Following a rather exciting and invigorating morning, being on the talk show and all,
I received my Mother's Igenex test results.
She has been on many walks out here in the country over the years, in the woods and
Also lived with us outside for 3 weeks post Katrina.
Here are her Igenex results:
IgM
30++ 31 IND 39 IND 41 +
IgG 23-25 IND 41+++ 58++
I have been worried about her and her health for quite some time.
Complaints of severe joint pain, numerous infections, fever of unknown source,
Vertigo, fatigue--she always falls asleep when she comes to visit me.
She always has these weird rashes too.
Here is my problem with my Mom.
"I don't have Lyme" she says.
I told her that her test, while not CDC positive,
Did show bands consistent with Lyme Disease.
Plus she has all of these symptoms.
I told her that I would like for her to see our LLMD.
No.
She wants her GP to treat her.
Her first reaction was that she would not pursue any treatment....
It kind of made me mad....and sad.
This is one stubborn lady.
She does have a lot on her plate. She has been layed off her job with two years
Until retirement. The stress from that has contributed to many strange "flu-like"
Illnesses within the last 3-4 weeks.
Any advice? Suggestions?
Here I go again.
With two small children, who recently tested positive for Lyme,
A husband, who also has Lyme and myself struggling with Lyme and co-infections,
I am not sure I am up for this battle.
I won't let my mom go without treatment...but, she needs the right treatment.
She says she doesn't want to be on as many meds as me....or go through what I go through, etc.
She also said she doesn't have time for this as she is looking for a new job.
She will be on Cobra insurance starting next week.
Thanks so much for any advice/suggestions that you may have for me.
Hugs,
Geneal
Posted by sixgoofykids (Member # 11141) on :
Geneal, unfortunately we cannot make our parents do what we want.
It looks like a positive test to me. You might point out that as time goes on she will get worse, not better. That you don't like being on all these drugs and didn't choose it.
That you don't like feeling as you do and didn't choose that either. Mention that as she gets worse, it will be harder to treat as it will be even more established and she may even get too sick to work.
That's about all you can do. Focus your energy on your own health and getting your kids better. I know you care about your mom and you worry, but there's really not much you can do other than talking to her about it.
You might also mention that she will be working with the LLMD on her own protocol. The same protocol is not used for everyone, and if she wants fewer meds, then you're sure the LLMD will work with her on that.
I think constantly nagging will only make her more stubborn about not getting treatment.
Posted by ByronSBell 2007 (Member # 11496) on :
Her Igenex test looks strongly positive no question about it. Tell your mom she will do alot better with a new job if she rids herself of the lyme disease. She will deteriorate with no treatment... But you cant force an adult to do something Posted by Vermont_Lymie (Member # 9780) on :
Yes, I think it makes sense to mention to your mom that seeing an llmd will be important for her new job and doing that well. It seems that she is most focused on her work.
You might want to mention that treatment will help her regain her energy, make her feel less fatigued.
And let her know that all you want for your birthday and christmas is her seeing an llmd.
Good luck with this!
Posted by Geneal (Member # 10375) on :
Dear Vermont,
That was a good idea....The only thing I want from you Mom is....see an LLMD.
I have to admit, when I told her the test results her refusal for treatment did me in.
I did tell her that I didn't pay for the test, go through the trouble of having her tested, for her to refuse to believe the test results.
When asking her the questions sent with the Igenex test, like have you ever had a rash, joint pain, fatigue....
Her response was no, no, and no.
I told my Mom that I knew these responses to be false (as we've talked about symptoms before).
I told her it was just a questionaire. Why not be honest.
It won't make your test any more positive or any more negative to be truthful.
I should have seen the writing on the wall back then.
I did tell her that she will get worse if she does not get treatment from a Lyme literate MD.
Thanks so much for the suggestions and support.
Things that make you go AAAARRRRRRGGGGHHHHHHH!!!
Hugs,
Geneal
Posted by lr26 (Member # 7437) on :
Hi Geneal,
I, like alot of others searched for a dr to treat me for 7 years and when I finialy found a LLMD here. I just broght the subject to my mom. I told her just maybe lyme is causing your parkensons and it dosen't won't hurt to check it out.
