how frightening it can be to feel so exhausted and also have the mental/neurological symptoms. And I'd venture to say that many of the kind people on this Forum will be able to relate as well!

Sharon

Gee Sharon, why does that not surprise me...well at least you have another diagnosis that will hopefully lead you closer to a cure.

I will second all of the above. In Canada, drs or nd's don't talk about Lyme's disease or they don't think it exists, or they pretend it doesn't. I haven't heard of one diagnosis in the news, or maybe they are keeping it well hidden....or maybe it hasn't "spread" here yet...I am starting to believe it is spread by other means than ticks. Duh, I probably have it too along with other parasites and fungus and bacteria that cohabit synergistically with heavy metal toxicity and cause chronic degenerative diseases down the road. I think that is what causes cancer, metals break us down and then the opportunists take over.

I remember thinking that it is so funny that so many folks on the Yeast forums have Lymes' and then I learned the connection between hmt and yeast and other opportunistic organisms, and subsequently read to successfully treat Lymes, you have to get rid of the heavy metals first.

Then you take a person that has cancer from hmt and give them chemo with more heavy metals and really finish them off fast. And now I face more toxic therapy, but this time they promise no heavy metals, but I don't think so. I would rather die with my mind and soul intact.

I bought a quad zapper and some parasite killers, and a whole bunch of herbal teas, hopefully, I can prolong my healthier days with treatments like that...at least until my youngest son comes for a visit in 2 weeks.

Nice to see you back online Sharon, just come when you can, I disappear for days too, and am always welcomed back.

Best luck on your journey back to health. <img src="/ubbthreads/images/graemlins/chainofhearts.gif" alt="" />

best love,
Sandi
xoxo

Ok everyone.
I just got a positive Lyme test back from IgeneX.

Lyme is mercury's evil twin and sad to say I'm starting to believe many here probably have Lyme as well.

I was tested last year by a local lab here in NY and it was negative.

I got the test done by IgeneX and it's positive, but negative by CDC standards.

Sounds like the CDC like to keep their Lyme numbers nice and "low".

I really don't like the feeling of being a gov't experiment do you? <img src="/ubbthreads/images/graemlins/smilieprotest.gif" alt="" />

Interesting article.
http://www.drmyhill.co.uk/article.cfm?id=361

Hi Veggimom, this must be a real revelation to you. I'm sorry that its turned out to be positive, but I wonder how many others have the same thing or something similar.

My virus/bacteria infection that I assumed was gotten by an infected mascara (due to the eye infection and later development of brain and body symptoms), coincided with me having mosquito bites too and pretty severe ones, but I never knew which was responsible.

The reason why I decided the infected eye cosmetic was, was simply because it started in the eyes and I had been doing the stupid thing and watering down my mascara, which one should NEVER do. On top of this, the infection spread to every other eye cosmetic, so I assumed that's what it must have been...

But I do wonder. It's not very good that they don't have a conclusive test for lyme, leaves people fumbling in the dark... I wonder if it might be a good idea to try cat's claw, not just for suspect lyme, but for any kind of infection similar to it? Then again, Cat's claw is potent and some have very bad reactions to it....

These infections are almost life destroying. Even mercury didn't do this to me. At least with mercury, I had hopes of detoxing and improving over periods of time. This is different. I could also control candida more with mercury than I can with this thing. WIth what I have now? Candida is almost impossible to control.

Veggiemom,

While I'm terribly sorry that you've been pushed into the "Lymelight", you must feel a bit relieved to finally have an answer. I know I felt that way when I was diagnosed.

And I agree with you, I strongly believe that there are many, many people (even on this board) who have "tick borne diseases" like Lyme and have been undiagnosed, or have tested negative on the worthless preliminary blood tests. A local doctor here has said publicly many times that millions of people are being misdiagnosed -- that is, they have undiagnosed Lyme and have instead been told that they have some other illiness (i.e., lupus, MS, chronic fatigue, fibromyalgia, ME, rheumatoid arthritis, etc.).

I put "tick borne diseases" in parenthesis because it is now known that Lyme and all the co-infections (i.e., babesia, erlichosis, mycoplasma, bartonella, etc.) can also be transmitted by other biting insects such as, mosquitos, horse flies, other biting flies, biting mites, etc.

That was an outstanding article that you found and I hope that some of our UK friends here will read what you posted. I noted that Tracy said that she teated negative for Lyme, but I doubt they did the proper testing.

Bex, given how long you've been ill, I can't stress enough how important I think it is for people to get GOOD Lyme testing done. If anything, it should be done for the sole reason of eliminating it as a factor in ongoing chronic illness.

My Lyme Doc says that heavy metals, candida and Lyme go together. I'm going to be treating everything at once. Treating these individually will not heal me because they will not leave my body. All of it must be treated.

I tested CDC negative. That was just a plain-Jane bloodtest that looked for antibodies and it was using the very stupid standards that the CDC uses. The CDC and our FDA have already warned practicing doctors here that they MUST NOT rely on CDC standards in diagnosing Lyme patients. THe CDC standards are very high and they are only used in tracking the illness and for surveillance.

Doctors have been warned that ultimately Lyme MUST BE a clinical diagnosis. Testing can be unreliable but there are some better tests then the "CDC" test that can be done.

I tested CDC negative. But my Igenex test came back positive. Also, my CD57 test came back positive as well and it indicated that my Lyme is Late Stage and now chronic. Because of that I'm in for a very long road to recovery.

