Can Lyme go into remission?

I got my bubble burst big time last night. After finding  the only Doctor in my area that understands Lyme,it is hush hush around here so I know he is it, I was so excited that finally someone understood, I have so many things still wrong with me so we are going step by step, my Lyme test came back that it is in remission (sp?) I still have plenty wrong with me so a friend from another group, who is the head of that group is upset because she says there is no way to be in remission in a year with not a lot of treatment and she means well, she wants everything to be treated, and she could be right, so I am not saying I am cured, I continue to have bad symptoms but has anyone been told they are in remission?

[JackieCalifornia]

I'm not medically trained, but having read a bunch of stuff about Lyme in the last 5 or so years, 'remission' isn't a word I recall seeing when discussing Lyme.  I suppose it could be used to apply to times when Lyme goes quiet and the symptoms aren't so bad, but just haven't read it anywhere.

More to the point, tho, 'remission' doesn't mean an illness is gone or cured, just snoozing.  Think of other ailments, like arthritis, which cycle through worse and better phases over time.  

You say in your post that your friend says "there is no way to be in remission in a year with not a lot of treatment".  I would disagree, because Lyme can be held in check by your immune system for long or short periods of time, and those cycles are different in everyone, both in frequency and in length and intensity.  Sometimes the cycles seem to follow the seasons, too, based on what I have seen other people post here and my own experience.  

Everyone is different in that way, and part of the reason may be that there are at least 200 strains of the Lyme bacteria, which have a variety of effects on people as the bacteria do their little dance.  Part of the reason is also that each of us has our own different, personal set of genes, and in each of us, our bodies each react differently to the various strains of Lyme, some producing a strong antibody reaction action by our immune system, and others not so much.  And also the ticks that carry Lyme often (maybe half the time) carry other diseases that have their own subtle set of symptoms.

With all those variables in operation, the possibilities of your own personal reaction to Lyme and any co-infections could be all over the place, which is a big part of why docs have a hard time diagnosing it.

Also, Lyme itself has a very long reproductive cycle like some other disease (such as TB and leprosy), but our human immune system (and also modern antibiotics) are set up to expect to peform a quick kill on invading infections, in the space of a couple of weeks.  It takes months and months to treat for TB and leprosy, and Lyme is in that category too.  What this means in some with Lyme is that after a few weeks of battling the invading Lyme bacteria is that your immune system figures it's done its job and stops reacting, but the infection just asleep and largely unaffected by the few weeks of treatment, since it is when reproducing that bacteria are most susceptible to being killed (as their cell walls are splitting into two new bacteria).

Why does this matter?  Because the usual tests (W. blot and ELISA) measure NOT the actual presence of Lyme bacteria, but instead measure your immune system's reaction.  It's like looking only for fire trucks to see where the fire is, but if the trucks went back to the station house already, you won't find the fire.  That doesn't mean the fire is out; it just means the trucks are gone, so looking for the trucks is not the best way to determine whether the fire is actually out.

Sorry to ramble here, but your friend's comment that you are in remission does not mean that you are cured or the disease is gone or will not flare up again.  It just means that the tests are not finding the current reaction of your immune system ... and there are reasons why your immune system is not reacting.

Remission is not a cure, and the lack of a reaction on the standard Lyme tests doesn't mean you are cured or the disease is gone.  If you are feeling better, it's because your immune system is holding the infection in check, as it can and does in many people for a long time.  I know people who didn't feel ill, just a little tired, but when tested for Lyme turned out to have a long-term infection that their immune system was keeping corralled but not killed.  Lyme is tricky like that.  It's why nonLyme docs have such a hard time dealing with it (never mind the patients).  

Sorry, I've got to run and don't have time to reread this, if it's confusing, let me know and I'll clarify later.  Your friend means well, but I disagree with her conclusion.

[JackieCalifornia]

Okay, I'm back now and just reread my comment above, which rambles.  Sorry about that.  Let me try to be more concise, fwiw:

Your friend said:  "there is no way to be in remission in a year with not a lot of treatment"

I would disagree, because your immune system can and will battle the infection, with more or less success depending on what strain of Lyme you have, what other diseases the Lyme tick brought along, the sensitivities of your own immune system, etc.

Some people respond well and quickly to treatment, others not so much.  You may be a quick responder with a strong immune system.

Another important possible explanation is that (as mentioned above in my rambling comments) the human immune system stops reacting to an infection after a relatively short period of time, so there are no antibodies for the usual tests to measure and find the bacteria, because the tests don't measure the bacteria, they measure your immune system's reaction to bacteria.

You may be in a lull in which you are feeling better, esp if you have an otherwise strong immune system -- my Lyme doc was amazed at how positive my Lyme tests were, given how long I had been feeling so awful, and said I have a strong immune system.  Everybody's different.

Lyme is tricky.  

