I first thought about this topic awhile back, as I have had a few people tell me that they HAD Lyme disease, had their treatment (whatever their non-Lyme believing doctor gave them) and were wondering if they still had it as they still didn’t feel well after treatment. But the doctors said that they were all better! Or they felt better for awhile, and are starting to have reoccurring symptoms. OR, those who say they were reinfected with Lyme. So.. not eradicated to begin with or reinfection? Once you do feel better, is Lyme disease all gone?
I have done a TON of research on this topic and hit a brick wall. So many different beliefs on the matter. Most online sites only present the CDC aka “The Devils” belief that Lyme is cured in 30 days or less and that’s that. End of case. A lot of pages I have looked at go by this notion. Well, we know this isn’t true. Millions of people are suffering right now. I have discussed this topic with my LLND and know my DC doc’s thoughts on the matter. Googled away. Read some books, well, what I could of them. I am going to go with a big fat NO on this one, and I will explain why.
The CDC idea on the matter in their own words on their “Frequently Asked Questions” section when asked if it was true that Lyme doesn’t go away, “No. Patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.”
This opens another topic that they refer to this as “Post Treatment Lyme Disease Syndrome”, but another day, another blog.
By the way, the CDC recommends 2-4 weeks of treatment if you haven’t ever visited their visited their website.
So, their stance is that Lyme does go away, and with a quick treatment protocol at that. Kind of makes you want to throw them the middle finger, eh?
Off topic, but, once again, not remotely acknowledging chronic Lyme. Most of us experiencing chronic Lyme or if you have read my previous posts about the CDC having multiple members know that the IDSA members (who are responsible for the CDC guidelines) were heavily rewarded by not acknowledging Lyme as a serious long-term disease, so, it kind of tells you that there is no fact or truth to what they have to say on the matter. As many of you know, or have experienced, WAY, WAY more than 10-20% of patients are not better after their 2-4 weeks of treatment, which shouldn’t be enough antibiotics to treat Lyme to begin with anyway. Shame on you CDC and IDSA.
Many LLMD’s believe that Lyme never goes away, but with the right treatment plan, you can get rid of symptoms and the disease then goes into remission. The main focus here is getting your symptoms under control and keeping your immune system happy so you can remain symptom free.
It is nearly impossible to kill every little spirochete in your body, especially having chronic Lyme. Yes, it is true that many people do recover (at least symptom wise) with the short protocol, if you immediately noticed a bulls-eye rash (which is very lucky if you have one), or their Doctor happened figured it out right away.
Once the bacteria has been in your body for months, or years upon years, as many have experienced, the bacteria likes to get deep into all your tissues, your organs, your brain… everything. That is one reason why it is so hard to kill, other than the fact the little buggers are extremely smart and turn into biofilm and cyst forms to prevent attack.
An article was published in The Journal of Clinical Investigation about their research on mice and Lyme disease, that while antibiotics cured the infection, spirochetes antigens were found in areas adjacent to cartilage which is a condition that can cause swelling. Researcher, Brian Fallon, a Columbian psychiatrist who focused on primates found metabolic abnormalities continuing on in brains of patients with confirmed cases of Lyme, chronic, and post-treatment compared to healthy test subjects. This should tell you that it is probable the disease does not go away completely.
Fortunately, the Lyme bacteria is extremely slow growing. In fact, most bacteria types can be killed with 10-14 days of antibiotics. Lyme on the other hand, has a 4 week cycle. so, essentially, not knowing when it is going to grow, it is even harder as you have slim chances of killing the buggers each time around, and is why longer treatment is required as you have such a short window to attack. But, once you reach a symptom free or nearly symptom free state, it is likely that you still have the borellia burgdorferi bacteria inside you. Slowly and slowly reproducing. But once you get into that state of remission, you could quite possibly stay in remission, especially if your immune system is happy (all us chronics have an array of immune deficiencies).
If you get bit again by another tick, it is not necessarily “reinfecting yourself”. You are likely feeling the same symptoms you did or even more, possibly were infected with another strain of the disease as there over 100 in the U.S. alone, and let’s not forget about co-infections. You might have just had Lyme disease before, but the next tick gives you a plethora of symptoms because you might have just added Bartonella, Babesia, or several of the other co-infections to the mix.
I went researching on Igenex to see if there was any more light to the subject.They have a past and previous part of their test, IgG and IgM but said depending on how long you have had the disease and also depending on if your body is making antibodies to the bacteria or not plays a part in if anything will show up at all on the tests among many other factors. Poop. So not a huge help… then I went to ILADS website to see if I could delve some more…. and I had much better luck 😉
ILADS, International Lyme and Associated Diseases Society states, “Many patients with chronic Lyme disease require prolonged treatment until the patient is symptom -free. Relapses occur and retreatment may be required. There are no tests to currently available to prove that the organism is eradicated or that the patient with chronic Lyme is cured.“
And then I lastly stumbled upon Lyme Info, which states that there is no established cure for Lyme disease.
So there you have it folks! Would have to agree with the LLMD’s and ILADS. The ultimate goal here is remission, not a cure. Fight and fight hard to get there, continue to keep your immune system happy, and hope like hell you will stay that way.. symptom free. 🙂
http://www.cdc.com, http://www.healthboards.com, leaparizona.com, igenex.com, newyorker.com, ILADS.com, http://articles.mercola.com (Dr. Klinghardt article), lymeinfo.net
kimmiecakeskickslyme 
Great post! Very informative… (RainbowHope from MDJunction)
Thank you!
Keep up the posts facinating reading, you may have a hard time doing many things these days Kim but writing your thoughts makes for interesting & enlightening reading…
Thanks De 🙂
What you have wrote here is just amazing, it really sums up the disease very well, and it very informative for people not totally familar with Lyme Disease.Im on a course of iv antibiotic and yes, you do know when you haved reached a life cycle and are killing off the bacteria, as you feel the effects of the die off, and each month you hope to kill off more and more till have very little spirochetes and then hopefully your immune system can keep it at bay, with the help of supplements and eating well and getting sleep etc, but there is always the threat your immune system could be down and it could reappear. Once again this was a great article, one of the best ive read.