Here are some Lyme Symptoms:

SYMPTOM LIST
Some Of The Many Symptoms of Lyme Disease Are:

Head, Face, Neck: Headache Facial paralysis (like Bell’s palsy)
Tingling of nose, cheek, or face
Stiff neck
Sore throat, swollen glands
Heightened allergic sensitivities
Twitching of facial/other muscles
Jaw pain/stiffness (like TMJ)
Change in smell, taste

Digestive/excretory System:
Upset stomach (nausea, vomiting)
Irritable bladder
Unexplained weight loss or gain
Loss of appetite, anorexia

Respiratory/Circulatory Systems:
Difficulty breathing
Night sweats or unexplained chills
Heart palpitations
Diminished exercise tolerance
Heart block, murmur
Chest pain or rib soreness

Psychiatric Symptoms:
Mood swings, irritability, agitation
Depression and anxiety
Personality changes
Malaise
Aggressive behavior/Impulsiveness
Suicidal thoughts (rare cases of suicide)
Overemotional reactions, crying easily
Disturbed sleep: too much, too little,
difficulty falling or staying asleep
Suspiciousness, paranoia, hallucinations
Feeling as though you are losing your mind
Obsessive-compulsive behavior
Bipolar disorder/manic behavior
Schizophrenic-like state, including hallucinations

Cognitive Symptoms:
Dementia
Forgetfulness, memory loss (short or long term)
Poor school or work performance
Attention deficit problems, distractibility
Confusion, difficulty thinking
Difficulty with concentration, reading, spelling
Disorientation: getting or feeling lost

Reproduction and Sexuality
Females:
Unexplained menstrual pain, irregularity
Reproduction problems, miscarriage,
Stillbirth, premature birth, neonatal
Death, congenital Lyme disease
Extreme PMS symptoms
Males:
Testicular or pelvic pain

Eye, Vision:
Double or blurry vision, vision changes
Wandering or lazy eye
Conjunctivitis (pink eye)
Oversensitivity to light
Eye pain or swelling around eyes
Floaters/spots in the line of sight
Red eyes

Ears/Hearing:
Decreased hearing
Ringing or buzzing in ears
Sound sensitivity
Pain in ears

Musculoskeletal System:
Joint pain, swelling, or stiffness
Shifting joint pains
Muscle pain or cramps
Poor muscle coordination, loss of reflexes
Loss of muscle tone, muscle weakness

Neurologic System:
Numbness in body, tingling, pinpricks
Burning/stabbing sensations in the body
Burning in feet
Weakness or paralysis of limbs
Tremors or unexplained shaking
Seizures, stroke
Poor balance, dizziness, difficulty walking
Increased motion sickness, wooziness
Lightheadedness, fainting
Encephalopathy (cognitive impairment from brain involvement)
Encephalitis (inflammation of the brain)
Meningitis (inflammation of the protective membrane around the brain)
Encephalomyelitis (inflammation of the brain and spinal cord)
Academic or vocational decline
Difficulty with multitasking
Difficulty with organization and planning
Auditory processing problems
Word finding problems
Slowed speed of processing

Skin Problems:
Benign tumor-like nodules
Erethyma Migrans (rash)

General Well-being:
Decreased interest in play (children)
Extreme fatigue, tiredness, exhaustion
Unexplained fevers (high or low grade)
Flu-like symptoms (early in the illness)
Symptoms seem to change, come and go
Other Organ Problems:
Dysfunction of the thyroid (under or over active thyroid glands)
Liver inflammation
Bladder & Kidney problems (including bed wetting)


Hugs,
Sharon

P.S. By the way, Bex, Cat's Claw is used in treating Lyme. It was using Cat's Claw for another ailment last Spring and my extreme reaction to it that tipped me off that I might have Lyme. When Lyme patients use Cat's Claw it can cause some powerful Herx Reactions. It has to be used very slowly.

My Lyme Doc has placed me on another type of Cat's Claw, along with a bunch of other meds, herbs, etc. I'll be using an integrated healing approach which will include antibiotics, herbals, homeopathics, vitamin/nutritional therapy and I.V.'s, oxygen therapy, physical therapy and rehabilitation -- the whole nine yards.

Hi Sharon, thank you so much for that extensive post. Wow! Well, I can say I have most of the symptoms, but again they coincide with so many other things too like candida/mercury and the list goes on.

I have had this problem since 2003. I live in New zealand, so I didn't think it likely to be lyme. I do not know about ticks? The only thing I know is oneday I had a tickling, moving sensation in my lower leg. And I kept looking down and seeing nothing but a strange looking small dark freckle that I don't recall having before.

I ignored it, but finally I couldn't and kept looking down and couldn't see it moving, but could feel it. I picked away at it and whatever it was, was under the skin and I did get it out, but didn't know what it was.

Again, so many things could have occured that might have been responsible for this chronic and permanent infection, that it's mind boggling! Perhaps it was a combo and all hit me at once.

I do most definitely have light sensitivity, so bad I have trouble driving sometimes. I have exercise intolerance and if I do it, I get symptoms of acute virus, like sore throat, fever, swelling in the eyes and glands, flushing of the face, coughing, worse mental symptoms, extreme exhaustion and basically become incapacitated. I have no real ability to control candida....

So who knows what happened? Mercury I definitley had, could that have made me vulnerable to all these things and in the end one thing after another got me. When I first developed the infection, I had problems with going off-balance, had chill like sensations and movements going through the head area (brain?), and then body. I slurred my speech and had trouble typing or writing. Everything slowed down. But then other things happened later, like horrible fears, no protection against external toxins (it would get me in the brain almost immediately). I felt like I had a form of meningitis, or just like the blood brain barrier protection area had been damaged. Just amazing what happened.

If anybody is interested, I just found this yahoo group on the net.
http://health.groups.yahoo.com/group/lymestrategies/

They talk about a Salt and vitamin C way of addressing Lyme and believe it's more effective than cat's claw (samento)...But after what you said Sharon, I am interested in trying a bit of cat's claw, just for curiosity sake to see if there is any herx type reactions....I just do not have the money to get full treatment or seeing a doctor ongoing for this.

