Greetings -- and condolences that you're hitting a rough patch.
That's quite a roster of concurrent meds you are taking, so there is much activity going on internally. That you were and are progressing so well is a very positive sign, I would think. Many of these infections rise and fall, sometimes seasonally and other times without reason - esp. with more than one infection concurrently.
You say, "Especially the weeks when my anxiety was my lowest, I felt (gasp) normal again." This is good, because it means things are going in the right direction --- having a good stretch is excellent, and then anxiety can be a symptom of a flare up -- which is progress from feeling lousy ALL the time. Note that emotions are hormonally driven, and tickborne infections often affect the endocrine system significantly, and the more active they are, the worse you will feel -- and at the same time, when you are feeling better, you are getting the upper hand against the bacteria.
One thought about the sudden increase in symptoms is that the body and the infections seem often to be attuned to the seasons, and the days began to get longer again on Dec 21, the winter solstice. That might be having some effect; I just searched online for
--- lyme disease seasonal symptoms ---
and found quite a few references and comments on just that. We passed the winter solstice 3 weeks ago, so spring is coming, and the bacteria may well be stirring.
I would check in with the doc, reporting the symptoms in person or in a written note to the doc -- the important thing is to give the doc enough detail (as you did here) to note this as a significant upswing in specific symptoms that need attention promptly. (I have found the hard way that telling a nurse or receptionist what my symptoms are too often ends up being reported to the doc as 'patient not feeling well' -- but more detail is needed so the doc will take action. Don't be afraid to be a bit of a pest to get in to see the doc or at least talk to him/her on the phone.)
Suggestion: Describe to your doc the details of your current condition just as you did in your post above. Whether you have another, hidden infection is something the doc should consider, just as you have noted it.
In an article titled "Seasonality of Cat-Scratch Disease" [meaning bartonella, a common co-infection of Lyme] as published by no less than the Centers for Disease Control (CDC), the link between seasons and cat scratch disease incidence has been described in the United States (5,6) and in Japan (7) [footnotes are in the article, fwiw]:
Emerging Infectious Diseases
Volume 17, Number 4—April 2011
Seasonality of Cat-Scratch Disease, France, 1999–2009
You might try upping your intake of magnesium (Mg) -- it is very soothing, and the Lyme bacteria use it up in their reproductive cycle, so as spring awakens the hungry bacteria, your Mg levels may fall, resulting in feeling anxious and out of sorts. Any kind of magnesium ending in '-ate' is most absorbable, so I understand: Mg malate, orotate, aspartate, etc. Those with Lyme often have low levels of Mg. Drinking milk is another good way to increase Mg too.
I didn't have bartonella, so I am not clued in on the likelihood that bart is annoying you. Run through the list of bart symptoms and see if it matches how you are feeling, and then report to the doc if so.
"Did I uncover another coinfection that was lying dormant?" Possible, and something to ask your doc.
"Or am I just in the general Lyme loop of fun?" :) Hang in there.
"My current plan is to try to get on some anti-anxiety meds ASAP" -- bring that up with your doc, and put the suggestion in your note to him so the office staff doesn't accidentally leave out your question, if you get my drift.
"... I just feel so bad b/c it felt like I *almost* there and now the anxiety makes it feel almost back to square one :( " I hear you. Because of the life cycles of Lyme and the concurrent seasonality, it may be hard to tell exactly what is causing what, but that's what the doc went to med school for.
If your doc isn't the type who will call you back or get you in for an appointment quickly, then write a reasonably details note and make sure it gets to the doc's office. Be a nice pest, but be a pest. So go toss back some Mg and see how you do -- let us know, okay?
That's sure a lot of abx at one time if that's the case. I'd heard that Rifampin dilutes Doxy's effectiveness...something you may want to check out.
As far as the anxiety, after reading your post the first thing that popped into my mind was that the anxiety is coming from your gut...Candida overgrowth from all of the abx. When taking abx, I also took probiotics in between my abx doses throughout the day, but I found it isn't always enough to stop the Candida, especially if my diet went of track and I included a sweets binge.. Nystatin, Fluconazole, or actually Olive Leaf extract helped me a great deal. Also, fish oil helps with the anxiety as well (I always seem to do better if I eat fat/oils before eating any carbs), but I think your main problem may be Candida. Of course, check for contraindications with your current meds and supplements intake before adding them. Anxiety is rooted in a physical cause, and in my experience and opinion, although I've used them short term in the beginning, anti-anxiety meds are a dead-end road that almost always end up making the anxiety worse. The panic and anxiety episodes that I get are almost always related to diet and Candida...I hope this helps you TC!
I just read Maverick's quite interesting comments -- be sure to flag them with your doc. And keep us posted.
I have been fighting Bartonella for 3 years. For me it is worse than Lyme. Anxiety and other "mental health related" symptoms are very common. I had lesions on my brain from bartonella but not everyone gets them.
I did 2 years of ABX and many people including myself took rifampin and zithromax at the same time as Doxy with no problems.
I belong to a large BARTONELLA support group on Facebook which includes an occasional LLMD giving his advice.
Thanks for the reply Maverick,
I misspelled it in my post, but yes I am taking 200mg Fluconazole once/week. I unfortunately had a mild yeast issues before my infection (daily fatigue), and yes, before I started taking it I had earlier anxiety, esp. when I started to get neurological issues from the yeast.
I'm on a partial Candida diet, partial because the abx make it impossible to determine how satiation levels, so I'm constant eating, esp. foods in high in fiber. But no sweets, low amounts of fruit, lots of veggies/meat.
I'm also taking 60-80 billion cultures of probitiocs daily with keifer as well.
But still, it feels like very little 'sticks' in terms of food -- perhaps the same for the abx?
Thanks for the words of encouragement Jackie,
My LLMD has been fantastic and we had met every 4 weeks and I give her my laundry list of everything I documented, but we had decided to push it 6 weeks since I was starting to improve. Figures, right?
She has a sort of 'hot-line' where I've funneled my anxiety-panic questions to and this time she told me to see a lyme-literate pyschatrist, which definitely alleviated some anxiety...but said pysch hasn't replied :(
I've definitely shifted my drug schedule to put the Mg in the morning, so it makes work more manageable -- and I've gotten short term disability to work from home since I had a panic attack driving to work (and I expended so much energy to just literally sit in my office), but I'm still having strong issues just leaving my house or being alone.
But I definitely agree with this cold weather - costochondritis got worse, less exercise always kills my mood (seasonal affective disorder - taking lots of vit d3), fun fun fun.
Don't worry -- you're not crazy -- with Lyme, it's the biochemical effects of the Lyme infection. Are you taking magnesium (Mg) supplements? That's very helpful in soothing and sleeping. I had one nonLLMD sneer at me when I told him I was taking Mg (and this was a very experienced, highly credentialed doc), but I kept taking it ... and still do so, seven years post-Lyme. Very soothing stuff.
You might look for a Lyme support group -- this site was my support group, but sometimes more is better and in person is good. My motto: 'whatever works.'
Were you fairly anxious pre-Lyme? If you weren't, then I'd question your doc's diversion to a psych, but doesn't mean it won't help. Just don't blame yourself! It's the bugz.
No anxiety at all prior to Lyme actually - to the point that I just assumed anxiety was equivalent to stress. So a huge part of the process has been identifying and understanding what anxiety is and what it does to the mental and physical states.
I assumed her decision was to defer me to a pysch was so the latter could better prescribe an anti-anxiety drug..? The pysch is also Lyme literate, so that helps as well; but I'm also wondering why my LLMD didn't prescribe any herself. When she recognized my anxiety a few months back, she just upped my Rifampin so I could kick the bartonella out.
Like my first post said, I'm just a little concern that it worsened after a period of doing well.
I'm rather confused myself about the anxiety vs stress factor generally ... I used to react to stress as only a positive thing, causing me to focus more intensely, but never getting wigged out or stressed at all. I rather enjoyed the focus on what I was doing.
When I was a teen and young adult, others would ask me how I managed to thrive on stress. I didn't have an answer, and still don't. As a teen, I responded once to my mother's inquiry about my noticeable calm before a major event that 'I sweat on the inside' -- which promptly became a family joke. I really had no idea, because stress was not a bad thing for me, but as more years go by, I don't tolerate stress so well anymore, and I appreciate more how others are affected by it.
So I think we're each wired differently, and that we may change over time too. Dunno. Since mood and emotional tolerance are variable factors in subtle and not so subtle ways, it is reasonable that Lyme (through its effects on the endocrine system) can indeed throw a few curve balls in that direction.
I find that magnesium supplements are quite helpful, even now ~7 years postLyme. I don't do meditation (too easily distracted, ha), but I like to walk and I still (post-Lyme) take Mg, which I never did pre-Lyme. It could also just be the passing of time.
I'd say try different things and see what works, and keep your doc posted on what vits and supplements you are taking at what level. Life's a mystery!
I admit, I sometimes needed stress as well to get one or two projects done. I suppose I was negligent on how much was subconscious vs conscious.
Thanks for all the insight Jackie!
When you get it figured out, clue me in, okay?? :D
After responding to your post the other day, I've kept thinking about the past nearly 4 years in which I've dealt with panic and anxiety (with random fears of being alone as you describe - I get it!) and what I have found to be the causes, and what I have found other than meds, to help. I truly think that anxiety has a physiological root. As you know, it can come on seemingly out of the blue. For instance, for me, I have experienced anxiety as a result of the following (in no particular order):
Candida: Treat/treated with probiotics (80 to 100 billion daily), Nystatin, and Fluconazole, and Candida diet (VERY limited carbs and no sugars). Google the signs or symptoms of Candida and see if it fits...
Hypothyroid & Hashimotos (went gluten free 2 years ago) and take 1/4 grain of NatureThroid (although I swear that some days it makes me dizzy)
Adrenal Fatigue: don't overdue the thyroid treatments
Lack of Fat in my Diet: Yes, even healthy saturated fats (read "The Great Cholesterol Myth")
Food Allergies: This one is big for me and I think very important for all, not just those of us dealing with Lyme, to determine our individual allergies and sensitivities...I even noticed that I would have anxiety hit in the mornings out of nowhere after taking a probiotic - turned out it was the dairy in the supplement. Switched to dairy and gluten free probiotics in addition to going dairy free and the problem stopped. I would have the most strange reactions to foods that could hit in as little as minutes (digestion starts in the mouth) and others a couple hours later (gluten made me feel like I was drugged and wanted to sleep)
Constantly researching symptoms - When we don't feel well and are constantly experiencing new symptoms that doctors have no answers for (especially before we found out we had Lyme complex), we turn to doing our own research. We all know of the good and bad involved here - we learn things that may provide us clues and some, albeit temporary emotional and/or intellectual comfort, as well as the things that scare us to death and create even worse anxiety. By putting our brains into constant "executive problem solving mode" which requires the greatest amount of brain area usage, we rapidly burn through the nutrients, neurotransmitters, and so forth that our brains need to function at a high level. If our gut, for instance, is not healthy (where the majority of serotonin is produced, for example) or we are not replenishing these sufficiently through a healthy diet and we are unable to deal with stressors due to our depleted state, then we go from a "problem solving" mode to a "problem finding" mode which incorporates less brain function and the more "primitive" areas of our brains such as the amygdala. This is a very small part of our brains (size of a walnut I've heard) where we store traumatic experiences and is involved in fight or flight responses which we all have experienced. Interestingly, the amygdala, in addition to storing traumatic experiences, responds favorably to things like music and dance. You, may have for instance, found that you feel less anxious when you listen to or sleep with some pleasant music playing. My point here is that I have found it very important to take "brain breaks" and give it adequate "down" time, do our best to ensure we have a healthy gut, and live/eat as healthfully as possible given out circumstances, and incorporate pleasing music, and try to develop or maintain healthy diversions as best we can. Especially avoid doing research at night when we need to let our bodies slow down and prepare for sleep. When we push through this and keep going late into the night, we put ourselves on the path to cortisol reversal where levels are higher at night and lower in the morning (and feel it too) which is just the opposite of what our bodies should be doing. It's about managing the when and for how long...
Eating carbs or sugars that cause a release of cortisol from already fatigued adrenals.
Metals toxicity: For me, mine started about 9 years ago after doing myself a "big favor" and having all of my Amalgam fillings taken out. Problem was, I didn't go to nor had I ever heard of a "biological" dentist. Within months, I started to notice things like horrible brain fog and not being able to remember the names of people I knew when I ran into them and such as that. Of course, I never put the two together until the past couple of years. My mercury toxicity was made worse by following the incorrect protocols given me by an NMD and another holistic doctor. I currently follow a protocol developed by Andrew Hall Cutler "Amalgam Illness", a book worth reviewing, in my opinion, if you suspect mercury is an issue. Some authors I have read have stated that mercury and Lyme, coinfections, and bio-films go hand in hand, and that when we kill them off and disrupt bio-films, we move mercury around.
Nutritional deficiencies: Certain Vitamin and mineral deficiencies can cause anxiety...B vitamins (don't overdo the B6 as it is the only B vitamin stored in the body and too much can cause neuropathies - many doctors don't even know this)
One thing I tried for anxiety was Garcina Cambogia. It is widely touted as a weight loss supplement. I understand that it works because it blocks a particular liver enzyme that causes us to store fat and helps the gut to produce serotonin. This added serotonin helps us to feel better and in turn, it curbs our "emotional eating" and we lose weight and body fat. For a long time, I would avoid sleeping during the day because I paid for it with anxiety that followed for hours. One day, after having taken the GC for a few weeks, I was so tired that I took a nap even though I feared I'd wake to anxiety. To my surprise and relief, I awoke without the anxiety! I'm certain it was the GC. I would just take one capsule in the am and one in the early afternoon (I wasn't wanting weight loss as I found it hard to keep weight on). It's not something you need to take continuously - I think the research only looked at a 6 week period - more on an as needed basis. Of course, look into it for yourself for any contraindications. All I know is it helped me - I had less anxiety and felt happier...I would catch myself laughing at things more often. With the huge limitation put on carb/grain intake when dealing with Candida, I think it helps supplement our bodies to make serotonin that our diets lack. I did try Tryptophan and the serotonin precursors, but for me, it didn't work so well and I didn't like how I felt when I took them. Just my experience...
I tried and am very thankful for having had access to Alprazolam, especially in the periods where I would have the worse panic attacks and thoughts of self-destruction as it seemed to shut off my thought patterns. I stated they are not the answer long term and I have a friend who has continued to take it in ever increasing doses and his anxiety continues to get worse and worse. I do not and would never judge anyone for taking them as they do have their place and saved me a few times, but for the long term, I think that addressing the things that I mentioned above will offer a much better solution. I honestly can't tell you the last time I took Alprazolam. I still get random anxiety and some panic, but I have been able to stop it or shut it down by tweaking diet or taking more probiotics et cetera.
Anyhow, TC, I wish you the best in tackling your anxiety, as those of us who do or have dealt with it, know how truly awful it is. Time for me to take a brain break and I would suspect, anyone who read this far, needs one as well. :)
Thanks for the great info!