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Posted 9/11/2017 8:30 PM (GMT 0)
So I am treating myself for Lyme and have been on 200mg Doxy daily for about three weeks now. I don’t really see any improvement yet, perhaps worse, since I am now more fatigued and have developed a stiff neck with swollen glands on the sides and back of my neck. Some days I get a break for a day or two and think that maybe this disease is taking a turn for the better and then WHAM - it hits me when I least expect it. I get that wave of head numbness and have to sit for a while; sometimes it’s with me all day. I don’t know why it is, but in the evenings my symptoms seem to get worse, which often results in a restless night. Does anyone else see this pattern as well? I am beginning to dread the evenings. There have been several nights when I go to bed and can't sleep because my head is buzzing and I begin wondering what is wrong with me and become very anxious; it is really a scary feeling!

I have my first appointment with an LLMD in Pittsburgh in early October, and I am counting the days. I just happen to have enough doxy - from my 30 day supply prescribed by my family doctor and what I have been given from family. I can’t just sit here and wait for weeks to see an MD while my symptoms progress. I have been dealing with this since June 1st. I am trying the detox methods that I have gotten from this site: detox salt bath every other day, lemon water, and apple cider vinegar drink on a daily basis. Not sure how much I should detox and can’t really tell if it’s helping. How do you tell if detox is working? I have been taking a bath every other day with water temp around 98 degrees. Yesterday I just received the NutraMedixBurbur-Pinella drops for detox and brain-nerve cleanse. I am a little worried about taking them. Should I take the drops as prescribed (20 drops in 4 oz. of water) when I am having a bad wave of dizziness or should I wait for the worst symptoms to pass and take them after I start feeling better in order to take care of the die off?

My results are back from my brain MRI and basically my PCP says it is inconclusive; it’s not normal but I don’t have brain cancer, hemorrhage, stroke, etc. It does show “supratentorial foci of white matter T2/ or hyperintensity”. She says I should find a neurologist who can order different tests. She did mention MS because of the other symptoms I have been feeling. I asked her why not Lyme since I was bit by a tick exactly when all of this started. To my surprise she did acknowledge that as a possibility.

Anyone have any other suggestions? I am eating very healthy – no sugar, grains, and lots of fresh vegetables and moderate protein. Now that I’ve had a lot of time to think, I believe I have had Lyme for years and believe that I may have been re-infected in June. Over the years I have had many stiff necks, swollen neck glands, joint pain in shoulders, hips and knees and brain fog. I thought it was just me, but for the longest time I’ve mixed up my words and just laughed it off.

I hope I haven’t come across as a whiner. I know there are so many of you out there who feel much worse than I do and also have to deal with work and supporting a family. My heart goes out to all of you!
Posted 9/11/2017 8:32 PM (GMT 0)
I've been trying to solve this mystery as well. I know the immune system is more active at night and that it does most of its work while we sleep. That's why sleep is important but then Lyme causes sleep disturbances.

Catch 22.
Posted 9/11/2017 8:36 PM (GMT 0)
NumbHead - first I want to say that you're not coming across as a whiner. We're here to help, answer questions.


For at least an entire year (before I was diagnosed) - my symptoms were fairly minor until the late afternoon - every single day they would ramp up - vibrations in my upper body and nerve pain.

Now since treatment - they can occur anytime of the day.

I would take the Pinella and Burbur everyday - maybe just take them late afternoon...and when they hit, you can take it again.
Don't wait until AFTER the symptoms have subsided.

Something else you could take is a binder to flush out the toxins that are accumulated in the digestive system.
Otherwise they are reabsorbed into the blood stream.

Question: Are you taking probiotics daily...and something to support your liver?
Posted 9/11/2017 9:03 PM (GMT 0)
Numbhead,

You're definitely not a whiner!!

Lyme and co-infections can cause a host of wild, weird, and alarming symptoms that can leave us anxious and bewildered. The fact that our symptoms can come and go and change and be different from someone with the same infections makes it all the more confusing.

After I learned about Lyme and some of the coinfections, I too, started thinking and putting things together and realized I've had signs of Bartonella since early childhood. I'd had headaches and leg aches most of my life, along with other things I'd thought were just a normal part of being me. I'm glad I know the truth now.
Posted 9/11/2017 9:14 PM (GMT 0)
Hi Girlie,

I take NOW probiotic-10 50 Billion, 1 cap in the morning.

I'm not sure what to take for liver support?

I was thinking of buying Activated Charcoal. Is that a binder you would recommend?

Thanks for the suggestion.
Posted 9/11/2017 10:13 PM (GMT 0)

NumbHead said...
I'm not sure what to take for liver support?

Standardized Milk Thistle is one of the most recommended herbs for liver support.
Posted 9/11/2017 11:43 PM (GMT 0)

NumbHead said...
Hi Girlie,

I take NOW probiotic-10 50 Billion, 1 cap in the morning.

I'm not sure what to take for liver support?

I was thinking of buying Activated Charcoal. Is that a binder you would recommend?

Thanks for the suggestion.

Question: How long after your morning abx are you taking the Probiotics?

I take the Activated Charcoal. It needs to be spaced out - from your food, abx, supplements by a couple of hours.

So if you take abx at 5:00 p.m. and eat dinner - finishing at 5:30. Then you can take the Activated Charcoal at 7:30 p.m.
Posted 9/12/2017 12:08 AM (GMT 0)
Hi Numbhead,
Oh I sure know how you feel and understand how it feels to dread nighttime and trying to go to sleep.

Last August,September and October my head and neck felt like a intense waves of numbness always more intense in the late afternoon and evening( plus many additional symptoms).

Thought I was going to die, and had to try and sleep on the couch every night with my head propped up on pillows.

