# Derealization and lyme disease: tracking my progress journal



## kcs (Aug 12, 2004)

After suffering from derealization for over 15 years, I was just recently diagnosed with lyme disease which had been missed for who knows how long. I thought it might be a good idea to keep a simple journal of my progress with treatment and hopefully recovery, in the hope that this may help someone else out there. I have yet to start treatment as my doctor is having me wait until I am done nursing my baby, which we have decided will be in March - he will be one year old at that point. Since treatment won't be starting until late March or early April, my postings may be sparse until then, but feel free to ask questions or discuss whatever - I will try to check in as often as possible.

Probably best to start off with some history though, as I realize a lot of people probably don't remember me from way back when. I was posting here a lot for a few years up until about 3 years ago when I had my first child, which distracted me from posting much, and honestly did a good job of distracting me from the derealization - it didn't go away or even get better, but I wasn't focusing on it as much because I was too busy and all my focus was on my new baby. So it has really been about 3 years since I have posted on this board regularly. I think the only people who are still here that might remember me are Revelation and Dreamer, if anyone else is still around from back then, do give me a holler!

(*I have edited this some, for privacy's sake. Thanks for understanding.)

Anyhow I have had lots of little nagging weird physical symptoms cropping up over the years, and gradually getting worse, like worsening stamina, weird pains (foot, jaw, wrist, etc), interstitial cystitis, memory problems, coordination problems, you name it, it would take a novel to write them all down here. I honestly didn't put a lot of them together, just assumed I drew the short stick in terms of health. I did manage to associate the memory and cognitive problems with the DR though, and the fact that they were all getting worse prompted me to start scouring the web for answers. Discovered a thyroid problem, with some unusual test results which led to suspicion of a pituitary problem - finally found an excellent endo who confirmed a pituitary tumor and got me on various hormonal meds to treat it. I did experience some improvement in some of the symptoms, so honestly at that point I thought I had my answer, and stopped looking further. Didn't feel well by any stretch of the imagination, but I was willing to accept some improvement as better than none, and decided it was time to think about kids, and my husband agreed.

Fast forward to after my second baby was born (the one I am currently nursing), and my symptoms started getting worse again, despite all my hormones being adequately medicated. New symptoms started cropping up also, more joint pains, more dizziness, morning sickness never went away, etc. It was starting to dawn on me that perhaps the pituitary tumor might not be the entire problem, after all, the doc said it wasn't a big one, and was surprised at the level of pituitary dysfunction from it. Too busy with the baby to really look into it in too much depth though, but getting increasingly concerned about how much things were getting worse.

I had briefly thought about lyme, I think it was on the original dp board actually that it had been mentioned, but for whatever reason never followed up on it. Then earlier this year the brother of a friend of mine was diagnosed with lyme, after being misdiagnosed with multiple sclerosis for 20 years. Something clicked in my mind about what I had read previously about it, and I got to Googling. Found some websites with symptom lists, and it was like reading a biography of the weird health problems I had been having for years. Then I found a few mentions of derealization as a symptom of lyme too. Honestly, over my years of searching I had come across a number of things that had some similarity to the symptoms I was experiencing, but nothing that covered all the problems, not even the pituitary diagnosis could explain everything. Until this - even the interstitial cystitis was listed as a common symptom of lyme - that was something I had always written off as a problem in it's own right, and never had connected it with the other problems until now. That was too much of a coincidence to ignore.

So I did some more reading online, and searched out a knowledgeable LLMD (lyme literate medical doctor), and got an appointment (4 months later, LLMD's are few and far between, and tend to be booked well into the future). Had a very comprehensive appointment, and she ran a battery of tests, including a Western Blot test from Igenex (best lab for lyme testing), and a number of tests for common co-infections. Lyme tests are notoriously inaccurate, in that only about 60 percent of people who actually have lyme will test positive on the current tests - there is an extreme need for better tests. So even though I was pretty convinced that it was lyme, I was mentally prepared for a negative test result, and a fight to get treatment. But lo and behold, my test results came back with a positive IGM Western Blot - not only positive, but also positive by CDC standards, which are more rigorous than the lab standards. I also tested positive for babesiosis, which is one of the co-infections commonly found with lyme.

So that is where things stand right now, my doc and I decided it was best to wait until I was done nursing my baby to start the meds (had it been discovered before we began nursing I probably would have done things differently, but having nursed for 5 months before being diagnosed, this seems to be the best plan at this point), so we have decided on the 1 year mark as the time to wean.

