new with many questions.

[chefsalad]

Thank you for taking the time to read my post. Recently I visited my Dr. thinking I may have had varacose veins fro some time behind my knees as the pain was very intense and walking a discomfort often needing breaks. No varacose viens, but he suspected arthritis.Bi-laterall x-rays showed "you've got some pretty good Arthritis going on here" as the Dr.put lol. before my visited I was given 2 typesof anti-inflammotories that didn't do much to be honest for the pain. They don't ache so much as they are painful. I was shocked when he ordered my blood to be drawn as he suspected it may be Arthritis from Lyme's disease. Given Ultram  now, and that is helping a lot. I also found out his wife has it and has to do IV type treatments for it. I never remeber a rash or feeling ill a particular time, but of course the ill feeling could be mistaken for a flu I assume. So....what's up with this Arthritis? It seems to be getting even more painful as the weks go by. In good health in general but do take Mirapex for some muscle twitching which started a year ago. Nueroologist calls it benign Myocolonus. Any info on this would most apprecieated. I am 46, otherwise very active, and starting to feel physcially old before my time. Thank you. Carolyn

[JackieCalifornia]

Glad you are remembering to watch the sailboats ( = smell the flowers) and remember that there is more to life than Lyme.  It gets hard to do sometimes, and depression can be a definite component of the illness in some.

Treatment was a breeze for me, compared to being sick -- not that I felt better right away, but I didn't feel any WORSE.  I think it affects everyone differently.  I may have mentioned (at least I did in some post somewhere on this site) that my LLMD insists on taking yeast-based probiotics to avoid potentially dangerous C. difficile diarrhea from long tern antibiotics (abx), which kill all the good bacteria and open the way for the really bad ones.  Well, lucky me got colonized by the yeast, and it spread throughout my body, and I was one sick chicken.  But I never felt worse than I did with Lyme and babesiosis.

The IGeneX test is the closest there is to a yes/no pregnancy-type test, but nonLLMDs don't use IGeneX, on the theory that all that needs to be know about Lyme and Lyme testing has already been discovered, thankyouverymuch.  The reason it is a better test is that it doesn't look for the immune system's reaction to the presence of Lyme bacteria, but instead looks for DNA bits of the actual Lyme bacteria, as I understand it (someone correct me if I'm wrong).  Problem is that when Lyme is just chillin' somewhere in your cartilage, it's out of the way of the blood stream, so I don't know how many DNA bits end up in the blood to be measured after a certain point.  That's why LLMDs will sometimes give a short course of abx, to wig out the bugs and get them out into the open where their DNA can be found (for IGeneX tests) OR to stir the immune system so its reaction can be measured (W. blot and ELISA tests).  Or something like that.  Somebody correct me if I got that twisted.

Not to freak you out, but the Lyme bacteria are spiral-shaped, so they are called 'spirochetes.'  And guess what else is caused by a bug in the spirochete family?  Syphilis!  And until penicillin was found to act effectively against syph, it was also a devastating disease that could lie dormant for years.  Penicillin is not effective against Lyme, tho.  Dunno why.

It takes a while to get the Lyme tests back.  Just processing time, nothing to worry about.

You hang in there, and go watch the sailboats for the rest of us.



You'd be right to think an infectious disease (ID) doc would treat Lyme, but no, they are some of the worst koolaid drinkers when it comes to denying Lyme.  Why?  Bec. one of the first docs to focus on studying the strange illness arising in Lyme CT was an ID doc, and he is now a leader of the IDSA, Infectious DIsease Soc'y of America, the leading voluntary doc org for those who practice in that field.  They, being the 'experts', set the diagnostic and treatment standards for all infectious diseases, and all other docs bow to that ... and all ID docs already are believers that they are infallible at some level.

So it's rare that an LLMD started life as an ID doc.  Sadly.  We could use their help, and boy will there be some red faces when they finallly wake up.  Not Soon Enough imo.