She said ok and I brought her to my first appt. with LLMD. And he told her maybe you don't have lyme and maybe you do, and asked her to try doxy for a month and see. If you don't have lyme the doxy won't hurt you and if it helps well maybe.
To make a long story short. Mom and I have been seeing our doc every other mo.for 2 1/2 yrs. Within a month of doxy her hand writing got normal, she could get a spoon to her mouth to eat.
She has had alot of set backs in the last year, car acc. & broken hip. I don't think she really beleives she has lyme; but she really likes doc and she does improve with treatment for lyme.
Doc has to go slow with her treatment cause she is 70. But Doc is the only Dr. she trusts. He even set her up with a nuroligist(sp) that works with him.
I don't don't know what mom & I would do with out my LLMD.
Lori
Posted by Michelle M (Member # 7200) on :
Remind her that a shocking percentage of autopsies of people who died of "Alzheimers" contained b. burgdorferi in their brains.
Tell your mother that untreated lyme can go into the brain and has a strong correlation with Alzheimers. As much as you're a loving daughter and want to take care of your mother, you don't want her to wind up with Alzheimers.
That is even worse than the physical aspects of untreated lyme disease. And would certainly cut short her working career!
Good luck, you certainly are a wonderful daughter. But we knew that!
Michelle
Posted by Lisianthus (Member # 6631) on :
wow....
Is your mother my dad?
They sure sound exactly the same!
My dad had a IND WB, and alot of specific bands. (I had him test with my doctor to get it through IGeneX)
He then took his test results to his idiot ID DUCK, and the duck convinced him that he did not have a ELISA test and the WB wasn't positive so he doesn't have lyme!
He tells me (If I ever bring it up) that I don't have a medical degree, I'm not a doctor so quit acting like one.
It is frustrating because he just keeps getting worse, while the other 10 people in our family are getting better.
The only thiing that we all do is when he complains about his symptoms we all say things like "Well, I used to have that symptom, but its gone now since I treated for lyme" Or "That has gotten better with abx treatment"
The only thing that I would suggest is to print out Dr. B's guidelines and have her read some of it or read it to her. Also let her know how better your getting on abx.
Good luck, and my heart goes out to you (I do know EXACTLY how you feel)
BTW -- My dad and I do not discuss health issues anymore, because when he does complain he knows what hes going to hear from me. Its mainly up to my mom.
Take Care, Lisi
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Michelle M: Remind her that a shocking percentage of autopsies of people who died of "Alzheimers" contained b. burgdorferi in their brains.
Tell your mother that untreated lyme can go into the brain and has a strong correlation with Alzheimers.
And in the same breath, ask how she feels about ending up in a nursing home??
Posted by Jellybelly (Member # 7142) on :
Hi Geneal
Getting family members to pay attention is often VERY difficult. Especially when they are older and happen to be a parent.
Sometimes they have to reach the point that they will do just about anything, possibly even eat dirt, if it makes them feel better. Your mom may not be there yet.
As people get older too, they get set in their ways. My mom was VERY comfortable with her doc and trusted him. He did the Igenex test for her, but when it came back negative.....well you know, end of story for him.
She has a diagnosis of MS and I really believed that Lyme was at the core since she remembered a bull's eye rash so very long ago.
She came to visit me, and I convinced her to go see my LLMD, but I had to pay for it. He felt of course with her history, Lyme was at the root of her MS symptoms and started her on abx. Her first test was so negative there were no maybes even. BUT, after about 2 months of abx, LLMD retested her. This time she came back CDC positive!!!
She now believes she has Lyme and tells evryone. The doc she loved so much barely acknowledged the Lyme result, but he does still see her for other stuff.
In regards to the Lyme, she has phone consults with our LLMD as needed. She is not treating the infection right now, and that is her choice. At her age, the herxing is just to difficult to endure. She is back on the Avonex that is used for MS and she feels much better, although all it is doing is shutting down her immune system.
I've done what I can do, I've given her the tools to work with, the rest is up to her. I do understand that at her age and with the ravages that this illness has inflicted on her body, herxing is just more then she can bare. It is sad but true. She is 68, so she could herx for 3 years straight and then die from something else. She might as well be comfortable and try to enjoy the rest of her life with the Avonex.
It makes me sad too.
Posted by Geneal (Member # 10375) on :
Thank you all....
I know my Mom and I have had that dreaded "nursing home" talk.
