Did any of you have Lyme testing?

A forum for the discussion of antibiotics as a potential therapy for MS

Did any of you have Lyme testing?

Postby PattiD » Sat Nov 05, 2005 2:13 pm

Before we found your board and the MS-bacteria connection, my husband was in the process of being tested for Lyme again. Last year both the Elsa and Western Blot were negative/indeterminate.

Igenex the lab we used has a broader view point than CDC. We received the last results this week, the IgM was negative by CDC and indeterminate by Igenex, his IgG was positive by both criterias.

IgM indicates a current infection and IgG indicates exposure to the infection with the body creating antibodies to fight it-meaning long term infection.

Now we are wonder if has Lyme or if this indicates a strong bacteria infection some kind. The lab recommends a panel of testing to look for co-infections. Can CPN only be detected in the spinal fluid?

Thank for your comments.
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Postby SarahLonglands » Sat Nov 05, 2005 2:54 pm

The lab recommends a panel of testing to look for co-infections. Can CPN only be detected in the spinal fluid?


No, it can be detected in the serum, but as with lyme it is very difficult. I was tested for both CPn and lyme. I was nearly negative for one and completely negative for the other. However, once I started on the abx I felt straight away as though I was getting better. That was over two years ago and I am still not completely better, but largely so and with a diagnosis of aggressive progressive MS this is more than I could have hoped for. The abx mentioned here, whether the Vanderbilt or the Wheldon regimes, are all suitable for either disease. I was treated empirically by my husband, David Wheldon.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Thanks,

Postby PattiD » Sat Nov 05, 2005 3:35 pm

My husband started the protocol two weeks ago, but if it is Lyme, most lyme doctors recommend stronger abx at the beginning. I am concerned at starting slowly with the abx because his progression has been quick and we want to preserve what he has.

I was just curious if anyone's test showed positive IgG and they were told they had lyme. I know our doc is taking the weekend to ponder the results and some of the abstracts regarding ms and lyme.

Thanks for the comments.
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Postby mrhodes40 » Sat Nov 05, 2005 9:10 pm

Wow, Patti you have a gem of a doctor! Pondering your issue over the weekend and reading up? That's good! I was diagnosed with MS in '93. I also had seronegative arthritis at the same time- very suspicious for lyme and had taken a long backwoods hike 3 months before that in shorts (I think they're cute with those hiking boots and rag socks ---Fashion first in the woods I always say...) Anyway, the tests were not very good back then and I was negative. I always felt coming down with the particular combination of illnesses (MS and seronegative arthritis) in one week was a bit of a stretch. It always seemed likely to me that lyme was a good choice, in spite of that negative test, because it can cause both issues.
Anyway, I am not much good for your information gathering as my test is ancient and not even comparable to today's panels. In fact, my neuro told me I could not have it because we are not in an area where the tick is (WRONG!)
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Postby mrhodes40 » Sat Nov 05, 2005 9:11 pm

Well! I accidentally made a double entry so have to delete this one.
Hi everyone!
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Re: Thanks,

Postby CureOrBust » Sat Nov 05, 2005 11:11 pm

PattiD wrote:I was just curious if anyone's test showed positive IgG and they were told they had lyme


I was tested for Lyme, and it was not found (but as everyone says, false negatives are common). If I was found to be positive, I probably wouldn't be on a site for MS.

I would guess that most people who ARE diagnosed with lyme, would not be on this board.
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Postby SarahLonglands » Sun Nov 06, 2005 6:43 am

Patti,

Don't worry that your husband is on too small a dose, it is better to be on it than nothing at all. If a lyme doctor eventually decides on a larger dose, you just increase it. For all I know I might have had lyme rather than CPn, or both, but I still got better.

Sarah :)
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby kitkat2 » Sun Nov 06, 2005 12:49 pm

[quote="mrhodes40"]<snip>
Anyway, I am not much good for your information gathering as my test is ancient and not even comparable to today's panels. In fact, my neuro told me I could not have it because we are not in an area where the tick is (WRONG!)
***********

Geez!! They said this to you, too? It is such a bunch of hooie! :x
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Postby Melody » Sun Nov 06, 2005 1:57 pm

Actually we live where ticks are and you would know it if you had one attached. It's not like a flea where they sneak in it's more like a blood sucker another one predominate here. You know as you must detach them.John I am sure does not have lyme
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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thanks for your replies

Postby PattiD » Sun Nov 06, 2005 2:57 pm

We lived in Kentucky for late 1997-99 (CDC says ticks are not lyme in KY)and my husband has lived in Ca and PA where their are endimic ticks. All the neurologists-(3) have said he does not has lyme and we should accept his progressive ms diagonsis.

Yes, he even remembers a rash and pulling off several ticks, but the docs still are not believers. With the most recent test, our local doc is pondering the results now.

Melody is your husband stabilizing? My husband just quit Coxpane because he dislike the daily shots and felt it is was doing anything to help him.

I guess we are not sure what to make of a positive IgG lyme test. No one has said-yes he has lyme, which is why I wondered if any of you had a positive IgG test. I wonder if this is where the relationship between ms and lyme comes from.

Thanks for your comments. Its just hard to believe the docs at this point. We do have hope with the abx and the adjuncts.