So yea, a very confusing and convoluted road to here, and likely had I not had the pituitary tumor, then this would have been diagnosed much earlier. But with a very convenient scapegoat for the derealization, I didn't look further until just recently. But then again, lyme disease has not really been on the radar until recently, so it still might have gone undiagnosed for quite some time. I have likely had this since my late teen years, no, I don't remember a tick bite, but many people with lyme don't - the ticks can be tiny, can hide in hair or just not get noticed, and not everyone gets the telltale bullseye rash. I do remember friends finding ticks on them after we had been partying up in the hills during high school, and my area is a hotspot for ticks (California bay area). And yea, it is always possible that I got it earlier on a camping trip with my family, but there is really no way to know when I got it exactly. All we know now is that I do have it, and it is making me very ill, and progressively worse. Evidently it is common for an injury, or pregnancy, or other stress on the body to cause it to worsen, which is what happened with me - the birth of my second child, via c-section, definitely caused a severe worsening of symptoms.

So that is where I am now. Three more months before I start treatment, and from all accounts it will get worse before it gets better - I will try to explain a herxheimer reaction in another post, but suffice it to say that as the little buggies are killed off, they make the symptoms worse before they improve. That won't be fun. But I will try to post and keep ya all apprised of my progress. That is enough for now, my brain hurts from all the typing. More later...
-karen


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## kcs (Aug 12, 2004)

A good article on lyme and psychiatric issues just came through my online lyme group today, thought it might be worth posting - 
Lyme Disease, Comorbid Tick-Borne Diseases, and Neuropsychiatric Disorders

Here is another good article that I found awhile back that lists a lot of very specific symptoms, including derealization and depersonalization - Lyme Disease and Cognitive Impairments

-karen


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## kcs (Aug 12, 2004)

I have just been feeling so crappy the past week - very dizzy, and I am starting to get more muscle problems - my muscles just feel weak (aside from being achey), and last night I was feeling as though my legs might just give out underneath me, and was having trouble with my hands. I just hope I can last through March, I really don't want to have to stop nursing my baby before then, I am just not ready for that yet. I didn't start having so many problems with muscles and joints until recently, after he was born - evidently it is common for lyme symptoms to get worse after a birth or after a major physical trauma (does c-section count also?). I have had some pain problems for years, TMJ and plantar facitis (sp?), but not to this degree. The cognitive stuff I have had all along, but that has gotten dramatically worse since the birth also, DR included.

It is my understanding that the DR and many of the other cognitive symptoms are due to the inflammation in the brain which is caused by the lyme - lyme encephalopothy (I am certain that I spelled that one wrong - ya think?). At my last LLMD appointment I got back some test results which measure inflammation somehow (the tests are still rather new and still in the experimental phase). My C3a was within the normal range, but my C4a was through the roof, almost 10 times the upper end of the range at 25,515 (range is 0-2830). What my doctor explained was that if the C3a is high, that indicates that inflammation is due to an autoimmune reaction, like lupus (which was a differential diagnosis which had been ruled out prior to that), but if the C4a is high, that indicates that the inflammation is due to an infection, like lyme. She said mine was the 3rd highest she has seen, so I guess it is pretty high. High enough for her not to be pushing as hard for me to get the SPECT scan, which I understand can show a distinctive pattern for lyme. Still don't know if I am going to do the SPECT or not, that would also be for after I am done nursing because of the radioactive isotopes or whatever they shoot you up with beforehand.

Anyhow, gotta change a diaper, so I'm off for now...
-karen


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## kcs (Aug 12, 2004)

Just testing my siggie, this is what I do to try to distract myself from DR and being sick...


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## mazou (Jun 12, 2007)

Karen,

I am happy to hear that you are about to embark on your road to recovery, and congratulations on your new baby.

I posted a few months back about having tested positive for Lyme (only acute, not chronic, but the test may be inaccurate, as you say). I was beginning to see some cracks in my DR after the doctor put me on 3 weeks of antibiotics. After that I put myself on a fabulous herb named Una de Gato, which is supposed to cross the blood-brain barrier and really get "in there" to clear up the infection.

But, being the mother of a now 1 year old, and running a home business, I became distracted, and stopped taking the Uno de Gato (I have just ordered some new bottles).

I don't know what helped, the antibiotics, the Uno de Gato, or both.

But I think we may have some similar experiences. I really went off the deep end after having my daughter via c-section. The DR got worse than ever, and, being completely in love with my little daughter, was afraid that I would miss being truly "there" there with her. So, I resolved to cure this whatever it takes.

Back on the road to recovery. Thanks for all the great information.


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## mazou (Jun 12, 2007)

Aha!

