Lyme Brain Fog

I was infected for over 2 years before my diagnosis of Lyme Disease. I went through all the mysterious symptoms. Fatigue... insomnia... nerve pain in hands/feet... rashes... joint swelling... loss of vision... and brain fog.

After finally being diagnosed, I was given 1 month of oral Doxycycline. It has now been about 9 months since I finished treatment. My physical symptoms have cleared up nicely... but my mental symptoms continue to linger.

And in my opinion, the mental symptoms are the absolute worst part of Lyme.

I am still dealing with memory problems, anxiety, lack of focus, fatigue, and a general feeling that my head is just floating around. I am a young guy in pretty good shape and I should not be feeling this way. I am a total space shot now.

Also... in the past 2 weeks have discovered a NEW symptom. My temples are very tender and feel sore when I rub them. Not like a headache... because they only seem to hurt when I touch them... almost like a sore muscle. Is this part of my healing process or should I be worried?

So basically I'm wondering if I will ever get better on my own... or if there is some action I need to take to fight back.

I would love to hear from ANYONE. Advice... Insight... Cures... Herbs... Experience... all are welcome. Thank you!!!

Hi MysteryLyme !  Welcome!

Hi MysteryLyme!
Welcome to our forum!! I am so sorry to hear that you are still experiencing symptoms(!!), but I am happy you found us!! I'm sure will find us to be a caring, helpful & understanding group!

You will find a great deal of information, as well as some great links, in the thread at the top of our forum titled, "New to Lyme?...Start Here!" that our members put together. This would be your best place to start gathering info!! We also have a really great 'search' option that searches this site, to help you out a little more.

As Cat said in her very wonderful post, one month is not a sufficient amount of time to rid your body of tick-borne infections. Most knowledgeable LLMD's (Lyme-literate Medical Docs) will put their patients on at least 2 - 3 months of Doxy at the dosage of a minimum of 400 mgs/day. If this is tolerated, the dosage is usually raised to 600 mgs/day, as Doxy is only effective against LD at higher blood concentrations.

There are also plenty of alternative treatments that you can look into, as it seems that more & more LLMD's are starting to include some type of herbal or natural treatments and getting better results for it.

I think Cat may be right about your pain at your temple pain - I clench my teeth & get that result frequently. If I rub - believe it or not!!! - a little bit of peppermint extract on my temples & concentrate,I can usually get quite a bit of relief. Although I do have to say that I get those tender points all over my head, depending on my day, & haven't figured out what to do about that yet!!

I do hope that we have been able to shed a little light on what you may be experiencing!

Again, welcome to our forum!!

---

Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs.

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, which makes long paragraphs very hard to read.

Thanks for the advice...

I'm pretty sure I don't need any more antibiotics. I'm confident my 1 month supply actually did the trick. Since my current symptoms are only mental I am thinking this is probably some lingering damage.

Is there anyone out there who has had brain fog that cleared itself up after awhile? Everyone I read about... it always looks like such a struggle. There's gotta be some people who actually get better on their own right?? Or with herbs?

Any real life success stories out there?

Mystery, you do sound confident and that is great but you are still experiencing symptoms.

memory, anxiety, fatigue....all you just listed is still part of it.
who gets cure after one month of oral doxy ? plus you had it for 2 yrs before even doing that.

this is classic mis-treatment of lyme.

what is your entire diagnosis?

what coinfections do you have?

Was your doctor a lyme doctor?

please get this book. Insights into Lyme and see how
often this mistake happens and all the ways of being diagnosed and
tested correctly. make sure you were checked for everything.

And don't wait thinking this will go away. Read about all the coinfections.

If you got cured after one month of oral doxy and had lyme for 2 yrs before getting treatment
you just made medical history.

Take these symptoms very seriously and even more all your origional testing to make sure you got the whole pictures.

so glad you popped in. It really is a breath of fresh air hearing the progress you have made. You really are
very fortunate and we love all the success stories.

better to be on safe side and what Traveler said is all true.

just curious??? how did you feel while on the doxy. Did you have any herx reactions or were you feeling less symptomatic.??

