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Concerned with gestational Lyme and Indeterminate Igenex results

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Posted 3/24/2009 4:23 AM (GMT 0)

Hi everyone,

Now that I know more about Lyme disease I believe I have had symptoms for as many as 15-20 years. I believe this because now that I am in to my 9th month of treatment there are pains I have had as long as I can remember that are gone!!! Just one example is that I had knee pain with my periods for as long as I can remember... I thought it was a normal menstrual symptom...

Anyway, prior to the obvious symptoms that eventually let to my diagnosis, I gave birth to and breast feed 3 children. Each of my children have some symptoms that could be related to Lyme disease. My first question is how common is it for untreated Lyme disease to be passed on to children? I have read about mothers contracting Lyme during pregnancy but have not found anything on Mothers that would have had the bacteria prior to conception...

All 3 of my kids (12, 5 and 2) have some symptoms mostly intermittent that could be related to Lyme. My oldest (12 years old) has me most concerned. I have had him tested using Igenex kits 2 times. The first test had a negative IFA, IgG had bands 31 and 39 and 83-93 Indeterminate, Band 41 +++, IGM had 39 indeterminate and 41 ++ This was then considered by my doctor as a negative test, by Igenex indeterminate warranting further testing. My doctor authorized a second Igenex test and the results of this one are IFA Indeterminate, IgM 41+ and IgG 41++. This again is indeterminate and according to Igenex warrants further testing. I asked my doctor to just run the standard office test (Both my husband and I found out we were positive with this test). She refused saying in her opinion the tests were negative. She referred me to an Infectious Disease doctor. I am just wondering what anyone else thinks about these Igenex results? In my mind I'm stuck with the thought that even indeterminate bands were found on the first test and if there weren't there at all why wouldn't they have come back negative? My son has had learning and social issues from a very young age. He was diagnosed a few years back with ADHD and Dysphasia (mixed expressive/receptive language disorder), His difficulties with concentration and comprehension have become increasingly worse in the last year. His biggest physical complaint is his neck which he has had issues with for about 3 years, he has experienced what he calls a pulsing in his fingers which in the last 2 months seems to have subsided, has occasional stabbing pains in chest, has a small gland on his jaw that is always swollen, occasional stabbing type pain in his ear and occasional burining in his feet... I realize all of these things can just happen to people even without Lyme disease. Any suggestions on what I can do to find peace with a negative diagnosis for him or a good doctor near Minnesota that knowing his Dad and I are both positive might be willing to look seriously at his clinical picture and consider a trial dose of antibiotics?

I would sure appreciate any input anyone might have.

Thank You!!!

Posted 3/24/2009 11:55 AM (GMT 0)

Hi momo3, welcome to the board!

I am sorry you have been sick for so long.  Below is a Lyme disease symptom list.  You can have any combination of symptoms. 

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing

Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

It is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols.  No test is completely reliable, and results can vary by lab.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. 

Although the CDC requires several bands to show on the Western Blot, many people who have Lyme do not have this many bands present.  Lyme doctors often look at which bands are positive, some are specific for Lyme.  Band 41 is often the first to show in an infection. Bands 23-25, 31, 34, and 39 are Lyme specific bands.  I believe band 83-93 is also a Lyme specific band.

I am sorry your children also have symptoms.  Lyme disease can be passed through pregnancy and breastfeeding.  If you need a doctor recommendation, you can email me at [email protected]   Infectious disease doctors are not usually the best to see for tick-borne diseases unless they specialize in them.

It is also important to learn as much as possible.  I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton MD. 

Hang in there okay?

Posted 3/24/2009 12:05 PM (GMT 0)
I am beginning to think my 22 year old daughter has Lyme. She won't be able to get to see the llmd until May.

My LLMd did suggest she take cat's claw three times a day for a few days and see if there is any Herx reaction.

This could an inexpensive way to see if your child or any family member has Lyme.

Any opinions or experience about using a reaction to Cat's Claw to help with a Clinical Diagnosis?

saxnar
Posted 3/24/2009 4:34 PM (GMT 0)

Hi saxmar.  I am sorry your daughter may have Lyme.

While the cat's claw may give a reaction, I don't think that a lack of reaction means that Lyme is not present.  As we all know, this disease affects everyone differently.  What works for some people may not work for others.

Does the doctor want her to have testing done before she starts anything?

 

Posted 3/24/2009 8:35 PM (GMT 0)
Thank you for the suggestion of cat's claw.

Are there any other names for this? Is this something I can find in a health store?

 

Posted 3/25/2009 3:33 AM (GMT 0)
momo3,

Your post came up on my google search for congenital lyme today. I'm in Minnesota. My kids (12 and 4) have congenital lyme. I would be happy to share what I know, including info on doctors.

Is there a way to private message me? Or for me, you?

