Stopped antibiotic, symptoms, scared, need guidance/wisdom badly

Hi, I haven't posted on here in quite some time. I don't know if anyone will remember me or if anyone can give me some guidance. I have basically been taking amoxicillin 500 mg 3xs a day since August. I'm seeing a LLMD. I'm breastfeeding my son so not many options. Well despite giving my son a probiotic and despite taking one myself, my son was having digestive issues and I have been having severe bloating for two months. It's very uncomfortable. I also started getting horrible nausea a little over a week ago. I am waiting to see my GI doctor to make sure it's nothing to do with my ongoing cholestasis that I've had since my pregnancy with my son but my appointment isn't until January. I am waiting to see my LLMD (in about a week). I had a phone consult with him and told him about the horrible bloating and he said I could try taking two days off the amoxicillin. I decided to go for it. I immediately noticed that I felt much better than I've been feeling - like I felt almost normal for those first two days. After reading in online groups I have decided I don't believe that antibiotics truly take care of chronic Lyme. I've met three people who had IV antibiotics, and who cannot stop taking antibiotics or their symptoms just come back. I've also read of the same thing happening to many others in forums and online groups. I do not want to take antibiotics for the rest of my life. I already can't handle the changes it's done to my gut. I decided to try not to take the amoxicillin. Before stopping the amoxicillin I was not symptom free & was actually still having low grade fevers (I believe I was actually herxing almost all of the time), but I was back to being functional. I was still having rotating symptoms and random pain (like joint pain in my right knee or pain in my fingers and toes) that would come and go for hours or days. After stopping, my symptoms have been increasing. They come in these horrible, random, powerful waves, like someone is suddenly turning them up as though turning up a volume knob on a radio. Is a wave-like pattern normal for Lyme? I get moments where I feel almost completely normal despite having pain, just like my old self but not symptom free because I always have some pain or tingly numbness. Right now I have a new cold patch on the bottom of my right foot, tingly-numb left thumb, horrible exhaustion, depression, anxiety, bone pain at top of left shin, pain in the back of my left thigh, feeling like I'm going to lose my mind, pain at the top of my left foot (which had previously been totally numb for quite some time but then become painful and then was pain and numbness free with full feeling while taking the amoxicillin), persistent nerve pain in my upper right middle incisor, blurry vision, weakness/feeling unwell, tightness in my throat, weird sensations/smells in my nose, suddenly feeling (but not expressing) anger at family members who have not been understanding what I'm going through or who have been unkind to myself or my son or husband, OCD type things, and more. It all comes in these waves on and off but seems to be getting worse/stronger. I don't want to just go back on the amoxicillin as my gut wasn't tolerating it and I just don't feel it is the answer. Is this normal for someone stopping antibiotic treatment? Does this sound like chronic Lyme? Am I a hopeless case? Will I ever be able to feel completely like my old self again? Could any of this be explained by candida overgrowth or something else? Earlier today I had a horrible couple of hours where I felt tightness in my throat, depression, fear, a sense of this horrible unwellness in my body, almost a panicky fear, and could not concentrate on anything else but what on earth was going on with me and just feeling so scared about it. It faded away and I feel fine now except for my tingly-numb left thumb, cold patch now behind my left knee (it had been there before too but went away on amoxicillin), and exhaustion. If any of you have tried stopping your antibiotic like I am, can you tell me if this all will only get worse? Or could it just go away since I am having moments and hours where I feel almost like my old self again about 4-5 years ago? What do you make of these bizarre and scary horrible waves? I also had one earlier too but with different symptoms - is it normal for the symptoms to change and rotate and also be almost barely there at times? I get them it seems a few times a day ever since stopping the amoxicillin. Is this all just permanent damage? Or could it be like how most doctors and the CDC say when you stop antibiotics you will still be having symptoms but they will stop over time? Or could these bugs be like reproducing and coming out of hiding and wreaking havoc on me? Do these symptoms sound normal for Lyme? What about the weird wave-like pattern? I just don't know what to do. The more I read, the more it seems there is no cure for Lyme...Like people get into remission but it comes back...that antibiotics don't cure...I'm so scared!!! I am at a point where I'm scared enough about what I'm experiencing when I'm experiencing it that I'm willing to wean my son and try herbs or really anything to make it stop. And yet there doesn't seem to be anything that can make it stop and give me my life back! Please, anyone who can give me any guidance, please I'm so scared. I don't know what to expect going forward. I can't keep killing my gut taking an antibiotic. And honestly I don't want to live a life dependent on a drug that is only a bandaid and damage my immune system via long term use. I want freedom, I want my health back. The longer I took the antibiotic and the more symptoms are now showing up while I'm off of it, the more I am coming to believe I have had Lyme all along from a tick bite in 2011 which was asymptomatic until I gave birth to my son at which point it began to come out gradually. I feel that then with this summer's new three bites I added more bacteria and potentially other pathogens (I tested positive for RMSF twice, six weeks apart). I mean, is it all hopeless? Can I ever regain good health? I just want to feel well/normal again. I am so sorry this is so long. I am so sorry to be asking for help. I hate being in this position. I absolutely hate it. It's forcing me to make changes and decisions that I would not naturally choose to make and it's just running my life and what I can and can't do. I so wish there was some way to communicate with the bacteria and tell it not to reproduce rather than trying to annihilate it which just seems to cause near intolerable herx suffering (in the beginning) and doesn't actually irradicate it. Please help me if you can. And please forgive me for continuing to come here to ask for help.

