posted
Hi- I haven't posted in a long time, but always fall back on lymenet when I need help. (you folks were lifesavers back in '03 when I was finally diagnosed with lyme and babesia) Now I am hoping someone here can help figure out what's going on with our daughter (she is 25)
She's been bit by ticks a few times over the years, most recently about four years ago. (actually, most recently was a couple months ago, but she found it and removed it right away). When she was 10 I noticed a round rash on her face that I thought was ringworm at the time, but it didn't itch and faded after a couple days.
About three years ago she had an allergic reaction to amoxil for a sinus infection and was put on a course of oral steroids. A few months later she started having all kinds of neuro problems.
Mood swings, crying spells, irritability, anxiety, panic attacks, confusion, memory problems, itchy hives that come and go and depression. Felt like she was going off the deep end. Also called me once and said she was having trouble seeing (blurry vision)which only lasted for a few hours. Frequent headaches, left eyelid that droops off and on, I even saw her left pupil dilated twice as large as her right one once, also shaky hands, cold hands, heart palpitations, Light hurts her eyes and severe insomnia. She said her nerves feel "raw" she jumps at every little noise and has now started having hallucinations (auditory), agitation, and some delusional thinking and paranoia that comes and goes. She seems to be better in the mornings but the psychiatric problems get worse if she doesn't sleep or eat right or is under a lot of stress.
Has anyone experienced mainly neuro/psychiatric problems from lyme??
She has seen several doctors all with different diagnosis: unknown psychosis, psychotic depression, bi-polar, and ptsd to name a few. They have tried all kinds of meds and none are working, the doctors seem baffled. Some days she is fine, other days not. We are all very frustrated, I feel like the doctors are missing the fact that she has all these physical symptoms and they only want to diagnose her with a mental illness (due to her age). Also, her joints pop and crack and she has had numbness in her hands and feet on occasion over the years. She did have a western blot done from quest and only the 41 band came back positive. I know when I got sick, the neuro problems were the most predominant for me and I only had 2 bands positive (41,23) but I never had the psychiatric issues, and we don't have any history of mental illness in the family.
Just not sure if we should try to have further lyme tests done or if this sounds like it could even be lyme. Unfortunately, the sicker she gets, the harder it is to get her to go to another doctor. Anyone have any thoughts or similar experiences, I would sure like to know what you all think. I've posted under looking for a doctor here in GA as we would like to find a good neurologist to have some more tests run. Thanks everyone, be well.
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
One person in my Lyme support group is bi-polar and got it from Lyme. Neuro is her main symptoms.
A friend who has been bi-polar for years, finally saw an LLMD when her psych meds stopped working and no one could help.
The LLMD found she had Lyme and they traced it back to a tick bite from 30 years before!
All that time on psych meds and it was from Lyme.
There was also a study done at an mental asylum (I think it was in Poland). 40% of the patients tested positive for Lyme.
Quest DOES NOT test all the bands. It excludes ones that are specific to Lyme because there was once a Lyme vaccine and people who got it, get a positive result on those bands.
Test through Igenex. They test the missing bands.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Also, steroids suppress the immune system, so it sounds like her infections came marching out of hiding when she was given the steroids.
I don't know where it is, but hopefully someone can chime in with the thread about what steroids do to Lyme.
Posts: 2839 | From California | Registered: Jul 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
The symptoms you described for her sound bang-on for my bartonella symptoms. Bang-on, the entire list, literally.
Could be she has lyme and Bart, which would magnify the effect of both on the brain.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Wow, I never thought about Bartonella. She hasn't been tested for co-infections. I need to check the symptom list for Bart. I wondered about the steroids too. She's also been under alot of stress this past year, working two jobs and taking classes to try to get into grad school. All that might have stirred something up if it was dormant. Thank you so much for the info!
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Forget the neurologist. Get her to a LLMD.
Forget all the psych diagnoses. Many of the drugs that you say are not working could be very toxic to her system if she has lyme.
Yet, an ILADS educated LL therapist (for talking, working through) would be excellent along with a LLMD. A LL ND might be excellent for nutrient counseling as some vitamin deficiencies can cause such symptoms, too. But, with the history of the rash, tick bites and band #41, I would say she likely has lyme.
Her symptoms mirror mine, for the large part with very few exceptions.
Indeed, steroids (and lyme) can cause all the symptoms you describe and if other tick borne infections are on board (as is likely), that would explain a lot
When very ill for years, for energy, (before I knew I had lyme + other TBD) . . . I was given steroids and then one psych (mis)diagnosis after another. Some sprouted from reactions to medicines that were supposed to help but created disaster. The symptoms have been severely misinterpreted as "psych" when they are toxicity & neurological at the heart of it.
"Required" reading for anyone who really wants to understand. 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.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I mentioned that toxicity can cause so many neuro-psych symptoms. And the liver really needs support to help manage:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "jumps at every little noise" (NOT a psych symptom, by the way as many might think.)
