-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Lyme is a clinical diagnosis. PCR frequently false negative. Late stage chronic cases often are no longer making antibodies, which is what a WB looks for.
But you know all this. Think the only way to find out is an abx trial, see if they herx, see if there is any change in condition. Of course, it might take a while to see a change. If it were me, I would want to pursue this futher.
Posts: 8430 | From Not available | Registered: Oct 2000
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Here's one portion of it: "Many would say the " +/-" equivocal bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases."
equivocal is now called indeterminate
That said....I would call all IND's positive.
23-25: Outer surface protein C (osp C).
30: Possibly a variant of outer surface protein A.
31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
58: Heat shock protein.
------------------------ I agree with lou; this needs to be further investigated. As Dr C states, a negative test will often convert to a positive with a round of abx, then off the abx for a few weeks...then test again.
Lyme is a clinical diagnosis.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Thanks Lou..... yes you're right ........ I know all that. However, he is a very difficut case. He lives in a rehab center and is not really mentally clear. He cannot make these decisions on his own or even understand the implications.
The care at the facility is not great and my 77 year old mom tries to help as much as she can. She spends a good part of many days there trying to help out. Getting ABX Rx'd will be next to impossible uness he goes to an LLMD.
That means trasporting him an hour in a van each way. Not an easy thing to set up or afford. If this looks really like something promising that might help then I might be able to convince my mom this needs to be done. I live 1000 miles away from where they are.
So I am asking for opinions to see if folks think this is Lyme here or is Lyme just a long shot. He has received MS treatments for many years and he is not doing well.
Thanks, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Boy, what a situation. Under the best of circumstances, treating a late stage lyme case is difficult, but without the patient being up for the struggle and support system kinda frail.....don't know. Tough to figure it out. You have my sympathy.
Posts: 8430 | From Not available | Registered: Oct 2000
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Robi,
I just looked, my first WB (it was from before Igenex) but this was the result...
IgG 34 +
IgM nothing
I wasn't producing antibodies, I was too sick to make them.
After being treated for a while I got an equivocal test and further down the line a positive WB.
My first positive test was a urine antigen when they were brandy new.
I have never tested positive on a PCR.
I responded well to treatment. I wasn't 100% but was easily 85-90% (before the car accident).
No real help there just wanted to show how negative my tests were. I am a perfect example of what tutu and lou said.
(My initial diagnosis was demyelinating disease.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Robi:
What a terribly sad and tragic situation.
It's my personal opinion he has Lyme...( those results indicate Lyme to me.)
But being mis dx'd and mis medicated (MS drugs) - and his treatment being out of you hands- no matter how much you'd like to help him, in this situation you just may not be able to. And an LLMD may not take the case due to his mental status.
Plus- on this borad we've seen people (Ms dx- MS drugs) get worse on abx, and in your bro's case - he can't stand up for himself to say continue or not.. it would have to be a guardian doing that- (or your Mom) and alot of people couldn't stand that pressure.
I hope this doesn't sound callous- but you could have tissues tested for borrelia when he dies. But that would probably also have to be decided by his guardian.
My thoughts are with you. Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
I felt I was in the same quandry with my mom. When I found out I had Lyme, I was sure she did too. By that time she had already had 3 major strokes and was in no position to handle herxes, the pain, the "everything."
Besides that, she was in assisted living care and trying to handle all that with a "third party" would have been next to impossible.
Has your brother been receiving immune suppressants?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I think you know the answer already.. and want some backup. Ok, you got it.... Chances are he's been getting immuno-suppressants for years now. I'll bet a CD57 turns up a pretty low number.
The logistics of getting treatment might be pretty tough, and you'd probably need more family support than you're getting, to convince his ducks to alter his treatment.
But after all this time with nothing helping, I'd think they would jump at the chance at a course of treatment that might improve things. Maybe a trial run of abx for a few months??
I feel for ya....
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
robi,
As others have said, this is a hard one.
I went thru a somewhat similar situation with an immediate family member to pt of needing and getting nursing home care.
It is hard to be the relatives in nearby and it is also very hard to be the one who is far away.
I wish you and your family the best. Hopefully, the path to take will become obvious.
posted
Robi: My situation sounds a lot like your brother's except for the mental stuff. Here is a copy of a post that I wrote at the end of September 2005:
I was dxed for MS in 1997.
