Welcome -- sorry you have reason to be here, but glad you are continuing to 'work the problem' -- meaning to figure it out and what to do to fix it.
No one here is medically trained, but we are glad to relate what we have learned personally from our own experiences. One important thing to keep in mind is that Lyme is very tricky and shows up differently in each person, due to variability in immune system function from person to person and due to other infections that the same ticks often carry (maybe half the time) that have their own sets of symptoms -- so keep an open mind and don't try to line up your own symptoms exactly to anyone else's, but keep an eye on the bigger picture -- which it sounds like you already are.
First note -- the cottage cheese effect sounds like a yeast infection, meaning a fungal infection. Some people are genetically susceptible to yeast, and also Lyme interferes with normal body 'settings' like pH, which can make it easier to get something like a yeast infection. Did your doc give you anything like Diflucan/fluconazole or advise you on limiting sugar in your diet? There are also some diet supplements supposed to be good for you that are yeast-based, and in some people these can take over and cause the symptoms you are having; Florastor/S.boulardii can have that effect in some people (happened to me, gave me brain fog, red eyes, bloating, just felt lousy all the time.)
Docs (and everybody else for that matter) tend to think of a fungal infection as being limited like athlete's foot, and seldom think of it as being able to take over the entire digestive system. It can happen to babies (where it's called thrush) and also to children and adults, as mentioned above. So you might want to run that one by your doc -- for some reason doc's just aren't tuned in to that and even they think only women get yeast infections and only v*ginally, but not so. (Also, if you are susceptible to yeast, it's possible you could have gotten from intimate contact.) Okay, enough on yeast, but do look into it, because a systemic yeast infection lines up pretty well with a lot of your symptoms. And if you do have yeast AND something else, getting the yeast out of the picture will make it easier to treat whatever else is ailing you.
You definitely live in Lyme country ... woodsy areas like NC and Scarsdale are ground zero for Lyme, and even docs recognize that (those of us who live in other parts of the country [like Texas especially] are told 'we don't have Lyme here' and end of conversation.) Don't worry about not keeping the tick ... the tiny ones are classic Lyme-carriers, but dog ticks also can bring infections. Many (maybe half) of Lyme patients never see the tick that bit them and never get the classic round red 'bullseye' rash. And many docs don't take ticks or symptoms seriously, so don't fret over losing the tick. And, it could be that you were infected a long time ago (considering how long you've been sick) and that was a new tick that may or may not have re-infected you with Lyme and/or other co-infections.
Bottom line: the facts are always murky when it comes to Lyme+ infection ("Lyme+" being my shorthand for Lyme and the other diseases [aka co-infections] that often come with Lyme). I never saw a tick, never had a rash, and neither did a family member here, but we both had serious cases of Lyme and a co-infection.
The common co-infections are babesiosis (related to malaria), bartonella, ehrlichiosis, and a few others, all of which have slightly different symptoms and need separate testing from Lyme. And ... the treatment for each may be different, because the bugs are not all susceptible to the same meds. Yeah, I know: why can't it be simpler?
The good news is that you are young and otherwise healthy, and that means your body is putting up a good fight. The first thing I would do is find a Lyme specialist -- which is not as easy as it ought to be, because there is a huge split in the medical community about how serious Lyme+ is, how to diagnose it, and how to treat it. The first docs to 'discover' Lyme about 30 years ago are still high up in the field and their initial impressions of Lyme as hard to get and easy to cure still hold sway in mainstream medicine. There is however an equally serious faction of docs who have continued to research Lyme+ and to understand better its mysteries, but there is much venom directed at the these more progressive thinkers by the original discoverers. These are the players:
IDSA is the Infectious Disease Society of America, and takes the narrow approach that Lyme is rare, hard to get, and easy to cure with a couple weeks of antibiotics. This view claims that it is 'mainstream', and indeed the most usual docs who would treat Lyme+ (that is, the infectious disease [ID] docs and neurologists) usually adhere tightly to the 'hard to get/easy to cure' view, and after a couple weeks of antibiotics, their position is that you're cured, and any remaining symptoms are 'post-Lyme syndrome', meaning that your body is over-reacting to a now-vanquished infection. These guys haven't progressed much at all in their thinking, and there is suspicion among some of us that the epidemic of Chronic Fatigue Syndrome and similar murky diagnoses is really just untreated Lyme.
