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» LymeNet Flash » Questions and Discussion » Medical Questions » Help, please!

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Author Topic: Help, please!
susanschn
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My 77 year old mother had a tick attached to the back of her ear for a week. During that week she began having a very stiff neck. That is the only symptom she has had, but it is severe and has lasted almost a month now. She cannot move her head and walks all bent over. Before this tick bite she has had uncontrollable diarehea for six months and was diangosed with Irritable Bowel Syndrome and began taking lotronex. She lives on a farm with a wooded area and she routinely picks ticks off of her outdoor cat when he comes in. This is the first time she has been aware of a tick biting her. My father is a deer hunter and says he has had many tick bites over the years, but never had any symptoms. They live in Pensacola in Northwest Florida and Lyme's Disease is not a huge problem there. She keeps thinking that her stiff neck will get better, but it has not.

She finally went to see her arthritis doctor today and he agreed her neck is very stiff. She has arthritis in her spine but never before in her neck. He gave her two injections at the pressure points, plus a prescription for Methylprednisolone dospak (a steroid) and a muscle relaxer called skelaxin. After the injections he did some sort of blood tests for lyme disease and CBC plus xrays for her neck. He told her to use moise heat and come back in a week and if she is not better, then he will send her to an infectious disease doctor. Her diarhea has returned and her gastro-intestinal doctor has told her to increase her lotronex. She felt a little relief tonight.

Is there anything more or different that she might do at this point? Should she be starting to take an antibiotic as a precaution or wait until the tests come back and then go to a different doctor? How long is it safe to wait to begin the antibiotic treatment, if she does have Lyme's Disease?

Thank you for any tips you might give based on your experiences. Has anyone had an experience similar to this?

Posts: 34 | From Florida | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
TF
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Member # 14183

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Here is a quote from p. 12 of the Dr. Joseph Burrascano lyme treatment guidelines:

"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."

So, don't let her take anymore steroids of any kind. So, don't let her take that prescription, for example.

A stiff neck is an EXTREMELY common lyme disease symptom. I had it. Many, many of us have it. See the list of symptoms on p. 9-10.

Notice "stiffness of the joints or back."

Lyme also gives the person what doctors think is arthritis. It is known as "lyme arthritis."

Check all the symptoms your mother has.

The lyme disease tests that regular doctors do are so inaccurate that they are useless. Only a lyme doc will know a good lab to use to test for lyme. And, a good lyme doc will treat your mom based on her tick bite history and symptoms, not based on any lyme test in the world. That is because many, many people test negative for lyme when, in fact, they have it.

Read through the Burrascano guidelines to learn more.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

What's good about reading it on-line is you can use the "search" function to look up any word that is of interest to you--like "steroid" or "neck" for example.

The quicker you get treatment for lyme disease, the better. There is no "safe" amount of time you can wait. The longer you wait, the longer it will generally take to get rid of the disease.

I suggest you post in "Seeking a Doctor" and make the title of the post "Need Lyme Doc Closest to Pensacola, Fla." or something similar. Then, people in that area of the country will come along and give you the names of some good docs.

There are very few lyme docs, and hardly any in Florida, so expect to travel, probably out of state. Sorry, but that's the way it is with this illness.

And it is nothing to ignore. It will just get progressively worse, affecting the brain, the entire body. The symptoms will just continue to pile on. This includes intellectual losses, emotional problems, psychlogical problems, as well as strange physical problems and usually lots of pain.

Oh, and finally, do not go to an infectious disease doctor. They are actually the worst docs for a lyme patient to see! They yell at us (happened to me), say we don't have lyme (did that to me, even with my positive lyme blood test), and refuse to treat us. This is the experience of almost every single person on LymeNet. So, skip that step and go right to the lyme expert.

Infectious disease docs are the specialty that is SUPPOSED to treat lyme. They think they know this disease, but all they know is the propaganda the medical establishment puts out about lyme. And, they believe it adamantly, so there is no sense seeing one.

