I have been suffering for 10 years now - which started with urinary issues which were triggered by oral contact with female. I believe her saliva came in contact with a cut on my body. I am 35 now and lived in US entire life.
Year 0 - 4 White blood cells in urine, cloudy urine, urethra discomfort. Also had boils on face and buttocks. One on face was drained and puss taken - tests on puss showed nothing. Rash on chest. Saw several doctors over 3 - 4 year and even a urologist. Got the usual antibiotics doxy, cipro, levaquin, amox over the years - all helped for about a week and then symptoms would come back. Tests for STD's, Lyme, AIDS, all showed negative.
Year 6 Started to feel dizzy and mind was in funk. Turning my head quickly causes me to go whoa. Even walking sometimes is difficult. Joint pain started in hips and muscle pain in leg very strong (level 8), also skin sensitive. Doctor sent me to physical training - with no major improvement. Hip xrays show okay - however lymph nodes in pelvic area are calcified. Doctor does not seem to think anything about this. I KNOW THIS IS THE KEY TO THE PROBLEM - but no one listens!!
Year 7 had nuerology tests (EMG) no problems detected. More physical therapy - no improvement. MRI of lower T spine shows no problems.
Went to rhumotologist - all test come back negative for arthritis. Perscribed lyrica, sulfasalazine, dicoflena. Sulfasalazine helped a bit with joint pain but took about 2 weeks before it kicked in.
Year 8 Urinary issues are getting extreme - went to different urologist. Urine showed clear but still had symptoms. Now experiencing urgency, low flow, frequency. Urologist gave me more anticiotic CIPRO which made me feel great - all symptoms gone (urinary, dizzyness, joint / muscle pain gone). Continuing to take antibiotics - symptoms start to return 10 days into antibiotics. Urologist did cysto of baldder - showed prostate was inflamed and bladder wall had ridges (was not smooth). He did not think this was a big deal. I do. He put me on Avodart - which reduced urinary problems 50%.
Year 9 Started to get chest pains and feels as if the heart is inflamed. Ribs and skin around heart feels bruised. Had severe palpitation and went to hospital - they admitted me for 2 days and stablaized me, did stress test and released me.
Year 10 Still having chest pains, dizzy, urinary issues, joint pain. I feel like I am dying most days. Do not have fever but entire body feels it just wants to shut down. Not sure what to do next - I know this has to be sime type of infection (NO DOUBT) - but doctors do not believe it since I am not running fever, vomiting, etc.
Anyone have any recommendation on what I should do next? I am getting to the end of my rope. All my doctors dont be able to think outside the box - just treat symptoms without treating or identifying the real problem.
You THINK your doctors are not thinking outside the box because you don't know exactly their thought process. Sometimes the symptoms are all you can treat because there is nothing that is coming up on objective testing. I have a feeling you have something called interstitial cystitis which is a chronic problem that will never go away unfortunately. Sometimes antidepressants such as SSRIs or tricyclics can help, not because you're depressed (which you probably are if this has been going on for 10 years!) but because sometimes cerebral neurotransmitters which are dysregulated can result in physical symptoms in the autonomically controlled organs of the body (such as the bladder and bowel).
Calcified lymph nodes don't mean anything unless they are in the chest, in which case your geography is important. You have to realize that you've had a number of objective tests done that have not shown anything--much of your symptomatology is non-specific and doesn't point towards any single diagnosis. I am also pretty sure you've become VERY hypervigilant of every little tweak inside your body and that doesn't help things.
Notice I didn't say that any of this is in your head, because it's not. It's just that there probably was something that originally set this process off, but that agent is now gone and there are other factors that are causing your symptoms to continue. The one thing you have to be wary of is of anyone who offers to give you a "silver bullet" explanation or solution to your problem. In other words, someone who feels they know EXACTLY the cause of your problem because all that will do is get your hopes up and I assure you that that doesn't exist.
I went ten years undiagnosed/misdiagnosed. My first Lyme test came back negative, as well. Fortunately for me I had an astute PCP who insisted on a second test, this time using a different lab. And that one came back very positive for Lyme.
I'm not saying this is what you have. But the chest soreness/pain, the rib soreness and the heart palpitations (combination) points directly to it.
