LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » 3 months wait to see LLMD

 - UBBFriend: Email this page to someone!    
Author Topic: 3 months wait to see LLMD
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've only been sick for 1.5 months (tick and rash 2.5 months ago) and I'm already frustrated. You people that have been through so much are amazing!

I wrote here a few days ago and got a list of doctors. I called today and there are waits of at least 3 months with anyone that has good feedback and only slightly less for those without much feedback at all.

I made an appointment (Dec 8th)and got on the cancellation list in hopes of getting moved up.

I am going to my GP again tomorrow in hopes of getting tested through Igenex (not holding my breath though based on past experience).

I'd also like her to resume treatment but she thinks low doses of antibiotics are sufficient so even if I do convince her, it won't help much.

Any advice as to what to do to get through the next couple of months? I was on antibiotics for 28 days and they did relieve some symptoms.

My main symptom is joint pain which was reduced slightly with the antibiotics and has begun to get worse now without antibiotics- quite painful now (intermittently). Fatigue is creeping in too.

If I cannot get to a LLMD for months, what options are there?

Thanks!

Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
You could try natural stuff, though it won't cure you.

Try Samento for one.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95433 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Usually, we go to any old doctor who will treat for lyme disease while we wait for the doctor we really want to see. I had to do this.

This is called moving up the food chain.

Some lyme support groups can usually tell you the names of docs like this, with wait times of 2 weeks or so.

Also, if your regular doc won't give you any more antibiotics, you can try walk-in clinics. If you tell them you had a tick and a rash and now you are sick, you may be able to get 28 days of meds out of each one you try.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks. I'll try these out!
Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good Job TF. Seeking if you order a test kit from

Igenex, it is hard for them to refuse the draw,

since you are paying for it. The most important

part is getting the results. Many are told by docs

they are neg. when in fact they have bands that

indicate borrelia and they do not know how to

read it. Much less treat it.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
seeking advise,

in case i didn't sent you this, read the bottom about the 7 types of medical STAFF who can sign IGENEX'S LAB REQUEST to order western blot igm and igg or co-infection tests ....

also print off dr. burrascano's lyme guidelines ...

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


lyme disease and CO-INFECTION symptoms lists .... check it out..
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


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


PAGES 17-19 discuss ADULT & KIDS MED TREATMENTS!
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006

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

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

TREEPATROL'S NEWBIE LEARNING LINKS ... over 1000 links of good info and guidelines galore!! MUST SKIM & READ !!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917
************************************************************************


Betty's suggested 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.

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

we thank you for helping us; 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.
----------------------------------------------------

I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.

http://turnthecorner.org/lyme-disease-quick-facts.htm

I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on.
By member Aimee, 7.11.09
------------------------------------------------------

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.
*******************************************

This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

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


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.
========================

VERY important to read - even BEFORE testing:

Dr C's Western Blot explanation is discussed here:

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

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
===========

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.


UNDER OUR SKIN dvd LYME DISEASE documentary,
www.lymediseasefilm.com
go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!

HERXING REACTIONS ... understanding them!
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517


please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.

IGENEX , CALIF. BLOOD TESTINGS ...check current $$!

OCT. 2008 PRICE LIST ... info only!! Showing what tests they do. PRICES HAVE GONE UP ON SOME!

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003


* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!
* Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.

* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes

* The below tests were done for ME; you MAY NOT NEED them all ok! :

* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still.
*
* *******************************************************
* OPTIONAL ONES ARE:

* co-infection panel for YOUR AREA OF COUNTRY;
* PCR WHOLE BLOOD...this is what my LLMD ordered!

It's PREPAY! unless you are on medicare; IGX will file the
paperwork & it's FREE to you.

go to www.igenex.com and read over their info.
Prices go up twice a year: MAY and NOVEMBER!!

*
* have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!

* Also, call 1-800.832.3200 for CURRENT PRICES!
* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!

* You need to DOWNLOAD IGENEX's required form.******************************************************
*
* MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.

Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg 
*
* When you get your results, please post them in MEDICAL;
* Post ONLY the POSITIVE & IND ones ....
not the negative ones!

GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!

OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!

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

IP: Logged | Report this post to a Moderator
AliG
Frequent Contributor (1K+ posts)
Member # 9734

Icon 1 posted      Profile for AliG     Send New Private Message       Edit/Delete Post   Reply With Quote 
If your symptoms returned after the 28 days, perhaps you can convince your Primary Dr to order tests for the co-infections & give you ABX to hold you until your Tick-borne Disease Specialist appointment.

Bring a copy of the ILADS guidelines & state that you'd prefer to be treated according to them since the IDSA guidelines are going through a reassessment due to conflicts of interest, for 12 of the 14 authors, being found by the CT attorney general.

Let the doctor know that you have an appointment scheduled so they know they will be off the hook for further treatment.

If the Primary will only give you 200mg/day of Doxycycline, that's a bacteriostatic dose & should at least help keep it from progressing.
It's better than nothing.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
coltman
LymeNet Contributor
Member # 21272

Icon 1 posted      Profile for coltman     Send New Private Message       Edit/Delete Post   Reply With Quote 
I personally gave up on LLMD , I have one appointment far away which I will use as 2nd opinion.

But if your PCP is good you can do tests, lots of things can be wrong and it will be in your interest to find out if they are and start addressing them while you wait for LLMD apt

p.s. Ohh and btw 3 months is not bad, I know one which has 6 months wait for new patients!

Posts: 856 | From MA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
BC
Member
Member # 20675

Icon 1 posted      Profile for BC     Send New Private Message       Edit/Delete Post   Reply With Quote 
Go back to your PCP and beg for more drugs. Pull out all the stops. My wife and I did a similar thing to tide her over until she got to the LLMD. In the IDSA guidelines is says that a second course of abx is ok if there is persistant joint swelling after the first treatment. So your PCP should be fine giving you more drugs if you still have joint swelling.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
I went to my GP today and it was awful. She is sending me to a rheumatologist and only gave me enough doxy (200 mgs per day) for 14 days.

I guess I can try the walk-in clinic when these run low.

She doesn't think it can be lyme or a co-infection because the tests have been negative.

BTW- my joints are very achy and intermittently very painful, but they are not swelling. Anyone have similar experience?

Maybe it something else, but if it is, my current doctor doesn't have a clue what it could be.

Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
She also tried to give me Cymbalta so clearly she thinks it's depression or fibromyalgia.
Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936

Icon 1 posted      Profile for Abxnomore     Send New Private Message       Edit/Delete Post   Reply With Quote 
Take the above advice and talk you your local support group and TF's advice.

See who every you can until you can get into the LLMD of your choice.

Posts: 5187 | From Lyme Zone | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

You said: "She also tried to give me Cymbalta so clearly she thinks it's depression or fibromyalgia."

Run . . . run . . . run . . . from this doctor. You need a LLMD.

Rarely - very, very rarely, will any rheumatologist understand lyme. They make their money with life-time antidepressant and lyrica prescriptions rather than exploring any possible underlying infections.

While some drugs can help with symptoms, what your doctor mentioned will do nothing to help if this is an infection. Some other drugs used to placate patients are bad for your liver or kidneys and will greatly impede recovery if you have lyme. Even tylenol is very hard on the liver. You need your liver to help you get well. Ibuprofen is hard on the kidneys, so be careful with that, too.


If there is a 3 month wait for your LLMD, there are things you can do in the meantime to help yourself.

In the meantime, read Singleton's book, Buhner's, Zhang's . . . . I lost my links folder but you can cross search the names with "lyme" at Amazon. Or see the Lymebrary link above, etc.

Ask the LLMD to be put on a list if they have a cancellation - ask what books or measures the LLMD may recommend for you while you wait.

Do not settle for inferior doctors.

-

[ 09-15-2009, 01:59 PM: Message edited by: Keebler ]

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

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

I found one links page. Please pardon that there are some repeats to some posts above. My eyes just can sort all that out right now.

Hope this helps. Good luck to you.

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


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" - By Virginia Savely, RN, FNP-C


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.


