posted
Has anyone been told they have also than tested pos. For lymes and got better?
Posts: 47 | From new england | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I agree wtih Droid. Also, lyme is the great imitator. It has 12 extra strands of dna to do whatever it wants, including alter our own dna. Start treating for lyme. Not doing so makes people worse.
If you go to www.lymediseaseassociation.org they will email you some names of LLMDs (lyme literate medical docs). Be sure to pick one who is an ILADS provider. ILADs stands for the International Lyme and Associated Diseases Society. They are cutting edge when it comes to lyme treatment. Mainstream medical docs know nothing about current lyme treatment. They are behind the times and stuck in their old belief system.
Call around and ask to be put on their cancellation lists, that way you will get in sooner. I did this and was able to be seen in 3 days.
Also, some people do herbs or the salt/c protocol in the interim until they see a lyme specialist. I wish I had done this as well as parasite treatment. For herbs, Stephen Buhner (book, Healing Lyme). For the salt/c protocol (book, The Salt/c Plus Protocol for Lyme Infection). For parasite treatment, there is a great thread on this site called THE PARASITE WARRIOR'S THREAD.
Also, there is a great book on lyme called: Cure Unknown (worth reading).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Links here to help you find a LLMD and also detail about the other tick-borne & chronic stealth infections that ANY good ILADS-educated LLMD will consider, along with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I want to help you but I am NOT very well right now getting treated for something else but if you have someone or if you can search on here about mitochondrial treatmentit might give you a clue that treatment might make u feel better but starting lyme tx most importat. U need one of best llmd at thisstage. R u in. Ct. There are good llmd in ny and nyc
I had sx of early als was not dx. But. Mito. Supps helped a lot
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just so you are aware as you look futher into finding a good LYME-literate doctor:
I'm not sure where you have heard lyme pronounced "lymes" but any doctor who adds an "s" to the end is NOT a lyme-literate doctor (for the rare exception where maybe they add an "s" to the end of all words).
Any doctor who has studied this infection will never mispronounce it. So, if you have heard it mispronounced by a doctor, not just a once or twice slip of speech, then that is a huge red flag that the doctor has not studied this at all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I'm on iv and probiotics for three months he also had me on an oral three weeks thought I was going to die he took me off about three weeks ago and still real sick cant walk to good and falling he doesn't tell me much or what to expect ive got an appetite in r.I. Monday with a new llpn. Thank you. For all the help
Posts: 47 | From new england | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
The problem is that if you have actually progressed to the point of getting positive tests for ALS then a lot of damage has already been done to your nervous system.
There used to be a clinic in Colorado I think that specialized in ALS/lyme. Last I heard they actually suggested low dose antibiotics as sometimes the high dose meds can actually make the nerve damage worse.
Also from what I have read most ALS/lyme patients also have the coinfection babesia. If your doc has not tested/treated for babesia then I would suggest doing that.
In your situation you need to be very careful to find a LLMD who has treated other ALS/lyme patients as the treatment needs to be very targeted and monitored very closely.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
The clinic is still there, just not Dr Martz. I do remember hearing that about babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
bea seems to know what i do. maybe she can keep helping you go in the right direction. there are a few others on here involved with mito problems. i was talking to them when i first figured out the tx helped me.
i was told by the time you get an actual als dx it is very late...but i dont think they know everything and i think a lot of us are feeling better byt helping our mitochondria
i usually dont take combo supps-cuz i cant control exact dosages-but when i am too sick i do and i found vitacosts mitochondrial energy booster really helps me and has many of the things in the mito protocols i have found
i hope you get ongoing support here. you are strong and brave.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I also think it's Babesia, parasites, and cytokine storm. Down regulate the immune system and attack infection. Maybe slowly but also add herbs like artemisinin.
Posts: 697 | From CA | Registered: Dec 2011
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