How do I build confidence that long term abx is best for my health in the long term?
How do you put your health and trust in LLMD when there is no data on long term abx outcome etc?
How do I build trust that this protocol works and I will get better/not worse?
Where can I read about success stories and talk to people who have healed with late stage neuro lyme?
After 12 years I have learned to not put my faith in doctors....so I am having great difficulty especially when the thingsI have tried make me so much sicker/with worry about lasting repurcussions.....and I want to be able to function for my family and make a living?
I fall in the late stage neuro lyme category( optic neuritis, coordination, jerking , twitching brain fog etc.) The sickest I have been in the last 3 years was from an herbal protocol crash and now my first experience with abx (flagyl/diflucan-fagyl 1 week-diflucan overlaping 3 weeks. That was well over a month ago and and I am still in downward spiral to the point that I think I will need to take a leave of absence at work. I developed new and lasting symptoms from the herbal crash and took and 5 months to recover. I worry about this crash and how long it will take to recover/will I have additional symptoms. I was functional before/now I am not functional.
Need some coaching on how to I convince myself this is the right path for me and it works and the LLMD's are correct?/not just another misleading silo'd specialist?
Posted by seekhelp (Member # 15067) on :
I look for results. I truly believe there are many quack LLMDs and other specialists. if treatment helps greatly, the Dx was right. If you go 12-18 months with little to no change, I think the doc's way off in their Dx. Some people believe the 2,3,5 yr Tx plan is the norm. Not according to experts like WildCondor and others who have seen the best money can buy.
THe proof is in the pudding or lack of symptoms. There comes a point where you know in your heart that your situation will not get better w/o intervention.
I believe some cases of Lyme disease also may have pychiatric causes too (anxiety/depression) moreso than bugs crawling. Not all by any means, but this aspect is shunned 100% here for the most part.
As Timaca eloquantly states repeatedly, rule out all other possibilities (viral, other bacteria, vitamin deficiencies, etc.).
Posted by cactus (Member # 7347) on :
For me, it was simple -
I had given the IDSA-type mindset docs many, many years.
I had given alternative med docs many, many years.
None of them had given me more than brief hope, which always burned out with the return or eventual increase in symptoms.
Why *not* give the same amount of time to my LLMD?
On another note... each of the docs I had seen - and there were more than 20 specialists - each and every one of them believed they had the answer.
I wanted to hear that, that they had the answer and could fix the problem.
But none of them succeeded.
Then I learned about Lyme. And read, read, read - wow, it was like reading my life story.
And the best part - when I met my LLMD... she could say, "I don't know."
She did NOT promise me the answers, she did not promise me a cure or symptom-relief.
She was thorough in ways that no other docs had been.
She did not claim to know all the answers, and yet I knew that she would do everything in her power to help.
She listened, she read my history.
Long-term abx offered more hope than any thing else I'd tried.
I read success stories (here), I talked to people.
And suddenly had hope that rather than a life-time of dealing with MS, fibromyalgia, chronic fatigue, and more... maybe I could have a real life again.
The IDSA mindset said that everything I had was "post-Lyme" and I would live with it forever, taking a cocktail of pain meds, sleep meds, stimulants, nerve meds... forever.
And maybe I'd function or maybe I'd stay disabled.
The ILADS mindset suggested that I had chronic infections that had not been adequately treated, and if they were - my life would be normal.
For me, it was a no brainer.
Why *not* try long-term abx, when nothing else had worked???
Now - 5 years later - I am not on abx any longer.
I do not have MS! I do not have fibro. I do not have chronic fatigue. Life is good.
Not sure this answers any of your questions, but maybe it will help a bit.
[ 01-08-2010, 08:45 AM: Message edited by: cactus ]
Posted by cactus (Member # 7347) on :
Oh - I should add that I did not have only Lyme and common co-infections.
I had a multitude of pathogens - including a host of viruses, and many more.
LLMD was the only one to figure out to even test for most of those issues.
