Scared about if my Lyme is worsening or what is going on with me! Thoughts?

Hi again everyone & thank you so much for all of your help (I know I still need to respond to your posts in my last thread - I'm sorry!).

I am wondering if the following is a bad sign?

I am still taking doxycycline 100 mg twice a day. I'm on day four of that.

I'm noticing more mental symptoms and cognitive functioning problems. I'm wondering if that's a sign that the doxy dose isn't working or isn't high enough or that I need additional antibiotics or iv ones?

I'm having moments of just feeling really tearful, moments of feeling like I'm going crazy, moments where I feel depressed, my vision is almost hallucinatory at times (meaning it's just not sharp/clear but sort of wavery/blurry), I'm having trouble understanding when my husband speaks at times, can't follow directions at times, very forgetful at times, misspeaking words, forgetting what I was just thinking about, having trouble remembering, and more. I also notice every night that my eyes look really red like conjunctivitis from the inside corners stretching out to my irises. (Can that be from Lyme or coinfections or the doxy?)

What scares me is I just went on a web site where it gives a definition for something that seems really serious and it describes what I'm experiencing really well:

b. Encephalitis is commonly accompanied sleepiness, mood swings and irritiability, atypical spontaneous tearfulness or personality change, cognitive problems (typically with word finding problems, memory loss, slowed mental speed), balance problems, and sensory hyperarousal (e.g., vision, hearing).

I was so tired last night, I couldn't even come on here to read my last thread. I slept a lot last night and my husband took our son downstairs, I told him I'd be right down but instead I fell back asleep and slept for two more hours. That is not like me at all.

I also have a lot of the following definition too that I found on the same web site:

a. Encephalopathy. Patients may develop cognitive problems from Lyme disease either early or many months or years after the initial infection. The cognitive problems most commonly include problems with short-term memory, problems with verbal fluency such as in name or word retrieval, and problems with slower speed of thinking. Patients typically report that they have “Brain Fog”. On a practical level, adults may have difficultly in following the normal speed of conversations, children may find it difficult to write down the homework assignments quickly enough or even forget whether or not they did the homework the night before. Because of the slower processing speed, normal tasks take on a greater burden and the individual may feel mentally slow. In untreated neurologic Lyme disease, the encephalopathy can be moderate to severe, while in later stage treated Lyme disease the encephalopathy is often more subtle – mild to moderate in magnitude. Rarely the encephalopathy may manifest as dementia.

I had about two hours today where I felt really good. I have had a chronic pain in both my wrists for two years and I suddenly realized it was gone. It had been diagnosed as de Quervain's tenosynovitis and treated through physical therapy. It is constant and suddenly it was just gone. I felt happy. I also noticed the pain I have in my liver from my intrahepatic cholestasis was suddenly gone too. But shortly after, I started to feel panicky on and off. I felt like I was dying. I stood up and told my husband it felt like I was having an allergic reaction. I asked if I should take Benadryl but I didn't end up taking it. My throat hurt suddenly and felt weak, wispy. I then quickly felt very hot and took my temp and it was 100.4. I feel absolutely starving hungry since then. I also started to feel super restless and began pacing the floor and paced for at least 25 mins. I have since been able to lay down but still feeling hot. I couldn't tolerate the sound or motion of the tv and my husband had to turn it off. Can a herx cause all of this? Can a herx feel like an allergic reaction in some ways?

I should also mention in my sleep last night I woke up at one point from a vivid dream and was sweating a lot. I took off one of my blankets and then fell back asleep only to wake up shivering a while later.

Could this be a bad sign? I am not having any GI problems on doxy and am having moments where I feel almost normal. Better than I have in years - my vision is clear, I don't feel dizzy, I feel happy, and I can feel the fever is lower.

But I am having severe symptoms and I am worried that it may be continuing to advance. Laying down after the weird panicky time, I felt tingling down my legs, & my right hand felt numb. My vision was weird - it's hard to explain but it's like it's sort of moving.

Do you think the doxy is not enough? Do you think a coinfection is to blame for what I have going on? I'm scared and confused. I don't knew what is happening to me and I need to be ok. I have a son and I'm a SAHM. My husband is home for the summer thank God but I need to be ok! My little guy relies on me.