At a friend's suggestion, I made an appointment with a LLMD in early 2005.
Since May 2005, I have had the following tests done:
Igenex IgM and IgG tests Stony Brook IgM and IgG tests Igenex Spinal Tap test Babesia Fish MDL Spinal Tap test Imogen Spinal Tap test Brain MRI Spinal MRI Cerebral Spec Scan CD - 57 Test 55 tubes of blood for various other tests - including HIV and Syphilis - both NEGATIVE!
As a result of all this testing, in addition to keeping all these labs in business, I tested "Negative" for a Stony Brook Lyme Immunoblot in connection with the Spinal Tap, although non-specific banks identified were IgM (bands 18,28,37,and 90) and for IgG (60).
Tested positive for an Igenex Babesia Fish test.
Tested postive for an Igenex Lyme test: IgM bands: 23,25,28,41,and 93; bands 18,30,31,39,45, and 66 were indecisive. For IGG, band 58 was positive with bands 30,31,39,41, and 45 being indecisive.
Had a CD - 57 test score of 24
No meaningful change in my brain or spine MRIs over the last 8 years.
Cerebral spec scan was 'cloudy'.
Went on Minocycline for 10 days and had an allergic reaction to it.
What should I do next?
All responses are appreciated!
I truly believe that I have Lyme and hopefully with the help of Dr. L in Westchester I can defeat it and reclaim my life.
I have not missed a day of work due to the MS ever. For the Lyme, I am on a combination of Zithromax and Mepron. I am not sure if it is accomplishing anything as the only side effect has been a decline in my balance.
Any thoughts/comments are truly appreciated.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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IgM [QUOTE]all bands negatiive except 41 which is IND His PCR was also negative for Lyme So .......... what ya'll think? robi
Igenex is very good, but I think even they will tell you the test isn't totally foolproof. If the symptom sequence is totally indicative, I would be surprised if a lyme-literate doctor didn' t treat anyway, knowing that the consequences of delaying treatment are far worse than treating unnecessarily! DaveS
[ 13. December 2005, 01:07 AM: Message edited by: HaplyCarlessdave ]
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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david1097
Frequent Contributor (1K+ posts)
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posted
These are tough situations. A review of the original diagnosis might be in order as MS has several very consistent charactertics that differentiate it from lyme. It would also be usefull to review for NON SUBJECTIVE symtoms typical of Lyme. I captilize this as to hold any weight with the medical guys, it has to a visible and documentable symtom. On the other hand if one consistently tests positive for current lyme and other tick ournes infections than these additional burdens cannot possibly help the situation and shoudl be addressed although you can live quite well with things like silent babesia infections, I know this as I did for many decades)
So here are a few questions;
Was the MS diagnosis possible, probable or confirmed? this is the first step. This gives a very good indication as to how many of the characteritics MS markers were present. If properly analyzed, a lot of the evidence that suports the MS diagnosis are different than the evidence for Lyme.
Also, remember that it is a lot of people may have been exposed to Lyme bacteria in low doses and may be harbouring a sub clinical case (just like babesia) but the lyme may be operating in an assist mode to other pathogens, including a possible one that creates MS symptoms. (remember that the casue if MS is not known, although my personal beliefe is that it is either flea,or louse bourne, virus or bacterium).
This "assist mode" may explain why some people have lyme anitbodies but do not reposnd to antibiotics.
A clear marker for tyical MS are the recurring and then disappearing MS lesions in the brain. These typically take months to come and go. This, from what I can see is not at all typical of Lyme as once a lesion appears, it seems to stay until antibiotics are used (sometimes works soemtimes does not). This would be more like the progressive non remitting MS sub type, which is apparently not that common.
Another tip off is the location of the lesions, MS lesions like to form near the ventricles of the brain, in fact there is a special MRI sequence that is used to sense this (FLAIR). What is interesting is the fact the venticles contain the CSF and if the lesions are in that area, maybe it is something contained in the CSF that causes the problem. (Nobody to date has been able to see anything though.)
Another tip off is the effect of steriods. If they help and after use do not make things worse then lyme is less likely.
