nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The LLND said I am "very positive" for Lyme but negative for co-infections. That surprised me because I thought just the opposite.
I have had this for 13 years. Most of my typical Lyme symptoms are gone. I do not have the 28 day flares I used to have. I have no body pain.
I continue to have incredible exhaustion with complete exercise intolerance. Is that Lyme? I thought it was Babesia.
I also have sore soles of feet in the morning when I first get out of bed and headaches every day. Can Lyme cause that?
I have brain fog. In fact, I feel like just giving up. The fight in me is gone.
This is confusing to me.
I ordered Disulfiram. I don't think the antibiotic drugs work and I can't tolerate them anyway. The doctor prescribed Bactrim which was wiping me out. Turns out it causes a huge build up of ammonia in my body because of my CBS mutation.
I have taken Bactrim four times before - I would get better but always relapse. After taking it so many times, doesn't it make sense that whatever residual infection remained would be resistant to Bactrim?
The doctor gave me biaxin - can't tolerate that either. I don't know if I will even pick it up and try it.
When I asked her about Disulfiram, she told me I was "not ready for it". When does a person become ready for what everyone is referring to as "the cure"? After 13 years and a gauntlet of drugs, what else must I do to be ready for it?
Disulfiram is my last hope.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
I would agree with you - sx sound like babesia and bart. Ehrlichia can cause headaches - usually comes with some fever.
My brain fog ended when I started on Armour thyroid. I bloodtested hypothyroid so tried Armour and it worked. I felt like my cognition came back. Have you had your thyroid levels checked?
Other possibilities - Buhner herbs. He's got books out about them and there are online support groups. Many people are taking them and doing better.
PEMF machines. They boost the body's electromagnetic energy and it can start to work better again. If there's anyone who's a wholistic health practitioner where you are, they are the most likely to have a form of the machine.
Some do oxygen dives, with a practitioner set up for it.
Good question you're asking about the disulfiram - hopefully others here can respond.
Posts: 13155 | From San Francisco | Registered: May 2006
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks Robin. I am on Armour - or at least I was until the doctor changed me to cytomel. My Armour dose was only 30 mcg which is the amount you would give a toddler.
I could not persuade the doctor to give me any more even though my neck is swollen from nodules. The new LLND changed me to cytomel, and only 10mcg, which is a tiny amount.
Hopefully I can still pick up the Armour at the pharmacy. I was going to do that today.
One of the first things I tried was the Buhner herbs. I tried all of the other ones too - massive amounts of them. At one time I took 16 of Zangs HH capsules a day and so much allicin you could smell me walk into the room. Tried Byron White and whoever does the Cumanda, Quinua, etc stuff. You name it, I used it.
Hopefully the DSL will work. It is my last hope.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
10 mcg of Cytomel is crazy low. I slowly worked my way up to 60mcg over many months and found this is what my body needed. Made a huge difference in me.
Our bodies cry for T3, the energy hormone is real.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6489 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
That sounds like a low dose of thyroid med. My doc wants me on much higher Armour.
Posts: 13155 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic