Monday, November 12, 2012

List of Diseases Spread by Deer Tick Grows

Information on a List of Diseases Spread by Deer Tick Grows, Including Malaria-Like Problems and Potentially Fatal Encephalitis

ScienceDaily (Nov. 12, 2012) — An emerging tick-borne disease that causes symptoms similar to malaria is expanding its range in areas of the northeast where it has become well-established, according to new research presented November 12 at the annual meeting of the American Society of Tropical Medicine and Hygiene (ASTMH).

Saturday, September 8, 2012


My doctor followed the JOSEPH J. BURRASCANO guildelines and I feel blessed that he did. I feel great, have a full schedule and no current Lyme symtpoms it will be almost 3 years in remission in October. For information on Dr. Burrascano guidelines follow the link below.

Sixteenth Edition
Copyright October, 2008


Sunday, September 2, 2012


Mis diagnosed as ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica significantly improved when treated for Lyme Disease. Perhaps more aptly described as Multi-Systemic Infectious Disease Syndrome - MSIDS.


Ann Rheum Dis 1990
Research Article
A seasonal pattern in the onset of polymyalgia rheumatica.
M A Cimmino,
R Caporali,
C M Montecucco,
S Rovida,
E Baratelli,
M Broggini
+ Author Affiliations

Department of Rheumatology, Genoa University, Italy.
The seasonal distribution in the onset of polymyalgia rheumatica (PMR) was determined in 58 patients with the disease and compared with that in 44 patients affected by rheumatoid arthritis of elderly onset (EORA). Thirty six (62%) cases of PMR developed during May to August; by contrast, only 14 (31%) cases of EORA developed in the same months, this latter disease failing to show any seasonal clustering. The monthly distribution of PMR correlated with outside temperature and hours of sunshine. These data suggest that PMR might be triggered by such factors as actinic damage of superficial vessels or infective agents with a seasonal cycle. Finally, the summer clustering of PMR may be helpful in the differential diagnosis from EORA.

Hmm! May to August isn't that prime tick sequesting time?
What a thought provoking piece of research shame they didn't consider other epidemiological possibilities. My own illness which was diagnosed as Poly Myalgia Rheumatica turned out to be Lyme Disease. In fact reading about Lyme Disease and knowing the many problems with the vascular system I have to question the Giant Cell Arteritis? But then hey perhaps that is just me adding two and two and making five, what would I know about medicine.

I am just glad that my GP finally realised after 4 years of illness with Fibromyalgia, ME/CFS, arthritis and muscle weakness leading to a Poly Myalgia Rheumatica diagnosis that it was possibly Lyme Disease some months later a specialist confirmed her suspicions. I was treated on long term antibiotics in line with ILADS Guidelines and eventually recovered my health.

I wonder how many patients suffering with Poly Myalgia Rheumatica are properly assessed for Lyme disease especially with the testing being so unreliable.

Read more about it, contact information  and comments

Wednesday, April 25, 2012

Steroids and Lyme Disease a recipe of disaster

Steroids and Lyme Disease a recipe of disaster  A must read article regarding Lyme and steroids

"Steroid Disaster"
Corticosteroids suppress the immune system, the last thing a Lyme patient needs is to lower immunity. Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants and it does!

Corticosteroids can last in the body for months, usually around 6 months. With LD this gives many months for the bacteria to spread, possibly cause damage & according to Dr. Burrascano the prognosis can be much worse.  For the full article and critical information visit


I received this comment on my previous post  ..Bells Palsy and SEVEN negative lymes tests before ....
- they made a very good comment which I would like to share with you..  NO STEROIDS LYMIES!!  
It is true the steroids weaken your immune system and make you more vulnerable and a breeding ground for the Lyme bacteria.

I was diagnosed with Lyme in 2001 but it was not until approx 3 years later when a mainstream Dr gave me prednisone, that I was suddenly stricken by Bells palsy. I learned after that Lyme patients should never receive steroids which can crush the immune system and cause new Lyme symptoms. Not only do I still have Bells but the right side of my face (bells side) pulls and aches. If you dream a line from the top of my nose down to my chin, that entire right side is effected by a pulling down and the pulling gets more intense during the evening. Sometimes the pain is so intense that I put a cream on it made up of lidocane and gabaphentin. Recently I was given a script for a liquid called Pennsaid which is a type of NSAID and seems to be working better than the other. 

Sunday, April 15, 2012

Bells Palsy and SEVEN negative lymes tests before ....

I just recived this comment on an older post I have (January - 2009) and thought that you all should read this in case you missed it. Why am I sharing it here? ....beacuse this happens -A LOT ! If you have a child or your an adult that comes down with Bells Palsy - you need to consider Lyme disease, 60% of all BP patients really have Lyme. Bell Palsy is one of the symptopms of Lyme.