Jeanne

Post Edited (mamallama) : 3/24/2009 9:42:48 PM (GMT-6)

Posted 3/25/2009 5:18 AM (GMT 0)

Jeanne,

I would be so grateful for any help and advice you can give. There must be a way for us to private message on this site. I need to check into that and will get back to you.

Thanks!!!

momo3

Posted 3/25/2009 9:52 AM (GMT 0)
I would also like to hear about congenital lyme. I asked my dr. about this as I was nursing my last child and was told it was very unlikely but I have several children that have some symptoms. Is the Igenex self test something you can order yourself or do you need a prescription for that? Thanks!
Posted 3/25/2009 2:28 PM (GMT 0)

The Igenex lab is a Lyme specialty lab in California. You do need a  doctors order to get the test. You can call them and order the kit yourself to bring to your doctor if they are not familiar. The advantage of this test is it is more specific than a standard doctors kit test. It lists the bands seperately as well as the intensity of the bands. Myself and my husband did get our positive results with the standard doctor kit. Not CDC positive but specific bands that warranted treatment. My son as I stated has had 2 indeterminate Igenex tests. I personally wish I would have started with him on the standard doctor kit and then followed up with the Igenex because now my Lyme illiterate family doctor is refusing to do another test because in her opinion the indeterminate tests are considered negative... I know that this is just not the case so now I have to wait to get him in to see a LLMD that will either order another test or treat based on symptoms...

I guess I am still wondering the same as you as to how common congenital lyme is. When you read about it you mostly find that these babies are very sick... Mine are not but they all have symptoms, mostly intermittent, and other than my oldests concentration, comprehension, learning issues and neck pain can be written off as normal... What concerns me is my sypmtoms were not necessarily typical... Not my husbands either and I would prefer to find out if they have this while they are still young and treatment is much more successful...

I'm guessing to get to the bottom of this I will have to see a true LLMD. I have been seeing a recommended Infectious disease specialist but he is still the type that will not even see a patient without a positive test result and so far his advice to my family doctor has been detrimental to my search for answers.

Good luck to you, feel free to contact me anytime :)

Posted 3/25/2009 2:30 PM (GMT 0)
Jeanne, Please double click on momo3 and feel free to contact me with the listed e-mail address. Thanks!

Posted 3/25/2009 6:28 PM (GMT 0)
I think MANY congenital kids don't make it through the gestation period. I think kids have to be pretty darn strong to survive lyme and co-infections crossing the placenta. When they do, they are often diagnosed with autism and other issues that mask the real problem -- a bacteria gone wild in their little bodies.

We have a group at lymefriends.com for congenital lyme conversations. There are MANY of us who passed lyme to our kids without knowing it.

Jeanne
Posted 3/25/2009 6:34 PM (GMT 0)
Oh! And 41 is the tail of the spirochete and from what I have heard it is highly suggestive of lyme on the move in the body. It is the ONLY band I have positive, and according to my LLMD, it warranted treatment.
Posted 3/25/2009 6:39 PM (GMT 0)
I am also interested in hearing / learning about congenital lyme.

And I have a question but was not able to find out the answer / understand it till now: if a mother has / had Lyme is there a possibility that she gives only her anitbodies to her child and the child tests positive for that reason without being infected?? If so, how long does such an antibody presence last ??
Would such a (IGg ??) titer decrease (much?) faster than a titer acquired by infection ??

I try to understand the range of transmission and their modalities.
Posted 3/25/2009 9:22 PM (GMT 0)
Thank you for the information. I will check out the web-site. Also interesting to know what you were told about band 41... I did some research last night and came to the conclusion that although what I have been told is 41 is not specific, there are only 3 possiblilties other than Lyme that would cause this band... My son definately does not have syphillis or Treponema (it is only found and central and south america) there is a possiblity of Leptospira but this is very rare and likely he would have gotten very sick from this which has never happened... Considering that we live in an endemic area, I can't see he would have this band from anything other than Lyme... I am so annoyed that the general medical community cannot see this and frankly won't even hear it!!!  Thank you so much. Now that i am feeling so much better I feel capable of focusing on my kids and making sure they are as healthy as they can be!!!

Posted 4/1/2009 3:32 AM (GMT 0)
momo3,

Hi there. I recently ordered some cat's claw (samento) from nutramedix online.

https://www.nutramedix.com/store/comersus_viewItem.asp?idProduct=17

I have been taking it for 3 days to help treat my chronic lyme infection. I have had lyme diases (misdiagnosed as chronic fatuge /EBV) for about 2 1/2 years now. Since taking the Samento/Cat's claw I have noticed more energy and my joint pain slowed down severly. However, now I am having trouble falling asleep. I feel kinda jittery now. I may need to cut back my dosage.

I purchased the liquid form. It was expensive. But when you suffer .. 47.95 is not bad if it helped. So far, I feel better. I do not think it is a cure.. but it helps.

I have also purchased MMS - Miracle Mineral Supplement and plan to stop taking the Cat's Claw (Samento) while treating with the MMS.

I'll you know how it goes.
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