Thank you! Glad you enjoyed 🙂
02/14/15 My son was infected May 2014. He had his wisdom teeth extracted a week ago; the very next day he had three bulls eyes. Pediatrician is treating him with two weeks of Doxy. Two bulls eyes have faded, one is still faintly there. I am scared two weeks is not enough. This is such a mysterious and individual disease… should he be seeing an immunologist? Has your research said much about seeing an immunologist?
I have never seen one. Might be worth a shot, but keep in mind many Dr’s aren’t open to Lyme.
My husband contracted Lyme disease in late 1995, sought medical treatment 1 day after the tick was noticed and removed,at our local hospital for 3 days with IV antibiotics. 19 years later he still has problems. Thank you so much for all your research and this info!!!!!!!!!!
You are very welcome!
DOES IT EFFECT YOUR CHEST OR REPOSITORY SYSTEM
It affects everything unfortunately!
I get chest pain and feel like I have more trouble breathing then I used to. I feel like there is fluid in my chest. I have been to the doctor for EKG’S he found that the tissues around my heart where inflamed at the time from disease and put me on a NSAID the pain comes and goes. It all started with my Lyme.
It happens unfortunately. I would maybe push for an x-ray. Mycoplasmas are common with those with Lyme (pneumonias).
If you find a bite or think you might have Lyme you should fine an ILADs affiliated doctor. If you go to their website you can tell them where you live and they will send you info about who to see. It is all very secretive because the party line is that this is not real and doctors have lost licenses over treating people beyond the ridiculous and useless 3 week protocol. In addition to the antibiotics your doctor will put you on for 6 months to a year, I would add colloidal silver as it kills everything bad and helps regenerate tissue, Serrapeptase as it helps to break down the membrane on the organisms (an hour before the antibiotics), and Banderol, and Samento which are herbal antibiotics. Your doc will also put you on an intense regimen of vitamins and minerals and probiotics to support your body in healing. I use all of these and am beginning to see progress in joints, mood, mental clarity, and energy. Some may be sexually transmittable. Do your research – there’s a fair bit out there. ILADS is the best resource. Good luck!
I was diagnosed with Lyme in September of 2013 I took heavy antibiotics for two months and I seemed to go into remission. My Lyme was discovered right away It was only a month or so from the time I had the rash until I was diagnosed I was hit so hard by it and so sick my whole body kept going into anaphylactic shock basically and the only way I could function for a couple of weeks was if I took a very large amount of Bendryl in the morning. In October of 2013 I was diagnosed with mono on top of everything! Like I said I took a lot of antibiotics and when the doctor said i should be all cured nothing changed and he blamed the mono. The fallowing June I had enough of feeling like a hallow shell. I was aching all the time and tired all the time. Felt feverish and like I was on the verge of having the flu so I saw my doctor again he ran a Lyme tarter on me and said he found nothing. I am fed up! I am 20 years old you can not tell me that normal 20 year old’s feel this way. People tell me to pray harder or eat better or take care of myself. I understand those things are a component but again normal 20 year old’s don’t have there lives completely altered by those things ( I eat better then normal people my age I try to cut out preservatives). My symptoms never fully went away the initial rashes and “allergic reaction” went away but I have felt like this ever since I was diagnosed. I’m not necessarily looking for answers i’m just sharing my particular story and wondering if anyone has experienced something similar. I am told I was treated so early on that there is no way I have chronic Lyme. I know MD’s want numbers and evidence but I don’t need an expensive study to show me what I have been saying for the past year “no body know’s anything about Lyme Disease and in some cases for what ever reason it does not get better because of antibiotics and it never goes away!” I feel like it is eating away at my body and I’m so fed up!!! Has anyone else been going through the same battle? I basically feel like I’m told it’s all in my head and I’m fed up! I have no reason to not want to live a act life in my 20’s I’m furious.
I’m sorry you are dealing with this. I have had issues here and there since childhood but I was your age when I really started to become systematic. I guess my best advice to you is to seek a Lyme literate doctor, they can treat based on clinical diagnosis, and they use a better test (I will say there is no 100% accurate Lyme test), and to cut out gluten and sugar. Take supplements and vitamins to boost your immune system. Ways to find a Lyme literate doctor are possibly joining Facebook groups and having others point you in the right direction, or try the ILADS website. THere should be a link to find a doctor.