It is gone with continued treatment so please hang in there. Have you considered doing Stephen Buhner's Neuroborreliosis protocol? Its in his 2nd edition book, "Healing Lyme"

It helped me along with taking antibiotics.

I am 90 % better now but the important thing was that when I was suffering like you are what I needed most was to knock down the worst symptoms first, so I could function and have some relief.

If you research and decide to do herbals:

Always start slow with herbal tinctures, one to two drops at first to see how you react. Then build up slowly. Not everyone need's full doses to heal or see results. Start only one herb at a time. So if you have any reaction or sensitivity you are able to tell what herb it was from.

Always check for side effects and contradictions before taking any herbal.

Take care and I am so sorry you have to go through this, but remember there is hope to get better. Sincerely, Jo
Posted 9/12/2017 12:42 AM (GMT 0)
It's a lack of sun. UV light drives so many processes in our bodies, including mitochondria and immune system. I personally do very poorly after i fall asleep (i was told this is a symptem of dysautonomia) but have seen an improved overall stability once i fixed my circadian rythems. Even though too much sun can be hard on us, it's still better to be in the shade during the day than be at night. Most likely, the earlier you get to bed and earlier you wake up, the better
Posted 9/12/2017 12:46 AM (GMT 0)

goshawk said...


It is gone with continued treatment so please hang in there. Have you considered doing Stephen Buhner's Neuroborreliosis protocol? Its in his 2nd edition book, "Healing Lyme"

Is adding gou teng to his current protocol the neurolyme protocol?
Posted 9/12/2017 3:00 AM (GMT 0)
yes at night the immune system is more active, so all your symptoms flare. i always wake up feeling more sore than when i go to bed. feeling even toxic sometimes. then it goes away in 1-2hrs after waking up.

also since you cannot drink water while sleeping (And you should not because that will make you wake up many times and screw up your sleep cycle), you will feel more toxic because your fluids will have more toxins and less water
Posted 9/12/2017 3:16 PM (GMT 0)
Girlie - I take my probiotic first thing in the morning and then I have breakfast a couple hours later. I am not taking anything to support the liver, but WalkingbyFaith suggested Milk Thistle. Thanks for your advice, I really appreciate it!

Girlie said...
NumbHead - first I want to say that you're not coming across as a whiner. We're here to help, answer questions.


For at least an entire year (before I was diagnosed) - my symptoms were fairly minor until the late afternoon - every single day they would ramp up - vibrations in my upper body and nerve pain.

Now since treatment - they can occur anytime of the day.

I would take the Pinella and Burbur everyday - maybe just take them late afternoon...and when they hit, you can take it again.
Don't wait until AFTER the symptoms have subsided.

Something else you could take is a binder to flush out the toxins that are accumulated in the digestive system.
Otherwise they are reabsorbed into the blood stream.

Question: Are you taking probiotics daily...and something to support your liver?

Posted 9/12/2017 3:19 PM (GMT 0)

WalkingbyFaith said...

NumbHead said...
I'm not sure what to take for liver support?

Standardized Milk Thistle is one of the most recommended herbs for liver support.

Thanks for the suggestion! I think I will give this a try.
Posted 9/12/2017 4:16 PM (GMT 0)
Hi Goshawk,

Thanks you for your kind response. It's comforting to know that you understand how I feel and that I'm not alone with these scary symptoms. I am sorry that you had to experience them for three months, but happy that you talk about them in the past tense! I feel hopefull that I too will get better as you have.

Like you, I also have had thoughts of dying when these symptoms happen during the night. It's terrifying and lonely and I have spent a few nights on the couch just trying to get through it. I had another attack last night that woke me up at 11:30. I was feeling shooting charges of pain in my head while trying to keep myself calm. The intensity was only about a 3-4, but enough to keep me awake. Headaches are a newer symptom and this worries me. I took an Ambien and was able to get back to sleep for another 5 hours.

I have heard of Stephen Burner from this site, however last night I read about him extensively. I am going to order his book, 2nd edition as you suggested. As I learn more I will consider the neuroborreliosis protocol. There is so much to learn...at times it seems overwhelming, but it is good information!

Thanks again for all the great information! I wish you the very best with continuing good health.

quote="goshawk"]Hi Numbhead,
Oh I sure know how you feel and understand how it feels to dread nighttime and trying to go to sleep.

Last August,September and October my head and neck felt like a intense waves of numbness always more intense in the late afternoon and evening( plus many additional symptoms).

Thought I was going to die, and had to try and sleep on the couch every night with my head propped up on pillows.

It is gone with continued treatment so please hang in there. Have you considered doing Stephen Buhner's Neuroborreliosis protocol? Its in his 2nd edition book, "Healing Lyme"

It helped me along with taking antibiotics.

I am 90 % better now but the important thing was that when I was suffering like you are what I needed most was to knock down the worst symptoms first, so I could function and have some relief.

If you research and decide to do herbals:

Always start slow with herbal tinctures, one to two drops at first to see how you react. Then build up slowly. Not everyone need's full doses to heal or see results. Start only one herb at a time. So if you have any reaction or sensitivity you are able to tell what herb it was from.

Always check for side effects and contradictions before taking any herbal.

Take care and I am so sorry you have to go through this, but remember there is hope to get better. Sincerely, Jo

Posted 9/12/2017 4:28 PM (GMT 0)
Mpost- I didn't know that the immune system is so active at night. This certainly makes sense. I also feel better in the morning, especially when I get a cup of coffee in me!

mpost said...
yes at night the immune system is more active, so all your symptoms flare. i always wake up feeling more sore than when i go to bed. feeling even toxic sometimes. then it goes away in 1-2hrs after waking up.

also since you cannot drink water while sleeping (And you should not because that will make you wake up many times and screw up your sleep cycle), you will feel more toxic because your fluids will have more toxins and less water

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