---

20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

Well... like i said... im pretty sure the 1 month of doxy killed off the critters. i met with my standard doctor who personally called me to break the news of Lyme. i was then instructed to pick up the doxy and start treatment right away. the doctor knew how long i was sick and told me that basic lyme treatment is usually only 2 weeks but wanted my treatment to be 4 weeks. we even talked about a longer treatment plan but i was told it wasn't necessary. i have alot of trust and respect for my doctor and considering i live in massachusetts lyme is nothing new to anyone here. i dont buy into the hype that everyone needs months or years of treatment. of course a few people do but i really dont think it should be the norm. im a little off put that the first 3 responses ive had here are so quick to say i need more antibiotics even after i said i dont.

anyway...

while taking the doxy... the thing i remember most is feeling like my muscles were on fire. especially my thigh muscles... like i just rode a bike 100 miles. also i had some weird burning headaches. i took time off from work and focused completely on healing myself. making sure i took the doxy at the proper times each day. drinking lots of water. working out. doing yoga. trying to increase oxygen flow and doxy flow throughout my body as much as possible. the physical symptoms were pretty much cleared up within that month.

brain damage. nerve damage. that is what im dealing with now. how do we repair the nervous system after its been through so much? thats my issue... and im sure there are many others asking the same thing. im just looking for people with answers. maybe im barking up the wrong tree?

MysteryLyme,

Welcome to the forum hun:) I just want to explain why you were told that one month of Doxy was not sufficient. We have very knowledgeable members here and we have all been through this, over and over, with doctor's telling us that 2-4 weeks of antibiotics were enough. MANY have come back to the forum after months of feeling well, only to relapse with the exact same symptoms they had before or worse. We are just trying to protect you, not upset you. If you think that a month is long enough, then that's great:)

As far as the brain fog goes, have you tried detox baths yet?

---

Co-Moderator- Lyme Disease Forum

Lyme Disease, Fibromyalgia, Hashimoto's Thyroiditis, Rheumatoid Arthritis
Prescription Meds:Sulfasalazine(RA), Medrol pack(Steroids), Cymbalta(Fibro),
Oxycodone(BT Pain), Tramadol
Supplements:Folic Acid, Probiotics, Vitamin D, Multi Vitamin

MysteryLyme, I also live in MA and 1 month of doxy is why I am still sick 5 years later. It isn't enough. Especially if you had already been infected for 2 years.

I am not trying to be a daisy downer here, and it is awesome that you have a positive attitude but... those of us that have been on this roller coaster ride for a while have done countless hours of research, read tens of hundreds of medical journals, studied websites, therapies, and read many, many stories from others.

That being said, you are not barking up the wrong tree here, as you will get more info here and on similar sites than you will at your Dr's office. I LOVED my old doctor, she was wonderful and awesome and totally heard me...until it came to the Lyme dx. She wasn't going to go there, because she had NOT done the research/reading/studying that many of us and the LLMD's have done. Just because you love your doc, does not mean he/she is right.

With Lyme, you have to become your own doctor. Spend some time here and on other sites that are full of info. Email me and I can connect you with a group in MA also... rawveganrunr@yahoo.com
Good luck to you....

---

http://rawveganrunner.blogspot.com/

Dude, i so empathize. I have dealing with such symptoms as:

Started as fatigue, then panic attacks, Lightheadedness, heart palps, dizzness, entire right body ache from arm to leg, crackling neck n body, violent body tics-strong exhale, brain fog,twitches, list goes on.

Intially i thought it was exclusively general anxiety disorder, consider thats what one doctor said after 4 er visits,
2 cat scans, blood work etc.

Same a doctor few weeks ago he is testing me for lyme, not sure if it is that. But every day, i think is it something more serious nerologically I DONT KNOW.. dont think so.

Even though test results yet 2 return, i am seeing so many similarities with LYME symptoms.

For your brain fog: I have been doing research. Dude those pathogens get in your brain. I suggest you do 1 or both of the following: Ozonation and Zap. So where they hide can be addresses.

I hear that the following also destroys the bacteria and other pathogens as well:

Uncaria tomentosa(Cat's claw)
Andrographis paniculata
Dipsacus spp.(Wild Teasle)
Polygonum cuspidatum (Resveratrol)

Hope these things help.

Mystery: I do hope that we didn't offend you by so quickly going against your opinion of what you need (no more abx), it's just that there is really no evidence that for chronic cases (such as 2+ years illness before diagnosis) that one month will do the job.

The other part of your posts seems to indicate that in your opinion, the brain fog is a lingering effect of the damage caused when you had critters, and is not evidence of bugs still roaming around inside you. This is probably where the disconnect between the two sides comes from.