For a more complet list on sympotoms visit this link  

From Jessica
I had bells palsy years ago, and had SEVEN negative lymes tests before going to a neurologist who finally found out I was in 3rd stage lymes disease. It is such an embarrassing horrible thing. Especially at the age of 14 when I had gotten it. But yes....CANNOT STRESS ENUF about repetitive testing. If I didn't agree to finally get a spinal tap, would have taken years longer or never have known and maybe died.
I DID finally recover,after months of staying in the house and hiding from my teenage friends. (I was a ballet dancer and competiton cheerleader- neither of which I would do looking like that)
I still remember going from doctor, and my mother just sitting up at nite crying because she didn't know what was wrong with her only. child... it got to a point where I thought I would b like that forever and got very suicidal. (Which I an positive has something to do w lymes also. I was a VERY positive child and all of a sudden was going from As and Bs to Ds and Fs in school. PLEASE PLEASE KNOW THAT THERE IS RECOVERY.... I AM 100% BETTER NOW, and a happy healthy 34year old women. Good luck to u all and my prayers are wu 

Thursday, April 12, 2012

Dr. Phil Show - Topic Lyme disease

Show to air Friday April 13
Save the date Dr. Phil show to air Friday April 13 - Topic Lyme disease  -If you hike, plein air paint, or basically just go outside this mini clip on this link is a must see.

Here is a preview clip of TV newswoman/ Lyme advocate Brooke Landau being interviewed on the Dr. Phil show about her Lyme experience. Other guests on the show include two additional Lyme patients, Lyme-literate doctor Chitra Bhakta, MD, and the IDSA’s Dr. Paul Auwaerter.    You Tube Clip

Monday, April 2, 2012

Letter from Lyn

Nine years ago I was infected. I knew I was and my doc--federal government--refused to believe me. Over the next 9 years I became sicker and sicker, and was labeled all sorts of psychiatric dx's--"no, you're not must be, that that, must be them", which will dx's will follow me into eternity. I test negative on Western Blot, as many other sufferers do. My doc in USA isolated a biofilm which may be caused by mosquito--some insect anyway and finally I get an antibiotic which I will take for my lifetime, and am prone to infections--I've had a week-duration flue twice since Christmas, and the 24-hour kind once. My doc, who says no one has been cured yet, has a lab and studies ticks from all over; here is the website but clinically I have 100% Lyme. Doc Fry said the antibiotic kills it too. Very slow recovery. My sis died from Lou Gerihig's at 57 and Doc Fry says that is looking like an insect-borne infection too, "maybe two". Difficult to find a doc who is sympathetico to something they cannot see--my docs 'saw' a "low level" infection which they attributed to "you arthritis". I have Osteoarthritis which is not an infection, but it was a good excuse for them.

Tuesday, February 28, 2012

And they say there is No Lyme in Canada?

Rob Manten was camping at the Brant Park Conservation Area near Brantford when he caught a black tick biting him.

He began experiencing what he thought was a bad case of the flu. Daily migraines, fever, nausea, fatigue and a ringing in his ears (tinnitus) accompanied constant aches and pains. He suffered from dizziness and had difficulty concentrating. His family doctor diagnosed a sinus infection.

Over the next six months 18 doctors, internists and neurologists examined Manten as he launched a frantic effort to find out what was wrong. At one point he was told his problems were all in his head. Along the way he was tested three times for Lyme disease, an illness caused by the bacterium Borrelia burgdorferi, which is transmitted by certain types of ticks.

But the ELISA (enzyme-linked immunosorbent serum assay) tests, the standard first-level test for Lyme in Canada, were negative. Most Canadian doctors will not order a second test, called the Western Blot, which some consider more accurate.

Monday, February 20, 2012

Lyme in Australia

I have heard about this over and over again, is that there is no Lyme in Australia... but that's funny I have spoken to quite people down under that have it. Again it is another reason why you need to be your own advocate and not completely rely on your doctors option that there is no Lyme in your area. "Where there are ticks there is the possibility of Lyme".

I received this post from the California Lyme Association: Aussie 6-year-old tests positive for Lyme with blood samples sent to the US. Australian government says no Lyme in their country, so they won't pay for treatment....This is a typical response

A 6-year-old Fern Bay girl is at the centre of a major medical storm over whether a debilitating tick-borne disease exists in Australia.

A 6-YEAR–OLD Fern Bay girl is at the centre of a major medical storm over whether a debilitating tick-borne disease exists in Australia.
Laura France was diagnosed with Lyme disease late last year following tests done on her blood in the US.

Her family and several doctors are convinced she has the illness, caused by a tick bite, but NSW Health disagrees.

The department says the disease does not exist in Australia and will not fund any treatment for it.

The family is paying $3000 a month for medication typically used to treat Lyme.

Laura has trouble walking, struggles to catch her breath, suffers from severe headaches and is lucky to make it through a full day of school.

Michelle France said that at night her daughter had trouble sleeping, cried and complained of constant aches and pains.

‘‘On a daily basis it’s hard, we have had to buy a stroller to get her around, she is exhausted after walking short distances,’’ Mrs France said.

‘‘It’s bad enough that Laura is sick, but the battle to find help has been a nightmare.’’

Since the December diagnosis the Frances have found themselves thrust into an academic battle over Lyme disease, a bacterial infection spread by ticks that has reached epidemic proportions in the United States with up to 20,000 new cases diagnosed each year.