[chefsalad]

...twenty??!!... I almost feel off my chair lol, but I totally believe you. In some of my reading I have seen how long it has taken for some people to get diagnosed.  I did a little reading on the testing procedure as well. have an understanding of it to a degree. I stopped in the office today (it's smack across the street)  to see if my bloodlabs were in yet. The nurse/receptionist said "part of it LYME test was back, but part was pending".. Of course in my mind I'm thinking that means that I DID positive for antibodies and now more exstensive testing is done. Hmm.. I hope I'm wrong. They did a CBC and maybe she means that part is back but not the Lyme yet. Urggh.. Though she said say Lyme.   I've been thinking how I'm always rubbing my neck because it feels tight and I saw a stiff neck could be a symptom. I can see where it is so hard to accurately get a diagnoses fom the symptims. The stiff neck I have I believe is from stress but.. if a person had Lyme could be that too. Wouldn't it be so easier that if you had Lyme disease, you test it like a pregnancy test? lol A simple "yes" or "no" would show up in the box. Ahh... but that would be too convienant lol. I'm  still crossing my fingers on this hoping it's negative. When you did you're treatment did you get very sick? I hear that the bacteris release toxins when they're being killed off and you get sick. You can tell me the truth it's ok. No matter wht, I'm sure learning an awfullot about the disease and maybe one day it can be used to help someone out  who has this. LIke identifying the bulls eye ring etc.. What  kind of doctor treats Lyme anyway? I  would think an infectious disease Dr. Am I right? Don't worry about the long answer. I've been known to bend some ear myself lol. Thanks for talking with me. I am enjoying a beatiful sunny day here in PA looking out window watching the sail boats go by. Even in our stressful times, enjoying little things like that shows me just how good life is.  

[JackieCalifornia]

Glad to help -- and I think you're asking all the right questions.  Sometimes the very hardest thing is for all of us to grasp that not all docs are created equal and wonderful, and they certainly don't all have open minds.  But they are human after all.

I don't think the knee symptoms are always obvious on the outside, from swelling.  It can be internal, so don't worry about not seeing a lot of swelling.

The tests may indeed be negative ... the tests are not very accurate, and a while after infection, the immune system trails off and figures it must have killed the bacteria, so the immune system throttles back.  The problem is that Lyme is not easily killed like a 'regular' bacterial infection, so it can be hiding in various places (knee joints for one, the nervous system for another) without being detected easily by the immune system.  

Here's the clincher:  the basic, common tests for Lyme, called the Western blot and ELISA tests, are structured not to detect Lyme bacteria, but to look for your immune system's REACTION to Lyme bacteria.  And, as mentioned above, the immune system goes back to sleep figuring Lyme must be gone after a while like any normal infection would be.  So the tests often come back negative, when in fact you can be really ill.  That's why you need an LLMD, who understands this:  nonLLMD's generally don't.

Lyme has a trick:  it has an exceptionally slow reproductive cycle, and it is while reproducing that all bacteria are most susceptible to antibiotics.  Therefore the usual treatment schedule for nonLyme bacteria is what, two weeks?  Maybe three at the outside?  That schedule works for bacteria that divide every few hours, because with every new reproductive cycle, the antibiotics are there to hammer the bacteria at their weakest, and then the immune system can wipe up the few stragglers.

Lyme, however, like tuberculosis and leprosy (aka Hansen's disease), reproduces so slowly that longer term treatment is required to hit the bacteria enough times to kill it.  That is why Lyme is usually treated with months and months of antibiotics, just like TB and Hansen's.  I think the usual treatment cycle for TB is something like a year or 18 months ... and all docs understand that this is necessary, but when it comes to Lyme, mainstream (nonLLMDs) don't or won't acknowledge that aspect in Lyme.  I don't know why.  No doc would say that TB treatment should only be two or three weeks, but that's what the critics say about Lyme treatment.  That's why you need to see a Lyme specialist.

THEREFORE you may indeed have negative tests.  Sometimes an LLMD will give a short course of antibiotics and then test again, because it will have stirred up your immune system to react.  That, combined with your history and symptoms, will in the hands of an LLMD produce useful information and a gameplan.

My knees never bothered me much ... I think I had a low level infection for at least several years that my immune system was able to keep under control.  I just felt tired all the time, but assumed it was being too busy at work and home.  The only odd thing was that when I got up in the morning, the soles of my feet were sore.  Strange, huh?  I would hobble around for about 15 min. and they would get better, and I even got plastic arch supports thinking that would help.  Then I probably got bitten [again], getting suddenly ill like having a mild case of the flu but just by feeling lousy and a little confused.  We were traveling, and I assumed it was something I ate.  That feeling went on for a while and got better, but never really went away.  Then travelling back East a couple of years later, I got really sick, like the flu but with no stomach issues.  I couldn't think straight, couldn't concentrate, was really cranky (more than usual), and was the in 'flu with a hangover' phase.  It just didn't go away like the flu or a hangover would.

So I started the rounds of MDs with fancy medical centers and local docs both.  Half the docs thought I was just a nut case, a middle-aged female who was simply depressed and looking for attention and sympathy.  Uh, no.  

