posted
I've had sleep studies done that show Alpha wave intrusion and almost no slow-wave (restorative). Has anyone else experienced this?
My other symptoms include:
- a migrating bi-lateral rash (chest, thighs, ankles, etc. but always on both sides of my body).
- joint pain and some swelling in a few joints
- diminished sense of taste, bitter taste
- vision problems
- diarrhea (once of twice weekly)
- EXTREME fatigue, brain fog, etc.
Feels like something systemic, but various docs have been unable to help -- including one that "doesn't believe in chronic lyme".
I recently had a battery of 3 lyme tests done (blood tests), but all were negative. Yet much of what I've read suggests that I should not rule out lyme based on blood tests.
Any ideas?
-------------------- Really need some help and advice!! Posts: 5 | From New Jersey | Registered: Jun 2008
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posted
Welcome Bob from New Jersey! Do you have a doctor that specializes in Lyme disease?
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
I met yesterday for follow-up with MD who specializes in sleep disorders.
I had the same results as you and my sympathetic PCP said it's due to pain while asleep causing alpha wave intrusion. I had only a brief period of REM sleep.
Yet, he thinks with cognitive conditioning I should be able to fall asleep.
Have been on ambien for a few months and he says it's ok to continue. But I would like to be able to quit. Yet, even when relaxed and not in a lot of pain, I can't fall asleep or stay asleep.
My sleep study was done with 10 mg ambien cuz couldn't fall asleep there.
Sure sounds like you have lyme. What lab did your testing? Was it Igenex?
Posts: 1302 | From USA | Registered: Dec 2002
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Same finding for me, my brother and my sister. We are all sick.
It is a common finding in pain conditions like fibromyalgia.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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You've certainly come to the right place!! There are many here that have an amazing amount of knowledge and experience with what you're going through!
First I want to tell you how sorry I am that you're going through this! It is SO frusterating to know that something is wrong, and have your Dr.s do nothing, or doubt you. You are not alone as we have all been through this!!
Can I ask a little more info. from you?
When did you start feeling bad? What does the rash look like?? Do you have it on the soles of your feet and palm of your hands also??
You mentioned that you had 3 Lyme tests, but all where neg. What testing did you have and where??
Since you have joint pain and a rash, I'm sure your Dr. (or at least I pray they at least) did some other blood work. Did they do an ANA, Sed rate, RH facter?? If so, what did they show??
Take care and know that you're not alone!!
Posts: 351 | From Georgia | Registered: Feb 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This is common for people with "Fibromyalgia" &/or Lyme (alpha intrusion).
I use sleep CDs with binaural beats. I used to just leave it on all night, repeating.
You have to set it up so each speaker is on one side of the bed & your head is in between. Check http://www.hemisyncforyou.com/ for more info.
You can also work on this through bio-feedback but the CDs are cheaper & easier. The meditation ones are all good, too. If you work on balancing your brainwaves it helps all around.
Hemisync is very good for this.
Also - it can be a hormonal problem - like not having enough growth hormone. I'm not sure which causes what - first. Sort of like the chicken or the egg...
Lyme can make your hormones go all out of whack causing a problem with sleep. Or, your sleep issues can disturb your hormones...
Lyme does cause problems with sleep, though.
I had 3 Lyme tests & they were all negative. It's a common problem. The tests are not accurate.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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bettyg
Unregistered
posted
welcome bob; so glad you found us!
i have NO DELTA 4 SLEEP and my sleep studies proved that; showing SLEEP APNEA.
i've had this at least 30-35 YEARS! i always told folks i hadn't slept for YEARS, and now i have the prove.
cpap didn't work for me so i quit using it.
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also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
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posted
Well... I can provide a bit more info, but don't have answers to all the questions yet,
First, one of the tests was a "Western blot" I don't know if that means it was igenex or not (I am real new to this)
Don't know what the other lyme tests were, but the doc said no evidence of previous or active infection. All were done with the same blood sample.
Regarding the sleep study -- "notable for abundant alpha and spinale activity; almost no SWS". Delta 0.2%, Stage 1 12.9%, Stage 2 63.8%, REM 15.8%, WASO 7.4% (?).
Regarding other tests -- was checked for rheumatic arthritic (neg), thyroid (neg), lupus (neg).
Regarding the rash -- light red, slightly bumpy, but once hot water hits it...WOW makes me want to rip my skin off.
Had the rash on my chest and shoulders one time (both sides). Next it appeared on both ankles/chins.
A few months later on my sides (both at the same time).
A few months after that on my thighs (both). Always bilateral, blisteringly itchy when hot water hits it, tolerable throughout the day except for occasional bouts of milder itching.
Have not had it on my hands of feet. The first time it was so bad, my chest and shoulders felt and looked "leathery" -- subsequent time not as bad.
Regarding the joint pain, the doc said that it was arthritis -- but there is no history of that in my family, and all of these weird symptoms occurred in such a short span of time, I am convinced it is systemic.
No joint pain in the past 6 months. All of the arthritic symptoms occurred during one 2-3 month period and have not returned though 4 joints remain swollen (right wrist and thumb, left index finger).
The sequence was: 1) potential tick bite (purplish rash, large, but no bullseye pattern). 2) started getting rashes a month or two later. 3) Developed arthritic symptoms (6 months after potential bite); 4) cognitive problems (8-9 months after) including the sleep stuff, brain fog, and odd feelings of "pressure" in my head from time to time. Difficulty concentrating.
