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» LymeNet Flash » Questions and Discussion » Medical Questions » Treatment Past the 10 Year Mark?

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Author Topic: Treatment Past the 10 Year Mark?
TickTock4422
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Member # 12553

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Hey Guys,

I’m not new to the forum but, have just come back because I know when one of us needs an answer to a big question, you will receive it here as you all as the most thoughtful, kindest, and most knowledgeable group that I can go to to get support and to obtain an answer to this most greivence question that is haunting me:

“Is there anyone out there that has been in treatment 10+ years or, know of someone that has?”

I have had Lyme, Bart, and Babs., for 21years before I was diagnosed. I did have the EMS rash but is was in my buttocks area so of course I didn’t look at it. We were in Arkansas canoeing and sat in a wooded area, got a rash, and we all thought I had contracted Poison Ivy.

This is going on my 11th year In treatment and I cannot get a straight answer from my LLDD. I can say that from the beginning of treatment I am 60% better but my Cognitive Neuropathy, constant joint and muscle pain in arms, legs, knees, feet, and ankles is unrelenting. I have had blurred vision since I was diagnosed also.

All I get from my Doc when I ask the question is:

“We haven’t given up on you yet.”

I did search the forum when I was 7 years into treatment and only found evidence of Lymies with the longest time treated as 5 years. When do you meet the diagnoses or are put in the class of THE 10% THAT NEVER GET BETTER IN LATE STAGE LYME? I certainly have put myself there!

I look at the mound of meds, and right now the addition of Malorone as treatment for Babs for the 3rd time and just CANNOT do it anymore!!!! I’m getting somewhat less compliant with my treatment because I’m tired of it all.

Any assistance will be appreciated.

Thanks in advance,

Ticktock

Posts: 50 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
MissVictoria
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Member # 45232

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Everyone is unique. I would say that if you've been doing the same thing for years and it isn't helping, you might want to explore other treatment options. There are a lot of great Lyme-Literate holistic practitioners.

You mentioned going to a LLDD. I'm not sure what that stands for, but do you go to a LLMD? If not, I definitely recommend going to one. If you post in the Seeking A Doctor forum, people can recommend some in your area.

There is definitely hope, it just takes time. I hope you feel better soon! [Smile]

Posts: 127 | From New Jersey | Registered: Jan 2015  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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So very sorry TickTock4422.

Quote from world renowned LLMD Dr H. ;

"Don't give up. We are finding answers. Please hold onto hope. You can get better."

Dr H. got his wife into remission, she is 1 year with no meds.
Scroll down for his latest interview about his new protocol.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/137385?#000000

Sending healing wishes.

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kidsgotlyme
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TickTock, I am so very sorry for having to be in active treatment for so long.

Have you had your home and/or work checked for mold. That is why some people can't get better.

I do know one person in my local area who treated for over 10 years. I'm not sure what she does now, but I did see where she got married so I am hopeful that she is now off of treatment.

I hope that you can get your LLMD to look at Dr. H's new Dapsone protocol. It seems to be the answer so many have been looking for.

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

Posts: 1428 | From Tennessee | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
duncan
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You are not alone. I've been treating for close to 15 years off and on - more on than off. I think we are a quietly growing fraternity.

Lots of exciting things being done these days, so I remain ever hopeful.

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Robin123
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I'd say keep trying new stuff. You never know when something's going to help.

I have two suggestions - for joint pain, I take capsules of turmeric. I get the powder at the health food and dip 00-size capsules into it, and take one in the am and pm. Takes down pain fairly quickly for me.

The other suggestion is for the blurred vision you mentioned. I drink mangosteen juice everyday and that stops all Lyme eye symptoms for me. I get the juice at the health food store. Can also be purchased online.

Posts: 12579 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
TickTock4422
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Thank you all for the great suggestions and support! My LLMD in Washington DC is always switching my antibiotics and protocol around every 3 months or so.

The thing that I have not been compliant with is perhaps the most important treatment and That is Lactoferrin and Xylitol for the biofilm. As I said I am so tired of the entire treatment regimen! I know how important it is. This is where I have to
Improve on right now,

I know I am not helping myself, only hurting myself, but today right now I don’t have any more courage to continue with the harsh regimen with all the PILLS, POWDERS, DROPS, etc.

I am constantly worried about my Liver and Kidneys. I feel it’s just a matter of time I will get Cirrhosis and subsquent liver failure. I am always hearing from other MD’s how shocked they are about how much medications I take.

I just feel doomed with no end in sight...

Ticktock

Posts: 50 | From La. | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Robin123
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May I say that my 2 suggestions are natural ones, not pharmaceuticals. I think turmeric has a lot of good health effects in the body, if you check out the research, so I don't think it can hurt you. I really get joint pain relief from it such that I don't have to take an antibiotic.

Plus the mangosteen juice for my eyes. The juice is a very healthy anti-inflammatory juice - it neutralizes free radicals that are causing the inflammation in us.

So I encourage you to try stuff when you feel up to it.

Posts: 12579 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
terv
LymeNet Contributor
Member # 29410

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What is Cognitive Neuropathy?
Posts: 669 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
   

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