I just looked through the archives and realized that you are the same Karen that replied to my post a few months ago.

How interesting. So, you have found out a lot since then.


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## kcs (Aug 12, 2004)

Hi Mazou, it is good to hear from you! Yes, I am the one who posted awhile back. So was your doctor willing to give you antibiotics for longer than 3 weeks? If you are still having some symptoms, maybe you need to take the antibiotics for longer - I have heard that you should take it for two to three months after symptoms are completely gone, to make sure you have eradicated the spirochetes because of their long and complex life cycle. I will look into the Uno De Gato also, I think that combining antibiotics with supportive alternative methods is probably the best route, at least talking to some of the long timers in my local lyme group they always say that the only people who really get better are those who use antibiotics. They haven't seen anyone get better solely on alternative meds, but that combining the alternative methods with antibiotics works for a lot of people.

It sounds like we are in similar situations with the kiddos - it is so hard dealing with this stuff while taking care of little ones, but they also make it all worth it, don't they?  I'll have to go read your story again in your other thread, but do keep in touch, I'm hoping you make a complete recovery and would love to chat more about this stuff.
-karen


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## kcs (Aug 12, 2004)

I started a thread in the Medical Explorations section for posting more info about lyme, studies and articles and such, so as to keep this thread mostly about my own progress. All the technical gobbledygook will go in the other thread - http://www.dpselfhelp.com/forum/viewtopic.php?t=14103

Waiting to start treatment is HARD. In case you missed it, my doctor and I decided to wait until my baby is done nursing, so when he is a year old, which will be in March. I am looking forward to finally getting to move forward on treatment, but weaning him this early is going to break my heart, and will be really hard on both of us I'm sure. So like many things in life, it is a mixture of anticipation and dread. Just biding time until then really.
-karen


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## kcs (Aug 12, 2004)

Just a quickie update, still haven't started treatment, but as soon as I wean baby I will. Trying to night wean, which is proving to be difficult for both of us, then when he turns 1 in two weeks then we will try to finish the weaning. So hopefully by the end of March or early April we will be good to go.

I had a good conversation with one of my friends from the lyme group that I belong to - she had DR symptoms when she was really sick with the lyme, and she said that the Herxheimer reactions for her involved worsening of her physical symptoms (achey, flulike stuff), but not a worsening of her cognitive symptoms. And that of the people she knew who had bad cognitive symptoms, for the most part it was similar for them - the herxes were mostly physical, and the cognitive didn't get worse. She said it took about 6 weeks to start noticing a difference in her DR and other cognitive issues. So hopefully it will be similar for me, but who knows - I know one guy who was on treatment for two months before his cognitive improved, and other people have to go a lot longer, or switch meds before they see a difference. So it all remains to be seen I suppose. But that was good news hearing that it isn't likely to get much worse, as that is something that I have been very worried about.

Anyhow, getting closer to being able to start this crazy treatment, so that is good at least.
-karen


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## Surfingisfun001 (Sep 25, 2007)

Cool Karen I really hope you get to start soon. Does everyone have that reaction you were talking about?


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## kcs (Aug 12, 2004)

Hi Kenny, no, not everyone gets herxheimer reactions - I don't know the percentage though. Some people get them on certain antibiotics and not others also. A friend of mine has had some really difficult herxes on Bicillin, but not on Amoxicillin, so I guess it is different for everyone.

When is your follow up appointment?
-karen


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## kcs (Aug 12, 2004)

Update - in the process of weaning my baby, and my appointment with the doc is on Friday, so that is when I will be finally starting treatment. I am nervous, nervous about symptoms getting worse, nervous about not seeing an improvement, nervous about not knowing what to expect at all. And the weaning sucks, this is making me very sad, but I know it needs to be done. Counting the days at this point....
-karen


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## Sabrina55 (Dec 23, 2007)

I know how that feels.. I feel like i wont be able to get treated. I have actually turned to God and ask for his help. It gives me so hope. I just hope everything will turn out BETTER... keep me udated on ur progress..

-Sabrina :wink:


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## kcs (Aug 12, 2004)

Well, I had my doctor appointment yesterday, and am starting the meds today. I am nervous, not knowing how bad the side effects are going to be, and it might be awhile before they start working. The gal who runs my lyme support group says she thinks my cognitive symptoms sound like mostly babesia, which is what the first treatment is supposed to target, so here's to hoping this works! Keep your fingers crossed for me folks!
-karen


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## kcs (Aug 12, 2004)

Ok, so I feel like crap at the moment, DR is much worse, plus all sorts of other weird symptoms, like stabbing pains in my head an elsewhere, and my hands are all tingly and numb, nausea - I think this is definitely a herxheimer reaction hitting me, which is supposed to be good because it means the abx are killing the buggies, but it sure is making me feel crappy. I hope this doesn't last too long, feeling this bad sucks.
-karen


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## mazou1 (Mar 9, 2008)

Hi all, and congratulations on starting your treatment. I am awaiting my lyme retest which I will receive results on Wednesday. I am actually praying for a positive, so that I have someplace to start! I had only received a small positive in the past, which did not allow me to receive much medication or special care.