Perhaps I can get some testing, I dont know.

Bex,

Lyme can be transmitted via ticks, via mosquitos, via horseflies, via other biting flies, via biting mites, etc. And people with Lyme don't necessarily even remember a bad insect bite or reaction to a bit with a rash of any kind (bulls-eye or otherwise). I certainly don't remember ever seeing a tic on my body nor having a rash. Yet, I'd been sick for many, many years and I think I've had Lyme symptoms for about 9 years. The symptoms have gotten progressively worse. And again, from what I've read and have been told by my Lyme Docs, candida, mercury toxicity and Lyme problems are seen together alot.

New Zealand does have Lyme. I tried to do a search to found out what sort of reporting had been done. I know the first reported case of Lyme was in 1982. But I got tired looking for further info. SOrry.

I have read information that states that Lyme is epidemic in some countries. A good place to start reading might be the International Lyme and Associated Diseases Society. They have a really good downloadable brochure that explains the difficulty in testing and also explaining what tests to ask for.

http://www.ilads.org/brochures.html

I find it very interesting that you describe some of your symptoms as having a meningitis-type feeling. That's significant. I think if a Lyme Literate Doctor heard you say that, he'd wanna test you right away to rule out Lyme Disease. Lyme can present with meningitis-type symptoms!

ANyway, I hope people don't think that I'm all about Lyme, All the time, 24/7 and just because I"ve been diagnosed with it that I automatically think everyone must have it as well.

I just want to convey to people that this disease is being treated very much like the mercury problems. The medical profession is trying to ignore it and pretend it isn't there. There is a tremendous amount of internal conflict and downright vengefull fighting going on amongst doctors on the issue of diagnosing and treatment Lyme. ANd the patients are the ones suffering.

There is alot more Lyme out there than people realize. I mean heck, President Bush has been treated for Lyme last year and we Americans weren't even told about it.

For people with chronic illnesses, I think they all should be evaluated for Lyme in an effort to either confirm or exclude.

Huggles,
Sharon

Let me know if you'd like more info. There are some good support forums online who will help in locating docs who will do the proper test.

There is also information on the various types of Lyme therapies that people are doing -- both traditional and herbal protocols.

P.S.S. Here is a good primer for info on Lyme as well. It's a tv news series that was done by a reporter in the U.S. in Virginia. She has Lyme and is trying to raise awareness. I wish she'd gone into more detail on all of the symptoms. But she does help explain the difficulties in testing (the good tests vs the bad tests) as well as the difficulties in the two disparate Treatment Guidelines between the Infectious Disease Doctors and the International Lyme and Associated Disease Society.

After the research I did, I made sure that I found myself an ILADS doc.

Here it is, and the video reports are in 3 parts, starting with Lyme Controversy, 1:
http://www.wset.com/external.hrb?p=lyme

SS: How did you find an ILAD doctor? Thanks, G

glanina, on the ILADS website there is a section and link where you can look up LLMD's (Lyme Literate MD's). http://www.ilads.org/

I also posted questions in the Searching For Lyme Doctor on a few Lyme Forums and got a ton of suggestions there as well. If you're interested in finding an LLMD you can inquire here: http://flash.lymenet.org/ubb/ultimatebb.php

They won't disclose the Lyme Doctor's complete names on the Forum. But members will send you information via private messaging on the Forum with complete information. Lyme Doctors have come under some pretty harsh treatment by insurance companies in particular. So, Lyme patients are very protective of their doctors now.

SomedaySoon (Sharon)

p.s. I have more links on Lyme if you or anyone is interested. I'm sure VeggieMom has a ton of links as well!

Apologies to everyone, but I'm simply bumping this thread up in the Forum here for easier viewing. Some friends of mine who are suspecting Lyme and metal issues in their families were wanting to read this thread and are not yet familiar with navigating this Forum.

Sharon

"I tested CDC negative. But my Igenex test came back positive. Also, my CD57 test came back positive as well and it indicated that my Lyme is Late Stage and now chronic. Because of that I'm in for a very long road to recovery." (SomedaySoon)

Hello again SomedaySoon: I tested negative also on standard test at my Doctor's Office. However, there were a couple strands showing even in that test. Do you think I should spend the $390 out of pocket to get a more sophisicated test, and which one would you recommend? And, is it better to do this after chelating for a year or two, as it sounds like you can not successfully beat it being heavy metal toxic?

Thank-you!

TW

TW,

I can't stress this loud enough to you: GET TESTED AGAIN!!!!!

Standard testing for Lyme Disease and Lyme Disease Co-Infections is very unreliable and up to 75% of the public can test negative but still be sick with Lyme Disease.

Even the higher caliber Lyme tests are unable to test for all strains of the pathogen (borellia) that causes Lyme Disease. Ultimately it really needs to be a clinical diagnosis which is made by a doctor who is familiar with and treats Lyme. These doctors are known as Lyme Literate Doctors ("LLMD").

The Western Blot blood test by Igenex is the blood test of choice for LLMD's in diagnosing Lyme Disease. Here is a link to their website: http://www.igenex.com/lymeset7.htm

My regular doctors wouldn't do this test so I had to find an LLMD and consult with him to rule in (or out) my suspicion of Lyme Disease.

Another test that is sometimes helpful is the CD57 blood test that is done by LabCorp. It can help indicate whether a patient has late-stage or chronic Lyme Disease.

Here is a link to a guy with Lyme who keeps a personal website. This link will take you to his page on testing. He lays out the testing better than I can do at the moment:

http://www.betterhealthguy.com/inde...ask=view&id=54&Itemid=76

I've said this before, a LOT of people that end up with Lyme Disease have no recollection of having a tick bite or a bull's eye rash.

