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Posted 12/13/2016 4:27 PM (GMT -5)
Hi guys! I've been diagnosed with Lyme and Babesia (clinically for that co-infection) two years ago. Did a lot of different therapies including antibiotics, antimalerians, herbal tinctures, detoxing, immune system boosting, etc. Before all the treatments I think I was much better off smilewinkgrin. I did start and stop treatments whenever it got too overwhelming. My tolerance for treatments became quite low.

Now I have:
-Muscle/joint pains
-Insomnia
-Nightmares/weird dreams
-Constant waking up
-Anxiety (ugh, the worst!!!)
-Mind chatter
-Chest and solar plexus pain
-Irregular heart beats
-Tingling, prickling, and burning sensation in my arms, shoulders, and chest area (also the worst!!!)
-Heat intolerance (hard to tell now that it is winter)
-Heightened sense of smell and chemical sensitivity (a bit better now that I got rid of all the chemicals in my house)
-Fight or flight mode (a bit better, I don't feel like I am in a drug withdrawal)
-Low tolerance to any supplement I may start
-Lethargy/exhaustion/fatigue (worse than ever)
-Digestive issues

What are these symptoms common to?


I've been doing acupuncture for half a year. Has helped me with my endometriosis, IC, headaches as well. We are going to start a Chinese herb called Lightning Pearls by Classical Pearls, since they seem to address Lyme and co-infections. Hoping to have some breakthrough because it seems like I am getting worse. If two years ago I only experienced symptoms of joint pains and fatigue and IC, here's a whole bouquet of what I have now. Ugh!
Posted 12/13/2016 5:04 PM (GMT -5)
Have you tried treating for Bartonella as I see some symptoms that could be from it. It's quite common when you get bit by an infected tick to have the 3 B's (Borrelia, Babs, Bart).

What antibiotics have you tried over the past 2 years?
Posted 12/13/2016 5:25 PM (GMT -5)

Rikky1 said...
Have you tried treating for Bartonella as I see some symptoms that could be from it. It's quite common when you get bit by an infected tick to have the 3 B's (Borrelia, Babs, Bart).

What antibiotics have you tried over the past 2 years?

My LLMD denies I may have Bartonella, but I feel like it has become active. Fortunately the herbs I'll be taking should capture the three Bs. I have been on doxycycline, clindamycin, and hydroxychloroquine though that is an antimalerian. And A-Bab while it is an herbal. Then did a bunch of things to try to detox and boost my immune system, but all this never directly addressed the main issue. So obviously I got worse.
Posted 12/13/2016 5:33 PM (GMT -5)
I agree with the thought of looking at Bartonella again. When Lyme and Bart collide in the body, most often it means more neuro issues, and you do have a lot of neuro issues. Also, another infection that isn't addressed properly can "hold back" healing from other infections.

Also, have you had a 4 point saliva test for your adrenals recently? You describe some symptoms that may be from adrenal fatigue. My adrenals crashes a few years ago and it's made healing from these infections slow down to the pace of a small ant!

I would also consider that you may not be detoxing well enough for your body. What all do you usually do for detoxing? Most don't do enough (including me) because, well, detoxing all the time isn't exactly 'fun'.

I've considered trying Lightning Pearls too. I've done some reading on them and was intrigued. If you do try them, please do be sure to let us know how it goes!
Posted 12/13/2016 5:39 PM (GMT -5)
Do you take some supplements that can help with your issues?
They cannot heal you, but can help your body.
For example, MSM&Glucosamine are beneficial for joints pain.
Posted 12/13/2016 5:56 PM (GMT -5)

Traveler said...
I agree with the thought of looking at Bartonella again. When Lyme and Bart collide in the body, most often it means more neuro issues, and you do have a lot of neuro issues. Also, another infection that isn't addressed properly can "hold back" healing from other infections.

Also, have you had a 4 point saliva test for your adrenals recently? You describe some symptoms that may be from adrenal fatigue. My adrenals crashes a few years ago and it's made healing from these infections slow down to the pace of a small ant!

I would also consider that you may not be detoxing well enough for your body. What all do you usually do for detoxing? Most don't do enough (including me) because, well, detoxing all the time isn't exactly 'fun'.

I've considered trying Lightning Pearls too. I've done some reading on them and was intrigued. If you do try them, please do be sure to let us know how it goes!

Gosh, you are so right. When a co-infection is involved like Bart, it just makes the recovery all the more difficult. I don't believe Lyme is the biggest issue here, more like the co-infection! I haven't done that test, no. Do you take anything for the adrenals?