I have no pain condition so I do not think its fibromyalgia (can you have fibro and not have pain?)
I also have bruxism -- teeth clenching at night. But could be related to meds (trazadone?).
At night, sometimes my whole body feels oddly tensed. It feels physical -- things like clonapin don't help it that much. Meditative techniques will alleviate the tension for a moment of two, but as soon as I stop meditating, the body tension quickly rolls in like a wave of water that had been held back by a dam. It is very odd.
When I get more info, I will post.
My next steps are: new/better sleep doc, looking for a lyme doc.
Thanks for everyone's input.
-------------------- Really need some help and advice!! Posts: 5 | From New Jersey | Registered: Jun 2008
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cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
somebody probably already said this, but:
a sleep specialist could be a waste of money. Unless you have a sleep disorder like apnea, etc, that you can get treated.
Until you cure the LYme and coinfections, your sleep probably wont get fixed by a sleep expert.
just my opinion, don't know if I'm right. I did over two years of neurofeedback to help me sleep, and it did help, but it also slowed my daytime brain down way too much -- alpha waves out the wazoo; i couldn't wake up.
wish i had not wasted all that time and money on it.
Posts: 1173 | From USA | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, a sleep specialist will be a waste of money if a toxic infection is the underlying cause.
And the alpha wave intrusion is not well understood. They just want to drug people instead of looking at WHY.
However, if they teach about sleep hygiene that's always good to take note to see where you might improve regarding habits and environment.
I know that no light in the eyes after 10 pm is important (but, yes, I'm often up later than that). no night lights other than red as the eyes will change otherwise and trigger alertness.
I had the same thing you describe. And, I'll bet if you got a QEEG you would be heavy in delta and theta during the day. All part of the deal. All can get better.
Many here have improved once the infection(s) get better. I tend toward natural sleep supplements (magnesium, zizyphus, fu shen, melatonin) but other find some help with tiny doses of medicines. My liver just can't handle those and I feel too hung over.
The liver, oddly, is really important to good sleep, too.
Hey, SPARKLE: THANKS for the CD link.
Good luck as you work this out. I hope you can find a LLMD.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
NREM (non rapid eye movement) stage of sleep:
Stages of NREM sleep NREM sleep is divided into four stages:
Stage 1 - occurs in the beginning of sleep, with slow eye movements. Alpha waves disappear and the theta wave appears. People aroused from this stage often believe that they have been fully awake. During the transition into Stage 1 sleep, it is common to experience hypnic jerks.
Stage 2 - is an unconscious state[verification needed], though the sleeper is easily awakened. No eye movements occur, and dreaming is very rare during this stage. EEG recordings tend to show characteristic "sleep spindles" and "K-complexes" during this stage.
Stage 3 - is the transition between stage 2 and stage 4 where delta waves, associated with "deep" sleep, begin to occur.
Stage 4 - is slow-wave sleep (SWS), the "deepest" stage of sleep in which there is a continuation of the delta wave.
Dreaming is more common in this stage than in other stages of NREM sleep though not as common as in REM sleep. The content of SWS dreams tends to be disconnected, less vivid, and less memorable than those that occur during REM sleep. This is also the stage in which parasomnias most commonly occur.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The Dr. Thompson CDs are very good, too! I use them interchanged with the Hemisync ones.
I think the effects of meditation are cumulative. It's not a "religious" thing (necessarily). Sleep issues are complex.
Ambien worked pretty good for me but it was expensive & I didn't want to depend on it.
Sometimes exercise during the day can help. I still stay up all night so I'm probably not the best person to give advice...
Going through insomnia can be rough. I think as you start to get rid of Lyme & heal, your sleep improves (if you do have Lyme).
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I definitely agree with Sparkle, the sleep thing can improve with treatment. I remember having to get up at least 5 times during the night to go to the bathroom and having lots of trouble getting to sleep and even more trouble getting up in the morning. Now I get up once during the night on a good night and maybe twice on a bad night. not perfect yet but still working on it. I take .5g of Klonopin before bed and find it really helps me to get to sleep and since ive been feeling better its been much easier to get up in the morning and im in a really good routine. I also wonder if the sleep improvements come from treating the adrenals, as sleep disturbance is one of the symtpoms of adrenal disfunction and that can definitely result from lyme. Ive been treating the adrenals myself with adaptogenic herbs like Siberian Ginseng and Rhodiola and also Dhea (after tests showed it was low) and an adrenal glandular. I recently went to a naturopath who specialises in the adrenals and he s going to work with me the rest of the way. I think its one part of the puzzle anyway, though im sure there are many reasons why we lymies have trouble sleeping. I do think sleep is important for healing though so even if you have to take a medication to help for awhile i think its worth it just to get some deep sleep. good luck!!
Posts: 45 | From PA | Registered: May 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ticks can carry multiple infectious diseases--- not Just Lyme.
Please search on co-infections under this board or Google Lyme co-infections. Babesia can cause some of the symptoms you note.
All I know is that you live in NJ and there is a lot of Lyme there...have you ever been bit by a tick that you know of? Spend a lot of time outdoors, in the woods?.... these would add to the posibility of Lyme or co-infections.
I am bias toward lyme & co-infections, but it is so common and causes so many problems.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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