I'm sure we all agree that there is a chance that you are right, that the bacteria are all gone, and most all of us would also agree that even when that happens, the body needs time (occasionally lots of time) to detoxify completely. There are lots of techniques to use for that. If that's all you are looking for, some of those answers are coming in. And as always, no matter what stage of illness you are in, not everyone chooses to use traditional abx; there are always other paths you can try.

But Lyme disease, and its friends since it often invites others to the party, is a multi-system illness, especially when someone had it for a long time like you did. (I too am from MA, we all could have been bit when we were kids and been sick for decades; there is absolutely no way to know.)

I don't blame you one bit for wanting to believe that you've killed all the bugs, and now you just have to sweep the corners to clean up after the party. I'm sure we'd all love to be done with this disease! But what you're hearing from lots of people with, sigh, decades of experience in dealing with and learning about it to the point where only LLMDs know more than we do about the disease, is that the odds of you having killed all the bugs are virtually nil.

The two weeks/four weeks difference in your doxy is really only relevant to brand new tick bites, and maybe should not even have been a factor in your initial treatment. That's why you received questions about whether your MD is an LLMD or not; even in MA, generalists are not even close to staying up-to-speed with Lyme treatments.

If you're able to live a fully, normal, happy life right now, then I can completely understand why you are hoping to move into some kind of final-stage plan. But it sounds like you really do have some significant brain fog, with some new symptoms creeping in, and honestly, it's pretty hard for us to see how you're not still stuck in the middle of the battle.

Of course, we are all in the battle as well, and hopefully we can support you in the ways you need and ask for (information, support), as well as occasionally help out by providing some food for thought that you hadn't known you were looking for.

wellnessquest... thanks for the advice and empathy.

this was actually my 1st post ever on here. and im glad you dug it up because i can look back and see how far ive come. im doing much better these days. what you describe sounds like Lyme to me. anytime a younger person gets mysteriously ill it really seems like Lyme is the last thing they look for unfortunately. the first 2 doctors told me i was probably just depressed. i went through so much unneeded pain because they were too dumb to think outside the box. and at this point... Lyme should be in the box... its everywhere.

as far as antibiotics go... everyones different. but i recommend listening to your doctor and not the popular opinions of various internet bloggers. all i know is the 1 month treatment cleared my infection. as far as "new symptoms creeping in" goes, i had temple pain which my docs are pretty sure is TMJ related. i would just like to also point out cyclevancouver, that rarely a day goes by on this forum that i don't see long term antibiotic users complaining of new or lingering symptoms. even people who have been treating for years. whats up with that? who knows. good luck to everyone.

Let's tread lightly here, I'm sensing a little tension. I'm not accusing anyone of anything - let's just be careful to not argue.

I happen to agree that we as patients need to do our own research into our infections as well as the other tick-borne infections - simply because we need to know what is going on with our bodies and have an understanding when something is truly going wrong. We can't know this without numerous places to read about others experiences with the different protocols. The more a person reads about these infections the better understanding they will have - and since there isn't a whole bunch written yet (because of the lack of research dollars), we must rely on Dr's - some of which don't really understand what it is that they are trying to treat, and other patient stories. We must remember to take it all with a 'grain of salt' -even what some doctors are saying- and to be very careful to only keep what is good ...and verifiable!

I happen to believe that abx are not the right choice for everyone - but everyone doesn't agree with me on that and that's okay. It's what's right for me, and abx is what's right for those that they work for. What's right for one person isn't necessarily right for another.

There are so many different areas where disagreements can break out because there simply hasn't been enough research done!

The one thing I would like all to remember is that we are all here - kind of in the same boat - and we are all just sharing info that helped us, or we believe might help another.

---

Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

Post Edited (Traveler) : 10/16/2011 10:35:01 AM (GMT-6)

Funny I had started a response alot like Traveler last night but found I was rambling so I deleted it.

Once this disease gets in your central nervous system It can take years to get better

This disease if not treated properly whether it is with coventional antibiotics or Naturals will not stop in its progression

I have met many people that were undertreated and some of them are in wheel chairs and some are not here anymore, some are bed ridden, some have lost all quality of life

The Idsa and Cdc Guidelines for Lyme disease have caused many people to enter into late stage lyme disease because they undertreat this disease

One month of Doxy might work for someone that has early stage lyme disease, But this does not cover late stage neuro lyme disease

Most of the main stream medical community is under Idsa and Cdc Guidelines, They do not understand how to treat this disease for the most part

Most Lyme Literate medical doctors, will treat you two months past being symptom free