PattiD
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Postby Melody » Sun Nov 06, 2005 3:12 pm

John has totally stabilized. His last test in October were great.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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Postby EricJohnson » Sun Nov 06, 2005 3:54 pm

Patti

Google some photos of the lyme borreliosis rash, erythema migrans, to see if that looks like the rash he had. The typical rash is somewhat variable, but not terribly similar to any other rash. Read multiple sources if you want to get all the details. Please note that the rash fails to occur in 50% or more of lyme borreliosis cases.

The answer to your question is yes, there are doctors who would very likely diagnose your husband with lyme borreliosis based on a positive IGeneX serology and MS symptoms. They are members of the professional organization ILADS. Other doctors, including most MS neurologists, would disagree entirely, but personally I find they strongly overstate the power and completeness of their arguments. They may also criticise IGeneX, which I dont think has published any work investigating the value of their testing.

The links between lyme borrelia and MS are these:

- demyelination has been observed in a percentage of cases dx'd as neurologic lyme borreliosis (the dxs may be arguable; as you probably know MS is a "soft" dx with very debatable bounds, and some might say these patients have MS)

- in a controlled pilot investigation, Brorson et al directly detected spirochetes in the cerebrospinal fluid of 10 MS patients. Full text of this paper is on google; email me if you want to also see the pcitures.

- theres a few other odd links

IMO, the meaning of borrelia in chronic illness is unclear. Clearly, there are many who had definite acute lyme disease (the erythema migrans rash is distinctive) whose health was permanantly ruined, and who respond very well (but often very slowly) to antibacterials. Quite the strongest likelihood IMO is that these people have a chronic, refractory, virulent lyme borrelia infection.

However, I am not satisfied that a high lyme serology means lyme is ones sole/primary infection. After all, ill health might allow a harmless, small persistant borrelia infection to multiply limitedly, causing the serology to become positive. However, I am familiar with the history of antibacterial treatment in quite a few MS patients and patients with other poorly-understood diseases of immune activation. Results are rather favorable on average, with much variation. IMO, it is very difficult, and not overwhelmingly important, to discern with much confidence the identity of any bacteria that may be involved in ones disease. However, diagnosis is a practical art, and the fact that many ILADS member doctors would be likely to treat for lyme in your husbands case may be of practical use.

If I havent completely bored you yet, you might read my post at the bottom of this page for more details: http://tinyurl.com/8hvf2

Risks should be studied and understood by anyone contemplating a non-standard treatment.

I dont have MS, I have CFS. Please note, I study disease and microbes, and may enter grad school next year in this capacity, but I am currently a college undergraduate with no qualifications whatsoever.
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Yes, you responded to my posting on the Cpn site

Postby PattiD » Sun Nov 06, 2005 5:08 pm

I believe this last test shows my husband has some time of infection or infections. I know David Wheldon discuss polybacterial infections. Maybe this is what the test indicates; however it did match up to the bands for Lyme.

I had read an article about tinz... from the same author you mentioned. Since my husband's disease has progressed so rapidly, I hope his doc is willing to give him stronger abx.

My husband told the docs couple years ago that he recalls a rash, but his memory is affected enough that he is not sure if it was heat or a bite at this point. However, he did pull off many ticks off of him during our 2+ years in Kentucky.

Thanks for you comments.
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Postby EricJohnson » Mon Nov 07, 2005 9:22 am

Heres a little more of my viewpoint. This is the sort of finding that informs my feeling that empirics are at least as important rationale:

http://www.pubmedcentral.nih.gov/articl ... tid=174684

The MBC is the minimum bactericidal concentration - the concentration of a given drug which will kill a given bacterial species (here, lyme borrelia). This is determined in vitro (in a test tue).

The CD50, as they explain, is the dose of a given drug which will cure at least 50% of a set of infected animals which have been given a certain infection (here, lyme).

(Note that the doses per kg that they gave the hamsters are NOT necessarily safe for humans.)

You can see how some of the MBCs correlate rather poorly with the CD50s. Therefore, if you were a Syrian hamster and only had test tube MBC data to go on, you might not pick yourself the best regime. And if you were a human and only had Syrian hamster CD50 data to go on, you might not pick yourself the best regime (tho the hamster situation and human situation are more similar to each other than they are to the test tube situation). And yet, all those data are still very worth considering.

Throw in the unusual bacterial persister states which may well be more prominant in chronic human diseases than in acute experimental animal diseases, and youve got even more hazy variables.

So - I also studied the Brorson tini paper you mention, but what attracted me more to tini was patient reports from patients with all kinds of immune activation diseases, from rheumatoid arthritis to CFS to whatever. Not everyone finds it a powerful/beneficial drug, but generally it and flagyl are considered pretty powerful.

All in all, I dont at all mean to say rationale is not important. Its very important. But its only one guide, an imperfect one, and patient experience is the other guide, and you have to sorta synthesize it all. Patient experience is more applicable, but less controlled. Conclusions made from uncontrolled patient data are more likely to be relevant to your treatment aims, but they are also more likely to be mistaken conclusions in which the action of an uncontrolled variable is producing some sort of illusion or artifact.
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Postby EricJohnson » Mon Nov 07, 2005 9:40 am

Hmm, trying to edit here but its not working. I just wanted to add that its not black and white between rationale and experience.

Not only are hamster infection data more meaningful for humans than test tube data... similarly, monkey data are more meaningful than hamster data.

Conversely, patient reports from people your own age, or who share disease similarities with you, are slightly more meaningful to your situation than reports from other patients.

So there is a whole range of applicabilities in both human treatment reports and experimental data / rationale.
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