Lyme Disease is epidemic in the United States. Those aren't my words, they are the words of Departments of Health, CDC, NIH, etc.

I paid for a fair amount of my Lyme (and co-infection) testing out-of-pocket. I was happy to do so. Doing so finally gave me answers.

I would NOT put off getting tested for Lyme Disease. It can progress to a far more serious and debilitating illness if left untreated.

The metal detox can be addressed but DO NOT delay getting tested Lyme. If you do have Lyme (and Lyme co-infections) your body could be so busy trying to deal with the Lyme that metal detox could be disrupted or nonproductive.

Sorry to sound so bossy. I just wish I'd known 10 years ago what I know now. I can't begin to tell you the debilitating and life-altering and even devastating effects this illness has had on me -- simply because it went undiagnosed for so long.

You don't sound bossy to me SomedaySoon! I really am glad to be able to read people's experiences and learn the easy way instead of suffering alone the hard way.

I have been investigating Lyme a bit, and I took your test names Igenix and CD57 in to my Doctor. I showed her and we decided to just run the standard test for now, though we both agreed it wouldn't be conclusive. Well, it came back negative, but it did show some strands there, so????

Now, I guess I will proceed, but I think I will research a bit more, and I really don't know how much my doctor knows about Lyme. She is very helpful, but I may need a Lyme Literate Doctor - here we go again, why is all of this so hard? Doctors who don't know mercury poisoning, now Doctors who don't know Lyme????

<img src="/ubbthreads/images/graemlins/aaarggh.gif" alt="" />

Thanks,

TW

Lyme disease is on the increase here in the UK. THe daily mail had a story on it on Friday about a woman suffering from brain symptoms. People here have it and dont know,i really havnt worried about this because i havnt been bitten by a tic but other insects can give you it also.
Does anyone know where we can get tested for this in the UK. Thanks Dawn

hi Dawn,

We have the same situation here in the US. Millions are infected and they don't even know it. To make matters worse, the possibility of Lyme Disease infection isn't even on the radar of most doctors. And the testing for Lyme Disease and Tick Borne Ilnesses is not very good. So many people get false negatives. That is, they are truly infected with Lyme and sick from it but the tests show as negative. My Lyme Disease was misdiagnosed for ten years. It wasn't until I consulted with doctors who are considered Lyme Aware or Lyme Literate (i.e., Lyme specialists) that I finally got my answers.

I think it's important to know that we don't have to recall being bitten by tick. They are so very small and they can bite and release without us having to pull them off. The nymph (baby) tick can bite people without them knowing and transmit Lyme Disease. The tick in the nymph stage is no larger then the period at the end of a sentence.

Also, as you wisely said, there are other biting insects that are transmitted these diseases. Mosquitos, biting flies (such as horse flies, sand flies), fleas -- have all been found to transmit Lyme Disease and the Co-Infections that go with it.

Lyme Disease is on the rise all over the globe, actually.

As far as seeing a doctor to get tested to rule Lyme Disease out of the equation, I don't know what's being done in the UK. I have heard many UK patients having their blood work sent to the USA for testing. Ultimately, the diagnosis needs to be a clinical one. The doctor will take into account the patient's history, symptoms, testing, etc.

There are other illnesses in addition to Lyme (borrelia) that are being transmitted. ALthough they are known are tick borne illnesses, as I said, they can be transmitted by other vectors. Some of the co-infections that are transmitted and frequently seen along with Lyme Borrelia are Bartonella, Babesia (a type of malaria), Erhlichiosis, and Rocky Mountain Spotted Fever.

I evidently had my Lyme Disease for a long time and we believe I was re-infected again in the Summer of '05 from a biting sand fly. I have been diagnosed with Lyme Disease, Babesia and Bartonella. Docs think I also had Erhlichiosis as well but that it was treated sufficiently with a rather long course of antibiotics I received back in '05.

I will be in treatment for a long time because this disease went so long without being diagnosed.

I don't ever remember being bitten by a tick, by the way.

I have been posting information on Lyme Disease and Co-Infections in the Lyme DIsease forum section. There is information on symptoms, diagnosis, treatment, etc. Here's a quick link to the Lyme Disease Forum of Herb Allure so you don't have to scroll down and look for it:

http://tinyurl.com/3qz5ko

I will post a link an paste an article from the UK in a new posting box on this thread so you can read further. It lists some possible places on the internet where you might find resources and information for testing and diagnosis in the UK.

Sharon

Hi Dawn,

In addition to what I said in my post immediately above, here is a link and a pasted article on the issue of Lyme in the UK:

http://www.drmyhill.co.uk/article.cfm?id=361


Lyme Disease (borreliosis) and CFS - the practical aspects

The author of this article is a highly intelligent anonymous sufferer whose research is endorsed by myself.

Many people in the UK with ME/CFS who are now being tested privately are finding they are infected with bacteria from the Borrelia species that cause borreliosis or Lyme disease. It wouldn't be surprising if a very significant percentage of those currently with a diagnosis of ME/CFS are actually infected with Borrelia or similar bacteria. An email group poll showed that 80% of those with a diagnosis of borreliosis or Lyme disease had a previous diagnosis of ME/CFS.

Borreliosis and Lyme Disease

Borrelia is the name of a group of bacteria, of which there are many species, over 300 I believe, some of which are pathogenic. Borreliosis is the name of the disease caused by infection with these bacteria. Lyme disease has a narrower definition and can only be caused by 3 strains of Borrelia so it can exclude many people with long term illness caused by the other strains of the bacteria. The terminology used to define infections caused by Borrelia is not clearly defined. Lyme disease and borreliosis are often wrongly used interchangeably in the literature and sometimes the terms "Lyme borreliosis" and "neuroborreliosis" are used. Although the term "borreliosis" would be far more appropriate, it is seldom used in the UK, which is why I often refer to it as "borreliosis/Lyme".