Good for you for looking out for mom. Wish you the best.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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welcome susan! glad you got my florida list ok.

could you do us neuro folks a favor and break up your long, solid block text to a maximum of 6 lines ok? please use my guidelines ...we neuro patients thank you and look forward to helping you when you help us too! [Smile]


Welcome; i'm so glad you found us!! You've come to the right place for education and support!


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @

http://www.ilads.org/lyme_disease/treatment_guidelines.html


Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


this link, making the most of your LLMD visit, may help you also.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005


please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you!

http://tinyurl.com/Bettyg-NEWBIE-PACKAGE

***************

please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber
print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.


Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.

please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.

now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.

NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.

IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""

[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox

then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND

we thank you for helping us; [Wink] otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
------------------------------------------------------

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
*******************************************

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susanschn
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Thank you, Betty! Sorry for the long sentences. I just get carried away. I'm really worried about my mother.

I'm also not good with the computer skills and I have never used such a conversational site before. It is most helpful and I'm trying to learn how to navigate it.

Thank you for all of your information. I really appreciate your taking the time to reply.

Posts: 34 | From Florida | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-

Susanschn,

So that more people can read your first post, I'm reformatting it with more white space. Many here have problems with their eyes and this will help you get more readers and more answers.

-----

ORIGINAL POST by Susanschn:


My 77 year old mother had a tick attached to the back of her ear for a week.


During that week she began having a very stiff neck. That is the only symptom she has had, but it is severe and has lasted almost a month now. She cannot move her head and walks all bent over.


Before this tick bite she has had uncontrollable diarehea for six months and was diangosed with Irritable Bowel Syndrome and began taking lotronex.


She lives on a farm with a wooded area and she routinely picks ticks off of her outdoor cat when he comes in. This is the first time she has been aware of a tick biting her.


My father is a deer hunter and says he has had many tick bites over the years, but never had any symptoms. They live in Pensacola in Northwest Florida and Lyme's Disease is not a huge problem there. She keeps thinking that her stiff neck will get better, but it has not.


She finally went to see her arthritis doctor today and he agreed her neck is very stiff. She has arthritis in her spine but never before in her neck.


He gave her two injections at the pressure points, plus a prescription for Methylprednisolone dospak (a steroid) and a muscle relaxer called skelaxin.


After the injections he did some sort of blood tests for lyme disease and CBC plus xrays for her neck. He told her to use moise heat and come back in a week and if she is not better, then he will send her to an infectious disease doctor.


Her diarhea has returned and her gastro-intestinal doctor has told her to increase her lotronex. She felt a little relief tonight.


Is there anything more or different that she might do at this point?


Should she be starting to take an antibiotic as a precaution or wait until the tests come back and then go to a different doctor?


How long is it safe to wait to begin the antibiotic treatment, if she does have Lyme's Disease?


Thank you for any tips you might give based on your experiences.


Has anyone had an experience similar to this?


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-

I agree with TF's advice:

"So, don't let her take anymore steroids of any kind. So, don't let her take that prescription, for example."


That could be very damaging for her. She needs to find a Lyme Literate Medical Doctor as soon as possible. (LLMD)


I am not sure what was in the pressure point shots she received but she needs to find out if that was a steroid of any kind and the exact name and dose amount.


When she calls for her LLMD appointment, she needs to tell them about the shots and about the tick in her ear for a week.


I'll post some of the reason why she needs that particular kind of doctor and NOT an infectious disease doctor because they do not know much about lyme or the necessary treatments.


Best of luck to you and to your parents.


-============


Some of this about steroids is a repeat of what TF posted - and some additions:


-

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


Dr. Burrascano'sTreatment Guidelines (2008)


P. 4:

. . .

More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.


This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids.

. . . .


From page 12:

Excerpt:

. . .

More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.


Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.


If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.

. . . .