On the other side of the aisle is ILADS, the International Lyme and Associated Disease Society. These are the progressive thinkers who are not locked into impressions from 30 years ago. Lyme is caused by a spirochete, a spiral-shaped bacterium, in the same family as the bug that causes syphilis. Lyme bacteria are adept at hiding in the body in places that the immune system can't locate them, meaning the bacteria can just hang on making mischief for a very long time. ILADS docs understand this and treat with a variety of antibiotics for an extended period of time, to blast through the slimy shields the bacteria hide in and to keep the level of medication high for a sufficiently long time to attack the bacteria when they are reproducing, which when their cell wall is disrupted is when they are most susceptible to being killed...and Lyme bacteria reproduce VERY slowly, like tuberculosis bacteria do, and standard treatment time for TD is 18 months.
Okay, running on too much here, but in your situation, I would find an LLMD and read up on Lyme:
-- Look for Burrascano's diagnostic and treatment guidelines at ILADS [dot] org, which will give you an LLMD's view of the approach
-- Read 'Under Our Skin' if you have the attention span; if not, watch the movie now available online (I think)
-- Find an LLMD. In your area, there are lots of good LLMDs, and Columbia U medical center in Manhattan has a Lyme research center headed by Brian Fallon. I don't know if they treat or just do research, but they may be able to refer you.
Let us know what you do and how you do, okay? Your spirit is strong, and you've got determination -- and THAT will carry the day. Take care --
-- for a referral, email
contact [at] ILADS [dot] org
and tell them your location. They can send you the names of LLMDs in your area. We do NOT post LLMD names in public, because of harassment by local and state medical boards.
And did I explain the term LLMD above? It's not a formal title, it's just patient slang for 'Lyme Literate MD', meaning a doc who thinks broader and more progressive thoughts about Lyme.
Lyme is a type of bacteria that you get from tick bite and enters your cerebral spinal fluid, over time.
in most cases it gives the "bull eye rash" on the skin.
obviously if someone had bacterial infection in their CSF they would get fatigue, paralysis, some brain symptoms. but also fever and a lot more.
Most likely you don't have a direct infection of CSF but there could be something going on with your immune system.
You could get what they call post-viral fatigue syndrome. or a post-viral autoimmune reaction that can go on for a long time. It appears that recently it's happening a lot lately. I read of many people who started to get sick in 2010 , including me actually.
if that was the case, there isn't really a cure that I am aware of. Doctors could try stuff like immune suppressants, corticosteroids, anti-inflammatory drugs on you. some (many actually) would come to the conclusion that is all in your head and give you psychotropic drugs.
about the redness in your eyes you should have eye examination, are your eyes able to tear normally? you should check that.
the specialist you could see is Rheumatologist. or Neurologist if you have marked muscular weakness that can be observed by the doctor, otherwise don't even bother going. or Immunologist maybe since you say you have allergies.
Hi, sorry you are here but we will help you along the way.
I never had the rash but my daughters remembered the tick bite of over 20 years ago. Don't be surprised if mainstream doctors perform Lyme tests and your results are negative. When you find an LLMD they will use a special lab called Igenex which should give you a true diagnoses. Many of us were misdiagnosed with various illnesses before finding a Lyme doc. I was told I had MS, Lupus and a variety of other diseases before seeing my LLMD.
Since you are younger then 25, there are Lyme foundations that offer young adults, grants if financial issues are a problem.
Keep us posted.
Comment on a comment above:
Until you are *certain* you do not have a bacterial infection (which Lyme is), corticosteroids are contraindicated, meaning do not take them. The reason is that steroids suppress the immune system, which is the exact opposite of what should be done in a bacterial infection like Lyme.
