Gotta start somewhere, here I go....

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New Member

Date Joined May 2018
Total Posts : 11
   Posted 5/18/2018 7:47 PM (GMT -6)   
Okay, just to possibly help someone I'll post occasionally how this treatment is going, must say I've had some surprizes ... I feel more tinglies and stretchy/sunburnish feelings with the doxy/ comparison to the samento... It's not really fair to the samento though, because before it even really got a chance to show what it can do, I ended up in the hospital for a secondary infection in my bad leg, resulting in another prescription....cephalexin 500 4 x per day, now this has really put a wrench into the treatment, I have been on major herxing overload, I have to lay off the doxy and remfampin because I know I will make myself horribly sick if I take it all....

The secondary infection is cellulitis, it was almost missed, glad I spoke up for the dr to take a look, I thank the Lord for that, and also the fact that he allowed me to speak up to limd (lyme illiterate medical doctor) smile but even though he is lyme illiterate THANK GOD he went with the results being positive, instead of holding me to the standards of the cdc, in which case they would just have me to finish my life dying in this bed totally taken over by spirochetes.

aaaarrrgh so basically I have neuro lyme- lyme arthritis, possibly bartonella, and who knows what else...I am more or less stuck to this room where my adjustable bed is and my bedside commode, as I can no longer make it the 15-20 feet to the restroom...I do not go anywhere except church a couple times a month, I am so ready to get better....just a few months ago I could still do stuff as long as I had taken my 600 ibuprofen and tramadol 50, or since I am treating this, this past month it has really gotten bad, these spirochetes must have colonies of biofilm all over me, my leg and foot is swollen and stiff/tight, how in the world will I ever manage to deject these spirochetes/cysts from my muscles I have no clue...

the spasms look like convulsions, my whole body tightens up and it causes me to stiffen and lounge in whatever chair I happen to be in... The spasms are every single day now, apparently I have a spine full of lyme, yuk...The list of concoctions I am taking /drinking is quite goes like this
doxy (of course)
codliver oil
milk thistle
detox/cleansing support formula
activated charcoal
vitamin c
ordered more, but it hasnt come in yet...5mthf for my mthfr mutation
some stuff Dr Buhner says you must get if you have neurolyme, I don't remember what it is off-hand.
SO, hope i didn't offend anyone, just didn't know where to start...

Regular Member

Date Joined Apr 2018
Total Posts : 187
   Posted 5/18/2018 10:12 PM (GMT -6)   
Praying for you and all the Lyme suffering people love you ty for sharing you will be better just believe

New Member

Date Joined May 2018
Total Posts : 11
   Posted 5/18/2018 10:41 PM (GMT -6)   
Thank you, I appreciate it

Forum Moderator

Date Joined Sep 2016
Total Posts : 2299
   Posted 5/19/2018 9:18 AM (GMT -6)   
Hi I'm sorry you have to deal with all of this and I pray and hope that you start to get better soon.

I was looking at your list of things you are taking and wondered if you have tried any other collagen support, I see the cod liver oil but the great lakes gelatin or some other collagen may be something else you may want to add in .

Buhner suggest Uncaria rhynchophyla for neuro Lyme. He also suggests red sage(Salvia miltiorrhiza) and Chinese skullcap(Scutellaria baicalensis).

There is hope to get better, I have come far with treatment. Just does take time and also many bumps along the way for many of us.

New Member

Date Joined May 2018
Total Posts : 11
   Posted 5/19/2018 12:51 PM (GMT -6)   
Thank you for your response, I just ordered the Uncaria rhynchophyla, I hope it's the real stuff!

I am thinking of trying to go out on my mobility scooter to sit in the sun, I feel like being out in the fresh air and sunshine is the best medicine, I just don't want to burden others that may have to help me get on and off the thing (plus I am lazy)...

I just drank some cola and I'm feeling remorse, how can I expect my body to overcome all of this if I am turning around and adding poisonous substances to the mix, I really need to get my act together and stay away from sugary drinks, etc.

The plan for this week is no bad food or drink period.

Thanks for responding and I'm thankful to be able to express my thoughts at this time, I'm still shocked that I am in this situation.

P.S. I will add the great lakes gelatin, red sage(Salvia miltiorrhiza) and Chinese skullcap(Scutellaria baicalensis) to my "need to get" list smile

My husband may have ordered them though, I showed him the page where it has the neuro lyme protocol and he said he ordered me a bunch of stuff I didn't hopefully I will have everything I need!

What kind of symptoms did you have before and got rid of? How long did it take to start seeing improvement?

Post Edited (LovestheLord) : 5/19/2018 12:01:39 PM (GMT-6)

Forum Moderator

Date Joined Sep 2016
Total Posts : 2299
   Posted 5/19/2018 2:35 PM (GMT -6)   
Hi Loves the Lord,

Just be sure to check for side effects and contradictions when using herbals as they are potent.

Always start slow and with a low dose to see how you respond/react to herbal.

I had over 35 different symptoms, the worst was extreme heavy numbness that started in my head,face and neck and went to my whole body.

Waves and waves of heavy numbness in my upper chest, throat and neck. Trouble swallowing.

Neuro thumping, vibrations, itching, crawling, burning, biting, rage, extreme sadness and fear.

Audio sensory, many vision issues, muscle twitching, brittle, waxy hair, and more.

After starting ABX for a few months it did knock back the infections a bi,t but then new symptoms would come and go.

I am still treating at 20 months but I am doing so much better.

I do work full time but I will say it takes a toll due to stress , etc. I sometimes wonder if I didn't go back to work as soon as I did if I would have been better off/or further ahead.

The important thing is to try to treat your worst symptoms first to get rid of them. Buhner is correct that when you get some relief from these symptoms, joy will come back into your life.

Take care and I hope you enjoy the sunshine when you go out today.

Forum Moderator

Date Joined May 2014
Total Posts : 33909
   Posted 5/19/2018 6:55 PM (GMT -6)   
LovestheLord said...

My husband may have ordered them though, I showed him the page where it has the neuro lyme protocol and he said he ordered me a bunch of stuff I didn't hopefully I will have everything I need!

Awww...he's taking care of you...that's sweet.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

New Member

Date Joined May 2018
Total Posts : 11
   Posted 5/20/2018 12:31 AM (GMT -6)   
Symptoms that have lessened or resolved as of right now...
trouble swallowing (very scary and frustrating)
and most of the light flashes in my eye
So I am seeing very slow improvement...
my legs are very tight, hamstrings feel like cement
and feet are soooo irritated... very tight, swollen, feels like shards of glass in my socks
the feet are probably #2 after legs
and then the spasms... very annoying
YES My Dear Husband is taking care of me, he said he knows if I say it hurts it must REALLY HURT because my pain tolerance is pretty high, and he hates seeing me like this, it's frustrating that I can't help my family, they are out working in the garden and cleaning up and I can't help. I was always the workaholic one, up earliest and working all day... I don't even recognize myself anymore.

New Member

Date Joined May 2018
Total Posts : 11
   Posted 5/20/2018 12:35 AM (GMT -6)   
I'm so sorry, your symptoms sound so much worse than mine, I am so thankful I somehow was spared some of those, I don't know how I would have coped!
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