Lyme disease was first recognised in the USA in 1975, when an outbreak occurred in Lyme, Connecticut, USA . The Borrelia bacteria were only discovered in 1982, which is one of the reasons why many people, including doctors, don't know much about it.

Some people who have borreliosis/Lyme have co-infections with other tick-borne pathogens such as babesia, erlichia or bartonella, and these cause illness too. Babesia are malarial-like protozoa which infect red blood cells, while the others are bacteria.

More about Borrelia

Borrelia bacteria are very large spirochaetes with a long thin spiral type shape and are similar to those causing syphilis. They can exist in several different forms including a dormant cyst, a motile spirochete and intracellular cell wall deficient forms. The spirochaete is able to change to a different form when a threat occurs (e.g. from the immune system or antibiotics) making it very difficult to eradicate. Borrelia can rapidly invade every type of tissue and every system in the body causing havoc in the host. Many symptoms are caused by Borrelia as it causes the immune system to produce cytokines (chemical messengers that help to regulate the immune response) and it produces many biotoxins, mainly neurotoxins, which are attracted to many areas of the body such as the central nervous system, peripheral nerves, muscles, joints, lungs etc.

A main source of Borrelia infection is by a tick bite from an infected tick. Just one bite is all you need from an infected tick - this is only the size of a pinhead and may go unnoticed by the victim. If you read the literature on Lyme, it often refers to the American Deer Tick as being the source of infection, but in the UK the main vector is the Sheep Tick. It's small creatures like mice and birds which are natural reservoirs for the infections in the UK and it is they who provide the first meal for the newly hatched baby ticks. However, any animal could have ticks which carry Borrelia, including pets. Migrating birds can carry all sorts of bugs and infected ticks from other countries and continents, such as Africa.

It is not just ticks that can transmit the infection. Any biting insects such as mosquitos and fleas are now believed to be able to carry and transmit Borrelia, too. It is possible that Borrelia bacteria can sometimes be transmitted from mother to baby via the placenta, in breast milk, between sexual partners, and also by blood transfusions, though this is not yet widely accepted and more evidence is required. Borrelia has been isolated in human body fluids such as semen, tears and urine, in unpasteurized cow's milk and even found in African dust.

There are 3 strains of Borrelia defined as causing Lyme disease, but there are also other strains which are pathogenic. In the USA it is Borrelia burgdorferi sensu stricto which causes Lyme disease, while in the UK and Europe it is B. burgdorferi ss, B. garinii or B. afzelii. B garinii is thought to cause more neurological symptoms than B. burgdorferi ss and B. afzelii is thought to cause more cutaneous symptoms.

Ticks in the UK are infected with Borrelia

Many UK doctors don't know that you can get infected with Borrelia from ticks in the UK. The Natural History Museum tested many of its UK specimen ticks (PCR testing) and found between 8 and 97% were infected depending on the species of the tick. Some of the specimens were 100 years old. Another study from Swansea showed 30% of ticks in woods in South Wales were infected with Borrelia and 7% with a co-infection erlichosis. It can only take one tiny tick bite from an infected tick for a human to become infected - a bite that goes totally unnoticed more often than not.

Symptoms

Some people get a bull's eye rash after a tick bite, which is a classic symptom of Lyme disease, but not everyone does. The symptoms of borreliosis/Lyme can be the same as ME/CFS, e.g. painful joints and muscles, brain fog, memory problems, headaches, flu-like, neurological symptoms, stiff neck, numbness, tingling, extreme fatigue, fibromyalgia, sleep problems, neurally mediated hypotension, noise or light sensitivity and many more. Like ME/CFS, there is a vast array of symptoms, but not everyone gets all of them. Borreliosis/Lyme can also mimic other diseases such as multiple sclerosis, lupus and motor neurone disease.

Some people get symptoms of borreliosis/Lyme within a few days or weeks of a tick bite, but for some it is much longer, even years. The symptoms can be cyclical and they are often worse in women around the time of menstruation. As with ME/CFS some of the symptoms may vary from one day to the next in an unpredictable fashion. Some people get the illness more mildly or more severely than others. If it is left untreated some people may go on to develop long term or life-long severe debilitating illness. Some people can go into remission after a period of time, only for the disease to recurr at a later stage - this is because the bacteria can change into a dormant cyst form and then change back again into the spirochaete form when the time is right, for example when the person is stressed or immunosuppressed.

The literature about Lyme disease often refers to early stage disease and late stage disease (often called late Lyme). The early stage may have fewer symptoms such as flu-like, malaise, headaches, joint and muscle pain and/or fatigue and with or without a bull's eye rash. This rash is called localized erythema migrans and may occur a few days before the other symptoms. Its not very clear cut though and some people may get many more symptoms early on, including neurological ones. The spirochaete has been shown to enter the central nervous system within 12 hours of entering the blood stream. If the illness is left untreated, it can progress and become a chronic multisystem disease within a few weeks or months. Some people, however, may just develop the symptoms of this late stage without having or recognising an early stage. For example, some may only have mild early stage symptoms and just think it's a cold or a bout of flu, without realising what it really is. All too often the early stage, which is so much easier to treat, goes unrecognised and untreated, as some people do not get a rash or do not notice the tick bite. In fact, even if a tick bite is reported to a doctor in the UK, the doctor may well not realise its importance. Some people may go into remission after the early stage, even if it is left untreated, and maybe just forget about it. The illness, however, can recur in its chronic late form weeks, months or maybe even years later. It's the late stage of the disease that all too often goes undiagnosed in the UK as standard NHS tests are usually negative by this time and it's often the symptoms of this chronic stage that can be misdiagnosed as ME/CFS.