Hi Alexandria, I’m a mom/caretaker of my daughter diagnosed in Nov. 2013. Looking back we know she has had Lyme for about 10 years prior to that. She definitely has chronic Lyme and hasn’t been able to tolerate any kind of treatment so far. Kimmie, she is now going to the same Dr. J, that you see. She’ll be going on IV antibiotics soon! Long story, but I want to focus on you Alexandria. First let me say I in no way know what you are going thru! I only see what this is doing to Shaye. Oh how my heart breaks for you precious young girls!! Hearing of your journeys tears me up yet in some way brings comfort. Just knowing we (I say we because that motherly bond perhaps enables me to somewhat feel a depth of suffering I don’t think even a dad could comprehend completely. Not all but some.) But knowing she’s not the only one missing out on what should be the best years of your lives. I’m so so sorry for everything you all are going thru! Please accept my empathy not sympathy. Somehow sympathy correlates to weakness or inability to cope but I know if your fighting this disease the only thing weak about you is your immune system! You are strong fighters to wake up each day and do the best you can to endure another day!! I know you didn’t ask for answers but may I encourage you to seek further ongoing treatment. ILADS can find you a lyme literate doctor I think. I trust everything Kimmie puts on here as I’ve done extensive research and quite frankly I’m amazed at the amount of good information and links you include in your writing, Kimmie, despite your pain and brain fog and so much more! I really appreciate it as I know others have and will also! Alexandria I encourage you to let your anger out in whatever works for you! Scream, cry, punch a bag or an enemy (just kidding)! When tears come, let them flow! It cleanses the soul and helps one pick up and move forward until the next cleansing is needed. I will pray that you reach a place of peace soon in that it’s not necessarily “yeh no problem, I’m fine, lyme is nothing”, but a peace that is somewhat like resolve or acceptance that allows you to move forward into the next stage of what I call grief. I mean Lyme robs you of your old life and nothing can prepare you of the realities presented to you now! If you are like my Shaye, it’s a roller coaster of emotion and strength as well as all the rest of the junk. You sound like a fighter full of anger and I believe when that anger is replaced with resolve you will be just as strong as you were angry and better able to fight even harder to beat this wretched disease! Just like the death of someone you love, grieving takes time and there are stages. Do it your way, be good to YOU, and know that others are in this fight with you. Reach out just like you have done here and I pray you all find strength and courage from one another! Godspeed to healing! : )
Thank you! And thank you for the empathy comment. I totally agree. I do not want sympathy, or for people to ever feel sorry for me. I want people to learn. I send my wishes to your daughter. I know you are seeing the wonderful Dr J (and he really is), but know it takes an army to get where you need to be. I see several other doctors, and try not to mention Lyme. Focus on the symptoms, not the cause. As you know Lyme causes a hell of a lot of problems but treating individual symptoms and getting opinions is a good thing. I love my naturopath, and he has actually spoken to Dr J about me and my case, prior to my first visit. It is great to have my team 🙂 Once again, good luck, stay strong, and know that patience is a virtue lol (I have trouble with this one).
I got lyme month ago from an infected tick or spider bite (they couldn’t tell from the appearance). My spinal tap was clear but other symptoms and blood tests indicated tick disease: rashes, high fever, flu like, headaches, joint pain, muscle pain, neuropathy–hot and cold water felt extra hot and extra cold, fatigue, no appetite, “bite site” with a central necrosis, round pink area and an outer dark pink band and broken up spread of infected pink swellings in the form of small dots and worm like shapes. They tried sulfa bactrin first and I got REALLY SICK (no appetite, rashes all over, severe fever, nausea, and severe diarrhea). My husband in alarm took me back to urgent care and they referred me to infectious diseases and I had a spinal tap the same day that was clear but blood tests revealed I had low blood counts. I was taken off sulfa bactrin, and put on doxy-cycline and immediately improved, then slowly got better over a two week period. My blood counts are up and I feel better and the wound site dropped out its necrosis, quit spreading and is now drying up. There were some things I noted that might help future sufferers: 1. MAKE SURE YOU”RE NOT ALLERGIC TO SULFA BACTRIN! they’re not sure, but it’s likely I am because I GOT WORSE after three days of sulfa bactrin. 2. Spinal taps are scary and laying on your back for four hours and having to use a bed pan stinks, but it’s the only way they can be sure whether your brain or spinal area is infected and that will determine whether you get a port and every day IV antibiotics or not. If you refuse, you WILL get a central medicine port and will have to go in EVERY DAY for at least TWO WEEKS. 3. DO NOT USE beta iodine to control infection or peroxide. IF you cover it during showers once it starts to heal, make sure you clean if off with 70 perfect isopropyl alcohol immediately afterward, THEN treat it however your doctor advises you. I am not saying this is the only way to treat tick wounds, I just found out that for some strange reason air tight bandages with antibiotic ointment made MY infection spread, and peroxide or beta iodine made the wound worse. Not everyone is like me but this is what happened to ME. Especially when the necrosis is gone and it starts drying out and clearing up, you should avoid applying strong stuff to the skin, keep it airing more often and avoid using an ointment as it needs to stay dry in order to keep drying out and healing. Too much strong stuff will inhibit skin healing. 4. Also eat more eggs, lean meat, and protein while you are recovering if your blood counts are low and drink LOTS of water. With doxy-cycline you need to stay off anti acids (like Tums), mineral supplements (especially calcium, magnesium etc. but you can take vitamins like C), GI tract medicines like Pepsid AC and Pepto Bismal (Simethecone is OK as long as it doesn’t contain calcium), and don’t drink milk within a two hour window of your dosages). I drink my milk in the middle of the day so it doesn’t interfere with my antibiotic. So far I am “healing”, I am not completely free of my disease and it’s been a month. The doc doesn’t want me swimming or bicycling or soaking in a bubble bath until the wound site is completely healed, and I am certainly not going back into woods that aren’t sprayed and NOT without LONG PANTS, socks, good shoes and DEET! My husband use to think I was too nuts when comes to DEET, now he doesn’t say a WORD. 6.. Don’t do heavy exercise the first two weeks, it will aid your infection to spread. Just light, keep wound clean, sterile and dry. Be careful about showers until four weeks are up. Sometimes showering and then cleaning the site afterward is better than taping it up–but if you do, take care of it IMMEDIATELY after your shower to make sure the infection doesn’t spread. You might gain weight or lose some muscle tone and will have to eat more protein and might get a little flabby during recovery–I DID. I am going to start up Pilates or Taebo and other exercises again soon since the necrosis is gone and the bite site is drying up. I am often still sleepy but I have a friend who has chronic lyme and has found strengthening and muscle conditioning very helpful for coping with long term complications.. Now if I could drop those extra 10-15 lbs and build up my muscle again! And hopefully the wound site and scarring goes away soon so I can swim and long distance bicycle again! If anyone is curious, I was bitten and infected in a non DDT sprayed area near Hurley, WI. If you anywhere in the woods or hike in a high grass area, wear long paints, long socks, hiking boots, put on DEET and check yourself CAREFULLY afterward and watch carefully for any evidence of BITES!
