Severe insomnia - bart or babs?

Hi everyone and happy mothers day.
I need your help - please tell me if i have babs or bart or both? I have acute, severe insomnia. I get terrible pressure in the head, teeth and sacrum every night, extreme as i lay down to sleep. I cant sleep - AT ALL.
Is insomnia predominantly bart or babs?
I take Doxy and rifampin M, W, F and Artemisinin and Malarone T, Th, Sat.
I tolerated the Art/Mal fine for over a month, maybe two months. then suddenly i couldnt sleep. Bad pain, no sleep.
I started taking the bart meds as i thought that might be the culprit all along.
my feet spasm very badly. my legs and hips ACHE. and I have absolutely terrible head pressure and pain in the teeth.
Yesterday i got the worst headache of my life. I thought i was going to die. The back of my head felt like it was on fire. I had a soft almost mushy patch on the back of my head that hurt so unbelievably bad. After hours of excruciating pain I took morphine and a barbiturate and they barely did anything. I was awake the entire night, with the pressure and pain everywhere.
During the day i feel better. Feet tingle, hands very cold and pain in my sacrum. I cant exercise - at all. A short walk, thats it. and I have been treating Lyme for over a year. I was getting better - then BAM, this insane insomnia and pain hit out of nowhere.
What does this sound like to you? xC

Thanks Mike!

Sorry to hear you're suffering, Swede in LA..
I had tailbone pain...which I believe is a bit lower than the sacrum. It developed after I started treating lyme...and went away after several months of bart treatment.
It bothered me the most when I would stand up after sitting for awhile....I thought it would never go away.

Jackie - If Swede is only taking the Art on T,Th, Sat. - isn't that is a form of pulsing?

Maybe to be on the safe side...it would be an idea to stop the Art for a couple of weeks after three weeks of that.

Hi Jackie - thanks for letting me know about the occipital pain. I had an almost "soft patch" at the back of my head, so unbelievably painful i couldnt even touch it. How long did your pain and insomnia persist - was it while on bart treatment?

Hi Girlie - thank you for your kindness. are you still treating for bart? what were your bart symptoms? i get really bad muscle spasms, almost like contortions. and severe pressure in the head and teeth.

Jackie I will stop artemisinin for a couple of weeks. Is it enough with just malarone to treat babesia? Also have CSA (cordy, sida, alchornea) tincture, which i believe targets babesia - i could switch to that?
Any feedback on your symptoms is so helpful. I dont know what i am/should be fighting.xxC

Hi, i would say given your symptoms you have both Bart and Bab. Our daughter has almost identical symptoms to some of yours. However she did not have insomnia, just very restless sleeps and vivid dreams. Bartonella is known for very bad PAIN. Often Bone Pain as it can live in the bone marrow. Headache you describe was identical to my daughters, soft very sore spot at the back. Worst pain of her life...nothing worked from advil to morphine except RELPAX. One of those tablets and the headache was gone in an hour. I understand you can only take a maximum of 2 pills per month so its only for the absolute worst headaches.
Our daughter is doing much better as we caught the Bartonella (and possibly Lyme, Babesia) after 4-5 months of symptoms.
Her regime is Rifampin 300mg 2x/day and Minocycline 100mg 2x/day. She was feeling much better until we added herbs. It may have been a "herx" but i think herbs can add toxicity to the whole situation so we took her off all herbs except Turmeric .
After 2 weeks we added Alinia which really brought huge improvement (so far).
She still cant exercise . Her resting heart rate continues to be high , but lower than the 100bpm it was 2 months ago. I think its worth monitoring your resting heart rate to gague improvement

