posted 27 January 2004 18:15               

It will have a bit of outdated stuff (for newbies, the LUAT isn't being used as much now, if at all)

But you can't beat an expert talking about his field!

I've made small paragraphs out of this--- so it's been altered a bit.

cave76

Explaining Borreliosis (Lyme) Western Blot Tests

The Western blot is a type of test that is conducted for detection of borreliosis (Lyme), but is also used to test for infections other than borreliosis.

Borreliosis is a more accurate name than Lyme disease for this infection. Several different Borrelia may cause a similar clinical pattern in this disease.

Old Lyme is a town in Connecticut, not a disease. Borreliosis is the name that should be used.

There is no universal agreement on what defines a positive Western blot.

Good laboratories use different criteria to interpret borreliosis blots. At the 1999 international borreliosis and tick-borne infection conference, Sam Donta, M.D. lectured.

Dr. Donta is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis. Richard Horowitz, M.D. said the same thing in his lecture, at that same conference.

Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot. So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!

Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!

So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis. In my practice, many borreliosis patients also have babesiosis, another tick-borne infection that causes the same symptoms as Lyme borreliosis.

Babesiosis is caused by a protozoa, which is a different germ type than a bacteria, virus, fungus or yeast. The placebo effect would not explain a 99% response rate. Those borreliosis associated antibodies should not be there, in patients with symptoms.

A placebo is like a sugar pill, that has no effect. A placebo effect occurs because patients believe in the pill they are taking, even though it is a sugar pill. The human mind causes the response. Placebo effects should more likely be about 20-30%, not a 99% response rate.

False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week). The right test to screen for borreliosis is the Western blot. Research I presented in Bologna, Italy in 1994 at the international borreliosis conference showed this.

Other screening tests, such as the IFA, EIA, ELISA, and PCR DNA probe were often negative when the Western Blot was positive! Other doctors like myself who diagnose and treat a lot of borreliosis patients, go straight to the Western blot as their screening test.

Medical articles abound stating that it is best to do a screening test, such as an ELISA, and if it is positive, then confirm it with a Western blot. But the ELISA is often negative when the Western blot is positive so, the right test is the Western blot.

It lets you see exactly which antibodies are present. The "right laboratory" means one that specializes in borreliosis testing. In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs. The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed. If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics.

You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week. Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.

The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done. This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens.

Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species. In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.

Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.

Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons. To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.

Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.

Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot. If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.

When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.

In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.

If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity. 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.

As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics.

Sometimes multiple antibiotics have to be tried before the patient feels better. Antibiotics may actually help with the laboratory diagnosis. But patients need to be off antibiotics about 10 to 14 days before the Western blot is repeated. This sounds like a contradiction. Antibiotics may help convert the test to positive, but patients need to be off antibiotics when the specimen is drawn.

It is well documented in medical literature that the presence of antibiotics may cause false negative borreliosis testing. Therefore, your system should be free of all antibiotics for an accurate blot result.

When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.

What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system. That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.

If a borreliosis Western blot is going to be positive, it is usually the first one that is positive. The second blot is the next most likely to be positive, and so on, until the fifth blot.

After that, the curve levels off for conversion to positive. This is based on research I presented in Bologna, Italy in 1994. Some patients had borrelia-associated antibodies finally show on their tenth Western blot! Two Western blots from a reliable lab usually gives the answer.

If a third test is needed, a Lyme Urine Antigen Test (LUAT) is done instead of a third Western blot. Positive LUATs correspond very highly to patients getting better with antibiotics. False positive LUATs have not been a problem in my practice. The LUAT finds the actual antigen (Borrelia burgdorferi itself), so arguably it should be the test of choice, but the Western blot is rn6re widely accepted, even though it looks for the antibodies against Borrelia burgdorferi.

The presence of antibodies are indirect evidence of an infection, not direct evidence like shown in the LUAT. On the Western blot test result form, please note what is "considered positive" and "considered equivocal." Equivocal is another way of saying suspicious or almost positive.

Below this are the ASTPHLD/CDC recommendations. The CDC stands for the Center for Disease Control. I have been in attendance at the international borreliosis conferences when the CDC said their recommendations are for disease surveillance, not day-to-day clinical medical practice. I am not in the business of disease surveillance. My job is to try to help sick people.

The CDC recommendations do not include the 31 and 34 Kda bands of the blot test. These two bands correspond to outer surface proteins A and B respectively (ospA and ospB). In the world of borreliosis, these are two of the classic hallmark Lyme antibodies. But the CDC does not even have them in their recommendations.

