AliG
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posted
Identical to first.
Bb DNA by Real-Time PCR - negative
Lyme Disease C6 Peptide by ELISA - negative- 0.13
Lyme Disease IgG/IgM by Elisa - negative- 0.59
Lyme Disease WB IgG/IgM: IgM Alt Equiv IgM CDC Neg IgG Alt Neg IgG CDC Neg IgM: 41, IgG: 41.
(MDL had nothing for band 23 IgM, Quest had previously shown 41 IgG, 23 IgM.)
Ped says to keep a symptom log and go from there. She doesn't want to do any ABX at this point because 41 is non-specific. "It could be anything." Yes, but what?! Tick bite, endemic area, Lyme symptoms....? Anyone have any ideas what else it could be 'cause I'm stumped?
Yet another excercise in futility, I guess. It must be all in my head. I really hope that's the case and that I AM just paranoid.
-------------------- 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
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trueblue
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Ali, Has she been tested by Igenex? Is it possible to get a WB from them? It'd give you a better picture if more bands showed, if they were lyme specific.
I was treated on the basis of band 34+ IgG and symptoms.
All that said I hope she hasn't got TBDs and is fine. Do keep an eye out either way.
Good luck and many hugs, trueblue
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AliG
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posted
Thanks True,
Igenex is not possible at this point.
Quasi-LLPeduck sort of trashed Igenex as "over-positive" and Dr.J as "all-treating" to hubby. So if Igenex came back with flying CDColors, DH wouldn't likely buy it. At this point I don't think Dr.J would be an option for him either.
I guess I just have to start keeping a log of her symptoms now. Just what I need, I can't even keep track of my own anymore. This REALLY stinks!! 41 is showing past & present. If not Bb, then WHAT IS IT?!!!!!! It's so tempting to lock myself in my room & never come out again!
Thanks for the much needed hugs!
-------------------- 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
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5dana8
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Hi Ali
MDL has never been good at finding lyme or co-infections in the tissues samples I sent. I just don't understand why your doc doesn't want to test at igenex
Is there no way you could find another LLMD somewhere to get tested at another lab? And or some minor treatment say with some doxy & see if there is any herx?
I know this disease is the most frustrating ever & does push one to the edge.
Hang in there Ali
Hugs & healing Dana
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TerryK
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I'm sorry, I don't know your history. Do you think you may have had lyme while you were pregnant with her? If so, there is a lot that is unknown about congenital transmission. It is proven beyond a doubt that it can be transmitted to a fetus. How that infection will present itself once transmitted is unknown. There have been absolutely no studies to my knowledge that look at how a person might test on WB if they have congenital lyme. It's possible that those who have congenital lyme don't show positive as often. It has been proven that a person can be seronegative and still have lyme.
If you had lyme when you were pregnant and she has symtpoms and no other explanation can be found, then it seems very reasonable to do an abx trial to see if she responds.
There is just so much about this illness that is unknown. If it were me, I'd push as hard as possible to get a trial of abx or some treatment for her now to try to get an idea if her symptoms are possibly lyme. If it's not lyme, she should not have a response to treatment and you can rule that out and move on to find out what else it might be. LLMD's are often very good at helping to determine what else it might be since they typically try to rule out everything else that is lyme like before diagnosing lyme.
I don't know how old she is but as our children get older and take more control over their decisions, it gets harder to insist that they do something. Do it while you can. Terry
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AliG
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Hi Dana,
This PeDuck is of the belief that "everyone tests positive at Igenex". I was thinking that, with the symptoms I see, dd might test positive at MDL since they are known to be better than Quest. Then I wouldn't have to fight the battle of why Igenex is best. (stupid!stupid!stupid! )
The Peduck is close with Dr.G (former Pres of ILADS) and said she isn't using Igenex either. Go figure. Maybe Dr.G is more comfortable with her knowledge of symptoms and better able to make a Dx based on them? Unfortunately, dd's only 7 yrs old. Dr.G only Txs age 8 & up, as seems the case with most LLs in NJ.
It also seems that Peds are not willing to use ABX to aid with Dx. Apparently the fear of giving a child unnecessary ABX should be greater than the fear of having Bb continue unDxd?