Welcome. Sorry to hear about your symptoms. It is frustrating to feel so crummy and not know why.
I'll just add a few thoughts to the helpful posts above.
It is an unfortunate belief that most Lyme patients get a rash. It is because a bulls eye rash is part of the CDC case reporting criteria and when states report their cases, the % with a rash varies from 50% to 80%. Unfortunately, they have communicated the 80% number.
Cases without a rash are more likely to be missed and to develop into disseminated Lyme, which is harder to diagnose and treat. These cases are much less likely to be counted as reportable cases, depending on which state they occur in. Yes, different states have different reporting criteria, which to me makes the whole case count meaningless. The CDC has stated the "real" number of cases is probably more like ten times the most recent reported number of 30,000.
Actual studies of real Lyme patients show that only about half of them recall a rash, and only about half of those look like a bulls eye.
Many doctors are terribly uninformed about Lyme and lots of misinformation and myths prevail, both official and unofficial. One myth is to run a Lyme antibody test when someone finds an embedded tick or rash. The 'official' information on this is correct in saying that this is a waste of testing. Enough antibodies don't show up for the test until about a month after the bite. Obviously the doctor you saw didn't know this. Your negative Lyme test result is meaningless.
An 'official' statement that is actually a myth is that later in the disease, the tests are extremely accurate when negative, and only sorta accurate when positive. The CDC Lyme testing protocol was originally designed for following trends of a specific definition of the disease and to avoid false positives. While false positives are possible, they are rare. I don't know where the assumption to be suspicious of positives came from.
That this criteria became a diagnostic absolute has been a disaster for Lyme patients, as the tests leave a lot of false negatives out in the cold. Somewhere between 30-50% of people who have Lyme test false negative, and it can happen early, or it can happen later. (The CDC even KNOWS that people can test false negative and it doesn't tell doctors about this!)
You definitely need to get checked out by an LLMD as soon as possible. An LLMD will likely order tests for you from IgeneX, a specialty lab. Your symptoms are vague and while they are on the list for Lyme, it could also be something else. A good, experienced LLMD will know what to look for and will not dismiss Lyme easily. As my doctor's PA told me, not everyone they see has Lyme, as the disease mimics so many other diseases. (My doc also treats CFS and autistic patients. They have similar issues to chronic Lyme patients and can improve with the right diet, supplements, and meds to help symptoms. He saves the abx for the known infections.)
I also had GI issues with my Lyme. There is a coinfection called Bartonella that can make the neuro and GI symptoms of Lyme worse. My GI tract was even more messed up than I thought it was, according to the GI analysis test I had done just before I was diagnosed. Opportunistic bugs can wreak havoc when Lyme is suppressing your immune system. I have been treated for h.pylori, campylobacter, parasites, and yeast. I have taken a variety of supplements to help my gut to heal as I go through my antibiotic treatment. You might take a look at an article called "Bell's Palsy of the Gut" to see if you can relate to the description. Even Lyme by itself can cause GI problems from one end to the other.
Keep us posted!
Before I knew I had Bartonella, I had an endoscopy done and was told I had an ulcer. It was not h-pylori. They gave me the picture of it.
Later when I knew I had Bart's, I noticed that the "ulcer" looked exactly like my Bart's lesions that are on my body. My LLMD confirmed that it was. Unfortunately the lesions can appear anywhere, they are inside my ears, brain, mouth, and private parts. With treatment, some of them have gone away, I hope they will all go in the future.
I just searched on google for:
and clicked the link to 'images' on the left side of the screen, which brought up a couple dozen photos of various manifestations of Bartonella. These tend to be the worst types of lesions, so don't anyone be scared by it, but it does show the wide variety of presentations Bart can give.
