Help, should I pursue Lyme or other tick borne diseases with these symptoms?
Hi everyone! I hope I can get some help. I was wondering if anyone else has had these same symptoms and been diagnosed with a tick borne disease as being the cause.
This summer I spent a lot more time outside than usual. I live in Kansas in the country and this summer I got bitten by countless ticks and several of which I found days later on me. Even my dog was diagnosed with something called Ehrlichiosis from a tick bite. But to my understanding that disease is more acute and short term. But anyway I felt great during the summer then all of a sudden in September I started to feel weird and developed the following:
- Extreme mental cloudiness. I feel like my IQ, my mental clarity, and function is severely limited by something. I feel as if something is keeping me from thinking clearly. Its hard to explain but bothersome since I feel so out of it and disconnected from my surroundings. I feel like you might feel after drinking but ALL the time.
Surprisingly the mental symptoms are the most pronounced and bothersome especially the mental cloudiness. I was wondering if anyone else has found this as being a symptom of lyme or another tick borne disease? I was tested negative for lymes on a standard western blot but had one reactive 41 igg band.
I've ordered the test kit from IGeneX should I pursue this any further or does this not sound like a tick borne disease?
Thank you so much for helping :). I just wanna feel better :(
Welcome to MedHelp Lyme -- it sounds like you've got a handle on things already -- good for you!
I would indeed do what you are doing -- the trick will be finding a doc to treat whatever it is that IGeneX figures out, but that's for later, after the test results are back.
The trick about IGeneX is knowing what to get tested for, because the tick carry several diseases that all need separate testing and often separate treatment, such as babesia, bartonella, and (as you already have encountered) Ehrlichiosis. And the tests get expensive, so I would suggest if you can that you find a Lyme specialist to work with you so all the appropriate testing is done and things that seem unlikely are skipped. Lyme and its co-infections are not a do-it-yourself endeavor.
If you need help finding a Lyme specialist near you, let us know where you live in general or can get to (like Wichita, or KC, or whatever), and we might have some suggestions.
And the tests, even from IGeneX (which are the best in Lyme diagnosis) are not perfect and need interpretation in view of your symptoms and history, so you will definitely need an MD to guide your diagnosis and treatment -- just thinking ahead here so you can be scouting for LLMDs near you. (LLMD is a slang term patients use to mean a doc who understands Lyme more than the mainstream docs do ... LLMD is not a title or a degree, just short for 'Lyme-literate MD'.)
I would definitely pursue testing. Your history of tick bites, your symptoms, and the seasonal timing all fit with Lyme, so I would do what you are doing. And when you find an LLMD, tell him about the Ehrlichiosis diagnosis ... I've read that it needs to be treated, and why your doc didn't, I don't know. But I'm *not* medically trained ...
Your symptoms sound very much like Lyme, so I would do what you are doing: pursuing the possibility until it is ruled out or otherwise explained. Be sure to get your OWN set of copies of ALL medical and blood tests etc. every time you have something done or see a doc and keep your own set in a binder or folder. It seems geeky to drag a binder of old tests to a doc's office, but esp a new doc (an LLMD in particular) might find patterns and indications in those tests that other docs overlooked.
Side note: You might try magnesium (Mg) supplements for the twitching and aching ... Lyme uses up Mg and leaves one deficient, so the muscle fibers aren't firing properly ... like needing a new set of spark plugs in an old car. Any kind of Mg that ends in '-ate', like Mg malate, orotate, aspartate, or citrate. I'm told that the blend of Mg and calcium that 'Cal-Mag' is made of is not very good quality, tho I've not tried it. I have used Mg malate and also the others to good effect. Be sure to tell your doc you are supplementing (if you do) when you see him/her, and about your muscle twitches etc., so they get the unmedicated clinical picture.
Also if you're up for more reading, Burrascano's guidelines posted at ILADS [dot] org are interesting and can be useful for understanding what you're going through.
