Does this sound like Lyme or a coinfection?

Thanks.

------------------
~*moosiefate*~
maybe Lyme since 1998
maybe Lyme reinfected 2004
six negative Western Blots
aim:torimcm
 

Don't rely on this website for diagnosis; people have a lot of experience but Lyme is so difficult, please go to an LLMD.

Having said that, I had a lot of sleeping problems too, still have it once in a while. I took a timed released version of melatonin. It helped me a lot.

Good luck,

Tim

 

In addition to not being able to fall asleep I also had problems like a vibrating/shaky feeling when trying to fall asleep and also legs/arms/neck jerking, heart palpitations, and numbness spreading over my body when I would lay in bed at night.

I too, had no problem sleeping during the day, but the minute the lights went out, forget it!

I still have those problems falling a sleep a few nights out of every month, but no longer is it every night.

Magnesium also helped with the insomnia. Alot of people with Lyme are low on magnesium. It's worth a try! Hope this helps.
 

It can take me hours to fall asleep (sometimes not till 4am) and then I can sleep all morning and afternoon. It isn't an option for me, though, since I have a 22 month old. It makes no sense that I can't simply sleep during the night. It's annoying and frustrating.

I have found that Amitrityline and Flexeril help me fall asleep (Flexeril) and stay asleep (Amitriptyline).

My sister has the same problems sleeping that I do and is also taking the above medications - which work really well for her. She has tried almost everything and is happy to finally find something that helps.

I tried Ambien but it didn't seem to help too much and I felt like crap when I woke up. Same thing with Tylenol PM.

I've read on here that some people take 5-HTP and Valerian for the same symptoms. I've also read that Yogi tea helps alot.

I tried the 5-HTP and Valerian but it didn't seem to help and is more expensive than my co-payment for Amitriptyline.

[This message has been edited by JillF (edited 19 July 2004).]
 

I have Lyme & Babesia & have done only 15 months of treatment; however,I went untreated for 15 years.

I wish I could tell the world that insomnia (where you can't turn your brain off) can be caused by Lyme Disease. For years, I struggled & read every book I could find on this subject with no answers.

I tell my family in the evening, "No, I can't go to bed yet. I haven't put my brain down yet." For real.

So I'm just throwing out some things you might want to research or ask the more savy Lyme patients about.

For what it's worth, one DOC told me sleep is just a biochemical reaction---- which is really true. Your cortisol hormone levels tend to go down at night & increase in the morning. This increase in cortisol is what helps the body wake up. So I've been trying to get the chemistry right ever since!

Being upside down in your sleep cycle is common in Lyme. B12 is supposed to help somewhat with this, but I asked my LLMD for a RX for B-12 shots, but he wasn't interested. There are sublingual B-12 pellets you can take.

Lyme is a nerve disease & we've got to take down the inflammation & rebuild our nerves.

You might think about researching the methylcobalamin form of B12. It affects the brain (neuroprotective) more so than the other forms of cobalamin according to Life Extension's Book - Disease Prevention & Treatment.

Life Extension is found at www:lef.org. It's available in l mg. or 5 mg. doses; & that's the only kind they sell.

The Life Extension site has voluminous articles on health issues. It's a great research source.

I'm sure you can find the right B12 for you locally or do a search on this site & you'll get their best ideas.

I called a compounding pharmacy in New Jersey that make Vitamin B-12 Gelatin Troches (lozenges) in the sublingual form of methlycobalamin. I called them & learned they're pretty much cost-prohibitive.

For the record, here's the info:
Town & Country Pharmacy
(Compounding Pharmacy)
(201) 447-2020
60 East Ridgewood Ave.
Ridgewood, NJ 07450
Need RX for:
Methylcobalamin Troches 25 mg.
Qty. 30
Take l daily under tongue.
Raspberry Flavor; Consistency like a gummy bear.
Cost: $225 for 30-days, plus S&H.

That's just the lowest dose, if your LLMD prescribes a higher dose, then the price goes up!! WOW----

Also, Restoril 30 mg. is great for sleep, but I could never get anybody to give me more than a bottle or two. It is addictive. I would save it for times I had to be up early to go to my never-ending Drs.' appt. or other family events.

Finally, I take Elavil 10 mg & Klonopin l mg. (totally addictive) to sleep. Elavil is a vaso-constrictor, so if you take 20 or 25 mg. you may have a real difficult time waking up.

Here's the problem: Now I have to wake my brain up in the morning. I take Gingko Biloba & Solaray's Flush-Free Niacin 500 mg to get the blood going in my brain.

Sometimes I also use DMAE (precursor to a neurotransmitter, acetylcholine) by Source Naturals if I'm not in die-off pain from Flagyl. This DMAE is for mental clarity & will help keep you awake during day; the effects are subtle & don't hype you up.

I've taken RX Provigil (a narcolepsy drug) which will really keep you awake during the day. I would take l/2 caplet.

However, a "top" neurologist said it was only for MS/narcolepsy & if I didn't have MS he would get in trouble for prescribing it. I didn't say a word, but I know Docs prescribe "off-label" everyday of the year. That's why medicine is an art! Oh well.

Everybody's so different. It really is a trial & error thing. If you do have Lyme, then after months of treatment your brain will start to change. Meds & supplements that use to hurt you, might help after treatment. It's really weird.

Also, when I first change to a different antibiotic, my insomnia goes totally haywire.

Anyway, we all want you to get the correct diagnosis & the best treatment possible without breaking the bank!

Don't spend your precious energy & money on trying to educate non-LLMDs. I tried hard to educate my PCP with Lyme info. She probably threw it in the trash.

It took about 6 trips to the office to draw my blood for Igenex after she told me she'd be glad to do it. They said they lost the kit. Then they said they didn't have the mailing label/FED EX.

Finally, I took my husband with me & I got the lab draw (which Igenex requested had to be redone because the DOC didn't follow Igenex's detailed instructions.) Strange, because I was paying $640 cash for the test.

This PCP said I didn't need to see a LLMD because she wanted me to go back to the Infectious Disease Doctor-----who I had just seen. The Inf. Dis. Doc discounted my severe neck pain as TMJ so why would I go back to her?

Now my LLMD uses Bowen Research Lab for testing ($250) for Lyme, Babesia & Erlichiosis which state your bacterial load.

Anyway, new things are always coming along & you will get better when you find your LLMD.
Rest Easy,
Jan

I forgot to mention that my first Igenex test was negative for Lyme in 2002 by a non-LLMD. I couldn't believe it because I had so many symptoms.

Treatment was delayed for an entire year because I thought I did not have Lyme based on the negative test results.

In 2003 I retested, but this time I found a LLMD. He had me take 2 weeks of Zithromax prior to having the Igenex Western Blot.

Because the Zith pulled the Lyme out of the tissues & into the bloodstream, this time my Igenex was positive for Lyme.

I don't think all LLMDs do the Igenext test this way. If you eventually do a Bowen test, the antibiotic factor doesn't matter. You can be on antibiotics or not with the Bowen.

Remember Lyme is a clinical diagnosis. Don't worry about the tests being negative.
Take Care,
Jan