Also in those photos is one of a Lyme tick next to a fingernail, and shows how truly tiny the little beggars are.
and another PS ... I would disagree with a couple of things said above, tho everyone is entitled to their opinion, since Lyme is a still-developing area of medicine:
"Lyme is a type of bacteria that you get from tick bite and enters your cerebral spinal fluid, over time." -- NonLLMDs often want to do a spinal tap, but Lyme bacteria OFTEN do not appear in spinal fluid. I would personally find another doc, unless the doc could explain convincingly that there was another reason (other than ruling out Lyme) to do a spinal tap. It's like looking for your socks in the refrigerator -- they might end up there, but not likely.
"in most cases it gives the 'bull eye rash' on the skin." -- Not so. Only sometimes, as Ricobord says above. I never saw a tick or a rash but was truly ill with Lyme and a co-infection.
"You could get what they call post-viral fatigue syndrome. or a post-viral autoimmune reaction that can go on for a long time. It appears that recently it's happening a lot lately." Maybe. But the real problem we patients encounter is that nonLLMDs are very inclined to diagnosis ANYthing BUT Lyme, simply because the 'standard' (outmoded) approach to Lyme is that it is very rare and very hard to get. Not so.
"Doctors could try stuff like immune suppressants, corticosteroids, anti-inflammatory drugs on you." Any doc who wants to treat you with steroids before you are certain you do not have Lyme is one I would avoid. If an LLMD runs the appropriate tests and concludes I do not have Lyme, then maybe I'd do steroids, but not until I was darned sure I didn't have Lyme+. Steroids suppress the immune system, which just lets a bacterial infection like Lyme run wild.
"the specialist you could see is Rheumatologist. or Neurologist." Disagree. Infectious disease docs, neurologists and rheumatologists are not taught to look for Lyme or believe that it as widespread as it is. I would find a Lyme specialist (LLMD), who can be of any discipline within medicine, but has the point of view that takes Lyme seriously. I know, it's tricky, but digging around on the internet can usually find you an LLMD, including seeking a referral from ILADS as mentioned above at
contact [at] ILADS [dot] org
or trying Columbia's Lyme research center for a referral. Take care! It seems horribly confusing, I know, but don't give up --
he refers he developed, along with other symptoms, "brain symptoms" all of a sudden after being sick with what looked like a flu. in 2010.
2 years later his symptoms have gotten a little worse, his cognitive symptoms seem to be unchanged.
how do you fit Borrelia in this? when did the tick that he doesn't remember biting him actually bit him? in 2010? years before?
how do you have symptoms like muscular weakness and cognitive impairment from a bacterial infection of the CSF without any significant pain or fever?
where can you usually find ticks infested with Borrelia?
As with many MDs, you seem to assume a static situation after infection: one stays in steady state with symptoms, no other (possibly) later infections are present, the immune system does not begin to fade in its reaction.
One often does not know when the tick(s) bit -- my family and I never saw any ticks or any bites or rashes, but we had Lyme and a co-infection.
Given the spread of Lyme and its carriers, re-infection cannot be ruled out and indeed should not be. A stressed immune system that is then required to deal with another infection (whether of the same disease or another) can falter, producing a worsening of symptoms.
Symptoms are different in each person, depending on the (co)infections present and any succeeding (re)infections. On what basis do you hold the view that no significant pain or fever rules out a diagnosis of Lyme and/or co-infections?
Why do you insist that Lyme is an infection of the CSF? Lyme bacteria are often not readily seen in the spinal fluid -- it is not their favored place to sequester.
"Where can you usually find ticks infested with Borrelia?" Everywhere.
I really appreciate the support that you all are giving me, thank you for the helpful advice. I am contacting LLMD's right now to set up appointments and emailing ILADS. I will keep you guys updated with what happens, its amazing to be on a forums list that legitimately cares about peoples health. Thanks again!
how can Lyme give neurological symptoms if there is no direct infection of the Central Nervous system? actually it should also be detectable on a MRI.
I'm not an expert but I don't really believe that Borrelia-infested ticks are everywhere...
getting tested for Lyme won't harm, but tests aren't conclusive, they are indirect, detecting some types of antibodies sometimes associated with Borrelia, but also with other types of harmless bacteria. it's not so simple.
at the end of the day you'll know for sure you had Lyme when the antibiotic treatment is effectively working.
he should also do a full autoimmune work up, all the basic tests, ANA and Rheumatoid Factor. Complements system. etc. with a Neurologist or Rheumatologist.
also check liver function and Serum protein electrophoresis, that too can give indication of a inflammatory process.
Sorry to disagree with you, because you are certainly entitled to your own views. I respond here only for the benefit of others who are trying to figure out how to manage their own situations with Lyme or not-Lyme, and they can have the benefit of your comments and of mine, and then decide for themselves.
MRI (magnetic resonance imagine) is NOT particularly useful in diagnosing or ruling out Lyme disease, because it will show positive results not only for Lyme but for other conditions such as MS (multiple sclerosis).
SPECT scan is a different kind of brain scan which shows areas of low blood flow in the brain, due to swelling. This is the test preferred by LLMDs.
Lyme bacteria hide in biofilms and in joint tissue (cartilage), because those are areas of low blood flow where the immune system does not circulate as readily. Earlier work in Lyme disease looked toward the older method of MRI, but more recent research shows SPECT scans to be more useful because they show evidence Lyme and not also other infections (as an MRI does).
As to direct vs indirect testing for Lyme: the standard Western blot and ELISA tests do look for the immune system's reaction to Lyme bacteria, but the problem is that Lyme is not killed quickly by the immune system, and it can and does persist although the immune system is not reacting to it after a short while. A test (like Western blot/ELISA) that measures only immune system reaction will indicate 'no Lyme' when what it truly is indicating is 'no antibodies to Lyme' -- these are two very different things. In contrast, IGeneX Labs in Palo Alto CA has developed a 'PCR' test which looks not for the immune system reaction to Lyme bacteria, but looks for direct evidence of Lyme DNA in the blood stream. I think you and I are agreeing that the standard tests are indirect and inconclusive. All the more reason to see a MD who uses the IGeneX PCR testing.
(And note, another reason the Wblot/ELISA tests are not very accurate is that they exclude certain indicators that DO definitely show Lyme, due to historical reasons I won't bore you with here. The Wblot/ELISA tests could be more useful, but are not used that way, and in the meantime IGeneX PCR testing has come along.)
Sadly, neurologists and rheumatologists are often among the biggest 'Lyme deniers' -- their specialities hold to the old knowledge about Lyme, which is sadly outdated. An LLMD can be any kind of MD, but area seldom found among neuros and rheumies.
My own LLMD was an immunologist, and a free thinker to boot. That open-mindedness is what is needed: Lyme is an epidemic, whether one 'believes' in it or not.
you had Lyme and you are now cured?
Lyme and babesiosis. Yes, treated and cured.
Ricobord has done some excellent posts here recently on the history and complications of Lyme diagnosis, treatment and practice, if you are interested. You can search for Rico's posts in the 'search this community' box to the right side of the page.
Sounds like you have have been through the wringer. It is very frustrating being passed back and forwards between MD's and never really getting answers.
What an interesting thread. I just love reading through everyone's posts get encouraged and hopeful to coming out the other end of this insidious thing. Fantastic info again Jackie and Rico.
I found this all rather interesting because initially after having a complete immune crash (or so the Dr's like to put it) 12 years ago I have actually found myself on the Lyme path too. The Dr's back in 2000-2001 ended up labelling me as having Post-Viral-Fatigue-Syndrome (after testing positive for CMV, EBV, HHV6, Ross River Fever with a positive rheumatoid factor) but were also simultaneously on the hunt for the culprit/root cause of my hassles (even though I had been diagnose as Post Viral Fatigue Syndrome?????) So they tested for MS, lupus, thyroid Hashimotos, blah, blah, blah, blah. Had the whole hog - MRI's, EEG's, blood tests, urine tests, full body catscans, lumbar puncture, ultrasounds .....you name it I think I've had it. All of course except testing specifically to Lyme Disease, because on questioning the learned Md's "Lyme is not in Australia".
