I haven't been here in a while and really need to check in more often. Just reading a few posts of what others struggle with has helped me. Not because I want others to struggle, but it's a reminder that it's not just me.
Anyway, I am 47 years old, I started college in my mid 20s and I am a database programmer by profession. I have always had a bit of a hard time studying even as a child. Not sure how to explain it, but it just sometimes takes a bit longer for stuff to really sink in.
I have also had self confidence issues since I was a child. It did improve over the years but I don't think I ever completely stopped doubting my abilities.
At one point in my career it became harder and harder to learn more complex programming strategies and to wrap my mind around things. I started feeling that I was just not intelligent enough to learn more. Many years went by and I struggled through various jobs but my physical health kept declining. Eventually I stopped working.
In 2011 I was diagnosed with Lyme and Babesia, in 2012 I started seeing LLMDs in Seattle, and since then have also been diagnosed with Bartonella and Ehrlichia. I have other usual infections like EBV, CMV, candida, and more and my nagalese was elevated. I have seen some improvements since I have been in treatment, was feeling better around February/March but then in April started going downhill again. Saw my docs in May and the new treatment protocol is kicking my butt. In addition, I just had cavitation surgery on two locations 15 days ago and I have been struggling every since. My body feels more toxic than ever, and my gut issues, which were severe before, now seem even worse probably in part due to all the pain meds I took after surgery.
Getting to the point soon....I promise. Here lately it seems when I start to detox I am dealing with negativity and anxiety. The anxiety is relatively new and especially the severity of it. All of a sudden I questioned whether I got physically ill, which affected my brain and therefore had a hard time furthering my career OR whether my fear of failure/success and my self confidence issues led to my physical illness and now the illness serves as a way to avoid those fears. It is like my mind is playing tricks on my and I don't know anymore what is real.
To be honest, I don't think I was ever healthy. I was born with jaundice, had 2 blood transfusions my first 24 hours alive, was not breast fed, and didn't have contact with my mother until I was 5 days old. I had tonsillitis repeatedly as a child and as a teen and finally had my tonsels out when I was 18. I had menstrual problems from the start, endometriosis later in life and more. I have also had gut issues for a very long time. I started noticing reactions to food back in 2000 I believe and if you have gut issues it's logical you would have brain issues. Yet this anxiety, doubting myself, wondering if I will ever be a fully functioning member of society with a full time job again does not stop. It's hard to separate fact from faction about what is actually going on my life.
Sorry this got so long. I think I just needed to get this out, explain where the fear is coming from, and share it with people who can most likely relate. I would love your feedback, whether you are going through something similar or not.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You wonder: " . . . whether my fear of failure/success and my self confidence issues led to my physical illness and now the illness serves as a way to avoid those fears." (end quote)
You have recently (2011) been diagnosed with 4 tick-borne infections and 3 chronic stealth infections.
Let me assure you, you did not bring this upon yourself. No lack of self-esteem, no lack of courage, no wish for failure can infect you with these infections.
----------------
You go on to explain that you
"just had cavitation surgery on two locations 15 days ago and I have been struggling every since. My body feels more toxic than ever, and my gut issues, which were severe before,
now seem even worse probably in part due to all the pain meds I took after surgery." (end quote)
ALL that is a great deal for any body to go through, especially a body with lyme, et.al.
Indeed, the physical ordeal of surgery
Q for you: Were the numbing agents used EPI Free? Epinephrine is in many number agents and can cause serious anxiety for those with lyme.
Anyone who knows about lyme should have made absolutely certain that you would not be given any agent with EPI in it.
Now, to the pain meds. Yes, they can cause the mood and mind to tumble, and even cause more body wide pain, too.
Liver support should help until you don't need those anyone longer. I prefer the more natural choices when possible as they are easier on the liver. But if you need Rx short-term, by all means, let it work for you - just be sure liver support is taken, timed away from the Rx.