Hallucinations (auditory) also are not necessarily psych symptoms but honest vestibular, neurological and liver related. Really. Too much pressure in the brain and inner ear . . . and hyper brain activity with high NMDA receptors.
Be sure to avoid added glutamate (see the excito-toxin thread).
Jumping at noises is a degree of seizure activity and likely also some hyperacusis. At first, I would jump from sounds, not even noise. Then that "jump" became seizures. Actually, not that uncommon with lyme.
MAGNESIUM is the best helper while you sort this out (and so many Rx can make this worse so be careful of that) but that auditory seizure activity, and all the other symptoms indicate lyme, big time. I had all that. You will likely see many of her symptoms here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I had hyperacusis big time, (I still get it sometimes during a bad flare). The magnesium does help. Just today she was wincing when I spoke to her in a normal tone of voice, she said I was being too loud, she has both sound and light sensitivity sometimes.
The tests they ran on her adrenals did come back high on the cortisol, doctor also said her dhea levels were off the charts they were so high. I don't know what that means exactly as no one offered an explanation, but it doesn't sound normal. Thanks again for all your help, going to try to find her a good llmd and hope she is well enough to travel.
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Best to avoid ALL fluorescent lights. Avoid the energy saving ones, especially and all "naked" bulbs.
Lamps with shades, even in the kitchen help me. You can still find regular incandescent bulbs but they are just not a easy to find as they once were.
the light sensitivity is also a hallmark of lyme and also lyme with inner ear issues.
Mostly, anytime when she feels like any symptoms is too strong: assertive rest. Quiet dark room . . . or soothing music. But she may do best with no sounds at all so her adrenals can rest up.
For that cortisol test, if that was a challenge test it could have made things worse. But, she's already been given steroids, so that really can alter a lot. Sure did for me, and for many others.
While finding a good LLMD and sorting out some of this . . .
REST is the most important factor. Nutrition. And just knowing that there are very likely very logical explanation and even if the path may be a bit bumpy, she can get better. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If it is too long to get to a LLMD . . . or too far for her to travel right now, you might consider:
LL Naturopathic links here, too (although not sure if your state has NDs, still, good articles and books here.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- This protocol changed my life for the better. I could only afford to stay on it a couple months, a couple different times (due to budget restrictions) but, when I was on it, I was so much better. I lost ground when I stopped too soon.
I had no access to any kind of LL doctor and I don't think I would have made it without this. Also an excellent consideration while you sort out finding a LLMD.
the only thing is that the allicin will cause one to smell of garlic. Chlorophyll helps, but, still, a little garlic smell was so much better than the terrible symptoms. This started taming symptoms right away, starting out slowly, ramping up.
posted
She has been in a quiet dark room all day today. Very worried as the depression is scary sometimes. I check on her often, she had broke out in a sweat and was soaked, I know I did that when I had Babesia, don't know if bartonella also causes it (night sweats). She will go a couple days like this and then be her old self for awhile and then out of the blue- agitated, and kind of out of it for a few days. Really hope someone can get to the bottom of this. Thanks again.
-------------------- crmc Posts: 165 | From GA | Registered: Jul 2003
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Keebler
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posted
- You might be able to get BABESIA assessed locally and treated before you could get her into see a LLMD. There are different strains and tests are not always accurate but IMO it's vital to move on that ASAP.
It's very important as babesia can get very bad. I recall all those soaked nights.
As for days in a row in dark and quiet, and in bed, if her body needs, that, her body needs that. Nutrients will help with mood but, really, for me trying to push when I just could not was worse for mood than allowing myself the required rest.
Best of luck to you all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote: The tests they ran on her adrenals did come back high on the cortisol, doctor also said her dhea levels were off the charts they were so high.
Does anyone know if high cortisol is responsible for any of these symptoms?
Posts: 832 | From Somewhere | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Yes, it can be. High cortisol causes all kinds of symptoms -- and it's caused (in most part) by the toxicity of lyme / TBD, liver stress, and the damage the high cortisol does to the sensory systems that go on high alert.
Excess cortisol also very caustic to the lining of blood vessels - and that inflammation can cause all kinds of pain and trouble. It can be irritating to the brain, heart, to nerve fibers, etc.
Addressing infection(s) is vital. So is adrenal support, at each step. The adrenal links above explain more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
She needs to see a Lyme literate psychiatrist and a LLMD who can start her on abx. therapy... Good Luck!
Posts: 17 | From Long island | Registered: Oct 2013
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posted
I have to agree with Greta. The neurologic issues are definitely bart. Babesia can cause anxiety, depression, memory issues, and sweats, and it sounds like all those are present.
I've never heard of babs causing paranoia and hallucinations; I've seen bart do it first-hand.
Find a good LLMD - go over to seeking a doctor. Take her in for a babesia test, those aren't as controversial as lyme. Many strains of babs won't come back positive, but you could get lucky with the results and get immediate treatment. A good LLMD is going to take a while to get to see because they're all so backed up.
Posts: 146 | From Maine | Registered: Aug 2011
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