Lyme is a very smart bacteria and can change forms as we all know, Many times doxy will cause the bacteria to change form and hide until it feels safe to come out of hiding an Invade the body again , Many people relapse

Then when you add coinfections into the mix this can really complicate things

Finding a Lyme Literate doctor is the best thing I ever did, I am also coinfected with Bartonella

The medicine I was on for Lyme would not touch bart, My doc belives coinfections should be treated first

I use abx and Naturals

There is no one size fits all treatment plan, What works for one person might not work for another

This is really a journey and I will keep all treatment options open, I just want to get better

I agree mystery brain issues from this disease are also my worse symptoms

I hate what this disease has done to my brain,

Hello everyone,

I started treatment with Doxycycline just 3 weeks after I got bitten. Exactly 2 days after I finished the treatment (3 weeks), the brain fog started. I had no symptoms before, just the red rash around the byte. So either the doxy didn't do it's job, or it caused the fog - directly or indirectly. I'm currently at 3rd treatment (ceftriaxone), but as other symptoms come and go, the fog is the same and is by far the most annoying symptom. I am not healed, but I tend to agree with MysteryLyme in that the fog is not directly from Lyme. Can anyone tell me the usual treatment in the US for Lyme (kind of antibiotic and length)? I read somewhere that ozone saunas might help. Opinions?

@MysteryLyme How are you now?

Post Edited (gigipac) : 3/6/2012 7:35:25 AM (GMT-7)

Hi Gigipac!
Welcome to our little spot!! I'm really sorry that you have a need to be here, but you've come to a great place to learn and to share about Lyme and the other co-infections!!

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

I wanted to let you know also that MysteryLyme hasn't been on here in a couple of months, so they may not answer you.

I'm really sorry that you were led to believe that a short course of abx would cure your infection(s). The knowledgeable LLMD's (Lyme Literate Medical Doctors - not Infectious Disease docs), recommend a minimum treatment time of 6 - 8 weeks without any rash or other symptoms.

Actually the brain fog is quite common with Lyme and is very well documented as being part of the symptoms of a Lyme Disease infection. It's due to the die off of the bacteria that causes Lyme disease - when it dies off it produces ammonia that goes to the brain - which causes the brain fog. There's lots of reading that can be done on this subject if you are up to it.

Unfortunately, there is no "standard" treatment for Lyme disease. It always depends on the weak points in a person's body, and we each have different weak points. Although generally Lyme treatments start off with 400 - 600 mgs of Doxycycline a day, and since you've been treated a couple of times with no sustainable healing, chances are that you are now dealing with Chronic Lyme, so no one will be able to tell you how long you will require treatment. Once the bacteria has had the chance to spread through out the body, it gets harder and harder to get rid of.

The Lyme bacteria (spirochetes) have 3 forms that they can change into at will - the spirochetes, the cyst form and the cell-wall-deficient form, and each form must be treated with different abx. www.lymebook.com/top10forms. Co-infections, present in most cases, can further complicate the healing from Lyme disease.

One of the best things you can do is to detox as per the instructions found in the second post (about 1/2 way through that post) about detoxing using dry skin brushing, epsom salt/peroxide soaks, and drinking plenty of water - preferably lemon water as it helps to keep the body alkaline. Bacteria and viruses like a body to be more acidic for their survival. Another things that's really good to help a person with these infections to detox well is a FIR sauna.

Once again, Welcome to our spot on the web!! We look forward to getting to know you through your posts!!

---

Co-Moderator, Lyme Disease ;)

Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

I break up my post because my eyes have been effected by TBI's as well, making long paragraphs very hard to read.

Hi all,

This is mainly directed @Gigpac--were you tested for co-infections? If you have a lot of neuro symptoms, Bartonella is usually involved. Personally, I am about to start trying Dr. Zhang's protocol. I ordered his book and it really made more sense than anything I have read in the last couple of years about lyme. I am not able to tolerate abx, and I don't think they can do the job since the little buggers go into hiding and just resurface later. I think the key is killing them but building up the immune system as much as possible. Anyway...co-infections are probably key here.

hello gigipac.

what ive learned about Lyme is that it throws your entire body and mind out of whack. it effects every aspect of who you are and tears you apart from the inside out... that's why recovery is not easy. many people will continue going to the doctor for their magic pills but what they don't realize is the final stage of recovery will come from within only. i looked at myself a year ago and said no more. at this point i would say im 90% recovered. i did a complete lifestyle upgrade which is what i think is mostly needed for most people in chronic stage. diet, exercise, herbs, sleep, sun. very basic things but we often overlook all of these in modern society. not only am i feeling better but i also lost 30lbs in the past year. so i would continue fighting any way possible but also make sure youre doing this basic things to be a healthy person first and foremost. good luck.

