Severe brain & skin involvement w/ Late Lyme & Babs--Treatment reco's?

If You Were Me, What Would You Do?
5
Antibiotics - 62.5%
2
Herbs - 25.0%
0
Homeopathy - 0.0%
1
Hansa - 12.5%
0
Sponaugle - 0.0%
0
Envita - 0.0%

 
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julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 5/1/2018 2:09 PM (GMT -6)   
Hi, everyone. Thanks for reading this. You are all so helpful and knowledgeable on this site, so I thought I would give this a shot. I have late-stage (neuro) Lyme disease. It's been 5 years since my tick bite. Wasn't diagnosed for 3 years after that. Have tried abx 5 different times, only managing to take any one of them for 2-3 weeks for various reasons. I was on colloidal silver and DesBio homeopathy for a few months about 3 years ago. That's all the treatment I've had. I have such severe herxing that I end up going off of everything too soon. Like, when I took doxycycline, and also amoxicillin (not at same time), I went into psychosis -- hallucinations, memory loss, blackouts, personality change, non-stop suicidal thoughts, severe pain, swelling, anxiety, insomnia, and severe facial burning (which I had before abx; i.e., it developed after the tick bite). (Twice I had hallucinations in between treatments.) These severe reactions have also happened with natural treatments (Lauricidin, Chx herbs). I'm trying to get disability due to my severe skin photosensitivity. I'm unable to work much. My life has basically stopped because I can't be near or around any light for long, even artificial, especially when I'm treating. My question is, considering my severe brain/neuro and skin involvement (and now joints -- hands/fingers), do you think I could possibly heal completely just using herbs, or do I need to keep pursuing abx? I mean, if your mother or child were in my situation, would you be like, you need to go to Sponaugle or Envita ASAP, or would you say, we can self-treat with herbs or homeopathy? Or Hansa? I say Sponaugle or Envita because when I am in treatment I cannot function and need to be cared for and seen by a doctor daily. And those are the only places where that is an option, that I know of. Thank you so much. Sorry this is so long.
Bitten 2013 & 2014
Diagnosed w/ Lyme 10/2015. W. Blot -- CDC Neg., IGenex positive.
Diagnosed w/ Babesiosis 10/2015 -- Pathgroup titer of 1:256.
Doxy 12/2015, 2 wks.; 3/2016, 3 wks.
IV Rocephin 1/2016, 12 days.
Colloidal Silver + DesBio homeopathy Lyme & Babesia 3/2016-5/2016
Minocycline 5/2016, 9 days.
Amoxicillin 3/2017, 3 wks?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 5/1/2018 4:51 PM (GMT -6)   
Hi julala - welcome!


I wouldn't self-treat - I would definitely have a LL Dr. treat you...whether that is a NP or and MD.

I personally have chosen a LLMD - so I treat with antibiotics.

If you do pursue antibiotics, I suggest you find a LLMD who does a pulsed approach. That way there are breaks i.e.: drug 'holidays'
That's what I am doing now...I am going to a lyme clinic in Washington, DC.

If I was to choose an alternate treatment center, I would choose Hansa over Sponaugle or Envita.
Just from what I've read...I think there is better care at the Hansa and the Dr. there is constantly researching/studying.

We encourage our new members to read through the information contained in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.

You can send me an email if you'd like more information on the clinic I am now going to.
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

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2302
   Posted 5/1/2018 5:55 PM (GMT -6)   
Hi and Welcome!!

If I had it to do all over I would go to Hansa.

You can do a search here on other members experience there. WE do have members that went there and they have posted I the past.

Is there any way a family member, friend or caregiver could go with you for the two weeks there.

I would at least talk to Hansa and explain your situation and maybe they can offer some input to help in making your decision.

Take care and I wish you the best of healing.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 5/1/2018 7:33 PM (GMT -6)   
I treat with herbs. I could not tolerate antibiotics and suffered fir months after taking just 7 days of minocycline and a year later same thing happened with 7 days of Augmentin.

I take tiny doses of herbs and still have herxing, though I got it manageable right now.

If I were you, I would seek medical help not for antibiotics but for help figuring out what else is going on that is causing you to herx so badly. The following doctors could be useful for this - Functional MD, LLMD, a provider who uses a bioresonance machine.

Just be aware that getting to the root issues may require testing for different things, and a lot of that testing is out of pocket cost.

I have not tried bioresonance, but it is on my radar.

I've been treating myself using Buhner's protocols since June and have made very slow and bumpy progress. I also have CIRS from mold, HLA-DR genetic predisposition to Lyme and multisusceptible to all biotoxins, great difficulty detoxing, and I've knowingly been sick since 2009 and had mild to moderate symptoms since early childhood. Have lab verified Lyme and ehrlichia and strong signs of bartonella. Babesia I'm not sure about.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2041
   Posted 5/1/2018 7:39 PM (GMT -6)   
Hey. I reread your post again. You mentioned Hansa. From what I've heard, they work on getting the whole body balanced and functioning properly and they use bioresonance. I'm sure it's very expensive. If you have that kind of money and are open to alternative treatments, that may be a helpful option for you.

There are other posts about the place. Search it on here and read what's been said.

julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 5/2/2018 4:18 PM (GMT -6)   
Wow, thank you, everyone, for this great information and advice. I will post more later...

julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 5/3/2018 1:31 PM (GMT -6)   
Girlie, thank you. I emailed you.

I wish I could reply to each one of your posts separately. Goshawk: Over the past year, I have read all the posts I could find on here and elsewhere about Hansa, Envita, Sponaugle, and I still haven't been able to decide. That is one of my symptoms: extreme trouble making decisions, especially about how to treat. I did send in a new patient app. to Hansa. I was told the doc (supposedly) looked it over and said yes, we can help -- come for two or three weeks. I am so skeptical. Like, I don't even believe that he looked at it, and I think they probably tell the same things to everyone.

But I have talked to one person who went there (Hansa gave me her #) and one lady who took her daughter there. Both said it was great. The lady who took her daughter there later took her daughter to Envita. She said treatment was harsh but worth it, because her daughter is fine now. She thinks "the drops" from Hansa may not be enough. That said, I am now leaning toward Hansa or Sponaugle. But I have been doing this back-and-forth thing for close to three years. And in the meantime, the disease is progressing. And I don't even know if I will be able to raise the money to go to these places!!

WalkingbyFaith: thank you. Yes, a Lyme-literate functional med. MD would be great. There are none where I live, so I don't know I would do that. There a non-doctor about 2 hours away who has a bioresonance machine and is known for helping people with Lyme. Maybe I should try him before trying to get to Hansa.... Ahh!! I don't know! How does one make a decision when one's executive functioning skills are negatively affected by Lyme??!!!

Thank you all so much! This really has been very helpful!!
Bitten 2013 & 2014
Diagnosed w/ Lyme 10/2015. W. Blot -- CDC Neg., IGenex positive.
Diagnosed w/ Babesiosis 10/2015 -- Pathgroup titer of 1:256.
Doxy 12/2015, 2 wks.; 3/2016, 3 wks.
IV Rocephin 1/2016, 12 days.
Colloidal Silver + DesBio homeopathy Lyme & Babesia 3/2016-5/2016
Minocycline 5/2016, 9 days.
Amoxicillin 3/2017, 3 wks?
On 37.5 mg Seroquel and 94 mcg Levothyroxine.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 5/3/2018 2:03 PM (GMT -6)   
You can reply separately.

If you go to the person's post that you want to reply to - click on the 'bubble' in the upper right hand corner of their post where there are several ICONS.(like those cartoon bubbles when someone is speaking)

It will open up a new post - and you can type your response underneath it.
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

julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 5/3/2018 2:32 PM (GMT -6)   
Girlie, the only icons in the upper right-hand corners of the posts that I see are: Quote this post, Ignore and alert Admin. I'm sorry, I can't figure it out!!
Bitten 2013 & 2014
Diagnosed w/ Lyme 10/2015. W. Blot -- CDC Neg., IGenex positive.
Diagnosed w/ Babesiosis 10/2015 -- Pathgroup titer of 1:256.
Doxy 12/2015, 2 wks.; 3/2016, 3 wks.
IV Rocephin 1/2016, 12 days.
Colloidal Silver + DesBio homeopathy Lyme & Babesia 3/2016-5/2016
Minocycline 5/2016, 9 days.
Amoxicillin 3/2017, 3 wks?
On 37.5 mg Seroquel and 94 mcg Levothyroxine.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 5/3/2018 2:41 PM (GMT -6)   
julala said...
Girlie, the only icons in the upper right-hand corners of the posts that I see are: Quote this post, Ignore and alert Admin. I'm sorry, I can't figure it out!!


It's the Quote this post.

If you click on it, (in the post that you want to reply to) a whole new post comes up with what that person posted. Then you can type below their post and answer them.
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

julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 5/3/2018 2:52 PM (GMT -6)   
Girlie said...
julala said...
Girlie, the only icons in the upper right-hand corners of the posts that I see are: Quote this post, Ignore and alert Admin. I'm sorry, I can't figure it out!!


It's the Quote this post.

If you click on it, (in the post that you want to reply to) a whole new post comes up with what that person posted. Then you can type below their post and answer them.


OMG. Thank you!!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33963
   Posted 5/3/2018 2:55 PM (GMT -6)   
julala said...
Girlie said...
julala said...
Girlie, the only icons in the upper right-hand corners of the posts that I see are: Quote this post, Ignore and alert Admin. I'm sorry, I can't figure it out!!


It's the Quote this post.

If you click on it, (in the post that you want to reply to) a whole new post comes up with what that person posted. Then you can type below their post and answer them.


OMG. Thank you!!


See - you got it!!!
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

julala
Regular Member


Date Joined Jan 2017
Total Posts : 35
   Posted 6/11/2018 1:50 PM (GMT -6)   
Hi,

I accidentally posted a new topic regarding our discussion here about Sunshine Clinic. So, if you want to hear about my experience there, see the new post titled, "Sunshine Clinic experience."

Or I can re-post it here if you think that's best.

Thanks!!
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