This is topic What happens now? in forum General Support at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/3/18300
Posted by savebabe (Member # 9847) on :
 
What happens when abx just don't work anymore? I have been treating lyme and babesia for years, and always relapse when not on meds.

My llmd told me today that he wants to start me on herbs instead of all the abx I have been on. He said that a lot of patients just relapse after treatment, so his herb protocal may help.

MY worry is that, the alternative meds fail to work and I am left with no options.


Is this how it is all going to end? [Frown]

Will chronic babesia and lyme eventually kill me?
 
Posted by stymielymie (Member # 10044) on :
 
check post in medical from last week
willcronic lyme be terminal
posted by stymie


docdave
 
Posted by Lymetoo (Member # 743) on :
 
Don't give up when you're about to turn the corner!!!
 
Posted by savebabe (Member # 9847) on :
 
I know that I am in a horrible mood, but I know one day this disease is going to get me. Especially chronic babs. [Frown]
 
Posted by Lymetoo (Member # 743) on :
 
See if you can postpone it another 50 years, OK?? [Smile] [group hug]
 
Posted by bettyg (Member # 6147) on :
 
[group hug] [kiss] save babe [group hug] [kiss]

we all knew it was going to get much WORSE before it gets better; just hang in there for better days/months ahead. [Wink]
 
Posted by savebabe (Member # 9847) on :
 
Thanks guys, I feel a little better today. [group hug] My llmd wants to start me on the Cowden Protocal next month, so there may be some hope.

He feels that this herbal mix can hit the lyme and bart better than abx. I am a little skeptical, but I am going to try it.

Thanks again everyone. Usually I am never like this.
 
Posted by sixgoofykids (Member # 11141) on :
 
My LLMD in NY just told me this week that he's had GREAT luck with Cowden helping people who relapse off abx. His wife takes them and feels the best she's ever felt. So, have hope, this could work.

I've not been on abx long enough to switch, but we're talking about adding some of the herbs to my abx protocol next month after I've had some time to adjust to the new meds.

Then at some point, we'll switch over completely.
 
Posted by CaliforniaLyme (Member # 7136) on :
 
SaveBabe, I have never seen herbs get people into full remission but I would urge you to follow his advice- he may have happened upon a combination which helps people maintain- and if not you can always go back on antibiotics!*))*!!

Just don't despair- in my experience doing the memorial page the most likely thing to kill you is yourself!!! Suicide definitely ranks #1 in killing Lymies- although the disease *does* kill on it's own- it kills people genreally who are late third stage and you don't sound like that!

We are all here and I have seen you post for a long time now- you are a nice person and I don't htink your doc will abandon you!!!! And I don't htink he is abandoning you!!!

If you said BUHNER protocol I would advise against it because I have not seen anyone locally even substantially HELPED by the Buhner protocol- but I know a couple of people who are maintaining chronic Lyme comfortably on Cowden!
Maybe you can be one of them*)!*)!

So...
that's my advice- have at it*)!!! See what happens- you can always come back to abx*)*!)!

Very
Sincerely,
 
Posted by CaliforniaLyme (Member # 7136) on :
 
p.s. AND MAKE SURE YOU GO BACK ON ABX IF YOU DECLINE!!! Stand up for yourself!!! If the doc won't put you back on abx even though you did better no matter who that doc is they may be changing the way they treat due to pressures of posisble licensing actions- many aggressive LLMDs end up becoming less aggressive in time when they get under more scrutiny- cases in point if docs become prominent members of ILADS they tend to become less aggressive- and to back off longer term abx or IV- because of prominence and fear of reprisals- I know our dearest Doc S in CA became less aggressive when under the proverbial microscope- than he had been before- they need to dot every i and cross every t!!!

Someone PMed me re this thread that a doc in NY is doing this, is limiting abx treatment to 6 months rather than open-ended- and is changing all longterm abx patients to COwden protocol-

They didn't want to post it-

Docs name starts with H-

I don't know if it is true but the person is a longtime quiet good natured poster whom I have no reason to disbelieve-!!!

So I would ask- and if you do decline, press to go back on abx!!!
 
Posted by CaliforniaLyme (Member # 7136) on :
 
p.s.s. ANd again, if you had said Buhner I would have said NO NO NO DON"T DO IT!!!!!!!!!!!!!!
But COWDEN is helping some people I know-
not remissions!!! not cures!! only abx have I ever seen do that-but helping maintain!!!
Which also has value!!! GREAT value for people who can't tolerate abx-

Buhner= nope! Cowden=???

The jury is still out*)!
You can be a member of that jury*)!*!)!
 
Posted by sixgoofykids (Member # 11141) on :
 
quote:
Originally posted by CaliforniaLyme:
Someone PMed me re this thread that a doc in NY is doing this, is limiting abx treatment to 6 months rather than open-ended- and is changing all longterm abx patients to COwden protocol-

They didn't want to post it-

Docs name starts with H-
Dr. H has had very good results with Cowden, but he has neither become less aggressive nor changed everyone over to Cowden.

He takes it on a case-by-case basis, as he should.

I had an appt. with him this week. He told me I still have a long way to go on abx because I've had this untreated for so long. He has me on more aggressive abx than I typically read here and mentioned needing to be very aggressive.

He also mentioned that in treating the Bart I just got diagnosed with if I don't see cognitive improvement that we will have to switch to IV in a few months.

I don't doubt that he's switching some over to Cowden based on the results he's seen with it, but I wanted to assure you all, he's still aggressive and hasn't done it across the board.

He did mention switching me over in the distant future, but that we would also switch back if need be.

My daughter and a local friend are under his care and both are also on agressive abx.
 
Posted by CaliforniaLyme (Member # 7136) on :
 
Nice to hear Goofy!!! Very nice!!!

Maybe a general trend because of his succeess with it? I don't know!!! I know my angel LLMD got less aggressive when he became ILADS pres so made sense when read PM-! Maybe with some? Just repeating was was PMed me-

For sure a BUNCH of you guys with same doc have all had this mentioned as possible path and didn't used to be- so maybe just the success with some people has made him trust it more-

I don't know*)!

Savebabe- your mailbox is full!!!
 
Posted by AZURE WISH (Member # 804) on :
 
sorry you are still sick savebabe [group hug]

I hope this new herb combo you are going to try helps.

How long were you treated with out breaks (especially for babs)... do you think maybe it wasnt long enough -

especially since you seem to have 3 things to treat. I have heard people say that bart and babs can be stubborn to get real control over.

I have been sick for 20 years. I have lyme and babs... Some days I feel like I am dying but neither disease has ever come close to killing me.

I know lots of other people on here have been sick a long time too and survived it.

I think Sarah is probaly right that the majority of deaths are suicides.

So hang in there [group hug]
 
Posted by sixgoofykids (Member # 11141) on :
 
quote:
Originally posted by CaliforniaLyme:
so maybe just the success with some people has made him trust it more-
I think this is most likely the case. [Smile]
 


Powered by UBB.classic™ 6.7.3