Treating all of those issues took quite some time.
[ 01-08-2010, 08:46 AM: Message edited by: cactus ]
Posted by canefan17 (Member # 22149) on :
I've learned to treat myself.
I've found some GREAT information on this website and have used it in my quest for health.
For example: Adrenals.... I had someone on here tell me to fix my adrenal fatigue.
That helped with about 20 symptoms!
The only person that can save you is YOU.
Let the LLMD's guide you... but do your own research and come to own conclusions.
My LLMD recommended I take adrenal glandular tissue (adrenal tissue from animals).
I didn't like the idea so I did some more research and I now natural support my adrenals with vitamins and herbs.
Your LLMD knows a lot more about Lyme than you do... but you know a lot more about your body than he does.
Posted by seekhelp (Member # 15067) on :
Who was your LLMD Cactus? They sound great!
Posted by sutherngrl (Member # 16270) on :
As Seek said, there comes a time when you know you have to do something.
Thats when I hunted down ppl that went to my LLMD and were cured.... or some would say put into remission.
Next I have always taken my husband with me to every appointment. Two heads are better than one when deciding if your doctor is trustworthy.
I actually do believe that for some ppl the 2,3, 5 year plan is reasonable; but others get well sooner.
I did not really have one ounce of improvement until recently; I am 20 months into treatment.
Honestly it was hard not to give up at times; but I didn't like the other alternative, and I'm not a quiter. So I have stuck with it and now feel that I am starting to turn the corner. I have a ways to go, but at least now I think I have a chance.
I think trusting your doctor is VERY important in more ways than one. But believe me I do understand the hesitation.
I think if you rule out "everything else" and Lyme is all thats left, then you just have to go for it. All we can do is try!
Posted by f13girl (Member # 23844) on :
Thanks everyone for the input!
Cactus- How ill did you become during the herx process? Did you get new symptoms that didn't exist before that later resolved ?
Right now my face is numb and never had that before the fagyl/diflucan.....(on nothing now except for supplements/some herbs)
I am no where close to Virgina.. I'm in New England/NH. Wish I were!
Posted by cactus (Member # 7347) on :
f13girl, I was very, very ill. Herxing was horrific.
I did have new symptoms appear that had not existed prior to the herx. (They have resolved.)
I was bed-bound. Even brushing my teeth would wear me out.
Fortunately, my family was very supportive, and at least one member attended every appt - so every one knew what to expect.
When I needed encouragement, they encouraged me.
When it got too tough, they would call the LLMD (or I would) and sometimes LLMD would have me stop all abx for a few days.
But mostly - I pushed through because I wanted to kill the little buggers.
Flagyl is tough. Some people find that tindamax has less side effects - you could consider that.
[ 01-08-2010, 08:47 AM: Message edited by: cactus ]
Posted by Vermont_Lymie (Member # 9780) on :
There is some data out there, and long term abx has been found effective for lyme-TBD treatment for many people.
Though you are right, there is not enough of the peer-reviewed science on this, or else we would never need to waste time with the IDSA's idiots.
Read Cure Unknown, Pam Weintraub's great book on the issue.
Treatment with long-term abx helped me to go from disabled to well; and has done the same for hundreds, probably thousands of others. I hope you can take the leap of faith necessary to get treatment. Healing takes time. Best wishes.
Posted by nspiker (Member # 22824) on :
Cactus....I am envious, but happy you have such a thorough doctor.
Can we hear more about your treatment in regard to peeling away the layers, and what was treated first, and so on?
The reason I ask, is that I was diagnosed with CFS 10 years ago; multiple viruses, EBV, HHV-6, CMV, Coxackie etc. Over the years have been tested for lyme, and it was always negative. The CFS doctor tested for lyme, neurologist when I was having benign faciculations, and most recently with reactive arthritis.
I am Igenex negative, but being treated by an llmd for equivocal babesia, and just finished toxoplasmosis treatment.