Twenty (!) docs later in my quest, one kindly doc in desperation tested me for Lyme, and it came back weakly positive.  She said gently [her exact words] that I couldn't possibly have Lyme because she had patients with Lyme and they are all near death.  Near death!?  

Well, I sure FELT like I was near death, and I couldn't work or function in daily life, so I took that mildly positive Lyme test to an LLMD, who diagnosed me with Lyme and babesiosis, which is similar to malaria.  And it took 20 docs over a year to not figure this out -- whaaaaat??

So that's the looooong answer to what brought me to have the Lyme test done:  desperation, and a kind (if ultimately clueless) doc.  

That was about 4 years ago, and I am doing fine now.  Long term antibiotics did the trick.  Some co-infections [other diseases carried by the same ticks that carry Lyme] are harder to kick than babesiosis, which was a pretty straightforward cure, and you really need a doc who thinks big thoughts about all these things, to be able to imagine what is ailing you.

Sorry for the too long answer, but sadly my experience is not all that uncommon.

Let us know how you do, okay?

[chefsalad]

Wow, that's a LOT of great information, thank you so much!  My GP has the wife with Lyme's Disease. She is on the IV meds. About a year, or year and a half ago, I had a flu from HE** and I'm not a flu person. I just have to wonder about that. Hmmmm.. I was in so much body pains during that "flu". Like the "ate". Good to know. I do know anything "itis" means inflmation. I wondered why the knees were involved as a symptom of Lyme's. Thanks for that information too. I don't really have inflammtion in them that I can see, but maybe a little body weight is covering that. I could stnd to lose about 10-12-maybe 15 lbs. I do aslo have an anti-inflammatory but  I was sugggesting thatthe Ultra seems to be what is taking most of the pain away realizing that lessening the inflammtion helps also.  I exect to have my results in later today or tomorrow at latest. I'm feeling that they are negative but am prepared if they are not. In my mind I'd be very sick if it were positive. If you did not have the rash I'm assuming you went untreated until a later date. What brought you to have the test done? Do/did you have Arthritis in the knees also? Thanks again for everything. You've answered a lot of questions I had plus some. Will let you know how my results come out.

[JackieCalifornia]

Welcome.  Sorry to hear you aren't feeling well.

Are these two different docs you speak of -- the neurologist, and the doc whose wife has Lyme?  I will assume they are two different docs -- that said, here are some thoughts for you, but I'm NOT medically trained, so take my comments for what they are worth.

There is a split in the medical community about how to diagnose and treat Lyme.  Neurologists in particular are not inclined to recognize Lyme symptoms as such or to treat aggressively.  So the neuro, instead of looking for the cause of your twitching, for example, gives it a label -- myoclonus -- which simply describes the twitching symptom, not its cause.  It's like saying you have a stomach ache but not trying to figure out what is causing the stomach ache so it can be cured.  'Benign' means not harmful, so the doc is telling you it's a symptom without meaning ... but if I were you, I would keep looking for a doc who is interested in the cause.  And just so you know, twitching and even muscle cramps are not uncommon in Lyme, because the infection irritates the nervous system AND the Lyme bacteria use up magnesium in your body, and low magnesium causes muscle twitching.  I had both twitching and cramps before I was diagnosed.  (Magnesium supplements helped me a lot, any type ending in '-ate', like magnesium malate, aspartate, orotate, and maybe citrate, which I have read are easily absorbed by the body.)  If you do take supplements, be sure to tell your docs, so they can account for the fact that your symptoms may be lessened as a result.  

And pain and inflammation in the knees is common in Lyme too, because the bacteria hide in the body in places where there is low blood flow and the immune system can't easily reach -- and knees fit that description quite well.

And speaking of treating the symptoms instead of the disease, Ultram is a painkiller, which is nice when you're hurting, but if there's something wrong that can be fixed, treating just the pain won't do it.  Anti-inflammatories, ditto.

Many of us never saw a rash (I didn't), and the onset symptoms were vague, like an odd case of the flu that just never quite went away.  I often described it as like having a hangover and the flu at the same time ... and I had not only Lyme, but another disease the same ticks can carry -- of which there are several, which need careful diagnosis and often separate treatment from Lyme, because the same meds don't work on all the diseases the ticks can bring.

So yes, there could be other reasons for that symptom, but give your other symptoms like your knees, I'd follow up with the doc whose wife had Lyme, or if he doesn't treat Lyme, then ask his advice for finding a Lyme specialist.  IV treatment is not all that common, from what I read, except in people who are severely ill and do not respond to oral antibiotics (pills), so you won't necessarily end up with IV meds.

Best wishes -- let us know how you do, okay?