Let us know how we can help -- we've all felt like you are feeling now, with some variations on the theme, but you sound much like I felt. Take care, and keep us posted, okay? --
Hi, I agree with Jackie. Follow up with your thoughts to test for Lyme, it does sound like it could be lyme.
I have had all those symptoms. I had to skim Jackie's answer due to vision issues so excuse me if I am repeating something. I would definitely check for co-infections with IgeneX. I have 2 co-infections and they can bring a whole set of issues. Some co-infections require several tests to come back positive. A good LLMD will treat you based on symptoms.
As Jackie mentioned, read Burascano's Treatment Guidelines which lists symptoms of Lyme and co-infections.
I agree that it does sound like you have Lyme, including the slightly low body temperature.
You describe what sounds like brain fog. "Brain fog" sounds slightly humorous, like what a college student would describe after a late night study session and the need for strong coffee. But with Lyme Disease, it is so much more than that, and certainly not funny or trivial to the person suffering with it. It can be difficult to concentrate, absorb new information, and make good decisions. Doctors might dismiss this as mild, but to the student whose grades are plummeting or the worker whose job performance is suffering, it can be very serious.
I have neuro Lyme (no arthritis, not even any muscle or joint pain) and my Western Blot results were completely CDC negative with only a positive on Band 41. However, since I did that test at IGeneX, it showed other bands the CDC ignores. Two of those were highly indicative of Lyme, and so IGeneX told me it was positive, which was a relief for me as I had dozens of aerious symptoms. I had previously tested negative on a blood screening test and a CSF test at a military lab.
I believe that people outside of New England who present with symptoms different than the headache and sore knees the New England researchers expect are more likely to test so-called "negative." The test interpretation is quite unreliable everywhere, but it has never been validated outside of the New England area.
I think IgeneX testing is a good idea. You may also want an Ehrlichia test, given that your dog has had it. While usually the acute symptoms are really noticeable, you could still be carrying a low grade case of it.
You are smart to pursue this now. If you do have Lyme, it only gets harder to treat over time.
also, I think I omitted another place to find an LLMD:
ILADS (Intl Lyme and Associated Diseases Society) is the main voluntary group for LLMDs, and it will email you with LLMD names in your area, so I understand --
contact [at] ILADS [dot] org
Tell them where you are and how far you can travel. I haven't used that service myself, but I hear they do respond. Doesn't mean the docs on their membership roster have passed a test or anything, because it's a voluntary group, but it's a good place to start. If the first doc doesn't suit, then ask for another name. Lyme being on the frontiers of medicine, there are some cowboy docs out there. Just sayin'.
And you'll hear lots of trash talk from nonLLMDs about ILADS and LLMDs generally. It's just where things are right now.
Take care, keep us posted on how you are doing, okay?
Thank you for your reply i'll definitely go through with the IGeneX testing maybe I'll end up with the same results you got. Sadly I'm almost hoping they find something because I'm so sick of doctors telling me I'm perfectly healthy and everything's fine when I absolutely don't feel that way :(.
Thanks again its encouraging to know that lyme can manifest itself in other ways than just primarily muscle and joint pain. Though I haven't been experiencing low body temperature I'm experiencing slightly elevated temperature. Though maybe its just normal
Thank you for your reply and all the information :D. I'll definitely look for a LLMD and can make it to Kansas City for sure, I live near there. I have a couple more questions hoping someone can answer them.
First I've done my research on IGeneX labs and from what I can tell they seem pretty cutting edge and reliable but I know they test for more bands and most of which the CDC doesn't take into account. I was wondering why does the CDC discount these bands and do they do so for a good reason? I mean if I do come back positive from the IGeneX tests I want to be sure I'm not just getting a false positive and starting a year of antibiotics for no reason. My doctor is also open to using their lab but he said before he prescribes anything he would have to first see the results and look into the lab.