I just don't even know how to approach this with hubby. I don't think he'll see her approach as potentially harmful, he doesn't know enough about this. I get too frustrated trying to explain with half a brain.
Thanks for the support. Ali
-------------------- 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
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AliG
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quote:Originally posted by TerryK: I'm sorry, I don't know your history. Do you think you may have had lyme while you were pregnant with her?
Thanks, Terry. I had forgotten about that. It's highly likely, since I was flaring like mad in my third trimester. The ducks just, as usual, couldn't figure out what was wrong with me.
quote:If so, there is a lot that is unknown about congenital transmission. It is proven beyond a doubt that it can be transmitted to a fetus.
Would you happen to have the scientific source of proof, that maybe I could go back to her with? She beat me up on the fear of congenital or breatmilk transmission, so I clung to dd's tick bite.
quote:LLMD's are often very good at helping to determine what else it might be since they typically try to rule out everything else that is lyme like before diagnosing lyme.
Unfortunately, this has been a big part of my dilemma. Hubby vetoed Dr.J and I have been unable to find a true LLMD in NJ who will see a patient under age 8. (dd just turned 7)
quote:I don't know how old she is but as our children get older and take more control over their decisions, it gets harder to insist that they do something. Do it while you can. Terry
It's so tough to do without full spousal comprehension & support. I have to justify everything to him as well as the peducks.
Thanks for the great ideas & the much needed motivation!
Ali
I would truly appreciate if anyone could give me some supporting evidence to back up the congenital or even breastmilk transmission. Maybe if I take a different tact with her I could get further. I don't believe she's beyond reason, I think she may just not have vast experience in this area. It could be worthwhile to present another arguement.
I'm going to see if I can dig anything up myself.
-------------------- 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
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5dana8
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here ya go Ali some links on pregnacy & breast milk
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AliG
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Thanks Dana!
You're a pal!
I got side-tracked somehow reading: The Underdiagnosis of Neuropsychiatric Lyme Disease in Children and Adults. It made me sick.
I noticed that Dr.G was a co-author. Maybe I should tell the ?LLPedduck that this article is one of my primary causes of concern for my dd.
Thanks again for the info. I'll go check it out.
Ali
-------------------- 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
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trueblue
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Oh, Ali, I'm sorry... I forgot all about hubby and Dr J. Sorry, for my Lyme Brain I've asked to behave. So far no luck.
How long until DD turns 8? I'm assuming she doesn't have a little sore throat or earache requiring a little Amoxy does she? Surely, I'm not suggesting using your daughter as a guinea pig but I know my first herxes were on ABX for other things.
I couldn't understand why ABX made me feel like I had the flu, I thought I was allergic to all of them by the time I was diagnosed.
Sorry for getting a little off track. I'll go back to trying to think of something useful.
Hang in there, kiddo!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
My first LLMD's in NJ only did testing through MDL for the Lyme and the coinfections. I can'teven begin to tell you how much this delayed the true diagnosis and treatment for me and my 2 biological kids.
MDL Pcr's showed nothing- only a urine obe for me. The boys only showed band 41. No one wou;ld treat. My one son had tick bites my other one had been inside me while I beleive I had the infection and I breastfed! While they weren't severely ill they did have a lot of medical issues- constant sinus infections, RAD (a type pf asthma), personality changes, sleep issues, etc.
But when my one son started having exact stomach problems like me I said enough. I called Dr. J's office in Connecticut to have the Igenex tests run. Boy I wish I had done that 3 years earlier. Both of them came back CDC positive on the Western Blot and then the Mycoplasma was found in one through MDL and then the Babesia for the other.
MDL found my Lyme in my stomach tissue PCR also and out of 2 Igenex Western Blots - I was CDC positive on one. I cant' stress to you enough that the tests can be hit or miss depending on the cycle you are in and if the bacteria is in the blood stream at the time.
I can't tell you what to do but just from my experience as a mother and having my whole family go through this- the $ is well spent in having your tests done through Igenex. I could have found out I had Babesia three years earlier if those tests were done on me instead of just MDL. Shame on LLMDs who don't use them while the patient has a million clinical symptoms!
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TerryK
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The CDC link is included in one of the previous discussions but I've found a few others since then. I'm including the ones that I have here.