I told her that as long as she knows who she is and who I am, I would never put her there.
I have two young children who need me to support them for a long time.
My Mom already knows that I will do my best to take care of her....but I need her to also want
To take care of herself.
It does have me rather depressed...or maybe it's just the rifampin today.
I called her and asked if she could get to my house early enough for our next LLMD appt.
No, that's way too early. Maybe the next month.
You better believe it Mom....
Gonna get her to her GP...get started on something....
not doxy as she does major gardening all summer long.
Will make her an appt. with our LLMD for July with the rest of us.
Thanks again.
Hugs,
Geneal
Posted by kam (Member # 3410) on :
Geneal,
That is moving forward if she will at least meet with your LLMD. This is good.
Posted by Tincup (Member # 5829) on :
Bless your heart. This sure ain't easy.
From what I see... and I've seen this many times in the past.
Bottom line...
She is scared.
She sees what you feel like and what you go through (especially as your mother).. and "DENIAL" has crept in to protect her from the same fate.
She also thinks she isn't "as bad" as you... or has different symptoms than you do... so it can't be Lyme.
DENIAL.
Unfortunately, I don't know how to combat the fear or denial. I would have given my own life to try to save others from this situation and what became of them because of it.
Anyone know how to get past the fear and denial?
More than anything.. I wish I knew.
Good luck dear daughter. Really.
Posted by Marnie (Member # 773) on :
She might be right.
This might be parvovirus (5th disease) which can follow lyme (neighbor of mine).
If lyme...share the cost and use of a far infrared sauna.
Posted by lymeladyinNY (Member # 10235) on :
Yes, Tincup - denial and fear.
My brother is 62 and has been a veterinarian for many years. Last year he had Bell's palsy and became psychotic and had to be hospitalized in a mental institution.
He is stable on anti-psychotic drugs now and I brought up the possibility of Lyme with him as he works with animals all the time.
You should have seen the look on his face. He has seen how I've suffered. One time I happened to see him when I was waiting in my car for our dad at the grocery store and he came up to the car window to speak to me. He burst into tears and told me babesiosis was going to kill me.
This was when I was first diagnosed - so not pleasant to hear. But I remembered that he did say that, and know he is terribly afraid of Lyme disease.
I feel really bad for him. The last time I saw him he seemed depressed and not himself. I don't dare bring up Lyme to him anymore because of his fragile mental health.
It's hard enough when it's yourself suffering, and so much harder when your loved ones are, too!
Posted by sixgoofykids (Member # 11141) on :
Marnie, your first article mentioned that some bands are specific to Lyme, and Geneal's mom has some of those bands mentioned in the article.
Posted by bettyg (Member # 6147) on :
geneal, my hurt goes out to you; your plate runneth over!
lots of good comments above.
since she gets cobra starting next week; it's a shame she won't use this SHORT time of additional health insurance coverage to her advantage.
also, tell her; friends have supplied you with good SSDI, social security disability insurance benefits since your mom no longer has a job.
which would you prefer to go thru:
SSDI process of hell, or to be treated for the lyme disease that showed up on your special lyme lab testngs? good luck either way. Posted by Marnie (Member # 773) on :
Fairly recent research from a country other than our own:
Potentially misleading Western blot results in Lyme disease diagnosis
British Journal of Biomedical Science, 2006 by Mavin, S, Evans, R, Appleyard, K, Joss, A W L, Ho-Yen, D O
The laboratory diagnosis of Lyme disease is complex1 and serology remains the technique of choice.
Recommended practice is a two-step process involving a sensitive screening enzyme immunoassay (EIA) followed by a more specific confirmatory Western blot for all EIA-positive and equivocal samples and for EIA-negative samples with a high clinical suspicion of Lyme disease (e.g., tick bite and erythema migrans).1,2
However, Western blot results require careful interpretation.
The National Lyme Disease Testing Service Laboratory, Raigmore Hospital, Inverness, tests over 3000 samples annually from across Scotland, many of which are from complex clinical cases.
It was noted recently that serum from a patient with confirmed parvovirus B19 infection crossreacted with the in-house Borrelia burgdorferi IgG Western blot.
This could lead to the wrong interpretation of Western blot results. This study aims to discover if other viral infections produce similar results with the B. burgdorferi IgG Western blot.