You may see why I and other borreliosis clinicians do not agree with using the CDC criteria in everyday medical practice. Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands. These bands may be produced by Borrelia burgdorferi, but are not nearly as specifically associated with Lyme borreliosis as the starred bands. These starred bands are classic hallmark borrelia-associated antigen-antibody complexes.

An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive. But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call it negative. This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern.

As you can see, borreliosis is very controversial. It would be alarming if I was the only clinician who thought that the CDC recommendations should not be used for day-to day medical practice. Many borrelia clinicians do not use the CDC criteria. This is obvious by the fact that the IgX laboratory uses different criteria for positive. Again, in my opinion and others', even one borrelia-associated antibody is significant, if symptoms exist. The classic triad of symptoms for borreliosis is fatigue (tiredness, exhaustion), musculoskeletal pain (joints, muscles, back, neck, headache), and cognitive problems (memory loss, trouble concentrating, difficulty remembering what you read, depression, disorientation, getting lost).

But there are about 100 symptoms on the borreliosis questionnaire I use. Borreliosis may mimic or imitate virtually any disease. Patients often tell me that other physicians they have seen use the CDC recommendations. This is unfortunate, in my opinion, since these physicians are not in the business of disease surveillance, like the CDC is.

But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.

One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.

With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years. Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies. Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it. But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM. In regard to the outer surface proteins, think of it like the skin of a human.

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C. The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp B).

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

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.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi. In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).

posted 27 January 2004 18:41               

This is a keeper.

M

posted 29 January 2004 18:18               

Thanks.

posted 30 January 2004 14:01               

The date of 1988 rang a bell for me, as well as many other things. I know he presented a paper at the conference in Bologna in 1994 also.

Oh! I just dug around and found my copy of Dr C's explanation of the Western Blot....this is indeed his!

posted 30 January 2004 15:00               

Was that a journal article? Or a presentation at a conference?

Since it may be used to *wave under the nose of a duck* the more clout it has the better!

posted 31 January 2004 15:49               

The title is "Explaining Borreliosis {Lyme} Western Blot Tests"

posted 01 February 2004 06:55            

Why is testing inaccurate (Western Blot)?

"The levels of antibodies (immunoglobulins) decrease in experimental animals (mice, rats and hamster) by up to 60% when the supply of magnesium is significant reduced.
There is a direct correlation between magnesium deficiencies in rats and reduced immune defense against allergic reactions and cancers, in particular leukaemia and lymphomas."
http://www.1stvitality.co.uk/az/magnesium/

The above website has changed, so go to this pubmed abstract instead:

Proc Soc Exp Biol Med. 1975 Mar;148(3):620-4.

The effect of magnesium deficiency in mice on serum immunoglobulin concentrations and antibody plaque-forming cells.

Elin RJ.
Therefore, magnesium deficiency has profound immunosuppressive capabilities in mice by significantly reducing the number of antibody synthesizing cells and serum immunoglobulin concentrations.

PMID: 1093189 [PubMed - indexed for MEDLINE]

E. Required by immunological process. Magnesium, immunity, and allergy: Mg is required for several steps of immunological reactions
1. Lymphoblastic transformation, a prerequisite of secretion of antibodies by lymphoblasts, requires Ca2+ and Mg2+
2. Mg is required for synthesis of proteins, immunoglobulins included
3. Antibody-induced complement activation is Mg dependent
4. The antigen-immunoglobulin-complement reaction induces degranulation of the mastocyte
http://www.mdschoice.com/elements/elements/major_minerals/magnesium.htm

Our own antibodies are "damaged" (Fab portion). Look at what restores their bactericidal (killing) effect:

Characterization of the physiological requirements for the bactericidal effects of a monoclonal antibody to OspB of Borrelia burgdorferi by confocal microscopy.

The bactericidal effect of Fab-CB2 is not dependent on the induction of spirochetal proteases but is dependent on the presence of Ca2+ and Mg2+.

Supplementation of Ca2(+)- and Mg2(+)-free medium with these cations restored the bactericidal effects of Fab-CB2.

The mechanism by which a Fab fragment of an antibody destroys a bacterium directly may represent a novel form of antibody-organism interaction.

PMID: 9125579

A “novel form of antibody-organism interaction?” I don’t THINK so! Read once again the above explaination of one of the many jobs of Mg. This has been KNOWN for a long time.

If you want a more accurate test, probably taking some Mg (and with it a SMALL amt. of B6)or better yet...CoQ10 with soybean oil and vitamin E in it (read the back label)...will help.

The above is part of my post, "In a nutshell part 1"

posted 01 February 2004 13:13               

As a newbie, I have to thank you for posting this. It was a wealth of information for me.

The only lyme test my duck would give me was a PCR test, when that came back negative, he told me, "you don't have lyme".

Now I understand why lyme is so hard to detect, and why you can't just go by blood work alone, and why you need the Western Blot.

Thank you so much!

posted 01 February 2004 13:58               

There is no doubt that I had LD for close to 10yrs before being dx'ed. I was told I had FMS. I am going to try and make this short and not go into all the details of how I treated my FMS but one thing I did do was to take 400-600mg of MG with malic acid (among other things). Now hubby was advised to get tested for LD because I had it. Trust me, we were blown away with his results.

Now according to the article that cave has posted here, hubby tested positive for 8, yes 8 bands. We were told by the HBO center that it was one of the highest test results they have seen. However he had little if no symptoms! Now I on the other hand had almost all symptoms and TESTED NEGATIVE on the IgG and postive for IgM. Even though I know without a doubt it was almost 10 yrs ago that my symptoms started.

Now heres my thought/? and I would love some input on it.....this article states...

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.

posted 01 February 2004 14:37               

Just to clarify--- WB is bloodwork.
But it's the best blood work for Lyme IF a person is looking for antibodies.

(O.K.-- I know that's up for a little bit of debate, but trying to keep it simple, at first)

But looking for antibodies (in Lyme) isn't completely reliable---- even using IgX tests. More later on that, from me or someone else.

PCR blood tests are much much more reliable--- almost 100% percent?---- but only if you get a positive!

If you get a negative PCR (blood OR spinal fluid or ?) it only means that that sample didn't *catch* a spirochete's DNA.

(O.K.--- that's a little simplified also, but stick with this for now)

The analogy used a lot to describe this:

Imagine a stream with lots of fish in it.

You dip a net in.

You don't get a fish.

BUT there ARE fish in the stream.

So you got a negative--- but it proves NOTHING!

Now, krystan, you didn't mention WHAT PCR test your duck performed. IgX now has *some* blood PCR tests that are more reliable.

I'm not too up on those---- anyone else?

Clarice--- You wrote:

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.

I'm going to nit pick here for a minute.

I'm not so sure that Band 41 can be called the *most common* borreliosis antibody.

What I *think* should have been said is that Band 41 is the most common band to show up on the WB. (But willing to proven wrong.)

Band 41 is present in many diseases---- from gingivitis to syphilis. Cross reaction takes place.

So if a person even just has periodontal disease (gingivitis) their tests may show up with # 41.

So, it may be the most common Bb antibody BUT the other reasons should be noticed.

About seronegativity----- I had *nothing* but seronegative WBs with a scattering of equivocals.

But when I finally had a spinal tap done, it showed up positive. (Got *lucky* and got a positive on my first spinal)

IOW---- that *net* caught a fishy in the first dip!

Read Tom Grier's *Reasons for Seronegative WB tests*---- It's here somewhere, only on google.

Many many Lymies only show seronegative. It doesn't speak as to IF or how BAD your case is. My Lyme was about as bad as you can get---- and VERY seronegative.

BTW---- I showed seronegative both before I ever started Mg supplements and after.

cave76

posted 01 February 2004 14:51            

Okay...let's see if you all can "visualize" this...

Picture a worm. Now picture a bag that will totally envelop that worm. Shrink wrap it, so to speak. In come the pac men to grind up the entire package. Then gotta haul the garbage out.

The worm is the spirochete.

The bag is our own antibody specifically made to "fit" that bug - CELL WALL FORM. It's a perfect fit. (In reality it's called a lock and key mechanism. Pardon me, but I am trying to really, really simplify this for all to understand.)

The pac men are the macrophages.

The garbage is the left over toxins.

This is what's SUPPOSED to happen.

It doesn't.

Why?

The bags have holes in them. They are damaged (Fab portion). Our body needed enough Mg and Ca to make strong perfect bags (antibodies), but Bb (the worm) was using up too much Mg, so the bags had holes in them and allowed the worm to escape.

So...away crawled the worm...into the cells to munch away on Mg in the powerhouses of the cells.

The body says, "WHOA! Major problem here!!! Our own antibodies don't work...gotta send in some help...fast."

In comes helper TNF alpha. An inflammatory cytokine. It's job is to stop calcium from entering the thyroid cells and harming them. The thyroid controls the BMR...basal metabolic rate. The body KNOWS something is amiss (is that spelled right?).

Suddenly...instead of using oxygen to make energy (36 ATP), sugar is being used...only 2 ATP at a time. Not enough energy! TNF alpha is ALSO responsible for getting rid of all the imperfect antibodies (immunoglobulins)...and that's just for starters. These are some of the reasons WHY our body choses this cytokine helper above all the rest. We end up stuck in the Th1 - default pathway. But if you alter that pathway...what are the consequences?

Meanwhile...the body goes into a full court press to save our ....

Inside the neutrophils - the most numerous of the white blood cells is something called calprotectin. It binds zinc. This effects the thymus gland. Since many OTHER pathogens need zinc to multiply, the body sends a lot of these to protect.

In addition...the body goes into an iron "save mode" for the same reasons. The spleen can enlarge. Many OTHER pathogens like iron to multiply.

Eventually the pituitary will shrink...LESS growth hormone = less insulin = to help to put the brakes on the glycolysis pathway also and hopefully switch it back to the far healthier and healing oxygen pathway to make ATP...this pathway,Bb definitely does NOT like!

Then there's the adrenals...

Okay...just absorb the above first.

P.S. It is possible that your gender and "time of month" can also play a part...or even HRT drugs you may be on - as there is an estrogen - Mg connection - PMS issues). For certain, your diet will. Beer lovers (dark beer)...anyone get a positive test on the first shot at an accurate WB? Alcohol converts to sugar...and dark beer contains Mg...2 of Bb favorite snacks.

posted 01 February 2004 15:00               

O.K. kiddies,

Now we have the Fishy and the Worm. See a pattern here?

posted 01 February 2004 15:37               

I have no idea what kind of PCR test it was (it's all very foreign to me).

I do know that it measured my SED rate (which was in normal range).

It was tested at a lab in Virginia which some of the folks on here told me is *not* a lab that specializes in the diagnosis of lyme .

posted 01 February 2004 20:18               

Well, then if it wasn't a Lyme specialty lab--- it's all moot anyway.

What's interesting to me that so many of *us* have a normal SED rate (measures for infection)---- when we have a raging infection---- i.e. Lyme!

posted 19 February 2004 14:26               

Yes on the dark beer and positive WB on the first try.

Does this mean that my old habit of drinking dark beer caused me to have more antibodies to the Bb? Maybe from another point of view, I had more Bb in my system since I was feeding them so well that I then had more antibodies for them?

I'm not sure I get the gist of the beer/WB question.

Thanks in advance,

posted 22 May 2004 11:50               

Wow, a REAL newcomer---- one post! Welcome to this group, although you may have been lurking before.

You asked an important question:

I have 3 pos. pcr's by UA,

one by endoscopic biopsy,

and a pos. C6 peptide test among other hard evidence.

So, just how important is the Western Blot compared to all this in my situation. Please help.

I'll give you my answer (remember I'm not a doctor) and then hopefully others will come along with their opinion.

First--I'm curious about the endocopic biopsy. Am I correct---- was that also a PCR done by tissue culture?

If so, that sounds pretty positive to me!

The UA--- Urine Analysis. Was that an antigen test?

The C6 peptide------ that test has fallen out of favor-----for reasons I can't remember right now. (Help me, guys?)

What other *hard* evidence do you have?

Off hand, (but I probably don't have all the information to make a truly informed *guess*)------- I'd say that positive PCR results from a tissue culture sound pretty positive. If that's what it was.

The WB is one of the best antibody tests, but they aren't perfect. Even the labs that developed them know that.

And the steroids used may certainly prevent any antibodies from showing.

I've only had seronegative WBs. In 10 years. But I had a (lucky) postive PCR spinal tap, which for my insurance was the go ahead for IV tx.

But, all insurance company's are different. They can be as stupid and unhelpful as they want! And often are.

Will your llmd fight for you? Write a letter to the insurance co.?

Do you have documented proof (pics or a doctor observing) the EM? Are they bulls eyes or *just* a rash?

Sounds like your doctor needs to read the information at www.ilads.org

Have you read much about Lyme? You sound like you have------sometimes it comes down to the patient doing most of the foot-work.

Have you had ANY tx for Lyme, yet?
Are you seeing a bona fide LLMD?
If not---- can you get to one?

Waiting to hear back from you. And for others to add their opinions.

posted 23 May 2004 11:38               

Thanks for the details----- that helps *us* with understanding what you've been through---- which is considerable.

It does seem as if you've been through the mill, as most of here have. And because of the ignorance or studpity of some doctors, they haven't really done a thorough job of puttting you through a differential diagnosis.

As is SO common with Lyme.

You wrote:

Later after the geniuses at the hospital let me out, they told me that I couldn't have lyme since the tests they had done over the summer weren't "much different" than the ones I had later.

Wrong! ----Of course I'm guessing--- but I'd bet a bundle that all the tests you had done for Lyme were ELISASs and done by a lab that isn't a Lyme specialty lab.

(Come to think of it, I think it was some type of antibody test, but I haven't had any pos. tests of that type since.)

I bet they were too. The ELISA is the cheapest (and one of the worst) tests to give for detection of Lyme. So bad that IGeneX won't even perform them.

Do you have copies of those tests, or can you get them?

I still have a question about your *PCR* tests.

PCR blood tests are different from PCR tests done on spinal fluid. I'm not that up on the reasons why blood PCRs aren't quite as reliable as a PCR done on tissue or spinal fluid.

When you mention a certain PCR test, can you just define it as blood or spinal fluid or tissue or?? Just so I know? Thanks.

Your present doctor does sound like she's very good----and if you like her and have rapport, that's important.

When you first started tx in '97 how long were you continuously[/] on abx?

You wrote:
[i]During that time I didn't have all the full-blown symptoms, so the Dr. gave me a break for a while.

There might be a case made for not taking a break (voluntarily) from abx, as long as you were getting pos. test results.

I don't think my llmd would suggest that; and I know that I'd be nervous, even if my symptoms had mostly gone.

There are many people with Lyme who will always come out of remission if they stop taking abx. This can be because of co-infections.

Have you been tested for the other tick borne diseases?

Sometimes it's because the infection just never disappears (hides in places in the body not easily reached by antibiotics).

The patient may feel good for a while, but when the drug is taken away the spirochetes *come out to play*.

However, there are also many people who after getting treated, go into remission and stay there! So don't give up hope.

My layman's thoughts are--- you're proving hard to treat (NOT impossible ) but taking vacations from abx while still getting positive test results----- that doesn't sound like something I'd be comfortable with. Or my llmd.

Please don't take offense--- but it sounds as if your present doctor might benefit by working in conjunction with an llmd. She sounds as if she might be amenable to that. Then we have another llmd to add to our lists.

To recap---- can you tell us what the PCR tests were--- blood or ??

Do you know what lab did them?

Can you get copies of them?

And what were they done "for"? (Lyme?)

I'm sorry you've declined so far. Lyme has a horrible way of doing that. Since you seem to respond fairly well to abx, I'd guess that very long courses of abx would help you a lot.

Many shorter courses sometimes just result in antibiotic resisitance. Just my guess.

Waitng for your reply.

cave76

Oh, BTW--- if you can break up your paragraphs into very small chunks, that would help me and many others. Lot's of white space.

My/our brains don't assimilate large chunks of text. Thanks to Lyme.

posted 23 May 2004 12:53            

I guess my lyme brain couldn't even think of
an idea like that.

The PCR's have been done on blood, urine and tissue samples. So far the urine samples have come back pos. The other was the biopsy.

The tests have been done at MDL labs I believe in Mt. Laurel NJ. I even heard that this lab has been used by the FBI for PCR evidence in criminal cases.

As for other tick-bourne illnesses, My Dr. ordered a full panel with the biopsy.

No real findings, only 2 fungal infections and the bacteria that causes "Gulf War" syndrome, (and of course the Bb PCR).

I have been treated for the other co-infections.

I never thought to ask for copies of any of the test results. I guess I should.

I don't know how much longer I could go for one course of antibiotics.

They tried to go 180 days once and I only made it about 112 before getting a PICC line infection which landed me in the hospital.

On average how long have all of you been on therapy?

what do you consider short-term?

Long-term?

Also sorry if getting all the info has been like pulling teeth,

but as I know you understand it's really hard to keep things straight in my head right now

PS
The Dr. that let me wait was at the same LD practice,
but not the really sharp one I'm seeing now.

I know there's something somewhere that's going to help... just haven't found it.