This is topic end of rope in forum General Support at LymeNet Flash.


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Posted by moss (Member # 48339) on :
 
Hi.

I am 28 years old. Back in 2008 I became extremely ill and had to quit my job and live with my parents to take care of me. I am from a small town and visited doctors from every specialty until I realized I might have LD and visited an LLMD. He wasn't very good but got me started on abx.

After maybe 6-8 months I transferred to another LLMD out of state who was reputed to be better but ended up making several mistakes (because of his advanced age), one of which could have killed me.

That scared me enough to quit the whole program and for a while I went rogue on herbs and self-treatment.

I then decided to see if I could educate my family doctor and she gave me very conservative treatment for a few months of low-moderate dose singular abx, such as ceftriaxone. Total I was on abx probably a year, all orals (never did IV/IM).

Here I am almost 10 years later and still sick. I believe the infection was deep-seated in my system from a young age. I grew up in rural northern Michigan and played in the deeps woods on an almost daily basis.

I grew up drinking raw goats milk and the goat's "bags" were commonly covered with insect bites and likely were exposed to ticks. If LD can be spread through urine I'm sure it can be spread through milk.

Between all the bug bites I got, drinking raw milk and camping in the "UP," I'm sure I was exposed multiple times to the infection. I also found out just last year my dog has LD!

I don't doubt that I still have it but am not sure what to do this point. I am a non-traditional student and back in University full time.

I have no money, student loans, and medicaid insurance. There's not a chance I can afford out-of-pocket LLMDs. Don't judge me but I've been considering ordering Rxs from Canada or something and treating myself.

I don't know what else to do. I don't really have any options and I'm fairly certain I cannot find a doctor who accepts my insurance who would treat me like I need. Thoughts?

The one abx that I could really, really feel work was rifampin. Whoa. That was scary. I'm thinking about trying it again with maybe doxy. I saved my doctors notes and could follow the same dosages as before.

Herbs, I'm less inclined to. I have literally tried 100s of herbs and supplements and none were very effective, except at draining my bank account.

(breaking up the post for easier reading for many here)

[ 02-22-2017, 03:24 AM: Message edited by: Robin123 ]
 
Posted by mm57553 (Member # 49608) on :
 
Have you considered an herbal protocol, like Cowden? You can order them online. Where are you located? Are you sure there are no LLMDs you could get to that take insurance? A few still do.
 
Posted by lpkayak (Member # 5230) on :
 
You sound smart and not like you are ready to quit. I had a lot of exposure from being on horse farms for a long time. I was 15 yrs before I was dx and treated with oral abc.

I will never be 100% but life is worth living. As hard as rifampin was to take I also felt biggest positive change with that drug.

You said you don't like herbs but it matters a lot how you take them. There is a fb group for Stephen Buhner. He has also written many books on how to use herbs. It requires a lot of work on your part to study and learn what he says. I will be back with correct spelling of his name.

Don't give up. You can do this. Google his name. There are many books but a few are most important. Use online fb group for support. Private message me or search lymenet for more info. Please don't give up

Ps his books are cheap on kindle and used on amazon

(breaking up the post for easier reading for many here)

[ 02-22-2017, 03:26 AM: Message edited by: Robin123 ]
 
Posted by lookup (Member # 44574) on :
 
We went with Rife (GB 4000) and homeopathy after doing herbs.
Diet was huge. Our son never had autoimmune but through this whole adventure that developed. So that means 100% grass fed meat, veggies, fruits and sweet potatoes, olive oil, coconut oil and avocado oil.

Zero grains, legumes, gluten,dairy, sugar, nightshades. That was all in the book by Ballentyne the Paleo Approach to Autoimmune.

Might be nice to touch base with K84 as he is a Michigander too.
 
Posted by lookup (Member # 44574) on :
 
Been thinking some more- maybe have a look at Perry Tyler's site The Tick Slayer.
http://thetickslayer.com/

It sounds like you have quite a bit of experience with Lyme- just remember to have detox pathways open. Coffee enemas or saunas (university have a sauna?)

In the summer Perry used her old car. She'd bundle up in sweats and go sit out in her car for a few minutes. I'm just thinking of things that are cheap but work. (yes I know about phthalates from plastics in cars but sometimes you just gotta do what ya gotta do)

The Tick Slayer, has a set of essential oils that goes after Lyme and company.

Like I said up thread - avoid feeding inflammation with food if you can.

For parasites there is the salt and vitamin C protocol.
 
Posted by lookup (Member # 44574) on :
 
I think I'd try the Tick Slayer oils before antibiotics because then there would not be the gut damage.

On her site she has 2 buttons you can click. One is for "I Have A Plan" and the other is for "I Don't Have a Plan"

Parasites: Here is a video on the salt and C.

Interesting.
https://www.youtube.com/watch?v=nlkVkfqB_9c&feature=youtu.be
 
Posted by Catgirl (Member # 31149) on :
 
I like everything lookup said, and the Tick Slayer's info is good. Her book is interesting. Lyme hates heat. You can get a portable inexpensive far infra red sauna off amazon (under $200, last time I checked). I feel great after the FIR sauna.

Also, some people have luck with MMS. Kerri's book Healing Autism tells about a method that is used for autistic children that works. I think docs haven't figured out that those kids have lyme and company. MMS is super cheap. Read the book.

https://www.amazon.com/Healing-Symptoms-Known-Autism-2nd/dp/0989289044/ref=sr_1_fkmr0_1?ie=UTF8&qid=1488211774&sr=8-1-fkmr0&keywords=keri+rivera+books%2C+mms
 
Posted by hopingandpraying (Member # 9256) on :
 
Welcome to Lymenet!

So sorry you are going through this. Please take the end of your rope, tie a knot, and HANG ON!!!

Bear with me because I have lots of information for you (and I hope it helps!).

I presume you are in Michigan, so I sent you a pm with some names of LLMDs there.

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/MichiganLyme/info

Maybe they can help.

Some more resources for you (including Support Groups info):
http://whatislyme.com/websites-and-support-groups-by-state/

www.mlda.org

http://www.lymenet.org/SupportGroups/UnitedStates/Michigan/

Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Here is a link found on Lymenet for "Financial Help and Other Information":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%.
View on www.lymetap.com

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large lock of text due to neurological problems from Lyme. Thanks.

For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online or find a station near you by putting in your zip code in their link:

http://www.klove.com/music/radio-stations/

Your life most certainly matters. After all, you are "fearfully and wonderfully made."

Prayers and blessings to/for you on your healing journey.
 
Posted by bluelyme (Member # 47170) on :
 
bvt is fun ...i second rife tx
 


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