Because I have issues detoxing (MTHFR mutation, the worst kind, and other gene mutations), I can't really take or tolerate anything. I do drink lots of water and dry skin brush. I eat well. I do acupuncture for detoxing. So I think it's just a matter of trying out the lightning pearls and hoping that they will help with these issues. Neuro symptoms really suck :(.
Posted 12/13/2016 6:00 PM (GMT -5)

blueberrymuffin said...
Do you take some supplements that can help with your issues?
They cannot heal you, but can help your body.
For example, MSM&Glucosamine are beneficial for joints pain.

Unfortunately cannot tolerate much, but I do take melatonin, valerian root, tart cherry, and temazepam (prescription drug) to calm and help me sleep some before going to bed.
Posted 12/13/2016 6:24 PM (GMT -5)
tepidautumn - welcome to the community. It is so hard to fathom, after all of the approaches, you felt you were better off. Do you happen to have your original symptom list? What cleared up in relation to which approaches? Are the symptoms you list now NEW symptoms or are they a part of the original list. In that you have gone the anti-biotic route, and the herbal route, you might want to consider other techniques that have worked for others. Fever therapy in a controlled setting, and I recently read an amazing blog post about a woman who moved to CA to die, and was stung by a bunch of bees, and improved. Then she began using bee venom therapy.

What herbs did you take and for how long?

Intuitively, I want to ask, did you try allicin? Dr. Zhang's product?
Posted 12/13/2016 6:24 PM (GMT -5)
Have you tried tryptophan yet? For some it increases some issues, but for me, it was the key to helping me sleep. I use Lidtke brand as I was told by a doctor that they process it differently so that it's more potent - don't know that's true though. I take 1500 mgs an hour before bed, along with melatonin, valerian, and magnesium.

Yes, my adrenals crashed really hard a couple of years ago and took my thyroid down with it, so I've been in treatment since. I started out taking glandulars, but when my doctor and I had a disagreement about the use of them (she thought it was my diet, and I had actually plateaued on that dose), so I am now treating myself and doing better. I now use Homeopathic remedies for thyroid and adrenals.

Those gene mutations are a bear! I have some of the more minor ones I'm assuming. I've not been tested, but I do have the same issues as many who do. I detox a TON most of the time. I just have to be careful to pay attention so that I don't 'over detox' - release more toxins than my body can easily remove.
www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html

I would encourage you to try binders like activated charcoal (but watch out for constipation!), Epsom salt and peroxide foot soaks (I don't do the full body soaks because it over detoxes me), I drink Yogi brand detox tea daily, dry skin brush (like you) and use things like apple cider vinegar, ALA, dandelion root tincture, Quercitin (helps with digestion and with mast cells), oil pulling with tea tree oil, lymph massages and a few other things.

With your gene mutations, you will have to figure out what things you need to avoid, but detoxing is going to be your best way of having some control over your symptoms.

Hang in there!! We often say here that healing from these infections is like peeling an onion - there's layers to it. We often uncover infections and issues in our bodies as we try to figure out what it's going to take for us to heal - and we often cry (or feel like it!) as we go through this process!!! We are here to help provide ideas and suggestions to help you get through this!
Posted 12/14/2016 12:50 PM (GMT -5)

Traveler said...
Have you tried tryptophan yet? For some it increases some issues, but for me, it was the key to helping me sleep. I use Lidtke brand as I was told by a doctor that they process it differently so that it's more potent - don't know that's true though. I take 1500 mgs an hour before bed, along with melatonin, valerian, and magnesium.

Yes, my adrenals crashed really hard a couple of years ago and took my thyroid down with it, so I've been in treatment since. I started out taking glandulars, but when my doctor and I had a disagreement about the use of them (she thought it was my diet, and I had actually plateaued on that dose), so I am now treating myself and doing better. I now use Homeopathic remedies for thyroid and adrenals.

Those gene mutations are a bear! I have some of the more minor ones I'm assuming. I've not been tested, but I do have the same issues as many who do. I detox a TON most of the time. I just have to be careful to pay attention so that I don't 'over detox' - release more toxins than my body can easily remove.
www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html

I would encourage you to try binders like activated charcoal (but watch out for constipation!), Epsom salt and peroxide foot soaks (I don't do the full body soaks because it over detoxes me), I drink Yogi brand detox tea daily, dry skin brush (like you) and use things like apple cider vinegar, ALA, dandelion root tincture, Quercitin (helps with digestion and with mast cells), oil pulling with tea tree oil, lymph massages and a few other things.

