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Posted 3/14/2019 9:31 AM (GMT 0)
Been awhile since ive been on. Just to catch up, ive been doing fairly well on nothing. I just stopped everything one day, except my thyroid meds and the occasional xanax. This winter started hitting me hard, and ive used up a lot of FMLA time. My main complaints now are slight to moderate joint pain(this I can deal with), insomnia...which in all actuality feels like a total reversal of my sleeping pattern. So exhausted most mornings, and I try to push through, but when I cant ill sleep, sometimes until noon. Then im up for a few hours and back to sleep in the evening. When my true normal bedtime comes, I cant sleep. Im up all night.

The last few days, it feels like IBS symptoms back again. Whole system slowed down. And though im having bowel movements, it feels like it takes forever for food to move through. Example, but I can eat something for supper and burp the next morning and taste the previous days meal(TMI sorry). Yesterday, the reversal hit, a lot of gas. Which gave me a false sense of security and I almost didnt make it to the restroom. I took off work today, again. The digestive feeling I have right now is one of where I feel like I need to go, but nothing is coming out. My intestines are gurgling. And I just am positive I am going to have a moment where if I was working, the time would come where I wouldnt make it to the restroom.

So, mild joint pains, major sleep disruptions, and IBS type symptoms that I can only compare as C dominant with minor D toward end of "flare".

Over the 5 yrs this has been going on, this pattern has been the only one that has been replicable every single year. Ive been doing so well, functionally, since stopping everything, yet this persists. Coincidence with winter/transitioning to spring? Though my D levels are near 55, I cant think of anything else that would make these symptoms pop up predominantly at this time of year.

Anyone else go through similar? Thank you.
Posted 3/14/2019 11:22 AM (GMT 0)
My worse times usually hit in late April into May. But I can relate. I've had similar IBS and sleep issues, and the minor joint pain I also can live with. My main flaring issues are mostly neuro and blood vessel ruptures, leading me to believe it's mostly Bart related instead of Lyme.

I've been treating since March 2010 and relapse within a few months of stopping ABX. Herbals alone are not enough for maintenance and I always backslide without Rx. We'll see what happens next month.

You are not alone my friend...
Posted 3/14/2019 12:36 PM (GMT 0)
- symptoms in colder months
- joint pain
- fatigue
- IBS

I’m thinking mold.
Posted 3/14/2019 3:10 PM (GMT 0)
I've always considered mold myself. I live in a small lakeside cottage with a dirt crawlspace that has a water level equal to that of the lake. Last fall we demolished the place and are rebuilding from scratch ready for spring move-in. New place should make a difference.
Posted 3/14/2019 3:18 PM (GMT 0)

tickbite666 said...
I've always considered mold myself. I live in a small lakeside cottage with a dirt crawlspace that has a water level equal to that of the lake. Last fall we demolished the place and are rebuilding from scratch ready for spring move-in. New place should make a difference.

Make sure it doesn’t have a dirt crawlspace. That’s what did me in. A colony under my bedroom floor.
Posted 3/14/2019 3:20 PM (GMT 0)
The IBS could be mold or ropeworm or both. Candicid Forte, olive leaf capsules, and Mimosa pudica helped me get a bunch out.
Posted 3/14/2019 4:36 PM (GMT 0)

tickbite666 said...
My worse times usually hit in late April into May. But I can relate. I've had similar IBS and sleep issues, and the minor joint pain I also can live with. My main flaring issues are mostly neuro and blood vessel ruptures, leading me to believe it's mostly Bart related instead of Lyme.

I've been treating since March 2010 and relapse within a few months of stopping ABX. Herbals alone are not enough for maintenance and I always backslide without Rx. We'll see what happens next month.

You are not alone my friend...

Tickbite - do you go to a pulsing protocol before you stop?

If not - maybe try it? One similar to what Dr J does?
Posted 3/14/2019 6:44 PM (GMT 0)
Girlie,

I've done a good deal of pulsing for the past 5 years. Started with 2 weeks ON and 2 weeks OFF, then increased to 3 weeks OFF and each time I hit 4 weeks OFF I back slide. I've been on my current full time protocol since last July. Next appointment is April 8 to consider next change. Most likely I will stay the same since it has been keeping me at about 90% with only occasional neuro flare ups. Can't get appointment to see the Lyme Neurologist until November to see if my low immunoglobin labs make me a good IVIG candidate, or just stay on abx for maintenance.
Here's my long list of abx protocols.