Its quite possible that those who are chronically infected with borreliosis/Lyme also have collateral conditions which may give additional symptoms.

Evidence has shown that the hypothalamic-pituitary link is malfunctioning causing pituitary suppression. Pituitary and endocrine abnormalities could be quite common.
It is possible that the cellular hormone receptors may be blocked. For example, thyroid receptors could be blocked resulting in symptoms of subclinical hypothyroidism. This implies that blood testing may not pick up the hypothyroidism as there will be more thyroid hormone in the blood and less in the cells due to the receptor blockade.
Magnesium deficiency is also often present, which can give rise to several symptoms.
Deficiency in vitamin B12 could also be present.

Diagnosis and testing

In the early 1990s the United States Center for Disease Control (CDC) set up a definition of Lyme/borreliosis for an epidemiological study into this disease.

These narrow rigid criteria have been followed throughout the world ever since. More recently the CDC revised these guidelines, which now clearly state that these criteria are NOT intended for diagnostic purposes and that patients must be primarily diagnosed by clinical symptoms. Despite this, the new advice seems to have gone unheeded resulting in many cases going undiagnosed, especially late/chronic ones.

The original outdated guidelines are still rigidly adhered to in the UK. Most UK doctors, including Infectious Diseases specialists, are UNAWARE that:-

- the illness can be spread by factors other than ticks. This is not indicated in the new guidelines as it is not widely accepted yet.
- ticks in the UK can carry and transmit Borrelia.
- different strains of Borrelia which are defined as causing Lyme disease can give different disease expressions. One of the common strains in the UK, B. garinii, tends to cause more neurological symptoms, while another common strain found in the UK, B. afzelii, tends to cause more cutaneous symptoms when compared with B. burgdorferi ss, which tends to cause more arthritic symptoms. Although this is mentioned briefly in the CDC guidelines, much of the literature about Lyme disease refers to symptoms caused by B. burgdorferi ss, which is commonly found in the USA.
- there are more strains of Borrelia that can cause illness than those defined to cause Lyme disease.
- the illness should be diagnosed by clinical evidence rather than by tests alone since these are not reliable enough.
- if a bull's eye rash occurs, treatment should start immediately without testing, as tests may be negative in the very early stages.
- an active infection can exist when there is a negative serology test.
- there can still be an active infection when symptoms persist or recur after antibiotic treatment.

Most NHS doctors do not understand the pathophysiology of borreliosis/Lyme and seem unaware of its extremely diverse symptoms. The illness is fairly new in the medical world and so is poorly described in medical textbooks.

In some Eastern European countries where it is endemic, they diagnose borreliosis/Lyme by symptoms but in the UK doctors won't normally do that, in fact most wouldn't even know what to look for. NHS doctors in the UK rely on highly unreliable two-tier antibody tests to diagnose borreliosis/Lyme. First they do the Elisa test and if that is negative, the patient is deemed not to be infected - end of story. If the patient is fortunate enough to get a positive Elisa test, a Western Blot test is then carried out - this is just as unreliable as the first test and excludes even more infected patients! Some people may be positive for the Western Blot but not the Elisa, but they would never be tested. Apparently, the UK Western Blot tests don't test for every strain of Borrelia, even all those pathogenic strains found in the UK let alone those contracted overseas, but many doctors, even Infectious Diseases specialists, don't realise this. The UK tests may pick up some cases but would miss many many more - maybe more than 90% are missed. There are many people who have been found negative with NHS tests and positive by other private testing.

The above indicates that there could be many misdiagnosed cases of borreliosis/Lyme in the UK, especially chronic ones. All too often people with chronic active infection are fobbed off as having post-Lyme disease or ME/CFS.

Antibody tests for borreliosis/Lyme are highly unreliable for a number of reasons, some of the main ones being:-

- Borrelia infections cause malfunctioning of the immune system. Co-infections only add to this.
- The infection can go into cyst, form which reduces the immune response.
- The infection can go into intracellular cell wall deficient form, which cannot be detected by antibodies as there is no cell wall.
- The antibodies are in immune complexes, and so cannot be detected by the test.
- The spirochaetes can be encapsulated in host tissue (lymphocytic cell walls) and thus hide from the immune system. I've seen them described as wolves in sheep's clothing.
- The spirochaetes are deep in the host tissue, especially tissue with a very poor blood supply.
- Recent infection - before the immune response has taken hold.
- The disease is in the late stage. Those who are chronically infected very often have negative antibody tests.
- Recent treatment with various drugs, including antibiotics and anti-inflammatories.
- Factors which cause immunosuppression.
- Lab techniques.
- The lab does not test for the strain. The UK Western Blot does not test for every pathological strain, even all those found in the UK, let alone those found abroad.

The only decent tests you can do at the moment are private. These are costly and include:-

- The Bowens test in the USA, http://www.bowen.org . This is an antigen test, ie they actually look for the Borrelia rather than antibodies to it and they also test for co-infections at no extra cost.
- The Igenex tests in the USA, http://www.igenex.com . Igenex do a Western Blot test that may sometimes give a false negative as it looks for antibodies but it is far better than the UK Western Blot and may sometimes help convince doctors that you have borreliosis/Lyme, though not all will believe it. They also do PCR tests.
- There is also private blood microscopy to test for Borrelia-type bacteria done in the UK. I think there is a considerable waiting list for this.
- Someone in the UK is trying to set up PCR tests (looking for DNA fragments of Borrelia) and cultures - these will be a while yet - private again I'm afraid. It is very very difficult to culture Borrelia, which is why it isn't detected by NHS bacterial culture tests.
- There is also the Acarus vet's lab in the UK which can test humans for babesia, a co-infection, as some pets are diagnosed with this.

