Welcome to MedHelp Lyme --
Many of us never saw a tick or a bite, but got Lyme disease and sometimes also got other infections not related to Lyme, but often carried by the 'Lyme' ticks.
It's not unusual for symptoms to sneak up on you over weeks or months -- sometimes it's just a mild misery -- tiredness, foggy thinking, kind of like a mild hangover for some of us. Every person is different, however, so don't try to pick apart the symptoms too closely: Lyme ticks often carry other, separate infections, which have their own symptoms blended together and make the diagnostic picture different from patient to patient. That's part of what confuses the docs.
Another confusing aspect is that the more traditional view of Lyme is the "we don't have Lyme here" approach. Partly that is because the ticks are the size of a poppy seed, and can hide on the scalp or other places that are not obvious -- we're not talking big ole dog ticks. And since ticks can't read maps, they are free to go wherever they want, even to states that proudly proclaim that 'the kind [of ticks] that carry Lyme were not in that area.' Lyme is pretty much everywhere at this point, since Lyme ticks can't read maps.
You say: "I've had blood tests and there is no sign on infection per many many tests, including blood tests." The standard tests you probably had were called Western blot and/or ELISA. To get a positive diagnosis of Lyme, those tests rely on your immune system's reaction to a Lyme infection; the problem is Lyme bacteria can and do suppress your immune system, so that you can have Lyme but still be negative on the tests. If you test positive on those tests, the tests are reliable; but if you test negative, you could still have a serious case of Lyme because of suppression of your immune system. Different tests are needed.
You say, "I was also on doxy for 21 days back in Nov/Dec." Doxy can kill a Lyme infection, but ONLY if the meds are started very soon after the initial infection, because the Lyme bacteria quickly create slimy shields (called 'biofilms') in the body where the Lyme bacteria hide and the immune system cannot reach to kill the bacteria. Other antibiotics are needed to penetrate the biofilms; doxy won't do it if it's been longer than a short period of time since the initial infection. Because the ticks are so tiny (note: we're NOT talking dog ticks here), it's easy to overlook them, and they like to hide on the scalp and other obscure places.
You say, "Just wondering if Lyme Disease would behave at all like this." In a word: yes.
You also say: "Never saw evidence of ticks, and they say the kind that carry Lyme were not in that area." Yeah, you'll hear that a lot.
Lyme affects everyone a bit differently: some of us get joint and muscle aches and pains, which others of us are foggy-brained like having a hangover. Some of us have harsh symptoms, while others just feel mildly miserable 24/7. You can see why the docs are confused, let alone the patients.
There is a serious split in the medical community about Lyme and the other infections they often carry, and there is no persuading those who think Lyme and any co-infections are just a little annoying that Lyme really is an illness that will no go away without appropriate diagnosis and treatment. Careful and complete diagnosis of what infections you have is important because tickborne illnesses often require different medications than just the old standby, doxy.
If you search online for --- michigan lyme disease --- you will find links to patient-oriented groups who can guide you to MDs who really do know how test, diagnosis and treat Lyme and any co-infections you might have. If you don't have Lyme, a good doc will tell you so.
You will see the term "LLMD" -- it's patient slang for 'Lyme-literate medical doctor", meaning a doc who understands the problems associated with diagnosis and treatment of Lyme and other infections (babesia, bartonella, ehrlichiosis, and a few others) and know how to test, how to read the results, how to treat, what meds to use, and how long to treat for.
Because Lyme has particularly slow reproductive cycle, it takes longer than a couple of weeks to cure it, contrary to what we are accustomed to with other bacterial infections. Because the other diseases that the 'Lyme' tick often bring along in addition to Lyme often do not respond to the meds used against Lyme, the doc will often treat other infections the trick brought, and then treat Lyme afterward. To try to kill all the infections at once would be too hard on the body.
I'm not medically trained, but I had Lyme and babesiosis, so I've been through the dance. It's definitely worth doing, no matter how long it takes, because Lyme will not just go away. It is related to another type of bacteria that cause syphilis, and if you have read about the awful things that happened to those with syphilis before antibiotics were discovered, it was a terrible fate. The sooner you get diagnosed, the sooner you will be better.
It took me 20 MDs to get a diagnosis of Lyme and babesiosis, and the better part of a year to complete treatment, and then more months to fully recuperate. Everyone is different this way, but treatment is necessary because Lyme will not just go away.
Check out the Lyme resources in Michigan, and you might also look at neighboring states if you are near a border. Local Lyme groups can often clue you in on who the best docs are in your area.
All this hassle really IS worth going through -- I've been fully well for more than five years now, and it was worth all the grief. Let us know how we can help, okay? And keep us posted on how you do --
Thanks for your response.
I just woke up feeling like crap, which is usual these days, and decided to get on line and try to do some more research.
I guess my question is, can Lyme Disease, or it's cohorts cause urethral, testicle pain, and pain in the perineum area? Have you heard of anyone else with symptoms there? I also have a strange feeling around my throat, a mild soreness on the sides of my windpipe, but no swollen lymph nodes. Even two doctors have checked, and no swollen lymph nodes. I do have a couple white spots on one tonsil, but have been tested for strep, and it was negative.
I'll check into the Michigan Lyme Disease groups, and see what I can figure out, and where to go.
Thanks again for your help. I'm glad you got better.
