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» LymeNet Flash » Questions and Discussion » General Support » Who is ACTUALLY BETTER?

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Author Topic: Who is ACTUALLY BETTER?
DeafFromLyme
LymeNet Contributor
Member # 18795

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I am teetering on the stop treatment fence. I know its cowardley and weak but I just can't live like this anymore.

Anyway, what I need to know is how many of you have actually improved with treatment? Will I EVER be DONE treatig Lyme or will I have to fight this for the rest of my life???

--------------------
Erika

IgM Band 23 +

www.24weekperfectbaby.blogspot.com

Son's blog born at 24 weeks.

Posts: 356 | From massachusetts | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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Rather than stop treatment...

Adjust it.

Go back to the drawing board.

If you can't live with the plan you are doing...

You need a new plan.

Lower doses, slower starts, more detox, etc.

Don't give up.

Giving up means going down hill.

And I'll ask you this... how low do you want to go?

You've got 24 hours for a pity party... we have them here all the time, everyone is invited.

Then pull up your boot straps... and Nike.

You can do this. It just needs to be made better so you can tolerate it.

Otay?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Ocean
Frequent Contributor (1K+ posts)
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I ditto Tincup's advice. You may need to start more slowly.

Some people have had success with Singular. One person here takes it 2 hours before their abx and their herx's are very minimal now.

Can you see if your LLMD will prescribe something for you to try like that?

If you don't get treatment, you will get worse. I am scared to death to start treatment (see LLMD next week), yet living like I am now is not truly living. It's hard to remember what life used to be like before Lyme. I do remember being happy though. And active.

Please don't give up now. See what you can do to help with these herx's and maybe find another LLMD. If you are willing to drive, I can PM you the name of the one I will be seeing. He takes insurance, which I remember you saying was important in one of your other posts.


Take care,

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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NMN
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HI Erika... I know exactly what you mean. I think I have been feeling the same way the last few days. I wonder when the herxing will actually end if it is herxing at all.

Then I just think well I would rather die trying to kill these monsters than to accept defeat. Maybe ease off a bit so you can get some relief.

As you can see by my treatment I am throwing the kitchen sink at them.

Hope you feel better soon. [Smile]

--------------------
Pos BB and Bart(Q & H IGG pos)
Began treat 1 year after start of illness. Diagnosed Feb 2007.

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TF
Frequent Contributor (5K+ posts)
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Erika,

It is now nearly 4 years since I finished my lyme treatment. I am symptom-free, enjoying my life--the same life I had before lyme disease.

Just wanted to let you know this today. I have many friends who have been treated for lyme and gotten rid of it also. I sent them all to Burrascano-type docs. (This is the key, in my opinion.) So, I am not the rare case.

At least 3 of my friends are ladies that had the fibromylagia diagnosis for years.

Others are men and women who had lyme for years or maybe just for 1 year before seeking treatment.

I had lyme, babs, and bart. I was terribly sick for 5 years before geting my diagnosis. But, I had lyme at least 10 years if not 15. It was episodic at first in my case (7 months horribly ill, then 5 months of totally normal health).

People who don't hang in there don't get better. We all get to a point where we want to stop treatment.

Those who don't continue treating their lyme lose their jobs, their spouse, their friends, their health insurance, their home, etc. By the time they decide to fight this thing to the end, they have no resources with which to do it.

So, I suggest giving it your all in the beginning. Sometimes a change in treatment or even a change in docs is in order.

I went through 2 lyme docs before I got to the third one who knew enough to cure me.

If you stop treatment all together, you WILL have lyme for life.

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lou
Frequent Contributor (5K+ posts)
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Some of us will not get cured. So, the goal then becomes staying functional and having a life. If I stopped treatment, I would not have these things. Don't know how your story will turn out, but sometimes chronic means chronic, and then you just look for ways to stay ahead of the germs.

But I hope you will do better than this. In short, your answer is not known yet.

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mushroomman06
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Ericka

Dont give up!

Comments made from OCEAN, NMN, TF, are those that I have followed with my up hill battle.

10 bands positive, low B12, messed up VitDs, C6 Peptide of 11.52, low CD57, and able to check so many symptons on the list. My body was turning into someone with Alzheimers. A Zombie!

I consider my self 100% to the good, although I know it is only remission, my LLMD and I discuss this.

I had a good question and answer relationship with my LLMD. He put the rules down that I was to follow and it was my responsibilty to adhere for progress.

I had bad times and good times, but as time went on the good outnumberd the bad. When times where to bad my LLMD would listen and adjust the treatment. This helped with the recovery and the over all conditions that my body was going threw with such agressive treatment.

At times I felt like gearing down because I was feeling so good, but my LLMD would not see this. He would make changes in my meds, follow my lab. reports, ask questions. What a learning experience for me.

Please dont give up!

Posts: 108 | From maryland | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
swachsler
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Thanks, TF, so much for posting your success story. It is SO good to know it's possible! Thank you, thank you, thank you.

DFL, there have been many times I've felt I can't go on. The inability to communicate, the pain, the losses, it's devastating.

I've had people give up on me -- my therapist terminated w/me bec she refused to use a TTY to do sessions and bec the psych symptoms made me a different person. My best friend of 16 years won't speak to me anymore. We were like family.

But I just have pinned my hopes and faith on these treatments, because I want to kill the bugs and get my life back. Even tho the treatment has been *brutal.*

I say this as someone who was already disabled by chronic illness before Lyme. So, I will never be healthy and nondisabled, *however* Lyme, babs, etc., are potentially curable, unlike my other disabilities. It's a distinction that means the world.

I think I might follow the advice above, myself, and consider scaling back a bit, bec my tendency has been to go full throttle as much as my LLD will allow, no matter how miserable (for myself and those around me) and nonfunctional it makes me, because I so desperately want to kill the bugs *now*!