Testing is important so you know what infections you've got, so you can at least begin to get doctors to believe you have a treatable disease. However, if tests are negative the illness should not be ruled out if you have the symptoms. The CDC state that "there is no reliable test for Lyme disease at this time".

Information on borreliosis/Lyme

Details of tests and information on borreliosis/Lyme can be found on the links/files on the Eurolyme and Infections groups.

http://health.groups.yahoo.com/group/Eurolyme - for patients and professionals.
http://health.groups.yahoo.com/group/ME-CFS-FMS_infections

Other useful sources of information on borreliosis/Lyme are:-
http://www.lymenet.org - this site is actually recommended to UK doctors
http://www.ilads.org - for health professionals

Treatments

Details of possible treatments are all in the files of Eurolyme. "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" by Dr J Burrascano is a good starting point. There are various antibiotic treatments for borreliosis/Lyme, what suits one may not suit another. The illness is much easier to treat in the early stages, the longer a person has had the illness the harder it is to treat. It may not be completely curable in long term chronic cases, but there are a growing number of people much much improved after treatment with long courses of antibiotics. Some people are lucky and can get their GPs to prescribe the antibiotics, but many have problems and have to pay privately. All too often, especially when prescribed by NHS doctors including infectious disease specialists, the antibiotics are given for too short a time or too low a dose to eradicate the bacteria fully. Some people who have babesiosis as a co-infection (similar to malaria) need an expensive antimalarial drug costing approximately £700 a month for several months and the NHS are refusing treatment on the grounds of cost. A consultant was willing to prescribe drugs privately to one person with Lyme disease, but not on the NHS.

At the moment there are a few of us, including myself, on Samento (TAO free cats claw), an immune modulating herb. Apparently some of us are doing well on Samento, and some are not, but it's early days yet. Some people need to take the herb for quite a long time before symptoms start to improve. More information on Samento can be found on http://www.samento.com.ec (also has some information on borreliosis/Lyme) or http://www.samento-faq.eu.kz .

The Marshall Protocol is fairly new, so it's early days yet, but it has potential. There is a website, http://www.marshallprotocol.com . For this protocol benicar, known as Olmesartan or Olmetec in the UK, is given in high doses to suppress inflammation which allows antibiotics to work better and be given in lower doses. Some people with CFS are being helped by this and again some are not. There was an article on http://www.immunesupport.com not so long ago. Some are getting benicar on the NHS, some are not, it depends on the doctor. "Lyme Disease (Borreliosis). A Plague of Ignorance Regarding the Ignorance of a Plague" by Scott Taylor which can be found in the Eurolyme files also covers this protocol.

Discussion

Many people get bitten by ticks in the UK, therefore the studies showing that many ticks in the UK are infected with Borrelia, together with the possibility that Borrelia may be passed on from person to person imply that every year in the UK there could be thousands of cases of borreliosis/Lyme, a treatable disease with similar symptoms to ME/CFS and for which the NHS has very inadequate testing and diagnostic techniques.

The problem in the UK is that most NHS doctors will usually only go by highly unreliable UK NHS tests. Even if you get a positive result from a reputable private test, most NHS doctors will just ignore this, although a few may go by it. Even if you have a positive result from a UK test, its quite possible you won?t be prescribed antibiotics by an NHS doctor for a sufficient length of time to completely treat it. There are many reasons why antibody tests may not give a positive result. They don't rely just on antibody tests to diagnose other infections such as syphilis and TB, so why should they for borreliosis/Lyme? They don't mind treating those with antibiotics, why not this infection?

Borrelia bacteria are prevalent in temperate climate zones and borreliosis/Lyme is known to be endemic in some other European countries and also other parts of the world. The UK has a temperate climate, so surely it is quite possible that it is endemic here. After all, ticks, insects, birds and animals do not understand geographical boundaries. Also many people go on holiday abroad, and now the pet passport has been introduced pets go abroad too.

Two CFS research studies done by MERGE showing vascular abnormalities and increased neutrophil apoptosis also support the theory that those with ME/CFS could have an ongoing infection.

Private testing in those with ME/CFS can also pick up treatable infections, other than those caused by Borrelia and its common co-infections, that are not picked up by standard NHS testing. For example infections caused by mycoplasma, rickettsia, protozoa, onchocerca and many more.

What we need is for research to be done to show that those with ME/CFS have an infection - NOW. People should not be having to pay for their own treatments and tests. Once it is proven many people with ME/CFS have an infection, hopefully all the psychobabble stuff will fall out the window.

The author has had ME for several years and has been recently diagnosed as having borreliosis.

thankyou sharon for all this info. im going to look into getting tested for it.
I did have a bulls eye rash once,it was about 13 yrs ago, it was a mystery to me because i was in a night club at the time and came home and saw it on my leg, this could be nothing but it has been on my mind since knowing about the bulls eye rash.
Anyway this is interesting
http://curezone.com/forums/am.asp?i=1137007
Dawn x

Hi dawn, and hello to everyone else,

Ive not been online for some time.

Dawn i really think you should get tested, having a bullseye rash is certainly enough for diagnosis,

A update on my situation, i posted on here a while back about me,Thinking maybe i have lyme disease. I got tested about a year ago at igenex. my results came back negative.
Only about 2 months ago i thought about getting tested again,
GUESS WHAT!!! its come back positive...

Im now taking Certin, 500mg, 2 times aday. And i must say i feel like s**t. But in so glad i now know what ive got..

If you decide to get tested, and i think you should!

Theres DR DAVID OWEN IN CARDIFF. thats who i went too!

http://www.drowen4lyme.co.uk/

He will give you a referal letter,sol you can have tests taken at igenex. Cost of tests was about £200, and £40 24hr fedex.