Post Edited (H Mommy) : 12/22/2016 10:21:24 PM (GMT-7)

I do remember you, H Mommy. I'm sorry for the reason you are back here.

Take a deep breath. yes, you can get better.

500 mg 3X a day for 4 months isn't adequate treatment...even if you only had lyme for a month or two.
Did your LLMD tell you this would be adequate? I'm thinking this is the dose that he felt would be safe for you to nurse your son, because it's not enough to treat lyme effectively. At best, it would only keep Lyme at bay...but not irradicate it.


You do need to treat - whether it's with a more effective antibiotic protocol...or an herbal protocol.

So, you're son is 3 years old? Are you ready to wean him so you can attack lyme more aggressively and not worry about what is in the breast milk?

I think you need to discuss treatment with your LLMD and do what 's necessary for you to heal.

Please don't apologize about coming here for help...that's what we're all here for - to help and support each other.

THank you so much for the responses.

Yes, I am thinking about weaning him to treat - because even if it's only with herbs I don't want him to get it through my milk.

But I don't understand...why am I feeling almost normal some of the time? And is the wave pattern normal? And is it normal for the symptoms to change? Today again I woke up and I feel almost normal. But I'm just sure that as the day goes on I'll get these horrible scary waves because it's been happening every day.

I just wish I had hindsight and answers in advance. I just want my life back. I just wish I knew what is really happening to me.

Also, yes, I have a LLMD appointment coming up.

Thank you so much again for responding. <3

Post Edited (H Mommy) : 12/23/2016 8:09:44 AM (GMT-7)

When I stop antimicrobials I get dramatically worse and acquire new symptoms that come and go and eventually things calm down. It's kind of like I've angered the bugs, forced them out of hiding and into new places that they inflame until they're back to being settled and discreet. Based on my experience I can't recommend going on and off abx because it makes things worse. Either go the gentle road with herbs or stick it to the end. Sometimes you just have to stop but due to the issues I was having on them I decided I would rather take five years of tonic herbs and detox before trying again if it came down to that. I just find that it's not worth it to aggressively treat without a clear path my body can manage for me. I say it all the time but terrain is so important. Even in acute infections it's often believed the abx only knocks the infection back enough for the immune system to clear. So keeping all aspects of lifestyle in tip top shape, supplementing for inflammation, etc

I hope you feel better though. Coming off antimicrobials is definitely the worst part of this illness for me

Hi H Mommy, I was abx treatment for about a year and a half. I alternated between doxcy, Rifampin Bactrim and then the drugs to treat Babesia. I think my Babesia went away. I used to have low-grade fevers and chills all the time but that has stopped. My LLMD wanted to put me on Levaquin for my Bartonella but the side effects scared the heck out of me, so instead he tried the doxcy and bactrim. It seemed to help for a couple of weeks but then I started with horrible watery diarrhea, so now I'm off abx. While on abx I never really felt much better.