I would recommend you find a Lyme Literate MD (LLMD), a specialist who could at least rule it out, if that isn't what you have. Testing for Lyme is pretty faulty, so that a clinical diagnosis (or ruling it out) is what you need.
If you do have it, ask for a picc line of IV Rocephin. That has helped me much more, and more quickly than the oral antibiotics.
Just remember, though that rib soreness and palpitatons does NOT directly point towards Lyme disease. These symptoms are NON-SPECIFIC. Look, I will provide a list with things that can cause:
Acute leukemia with bone marrow expansion
Here is a list of things that can cause palpitations:
AV nodal reentry tachycardia
Rapid atrial fibrillation
Rapid atrial flutter
AV re-entry tachycardia secondary to accessory bundle (Wolff-Parkinson-White syndrome)
Non-sustained ventricular tachycardia
multifocal atrial tachycardia
tachycardia-bradycardia syndrome (Sick sinus syndrome)
Libman-Sachs non-infective myocarditis
etc. etc. etc.
Now things that cause rib pain AND palpitations:
Gummatous syphilis with cardiovasclar involvement
Multiple myeloma with hypercalcemia
etc. etc. etc. etc.
Those lists, by the way, are not even CLOSE to being exhaustive. That is the reason why when people list a whole bunch of non-specific symptoms and expect a diagnosis, the doctor can't really find a cause. It's also the reason why giving "silver bullet" diagnoses aren't helpful. There is no one condition that explains your symptoms, and there is nothing that points towards one diagnosis or another.
I have not seen an internist - is that the same as an infectious disease doctor? My doctor feels this may be the next step. I am not depressed - I am the type of person who goes on...kinda like the marines. Thanks for the reply - I really appreciate your ideas and guidance!
It was my Lyme doctor who stated that those random heart pains in an otherwise "healthy" person (one whose bloodwork comes back normal), while at the same time having rib and sternum soreness points directly to Lyme disease.
It's the randomness of the pain, that it comes and goes (vs. a constant thing found in other diseases) which points to Lyme. That is key, and I forgot to mention that (as I currently have encephalopathy from Lyme so my memory isn't what it should be).
The majority of infectious disease doctors are not Lyme experts. Only a Lyme specialist could rule it out for you.
I'm not saying it's Lyme (of course) but it is the most likely cause of your symptoms as it's now in epidemic proportions in many areas (some towns in my area, it is estimated that 1 out of every 2 people have it).
sl0823474, an infectious diseases specialist is an internist by training and has done some extra training in infections. Going to one of these doctors may be a good thing for you to put the infection thing to rest once and for all--I highly doubt they'll find anything, though it will probably be good for you to go.
There are tons of things which can cause "random chest pains" and if you see this in a healthy young person, there are a 100 different things you'd think of before Lyme disease.
Atrial fibrillation is just one of the many things which can give random chest pains which has NOTHING to do with Lyme.
The majority of infectious disease doctors are not Lyme experts. Only a Lyme specialist could rule it out for you.
*****It's unfortunately this type of thinking which has many people thinking Lyme is some type of disease which it is not. There is nothing special about the Lyme bacteria compared to other bacterial/spirochetal pathogens. What this is an example of is trusting a doctor only because he is saying what the person wants to hear.
I'm not saying it's Lyme (of course) but it is the most likely cause of your symptoms as it's now in epidemic proportions in many areas (some towns in my area, it is estimated that 1 out of every 2 people have it)
******There is a society of people who think the exact same thing about Whipple's disease and they talk about "Whipple's disease literate doctors" and make statements about "epidemics" in the exact same way others do with Lyme. Unfortunately in many places it's gotten out of hand and people are getting IV antibiotics for long periods of time. This is not medically indicated and is very dangerous considering all the problems we have with bacterial resistance, Clostridium difficile diarrhea (of which ceftriaxone is one of the most common causes), and ceftriaxone-specific complications of gallstones.
It's also very frustrating because if you have a doctor who speaks from scientific evidence and is refuting chronic lyme disease, a Lyme proponent will simply say, "This doctor is just saying what he reads in books," or the famous, "This doctor is not thinking outside the box." This is very frustrating because it is an emotional response from Lyme proponents, there is no scientific basis to this, and it causes people to stop trusting conventional doctors who practice via scientific evidence.