Results take about 2-3 weeks..

There's also the breakspear hospital

http://www.breakspearmedical.com/files/lyme-disease.html

Humaworm and lyme disease, personally i think it would have little effect.
If you have had lyme for years, you will probably need to take antibiotics for over a year.

Smitho,thanks so much. il get in touch with the royal breakspear hopital and try and get tested, it is nearer than cardiff for me.
Dawn.

I just found they have a online shop, where they can send the kit out to you, instead of having to see them,


http://www.breakspearstore.co.uk/search.php?mode=search&page=1

though in your case i think it would be better to see the specialist in person, because they may need to check for
co infections..Depending on your symptoms. plus they dont seem to offer the pcr test online

Igenex will normally test blood, serum, western blot IgG and IGM western blot and PCR,

Then if these show a negative, they then test your urine.

Dawn,

If you ever had a bull's eye rash, then you had Lyme. If you were never treated for it and you are experiencing chronic illness, then the chances are high that you have Lyme Disease. It can sometimes go dormant for decades, only to resurface after times of physical/emotional stress. Or it get re-appear seemingly without reason .... or

People can remain with an active Lyme (borrelia) infection for decades.

Once the disease is allowed to disseminate throughout the body and remain it can become chronic. And that makes testing and treatment more difficult. That's the situation I'm in.

If you have a chance, please read some of what I've posted in the Lyme Disease section here so that you can have some knowledge of what this is all about. You'll get far more out of a doctor's appointment that way.

I strongly urge you to get tested and evaluated by a Lyme Literate doctor. If you should happen to test negative on the U.S. Igenex testing -- it does not mean that you don't have Lyme Disease or any Co-Infections. You can read more about all that in the Lyme DIsease section of the Forum.

One thing is certain though ........ Bull's eye rash = Lyme Disease.

Sharon

p.s. Smitho, I'm sorry to hear about your diagnosis! I'm right there with ya, though. Treatment has been extremely difficult but I'm plodding forward. There are quite a few of us here on the Forum who have this terrible disease.

The docs I have consulted here insist that there are millions (yes millions) of people like us. We walked around for ages either occasionally feeling poorly, had seemingly non-specific or unconnected symptoms of other diseases, and some of us became incapacitated and quite ill -- only to find out that it was really Lyme Disease all along.

I would never have gotten my diagnoses if I hadn't learned about all this on my own and sought out the help of Lyme specialists.

Lyme Disease and heavy metal toxicity seem to be seen alot together, also.

when i heard about the bullseye rash i remember feeling sick with fear but immedietly put it out my head.

Sharon

thanks for all of the information. I want to see a doctor but am in the NE of England so I can't although I have heard that Dr Munro travels. I really need to see a doctor about my thyroid which needs treatment now but I don't know what i can take without adrenal support which all have steroid in and those with Lyme must not take steroid. I am also having liver and digestive problems worsening all of the time.

I did not have a rash or remember a bite, but 9 years ago I went walking through some woods and i wore sports sandals with no socks. I suddenly became ill, very seriously ill, but through environmental illness all of my life, just assumed it was that but that it had worsened due to moving into a brand new house with load of chemicals. Now I can see that there were new symptoms and they were Lyme's symptoms and all of the things I have done for my health since then have not made much difference though they helped.

hi Dawn,

I don't know what to say. Sending you warm huggles, dearheart.


hi Mati,

I know what you mean about feeling like you have so many health issues to work on and how treatments seem to conflict with everything!

Just thought I'd share while my thyroid so far is fine, my adrenals are not. Testing revealed that they are quite decisively exhausted. I'm having to treat this condition. RIght now I'm taking Cortef in Physiological doses (i.e, small doses that are only enough to support what my body should be making on its own but is not able to). I'm also having to use other supportive measures to help my adrenals heal.

My metal issues in addition to carrying chronic Lyme and candida infections for so many years, coupled with stress, is probably what caused my adrenals to crash and burn. Without treating everything, nothing will recover. I have to treat my infections, treat my adrenals and when my body can handle it, detox the metals.

The International Lyme and Associated Diseases Society (ILADS) has been sharing information with doctors at all of their conferences in meetings about the need to support adrenal/thyroid issues. Many patients do need small doses of Cortef or some combination of herbs/vitamins (with or without Cortef depending upon cortisol levels). And while it's true that large, pharmaceutical doses of a steroid will make Lyme worse, physiological doses when testing shows that it is needed will not. Many Lyme patients simply will not recover without at least some temporary adrenal support.

Once chronic infection is treated and has gone into remission, then the adrenals will not be in overdrive.

There is a really good explanation of this in a book that just came out. It's called "The Lyme Disease Solution," by Dr. Ken Singleton.

Hope this helps!

Sharon
p.s. Environmental illness can be caused by so many things, I know. But for me, my environmental sensitivities really became unmanageable when my Lyme appeared.

Sharon

Thanks so much for that information. It is what i really needed to know. I think I will go for ACE first. Yes me too, my environmental sensitivities went haywire after the Lyme's if that is what i have. I am wondering if i should make an appointment with Andrew Wright now. I had an e-mail from Dr P today and he says that glandulars do not have any active adrenaline in but this is not what my body told me. I was really wired up.

Hi Dawn, smitho, mati and anyone else out there in the UK,

I found this UK website. Thought it might be of help for people interested in being evaluated for the possibility of Lyme Disease and also for people who have been diagnosed with it. The link is for the Lyme Disease Action group in the UK. Thought it might help you all with UK information, testing, finding doctors, treatment options, etc.

http://www.lymediseaseaction.org.uk/

Sharon

Thanks Sha