The study group consisted of six patients found to contain IgM antibodies to parvovirus B19 infection (parvovirus B19 IgM EIA, Biotrin International), six with cytomegalovirus (CMV) IgM (CMV IgM EIA, Microgen Bioproducts) and six with Epstein-Barr virus (EBV) IgM (EBV VCA IgM EIA, Diasorin). All patients had good clinical evidence of viral infection (Table 1)."
Posted by Tincup (Member # 5829) on :
QUOTE-
"The study group consisted of six patients found to contain IgM antibodies to parvovirus B19 infection (parvovirus B19 IgM EIA, Biotrin International)...
six with cytomegalovirus (CMV) IgM (CMV IgM EIA, Microgen Bioproducts) and ..
six with Epstein-Barr virus (EBV) IgM (EBV VCA IgM EIA, Diasorin).
All patients had good clinical evidence of viral infection (Table 1)."
```````````````````````````````````````````````
OK... perhaps folks don't think in the same mode as I do..
But for years I have said it MIGHT be possible... especially since no one knows where "stuff" comes from in many cases... that we are getting some of these viral, parasitic, and bacterial infections from ticks or other "bugs".
I test HIGHLY positive for Epstein Barr... have for YEARS.. as have MANY of us with Lyme.
I also test highly positive for Parvo B-19... as do others with Lyme.
NOT all of us do.. but a good enough number do.
I also found studies that detected very high readings of Epstein Barr in many patients who had been given the MS diagnosis.
Sooooooooooooooo... since I know from my research that mice, for example, can carry at least 99 different diseases... and the ticks feed on mice... blah blah blah...
It could be that we are contracting various infections from the ticks that were once thought to be from a mystery source.
Think about this. Kids are usually the ones diagnosed with Parvo B-19. NOT always.. but much of the time.
Kids also are the ones diagnosed with the "kissing disease"... mono or Epstein barr.
Kids also are the most vunerable to ticks.
I cringed when I read a study by... uh... what's his name.... ah... Maryland doc up near Baltimore.. can't remember the name... anyhow..
In the study of Parvo B-19 patients... some got better.. and some got worse.
The ones who got worse had what we know to be "chronic" Lyme symptoms. Of course if any ELISA's for Lyme were done back then.. they probably would have been negative.
Anyhow.. it still bothers me today to think of those folks who probably had Lyme and maybe other co-infections and who still suffer from what they were told is just "Parvo".
The reason I wonder about this is because I have been bitten by multiple ticks... in the same area where these patients in the study came from.
I've also lived with different people who had "TB", Mono, Maleria, etc (military).. LONG before I got sick and in another geographical area totally. Meaning... I didn't "catch" that stuff and obviously was exposed to the humans who had it .. but I had tick bites.
Soooooooooooooooooooooooo...
Rather than say the Parvo may cause a Lyme Western Blot to be false-positive...
Maybe these folks HAVE both Parvo and Lyme??? Like ME!
And LOOK at that study. They found... out of 3,000 Parvo patients... only ONE who had a Lyme WB that was positive. To say a Westen Blot could be contamined by Parvo is rather a HUGE leap.. especially since the Lyme Western Blots are so inaccuate anyhow for false negatives.
Anyhow... just my thoughts... for what it is worth.
Posted by Tincup (Member # 5829) on :
Oh.. Marnie....
I meant to say thanks for posting that study. I hadn't seen it. It obviously has me thinking!
Posted by Geneal (Member # 10375) on :
Thanks Marnie for posting that thought intriguing information.
I did tell my Mom that it wasn't a for sure thing.
The reason I want to get her to my LLMD is because I trust him to run the other tests,
And be able to interpret via results, Igenex results and symptoms what her problem may be.
Thanks so much.
I'm still working on her brain.. She is coming over to see me tomorrow.
I am going to go over a comprehensive Lyme disease symptom list and give her my book on Lyme.
No more.....no less. I know she already feels overwhelmed.
With the book, she can read it when she wants to.
Thanks again,
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
Good plan, Geneal. Just back off a bit and give her time to think.
Tincup...I agree with you about the parvo. I know someone who had it and she also had Lyme. I think the Lyme so destroys our immune systems that it leaves us susceptible to viruses.
Posted by Al (Member # 9420) on :
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