Topic: Looking for long term pain management -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You wonder: "where is the fear coming from?" (end quote)
The neurotoxity of lyme CAUSES the fear. The adrenal / hormone dysfunction CAUSES fear. The inner ear dysfunction that often goes with lyme & co. CAUSES fear.
The way the brain function is affected, the heart, too.
There are many solid physical reasons for this. Anxiety and TBD (tick-borne disease) go hand in hand.
LIVER SUPPORT; ADRENAL SUPPORT are to places to begin, after MAGNESIUM & FISH OIL
TALK THERAPY, too, with ONLY an ILADS educated LL therapist can be a tremendous help. Indeed, lyme "complex" can bring Superman to his knees. Lyme "complex" / TBD is our Kryptonite. It can derail the best of the best.
And the fact that society and the medical field in general discounts lyme and dismisses those dealing with it, well, that can do a number on ayone's sense of reality.
You are not creating this situation. Honest. I know. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This explains so much.
Plan something refreshing for yourself after pouring through this. Take it in steps, it is a rough format so you may want to copy, paste and then change font and add some space breaks for your "study" copy.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
Any of these -to-lyme symptoms can also turn the world upside down. Explanations and solutions included. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What helps & where to begin (while assertively addressing infections according to what your body can tolerate):
LL Naturopathic links here, too, with articles, books, links for various methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking back over your physical history, NO, you did not bring illness upon yourself, even in earlier times.
My history (and that of many later diagnosed with lyme) is a near mirror to yours. I know I wanted a "real" life and tried so very hard. That was not in the cards for me due to illness, not due to lack of character.
Of that much, I am absolutely certain beyond a doubt.
Still, it does not make this easier. It's still rough. But you, myself, others at least now have so much more information. Knowledge is power.
Now, for some patience, ultimate understanding and self-compassion. This takes time. Far longer than is "fair" but hold on to truth and light and find some beauty along the way.
If at all possible, I suggest finding an ILADS educated LL / TBD-literate therapist to talk to but also to help figure out ways to "frame" all this and how to muster courage to face today's reality -- while maintaining hope for the future.
Because a furture certainly can be brighter & stronger. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Wow, thank you for those responses. I cannot tell you how much this has helped already.
I honestly don't know about the numbing agents but I will keep this in mind if I need more dental work done. However, I started dealing with this anxiety before the surgery. It comes and goes.
I am also not on pain meds anymore so that's good. My liver values were off every so often before surgery so taking Percocet, which has Tylenol, I am sure did not help.
I had not even considered am ILADS educated LL therapist. Great suggestion - thank you. How do I go about finding one?
I do get magnesium topically every night and I give myself a mag sulfate injection twice a week. I take hydrocortisone for my adrenals and had to increase after surgery and I take things for my liver.
Thank you again!!
Posts: 165 | From TN | Registered: Jul 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say take hydrocortisone for your adrenals - is that LOW DOSE? ONLY low dose is safe with lyme. See:
5. Some LL NDs (naturopathic doctors) and acupuncturists are also excellent regarding support measueres for specific anxiety issues. They are also good listeners.
Not sure about insurance coverage for therapy. If that's in the picture, get the names of those on your plan and run all names by your area lyme support groups. There may not be one fully LL, but you might gather some key detail to help with a decision.
Hope you feel better soon. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Yes, low dose replacement of HC only.
Posts: 165 | From TN | Registered: Jul 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good.
Even at low dose, Cortef can add to anxiety for some individuals. Just be aware of that, just in case. Dose or timing adjustments sometimes can help.
Adrenal "Glandulars" can cause some excitatory issues for a few folks, too. I could only tolerate herbal adrenal support methods.
Whatever adrenal support you take, it should help you feel better, in a balanced sort of way. Avoid anything that pushes energy at all or revs you. Support is the key. Gentle. Just no revving of engines.
It should allow your body to better manage, not pull or push your body along. That's how to know when you are on the right stuff. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure your treatment is good for both Babesia & for Bartonella. Both can cause anxiety issues far more intense that "just" lyme (many have reported).