With your gene mutations, you will have to figure out what things you need to avoid, but detoxing is going to be your best way of having some control over your symptoms.

Hang in there!! We often say here that healing from these infections is like peeling an onion - there's layers to it. We often uncover infections and issues in our bodies as we try to figure out what it's going to take for us to heal - and we often cry (or feel like it!) as we go through this process!!! We are here to help provide ideas and suggestions to help you get through this!

I haven't used that! Not sure if it is a good idea for me to mix more with a prescription sleeping pill. Though would be nice to get restful sleep for once!

That is good, all that you do! I just started Quercetin with Bromelain, hoping that it will help with the mast cells and inflammation. How long did you use it for until you found some relief? I'm told by my acupuncturist that the acupuncture is helping me detox and we're trying to also reset my body so that we can have more control over my gene mutation and help rebuild new cells. We've made huge improvements in terms of toxins. I eat well too, so that helps. Though maybe there is something else that I can do that is gentle.

I know what you mean about peeling layers of the onion! It can be so frustrating from time to time, especially when you're in constant pain and can't sleep well. It gets to you. Thank you so much for your support!
Posted 12/14/2016 1:08 PM (GMT -5)

multifacetedme said...
tepidautumn - welcome to the community. It is so hard to fathom, after all of the approaches, you felt you were better off. Do you happen to have your original symptom list? What cleared up in relation to which approaches? Are the symptoms you list now NEW symptoms or are they a part of the original list. In that you have gone the anti-biotic route, and the herbal route, you might want to consider other techniques that have worked for others. Fever therapy in a controlled setting, and I recently read an amazing blog post about a woman who moved to CA to die, and was stung by a bunch of bees, and improved. Then she began using bee venom therapy.

What herbs did you take and for how long?

Intuitively, I want to ask, did you try allicin? Dr. Zhang's product?

After the antibiotics and antimalerians, I started experiencing severe digestive and gynecological issues. So that treatment made me feel worse. Then I tried to take A-BAB, but the herxes were severe and I had to stop because I wanted to focus on endometriosis. I don't know if that was a good idea or not, but I was then taking drugs for it and went through a severe crisis and had to stop the drugs. I was detoxing with different supplements to withdraw from the effects and was in best shape for some months. I started acupuncture and it helped me quite a bit with IC and endometriosis and headaches. Then I resumed A-BAB but went a bit too fast with it and had to stop and couldn't tolerate it anymore. I got off my supplements because I was concerned I was taking too much. I started detoxing with gemmotherapy and several supplements. At first it was helping me, but then I got GERD and had to stop. That's when things really went downhill. I was in constant panic mode and got neuropathy and couldn't sleep well and GERD really sucked and heat intolerance started creeping up. We tried other things, but to no avail. I tried to boost my immune system with an integrative specialist, but what he prescribed was making me feel even worse (it did not help that when I was trying to contact him about my concerns, he never responded). I started having nightmares, even more panic attacks, the neuropathy got even worse, and burning sensations all over. My sense of smell heightened and my sensitivity to foods and chemicals even more. I had to stop and was just doing acupuncture. At the same time I was trying to retrain my brain because I thought maybe I had a limbic system impairment. That exhausted me physically and mentally and emotionally. Now it is tough for me to tolerate anything. Even foods make me react. What helps me get through the day is meditating and reading and watching tv. And at night, taking sleeping pills with valerian root, melatonin, and tart cherry. Oddly enough or not, these symptoms subside once I take all these supplements and the temazepam. With my acupuncturist we tried chinese herbs, but these ones don't seem to address Lyme directly per se (even though she says they do in her experience, but I consulted other acupuncturists and they say that they don't). So we will switch to other ones. She checked my tongue and I didn't seem to react to them, but I didn't feel super great while taking them, but there could be other factors involved like food and water. I am hoping that the other chinese herbs will help if the Lyme is active and co-infections too. I also just started Quercetin with Bromelain for mast cells because it seems like that could be an issue for me. Hoping that could help with the inflammation too. Acupuncture really helped me not feel as panicky as before and the anxiety isn't as bad. I used to just wait for the time to pass in panic and be scared to be left alone and feel so overattached to others. Now I am just very exhausted but restless because of the burning sensations all over my body. My sense of smell is a little better, but also because I changed to organic non-toxic products in my household.
Posted 12/14/2016 2:18 PM (GMT -5)
Tepid looking at your abx mix I can tell you from my experiences that wouldn't do anything to tackle Bart. I took all that and it did nothing it wasn't until I took Rifampin and Cipro did it really hit it hard. Unfortunately had to stop Cipro due to tendon issues (similar when I tried Levaquin).

