First ever post...abx for 4 months so far. Need advice and reassurance

Hi everyone I'm Kathryn, 20 yrs old, and battling with lyme in my college years. I'm new to this, but I figured it was about time to reach out to people in a similar place to me, since not many people understand what having Lyme is like, unless actually living with it.

I believe I contracted Lyme last August..misdiagnosed until January and have been on doxycycline 2x a day 200mg ever since. Started with severe panic attacks, dizziness, and insomnia. No co-infections fortunately. My main symptoms I can't seem to shake at this moment are the brain fog and anxiety. I am spaced most of the day and it is hard for me to do anything I would normally do.

In a few days, I will be switching over to azythromyocin (Zithromax) once daily, and I heard a herx is possible which scares me because my herxes are very strong and include ocular migraines, vision problems, and severe panic attacks.

My specialist believes I will eventually be off of abx, but is not sure how long it will take for me to become healthy again. I am considering IV abx in the fall, if worse comes to worst. I have cut sugar, most carbs, drink plenty of lemon water, and take epsom salt baths regularly. I also take glutathione, magnesium, nystatin, probiotic, vitamin d, and vitamin c.

I guess my questions are...

(1) will my brain fog ever go away? I have not had one clear day since last August. I also am nervous that I will get a bad herx when I switch my abx to Zithromax.
(2) Should I expect the new abx to treat my brain fog? I know that Zithromax is used to treat a sinus infection, and I have a lot of pressure in my sinuses t/o my day... my symptoms are at a plateau right now, and I need some reassurance. Some days my symptoms are worse than others,
(3) is that herxing? Or worsening of the disease? I find that some of my old symptoms I haven't experienced are beginning to occur again. Maybe the new abx will help?

I am at a loss, and so sick of dealing with this disease, it is affecting my friendships and relationship. I need all the help and advice I can get.

Thanks, all

Hi kml - welcome to our community!

Purrsiankitty has given you a lot of good information.

are you taking a total of 200 mg daily? Generally the required dose of doxycycline is 200 twice daily (total 400mg).

And, since you have chronic lyme - then two or more antibiotics simultaneously is recommended for treatment.

It would be better if your Dr. was adding the azithromycin to the doxy, rather than replacing it.

When you feel worse after starting treatment...(and during treatment this will happen as well) - it is because the treatment is killing the bacteria. When the bacteria dies off, it creates endotoxins...that flood your system...resulting in inflammation. This reaction drives the increase in your symptoms. (and sometimes you will get new symptoms added) This is called a herxheimer reaction.

The best way to help with the herxing - is to detox. You will want to employ multiple methods of detoxing daily.
Start with a couple and every 3-5 days add in a new one.

You can start with drinking at least 8 glasses of water daily.
Add some fresh lemon juice into some glasses. (May want to drink with a straw so not to damage dental enamel)
Take epsom salt baths
Dry brush your skin prior to the baths (gets the lymph system moving...as well as sloughs off dead skin and allows the toxins to be released(
Take a liver support supplement.

Are you on probiotics ? Taking them daily?

Here is a link to a website with several detoxing ideas:

www.tiredoflyme.com/detox-methods

How did you find the Dr. who is treating you? Do you know if he is Lyme Literate? (I am asking because you mentioned just the one antibiotic at a time for treatment)

Yes, the treatment should clear up the brain fog...but it needs to be proper treatment.

Hi Girlie- thank you for the response!

I am in fact taking 400 mg doxy daily (200 mg twice a day).

Yes, I am taking a probiotic daily to introduce "good" bacteria to my body. I am being treated by a highly-rated (almost 5 star) LLMD that has been working with lyme patients successfully for many years. I was recommended him by a family friend that has been treated by him personally. Each detox method you listed I have been practicing.

Thank you for the detox link, I will check that out, and thank you for your help

bigcat-

Ha, exact situation for me!! Docs thought I was crazy and symptoms were all in my head for months. Put me on three different anxiety meds/narcotics...only made me feel worse. Told me I needed therapy too. Glad to hear you're feeling healthy again and recovering. I hope this website will put me at ease that I am not alone, thank you for the response

PeteZa-

Thank you so much for responding. It makes me more than happy to hear that your brain fog went away, and that it is possible for mine to do so as well

I can already tell I will find this forum extremely helpful in my recovery process

kml1997 said...
bigcat-

Ha, exact situation for me!! Docs thought I was crazy and symptoms were all in my head for months. Put me on three different anxiety meds/narcotics...only made me feel worse. Told me I needed therapy too. Glad to hear you're feeling healthy again and recovering. I hope this website will put me at ease that I am not alone, thank you for the response

Hi and welcome! First I want to say Zithro was a walk in the park for me compared to Doxy. I didn't know enough about the reason to de-tox, or how easy most methods are, and I thought I was dying while on Doxy.