Hi I’m Amanda I’m 22 and about 2 months ago I began itching on my scalp the itching went on for about a whole week then finally one day I felt around and found a tick so I removed it and killed it. Within a week I got fever fatigue swollen lymph nodes hive-like rash on my palms arthritis in my hands and feet joint pain chest pains trouble breathing insomnia I told my dr just 2 weeks ago about the bite she told me I tested positive for mono after repeated testing. She received half of my Lyme test on Friday and said my numbers were high but she had to make some calls so I’m not sure if I tested positive but I’ve been on antibiotics since I got sick. I’ve had a cankel sore a yeast infection bladder infection for the past 2 weeks and major migraines since I got sick. most of my symptoms are gone but the arthritis headaches joint pain and neck stiffness come back every other day and my insomnia and fatigue never go away. I’m not sure if mono causes all this but my dr doesn’t seem to believe it could be Lyme and isn’t in much of a hurry to find out she’s positive it’s just the mono. I would like to find out if it is so I could be more at peace I’ve been so stressed over this. Since I got sick I’ve become very forgetful I can’t concentrate and I get frustrated very easily and snap at ppl even for the smallest things and I’ve always been a very calm person with a very good memory now I can’t carry even the slightest conversation with someone because I can’t concentrate and don’t know how to respond so If I’m not making sense I’m sorry.I’m worried I’m a single mother of a one year old and this is all too stressful. These pains come and go every other day and range from mild to severe even to the point where I scream and cry. I can tell when I’m going to have a bad day when I wake up nauseous and sometimes it hits out of nowhere do you think Lyme could be a possibility? Please help.
Hey – I really would encourage you to see a LLMD (Lyme Literate Medical Doctor). I really think it is likely Lyme – Lyme also easily “reactivates” viruses and bacterial infections. I get pneumonia a few times a year! To find a doctor, I encourage you to join a Facebook group for Lyme, tell them where you are from and I am sure someone will be able to message you a doctors name (We kind of keep it on the down low for their protection). MDJunction, a website also might be helpful. I think you will have better luck on FB.
I wrote earlier before the end of my aggressive antibiotic treatment … and I can say now that I feel better than I have in years!
Try to find an infectious diseases clinic and you will be treated for the Lyme properly. Regular doctors just don’t know what they are doing.
It a month now that I have stopped the antibiotics and it only took 2 weeks for the Bell’s Palsy to fade away … each day, I was so much better than the last …. I have had no fatigue or that overwhelmed feeling like I had been living with for over 4 years. After reading all the comments here, I had expected to recover much slower than I have, and I am still waiting for the crash … but so far, nothing…
Sweetheart….my heart goes out to you…22 years ago, my beautiful , strong and active daughter had many many unusual debilitating medical symptoms…with blood work from a lab coming back negative for Lyme disease …it was very frustrating to say the least…but as a very pro-active person as well as a devoted mom, I was not stopping until I got an answer to why my daughter was disintegrating before my eyes….another dr. took blood to retest for Lyme disease as well, but this time test was sent to Stoneybrook Labs for testing…keep in mind, this was 22 years ago, and the knowledge was more limited in scope than presently…however, Eureka!!! This time the test came back High Positive..my daughters dr. put her on an aggressive( at the time) regimen of treatment…
She started her junior year at University of Wisconsin with a shunt in her arm…she was taught how to administer the IV antibiotic
Rocephin herself, with a home- nurse coming to her weekly to check her blood levels…this aggressive IV treatment was considered very radical at the time, as most treatments were oral antibiotics..but this dr. was not a fan of that protocol as it did not effectively kill all the bacterias….other than my daughter being in the 20% that gets gallstones from the rocephin , she responded very well to the aggressive IV protocol of treatment which I believe went on for at least 6 weeks…maybe this is something that you should try as well…oral antibiotic treatment for these sturdy bacterias is probably not enough to help much, even though lots of doctors still believe in it..
I just wanted to share my experience re my daughter with you in the hopes that maybe it can help you as well…
God bless..
Thank you 🙂
Ok thank you so much for the team approach information. Having Dr. J I just assumed he was all we needed along with her family doctor. May I ask what sort of things we should see the Naturopath for? She was seeing a functional medicine doctor first but her gut just wouldn’t allow oral antibiotics so we switched to Dr. J. Feel free to email me if you’d rather. And again, thank you so very much for your blog! You’re an angel!
Kimmie thank you for all the wonderful information. My husband was recently diagnosed with chronic Lyme and was diagnosed a few years back with heart failure (never found the cause for the heart failure but we now think it is because of the lyme). He just got of doing the antibiotic treatment. The first few days he was doing great and now the symptoms are returning (feverish, clammy, headache, tired, tremors, heart palpations). He went to the infectious disease doctor yesteday who told him to give it a few more weeks but feels the antibiotics worked. He is discouraged and feels defeated. We have an appointment next week with an LLMD and are hoping to get answers. Can I ask why you mention to cut out gluten and sugar? Thank You again and prayers to everyone on here.
Hey! Sorry your hubby is going through all of this. Wishing him the best at his appointment. It is really important to cut gluten and sugar because of yeast. Antibiotics cause candida (yeast overgrowth), and they feed on sugar and gluten. Check out my post in the search engine on my blog, I think it is called the Lyme diet.. or something like that, for more info 😉
All these comments are so wonderful …. and are helping me understand a little more about this disease, which so many doctors know very little about.
About a month ago I was bitten by something, which doctors now say was a tic … it became a huge infection and I was treated with antibiotics for insect bites. After the 7 days, I felt wonderful … for exactly 5 days and then I woke up to horrible pain all over my body, including the stiff neck and wicked headache. After seeing 3 doctors who couldn’t believe it was lyme, I went to the infectious diseases clinic at a major hospital, where they immediately said this was classic Lyme. The day I went, was when I woke up to Bell’s Palsy! The doctor said I would be put on an aggressive intravenous antibiotic treatment for 14 days, and then all will be gone. I am on day 10 of that treatment, and I can say that I too felt better after 3-4 days, but now each day has me feeling a little bit worse. That roller-coaster of different sensations – sweaty, hot, cold, shivers, dry mouth, runny nose, and then a normal state, until it all starts again,- I am feeling that at a low level. Nothing like when I wasn’t on antibiotics, but every day, I wake up with a little more pain. The doctor said that was all normal, and I would be back to my old self after the treatment…shouldn’t I be feeling better and better while on the treatment???
Four years ago, I woke up to a strange bite on my thigh with a clear bull’s eye, but no pain. I did not know at the time that that was a sign of lyme disease …. now I think that the bacteria has been dormant in my body for that long and errupted with another tick bite 5 weeks ago. The doctor doesn’t seem to think so, but how else could I have reached this later stage of Lyme disease?
I am a very health conscious person and yet, have been complaining of chronic fatigue for many years. I have also been receiving IV vitamin treatments and recently, ozone and UV irradiated IV treatments which make all pain go away for about a month … I wonder if those treatments have kept the lyme at bay? Unfortunately I have to travel quite a distance to this particular doctor.
Thank you for this wonderful forum.
You might not necessarily feel better while treating. All the die off killing the bugs, plus a lot of medications can make you feel pretty cruddy. Wishing you the best of luck!
Good evening, after reading the comment and reply about Lyme ever going away and the standard treatment of today is 2-4 weeks of antibiotics. Holy hell!!! my husband was diagnosed in 1995 and only received a 3-day course of IV antibiotics!!!! There was not a lot of information at the time and if there had been it was NOT as easily accessible as it is today.
I hope he is doing okay! Sometimes a short course of treatment if caught early is enough to keep people symptom free.
I’ve been look g for some answers maybe someone knows. Waaay back I’m the day I contracted Lyme disease, the kicker is I literally did nothing about it, ever. I lived in New England(CT) at the time so believe me I know I had it. Anyways although I had the bulls-eye my face went numb and some minor things but everything eventually went away. I’ve had tests after tests done and blood work drawn so many times I can’t remember while I was in the army. I’ve been I’m good health according to them and always been in good shape. Was just curious why this is? If it can go away by itself?
If your immune system is working well, you may never show symptoms of Lyme. I know of a woman that tested positive for Lyme, she just took the test because her daughter has it, and has ZERO symptoms. She is not doing treatment because she is not symptomatic.
So, you can have it and feel completely fine. 🙂
Is it possible for lyme disease to kick back in 7 years later? I got a 3 week IV antibiotic treatment back in 2008 for my lyme disease after the bulls eyes appeared everywhere and the joints in my knees affected my walking one night. After the treatment I never experienced symptoms. I recently went through a very stressful period in my life with panic attacks and lots of anxiety. Lately, I’ve been experiencing depersonalization and brain fog. I’ve read a lot about stress causing the lyme to come back. Is this at all possible for the lyme disease to come back after so many years, and could the symptoms be limited to just depersonalization and brain fog?
Absolutely! I would seek out a Lyme literate doctor and tell them what’s going on. Stress and trauma can get it back into gear. Contact ILADS, join mdjunction and search for a doc, or if you ask on Facebook I’m sure someone will p.m. you some doctors. Good luck!
Over seven years ago I was bitten by a tick, no bulls eye. About a week later I became very sick, all the symptoms of Lyme. I tested negative but I begged the dr to please start treatment as though I had it. He listened to me, and a month later my dog was diagnosed with Lyme’s. I told my dr. It is now seven years later and I’m having all the symptoms again. I live in Georgia but the doctors here aren’t acknowledging Lyme’s. Four other people in a two mile radius of where I live also have Lyme’s, one is a doctor. Whether a test reveals you have Lyme’s or not, fight for treatment. Today I’m very sick and I know in my body all the symptoms have returned. Lyme’s does leave reoccurring attacks on our bodies. If only the doctors would listen to us when we try to tell them something is wrong even if Lyme’s doesn’t show up on the test.
Firstly I want to thank you for this amazing article .my friend was diagnosed with a severe case of lyme 9 or 10 months after having it and he was beddreiden for almost 6 months do u think that with treatment and rest he would be okay again and make a 100% recovery ? And how long do you think it’s gonna take ? And after the person reaches remisson will that person be 100% recoverd and get thier energy back and be 100% symptoms free forever or they will still be sick and have symptoms even after reaching remisson ? All the articles I read say that after u have lyme u can never ever be 100% recoverd & that made really sad so please can u answer my questions ? Thank u
Hey there! A person can definitely go back to 100%. Unfortunately, due to the extreme severity of my symptoms I know I will never be the same again, but I am hopeful I will be able to live a much better life again. Don’t lose hope!
As for how long it takes, that really depends on a lot of factors. Immune system, deficiencies (Check out my “Common Abnormalities of Lyme Disease” article), coinfections, etc etc etc. I know people that have gotten better rather quickly. I am now about 3 years into it. It sounds bad, but if you saw the About Me video, I am not nearly as bad, most days I can go most of the day without an episode, and I do not have to fully rely on a wheelchair anymore.
It also depends on finding the right treatment for you. Everyone is different. My best suggestion IMO, is to find a doctor that will aggressively treat, all three forms of Lyme (spirochete, biofilm and cyst) at the same time, as well as attack coinfections at the same time. Just my opinion though.
Thank u so much im soo happy i was so worried about my friend I thought he will be sick and tried and have to live with these symptoms forever . I wish u get better soon 🙂
Hello. I have been just diagnosed with Lyme disease. I had a tickbite in Finland on july 18th. 7 days after the tickbite I had several symptoms like dizzyness, exhaustion, shaking body, having hot and cold without having a fever. I went to the hospital in Turku and they did a test for Lyme disease (blood test). This came out negative. I went on with my journey while still feeling unexplainably ill. When, after some weeks, I was back in Belgium, I woke up at night alot and had to go to the toilet 10 times/night. I felt there just had to be something wrong so I went to the hospital again. They did the same tests, which came out as negative again. They couldn’t explain why I was feeling so ill. Weeks went on and I kept on feeling worse. I began to hyperventilate alot and became a bit hypochondric because I felt there was something wrong but nobody could explain what. 4 september I want to a hospital for the 4th time when I hadn’t slept for a week. They diagnosed me with psychosomatic complaints. I thought they knew what they were doing so I underwent a 5 week hospitalization in psychiatry. In that time my sleep disorder became worse so they put me on sleeping medication, which didn’t help. My body just didn’t want to get to sleep (in periods of a little stress I still cannot sleep). Now in november I want to a doctor that is highly literate in all kinds of stuff. She did the Lyme test again together with a checkup of my adrenal glands. Adrenal glands were okay, but I had a slighly positive test for Lyme disease (4months after the tickbite). Now it’s possible I heard that neuroborreliosis can cause sleep deprivation. I can tell you this ain’t life. There is nothing worse than not being able to sleep for a week. Now I’m in search for some answers since the doctors never gave me the treatment i had to have. Is this still fully curable or will i be having this in my body for the rest of my life? Will my sleep be recovered once I’m on antibiotics? What is the best treatment for me at this point? I just want my life back..
I would talk to someone about sleep issues, maybe get Cortisol testing done? You should have your doc treat the symptoms as well as kill the bugs. It will be in your body forever, but you can get completely symptom free and in remission, never to look back at this all ever again 🙂 good luck to you
erv in wisconsin;;;;;; hello,, i’ve read your post , to me it seems a bit confusing,,,you see at this time i am going through my 5th ,, yes my 5th battle with lymes in the past 18 years , you see around june or so i started getting very sluggish, very tired, very sore knees , out of breath, ,, i just took it as i was out of shape , seeing i was in the woods again most every day,, i had pick many ticks off, but had not noticed any bullseye or rashes, around september i found a rash on my leg , then in early october i had a tick on me when i got home and the bullseye was already full,,, i went in and they started me on cefuroxime…30 days of that ,but was not getting better ,, after another blood draw nothing chaged ,, then they started me on doxcy for 30 days about half way through this one i started with tremors, my train of thought was going to poop, hot, cold , chest pain, and the worst headaches i’ve ever had in my life,, early january the DR. took me off of any work, now i just got done with 33 days of iv treatment with the pic line,,, the DR. wanted to continue the iv treatment but now the insurance is telling everyone to stop the iv treatments,,, even though i still have tremors, knee and joint pain, chest pains and severe headaches ,, now they took more blood to run more test ,,, gave me a bottle of indomethacin, for the headaches but they aren’t touching them at all,,,, at this point i will take any advise ,,, can you tell me how long after all these treatments before headaches and everything will go away,,, please email me with anything that you can think of to try next,,, thank you
Hey! Post here your email address and I will email you, I will delete it as soon as I get it, and I will gladly try to help!
As for how long… there is really no way of telling. I know people that have gotten much better in 6 months, I have been at it hard for 3 1/2 years, even some for 10 years! There is no set date for getting well, unfortunately. It is all about finding the right treatment plan that works for you.
I had Lyme disease 3 years ago still h ave stiff muscles fatigue all the time I tell the doctor’s they say it goes away never felt bad tell this happen to me so I just pray to the lord
I would advise you to find a Lyme literate doctor. Lyme does not go away. You are looking for remission, and it sounds like you are not quite there yet. Good luck!
I’ve had Lyme for 22 years (since 1994) and this is one of the most informative websites that I’ve read and I’ve read a lot! I wasn’t diagnosed until 2005 and then not treated until close to 2006. Original LLMD put me on doxy but he was four hours away, gave me a name in NJ (where I was living at the time). She switched it to Zithromax, Spectracef, Suprax, added Abilify and other meds. Sold me a whole bunch of her supplements (which she I’m sure made a hugh profit from), insisted on Vitamin infusions, certain juices sent to me by mail, etc. Must have spent close to $10,000 with her. In between seeing her, I saw an infectious disease MD in Staten Island NY who kept switching me back to doxy and who tested me for everything under the sun. Not only did I have Lyme, I had mycoplasma fermentans and pneumoniae, bartonella henselae IgG and bartonella quintana IgG and who knows what else. Was bitten a total of three times. Very paranoid of the grass. Last treatment was an IV for 2 1/2 months with pic line. I was approved for Rocephin and again she switched it back to Zithromax. I finished that in December 2009 and moved to SW FL Jan 2010. Tried to kill myself almost immediately (within three months). Moved down at 48 years old, newly divorced, didn’t know anyone, etc. Loved the weather and the MD had actually suggested that it would be a better climate for me. For about 1 year I felt on top of the world. At about year 2 I started to drag. By year 3 I was spiralling downhill. Presently, I’m having all of the same symptoms over again – fatigue, parasthesia, vertigo, memory loss, pain, blacking out, can’t get out of bed, nausea, migraines that never go away, extreme pain, etc. Went to ER today and I knew more about Lyme than ER MD. Do you think this is still Lyme and co-infection? The MDs say I’m a complicated case and really don’t know what to do with me. However, I keep getting worse. Getting over pneumonia that I haven’t had for about 8 years. Cefdinir 300mg twice daily. I believe causing a herx reaction since I became deathly ill at day 4 of taking. Please advise! I need help.
Thank you for your time.
I do believe it is all the same.
my only experience with lyme disease was 23 years ago with my daughter
who was 20 years old at the time..i had found a very progressive doctor ..he put my daughter
on IV Rochephin for 6 weeks i believe..he was not a fan then of the oral antibiotics as he felt they failed
to do the correct job in eradicating the lyme disease..Thank God, the IV Rochephin accomplished what
the doctor said it would…maybe it is something for you or anyone else out there who is still suffering to
consider good luck L.Lenza
I had Lyme disease for a few years before I was tested for it. I was living in NC and the dr. Said it was the wrong time of the year for ticks. I told him I had the disease for a few years. He reluctantly did the test and it came back positive. He put me on antibiotics and I would throw up so he gave me nausea pills to take before I took the antibiotic. This was in 1997. Then a couple of months later I had gotten bit again so I went to the doctor he wasn’t the one I saw the first time and asked to be put on antibiotics. He wouldn’t do it cause he said I had to have a blood test and I had read about people who took 60 blood tests before they tested positive. I knew it was positive because I had the bulls eye rash. He called a few days later frantic and tells me I need to come in immediately cause it came back positive. Doctors just don’t know how to treat it especially if you’ve had it for a long period of time. Then in 2004 I was running a very high fever and was admitted to the hospital and they didn’t know what it was but the doctor told me he had to treat the infection radically so they hooked me up with five different antibiotics and took almost a week before my temperature came down. It’s so frustrating to have this disease and not being treated for it correctly and I was living in WV at that time. You look up Lyme disease and it’s not even listed NC or WV. I still suffer from the disease and the doctors here don’t have a clue about how to treat Lyme disease and I still suffer with it and it is slowly killing me. I’ve had it for 20 some years. When I was in NC they asked me to go to the health department and sign up that I had Lyme disease.
There are so many symptoms with this disease pain, nauseous, nervous system, depression and you can’t do what you’ve always done and I asked if when you get bitten again does it make it worse and I was told you get a different strain of Lyme disease and I’ve been bitten so many times I couldn’t even tell you how many so I have a whole body of different strains of this disease.
Well written, and as a past infected recipient of this diabolicle illness, I suifered for years, lethargy, confusion which lead to depression. Under control at this time but I have a fear the spirochytes are laying in wait, for an opportunity (yes, opportunistic organisms) to reinfect. Excercise, diet awareness and a strong will to live are all the essentials to beat the ugliness.
How can I treat myself since my doctor doesn’t know anything about this
Hey! Sorry I am really behind. There are a lot of great support groups on FB, a lot of people go the herbal route.. Buhner etc
Over a year ago, I tested positive for Lyme, and my PCP doctor said they were acute cases, not chronic. He gave me three courses of Doxy. 10 days is recommended, but I talked him into 2-3 weeks. The last time, I had Doxy for my pets on hand and extended treatment myself to 5 weeks. The AMA and the CDC do not recognize chronic Lyme; I believe there is not even a diagnostic code for chronic Lyme. I recently saw a LLMD, and a Western Blot test said I am negative now. I still suffer from extreme fatigue and a lot of joint pain. Is that the end? Do I just have the symptoms poorly treated? I can get no relief from the pain, due to the current opioid crises, nothing for the fatigue. I take 400 mg of caffeine first thing when I wake up. Are Babeosis or Epstein-Barr possibilities? I asked my PCP for tests for these, and he said to have them done by my Rheumatologist. The LLMD does not want to see me since I was negative the last test. I used to be a very healthy, strong woman. In a few years, I’ve suddenly become almost crippled at 71.
What a wonderful site. I must go back now and read all the postings. So informative. Thank you so much.
I tested three times for Lyme.
❤ everyone is very different. that treatment isn't nearly enough though. Co infections are definitely possible! I would search for a Lyme doc, IDADS is a great research or FB support groups…
I will tell you though… all LLMDS are not created equal. One that says you don't because of a negative test (I;d have to see it.. could have positive bands.. ALWAYS get your labs in hand).. anyway.. Lyme is CLINICAL.
Wishing you all the best, I know it has been awhile but hope you found someone to help!!!!
Hi – I hope my reply can help you somewhat…
My only experience with Lyme disease was 24 years ago when my daughter was entering her junior year of college…one lab had her blood work tested negative, whereas the lab at Stoneybrook, Long Island tested her as ” high positive”… so much for lab accuracy..
Also…24 years ago, I was so very lucky to have a great doctor at the time who was quite savvy on the Lyme disease subject and did NOT believe much in the oral version of the
Antibiotics used to treat, as they so often did not work in the long run..therefore he had my beautiful daughter on IV Rocephin RX …this was extreme at the time..but it worked!!!!
She has never thank God had a recurrence of Lyme..she had been very very ill before we had it diagnosed correctly several months after onset of her symptoms back then..
So
I think I gave you some things to think about..maybe it’s time to find a more sophisticated dr who is up on Lyme disease and knows best way to treat …your oral antibiotics in my opinion did not do the trick..if it was me..I would act NOW as the longer you wait the harder it is to rid yourself long term…but I think you are on the correct track now..at least you are aware now that there are more avenues you must check into..
Good luck with this..most important is to get yourself the best best dr for this condition so you can get rid of it forever hopefully..
Lynda
I agree,,,1st the cdc should be sued,,along w/klondyn and friedmen for this willfull torture and genocide onto THE MEDICALLY ILL ,,all who deal w/physical pain everday and now whom have had there medicine denied access to…TRUST NOTHING OUT OF THE CDC,,,THEIR BOUGHT AND PAID FOR!!! BOTH KLONDYN AND FREIDMEN,,IE CEO’S OF THE CDC OWN ALL THEE ADDICTION CENTERS IN THE U.S.A.,,,,IE PHOENIX HOUSES ETC.
I just came back from my Doc appt…knee doc,,I have severe back/pancrease issue also,,,but,,this doc tells me I need to get tested again for Lymes in my system..I was one of those who had thee HUGE BULLSYEYE,,,,WENT TO E.R. FOR MY HEAD WOULD NOT STOP POUNDING,,FLUNKED EVERY MANUAL BRAIN TEST THEY GAVE ME,, but anywho,,my primary immediately gave the course of antibiotic,,and said I was cured,,Soooo why is this knee doc telling me,,,my Lyme has probably come back??3 shots of cortisone in this right knee,,still looks like a football,,what knee??,,I never knew lyme comes and goes,,,,,
It surely does unfortunately.
Thank you for your research, I agree
that we may always carry the Lyme, but
I’m going to try my hardest to keep this
At bay with all the options I can.
I was diagnosed in summer of 2015, given
3 weeks of doxycycline antibiotics. I had
Heard from others, not the Dr., To replenish
my gut with probiotics, because of this drug
killed your All your bacteria in your system.
So, like most people, after treatment I thought I was cured.