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


AFTER reading the Savely article above this will make more sense and, sadly, shows the state of treatment:


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

Coinfections should also be evaluated. 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.


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


Dr C's Western Blot explanation:

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


===========

TREATMENT - Articles also appear at this site.

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.


- 2/3 down the page, you can download Guidelines for the management of Lyme disease

and

http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

Dr. Burrascano'sTreatment Guidelines (2008)


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


www.lymediseaseassociation.org

Lyme Disease Association - a wealth of information. Pictures of various rashes - and DVDs of past ILADS seminars - can be found in the menu at the left side of the home page.


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


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/5vnsjg

Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections - by Stephen Harrod Buhner

web site options: www.gaianstudies.org/lyme-updates.htm


http://tinyurl.com/5drx94

Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang

web site: try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro through www.hepapro.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. (It may not be for sale as the film is being shown in theatre around the country now. Perhaps you can borrow one from your local support group.)

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

In addition to the usual coinfections from ticks, there are some other chronic stealth infections that most excellent LLMD know about:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008


I would encourage EVERY person who has received a lyme diagnosis to get the following tests.


- list at link above.


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


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


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


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.


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


www.chlamydieos.cz/studie01en.html


LATENT CHLAMYDIAL INFECTIONS: THE PROBABLE CAUSE OF A WIDE SPECTRUM OF HUMAN DISEASES

Authors: Bazala, Renda from the Czech Republic - Oct. 2007


- Twelve page article at link.


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


Biofilms of Borrelia burgdorferi and Clinical Implications for Chronic Borreliosis - Alan B. MacDonald, MD

May 17, 2008
University of New Haven
Lyme Disease Symposium
New Haven, Conn.

74 pages, pdf:

www.molecularalzheimer.org/files/Biofilm_New_Haven_ppt_Read-Only_.pdf


-=

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks to all of you!! I called several more LLMD today and found one with good recommendations that had a cancellation for later this week.

I am looking forward to discussing my symptoms with someone who is informed and, hopefully, cares.

Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-

Great. The good news is that since your bite/rash were just 2.5 months ago, you have an excellent chance if you get a very good doctor to evaluate and guide you. It will still take some study and great self-care but you have a good chance.


If you have photos of the rash after the tick bite, take the photos with you. There are some great suggestions in this thread:

--------------


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/20605?

Topic: Making the most of your LLMD visit

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
You might want to copy info where doctors state it is very possible that a test conducted within the first 3 weeks of infection will be negative.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Negative tests through Quest or Lapcorp labs is very common. Do not be deterred.

You want to get well!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95433 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
Fabulous that you will see a lyme doc this week!

Also, I just wanted you to know that lyme disease causes fibromyalgia. (Depression can also cause mild fibro.) In fact, my lyme doc taught me this. He had a fibro diagnosis for years and he treated many fibro patients.

Then, he decided to test them all for lyme disease. Guess what? 100% of them had lyme disease. He tested himself, and he had lyme disease too. He treated himself and them and they all got rid of their fibro.

In fibro support groups, they say there are 2 groups of people--those with mild fibro that never gets worse, and those whose fibro becomes worse and worse over time. The first group are depressed and will get rid of their fibro when they are properly medicated for depression.

The second group has lyme disease.

Also, a Boston TV station did a great show on lyme disease a number of months ago. Here is the link to it: http://www.kettmann.com/Lyme

When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
SeekingAdvice
Member
Member # 22337

Icon 1 posted      Profile for SeekingAdvice     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you all for the information and advice! It is a shame that it is so hard to find a doctor that does a good job at treating lyme disease.

I live in an endemic area- you'd think they would all know what they were doing since so many people get it.

I am not surprised about the connection between fibromyalgia and lyme but I wasn't aware of it.

I do know that my doctor hasn't done nearly enough to be jumping to fibromyalgia yet though.

Thanks again! Hopefully the LLMD will work out!

Posts: 14 | From Connecticut | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

Icon 1 posted      Profile for Pinelady     Send New Private Message       Edit/Delete Post   Reply With Quote 
Glad you caught it before it progressed to a diagnosis of MS instead.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.