Topic: retesting- with Igenex? or other tests? when? does it mean anything?
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so my llmd says I am cleared of lyme and bart, babs and parasites. I am going in to test for mold Thursday.
I seem to have neuro symptoms coming back and new ones too.
now what?
I really can't afford Igenex or any other test besides what my local MDs would give- which are Eliza and / or Western Blot. so.....
my dr is alternative dr and I am not sure I trust him 100% as I trust no drs really.
llmd thinks I should be feeling better than I am so he is concerned and that's why I am going in later this week.
Are we supposed to retest?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
One option is to get a 75% discount for IGeneX testing through www.lymetap.com, for low-income folks.
Personally, I don't see the point to testing if you already know you've tested positive for various illnesses. I'd be more focused on treating any symptoms. Best to work with a Lyme doctor who knows what they're doing.
Posts: 13116 | From San Francisco | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Saying you are cleared of all those things doesnt sound like something a real llmd would say
Think of the science...it doesnt make sense
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Burrascano says to treat until the patient is symptom free, then treat 2 more months.
That's what my lyme doctor did. He never retested me. You just go by symptoms.
You need more treatment since you are having symptoms recurr.
If symptoms recur and you get new ones, your treatment has been inadequate. Burrascano made that statement in response to a question I submitted about my own situation during a question and answer session at a lyme conference years ago.
So, either the dosages have been inadequate, the medication combos have been inadequate, or the length of treatment has been inadequate.
Why not compare your treatment to the Burrascano Guidelines and see if it measures up.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I can't afford a Burrascano Dr type.
I am not low income because my husband makes more than what their threshold is (but he doesn't make a ton, believe me). I have not worked since Decemeber and med bills plus having 3 kids has drained us fiancially
our house is falling apart and we are 13,000$$ past due on our mortgage. can't sell (it gets even more complicated!)
so we are stuck here in limbo!
and I have no money and I am allergic to some meds plus abx made me so sick. so it was go to this alternative dr for more managable bills or curl up and die.
on the other hand.....
I am not sure , now after almost a year of reading and such about lyme & co, that it is all black and white.
I agree treatments can last years, but I also believe that everyone responds differently.
I also think that because of the different ways we all respond, no one can say that such and such will work for them. Many people have gone to this particular dr of mine and been symptom free after his treatments- yes, and some people from here on lymenet.
that is pretty good to me, I think. people go to him after years of abx that are desperate and frustrated. and they get actual relief.
I am not knocking abx, of course! I wish I was wealthy. I would be so much better off. I could get massages and saunas and IV ABX and good food, and all that fun stuff.
but, this is what I have.
what I don't understand is why would it be impossible to be treated and experience die off. Couldn't it be possible for die off to last a certain amount of time? do all the buggers just choke all at once and flush out?
I am no scientist, but I know a little about science, and something tells me that this would be almost impossible.
my gut tells me that maybe it's die off combined with repair and healing. My head says it could be a lousy way of life I have and the damage is done and so I will never get "better"
or it says that I got infected again and these are new symptoms.
I am wondering though, if retesting comes back + could it jsut be antibodies left? or if it is neg. and I still have symptoms, then what?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Lisa-i am sorry you are in this situation It is very complicated and that is why almost all of us get involved with a good doc that understands lyme. It is very hard to figure this out yourself
The first year i went to one of the best docs for lyme-20 yrs ago he did a good job with my daughter but really messed up drugs and dosages etc with me. I lost a lot of money that year and time. Thats when i talked to sandy b and she helped me figure out the rught llmd for me
Im not sure where you live. I know of a doc in nj who is good and very reasonable. I dont see any reason for you to waste money on testing. Testing never tells you you are better
I forget-are your husband and kids sick too?
Im not sure what to say...i got things under control with buhner but wouldnt say i was cured
I hope someone comes along with good suggestions
There is some financial help available
It is terrible how our medical system is handling this disease. It should not be so hard to get tx
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Lisa-I would avoid retesting and just go by the relief of symptoms instead.
Gosh knows, the tests aren't that great anyways.
If the mold test is through Real Time, it comes in just under 800...yikes. But a very good test. Just wanted to give you the heads up for the pocketbook.
Alos, I can't afford much for massages either, but found a massage school near me that does an hour massage for 40.
Do you have any schools near you? It might be an affordable option.
Agree with all of the above. if symptoms are still there-you are probably still sick with whatever the offending bacteria/virus is.
Once lyme gets into our glials-it pretty much is there to stay unfortunately. At least from the studies I've read, and the autopsies done.
I just hope one day my immune system can keep things status quo.
Hugs to you, from your broke sister in Canada. haha. We can cut coupons together.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I hear you girl.. same boat. I was retested and all came back negative but my symptoms are still with me. But after they all came back negative I thougnt I don't have lyme and its something else well all other test negative except coritsol, ANA and my adrenals are shot. Did the doc do anything of course not .. Told me to meditate and do something good for myself.. This was not a LLMD.. I can't afford on and the test were not with Igenex .. I did have the Igenex in 2011. For now I am just trying to live with all this misery and that is not living.. I have no answer for you but can relate..
Posts: 1058 | From VA | Registered: Oct 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Greta, great idea about massage school!
My daughter gave me gift card for massage last year for my birthday! I guess it's time to dig it out now that I remember! I hope it didn't expire.
I did just have my adrenals checkd again. I thought they were better, but test says no. working at 55%
that would explain the increase again in anxiety and startling. and panic . These sx were gone for a few months and It felt so good- no needless worrying!
now I could tell they are back, but sad to hear about how they are not better. lldr gave me adrenal suppliment.
I don't think I amgoing to do another big $$ lyme test. I hear what you are all saying, could be + or -. no need to waste money, right?
thanks everyone for helping me!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I think retesting can be a disaster if insurance is involved and you get a negative test after having a positive one.
Also, if your immune system is so messed up that it can't even make antibodies, the tests are useless (unless you do one of the non-antibody tests).
Retesting can be good if you had a negative test and then do an antibiotic challenge because there's a chance that the test will turn positive.
I think part of retesting is to see the effects of how your treatment plan is going.
I have 13 co-infections that my doc and I have been chasing around for months.
Last year, I tested before and after a month of doxycycline and it was interesting to compare what my antibodies were doing.
I'm going to be retesting again to see how active the Lyme is and to evaluate if a PICC line is the way to go at this point.
I've been having a dramatic reaction to babesia meds this month which is a big game changer.
Posts: 2839 | From California | Registered: Jul 2012
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