Hi, yes the Alinia is the only Bab treatment she is on and it made a difference quite quickly. Its very expensive but may be worth taking for 2-3 weeks..our daughter has been told to take for 3 weeks.
I noticed you did not start treatment until 1 year after your symptoms started. I believe it makes it much more difficult to treat Lyme and coinfections.
A friend of ours was in the same boat-did not diagnose for app 1.5 years. She spent years on antibiotics including 1.5 years on IV abx. She says the only thing that healed her was a Rife machine. She was trained by a doctor in Ann Arbour, MI. Apparently not all rife machines are created equal.
Personally i dont think my daughter needs this right now but i am going to keep it in the back of my mind just in case.
But to reiterate she was doing fairly well on Rifampin and Minocycline but the BIG improvement came with the addition of Alinia. Note: If you go on Alinia you should have Liver enzymes checked every week or two

Wow! I could describe some of your symptoms as my own. The insomnia I treat with Buhner's recommendation for that and I think reading your post has me convinced to add a protocol for bartonella and babesia in that I'm just treating the lyme. Been doing that for four months, and some symptoms remain. I wish I had a better answer for you. You wound up helping me rather than me helping you.

Here is a succinct short list.

http://www.anapsid.org/lyme/symptoms/tbi-symptoms.html

It really can be all the above. All lyme and co have that ability. However....paying extra close to my symptoms at the time I was suffering from severe insomnia, I was also experience a lot predominately Bart symptoms.

I had sore soles. Not just a funny feeling in my feet like with lyme but straight up sore (bad). I also got bart stretch marks around my knees. I would get the zapped with electricity feeling that would shoot up my entire body. And I would get adrenaline surges that would wake me up every 15 mins.

Tying those very bart-like symptoms with the extreme insomnia it all points to bart. When my bart symptoms subsided or completely disappeared so did my insomnia. Coincidence? Probably not.

Hang in there, it does ease up. And work with your doc to get you something to help you sleep.

The natural sleeping pills (L-trphytophan (sp) and melatonin) helped. I was going from 2 hrs max to 4 or 5 (hey it's better than nothing). However it wasn't until my LLMD gave me rx sleeping pills that I slept 7+.

If you go the rx route, use it only to get your cycle back. Then stop and go back to natural to maintain it.

I'm no doctor but I do know a dependency can start to happen on the rx and you don't want to end up taking them for rest of your life just to sleep and keep increasing the dose to work. That's where it can get really dangerous.

I hope my 2 cents helped.

Edit: oh and of course other things like exercise, proper nutrition and for me personally bone broth or bone broth supplement (great lake gelatin is the brand I use). It really help turn things around in the sleep dept. I knew I was sleeping better since using it because I was having dreams again for first time in while because I was actually entire REM sleep.

It feels so eerie to sleep and not dream and then just wake up. It's like you died and came back. We need to have dreams.

Post Edited (dacarte3) : 5/9/2016 7:19:33 PM (GMT-6)

I will chime in on the Alinia. It is recommended by the FDA for 3 days only to treat parasites. One LLMD says to take it for 3 weeks straight, and I'm not sure after that, another recommends to take it 5 days on 7 days off for 3 months

Hi Girlie - I am very tired and have a headache. It is depressing to hear that poor Jackie is still not better after treating for a year.

Jackie - how long did it take to start getting results on the bart treatment?

I tested negative for both bart and babs. Maybe its the lyme persisters. A new study from 2015 found that lyme persisters are eradicated with Rifampin and/or Artemisinin in strong doses, pulsed for a few months.
no other abx kills the persisters, per the new study.

has anyone beat the insomnia, pain and terrible headaches? I am very down.
Thank you everyone xC

Swede I am so much better than I was! And many people are bart remission I have met. There were months I didn't want to wake up the brain and nerve pain was so bad. Then one day I woke up and my symptoms were more bearable. The days weren't so excruciating. Some were some were not too bad at all. Not all but some. I am not all the way back but on the path. Bart plays with your mind so much!! Also the fact you aren't positive means little. I wasn't til much later. After reading your experiences they are very similar to mine with bartonella (and babesia).

You may want to consider neurotransmitter testing also (if someone hasn't already mentioned it 😊).

I tested negative for everything for a year and half. I slowly starting testing positive when my overwhelmed body started mounting a defense. The very last positive was bartonella just over christmas and its actually gone up a couple times ( 1/128. 1/256. 1/512)