Plaquenil is a very weak anti-malarial it may keep it somewhat in check but won't eradicate it. You need a real anti-malarial like Mepron, Malarone, Coartem or Allinia. Herbal wise it's hard to say what will be effective against Babs for example I tried Byron White A-BAB and it did nothing neither did A-BART.

If you really want to see whether you have a Bart infection try a floroquinolone or rifamycin class drug. Maybe Bactrim that's worked for me.
Posted 12/14/2016 4:01 PM (GMT -5)

Rikky1 said...
Tepid looking at your abx mix I can tell you from my experiences that wouldn't do anything to tackle Bart. I took all that and it did nothing it wasn't until I took Rifampin and Cipro did it really hit it hard. Unfortunately had to stop Cipro due to tendon issues (similar when I tried Levaquin).

i resonate with Rikky. My Bart responded very well to a Fluoroquinolone + the TB drug Rifampin. In my case it was levaquin + rifampin.

Rifampin is best taken on empty stomach, absorption is significantly reduced by food. You should monitor your urine color, it needs to be orange-red after 2+ hrs after taking the drug. If it is not, then you probably have taken it with food or not waited long enough after food for the stomach to get empty.

This combination is particularly deadly for bart. All my lymphatic symptoms went away during and a few months after this. They returned but not as serious as back then. My stomach issues resolved almost completely after a short 21 day course.
Posted 12/14/2016 5:48 PM (GMT -5)

mpost said...

Rikky1 said...
Tepid looking at your abx mix I can tell you from my experiences that wouldn't do anything to tackle Bart. I took all that and it did nothing it wasn't until I took Rifampin and Cipro did it really hit it hard. Unfortunately had to stop Cipro due to tendon issues (similar when I tried Levaquin).

i resonate with Rikky. My Bart responded very well to a Fluoroquinolone + the TB drug Rifampin. In my case it was levaquin + rifampin.

Rifampin is best taken on empty stomach, absorption is significantly reduced by food. You should monitor your urine color, it needs to be orange-red after 2+ hrs after taking the drug. If it is not, then you probably have taken it with food or not waited long enough after food for the stomach to get empty.

This combination is particularly deadly for bart. All my lymphatic symptoms went away during and a few months after this. They returned but not as serious as back then. My stomach issues resolved almost completely after a short 21 day course.

That's pretty amazing guys! Though I am a little scared to go on traditional drugs. I'll see how I do on Chinese herbs which are supposed to also help fight Bartonella (if I have it!).
Posted 12/14/2016 7:19 PM (GMT -5)
tepidautumn,
All of these symptoms you're describing will all most likely get much worse before they can get better while on treatments. It's called "herxheimer reaction". If you do some research on it, more of an explanation will be available than what i can provide at the moment! But, I can tell you that this so called Herx reaction totally sucks, and can last a while but should hopefully get better with time. And by time I mean... more than just a few weeks.. It could possibly take years of treatment or pulsing treatments until you've improved enough to function daily or almost daily. Stay Strong! Good Luck!!!

With Love, Aly
Posted 12/14/2016 8:31 PM (GMT -5)
MyLymeBind, welcome to our forum. You seem very well informed about these diseases!


I would still like to encourage you to read over our introduction "New to Lyme?.....start here!"
Posted 12/14/2016 8:56 PM (GMT -5)
>>It could possibly take years of treatment or pulsing treatments until you've improved enough to function daily or almost daily

yup that describes my journey, or is it nightmare? ;o) welcome aboard Aly!
Posted 12/15/2016 11:09 AM (GMT -5)

MyLymeBind said...
tepidautumn,
All of these symptoms you're describing will all most likely get much worse before they can get better while on treatments. It's called "herxheimer reaction". If you do some research on it, more of an explanation will be available than what i can provide at the moment! But, I can tell you that this so called Herx reaction totally sucks, and can last a while but should hopefully get better with time. And by time I mean... more than just a few weeks.. It could possibly take years of treatment or pulsing treatments until you've improved enough to function daily or almost daily. Stay Strong! Good Luck!!!

With Love, Aly

Hi MyLymeBind! I do know about herxes! It was easier for me to understand them when I just started my treatment two years ago. I would get flu-like symptoms. It got harder understanding with time because of possible co-infection activation and I was treating symptoms at some point rather than getting to the root cause, so the symptoms intensified. Now I have a harder time understanding (does not help when I react to foods as well!). But I am trying to make sense of it all now.
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