There were some things about this last one that I don't agree with but it does show congenital transmission. Terry
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AliG
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Thanks so much everyone for all the info. I started to try replying and lost my post.
I'm REALLY not feeling well right now and I think I have to go to bed for a while.
I think I'll pray that tomorrow is a better day for my head. It's not cooperating with me right now and I just want to cry. Maybe with a fresh start, I'll do better.
Thanks again for all the links, I really appreciate the support.
Ali
-------------------- 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
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sometimesdilly
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Ali sweetie-pie:
sent you a PM...
dazed dilly
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Truthfinder
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posted
Ali, this is NOT good. I can't decide if you need a new doc or a new hubby.
Did you see what Cave posted on another thread from Igenex? I'll post it below and maybe it is something you need to show your hubby and your doc so they will understand one of the reasons WHY Igenex often picks up Lyme that other labs can't.
Tracy
*********** Excerpts:
In addition, instead of using just one strain of bacteria, two strains (B 31 and 297) are used to make IGeneX Western Blot strips.
This allowed IGeneX to have all the Lyme antigens more or less equally represented.
The IGX Western Blots have been evaluated and have reactivity against various B. burgdorferi strains including: European strains B. afzelli and B gaiinii; the Japanese strain of B. japonica; and the sub-strains of B. burgdorferi from Colorado, Missouri and Texas.
The high amount of antigen to OspA-31kDa and 34kDa gives the IGX Western Blots the ability to detect patients with persistent/recurrent (chronic) symptoms of Lyme Disease.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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AliG
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quote:Originally posted by trueblue: Oh, Ali, I'm sorry... I forgot all about hubby and Dr J. Sorry, for my Lyme Brain I've asked to behave. So far no luck. Not a problem, sweetie. It happens to me ALL the time!
How long until DD turns 8? 11 months 2 1/2 weeks I'm assuming she doesn't have a little sore throat or earache requiring a little Amoxy does she? She's had Amoxy 2x for miscellaneous Txs. Both times she got mysterious "spider bites"(per peduck) on her fingers that greatly resembled the center of her tick bite. Surely, I'm not suggesting using your daughter as a guinea pig but I know my first herxes were on ABX for other things.
I couldn't understand why ABX made me feel like I had the flu, I thought I was allergic to all of them by the time I was diagnosed. I thought it was "normal" to feel worse before better on ABX, I used to joke about it feeling like the "bugs" were just getting mad.
Sorry for getting a little off track. I'll go back to trying to think of something useful.I had forgotten about the "spider bites", so this was incredibly useful.
Hang in there, kiddo!
Thanks True!
-------------------- 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
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AliG
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posted
quote:Originally posted by cave76: ***This PeDuck is of the belief that "everyone tests positive at Igenex****
Maybe all of us here that have received negative or IND test results from IGeneX should send copies of our WB's to this guy.
(In my case, after lots of negs. got a positive spinal tap! Still have negative WBs.)
Stick it to the Man?
Thanks Cave, I needed that!
Brainstorm!!! Gotta go post something ..... Thanks again!!
-------------------- 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
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posted
Hi Ali, I'm sorry you're going through this right now, stuck between doing what you think is best for your daughter and your husband's concerns. Hopefully, you'll be able to convince him to have her tested through Igenex simply as another source of information for the two of you to base your decisions upon. There were some good stories here that should help you make that case.
I wanted to add that if she's had tick exposure, I'm not sure I would switch tacts to the possibility of perinatal transmission. I removed at least 4 ticks from my daughter over 2 years. I also had a bulls-eye rash several years before she was born and breastfed her for a long time. No one -- not my LLMD or even Dr. J -- seemed particularly interested in the possibility of perinatal transmission. Her recent tick bites seemed to be of much more interest to them (and she had sinus infections, RAD, sleep problems as a baby/young child, too). Of course, if you're unsure of tick exposure, that may be a different story.
Just my two cents.
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I really hope that's the case and that I AM just paranoid.![[confused]](graemlins/confused.gif)
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Then I wouldn't have to fight the battle of why Igenex is best. (stupid!stupid!stupid! ![[bonk]](graemlins/bonk.gif)
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