Self-doubt, regret, "this just can't be so" sort of stuff also seems intensified with either/both Babs and Bart.
Some of the treatments can be hard to tolerate, too. Some easier than others, of course. I did so much better when adding Cyptolepis than with some others (though Babesia tx must be a combination).
Be sure to stay the course long enough, too. Both can be stubborn (so the patient has to be even more so).
I also suggest not naming how you feel around others who are not LL professionals. The kind of anxiety will not at all be understood by most. And, really, it's all part of just not feeling well (which will serve as enough of an explanation for anyone).
Again, hope you have some breathing room soon. Stay cool. --------------
CRYPTOLEPIS sanguinolenta -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
2doggies- your description about your birth and such and your description about how you felt in your choosen career and while learning new things is very similar to me.
It wasn't for lack of trying.
The lyme spirochetes are literally eroding our brains and bodies away.
It is not you, and there isn't anything you could have done differently to prevent your brain and body from going this way. It was out of your control until the day you choose to get treatment. Now the control is back in your hands. You will get your brain power back. I will get my memory back. Keebler will get balance back.
It will take a while, it will be a bumpy road, but we're on the right road.
The pooled knowledge and experience on this forum is what will help everyone get thru.
So just know that you're not alone in this battle, that everyone on this forum is cheering for you. If it helps, when you're feeling anxious, think about how all of us are in this together, and eventually we'll win this thing.
And if you need a chuckle...
One day when I was getting ready to leave for work, I bent down to tie my shoelaces and realized I forgot to put on pants.
Thank goodness I didn't pick sandals that morning, eh?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Thank you. If the anxiety hits again I will definitely come back to this thread for a reminder that this is all part of the journey.
That is funny about your pants. I took my phone the other day, started dialing a number, then realized I was using the calculator not the dialer! I have definitely done some weird things since getting sick and have gotten very forgetful. A couple of weeks ago I wasn't sure if Jerusalem is a city or a country and if it's a city, whether it's in Israel or not. It's like the information is in my brain, but I can't really access it and even when I do, I am uncertain of its accuracy.
Anyway, thank you for your support. I appreciate it.
posted
Well, it appears I have several things going on causing or contributing to my anxiety, other than "just" Lyme.
I ran out of testosterone cream end of June and for various reasons my doctor has not refilled that RX and probably won't until I see him in September. So I have been on a much lower dose (0.5 to 1 mg versus 5 mg a day) since then and I am feeling it. I have no motivation, I feel negative, coming up with a positive thought is an effort, I have no motivation, and more. Finally yesterday afternoon I slathered on 4 mg worth of the testosterone cream I have and felt slightly better within an hour. I had more physical energy too and even had trouble going to sleep when I am normally tired. I am supposed to apply it in the AM but was so desperate yesterday afternoon that I didn't care.
This morning I applied another 3 mg worth and it has also helped. I actually feel more positive and I WANT to go for a walk versus forcing myself to do anything.
Next, after the cavitation surgery I increased hydrocortisone from 30 mg/day to 47.5 mg a day and then slowly came down to 42.5 mg/day. I have been stuck there. Feeling so low on energy and being depressed made it seem like I still needed it. Well, I took a 15 mg dose this morning like I have for the past few weeks and now, 4 hours later, I still don't feel like I need the next dose. By now I am normally yearning for the next dose so I can feel better but today I don't feel like I need it.
My conclusion is that I was mis-reading the symptoms in part as low cortisol but it was low testosterone. Having more testosterone I now have more energy and don't need as much HC. The excess HC might be causing anxiety.
I have no idea if this is correct or if I am just desperate for answers, but I am hoping with an increased dose of testosterone and a reduced dose of HC, things will finally come back into balance.
If you have read this far, thank you. LOL I know I am just babbling here, but it's good to share with people who get it.
Posts: 165 | From TN | Registered: Jul 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic