Help! What does this mean? I have been feeling ill for some time with neurological symptoms, fatigue, all over pain. So my neuro ran numerous blood test. What does it mean when the following bands are positive? Any help would be GREATLY appreciated ... thank you in advance. Also it was completed at Quest Labs.
You are asking the right questions. Here's the problem: there is a serious split in the medical community, in which standards for Lyme diagnosis and treatment were established years ago (see date above in your post: 1994 -- nearly 20 years ago), and the docs on that beat still cling to those standards, tho they are outdated. Time and science have marched on.
You mention that your doc is a neurologist. Neuros and infectious disease (ID) docs are particularly well known for having long ago stopped doing research on Lyme and its co-infections ('bonus' diseases often carried by the Lyme ticks), and because the docs who were around when Lyme was first recognized are well established in their fields and still practicing, their conclusions are still taken as gospel by all those who came after them in the neurology, rheumatology, and ID fields.
The two bands which you show positive on, 23 and 39, are specific to Lyme disease, meaning that those bands show positive *only* in the presence of Lyme bacteria. Why is that not enough for the docs to say you have Lyme? Because the diagnostic standards for Lyme which are used by your docs were established not for diagnosing a patient, but for epidemiological tracking of the spread of Lyme disease. The epidemiological data has to be of highest standard and purity, so that the conclusions of the disease trackers are largely unassailable -- but these standards should not have been adopted for *diagnosis* of a patient.
Why? Because, among other things, Lyme bacteria are immunosuppressive, meaning they mess with your immune system and fool it into not reacting to the presence of the Lyme. It's a survival technique of the bacteria, similar to that seen in AIDS, or 'acquired immune deficiency syndrome.' AIDS can be deadly, but Lyme usually is not, because the extent of immune suppression in Lyme is not as drastic as that in AIDS.
Unfortunately, the tests you had (likely Western blot and ELISA) measure not the presence of Lyme bacteria in your body, but instead the level of reaction from your immune system. A suppressed immune system will not show a lot of positive 'bands' (meaning markers).
Thus a double whammy: (1) a person with Lyme has a suppressed immune system, so the usual tests (which measure the immune system reaction) may not register positive, and (2) the number of positive bands required by common medical standards is excessively high because these docs are using the strict epidemiological requirements for at least X number of bands, so that research data are pure -- but this is too high a standard for diagnosis and treatment of real patients.
Thus you can have a cracking good case of Lyme, but the tests may not show it, and if the tests show it, the level may not be high enough under these misplaced standards.
Another confounding aspect is that Lyme bacteria have a significantly longer reproductive cycle than most bacteria, and it is when the cell wall is disrupted as the cell divides that the bacteria are most susceptible to antibiotics. Thus the usual treatment of a few weeks of doxycycline can be utterly ineffective [other than almost immediately after initial infection] because Lyme bacteria don't reproduce every 20 minutes like other bacteria, but instead measured in hours. Thus treatment for 10 days or a couple of weeks is insufficient except immediately after infection, but many of us do not know when we were infected ... I didn't.
Also, docs don't take into account that it's possible to have a low level infection with Lyme that just makes you feel tired and draggy, and then you can get another tick bite later (ticks aren't picky) that re-infects, possibly with additional diseases, and that can push the immune system over the edge -- it's all cumulative, but docs tend to focus on the present and don't take into account possible prior, low-lying infections that were already taxing the immune system.
And one more problem: shortly after infection with Lyme, the bacteria encyst themselves in slimy shields called biofilms, where the immune system cannot 'see' the bacteria to destroy them. Doxycycline cannot pierce the biofilms, which the usual MDs don't understand or acknowledge, but Lyme specialists know that two medications simultaneously are required for often months of treatment: one drug to pierce the biofilm, and the other to kill the bacteria inside.
Unfortunately, infectious disease docs, rheumatologists and others who should be at the forefront of dealing with Lyme are not up with current research, for what I think are largely political reasons within the medical community: the docs who first 'discovered' Lyme a few decades ago are still high up in the field, and they are loathe to back down in the face of new information. Thus patients who see these docs may well be underdiagnosed and/or undertreated.
Other docs who understand more about Lyme are referred to by us patients as LLMDs, short for Lyme-literate MDs ... meaning simply that they 'get' what Lyme is all about. (LLMD is not a formal title.) They use other tests in addition to the IgG and IgM antibody tests you had, including a PCR (polymerase chain reaction) test which looks not for your immune system's reaction to the presence of Lyme bacteria, but instead looks for bits of Lyme DNA in your blood: a direct test instead of an indirect test. NonLLMDs scoff at PCR testing, believing that the older tests which rely on immune system reaction are sufficient. (Not.)
I personally went through 20 highly credentialed, trained and experienced MDs of various types before #20 ran the same kinds of tests you have had done. The test came back positive, but the doc sweetly and gently said, "Oh, you could not possibly have Lyme disease. I have patients with Lyme ... and they are all ... near death." Gee, thanks, doc. If death is a required symptom of a disease, ain't it a little too late to treat?
An old friend of mine back East has Lyme, and I knew it is nothing to ignore, so I took that positive test result and ran to an LLMD. I was then diagosed with babesiosis, a common co-infection of Lyme (carried by the same ticks) which is similar to malaria, as well as confirmation by other testing of a Lyme infection. (My LLMD was impressed that my initial tests by the previous doc were so positive for Lyme, because of the anticipated trailing off of the immune system reaction -- I was lucky.)
-- email to -- contact [at] ILADS [dot] org -- and tell them where you are located and how far you can travel ('I live in western Mass. but can travel to Boston') and they will send you name(s) of ILADS members. (ILADS is short for International Lyme and Associated Disease Society, a voluntary group for MDs of any specialty or area of medicine who are interested in Lyme. Their website is full of data, but don't be overwhelmed by it.) Remember tho that Lyme is still the wild wild West of medicine, and there is no absolute standard of diagnosis and treatment, so if you don't feel entirely at ease with the first ILADS doc you see, get another referral from ILADS.
Treatment, depending on what coinfections and on how ill you are, can take a year or more. Get somebody you're comfy with. It's not cheap, since many of these docs don't take insurance, but your insurance company will likely reimburse at some level. My theory was I didn't care what it cost, because I was non-functional as I was. In a contest between debt vs health, guess what wins.
Oh, and get and keep hard copy of ALL tests that are done through your Lyme adventure -- full copies of it all -- which doc's offices can be really obnoxious about, since they care more about saving copy toner than giving you the records you are legally entitled to. Be nice, but be persistent. Sometimes you end up going through a couple of docs before find the right fit, and having your own set of test results in you own binder that you can share with future docs is key. Otherwise a new doc is flying blind and you end up retracing steps already taken, which costs both time and money. I keep ALL my tests in a binder on my shelf.
Best wishes to you, and do let us know what you decide and how it goes -- we're always hanging around the electronic water cooler here -- and we've all been where you are -- you've got a diagnosis, and that is the first step. Go for it!
Thank you for the great insight and info. I will be emailing them today. I have had way too many symptoms such as falling into walls, positive romberg sign, brain fog aka broken brain, extreme fatigue, feeling of sleeping on a boat, pains and heaviness .... just to name a few.
They already ruled out many other illnesses and this is the only thing that came back with something positive.
My doc's receptionist called and said the tests came back fine. I hate that word fine it so 'ho hum' ... whatever attitude.
I will email and check out the website for resources. Also, do you know what directly effects the 23 igg and 39 igm ... is it just lymes or can it be a number of things?
The test you had is for Lyme only; separate tests are done for the other ailments. That's another reason a good doc is necessary, to talk with you and parse the various symptoms you are having and then to decide what to order tests for.
To me, my symptoms were just one big ball of fuzzy yarn, and I couldn't line them up in any particular way ... they blend and overlap in a crazy fashion. The doc will be able to make an educated guess of what to test for.
Gotta love the receptionist's attitude, huh. Your decision to post here shows you've got the grit to carry on -- and that is the first and most important thing. 2d: the right doc. 3d: get well and get back to real life!
Part of dealing with Lyme is learning to use collateral sources of information -- so you might, in addition to email ILADS for a referral, snoop around online for something like 'lyme disease maryland' and see what pops up. Sometimes local patient websites/groups have good leads on useful docs.
Oh, one thing I didn't mention: Many and maybe most LLMDs do *not* want to be named in public, because the split in the medical community (with the Lyme nonbelievers holding high positions in local and state medical boards, for example) makes it better for LLMDs to stay out of the spotlight or risk trouble with the medical board in their state. It's why you will see docs referred to here only as 'Dr A' or Dr X'.
If you really want to know who that doc is so you can consult with him/her, send a private message ('PM') through this system to the poster who mentions that doc. The system will then forward the message from you to the other poster, but conceals the real identity of both of you.
To send or read a message: The blue bar near the top of this webpage has a button called 'My MedHelp' -- click there, then you'll see a dropdown list. Click 'inbox', which will open a new page. There are three choices: inbox/ sent/ compose. That way you can read, write and send messages through this system to another poster, but still remain anonymous. That's how someone here would respond to a post from you seeking a doc in your stated area/state. (Took me a long time to figure that out!)
Oh, and one more thing I forgot to say: You might consider NOT telling your other docs you are looking for or seeing an LLMD. NonLLMDs consider LLMDs to be committing malpractice on a daily basis, and the nonLLMDs may simply refuse to see you for fear of being accused of condoning or collaborating in what they see as malpractice. It's ugly out there.
When I was newly diagnosed, I went to see my gyn for the usual annual appointment, and in the spirit of full disclosure told her I was being treated for Lyme, so that she had all the current data on me. I was like a little kid, hanging my head and sort of apologizing for seeing an LLMD, knowing how vicious the split in the medical community is ... but the doc surprised me and said she was very glad I told her, because Lyme is a serious thing etc. Whew!
Lyme seems to affect many bodily systems in some way or another, so tell those who have a need to know in your overall medical care, and if they balk, that's their problem. There are lots of fish in the sea.
Sometimes an LLMD knows who in other medical specialties is understanding of Lyme, if you have need to see a specialist for a nonLyme condition. Because of rejection of the whole Lyme concept by other docs, it becomes natural to want to rely only on the LLMD, but they generally don't have the time or expertise in other fields, being swamped with Lyme patients. My LLMD was upfront at the first visit, and maybe it was even in the data page I filled out, that I understood that the LLMD would not act as my GP or other doc and I was obligated to have other MDs for nonLyme stuff.
Life through the looking glass. But it's very doable. I'm proof!
Oops just re-read what I wrote about telling nonLyme docs you are seeing an LLMD. Let me clarify:
I avoided just casual mentions to other docs about having Lyme, but they need to know if you are on antibiotics or whatever. It's a fine line. If I messed up my ankle, for example, I probably wouldn't mention Lyme, but if the doc asked what medications I was on, I would name them but not necessarily say why I was on them. A little discretion is in order, but not to the point of foolishness.
I know over 10 years ago I went to a meeting on someone who was an LLMD and many people were standing outside causing a big problems so I completely understand what you are saying ... my lips are sealed. :)
Also, would it be a bad thing to post a new post asking for those in my area for LLMD suggestions? I want to find one ASAP.
Also do you know anything about LD cysts? I am asking because I had a cervical mri 2 months ago and in a smaller area of the mri it had a smaller but larger area covered (from the shoulders up) right below it showed part of my shoulder and a white area? The neuro didn't say anything about it ... I am assuming it figured it was someone else's problem to deal with. I was curious if this could be a ld cyst? Any thoughts on that ... lol.
By all means, do post here to find an LLMD -- with a phrase that will catch the eye of someone just scanning: "Need LLMD in [Baltimore] area" and ask them to "PM" [private message] you through this site with any suggestions. That way names are kept out of the public eye.