This year I started experiencing chronic fatigue
Heart palpitations, anxious, high blood pressure, hypo thyroid, achey, migraines,
Weight gain, and a nodule on my thyroid that grew from
1cc to 4cc ( size of shelled walnut) my MD
Just wanted to do order general tests, heart
Moniture and ordered a needle biopsi of nodule. I felt as though she thought I was
Acting like a hypochondriac with all my symptoms🤔. I mean how could this healthy
Person on no meds, All of sudden, become
A basket case? So I decided to go to an endocrinologist for the biopsi; and in passing
I mentioned that I felt tired, like I did ‘when I had Lyme”. Thankfully this Dr. Knew a little something about Lyme disease, enough to advise me to get retested.I was shocked he could ‘think’ I could get Lyme again?!
He said ” listen Lyme is Very Complex, and even more Tricky to treat; and if you have Lyme; this is All your symptoms!”
Sure enough, another disgnoise: ‘Acute, early onset of Lyme disease’. With a new script for 21 days of doxcycoline.
At this moment, I’m wondering : is this a new
Case or have I relapsed, or not cured like I was
Told?. Hmm…. I knew I had to research and be
And take control of my own health. So presently I am taking the antibiotics along with
High quality Probiotics, herbs, immune, and supplements. Doing light movements to get the limpnoid system going, and positively no sugar ( Lyme, like cancer live off sugar)
No gluten or dairy ( causes inflammation)
Thanks to this link I’m going to share, I’m feeling so much better ( tons of great info) and very optimistic
I think if we can bring our body’s back to an alkaline
state with strong immune; maybe at least we can be proactive in being symptom free. With that said, doing this will set a hostile envirement for this, and candid
And they will vacate our bodies.
I really hope this will be helpful in your journeys to healing yourself. https://youtu.be/WlQukRz_Rj8
https://www.google.com/amp/s/draxe.com/natural-strategies-to-cure-lyme-disease/amp/
This was my story almost to a T … I thought I had Lyme for a number of years, and then in 2015 it all came out in a big way. It took 5 doctors, a round of antibiotics that did not work, a month of flu like symptoms, all the way to the Bell’s Palsy symptom before I was sent to infectious diseases at a hospital. I was treated for 2 weeks with the strongest IV antibiotics, felt really sick during the treatment, as I was warned I would, but the day after I stopped the antibiotics, I felt wonderful. Until 2016. All the symptoms described above … I do have a thyroid issue but the meds that I had been taking for 10 years were all of a sudden not working and I thought some of what you described was due to overdose of thyroid meds. I am feeling better on Naturthroid now, but I should check out Lyme again. I get IV ozone treatments in California, which really has helped, except for the last 2 times when it didn’t seem to make a difference. Thank you for reminding me that Lyme could indeed be the root of my chronic fatigue.
I’m reading the comments on this site for the first time, feeling a combination of deep sympathy and sadness for those of us that have been dealt this hand. I was infected in June 2009 and was immediately diagnosed and treated by my husband. He is now a Lyme literate MD and has been very helpful in assisting me with treatment over the last 8 years. Very often, I am free of symptoms, and live a very active life. Now is not one of those times. Soon, I’ll be going back on a two-week combo plate of Flagyl, Biaxcin and Plaquenil, the first time I’ve used antibiotics since 2013. But, I’m not recommending anything because, after speaking with hundreds of MDs and their patients over the years, every Lyme patient needs their own special sauce. My regular “sauce” consists of daily naps, Glutathione and CytoQuel, both by Researched Nutritionals. So, I guess I am making a recommendation after all…reach out to Researched Nutritionals for Glutathione and other support to strengthen your immune system. I believe strongly that their Liposomal Glutathione has given me months of symptom free living…and during the last 8 years I’ve taken almost every antibiotic used for Lyme, even IVs for a time. The Flagyl is a cyst buster that I want to take again because that, in combination with antibiotics, really resulted in a long remission. Once I’m finished with the meds, I’ll go right back to the supplements. I should hasten to add that I have no financial interest in Researched Nutritionals…I pay for it like everyone else, but their products are used successfully by many Lyme patients. I no longer believe that I will ever be rid of the spirochetes in my blood…I’ll simply continue to strengthen my immune system to overpower their reign of terror.
My best to you all.
Thanks for the the info. My son was diagnosed with Lyme disease September 2017
He is only 15 years n is a very active young man. He was diagnosed within weeks of being bitten. So we think. He never had a rash or bullseye. Just major joint pain. Anyway he did 21 days of antibiotics. He believes he is better but says that he still feels tired n kowns that it’s still in his body. As a parent I have told him nothing. It’s his body n he knows how
To feel at this age. Like other drs his pediatrician said he was cured and it will never come back. But like you all here. I believe it will always study with him.
Thanks for the info n we will look for natural ways on build up his immune system
Hi
How are you now?
I hope well
Still plugging away! I think I am going in a positive direction though, which is great!
I was misdiagnosed for years, until I found an LLMD (angel).
8 1/2 years of hell, I have been in “remission” for 4 years. And now experiencing the familiar brain fog, lethargy, and I am scared.
I moved far away from my LLMD who cured me (or helped me to remission for 4 years) and now I am experiencing brain fog, difficulties communicating, confusion, no appetite, severe ear ringing… and I am scared. I don’t want Lyme to come back (it was chronic), and is there any way I can help prevent becoming ill and having to go back to Pic Line? Anything homeopathic that may help me ? Thank you!!
Maybe join an herbal group on FB if you arent up for antibiotics? I know there is the Cowden, Zhang, and Buhner protocols that are herbals that people seem to benefit from
I had lyme in 2009 wasn’t diagnosed fpr about six months since then have had both knees replaced, trouble with my back and shoulder problems almost every major joint in my body everyone thinks that I enjoy having surgery ir taking time off work, I think it is the lyme everyone says no I think it stays in your body slowly causing problems .
It does stay in your body. People reach remission, but it is still technically always there, and you can come out of remission. I would maybe talk to a Lyme literate doctor and get their opinion on it.