I'm guessing IGeneX has done a lot of research on why those extra bands indicate Lyme I just am surprised the CDC disagrees.
Anyway thank you all for your help :D. I hope I can get to the bottom of all this and get to feeling better :/.
Ricobord has a good explanation of the history of why the CDC only looks at certain bands -- my general understanding is that some years ago, there was research done to make a vaccine against Lyme, just like vaccines against smallpox and polio and other diseases that no longer afflict most of the world. Research trials were done on the Lyme vaccine (called Lymerix) but the vaccine backfired, causing more problems than anticipated, so it was withdrawn from the market. However, if I understand correctly, people who had gotten the vaccine now tested positive for Lyme because the killed bacteria used to make the vaccine cause diagnostic tests for Lyme to show 'positive' even though the person was not actually infected with live Lyme.
Result: the bands from the vaccine that were giving false positives on Lyme tests were simply eliminated from the test, with the result that you can test positive on those bands because you are infected with Lyme -- but the CDC and mainstream labs simply ignore the bands. (Somebody correct my explanation if it's wrong.)
Problem: those now-missing data points could be useful as part of the whole picture including other bands -- Lyme tests are not like pregnancy tests where the little stick indicator is either "+" or "-": Lyme is a tricky beast and it takes a bunch of indicators (like rash, tick seen, various bands), considered together with the patient's history and symptoms, to make a probably diagnosis. Therefore eliminating the bands that could be positive because of the vaccine removed some important indicators for docs to look at in assessing the whole fuzzy picture of Lyme **in people who never had the vaccine**.
And because the CDC said to eliminate the now-discredited bands, the tests are incomplete, when the missing bands could be useful. The Lyme vaccine has not been given more at least 10 years, I think, so why not add the bands back to the lab tests? Dunno. CDC is stubborn. It seems to me (but I'm not medically trained) that asking people if they ever had the Lyme vaccine would be a good way to determine whether those bands are valid in that person's test.
Note that the 'bands' aspect exists only in the standard, two-step ELISA/Western blot test, which most docs use: ELISA and W.blot look for your immune system's reaction to Lyme, not for direct evidence of Lyme bacteria. ELISA and W.blot are still the first (and often only) testing done by nonLLMDs, despite the fact that these tests have the missing bands due to the vaccine foul up.
And even worse, ELISA and W.blot do not take into account that the human immune system is set up to wipe out bacterial invaders fast -- generally within a few weeks. Measles, mumps, chicken pox, all of them (in unvaccinated people) last a couple of weeks at most, and then are gone. This timing occurs because bacteria are most susceptible both to antibiotics and to the immune system when the bacteria are dividing and their cell wall is disrupted -- just like you are more susceptible to getting your car jacked when you have the garage door open and the engine running. The human immune system is attuned to the reproductive cycle time of these common bacterial infections that have been around for millenia, and medicine has figured out how to make antibiotics that hammer the bacteria in that same reproductive time cycle, beating on the bugs for a couple of weeks just as the immune system tries to do.
There are a few exceptions to this routine: tuberculosis is one of them. It has a very slow reproductive cycle, as does Hansen's disease aka leprosy. Those bacteria are treated with antibiotics for upwards of 18 MONTHS, not the two weeks you get for strep throat. It appears that Lyme is more like TB in this regard, but the medical 'mainstream' hasn't accepted that yet.
Another trick Lyme has is the ability to encyst itself into hidden areas in the body, like cartilage, where there is low blood flow and fewer opportunities for the immune system to reach those areas and kill the Lyme bacteria. These slimy shields made by Lyme are sometimes called 'biofilms.' Part of Lyme treatment by an LLMD is to use two antibiotics at the same time: one to pierce the biofilm, and another to kill the bacteria. NonLLMDs don't do this, and the standard CDC/mainstream medicine approach to treating Lyme is (1) doxycycline only, which does not breach the biofilm; and (2) treatment for only a couple of weeks, not for months.
Okay, now that you've been bored into submission, here's another warning note: your doc sounds open-minded, and that's good, but be braced for him to do a little research online about IGeneX where he will probably find a LOT of trash talk by CDC-oriented docs who say that IGeneX is a bunch of quacks and that the ELISA/W.blot tests are just fine. Full stop.
Be prepared for your doc to say no to extended antibiotic treatment and to refuse to participate in such treatment. Oh, and he may not even test for co-infections (babesia, bartonella, etc), which an LLMD is primed to look for -- co-infections are carried by the Lyme ticks about half the time. (I'd take those odds in Vegas.) Mainstream, nonLLMDs just don't think about this stuff.
So there's the data dump. Others will add their thoughts, and feel free to ask questions and critique the comments. Our minds are more open than the CDC's. Heh.
If your doc is willing to look at the ILADS [dot] org website, including esp. Burrascano's treatment guidelines, it will give him a fuller picture of the thinking that LLMDs do.
If you need to find a new doc, besides the "contact [at] ILADS [dot] org" link I think I mentioned before, just google/search -- kansas lyme -- I just did and found a ton of stuff, including as the first hit the Lyme Association of Greater Kansas City! Groups like that vary in quality, but the good ones are a wonderful resource for local docs who are Lyme-aware and more ILADS-like in their thinking.
Hope you don't have Lyme, but if you do, go after it with intent to obliterate.
Keep us posted on how it goes and what you do -- we're rooting for you!
PS You might want to watch the documentary 'Under Our Skin', about real people with Lyme. I thought the movie was over the top, making it look like everybody with Lyme was permanently damaged, so take it with a grain of salt. I think I heard that there has been an addendum added showing how the people in the film are doing after treatment, but not sure.
(I saw it in previews a couple a of years ago. After the showing, a couple of people went up on stage to talk about their experiences with Lyme, and it was only after a while that I gradually figured out that these healthy, alert people (about your age) up on stage were actually the messed up, scrawny wrecks IN THE MOVIE -- after treatment!)
and PPS ... I just reread my comments, and want to say:
Don't be afraid that you will get worse than you are now --- the wrecks in 'Under Our Skin' are exceptional cases who make for good documentary footage, but most of us plateau pretty early, I think, and tend not to decline further. So whatever symptoms you have now are not likely to get worse, just based on my nonscientific survey of people posting here.
Thank you so much for taking the time to share all that info that makes sense. Though they should bring those excluded bands back into the standard test as myself and I'm sure the majority of the population have never had a Lyme vaccine, weird that they haven't yet :/ guess its kinda a low priority disease maybe. Sure doesn't seem like it though.
Anyway thank you all for your help you've all been more than helpful!! I'm scheduled to see my doctor next week and I'm gonna bring the test kit and get the blood drawn and get it shipped to IGeneX.
I'd be almost relieved if its Lyme since i've been battling this so long I'm sick of hitting dead ends and being turned away with a clean bill of health when I feel so rotten :(.
You're very welcome. I just scanned my previous posts to you, and I think I got sidetracked before I tossed in this important data:
While the ELISA/W.blot tests look for indirect evidence of Lyme (that is, the immune system's reaction to Lyme bacteria), the IGeneX tests look for direct evidence of infection: DNA of the Lyme bacteria. That's why IGeneX is such an important aspect of diagnosis.
The docs who are still high up in the infectious disease medical community don't believe in IGeneX's test methods, not for any scientific basis I've been able to find, but just because the nonLLMDs are totally comfy with the ELISA/W.blot tests and see no reason to go beyond them. Case closed.
So be gentle with your doc, don't expect him to buy into the LLMD approach, because going against the powerful docs in the local medical community (most of whom will line up with the not-LLMD views) is dangerous to one's medical license in many states. There are some states that have laws stating that a doc can practice according to his/her conscience, but states without that protection can bring a straying doc up for charges of malpractice and get the doc's medical license revoked.