About cysts, I don't know ... and am actually not clear on where the biofilms are or are attached and whether they are visible on an MRI. I would be guessing they are not visible, but it's just a guess. An MRI is more to gauge brain function.
Generally speaking, MRIs are not useful in diagnosing Lyme, as far as I know. Brain involvement tends to get neurologists slightly interested, but head MRIs are not, to my understanding, diagnostic of Lyme any more than any other bacterial infection would be. Swelling and inflammation are more the hallmarks of Lyme rather than tumors, and a SPECT scan does that whereas an MRI does not, so I read.
NonLLMDs often run patients through a bunch of diagnostic stuff that doesn't focus on Lyme, but instead is looking for other things. The one brain scan an LLMD may do is called a SPECT scan, which shows impaired blood flow through the brain due to inflammation -- and inflammation is a hallmark of Lyme throughout the body. Wikipedia usually has a good write up on topics like SPECT.
To my understanding, a SPECT scan is not necessary to achieve a diagnosis of Lyme, and tho I had one, I didn't have the awareness or ability to think straight that would have caused me to ask the doc if the SPECT scan is important to diagnosis. Sometimes docs do tests etc. that seem promising in the scientific way, but are later determined not to be particularly useful, esp. in a fast-changing field like Lyme. Do ask any questions like that, because it costs you and/or your insurance company money, and if the doc can defend the necessity or advisability of the test, then it's probably worth doing if within your budget. I was too fried to even consider asking.
A browse through Burrascano's treatment guidelines on the ILADS site is worth doing, just to start getting a feel for the topic. Don't stress over it, tho -- your brain is on overload already, but it WILL get better.
From my own personal info only, I had cysts/lesions in my brain, on my spleen and esophagus (which they thought was an ulcer) and all over my chest and stomach areas. My LLMD said these are Bartonella lesions. Nothing will make them go away. Biopsy just reveals inflamation.
Very frustrating. If you seen an LLMD, make sure you get the co-infection tests.
So sorry for the delay, computer restarted and I lost the website ... teehee. :)
Thank you again for all the info. I know I received several lists of local LLMDs I just wish they took insurance many do not. One does but it always make you nervous if they will treat it appropriately and if they have the knowledge to the extent of the non-ins LLMDs. It's a double edge sword.
I am so hoping this is what has kept me home bound for so many years ... I would love to feel normal again.
Forget if I said this above ... you could check with your insurance before you book the appointment to see if they will reimburse a portion of the cost. I don't know if HMO-type plans do that, but the 'network' type insurance like Blue Cross usually do. Might save you a few bucks.
Thanks for the clarification on the different criterias that was very helpful. From your info and from around the web, it's a given, I have Lyme's and it has been long standing and currently active. It was 23 IGG and 39 IGM. Yippee for me.
I will def get co-infections panel and neurotoxin test, coagulation defect especially knowing I have factor v leiden mutation put me at a much higher risk.
Hopefully this will all be addressed at my next appt (end of the month).
I thought if you have a cyst it should be removed because they are like little factories for the illness??? Am I wrong?
Thank you for your insight. I will def test for the coinfections.
Did your cysts show up on an mri? Just curious ... I am probably going to approach my doc about my mri that showed the white mass.
I looked up the bartonella and some of the skin lesions look likes what I have between my toes currently...I was prescribed bactrim for this but I have been feeling very nauseated and having back pain.
Good! It's always helpful to have a doc who knows you already.
If the doc is not familiar with the IGeneX testing, you might tell her you've been reading up on things, and the PCR test from IGeneX seems to be used to get a different read from the Western blot and ELISA tests. IGeneX has a website she can go to at www igenex [dot] com.
A few years ago, some docs who thought the old W.blot/ELISA tests were just fine were badmouthing IGeneX, but I've not read anything like that that held up. Just a thought. Keep us posted!
Yes, the cysts showed up on my brain MRI that is why I was misdiagnosed with MS. The ones all over my breast and chest they don't take off. They actually took one off before I saw my LLMD and it caused more to come out.
The biopsy comes back after biopsy as "inflammation" every cream we have tried doesn't work. The Chinese herb, works the best.