But I did purchase a rife machine. I bought the Spooky2 because it was half the cost of the GB4000. I purchased the Spooky2 Advanced Kit, but you don't need to purchase everything at once. You can add to it incrementally. I think you might be able to find a used one on Ebay. I can honestly say that the rife machine made me feel like I was finally making progress. It can be difficult to understand how to put it together and then how to use it for the illnesses that you have. There is a forum on the Spooky2.com site and facebook groups where you have support. But for someone with lyme brain it is still tough for me. Luckily, my husband was able to figure it out but it's a continuing process of learning how to use it. Right now I only use the remotes, and then at half power, otherwise, I will herx too bad. So it will be a slow process to go thru the entire program. (I'm using the Morgellons&Lyme, Anxiety, and Bartonella) Another thing with the remotes is that you don't have to stay in one place for hours. So you can move about your home. They say it even works long distance, but I'm not sure if I quite believe that. I am very happy with the progress I have made in the last 4 months since I've had the Spooky2. It will also work for more than one person which may be good to do with your son.

I understand how you feel and I think everyone who has this horrible disease goes through it. I find that the days after a few good days are that much worse. Best of luck to you.

Yeah H mommy I'm very biased towards herbs personally. My main experiences were from berberine, cryptolepis and sida acuta. I'm focusing more on tonics now. Knotweed, dan shen, curcumin. Trying to get passed those "blockages" for dabbling in the heavy hitters as that was disastrous for me. I could never get passed a week or two. As for how long to take it... depends on you and your infections. Those who heal can stop. Some heal mostly but find they need one or two herbs to maintain residual symptoms. Few people who successfully treat have to stay on a routine as rigorous as their treatment. It's kind of the point. We are seeking corrective treatment over maintenance drugs to the best of our capacity

Other people with different kinds of bacterial infections that take abx (antibiotics) would benefit from regular de-toxing and organ support. They would feel better during the treatment and heal faster. This isn't an area many Drs. are familiar with or make it a part of their patient treatment orders.

Most of us here that have learned the benefit of certain kinds of de-toxing intend to continue to make this a part of our daily lives forever, because daily we are exposed to viral and bacterial threats, as well as other microorganisms that can put a dent in our health. Our immune systems, particularly as we age, are not as
strong as they used to or could be.

Some times people with strong consitutions are diligent enough in their hygiene, diet and exercise to avoid getting sick. Some of us aren't. So, it's just a basic investment we want to make into our future health.

It's not that it works different for them it's just that their infections are relatively easy to deal with, mostly planktonic in the acute phase. In the acute phase an abx will knock out a large portion of susceptible microorganisms allowing the immune system to mop up the rest. As an infection goes chronic variants multiply, biofilms are formed, coinfections from the oral/gut/air etc can colonize due to aberrant immunity and it becomes very difficult to wipe out an infection with solely antibiotics because the immune system is less likely to pick up persisters, clear biofilms and intracellular forms etc and niches for new colonizers are likely constantly being provided by coinfections. The initial stage of an infection is critical for a microorganism to gain foothold as it has to manipulate many immunological processes to its advantage. But with many chronic infections antibiotics are suppressive at best, simply knocking out a vulnerable population and driving persister formation which has already successfully subverted host immunity. Many infections will become recurrent as those persisters revert. Or the persisters themselves may be pathogenic. Things like acne for example most docs are not dumb enough to tell you diet doesn't matter and you can be on tetracyclines for months without success. Lyme is not unique. People with Lyme just often lack the patience to screw around with primitive approaches because the consequences of sitting on your butt and waiting for a silver bullet cure are so debilitating compared to acne or recurring UTIs or whatever. And other people with debilitating chronic infections often don't even know they're infected because they get diagnosed with things like autoimmune diseases, Alzheimer's or cancer or they're too debilitated to do the research. But the holistic principles that the Lyme community are developing in their search for remission should be refined and adopted for all health conditions. Not simply Lyme. Lyme is an archetype for chronic illness and nothing unique honestly