Left untreated it can become crippling. Read the full article

Thursday, January 26, 2012


Please sign this petition.It is so important to millions of people suffering from chronic Lyme disease and their caregivers.

Most doctors have to adhere to IDSA guidelines in fear of the possibility of loosing their license US & Canada (not so much in CA)

Insurance companies do not have to pay much if anything due to the fact that they are only suggested guidelines - leaving the patient with only enough treatment if any to make their condition chronic.

Since some insurance companies pay only a small portion or treatment the out of pocket expense to the patient is enormous. Length of time to Diagnosis Average cost
Less than 6 months $ 34,000
7-12 months $ 68,000
More than 12 months $ 92,000

Most people have no idea that they even have the disease until they are in the late stages of Lyme. It is an average of 7 doctors and 21 months before it is even suspected. I my case it was 1 1/2 years even though I suspected it and requested testing - but they doctors thought it's not here in CA or West Marin. Leaving me to get sicker and sicker and the final cost over $ 150, 000

There are different rules of thought of how to approach treatment, it is extremely difficult to find which one is going to work the best for each patient it really pretty much depends on how long it has gone undiagnosed - the long the time, the longer the treatment

Sometimes I think they just through the tick away - I know out here they don't even send the tick in any longer since they think that it is rare to get it.

I met a nurse practitioner out here and of coarse I had to bring it up as to why they don’t investigate it when a person some symptoms - her response was that they are told that they do not have the nor money to deal with it - needless to say - I was not impressed and I will just leave it there.

One thing that happens by the time you come down with any of the symptoms you may not even remembered that you were bitten – and the sequence of symptoms can happen in such a way that you would not put the two together. Sign the Petition

Yes - there is Lyme in California

PLACER COUNTY (CBS13) – Placer County health officials are warning residents to be cautious after several ticks have tested positive for Lyme Disease in the county.

Health officials say eight tick samples have tested positive for the disease which can cause fever, headache, fatigue and a rash. If left untreated, Lyme disease can affect the joints, hearts and nervous system. Although most people associate tick and Lyme disease with summer months, there has been a population increase since the late fall in Placer County.

“We are concerned that with the milder winter we have been experiencing, a lot of folks will be taking the opportunity to engage in outdoor activities, such as hiking in tick habitat, and potentially putting themselves at risk for tick-borne disease,” said Joel Buettner, General Manager of the Placer Mosquito and Vector Control District.

The District advises residents who may be working or recreating in tick habitat to exercise caution and implement the following tick-borne prevention strategies:
• Wear long pants and long-sleeved shirts. Tuck pant legs into boots or socks and tuck shirts into pants.
• Wear light-colored clothing so ticks can be easily seen.
• Apply a repellent, such as DEET, registered for use against ticks. Always follow directions on the container and be careful when applying to children. Before entering tick habitat, permethrin spray may be applied to clothing to kill ticks.
• Stay in the middle of the trail. Avoid trail margins, brush and grassy areas.
• Inspect yourself frequently for ticks while in tick habitats. Once out of tick habitat, thoroughly check your entire body for ticks up to three days after being in tick areas. Parents should examine their children, especially on the scalp, hairline and skin folds.

For more information on ticks in Placer County, contact the Placer Mosquito and Vector Control District at (888) 768-2343 or visit View Article

2012 Update

To be honest with you - it was an incredible battle to get where I am now.

I approached it as war and not to let up, I thought I would never recover and that it was the end of my world, my life and career. My decision was to go after this full throttle and made the decision that nothing will have the best of me. When possible I was teaching even with a pic-line due to how expensive the treatment is for this disease.

I am in remission - but it is always on my mind and very aware, I don't forget where I have been and hope to share the journey with others in hopes that it can help just one other person. There were times where I thought -God- if I was in a accident or some other event, I just didn't have the energy to pull through it, the fighting takes it's toll. I have always tried to stay positive laughing at the craziness, and the difficulty (still lots and lots of tears and how hard ridiculously hard the fight is to get the right treatment, I even the lab tech that had me in tears because she thought the testing I was having was not necessary - you know what, that is not her job and she was only a tech not a doctor.)

If possible you truly need an advocate but someone that truly understands the disease but how do you find one - so in reality your have to find own way through and it is not easy.

I came to a point where I thought I am done with this disease and "I am not my disease" and not to fall into the victim role which is easy to do after fighting for so long and so hard it has been almost 2 years now and I am doing great, I am making plans for the future and making commitments years in advance and have decided if I end up wit any problems I will deal with the then and not to live in fear.

So many people are afraid to say that they have this disease I am not sure what anyone is afraid about - being labeled what? and I think that is part of the problem because many people still think it is only an east coast problem.

Symptoms - You name it I had it, along with the co-infection of babesia I could have easily listened to the main stream doctors and turned my life over to them and if I did I would not be where I am now.

As far as my Bells Palsy it's going on 5 years years I still try to isolate my muscles and work with the occasionally - it's about 95% better if you didn't know me you would think that is what I always looked like - but alas it is not, I feel fortunate to have what I have and it is pretty darn good. Remember if you are only consider about your face there is always someone else that has it worse.

Nothing about this disease is easy. I wish you all the best and I am here