I am curious if you were treating bacteria and viruses simultaneously? How was your doctor able to pinpoint so many bacterial infections, and treat them accordingly? I wonder if those of us that are clinically diagnosed with lyme, and have had no tick bite or rash, actually have Bb or just a littany of co-infections that paralyze our immune system.
The best thing about your doctor was that she said she did not have all the answers, and yet would do anything in her power to help.
Your story is inspirational....
Posted by coltman (Member # 21272) on :
quote: How do I build confidence that long term abx is best for my health in the long term?
They are not . ABX have many potentially dangerous side effects. And I am on fence of how much harm they do (from temporary minor effects to permanent debilitating)
Due to other bacteria destruction - we have a lot of bacteira in our body. Some of it is probably harmful, some neutral and some positive. ABX destroy everything indiscriminately.
We been living with bacteria all out through ages- some of that bacteria might as well be symbiotic and if we kill it it could send one in worse state
Plus abx have many non(or poorly) researched interaction (besides actually killing)
So its not easy decision to make. I personally made the decisions to step on this path because alternatives are not looking very attractive
The issue is very complex and I dont believe there are simple answers for it. I am guiding my own treatment that way I know that I am in control and it comforts me. Both success and mistake will be mine
I been weighting my options and
quote: taking a cocktail of pain meds, sleep meds, stimulants, nerve meds... forever.
is not the path I want to go long term. I decided to go for abx because I tolerate drugs and detox relatively well, there is a lot of evidence for them
Not curing long term lyme mind you - I cant even say for sure that we have "chronic lyme" due to spirochette. But in their action against infectious pathogens . I decided there is good chance bacterial infections plays a major factor and chosen the most effective way to attack it based on mainstream research
Who know maybe there are better approaches and maybe I even shooting at wrong target. But that only option I have
Posted by learning721 (Member # 23798) on :
i don't know the answers- but i just wanted to say i know EXACTLY how you feel.
cactus i envy that you had such good family support- a lot of people don't have that- my husband is my only support- though he is great!
He has to split up that time though b/c we have two babies and they have serious needs too-my son 19mths has this and my daughter 9mths- has down syndrome...
is there hope for a family like us? that makes very little money? I have to hope so.
Posted by IckyTicky (Member # 21466) on :
It's going to be trial and error no matter how you go about it. What works for some doesn't work for others. I am positive for Lyme, Mycoplasma, RMSF, West Nile. Probably have Bart too.
Like you, I fell into the chronic neuro category. Muscle twitching, involuntary limb movements, brain fog, nystagmus, internal vibrating,tremor, tingling, muscle and joint pain, myoclonus, the list goes on and on.
I went from being non-functional, laying on the couch dying and in complete dispair two years ago to being functional now. I still have symptoms, but I'm so much better than I was. I've had downfalls, I've had symptoms that went away for months only to return or only to get new ones.
Personally I've been on abx for almost 2 years now pretty much non-stop. It has all been mono therapy at that (yes, my LLMD is an ILADS member)
I know it can be done.. getting better. I was a tough case with Lyme for at LEAST 22 years before being diagnosed. It's painful, there are setbacks and some things won't work. But you can get better I've been on mono abx for 21 months. Just now started a cyst buster (Tindamax) and my LLMD expects that I'll be on abx for another two years and then maintainence abx after that. I trust him because he has treated thousands of patients and has treated me well. He knows that there is no cure all treatment and will try something else when needed.
I also do the natural supplements when I can. Cheap ones like garlic, lemon water, sea salt etc. My husband, three kids and sister also have this disease.. so we have to get by with what we can on a very tight budget.
But you can get better. Know it will take lots of time.. resign yourself to that fact and it makes it easier
![[Smile]](smile.gif)
I've been on mono abx for 21 months. Just now started a cyst buster (Tindamax) and my LLMD expects that I'll be on abx for another two years and then maintainence abx after that.