You can get those outer lesions any where so between shoes don't surprise me.
Keep us updated. Let us know if you have other questions.
I've heard of iGenex but they don't work w/ insurance which means depending on what test I have done could be 1200+ out of pocket. I know some say they can be reimbursed from the insurance company but we will see.
I am hoping my neauro request the coinfections tests (if not I am going to request it). Beacuse I know he did not order the elisa (which was negative every time I ever had it) and he went straight to the western blot ... first doc to ever do that in over 10 years. I heard the elisa test is a false negative 30% of the time that is huge!
I am assuming I may have the bartello coinfection due to the cysts unless it is due to lyme ... I thought you can get them from lyme as well. Is there other coinfections that can cause it? I'm curious.
The funny thing is years ago when I had my gall bladder removed there was a cyst just above my shoulder and they removed it ... now in the mri it shows the white spot below the shoulder bone from the side it was removed from. I didn't think about that until you said they come back. I'm going to have to pull my med records and see if it said anything pertaining to infection, etc. Interesting!
It all gets very complicated very fast, doesn't it -- the different infections and tests, the different treatment, and everyone's symptoms being a bit different from everyone else's.
There is no one set approach to treating Lyme and each of the co-infections. The first step is figuring out what you have, and then the doc can structure the treatment to attack the infections in the most efficient order. Which tests are given depend on your symptoms and your history ... it's all so very individual.
I went to a very straightforward diet of vegetables and protein, along with grains like rice and quinoa, along with only a little fruit, to keep the level of sugar I was feeding the bacteria at a minimum. I got a bad systemic yeast infection from the particular probiotics I was taking, and had to stop feeding the yeast with sugar (from fruit etc.) and absolutely no junk food. Sounds boring, but it was better than being sickly all the time.
Do talk with your doc about what vitamins and supplements you take ... some are very useful and others are not .... tho some docs are just not interested in vits and supps, tho. Magnesium is the one that made the biggest difference, because it affects so many different bodily systems, and because the American diet overall doesn't include much magnesium, and because the Lyme bacteria use up magnesium in the body: a triple whammy. I still take magnesium supplements, any kind ending in "-ate", such as magnesium malate, orotate, aspartate, and/or citrate.
As Mojo says, talk with your doc ... make a list of what vits and supps you propose to take, and walk through it with the doc for suggestions and comments so you are on the same page. I think of vits and supps as medicine you just don't need a prescription for ... but just as significant. You'll also need to be sure that what you are taking all at once doesn't conflict ... I have read that taking Vit D and magnesium at the same time doesn't work, because the Vit D blocks the body's ability to absorb the magnesium, so I take most of my vits and supps all at the same time (each morning and evening), but take the Vit D or magnesium an hour after all the other vits and supps to avoid the conflict.
Sounds complicated, but once you have list and a routine set up, it's pretty easy. Sorry not to have more specific answers, but everyone is different, and docs are all different ... and some don't even want to talk about vits and supps. I hope your doc is more interested, but if not, then you have to figure it out on your own, since Lyme takes such a toll on the body. I just kept reading till I figured out what might work, and then kept tweaking the mix till it seemed to work.
If it helps, people here can give their thoughts on what works for them in that regard. You might post a question like 'What vitamins and supplements do (or did) you take while being treated for Lyme?' and see what people say.
I know how confusing all of this was for me ... and at a time when I was to brain-fogged to figure out which end of a toothbrush to use sometimes. Okay, maybe not THAT bad off, but pretty close!
I think you're doing a good job working through your situation about what to do and not do, and that's a really good thing, and also a good sign that you are focussed on getting done the job of getting well!
Let us know what the doc recommends, and we can pile on then. Take care -- you're doing fine!
Get the book, The Lyme Disease Solution, by "The Lyme Doctor", Ken Singleton, in Towson, MD. Excellent book by a doctor who had Lyme Disease for years before being properly diagnosed. He discusses testing, diagnosis, diet, supplements, treatment, lifestyle changes, etc. Excellent resource.
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