That said, none of it did much good due to only being prescribed one abx at a time, and I really knew nothing about herbs or other forms of treatment.

The other thing I wanted to say is anxiety/panic attack like symptoms have been a problem for me off and on throughout my initial infection(s) and antidepressants didn't help, in fact caused me problems. But they are helpful to some that are really losing the depression struggle, which wasn't me at all.

For the last few months I've been taking an herbal tincture called Avena Sativa, and it does calm me down. I take at least about 30 drops twice a day unless my situation demands heavier hitting, and then I can take it 3 times a day or more @twice the dosage. Even better in warm to hot water.

I started at a very low dose and built up, but never had a herx reaction at all.

You need the kind made from the tops of milky stage oats; Sagewoman herbs sells the right stuff.

PeteZa-

Fortunately, I am living home for college and have access to healthy food. It is now summer break, so I will have months to focus solely on my health and getting enough rest.

I am also starting to record my diet in a food journal along with my symptoms. It definitely helps! I will check out the link to Avena Sativa

Thanks for all the advice thus far

kml1997, I am so glad you will be home for the summer and I bet your family is too, especially your Mom.

Take care and hope the Zithro is easy.

kml1997 -

I'm also sorry you're having such a tough time - but glad you're here. Hopefully we can help you chip away at your issues... it can sometimes take "peeling the onion" to figure out what combination of things is causing which symptoms and what works to address what. And it can take some trial-and-error.

The posts above are really great so I hope that gives you some direction or ideas for the antibiotic tweaking.

I also agree that you should test out some good herbal tinctures for coinfections to see what your reaction to them are. The tests for coinfections are as unreliable as they are for Lyme - so I'd go by symptoms. Here is an interesting symptom questionnaire that might hold some clues for you, hopefully:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

And I wanted to offer a few suggestions for the brain fog. As others shared there are several possible reasons for this - you had it before you started on abx so I agree it's probably not a herx. So here's some troubleshooting:

How is/was your gut health? Is there any chance you have a yeast/fungal overgrowth? Check out this post for more info (it's l-o-n-g but you can jump to the symptom list and scan it - see if there is anything that jumps out at you. Yeast overgrowth AND die off produces ethanol - yes, you read that right. So that can have the same effect as drinking alcohol. If you have any moderate GI problems, read more of the post.
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

Science finally proved the gut-brain connection when they found blood vessels that connect the two. So this is why it's good to investigate any GI issues. Are you regular? Do you have any food sensitivities? I have found that taking a binder has also helped with not only my GI issues but really helps detox and if any GI issue is also contributing to brain fog, this should help some. Be sure to respect the buffer times and drink a lot of water.

Some people also develop yeast/fungal issues or other imbalances from some probiotics - so that's something to look into. So many of us are taking probiotics.

Next, have you ever tried any brain detox tinctures like Nutrimedix Bur Bur and Pinella tinctures? They REALLY help me. You mentioned pretty severe headaches as a common herx so it seems your brain really needs some support detoxing. I get a little boost with Huperzine, too. Anti-inflammatories also help... I sometimes need them all.

OK - hope something resonates!

-p

My brain fog went away with treatment. The last day I had symptoms was Feb 5th. I feel 100% back to normal now. I need to post on the success stories section. Anyway, don't give up. I was misdiagnosed for 6 years and my neuro lyme was really bad.

bigcat - 11 months total. 4 months of rotating abx combinations focusing on babesia. 4 months rotating abx combinations with doxy. 1 month of iv rocephin.

that's great and it gives people hope and that's important I think

Thanks y'all. Sometimes I can't believe it myself. I still think about it every day. Sometimes, when I am driving, I still have a little bit of fear.

The B12 and vitamin D are really helping. The depression has lifted. I am running at the gym almost every day now. Becoming more social. Some friendships are lost forever, or so it seems, I was a real flake when I was sick. Cancelling at the last minute. I understand people don't think you are sick because you don't look sick. But that's also my fault because I accepted invitations hoping I would be ok that day.

Flagyl and doxy was the winning combination for me. I was on it for 2 months in the end. I took flagyl two other times before, and I could tell the difference. The side effects are brutal, but the brain fog subsided. So I just endured. By the time I took rocephin, I was already feeling better.

The process was slow, bigcat. I only felt better on the 7th month, more or less. I kept track of my symptoms on a spreadsheet. Every time I got a flare, I hoped it was the last.