Lyme goes crazy when it sees steroids, I once read a paper (that I can no longer find) that stated that with dog studies (it was a veterinatian paper)that with administration of steriods, the Lyme became motile and was visible in the blood. The thinking was that with steriods being given, the bacteria would further diseminate via the blood stream and re-establish new centers of infection.
There are also the nerve conduction abnormalities which are typically found in MS. While these can also occur with Lyme, there are again less likely if not accompnied by some other symptoms.
Then there are the specific IgG protiens that are typical of MS. If these are present then that is a pretty strong indicator that it is not Lyme as a primary disease.
Finally another tip off is the frequency of recurance. Lyme is typically a roughtly 1 month cycle (this is one of the reasons why women have so much touble getting some Dr's the believe in their symtoms). The most common forms of MS have a much longer cycle, maybe 4 to 6 months.
In terms of what to do, if it is Lyme and Lyme alone then antibiotics will do SOMETHING to help. If it does nothing at all, especially if different antibiotics are used then this is not very supportive of Lyme as a primary problem.(it might be some other tick bournes disease, known or unknown) In all cases, the use of steriods is not a good option (but maybe the only one).I have little knowledge in this area but a better option may be to try some of the proven immune system aids (I think one is some type of human thalamus extract from germany ; but I am not all sure of this) since if MS is a pathogen based disease, an inproved immunue response may help the situation ( and then again it mght make it worse through the production of pyrogenic lyse fragments).
Just throwing out some ideas.
Posts: 1184 | From north america | Registered: Feb 2003
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
I am truly thankful for all the heart felt and informative replies. Each was so helpful to me. Here's the sad part..... I talked with my mom and she said she can not pursue this. Se said he is way to sick and uncooperative. If it made him worse he (and perhaps she) could not take it.
I am not there so I don't know. This all seems so cruel to me. I am helping myself but if one cannot help themselves is then that the end? We have billions to fight a war but not to heal those in our country who desperately need it?
I don't know what to do here........... maybe I should go down there and deal with this. I thought this was a lesson for me in helping others ....... may it is a lesson in acceptance ....... maybe there is something else I am missing........
Again, thanks for ALL your responses........ I guess this is over now.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
up ........ just so ya'll know what happened
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
I was diagnosed with MS for about 18 years until I figured out it was Lyme on my own. I was told "it might be MS." All these years went by with drs just being comfortable and sure of their initial thoughts. I can understand the struggle.
From what I've gathered IND bands mean they saw something so it's not negative. It's highly suspect. Together with a clinical diagnosis of history and symptoms, I think that's enough.
This is what Dr. Charles Jones has to say about the western blot (http://www.personalconsult.com/articles/drjonesapproach.html): "Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93. Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease."
As mentioned before, the right antibiotics show some effect on Lyme. I had symptoms improve. I wish your brother the best on this.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by robi: IgG all bands are negative except
23-25 IND 30 + 31 IND 34 IND 39 IND 41 +++ 58 + _______________________
IgM
all bands negatiive except 41 which is IND
His PCR was also negative for Lyme
So .......... what ya'll think?
robi
Robi did the Dr put him on abx's? before these tests? Because if hes been infected that long its bb hiding from the immune system responces and whats not hiding is holding all his antigens there attached to the spirochete.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
No he was not put on ABX before the test. The Dr. didn't even really want to do the test. It was drawn at his neurologists office .... enough said. When I spoke to the dotor on the phone (before the test),he was a real jerk. He said to me there are "Lyme Friendly" doctors out there that like to dx Lyme and many other moore serious dx go undetected. I wasn't up to arguing with him.
The test was done and he thinks, of course, it is negative. Of course we know better. If youread above, you will see the next to impossible situatin we are in. The only way I could fix this is if I moved to where they were and took charge. I am not able to do that in any way at this time. I am very sad .......... Thanks for your input.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
He sounds pretty bad and this is a bad situation its to bad you couldnt convince him or your family to do IV for a few weeks maybe a month and see a improvement.
Iam so sorry for you and your brother.
23-25 IND that means saw something 30 + kDa OspA 31 IND that means saw something 34 IND that means saw something 39 IND that means saw something 41 +++ kDa FlaB Flagella or tail 58 + Heat shock protein
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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