Great post, mysterylyme...this is exactly what ultimately will cure a chronic illness. Even the Law of Cure states that you have to mentally be accepting that you will be healed...and this does not mean that you just say it - you have to integrate it into your lifestyle. Meds and other forms of treatment can help your body in its struggle to kill off the invaders but only we can truly heal ourselves. Good to see you are back to 90% - you'll get to 100% I am sure! I am still in that fluctuating 60% to 90% phase but the 90% days are getting more prevalent than the 60% ones...it's awesome to be on the right track!

Hello MysteryLyme,

Congratulations!
Can you help us by giving us a little more details? What herbs? Did you smoke before? Please answer this question: did you have the fog before taking abx?
I have 3 friends who complained about something similar after a health problem. One is better (at least he's not sure that he still has it) after doing something similar to what MysteryLyme is saying. I asked about smoking because the one that seems to be better quit. The others didn't.

I think it would be very easy to associate the fog with lyme, while it could be just the weakened body after abx. On Wikipedia:
"The list of possible etiologies is said to be "endless". But some examples are:
Candidiasis
Hepatic failure, which allows toxins from bacteria in the intestine to go into the bloodstream and poison the brain.
Heavy metals including mercury.
Medications of all kinds.
Thyroid dysfunction
Vitamin B1 deficiency
"
Except the thyroid dysfunction, as far as I know, all those other things can come from abx. Don't get me wrong, I know I would probably be much worse without the abx, but the fog could easily be a side-effect.
I did Candidiasis test but it seems I don't have it. I'm still waiting for some results on this.
I personally believe that it might be the weakened liver.

@savena. Thank you. No, I haven't been tested for Bartonella, but I guess the treatment is the same. Isn't it? Anyway, I'll ask my doctor about co-infections.

Gigipac...most likely, the fog is Lyme -induced and not because of the abx except for the fact that the abx is killing the Lyme and increasing the fog
I know this because I have had episodes of Lyme all my life without knowing it to be Lyme until this past June. I would get one year flares of it at roughly 5 year intervals and since I did not know it was Lyme, I had no abx. I exercised through them then. Yet I got tremendous brain fog and the other neuro Lyme symptoms lulled spaciness, trouble concentrating, anxiety, etc. If you have Lyme, you will generally have some level of cognitive impairment including brain fog. The abx are not the culprit. Cure the Lyme and all the other hormonal imbalances go away and your liver function gets better and so the brain fog clears ad well. Lyme is a crazy disease and causes all kinds of havoc in the body and mind. It's best to work at clearing it and not going on too many other wild goose chases...take it from one who now had 35+ years of experience with this disease.

Yazzer... Thanks .. Your Info has helped me alot and given me Hope as I suffer from brain fog, hormonal imbalances , trouble concentrating and anxiety . low functioning adrenal glands which has caused Hypoglycemia and the list goes on and on ...   Thanks again for your Info here ....  :)

Hello-
New to the form. Have been chronic Lyme and coinfections and have been treated for the past 5 years or so. Throughout his time I have struggled with brain fog and memory issues off and on. There is not one cause of brain fog I have found and different remedies seem to help.

Some one of episodes have come form yeast or Candida that sets in after a course of antibiotics. In spite of my efforts to take Priobiotics and cut out almost all sugars etc. My candida protocol is Nysatin and Diflucan. The Diflucan has been pretty miraculous in bringing back form brain fog symptoms that have had me questioning my ability to do my job.

I find it takes three to four weeks to clear out and regain normal functioning. An there is enduring the die off, which I have found molybdenum very effective in helping mitigate die off symptoms and rid toxins created from die off as yeast gets wiped out.

As mentioned above, not just one cause of brain fog, but if you just finished a round of antibiotics and were not militant with probiotics, eliminating sugar, white flour, alcohol and you find yourself with brain fog and memory problems 2-4 weeks after. This is something to check out with your doctor.

My tests from before the last treatment came. The treatment is working.
The fog is still here though. Candida tests negative (urine, saliva). I thought before of taking the treatment with diflucan/fluconazole as I knew it might be some yeast crap after abx.
I'll try these drugs as I don't have anything to lose and get back to you.