Take good care.

I know it feels incredibly lonely, but you're not alone.

-Sharon

Posts: 223 | From Western Mass. | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
DeafFromLyme
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Heres where I think part of my problem is.... My doc is not listening to me. I am so non functional, I can't get out of bed, I have lost SO Much weight, can't eat, can barely drink and he just keeps telling me to keep going!!!

I can't keep going! I am out of bed today for the first time because I stopped this madness adn did NOT take my meds last night or today, HOLY S--T what a difference! Its me again!

I know I am not the only one who goes through this, trust me I do, I just feel like I can't do it anymore.... Literally can't do it. I'm sorry for being so negative and whiney but I'm just done.....

--------------------
Erika

IgM Band 23 +

www.24weekperfectbaby.blogspot.com

Son's blog born at 24 weeks.

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Ocean
Frequent Contributor (1K+ posts)
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Erika,

I think you should find another LLMD. Even though they are treating the same disease, each one can be so different with protocols.

I'm glad you are feeling better today.

Is nausea bothering you as far as eating/drinking? Do you feel this is where the weight loss is originating?

I don't think that a doctor should order his patient to continue treatment if that is the case, particularly if the patinet is becoming severely underweight/malnourished. if you are not getting your nutrition, then treatment really isn't going to help in the long run because your body is going to be so depleted.

Please seek a second opinion or go to your PCP if you feel comfortable.

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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DeafFromLyme
LymeNet Contributor
Member # 18795

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Hey Ocean

Yes It is due to severe nausea.4 weeks or so ago I was 147lbs... Today....126 and am feeling pretty stickley..

Anyway enough of my whining... How are you feeling? Your appt is coming soon right?

--------------------
Erika

IgM Band 23 +

www.24weekperfectbaby.blogspot.com

Son's blog born at 24 weeks.

Posts: 356 | From massachusetts | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Ocean
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Erika,

Wow, I would definitely seek a second opinion. 21 lb weight loss in 4 weeks is not healthy. I would think your LLMD would want to figure out which med is causing the nausea and then substitute for another medication with equal effectiveness. Especially since you said you cannot drink fluids. That is vital.

I can't say I blame you for stopping treatment. I've managed to gain 11 lbs (which I needed to) in the past 6 weeks or so and it makes me feel a little better about starting meds because I have a little to play with in case I should start losing again.

Yup, my appointment is a week from today!! I can't believe it's so soon, but very glad.

Since you are feeling better, make sure you are drinking enough water and get in those electrolytes, especially if you've had vomiting or diarhea.

Although I am not a doctor, so my advice cannot be substituted for medical advice.

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235

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Hi Erika, I just wanted to let you know that I went from being utterly sick and bedridden for months on end to 85% functioning.

It has definitely been a rollercoaster ride and I've been through hell with the herxing, picc lines, complications like gallbladder disease and meningitis, etc. - but it had to be done to get where I am today.

I'm still sick with babs and bart but I just changed LLMDs because I wasn't satisfied with my former one. I am following his protocol and I already feel much, much better - and it's only been a week!

Please don't give up. I've been treating non-stop for 6 years. Sometimes you have to back off but then get right back into it.

Best wishes - Lymelady

--------------------
I want to be free

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Geneal
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I am better.

I am shooting for remission.

I am working again.

Two years ago I could barely walk or find words to complete a sentence.

I am a Speech Therapist.

Words and speaking are my trade.

I still have more treatment time on board,

But I have "me" back.

I agree with the others that you need to consider finding

Another LLMD. One that works with you.

Hugs,

Geneal

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trishee
LymeNet Contributor
Member # 9699

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Ok. found your discussion again did you get my response and my personal email? Feel free to use it. I'm thinking this is the part we can't list names. Hope you get this. Now that I know the difference between this and personal message we can exchange info. I have my new LLMD name and phone #. Excellent care and is becoming very busy so don't delay. Let me know if you want the number. Please don't give up. I know its hard with kids, I have two. Your doctor should be taking better care of you so maybe its time for a change. I stopped taking meds for a week while I went away and felt good but when I went back on I ended up paralyzed again. I wish you well and hope I can help.
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
GenaD
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I am better! I haven't been on here in months--much of that due to moving, going through some personal issues and having to go back to work--but I'm also better.

I had to stop treatment because I had to work, and treatment made me herx and feel horrible. I was terrified that I wouldn't be able to work, but so grateful that I have been able to. I am about 85% better.

I have moved to Long Island from Florida where I was living for the last 18 years. I was exposed to mold in my Florida house, and I am convinced that had much to do with me feeling so horrible. I have heard that if you are exposed to mold it makes it next to impossible to recover from Lyme.

Also, some people are able to deal with mold better than others. Just thought I would mention this...It may be a factor in many people's recovery...

--------------------
"Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has."
--Margaret Mead

Posts: 290 | From New York | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
lymeric
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I have been "cured" for 1 year. (80% better.) I seem to be in better shape than most posting here, but was as sick as anyone. (1995)

I'm living proof that this can be done without long-term antibiotics. Although had I been on them during the period of healing - achieving the same results - I'm sure I would tend to attribute success to the abx.

Which would be very human of me. That's why studies trump anecdotal evidence. I'm sorry if some reading cannot accept this. Please respect my position. Don't deny me my wellness. Especially because somehow, I managed to get myself "better." [group hug]

Erika, follow your heart, but don't get lost!

The paths to wellness are as varied as diseases themselves, and those who have them.

You can prevail to find your way! [Smile]

[ 03-16-2009, 01:55 AM: Message edited by: lymeric ]

Posts: 76 | From tolland county, ct | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
   

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