Well guess what, Lyme is in Australia, people are getting it and dying from it while bureaucrats are twiddling their thumbs actioning as little and as slowly as possible. Lyme is certainly not something to mess around with. I have already lost my gall bladder to it and would prefer not to lose anything else. Trust Rico and Jackie, contact ILAD's as recommended, find yourself a LLMD and get tested/treated.
Hope you find help, health and healing soon.
PS. Have just finished reading a very interesting article which I think relates well with this post:
Just one other quick thought. I am not sure but there may have been a bit of a miss communication earlier in this thread. I get the feeling that CFS and CSF may have been mixed up a little at some point causing some confusion??????? Or it could be just my 'brain fog'. Either way, I hope you all have a great day!
@Robyn the poster mentioned CFS but we were discussing Lyme and CSF cerebral-spinal fluid findings and infection.
@Jackie it's interesting that Lyme is such a big concern given that it's spread by ticks and not very many people are bit by ticks in their lifetime. I was bit by a tick maybe 13 years ago when I had a dog and I used to take him to the local park to the dogs playground area. there were also sheep and cattle in the area with related shepherd dogs.
In conclusion, which were your symptoms at the time you started the treatment and how long did it take for the antibiotics to make them regress completely?
To put my two cents in, tick bites resulting in Lyme is becoming an epidemic in the US but is under reported because of all the problems Jackie and Rico mentioned.
My bite was over 20 years ago and I started getting sick and doing tests soon after. I got diagnosed with everything, CFS, EBV, Fibromyalgia, etc. However it wasn't until a crisis in my life 18 months ago that "woke the critters up" and I became extremely ill. Many folks don't know they were bit because like me, they never got a rash. For all I know, I could have been bitten more than once. I went through painful and unnecessary tests the past year, being diagnosed with MS, Lupus, Hashimotos and more. I have only been in treatment with an LLMD since March so I have a long way to go but I have high hopes to be cured eventually.
I don't know how diffuse Lyme can be.
although I'm pretty sure that these new strains of avian flu especially the one that appeared in 2009 are causing a lot more trouble that is said.
I have read of many people in here with neurological symptoms that appeared subsequently to what looked like a cold a flu or sinusitis. even the location of the "patients" seem to be coincidental with a pattern of big cities or nearby large airports...
there was some awareness in 2009 and 2011 in alternative media that the vaccine (and consequentially the virus itself) could give neurological problems but the media is now silent on the topic.
well the new flu season has just started, bring it on.
The ticks that carry Lyme are tiny, not the size of big dog ticks. Here is a photo of a Lyme tick (replace "[dot]" with a period and close up all the spaces):
dogbreedinfo [dot] com/images8/Lyme_Tick_2 [dot] JPG
Your statement that "not very many people are bit by ticks in their lifetime" is an assertion that you cannot prove.
I am not sure of the tick prevalence in the States but I know for a fact that where we lived on the South Coast of NSW in Australia they are in plague proportions. Where we still go back to and spend every Christmas at my parents-in-laws house there is a local mob of kanagaroos that come onto their front lawn to eat their grass every afternoon (roos that are COVERED in tcks). It would be nothing when the 4 kids were little when we would throw them in the bath together in the evening for the nightly tick parade to pick anything up to 30 ticks off them (all mostly nymphs).
My Dad was an environmental surveyor working for an ecological company who had to trap wildlife, record on list native fauna and fauna as part of the building approval process for different firms. I remember one week him recording in his diary that he had removed over 100 ticks.
My mother-in-law had the tiniest nymph fly into her eye one windy day and it attached itself under her upper eye lid and had to be removed by a Dr after it had swollen her eye shut.
So just having a little problem at this point digesting the comment " it's interesting that Lyme is such a big concern given that it's spread by ticks and not very many people are bit by ticks in their lifetime".
The thing about ticks is that when they bite you not only does the saliva contain an anticoagulant to help stop your blood from clotting but also a local anaesthetic to try to hide the fact that they are there sucking your blood. That was why we had to do a nightly tick parade with our kids because they just plum didn't know they were there.