But I think this is the turning point. Keep posting with your progress.

Maura101


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## kcs (Aug 12, 2004)

Hi Mazou, that is great that you are getting retested, are you seeing an LLMD? I know what you mean about praying for a positive, when you are this sick, an answer is better than no answer, even if the recovery is difficult. Keep me posted, ok?

I have been having a rough week, having some digestive problems after adding a second antibiotic, so I stopped the antibiotic, and the doc's office told me I stopped too soon. They told me to wait for things to calm down and then restart (I am still taking the Mepron and Artemisinin) the abx, but things have been up and down with that, so haven't been able to restart yet, which feels like a total setback to me. Hopefully I will be able to restart in a few days, but at least I am still taking the other two meds. Been having lots of hot and cold spells, which might be a herx reaction, in addition to the increased spaciness. Fun times, but this is how it goes I suppose.

Mazou, have you been to the lymenet.org message board? Lots of knowledgeable people there. Keep me updated on your test results, ok?
-karen


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## kcs (Aug 12, 2004)

Definitely a setback, major belly troubles, so I was told to stop everything until it resolves, than restart one at a time. Ironically I think it is my thyroid meds that are messing with me, not the lyme meds, but those were just adjusted, so hopefully tomorrow or the day after I can restart. 
-k


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## kcs (Aug 12, 2004)

Just a quickie, finally back on the meds - will keep ya-all posted!
-k


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## Surfingisfun001 (Sep 25, 2007)

Cool, hope the treatment is going well for you.


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## kcs (Aug 12, 2004)

Thanks Kenny, I will definitely post when things start improving. How are things going with you? Did they ever figure out what the parasite was? Wondering if it might be babesiosis, that is the co-infection I am being treated for as well, and evidently it can cause major cognitive issues. You said you were taking Artemisinin for it, right? I am taking that along with my other meds. Give me an update when you have a chance, ok?
-karen


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## Surfingisfun001 (Sep 25, 2007)

Hey Karen. They found parasitical activity but I've already treated that. Just took some strong herbs (wormwood and fen cho) for a few weeks and bam, they're gone. Didn't affect my DP but I no longer have stomach aches 24/7  The DP is manageable for me right now. I'm trying to work through it with therapy type treatment. Eh, well see how things go. I'll let you know if anything significant happens, and you let me know too.


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## kcs (Aug 12, 2004)

Well, I knew it was going to get worse before it gets better, and yea, the past weeks have been hard. Just have to keep the end goal in mind, I'll get there eventually.
-k


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## Guest (Jun 1, 2008)

I'm gonna go whoop my doc's ass soon because the odds are 50/50 that I have Lyme disease... and he doesn't want to know anything about it,


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## kcs (Aug 12, 2004)

Yea, most doctors don't know much about it, and really don't want to it seems. Hopefully that will change one of these times, but right now the politics are really getting in the way of diagnosis and treatment. Hey, I found another good website that you might want to check out since you are in europe - http://www.lymeneteurope.org/, you might be able to get a good lead on a doctor there. 
-karen


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## Guest (Jun 2, 2008)

Thank you =).


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## kcs (Aug 12, 2004)

This weekend I saw the movie Under Our Skin, awesome movie, I can't recommend it enough to anyone wanting to learn more about lyme disease, and the controversy surrounding it. Amazing movie, artfully shot, comprehensive, and really gets the point across about what is going on currently with the lyme wars. They are currently working on securing distribution for it, it is doing the film festival rounds right now, and there are a few community screenings planned which are listed on the website. You can also get a prerelease version (movie only, no extras) here, that is how I was able to see it - you want the home version, which is about $34.

Also, the book Cure Unknown by Pamela Weintraub just came out yesterday, and is getting rave reviews - she is an editor/writer at Discover Magazine, so her approach to science writing is very sound. I picked up a copy at Barnes and Noble, they had it already at the one I went to luckily, it will probably take me awhile to get through it though, since my reading abilities have really suffered due to the lyme. She goes into great detail about the controversy as well, and has some amazing insights into what is going on. Amazon link

FWIW,
-karen


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## kcs (Aug 12, 2004)

Just had a doctor appointment today, and she is going to be switching up my meds. As soon as I am done with the current bottle of Mepron, I am supposed to discontinue the Zithromycin as well, and a week later I will be starting Rifampin. She is thinking that the DR and other cognitive issues could be bartonella, so I guess we will see if the bartonella meds make a dent in it. Interestingly enough, there have been a few threads on lymenet talking about dp/dr, and most people seem to think it is bartonella rather than babesia that is usually the cause. Mazou, you said that yours had lifted awhile back when you were taking Cipro, right? That is a bartonella med as well, is that what you are on currently or no? The Rifampin will attack the lyme as well as the bartonella, and I am still going to be taking the Omnicef, which is more directed at lyme. Wish me luck!

And I just finished reading Cure Unknown by Pamela Weintraub, and all I can say is WOW - amazing book, it really explains the medical/political debate surrounding lyme and how it became such a mess. Necessary reading for anyone trying to understand what is going on, and why it is so difficult to get treatment for it. Read this book, seriously!
-karen


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## mazou (Jun 12, 2007)

Yeah, the Cipro really worked for me. But that was YEARS ago, at this point, so it is taking longer to show an effect. I think you are on the right track, though.

I had a visit with the neuropsychologist, and he said that, while my verbal processing and computation skills all test very high, my visual processing tests in the 25th percentile, or very low. This makes a lot of sense when trying to relate the physical symptoms to my derealization. It does not refer to eyesight. I just, essentially, cannot process or conceptualize what I am seeing.

He tested this "visual processing" by showing me flashcards of pictures with something wrong (e.g., a man missing his nose), and I had to figure out what was wrong or missing. I bombed! But it made me realize that this is how I have been living my life while in this state of derealization. I have been just making it up as I go along.

Interesting stuff.


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## kcs (Aug 12, 2004)

Just a quickie update - hard to tell, but I may finally be seeing a *tiny* bit of improvement? A few weeks ago I was definitely herxing, and DR symptoms were through the roof, but they finally leveled off about a week ago. I have been trying to keep a chart of symptom severity, about once a week, and it does seem that a number of symptoms are a tiny bit better perhaps. Of course when it is all just shades of awful it is kindof hard to discern a difference, but judging from that, there might be some improvement. I did have a big jump in my hormone levels according to my latest blood tests, which is really interesting, so the meds are definitely doing something! Big jump, which is really exciting for me. Nice to see something concrete, even if it is hard to tell cognitively how much improvement is going on. I must say, I would love to just wake up one morning and have the DR gone, but it may not happen that way, it might be a much more gradual thing than that, which isn't quite as dramatic, but hey, I'll take what I can get, ya know?

So anyways, doc appointment was Wednesday, and I just started another new med, so things may get worse again before they get better, and I think I am due for another herx anyways, so the next few weeks might be difficult again. We'll see, it is definitely an adventure...
-karen


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## lemongirl (Mar 4, 2013)

How are all of you doing? I have had derealization for many months now and figured out it was lyme.I am being treated for it right now with antibiotics (just started today), and have been doing some other homeopathic/herbal remedies (for a couple of months prior). They have helped some, but it has been just such a gradual improvement that it is hard to tell. I am very interested to hear how you all are doing!! This thing is a nightmare and I'm ready to kick it in the butt!! Wishing you all well~ (p.s. Karen, I am also reading Cure Unknown. It is a wonderfully written book, lots of interesting information that paints a perfect picture for the controversy)


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## Johanna1980 (Mar 21, 2018)

kcs said:


> Hi Mazou, that is great that you are getting retested, are you seeing an LLMD? I know what you mean about praying for a positive, when you are this sick, an answer is better than no answer, even if the recovery is difficult. Keep me posted, ok?
> 
> I have been having a rough week, having some digestive problems after adding a second antibiotic, so I stopped the antibiotic, and the doc's office told me I stopped too soon. They told me to wait for things to calm down and then restart (I am still taking the Mepron and Artemisinin) the abx, but things have been up and down with that, so haven't been able to restart yet, which feels like a total setback to me. Hopefully I will be able to restart in a few days, but at least I am still taking the other two meds. Been having lots of hot and cold spells, which might be a herx reaction, in addition to the increased spaciness. Fun times, but this is how it goes I suppose.
> 
> ...



Oh Karen, I'm so so so sorry you went down this trail. I did as well and realized it was not for me. The lyme ppl will convince anyone that they all have lyme. I felt horrible on the antibiotics and all they did was mess up my gut microbiome!! How are you feeling now?


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