I've been in lyme treatment for 3 years: iv, pills, PT, everything. Now my breathing is difficult and I need a cpap and oxygen at night.
I'm so tired of trying and nothing works. Should I try ivig?
Posted by glm1111 (Member # 16556) on :
PLEASE don't give up! I was seriously ill yrs ago and had several near death experiences (ICU etc) I had vey bad lung problems and SEVERE rush me to the hospital life threatening asthma.
I know now that I had lungworms which were eradicated with antiparasitics and salt/c. I was on IVIG for two yrs. Did not solve my problem.
Have you considered salt/c or antiparasitics? Sorry, if I have asked you this before, just don't remember.
Gael
Posted by karenl (Member # 17753) on :
Same question, how long have you been on salt/C? All people who feel like dying are getting better with salt/C.
Posted by Tricky Tickey (Member # 26546) on :
Please don't give up! Hang on!
I agree....Salt-C really hits the spot and needs to be monitored closely to make sure that the good bacteria is not wiped out.
Posted by Dekrator48 (Member # 18239) on :
I'm praying for you to find the strength, the direction, and the hope that you need!!
Big hugs! We love you, please do not ever give up!!!
Remember this info about the Deanna protocol for ALS and other neurodegenerative diseases?
Might be worth a try. The main ingredient in The Deanna Protocol is the energy-boosting supplement, AKG: Arginine Alpha Ketoglutarate.
At the end of the article in the first link, it says: "** To request further information about the Deanna Protocol please contact Dr. Vincent Tedone at [email protected]."
I made the 2nd link shorter using the site "tiny url" because it made the screen too wide...it contains dosage info:
ALS: flukes reaching brain and spinal cord and multiply there
(ivermectin is not working for flukes )
Posted by seibertneurolyme (Member # 6416) on :
If there is any way you can afford it then I would suggest some of the new testing from the F lab -- maybe they can identify some other bacteria or pathogen that has not been treated. The bacteria sequencing test is $800.00 Waiting on hubby's results. The hospital could not culture any bacteria but both Clongen and F lab saw bacteria visually in hubby's blood.
I would also send a question to Buhner on the healing lyme site to see if he has any herbal suggestions.
Do you take phosphatidylcholine? That could help rebuild the myelin sheath.
So sorry you are getting discouraged. After 3 years and such a grim prognosis it is time to start thinking outside of the box.
As you know the problem is how to kill without increasing nervous system damage -- not sure if there is any autoimmune process involved or if it is just a direct cytokine immune inflammatory process in your case. And then you also have to rebuild the nervous system damage.
Hang in there.
Bea Seibert
P.S. Have you had your immune subclasses tested? You would not qualify for IvIG unless they are low.
Have you tried lithium or actos? See my post about using those in ALS here.