I have moments of just not feeling like myself since starting the doxy but I also feel better on it then I did on the Ceftin. I am also getting pain in my left groin where my lymph nodes are. I wasn't due for my period for 4-7 days but I noticed I'm having bleeding already. I feel like such a mess.

I have done two rounds of dry skin brushing today and drank lemon water.

I don't think the Lyme literate naturopath I saw is going to be much help. I emailed her asking if this stuff I'm experiencing is normal and she didn't even respond to my questions.

I can call my primary care doctor tomorrow. But I don't know that he will know enough about what is happening to me to know what to do.

I am also noticing I still have skipped heart beats here and there but not as bad at all as on the Ceftin and my heart only raced when I felt panicky.

I'm scared wondering if the doxy is not working. Why is my mind so jumbled? I couldn't even understand my husband seriously twice today. I also noticed I messed up my pills organizer (I have a weekly pill organizer for my ursodiol so that I never forget to take it). I am only taking ursodiol and doxy.

I have slowed down nursing my son a ton too so I'm wondering if that's coming into play here. He was nursing every couple of minutes and all night every few hours and now I am not nursing him at night and only twice a day. So maybe that's what's going on? Maybe that hormonal shift is making it all worse? The liver condition I got when I was pregnant is a hormonal one (intrahepatic cholestasis) but mine never resolved after I had my son they think because of my breastfeeding hormones. So now with barely nursing him as I work on weaning him if I must stay on doxy, I'm wondering if my changing hormones are effect of the Lyme? Or if the Lyme is just advancing!

I don't know what to make of anything anymore. I feel so sick and confused.

Thank you so much for any thoughts on this. Also, last night my foot which had been very numb hurt badly for a while. And today the pain is gone.

Post Edited (H Mommy) : 8/3/2016 12:15:09 PM (GMT-6)

H Mommy, I feel so badly for you. I know how scary all these things are.

All the things you have mentioned sound like a herx. I have dealt with some of this over the last month. I purchased Pinella and Burbur and actually used it every 20 minutes (10 drops each) for an hour and a half during a particularly hard herx. It really helped.

A lot of what you are dealing with will ease up with treatment. It won't be 100% right away, but it will get much better.

I also suggest that you add different detox methods to your regime every few days. One thing not to use at this time is activated charcoal or any binder for that matter. Not while you are nursing. It can take away some of the nutrients you are trying to give your son.

As far as responding to the other post. Don't feel bad. You need to make your health your first priority. We all understand how you can suddenly crash and not have enough energy to complete a task!

Sorry you're having a tough time now - it really does sound like you are herxing.

So, hang in there...detox and be kind to yourself. You need to take care of yourself now...

H Mommy said...
I'm noticing more psychiatric things and cognitive functioning problems. I'm wondering if that's a sign that the doxy dose isn't working or isn't high enough or that I need additional antibiotics or iv ones?

I'm having moments of just feeling really tearful, moments of feeling like I'm going crazy, moments where I feel depressed, my vision is almost hallucinatory at times, I'm having trouble understanding when my husband speaks at times, can't follow directions at times, very forgetful at times, misspeaking words, forgetting what I was just thinking about, having trouble remembering, and more.

Hi Mommy!
First, I want to assure you that these sx are very likely herxing. This sounds counterintuitive but it's a fairly good sign that the abx are doing what they're supposed to be doing.

I experienced nearly the same when I started both of my antibiotics (for lyme and bart) and unfortunately, they lasted a few weeks. Now is the time to focus on your detoxing --start slow and make sure you're doing it very effectively and comprehensively. There is good info on the forum to help guide you.

To be sure, you might want to contact your LLND and share these symptoms - he/she will likely confirm you are herxing and the abx are working! But it's good to provide an update - it doesn't make you paranoid or bothersome. Communication is KEY w/ our specialists.

Also, b. Encephalitis can be a common way for lyme to manifest itself. The doxy will help by breaching the blood-brain barrier. Reducing inflammation will also able helpful (I take Japanese Knotweed for this but there are other anti-inflammatory herbs) - as will doing specific things to help detoxing your brain (try Pinella and Bur Bur tinctures - many of us here are taking them with good success).

H Mommy said...
I was so tired last night, I couldn't even come on here to read my last thread. I slept a lot last night and my husband took our son downstairs, I told him I'd be right down but instead I fell back asleep and slept for two more hours. That is not like me at all.

The infections and the treatment are incredibly draining for our body. This is not your ordinary infection or treatment. Fatigue should be expected and you might have this level for a few weeks. If it continues beyond that I would investigate a viral load that you might also need to address.

H Mommy said...
I had about two hours today where I felt really good. I have had a chronic pain in both my wrists for two years and I suddenly realized it was gone. It had been diagnosed as de Quervain's tenosynovitis and treated through physical therapy. It is constant and suddenly it was just gone. I felt happy. I also noticed the pain I have in my liver from my intrahepatic cholestasis was suddenly gone too.

It is POSSIBLE that these pains were due to the lyme infection, after all. Or are just benefitting from the abx treatment. It's so hard to really know. Enjoy the reprieve!

H Mommy said...
But shortly after, I started to feel panicky on and off. I felt like I was dying. I stood up and told my husband it felt like I was having an allergic reaction. I asked if I should take Benadryl but I didn't end up taking it. My throat hurt suddenly and felt weak, wispy. I then quickly felt very hot and took my temp and it was 100.4. I feel absolutely starving hungry since then. I also started to feel super restless and began pacing the floor and paced for at least 25 mins. I have since been able to lay down but still feeling hot. I couldn't tolerate the sound or motion of the tv and my husband had to turn it off. Can a herx cause all of this? Can a herx feel like an allergic reaction in some ways? ...Laying down after the weird panicky time, I felt tingling down my legs, & my right hand felt numb. My vision felt hallucinatory - it's hard to explain but it's like it's sort of moving... I don't know what to make of anything anymore. I feel so sick and confused. Also, last night my foot which had been very numb hurt badly for a while. And today the pain is gone.

Yes, a herx can cause this - plus an allergic reaction. If you didn't have any trouble breathing or with swollen airways it is probably not critical but you should definitely share this info w/ your LLND. Most of what you described is how I felt after starting my abx. But I also had similar "panic/restlessness/agitation" after taking an abx I was allergic to, as part of an anaphylactic response. If you're OK now and have continued taking it w/out continued problems, I would chalk it up to a herx.

H Mommy said...
I should also mention in my sleep last night I woke up at one point from a vivid dream and was sweating a lot. I took off one of my blankets and then fell back asleep only to wake up shivering a while later...

Have you been checked for coinfections? This sx sound like lyme and bart.

H Mommy said...
I am not having any GI problems on doxy

Keep up the good work! What are you doing to protect the gut? Antifungals, probiotics, diet, detoxing, etc... There is a strong gut-brain connection and whatever goes on in the gut can also affect your neuro-psycho sx. Nearly everything we digest - foods, supplements, medications - is through our guts so we need it to stay healthy. Also, 70% of our immune system IS our gut so - optimal function is critical.

H Mommy said...
Do you think the doxy is not enough?

Honestly, I think it's a solid herx and a good sign.

H Mommy said...
Do you think a coinfection is to blame for what I have going on? I'm scared and confused. I don't knew what is happening to me and I need to be ok. I have a son and I'm a SAHM. My husband is home for the summer thank God but I need to be ok! My little guy relies on me.

You surely have many stresses - being in treatment is toughest on parents, I think. Just know that herxing is usually most severe at the beginning of treatment and you'll do well to incorporate as much detoxing as possible - but be sure to do it in the right way. If you'd like more info on detoxing you can do a search or check out this site:
www.tiredoflyme.com/detox-methods.html

H Mommy said...
I am also getting pain in my left groin where my lymph nodes are.

Another good sign that you might also have a high viral load - you might want to talk w/ your LLND about an antiviral.

H Mommy said...
I wasn't due for my period for 4-7 days but I noticed I'm having bleeding already. I feel like such a mess.

Lyme can really fuss with our cycles. Menstruation is yet another form of detoxing, so hopefully, the more you support detoxing, the easier your periods will be.

H Mommy said...
I have done two rounds of dry skin brushing today and drank lemon water.

AWESOME! Are you taking any binders like activated charcoal or bentonite clay? Regular bowel movements and gut detox is VERY helpful. How about any sweating through exercise or sauna or baths/soaks?

