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Live Webinar April 18 Dr. Rawls Q&A

I don't know about this doctor, but may be a good resource for those of you with questions about Lyme disease. For instance today I was contacted by someone who's girlfriend had bell palsy 9 months ago and was suffering from shear exhaustion, stuttering and had cognitive problems, part of my response to him was for her to get tested for Lyme... .it is spring...so watch out for those nasty creatures.

Live Webinar April 18 Dr. Rawls Q&A

Lyme Awareness Month

Pretty much sums it up

I don't know how much things can get better but I am one that always keeps keeps a positive attitude and keeps trying. I know that there is only so much we can do, but  my thought is since it is now 7 years later I would try acupuncture with electrical stimulation again. The difference this time is that it is a little painful when I get the needles, due to many of my nerves have finally come back to life (which is good) but the muscles on the left side of my face have atrophied a bit, with the electrical stimulation we are trying to exercise the muscles.

This time I have a different doctor, Dr. Wang and he is using pretty big needles (not baby needles as he calls it), baby needles won't do anything. I have had positive response from people that have seen me, which does surprise me that they can even notice, it is so subtle.

I still feel pulling but it also helps me to be aware when I try to isolate muscles. I try to smile or pucker and relax my eye instead of everything pulling, a lot of work but why not give it a try.

Bells Palsy 10 years later

In 2007 I got Bells Palsy, my diagnosis, I would never recover. 

Most people recover within 2-4 weeks, at three weeks I was just starting to get a tiny hit of movement in my lip. When I would see people and children looked at my face with shock and I would always explain what happened. Men that had known me cried, and I couldn't understand why (not much for self-esteem)  I thought I "MUST" look like a monster. But now, I think more then that, they cried because they were afraid it would affect my personality, I am always so upbeat, happy, smiling and now one side of my face was frozen with my left eye wide open.

I always knew I had character but ...really...did I need more?

From 2007 - 2010, I went through periods of acupuncture, physical therapy, macro electrical stimulation and

things greatly improved, but it was an extremely slow, slow process, I would say that I about 80 - 85% recovery. 

Due to the expense of the Lyme treatment and my concern that the over stimulation sometimes caused spasms, such as a "jokers smile", (which horrified me) I would take breaks from the electrical stimulating of the muscles and nerves and knowing that the nerves grew so slow I decided that I needed to give up treatment on my face and focus on the treatment of the Lyme disease. 

Now 7 years later, I feel that I have given my nerves time to grow and am now starting acupuncture again to see what happens.

Ticks in Alaska

In the past three years, Beckmen has found at least two other types of ticks that have taken up residence in the Last Frontier and appear to be here to stay: the American dog tick and brown dog tick. Both ticks have been found on dogs or cats that have never left the state, a sign the parasitic arachnids can — and are — surviving in Alaska.

Wildlife disease specialists also say the establishment of new ticks in Alaska poses a risk to all sorts of wildlife, from caribou to coyote to fox to moose to Sitka black-tailed deer to wolves.

“Everybody needs to stop being in denial,” Beckmen said. “Ticks are spreading north. There is transmission going on in Alaska.”

Beckmen rattled off a list of diseases that could be introduced in Alaska as a result of ticks. They included Lyme disease, Rocky Mountain spotted fever, canine ehrlichiosis, canine babesiosis, anaplasmosis, tick paralysis and tick fever.

Read Full Article

Lyme in Alaska

There have been several cases of imported Lyme disease in Alaska. The most recent involved an eight year old white male who visited Fauquier County, Virginia on June 23, 1991. He spent the day playing in the woods and afterwards was noted by his mother to have four ticks, including one which was engorged, on his body. The ticks were identified by a local resident as "deer ticks", likely Ixodes damini.

Approximately 10 days later his mother noticed a raised, red, circular area near the sight of one of the tick bites on the nape of his neck. This grew to a maximum diameter of 8 cm. and then faded over several weeks. There was no central clearing of the lesion. On returning to Alaska near the end of July, the child was described as being more moody, particularly more fussy and depressed.

On August 9, the child was brought to a local physician for a draining ear which was treated with a topical antibiotic. After hearing the history of an annular skin lesion, moodiness, and recent tick exposure,  See More

Do you have questions? Need help? Have medical billing problems? Check out these services. Not free, but maybe worth it for you 
.
To view link http://www.healthcareadvocates.com/

UNF Researchers Make Big Discovery About Lyme Disease

The belief that only black-legged “deer ticks” can transmit Lyme disease has been widely publicized for decades. Lyme disease risk has been calculated largely based upon the prevalence and infection rate of these “deer ticks. Clark’s findings, together with past studies implicating lone star ticks associated with Lyme disease, suggest otherwise.

View article
 http://news.wjct.org/post/unf-researchers-make-big-discovery-about-lyme-disease

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).

More information 

JOSEPH J. BURRASCANO JR., M.D. DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME

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.

DIAGNOSTIC HINTS AND TREATMENT

GUIDELINES FOR LYME AND OTHER

TICK BORNE ILLNESSES

Sixteenth Edition

Copyright October, 2008

JOSEPH J. BURRASCANO JR., M.D.

Link

http://www.lymediseaseassociation.org/images/NewDirectory/GuidelinesControversy/BurrGuide200810.pdf

LOOKING AT LYME DISEASE - MSIDS

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.

POLY MYALGIA RHEUMATICA

http://ard.bmj.com/content/49/7/521.abstract

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.
Abstract
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

http://lookingatlyme.blogspot.com/2010/03/poly-myalgia-rheumatica.html

Steroids and Lyme Disease a recipe of disaster

Steroids and Lyme Disease a recipe of disaster  A must read article regarding Lyme and steroids: http://www.lymenet.de/literatur/steroids.htm


"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 http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=14

NO STEROIDS LYMIES!!

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. 
NO STEROIDS LYMIES!!  .

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 http://bellspalsylymesdisease.blogspot.com/2009/04/lyme-symptoms.html  


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 

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.

http://lymedisease.org/news/lyme_disease_views/dr-phil-lyme-preview.html

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

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 this...you must be that....no, 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 http://www.frylabs.com/ 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.

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.

Read the full article

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

PLEASE SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!

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