I would recommend going on FB. We have hundreds of support groups on every lune related category. I have learned so much there.
Lyme bacteria are in the same scientific family as syphilis -- tiny spiral-shaped bacteria that move in and make themselves at home for the long haul and can do a lot of damage to the patient.
While much of the current medical community doesn't take Lyme very seriously, even the Centers for Disease Control (CDC), an arm of the US govt, says, "Syphilis has been called 'The Great Pretender', as its symptoms can look like many other diseases. However, syphilis typically follows a progression of stages that can last for weeks, months, or even years...."
While the CDC hasn't yet correlated Lyme and syphilis (tho they are in the same bacterial family, so I read), MDs who specialize in Lyme take a Lyme infection quite seriously.
Whether Lyme can give you the pain and symptoms you describe, I don't know, but given the familial relation of Lyme and syphilis, I would not reject the possibility out of hand, as the variety of symptoms you are having may well mean something.
Lyme hits different people different ways with a variety of symptoms that don't match those of others also infected with Lyme -- some of us have 'brain fog' (difficult thinking and remembering) and some have joint and muscle pain; it all depends on where the bacteria decide to camp.
In other words, don't try to parse your symptoms too closely: Lyme doesn't play that way. All the more reason to see a Lyme specialist.
It sounds like your docs are viewing your variety of symptoms like the old tale of 'the blind men and the elephant': they look at each symptom you have but are perhaps missing the big picture. There is a great deal of ignorance and misunderstanding in the medical community about how easy or difficult Lyme is to get, how widespread it is or is not, how to diagnosis it, and finally: how to treat it and for how long.
The docs you have seen who looked at your tonsils and checked your lymph nodes are focussing in rather closely on those to areas, but are they able to see the big picture? Dunno. But in your situation, I would go to a Lyme specialist for a second opinion. When I was ill, I went through 20 highly trained MDs of many specialities and none, and the only one who tested me for Lyme consoled me when the test came back positive (!), said that I 'could not possibly have Lyme.' Full stop. He was SO wrong. I took that positive test result and went straight to a Lyme doc, was properly tested, diagnosed, and treated. All is well now for me, some seven years later.
If you were in my family, I would suggest that you not wait for unanimity among the medical profession -- in a few years, perhaps, but not currently. You could gather the different view points from MDs and then decide what to do, tho if it were I, I would go straight to a Lyme specialist, because that's the only kind of doc who could imo authoritatively state that you do NOT have Lyme.
Best wishes, and let us know how you do --
... and PS, as much as I don't think the CDC (Centers for Disease Control) are up to date with their view on Lyme, over all it is an excellent organization. Here is a clip from their current website, which may speak to your questions about sores etc. with regard to syphilis -- which is closely related to the bacteria that cause Lyme disease.
Not saying you have either Lyme or syphilis, but the description sounds a bit like what you described, tho the progression of symptoms in syphilis may be different from Lyme -- the two infections are related, but not identical -- and I'm not medically trained, so take this fwiw:
================from the CDC website==================
Syphilis has been called “The Great Pretender”, as its symptoms can look like many other diseases. However, syphilis typically follows a progression of stages that can last for weeks, months, or even years:
The appearance of a single chancre marks the primary (first) stage of syphilis symptoms, but there may be multiple sores. The chancre is usually firm, round, and painless. It appears at the location where syphilis entered the body. Possibly because these painless chancres can occur in locations that make them difficult to find (e.g., the vagina or anus), smaller proportions of MSM and women are diagnosed in primary stage than men having sex with women only. [footnote omitted] The chancre lasts 3 to 6 weeks and heals regardless of whether a person is treated or not. However, if the infected person does not receive adequate treatment, the infection progresses to the secondary stage.
===================end of clip===========================
I'm one of those people that definitely have some atypical symptoms that I know are from Lyme and babesia. My main symptoms lightheadeness that waxes and wains, chronic post nasal drip and chronic sore throat. Every 7 days the babesia flares and attacks my body and causes me to feel sick with the post nasal drip and sore/hoarse throat getting worse. The thing in my head is always there and I haven't been able to nail down a pattern for it.
As Jackie said every person exhibits different symptoms sometimes they repeat with other infected folks, sometimes they rhyme and sometimes they're quite unique. Lyme bacteria and babesia parasites are very opportunistic in that they look for "opportunities" to take advantage of you. In my case the belief is since I've had nose surgery in the past the bugs attack those less than healthy areas.
While lyme/co-infections are mostly clinical diagnoses I think in your case it would benefit you to at least get a full Lyme panel test from Igenex and see if anything shows up. It'll run a few hundred but worth if esp if you have it. Just get a doctor to order it for you and we can easily read your results here.
Given that the Lyme bacteria often travel with one or more co-infections, along with the mix of those infections and the different reactions of each person's immune system, it takes a wise and experienced doc to determine the possible/likely infections a particular patient has.
Our immune systems also react differently to different infections, so the variables are many. I'd be very cautious of website diagnoses when it comes to Lyme and other tickborne illnesses, since even the docs can have difficulty figuring out what to test for.
I would also be cautious about relying on 'website diagnoses' here or elsewhere -- Lyme and the other infections are subtle and sneaky, and it takes a wise and experienced doc to assess symptoms, to know what to test for, and to interpret the results accurately.