[mojogal]

I agree with you. My Lyme showed itself a little bit 6 years ago but really showed big time during a time of great stress last year. I became very sick, couldn't eat, lost 40 lbs felt awful, now a year later, I have gained 30 lbs back but I now have brain lesions, white matter damage and can't remember a thing from one minute to the next so I dont believe it is in remission at all. BTW, are you sure you are not a doctor :-)

[Ricobord]

When I believe I first got Lyme and Bartonella, I went completely hoarse, got a nasty fever and chills, and I could hardly move from the severe malaise.  I was on vacation with my mother and she gave me a week's worth of penicillin that she was carrying.  I recovered surprisingly quickly and within a couple days, I was back to touring.  For the next 4 yrs and 8 months, I had unexplained bouts of disabling fatigue and headache that would come on suddenly and last 1-3 weeks. They would go away and I would feel "fine" again.  Then, in Aug 2010 after 2 years of chronic stress, my chronic symptoms began.  It was 16 months before I got my diagnoses and began treatment.

So, I believe it's possible to have periods of time mostly symptom free. I won't say completely well, as I realize in hindsight that I had mild tinnitus, light sensitivity, reduced stamina, and hormone swings.  In my research, I seem to recall a doctor saying that he would see these periods of "remission" primarily in patients who had insufficient antibiotics early in the disease.

[Ricobord]

For what it's worth, here's my opinion.  Lots of people with Lyme test negative according to the CDC, but I've never heard of a test showing that Lyme is "in remission". Lyme tests can change over the course of treatment and should not be used to determine the course of treatment or when to stop treatment.  No test can prove you're cured.  It takes a knowledgeable doctor monitoring your symptoms to treat you properly.

The PA-C at my Lyme doc's office told me that it is usually their sickest patients who test negative, as their immune systems aren't fighting the disease much anymore.

[mojogal]

Yes, my friend reminded me, I have brain lesions and can't remember at thing, that I had symptoms of terrible fatigue about 7 years ago, my friend who is a nurse and works for her LLMD wanted me to get tested then but the doctor was expensive and I couldnt afford it. This past year, I went through one of the most stressful periods of my life and all the really bad symptoms came out. I am in San Antonio, TX right now, here there is nobody that believe in Lyme, I happened to run into a TX Lyme support group and posted the where is a doctor around here question. I was given an answer to finally a doctor who I would not call a real LLMD but he believed in and would treat me for it. I emailed a few people back and forth and a Dr in Houston asked if he could call me. He has Lyme, he had many of the same symptoms as I do and made some recommendations, which this new doctor followed without me mentioning it, this Houston Doctor said never to post anything about which doctors in TX believe in Lyme because that get thrown into a courtroom saying they are quacks. I feel Like I am in a secret society and if I spill something I might be shot on sight. The joke the doctor from Houston told me was, what is worse than having Lyme in Texas? Having Lyme in San Antonio. he said the docs here are mean and never believe in Lyme, he is so right. Anyway, until I get to Florida where there is an LLMD I feel like I am in good hands, better than anyone else around, he is caring and open and he read the western blot which said I am in remission but he doesnt go into the co-infections so I need to do that at my next visit. Thanks for your answer.

[JackieCalifornia]

Thank you for posting this -- it is exactly the issue that many run into in states with Medical Boards controlled by those who do not 'believe' in Lyme.

And if I may make one more point:  if the Federal government takes over the health care system, the gov't docs will, in the search for efficiency and lower costs, set standards of treatment for all illnesses, and Lyme is one of those oddball diseases that will be an obvious place to restrict treatment.  After all, the IDSA says a few weeks of antibiotics is enough, and IDSA is not a bunch of wild men like ILADS, right?  Therefore (so the argument will go), extended antibiotic treatment for Lyme is forbidden because it is not necessary, and costs must be reduced.

The old saying 'he who pays the piper calls the tune' is exactly where we are in medicine -- remember the old days when there was no FedEx and no UPS or DHL?  All you could do was wait for the post office ... and there was no Express Mail, which wasn't added until the P.O. was forced to begin competing with the 'overnight' carriers.

Freedom of conscience for MDs to treat patients as they see fit will be the first casualty of government-controlled medicine; and we Lyme patients will be the ones who truly pay the price.  We will all be in the situation Mojogal describes above about the clampdown on LLMDs in Texas, and at that point, friends, we are all scr*w*d.

[mojogal]

Jackie, you are so right. And, I am not in good hands, I have no doctor now. I suddenly felt worse ever over the weekend which I think was from the reduction in medication that my doctor did for me on Friday ...I apologize for misspelling etc, its the brain lesions etc. I already walk with a cane, the brain MRI shows lesions which could be lyme but lyme lesions are usually bigger but part of my white mass in brain is damaged and wont come back according to this doctor who I thought was my angel...l I don't remember anything, it is getting worse as is my eye sight. I felt strange Saturday morning, weak, and shaky, I got up to go to the bathroom and fell and lightly hit my head. I still felt bad Sunday and My fiancee who is in Germany, because his son was in a bomb in Afghanistan and almost died 3 times and got a kidney transplant (and I could go on about everything that has happened to keep me here alone but it is unreal), he is coming in 2-3 weeks to get me out of this place, my apologies for TX residents. My fiancee wanted me to go to the emergency room but I wanted to wait to see what the doctor said since a home health nurse said I was fine, but after going back and forth with the Doctors office, the nurse said he wants you to go to the emergency room. Well I had been to the 2 hospitals near me and they are all the same, a waste of time and money. I get there by ambulance, to dizzy to drive and brought my brain MRI and my new medication list. The female Dr comes in and says you are over medicated and that is why you fell. I told her, I was on triple the medicine before this list and I am coming off slowly so I wont have another seizure which I had once before. She said this pain medicine is making you fall. I tired to tell her that I was using a cane before I was on pain meds and the only reason I was on pain meds is because I was so off balance while walking my dog that I used to have, and fell down this steep hill or what I would call a cliff, I had to crawl my way to the top with my fingers digging into the dirt....but nope, I fell due to the pain meds I wasn't even taking until after the big fall and that is why I am falling now, so I got to be tortured by all these stupid tests and catheters and had to hear nurses telling me that I am over medicatied on pain pills and it is the only reason I fell, so after 6 hours I was finally released and had to go home by cab and the cab driver was the only nice person I met all day. I cried all the way home, but the best part was in the cab I tried to call me doctor, I was hung up on twice, and finally got the receptionist and I said I want to talk to the doctor, I was put on hold while they talked to him and back and forth until the nurse came on and said he will see you on your appt friday, I said I want to talk to him now, Nope, no way, so I finally said If I dont get to talk to him in the next day then cancel  my appt for Friday. They didn't care and he didn't care so why should I go back to someone like that who used to hug me and say, I am so sorry nobody listened to you. What a joke. I am waiting for FL which will be 2-3 weeks and go from there. I am so disgusted with the doctors here and you are so right, it will get worse if the govt is in charge. My nurse friend who has Lyme and works for her LLMD was in the vietnam war. When she first got sick, 16 years ago, she thought she had agent orange, and of course you are a quack if you think that anyway but she is so tough, she  finally found this LLMD, who at the start of her practice was hauled into court in VA where they tried to call her a quack and she brought so much research that she and others had done that they let her practice as an LLMD. My same friend use to work for NIH, she worked there when AIDS was just coming out and nobody believed it existed and many people were dying. She said that is Chronic Lyme, many folks died because nobody knew about it and now there are some, not enough, doctors that will treat for it and she sees people still dying. Nobody should die. Why are we suffering, getting misdiagnosed while the true Lyme co-infection is killing us or damaging our bodies. We need to do something.

[JackieCalifornia]

I am so sorry to hear of what you are going through.  Hang on, get to Florida, you can do it!  

I'm wondering if you also got treated poorly because you were on pain meds -- a few years ago, when docs got alarmed that they were inadvertently creating addicts by prescribing narcotic pain pills like codeine, the docs cracked down so hard on everyone that we all became suspected junkies until proven otherwise ... but how do you prove you're not a junkie?!  And Lyme seems to be the same way.  

Take heart, we are all rooting for you to get to Florida -- keep on being strong, you are doing great holding up under all this.  Stay in touch with us, let us know how you do, okay?

[blamom]

I have been in remission for several months now, after oral doxy for several months, IV for 4 months (at which time I suffered a complete brain stroke), neither helped me, went herbal for 10 months and have felt better than I have in 10 years

[AllergyNerd]

Remission is possible, yes.  

[Lemak]

How long did you have lyme, and what kind of herbs you took. I had lyme and I am being treated with 400mg doxy daily and should be finishing next week (8 weeks total). Most LLMDs I viited, told me that I should not even test again because they believe it will be gone.

However, I think the doxy is causing a lot of panic attacks for me?

[mojogal]

Jackie, I really appreciate your support. I am supposed to be there in a month or less. It a fine line with my fiancee, he is in Germany at a hospital because his son was in a bomb in Afghanistan almost died, had a kidney transplant and here I am sick as a dog, waiting for him to pick me up. I can't wait to get the heck out of here but dont want to sound insensitive to him and his son. Anyway, I went back on the pills that the doctor took me off of way to fast that made me feel out of my mind, weak, I should have known better, I finally feel human again now, so facing facts, for the next month or so, no doctor for me, just have enough meds, i think until I arrive in FL. How are you feeling?

[JackieCalifornia]

Gosh, you all are going through a lot.  Hang in there, do the best you can, and you'll figure it out.  Some people wouldn't be thinking about how all this affecting others (like your fiance), so good for you.

I'm doing well, thank you for asking.  I was on antibiotics (abx) for a long time, and still take vitamins and supplements (suggested by a different doc from my LLMD).  I've been off abx for a few years now, and am doing well.

Take care, one day at a time and all that ... it really is all you can do, and you sound like you strong and holding up under a big load of issues.  Keep us posted, okay?  

[blamom]

I was diagnosed in 2005, but doc thinks I have had it much longer.  Herbs are through Monastery of Herbs, they have a website needs a Dr.s credentials to access.  Ask your doc