H Mommy said...
I don't think the Lyme literate naturopath I saw is going to be much help to me. I emailed her asking if this stuff I'm experiencing is normal and she didn't even respond to my questions.

Unfortunately, this is common. They are very busy and some don't check email often and others don't like giving advice over email. Try calling first thing tomorrow.

H Mommy said...
I can call my primary care doctor tomorrow. But I don't know that he will know enough about what is happening to me to know what to do.

AGREE - I doubt your MD will know what to do unless it is a medical emergency type issue and then he will direct you to the ER. Sometimes our MDs and our naturopaths can coordinate together but this takes both of them to want to do this. Have you talked with them about that?

H Mommy said...
I am also noticing I still have skipped heart beats here and there but not as bad at all as on the Ceftin and my heart only raced when I felt panicky.

This is also something you should discuss w/ your ND right away. Probably related to herxing but it's best to communicate this and be sure.

H Mommy said...
I also noticed I messed up my pills organizer (I have a weekly pill organizer for my ursodiol so that I never forget to take it).

You should definitely engage your husband to help you set up your pill box for the week... let him help you.

[quote="H Mommy"]I have slowed down nursing my son a ton too so I'm wondering if that's coming into play here. He was nursing every couple of minutes and all night every few hours and now I am not nursing him at night and only twice a day. So maybe that's what's going on? Maybe that hormonal shift is making it all worse? The liver condition I got when I was pregnant is a hormonal one (intrahepatic cholestasis) but mine never resolved after I had my son they think because of my breastfeeding hormones. So now with barely nursing him as I work on weaning him if I must stay on doxy, I'm wondering if my changing hormones are effect of the Lyme? Or if the Lyme is just advancing!

I think you are asking very good questions about the nursing, although I have nothing to offer on that subject. You might get better responses by starting a new thread with this topic, so that you can garner the attention of mothers a little better.

Hope this is helpful! Keep asking questions, if not. You're doing great - just keep up the detoxing!

-p

Post Edited (Pirouette) : 7/31/2016 5:05:36 PM (GMT-6)

H Mommy, you sound very normal for a person with lyme to me.

I got so scared and would ask my husband, "should I go to the hospital?" He got very good at saying, "it's just lyme honey." Bless his heart.

Then we got to the point where he would see me grimace in pain and I would just say, "stupid symptom."

Krimpet said you get worse before you get better and I sure found that to be true.

Hang in there. We are all here for you and hope to make you feel as best we can while you heal.

First thank you all so much.

Second, that horrible what I'm assuming was a herx reaction died down.

But then after dinner I went and took my ursodiol which I have taken ever since five weeks pregnant with my son. And all of a sudden my throat feels weird, and I feel like I'm having an allergic reaction or something. I feel totally drained and exhausted. And my heart was racing. I'm breathing ok but this has never happened after taking ursodiol. I don't know what is happening to me.

We have started wondering if I have actually had Lyme disease for quite some time - I had a nymph deer tick on me in 2012 before we started trying to get pregnant with our son. I got really sick after having a vaccine shortly after the tick and was sick for two months but never pieced together maybe I already had Lyme. I ended up having chronic health problems ever since then. I did go to my previous primary care doctor back then but she said no treatment was needed for having the tick on me. She wouldn't even send the tick to the lab for ID for me.

We only just started wondering if maybe I've had Lyme for a few years and now have a new strain with these new ticks? And new coinfections? We don't know. I have had all these mystery chronic health issues and been a medical anomaly to doctors for the past four years.

Thank you all so much again. Now I'm getting tight muscles. This is so scary!!

Post Edited (H Mommy) : 8/3/2016 12:17:45 PM (GMT-6)

Remember the body heals-one day at a time
The thing that helped me the most was seeing a biological dds-two months later I was 50-60% better
Might be worth a check up

Since you are on antibiotics, have yeast or other fungal issues been addressed?

Your symptoms seem like mine. I kept ignoring them until my body began shutting down, and my LLMD fully believes it's Candida/mold, which is something no one wants to hear/believe they have.

Is your tongue white? Frequent sore throats, urination, skin issues as your main symptoms? Those are classic Candida! Can be attributed to many other symptoms, but if these symptoms are the ones you think of when someone asks, "how does Lyme affect you?" You're basically describing how fungi affects you!