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  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Seeking a Doctor » Looking for Lyme Literate Doctor in Pittsburgh for Igenex testing

 - UBBFriend: Email this page to someone!    
Author Topic: Looking for Lyme Literate Doctor in Pittsburgh for Igenex testing
maek
Junior Member
Member # 50469

Icon 1 posted      Profile for maek     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello,
My son has had unexplained inflammation of his left lateral rectus muscle. He had an eye muscle biopsy in February and all test were benign. Interestingly, when this all began he started a course of Doxy for acne, and his eye began to improve almost immediately. I know that because he visibly had more control over movement of his left eye. After several months mobility then stabilized after initial improvement. The Doctor's paid no attention and in the meantime he was tested for Lyme. Negative but reactive for bands 41 (IGG), 45 (IGG), and 23 (IGM). I am seeking a Doctor familiar with Igenex testing because the Doxy was initially effective and I believe Lyme and other infections can manifest in the eye. He was treated twice with very high dose steroids which were useless and almost made it worse. So sorry for the long message but want to provide a condensed version in the event someone might have an answer. Thank you!

--------------------
maek

Posts: 1 | From Pittsburgh | Registered: May 2017  |  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 
How old is your son? We need to know age because many lyme doctors have age limits, and very, very few take young children.

If you suspect lyme, do NOT let any doctor give your son any steroids or immune suspressant medications unless it is a life or death issue. Steroids, etc. can make a case of lyme nearly uncurable and what could have been treated with oral medication can turn into a need for IV medication for months and months.

Read about this in the Burrascano Guidelines:

http://www.lymenet.org/BurrGuide200810.pdf

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. (p. 4)

"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." (p. 12)

If you want to get an Igenex test for lyme, you can call Igenex and ask which doctors in the Pittsburgh are requesting such tests for their patients. Then, go to one of those doctors.

However, if you son has many symptoms of lyme, you may as well get started with the process of getting him with the very best lyme doctor you can possibly afford.

Look at the symptom list on pages 9-10 of the Burrascano Guidelines. Make a list of every symptom he has. The more symptoms, the more likely he has lyme.

Lyme specialists mainly rely on symptoms to make the lyme diagnosis since the lyme tests are not very good. Even with Igenex, a person with lyme can get a negative test result. Read page 7 of Burrascano where he talks about the tests.

"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (p. 7)

I will send you info on lyme doctors, however, without the age of the patient, many of them may be irrelevant to your case.

Welcome to LymeNet! We will help you here all we can.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
Member # 9256

Icon 1 posted      Profile for hopingandpraying     Send New Private Message       Edit/Delete Post   Reply With Quote 
Welcome to Lymenet!

PM sent with some names of LLMDs in OH & PA who see both children & adults. Also sent you a couple of names of Lyme-literate Ophthalmologists in PA.

Yes, the bacteria which cause Lyme disease, Borrelia burgdorferi, like connective tissue so they can affect the eyes.

Band 23 is Lyme-specific. Here is Dr. C's Western Blot explanation (he is one of the top LLMDs):

"In my clinical experience, if a patient has symptoms suspicious for Borreliosis, and has one or more of the following bands, there is a very high probability the patient has Borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."

Western Blot Explanation link:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

You didn't mention how old your son was. We need to know in order to send doctors' information to send you, because some Lyme doctors only treat adults, others just children while still others see both.

Your son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Steroids are contraindicated for Lyme (see Dr. B's Guidelines), because they suppress the immune system allowing the Lyme bacteria to become entrenched deeper in the body thereby making the patient even sicker.

Unfortunately, LLMDs are far and few between. Your son needs to go where they are. At least half of all Lyme patients travel out-of-state for proper care.

Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/PennsylvaniaLyme/info

Maybe they can help. They would know better about PA.

Some more resources for you (including Support Groups info):
www.lymepa.org

http://whatislyme.com/websites-and-support-groups-by-state/

http://www.lymenet.org/SupportGroups/UnitedStates/Pennsylvania/

Here are some links about Lyme and children with very good information:

http://www.childrenslymenetwork.org/

https://sites.google.com/site/drjoneskids/symptoms-literature

https://sites.google.com/site/drjoneskids/home

Links about teenagers and Lyme Disease:
https://www.lymedisease.org/45/

http://www.livingwithlymedisease.org/teenagers-with-lyme-disease.html

http://www.lymefight.info/lyme-disease-general-information/children-teens-and-lyme-disease/

Here is a link for a book titled, "When Your Child Has Lyme Disease: A Parent's Survival Guide" which also might be helpful:

http://www.lymeliteratepress.com/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8888 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 1 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Hey there in Pittsburg,

Sorry to hear about your son. Eye problems with Lyme are fairly common. Glad he saw some improvement on Doxycycline. That's a good start.

Might want to consider the possibility of Bartonella, which will also cause many eye problems. Info on Bartonella is here.

https://sites.google.com/site/marylandlyme/tick-borne-diseases/bartonella

If you go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".

Click there to find the names and contact information for health care professionals treating Lyme & TBD's in your state (or any state).

There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.

There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.

Hope your son is back to normal real soon. Good luck!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  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.