Hi S1071273, if you post on the Lyme board requesting a Lyme Literate Medical Doctor in your area. Then some names can be given to you. You will first need to turn on your Private Messaging which at the top of the boards the Mod's have instructed on how to do this.
I think after 10 years of going to doctor's that don't look outside the box and only go by text book it is most likely time to look in a different direction.
Bacterias and Viruses "can" clog up the blood vessels threw out the body. And damage the nerves. I myself have had this problem and they clogged up the vessels in the right side of my head. And behind my right eye. I started taking...Serrapeptase, which is an enzyme from the silkworm, along with my protocol that my outside the box thinking doctor has me on. And it has truly helped to open them up.
I hope you find your answers, this has got to be frustrating.
And if it is affecting your heart and if it is clogging up vessels it is truly time to switch doctors. Majority of infectious Disease doctors are not specialist in Lyme. "IF" this is what you have then it would be your best move to get to one.
P.S. It makes sense that you have some type of bacterial infection going on if antibiotics help to some extent. Just a thought, but maybe the doctors don't have you on high enough strength. "OR" maybe you need to be on a cocktail of antibiotics for a long period of time.
There are also bacterias like Mycoplasma Pnumoniae, Chlamydia Pnumoniae, that can cause this. Have you been tested for these. They are easily spread through coughing and sneezing...
I do want to mention too, those urinary tract issues (which I also had)...the Lyme bacteria *loves* the bladder and it's very common to have those types of issues. I had many, many UTIs over the years (which I had never had before getting bitten by a tick). At that point I would wake up during the night to pee four or five (or more) times. Totally not normal. But my PCP did not link the frequent UTIs with my complaints of sore throats and low grade fevers, then heart racing/palpitations. She asked me if I had been under more stress lately (!).
So combined with the urinary issues AND the rib soreness....and then the dizziness...the neuro symptoms....it shouts Lyme to me because firstly, I've had them and I have Lyme, then also, these are all classic Lyme symptoms. I don't believe that viruses or other diseases have these specific symptoms all lumped together (not classicly) but Lyme Disease does. UTIs with neuro symptoms and the rib/chest soreness are ALL common symptoms.
Talk to someone who has Lyme and they can totally relate to your story. I went ten years with doctors scratching their heads (or telling me it's just stress-that it's all in my head).
Update: Saw my GP and agreed ID specialist is the next step. He also did Lyme test - it will take several days to get results. Doc gave me Doxycycline but having taken it for years I think whatever I have - it has built up resistance since it is not helping much this go around. Cipro and levequin have been most effective recently. Doc also gave me breather since my lungs are congested.
Also saw my cardiologist and echoscan came back fine so heart looks good. He's not sure whats going on and wants me to get more exercise. So in his eyes heart is in fine working condition even though BP is a little high. He gave me perscription for that - even though I think high BP is being cause by infection.
My energy level has dropped and my muscles and skin are in so much pain. I am not sure I can take it much longer - not sure I can wait for the ID appointment as it seems to be reaching a critical stage and a visit to the hospital my be near. Almost feels like pneumonia is knock on the door.
Well if your PCP suspects Lyme, you should find yourself a Lyme doctor, who may or may not also be an Infectious Disease doctor.
Most IDs do not know much about Lyme at all, as strange as that sounds. Lyme is one of those diseases that is a specialty. You want to visit a doctor who sees it and treats it everyday, who has read up on the latest about it, has an expertise in the area, etc..
Also Lyme tests are notoriously bad. So you could have a false negative or a false positive. Only a LLMD (Lyme Literate MD) could rule it out for you or clinically diagnose you.
i just read your quote and have been thru the same conditions you state, been thru the same proceedures as well to no help. What have you found since your last post. its so bad now i can not walk. I have been everywhere I am amazed to find someone who is going thru this as well. Any help would be greatly appreciated.
Still going through it...chest pains and palpitations are getting worse. Doctors still do not know what is going on?? Any luck on your side? I think I have a stealth virus like XMRV or something else. It seems that virus diagnosis is very difficult if it is not one of the usualy suspects.