Topic: Samento, brain fog, bart, cowden protocol, lala land
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I started on Samento on day 18 with the Cowden Protocol. I think that was Sunday night.
The past two or three days some symptoms are increasing.
I flashed back to thinking I was living in my old house at the beach the other day. I saw the floor plan for it in my mind and it took me awhile to recall where I was living.
I sat outside the door of my apartment in the power chair with Rosie leash in my lap.
It took me awhile to know that it was Rosie's leash in my lap and then figure out how to hook it onto Rosie's collar. Both ends didn't look familar to me.
I went to the post office box in my power chair and then just sat there. It took me a while to figure out why I was there and then I had a great deal of trouble figuring out which key to use to open the post office box.
I have had these symptoms in the past but have forgotten about them or learned to manage this thing so I don't have them.
I have learned to manage them. I still get upside down and sideways if I don't stay within my limits and give myself lots of down time which if pretty much foreced down time becuase I can't function after about 10 am and then am down until around 3 or 4 or 5 pm for the most part.
But, this is new.
don't know if it is because I am off all abx now for over two weeks or if it is the 20 drops of samento I am taking per the Cowden protocol.
I also have been doing better with my limited income and have messed it up this month.
Went to the vets to get Rosie's heartguard. knew i could not afford a full years supply so requested 6 months.
I was not able to figure out what the person at the counter was doing. She said it was cheaper to get the 12 month supply because I would get a $5.00 rebate.
She told me the price. I told her I thought it was more. but, if that was the price OK.
so, I got the year supply. Got home and there was a message on my machine. She had sold me the small dog package.
I brought it back and had a great deal of trouble figuring out whether to get the twelve month supply or not.
She told me it would only be so much more which sounded resonable at that time with the credit from the other.
usually also get a discount due to Rosie being a service dog. don't think that was included in the second purchase.
I was in such a brain fog that I could not figure things out.
That is the bottom line here. The brain fog is getting so great I am messing up again and now the checking account may be over drawn and there are many more days left in this month.
I recently was able to get teh checking overdraft on the account so I am relieved about that.
At one time I was 3 cents over and was charged $30 something in fees.
I'll get through. But, I do need to function better.
I was planning on having a telephone consult with my lyme doc out of next month's budget so can't contact him this month.
Did not take any samento last night.
Not sure why I am posting this. WE all go through set backs.
Just don't like being in lala land again.
I also was considering going to the primary doc to ask to see a dermatologist.
But, saw a picture yesterday from the new subscription of what I think is called physicians assistant...sorry can't recall the name...
but dr. Schaller had an article on being overweight and lyme disease.
in the article he had a picture of what bart looked like on a person.
that is what is on my upper back shoulder.
that explains one of the strange markings on my back.
don't know if the cowden protocol covers bart.
tried to do some research on it but came up empty handed.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Was able to get to dog park this am. Talked to lady who is dx with fibro (not open yet to considering lyme disease..even though husband was dx with lyme and treated for it a few years back)
We were talking about foods that affect us.
She mentioned cheese.
I usually do not do cheese but have been having havarti (sp?) cheese slicees with my slices of turkey from the deli.
Now, wondering if I need to stop eating it. It is so good. Been having 2 to 4 slices a day as have not been able to fix meals lately so just do cheese slices and turkey slices rolled up.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
How do you start a NEW post (not a reply)? I have a lyme disease question. Thanks.
Posts: 8 | From Florida | Registered: Jun 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Redwine ...instead of clicking on post reply...
click on post new topic...
...don't forget to click on email me under options so you will know when someone has posted under your thread...
comments, questions, concerns? Clear as Mud??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I started the Cowden Protocol about 2.5 months ago and after going through some rough spots, I can tell you that my head is clear as day. I LOVE THE COWDEN PROTOCOL and how it gave me my life back! I had more of an issue w/ Cumanda than the Samento. Instead of increasing the dose daily...I had to go gradually. I JUST reached the 30 drop target on the Cumanda. Being able to regulate the drops...taking it slowly eliminated all the herx. Please stick with it, you should see remarkable results. Try backing down on the Cumanda.
-------------------- JP Phila Posts: 7 | From Philadelphia, PA | Registered: Jun 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
JP,
Thank you for the encouraging post. I do like the Cowden Protocol. And was finding I was able to do some things that I have not been able to do for quite some time.
Then this hit. Hard to figure things out when the brain is being so weird and when the nature of lyme in general waxes and wanes.
I will consider the cumanda. That might be it. Just took 30 drops of it and am staying in doors and out of harms way and down as I don't want to put myself in harms way because the brain is not working right.
But, it is also that time of the day when I need to veg anyway so tough call.
My thought is to continue on the protocol plan and live with it for awhile.
But, I also need to be able to do basics around here...like eat and think well enough to take the drops and get the dog out to toilet.
Not sure what to do right now. I will try and read the chart later and see how long I have been at this dosage with the cumanda.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Just wanted to add that my service dog has been right next to me on the bed or where ever I go in the house.
When I am doing Ok, she will be on her dog bed or at the foot of my bed.
I don't know how she knows when the brain is being weird. But, she picks up on it and lays shoulder to shoulder with me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
just wanted to say that i believe animals have that instinct to know when we most need them to be right by our side.
my dog sits next to me with his head on my leg when i am feeling really crappy.
i really hope you do well on cowden. are you taking any abx while on it or just doing it alone? is it more effective without abx?
Posts: 871 | From NJ | Registered: Mar 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
That scary stuff left. I am back to looking at Rosie's leash and knowing it is her leash and how to hook it to the collar, etc.
I had a lab service dog before Rosie. He didn't have a clue when my brain was being weird.
My friend's dog doesn't either. Always wants me to play with her when I can't even lift my arm to throw the ball, etc.
I am not taking abx right now. Waiting until I have telephone consult with LLMD's office to see what else they want me to include with the protocol.
I am taking sleep meds, excedrin and 5HTP.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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