10/18/18 to Present: Alinia, Rifampin, Biaxin, Nystatin, Liposomal Oil of Oregano, LDN full time
7/9/18 to 10/17/18: Alinia, Rifampin, Biaxin, Nystatin, Liposomal Oil of Oregano full time
3/12/18 to 7/8/18t: Tetra, Diflucan, Alinia, Oregano 2 week on/3 week off pulse.
11/18/17 to 3/11/18: Tetra, Diflucan, Alinia 2 week on/3 week off pulse, added Liposomal Oil of Oregano
7/24/17 to 11/17/17: Tetra, Diflucan, Alinia 2 week on/3 week off pulse
7/1/17 to 7/9/17: Tetra 2 week pulse, ran out 7/9/17
6/14/17 to 6/30/17: Tetra, Alinia (ran-out) 2 week on/off pulse
5/27/17 to 6/13/17: Tetra, Diflucan, Alinia 2 week on/off pulse
5/1/17 to 5/26/17: Tetra, Diflucan, Alinia 2 week on/off pulse, continue Famvir full time
4/17/17 to 4/30/17: Ceftin and Bactrim full time after bite, added Tetracyline, continued Famvir
11/24/16 to 4/16/17: Pulse Ceftin and Bactrim 2 weeks on/off. Added Famvir fulltime.
9/24/16 to 11/23/16: Pulse Ceftin and Bactrim 2 weeks on/off.
7/28/16 to 9/23/16: Pulse Ceftin, Bactrim, Diflucan 2 weeks on/off.
7/7/16 to 7/27/16: Pulse Ceftin and Bactrim 2 weeks on/off. No refills left for Alinia
5/9/16 to 7/6/16: Pulse Ceftin and Bactrim 2 weeks on/off, Alinia full time
2/29/16 to 5/7/16: Nystatin, Cipro, and Plaquenil full time; pulse Ceftin 2 weeks on/off
2/15/16 to 2/28/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil full time, no pulse.
12/7/15 to 2/14/16: Crypto, Nystatin, Cipro, Tetracycline, Plaquenil. ABX pulsed 2 weeks on/off
11/26/15 to 12/6/15:Rx Cryptolepis, Nystatin
9/23/15 to 11/25/15:Rx Cryptolepis, Cipro, Tetracycline, Plaquenil, Nystatin (liquid)
7/31/15 to 9/17/15: Rx Cryptolepis, Cipro, Minocycline
7/18/15 to 7/30/15: Rx Cryptolepis, Cipro
5/21/15 to 7/17/15: Rx Cryptolepis
4/16/15 to 5/15/15: Diflucan
3/19/15 to 4/15/15: Nystatin
2/1/15 to 3/18/15: Minocycline, Nystatin
12/17/14 to 2/1/15: Minocycline, Plaquenil, Nystatin
12/09/14 to 12/16/14: Plaquenil, Nystatin,
11/19/14 to 12/8/14: Plaquenil, Nystatin, Levaquin
11/12/14 to 11/18/14: Plaquenil, Nystatin, Minocycline
10/10/14 to 11/11/14: Plaquenil, Nystatin, Diflucan
9/8/14 to 10/9/14: Minocycline, Plaquenil, Nystatin
8/4/14 to 9/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
7/8/14 to 8/3/14: Plaquenil, Nystatin, Valtrex
6/8/14 to 7/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
4/19/14 to 6/7/14: Minocycline, Plaquenil, Nystatin
4/2/14 to 4/18/14: Doxycycline, Plaquenil, Nystatin
3/10/15 to 4/1/14: Coartem (last dose taken 3/26/14 am), Nystatin
2/6/14 to 3/6/14: Doxycycline, Plaquenil, Rifampin, Nystatin
11/23/13 to 2/5/14: Minocycline, Plaquenil, Rifampin, Nystatin
11/9/13 to 11/22/13: Minocycline, Plaquenil, Rifampin
Posted 3/14/2019 6:56 PM (GMT 0)
So you backslide when you are on 2 weeks on with 4 weeks off?

What I'm doing with Dr. J:

Have been on 2 weeks on, 2 weeks off for a long time. (but different meds and only taking the meds for 8 days in that 2 week period)

Now I'm going to 4 days of meds (M/W/Th/F) and 3 weeks off. That is the Maintenance Protocol.
I'm not symptom free yet...we'll see if my immune system kicks in.



I wonder if you need to decrease your 'on' days before increasing your 'off' days.

Have you not taken Rifabutin? The reason I ask - is I took Rifampin for a long time (over a year) but when I went on Rifabutin...holy moly...it hit me hard....but each cycle, it's getting more tolerable...
Posted 3/14/2019 7:44 PM (GMT 0)
decrease ON cyle first is worth a try. Also Rifabutin may be a good change too.

My LLMD as aggressive as she is, is not a fan of Dapsone and related protocols.

thanks for ideas.

later
Posted 3/14/2019 9:55 PM (GMT 0)
If these episodes would be mold related, why would I feel them only during the cold months and not the wetter months like spring and fall? Sorry, but I cant wrap my head around that one.
Posted 3/14/2019 10:23 PM (GMT 0)

trader758 said...
If these episodes would be mold related, why would I feel them only during the cold months and not the wetter months like spring and fall? Sorry, but I cant wrap my head around that one.

Its possible there is small amounts of mold in the place you live. In the cold months you spend much more time indoors and so are exposed for longer periods to the mold.

Obviously I don't know, but thats a possibility.

you might try the HA thing I am doing here For joint pain

https://www.healingwell.com/community/default.aspx?f=30&m=4112412

hyaluronic acid is the main lubrication for the joints and lyme destroys it.
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