===============


http://www.lymenet.de/literatur/steroids.htm

Antibiotics and Steroids


by John Drulle, M.


Excerpt:

. . .

Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.


. . . .


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-

www.anapsid.org

Lyme symptoms list


=================


www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


From the May 2007 issue of Clinical Advisor


CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)


As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

Excerpts:


Meet the players


The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)


and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )


IDSA maintains that Lyme disease is relatively rare, overdiagnosed, difficult to contract, easy to diagnose through blood testing, and straightforward to treat ( www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html - Accessed April 6, 2007).


ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)


especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).

. . .

" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."


`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.


"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."


. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.


- Full article at link above, containing MUCH more detailed information.


-===


Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.


==========================


www.jneuroinflammation.com/content/5/1/40


Persisting atypical and cystic forms of Borrelia burgdorferi and local inflammation in Lyme neuroborreliosis


===========================


This article has much attention on both lyme and Cpn:


http://tinyurl.com/preview.php?num=64y3rv

(then clink "PROCEED TO THIS SITE")


May 2008 Volume 39 Number 5 LABMEDICINE
www.labmedicine.com - American Society for Clinical Pathology


CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES

- by Garth Nicolson, Ph.D.

===========================


AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):


www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


- cont'd at link.

Printable version: www.ct.gov/ag/cwp/view.asp?a=2795&q=414284&pp=12&n=1


===============


TESTING

You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:

www.igenex.com

IGENEX

-----

There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).


========================


VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077


===========

TREATMENT

www.ilads.org

ILADS

The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.


links to treatment: http://www.ilads.org/lyme_disease/treatment_guidelines.html


and

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Dr. Burrascano'sTreatment Guidelines (2008)


=====================


www.lymediseaseassociation.org


Lyme Disease Association


- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.

This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.


=====================


http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=029917


treepatrol's - Topic: Newbie Learning Help Links 5/21/08


=======


http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=069262


Topic: BettyG's NEWBIE PACKAGE, 7.19.08, with TABLE OF CONTENTS FOR ALL!


======


Find your local SUPPORT GROUP for help in finding a doctor, etc.

www.lymenet.org/SupportGroups/UnitedStates


======


Post in: SEEKING A DOCTOR

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=2


======


This book, by an ILADS member LLMD, holds great information about treatments options and support measures:


http://tinyurl.com/6lq3pb (through Amazon)


THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com


=====================


http://tinyurl.com/5crsjv


Cure Unknown: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com


==========================

FILM:

http://www.underourskin.com

UNDER OUR SKIN


DVD is $40. and worth every penny. It explains a lot.


-=====================


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=020605


MAKING THE MOST OF YOUR LLMD VISIT


From Melanie Reber


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-

Now, after all that, if it takes a while to get into a LLMD, your mother might ask that doctor's office what they suggest. She could be asked to be placed on the list in case someone else cancels.


Ask the LLMD if taking Garlic capsules (or Allicin ) - or Olive Leaf Extract -would be of some help. You would get the very best quality of either one or both at a local health market.


Oh, for the diarrhea, have your mother get some organic coconut oil and take a couple of teaspoons of that. Carob powder will also help. Coconut macaroons help as well, but it's best to avoid sugar with an active infection.


Cutting wheat out of her diet may also help the bowel problems.


Ideally, your mother's doctor should be able to help you. However, no doctor can be trusted who gave steroids to a patient who likely could have lyme.


If she has ANY doctor in her life who would prescribe doxycycline ASAP, that would be best. If she develops a bulls eye rash, she should be able to get the abx (antibiotics) based solely on that but they would not likely give her treatment for long enough.


If she does develop a rash of any kind, take photos for future doctors' appointment.


You also need to know that the lab where her tests are being done may not do the correct tests. There was more about that in the articles above.


Again, the very best of luck to all of you.


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
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great answer TF

you got right to the really impt stuff first-there is so much info it is so hard on newbies

good luck susan

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
   

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