That's why there are few-to-no LLMDs in the entire state of Texas. California, where I am, has legal protections for docs to allow them to practice according to their consciences, but it still gets nasty sometimes. It takes guts to go up against the orthodox medical community, and some docs either can't or won't try.
If your doc starts holding back, take it as a sign that he's nervous and doesn't want to do wrong toward you, and take your test results and find an LLMD. I went through 20+ docs before one tested me for Lyme; the test came back positive, but the doc (not a Lyme believer) said I couldn't possibly have Lyme. Duh? I took the test results and found an LLMD, and all is well.
Sorry...I misread your temp as low, not low fever. Part of what is so tricky about Lyme is that symptoms can very so much. While many people who've had Lyme for a while. They have a slightly below normal temperature. But then others run a chronic low grade fever, like you. (My PA said that is often a sign of Babesia as a coinfection. I contradict that trend by running slightly below normal but with Babesia). Some others have recurring fevers.
There are very few absolutes about Lyme. It is about the whole constellation of symptoms, and also of eliminating other possibilities.
Regarding testing at IGeneX, they do indeed do a PCR test, looking for the bacteria itself. It is especially helpful in a urine test after a short run of antibiotics. But this test is more likely to be false negative than the IGeneX Western Blot. I don't think it's possible to be false positive on a PCR, as it finds bits of Borrelia DNA. It can only find something that's actually there. So if it's positive, it is definitive. (The "Lyme deniers" dismiss the test as "unreliable" even though the CDC allows it.).
I did the blood PCR test and was negative. But I was IGeneX positive on their WB. I had bands 18, 31 & 41 on the IgM portion. 31 is one of the two bands used for the failed vaccine. Alan Steere, the original doctor to write about "Lyme Arthritis" and consulting expert on the failed vaccine, justifies ignoring Band 31 by saying it is just a part of transmission of Lyme, not a sign of infection (and that a virus or two can also trigger that band). Of course this makes no actual sense.
Band 18 is one of the qualifying bands on the CDC's IgG criteria that is ignored in the IgM. But all IgG antibodies were first IgM antibodies, so ignoring them on the IgM doesn't make any sense.
Steere says ignoring the Lyme specific antibodies on the IgM doesn't matter as the other expected antibodies will show up. He never seemd to notice that this just doesn't happen in everybody's immune systems. He used a complex statistical analysis to come up with the criteria, so other "evidence based" scientists just accepted it. Very few people actually understand it and most just blindly accept the claims of a high accuracy rate by the "experts" at the research universities and the CDC. In my opinion, it would never stand up in a court of law. Most of it is based on assumptions that have been shown to be wrong.
The test criteria was originally commissioned by the CDC just for surveillance purposes. It was designed for minimal false positives, without concern for false negatives. It was controversial and widely protested when it was adopted as the diagnostic absolute. The CDC has ignored all complaints about it in the 15 years since.
I have yet to learn of someone who tested false positive at IGeneX, but I have heard of several who were false negative there. Some people just aren't producing enough antibodies to show up on any test, no matter how sensitive. These folks tend to be the sickest or to have had Lyme for over a year. That's why the diagnosis should be a clinical one, based on multiple factors, including history, symptoms, and tests. Unfortunately, only Lyme aware docs know how to do that.
This article offers a fairly thorough explanation of Lyme testing.
You can also google "Tom Grier Lyme" to read a couple of his articles on testing. He is a scientist who understands it and explains it in laymen's terms for the rest of us.
I hope if you do have Lyme, your test comes back positive!
... but if your test comes back negative, that doesn't mean you don't have Lyme .... and we'll cross that bridge if it comes to that.
Be sure to get hard copy results of all tests for your own files (and to show any future docs). Just in case. More than any other illness, Lyme and its co-infections require a significant amount of case management by the patient, but it's well worthwhile.
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