I am feeling so much worse day by day. Today I am so weak and my husband took our son downstairs and watched him this morning so I could sleep. I am just exhausted. I truly do not believe antibiotics will be the answer for me but I'm feeling so sick today that I'm considering going back on the amoxicillin just so I can be functional. So a temporary thing. What do you all think? I know you're not doctor's and can't give medical advice but I need help. I am so weak and just not feeling well today. It seems every day it's getting worse.

I told my husband I feel similar to when I first started an antibiotic. I actually didn't feel as horribly before antibiotic treatment as I did after I started. Then it was like I got almost deathly ill. I am wondering if taking antibiotics just made everything worse. So I'm scared to go back on amoxicillin but also scared about how sick and non functioning I might become off of treatment.

Post Edited (H Mommy) : 12/24/2016 9:57:46 AM (GMT-7)

Blueberry, did you mean why do I not think antibiotics are an option? If so, I have gotten really bad gut issues on the antibiotic. Despite taking a probiotic. And the more I read the more I keeep seeing that people who take antibiotics seem to never be able to stop taking them. I do not want that for the rest of my life. I've met people who took IV antibiotics and then did oral combinations and they are still taking antibiotics, unable to stop without getting so sick. I read about people saying the same. Even when they do combinations and rotate their antibiotics. So it doesn't seem like it really works.

I know you're right, amoxicillin alone isn't enough but I meant just to tide me over to my LLMD appointment and to wean my son so I could try other treatments like herbs maybe.

Hmommy, here is a helpful thread:

www.healingwell.com/community/default.aspx?f=30&m=3667551

It has a link to the New to Lyme post. I bought the pure Nystatin powder at a compounding pharmacy. It has no sugar or fillers like the standard prescription does.

This info from Pirouette should help.

H mommy,
my daughter was only able to take a mono antibiotic. Any time more than one antibiotic was added she would have really bad reactions, not herxes. Minocycline was the only one she could tolerate. She recently started the Lyme protocol from misty meadows herbals. She has the teasel root, chronic tonic and the Lyme support tea. She is only able to take 2 drops of the teasel root before bed because of a herx from the teasel root which causes sleepiness and drink the tea throughout the day. She has seen dramatic improvement in just a few weeks. She went from not having an appetite to now feeling hungry. She has more energy and I can see a side of her that I have not seen in many years, she is bouncy. She is 20 and we really don't know for sure exactly how long she has had Lyme. She could have had this for 18 years, she was 2 when I saw what looked like ringworm on her cheek and after giving her antifungal crème for nearly a week and no improvement, she ended up having to take Benadryl for a running nose summer time allergy, the very next day the ringworm (or what I thought) was gone. 18 years later she is fighting this. I'm not trying to push you into taking this particular treatment I just know that she had some success with antibiotics but then she stalled and she saw no more improvement, she didn't get worse but she wasn't completely cured. She would have relapses during full moons with some of her old symptoms returning.
I ordered the dry herbs that Traveler used to make her tea. I'm not sure when she will want to start the herbal tea, which has the same ingredients as the chronic tonic. She may want to hold out until she finishes the Lyme protocol from Misty Meadows since she can control her dosages easier.

My daughter had to be taken to our state university hospital last January because she was suffering stroke like symptoms, slurred speech, severe stuttering, anxiety and severe headache. The neurologist said that apparently the Lyme was affecting her brain. this was an extremely scary time for all of us. After this hospital stay she was put on minocycline and her speech improved within a week. If she had not improved she would have had to start IV antibiotics.
Please take care of yourself so you can take care of your little one.

I hope I am not coming across as pushy or that I'm trying to scare you. I just know how serious this can be.