posted
triathletelymie, some of my neuro symptoms lifted after 8 months of treatment. My most persistent symptom was physiological dysfunction and I don't know if that was neurological or not. But it only began to improve after 2 years and 4 months of treatment. Before then I noticed no improvement at all. I just kept holding on to the vision of being well. I am not there yet, but it finally seems possible. Stay resolute.
Posts: 41 | From Victoria, BC Canada | Registered: Jul 2009
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posted
The CPN was PCR. The specialty lab is Viral Immune Pathologies. They test intracellular bacteria and viruses.
Anyone who is not getting better, or even if you are, research Prof. Garth L. Nicholson. He is a microbiologist and researcher, as well as his wife.
He had a daughter in the Gulf War who came back very sick, like many of the other Gulf War Vets.
He had a research lab at his disposal and set out to find out what was wrong with his daughter. She had a mycoplasma infection, intracellular like chlamydia pneumoniae. So no regular bloodwork can detect it. That is what all of the Gulf War Vets are suffering from.
He has authored much on the topic of these intracellular infections causing all of the horrible diseases people are suffering from today, MS, ALS, chronic fatigue, fibromyalgia, the list goes on and on.
Beware looking at his work as often you will get a pop-up asking if you trust this website, if not don't open it. I opened them all, always, and eventually my computer was infected with millions of viruses. It cost me over $200. to get it fixed.
If I can help anyone, I will be glad to. So glad I found this forum. It is wonderful.
Posts: 44 | From New York | Registered: Feb 2011
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posted
thanks suzy. I tested positive for cpn through labcorp antibodies. after 3 months of doxy and 3 months of levaquin, id like to test it again. I know prof Nicholson recommends testing via PCR through VIP, but I think this is less sensitive than antibodies (although a positive PCR means more than a positive antibodies).
-------------------- We will win Posts: 135 | From California | Registered: Jul 2010
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posted
I started treatment immediately after infection and it has taken almost three years to get to the point where I finally feel human again. I had severe neurological involvement. I remember the first glimmers of hope would be snuffed out by the never ending pain of this illness and I would have loved to just slip away but the love of my life kept a firm grip on me and grounded me as he watched me pour the $$$$ into the black hole. I'm sure that some of it was wasted but have no way of knowing what part was unnecessary. A trusted LLMD was essential and he told me from the start (after 8 months of treating with someone else) to allow at least 2 years to see results. I am currently off of ABX and am trying Banderol and Samento along with all my other support stuff. I may need to try pulsing ABX to keep the bacteria at bay and I am willing to do that forever if I have to to keep my brain working. I FEEL GREAT---- IT IS POSSIBLE--- HANG IN THERE!
Posts: 27 | From SW VA | Registered: Aug 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
That's great utz.
I'm still treating, but am in the 90%'s most days. My brain is back, depersonalization and brain fog are gone, my brain is healing per my now Normal MRI.
Still have some mild symptoms I'm dealing with...but I can function, have fun, laugh, enjoy life, work, travel, be a father, husband, and otherwise live (except for taking 40 pills a day and having a lyme diet.)
Bcb
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
Wow, utz! Thanks so much! I needed to read your post today.
It is just so incredibly frustrating, depressing and seemingly ENDLESS!!!!!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Tri, While my symptoms are different from yours, I am also not very hopeful that I will ever return to my pre-Lyme state. I seem to have plateaued and seem to be cycling through various symptoms - When one symptom stops, another seems to take its place.
Very frustrating, I agree.
Posts: 100 | From USA | Registered: Sep 2010
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posted
I'll throw my hat into the ring... I am improving a lot--four years in best I know...still got a way to go
but it is so different when you can stabilize your mind and emotions and sustain improvements.
Maybe not measured day by day but over the long haul.
when mind and emotions were under full scale assualt I felt depersonalized. derealized and afloat in a never ending nightmare.
a combo of what others have said.
I got better for two years slowly (neuro - I was paralyzed waistdown and lost most bowel
and bladder control back then; legs still tingle and inflame and have numb patches but that's "all" on that.) I survived the onslaught of IV steroids at the get go...for the mystery symptoms.
then in the third year I got way way worse in different ways...same reason as others..undiagnosed coinfections came to foreground as lyme receded.
but I had already been detoxing and using Samento, Burbour and Cumanda, a slew of supplements, electrodermal testing and homeopathics.
third year was mentally and emotionally worse...bart/babs unbeknownst to me.
got a second bite/round of infections. found lymenet and found LLND
Now I am in fourth year and better than 2007! I really feel my mind, my hearing, my energy, a sense of hope and future coming back.
Acute symptoms are simmering down...herxing cycles are not as bad...I even had a few weeks that besides the remnant of the neuro in my legs and some anxiety ...felt almost normal...
I despaired of all that until about a month ago when the improvement sustained even through some mild herxing. My mind began clearing, memory
resturning, emotions climbing out of pits as the infections are being beat back. Abx, herbals, supplements, detox, EDT,
homeopathics, diet and so on...hammering from different directions and changing it up. Prayers.
Seriously wanted to die a year back. Could not see past the fog of the day, moment by moment. hope trickled away.
My short term memory and word retrieval was bad and I depend on my mind more than my body in many ways for work.
As for the is it financially worth it during the times you cannot see where it is going?
Resounding yes. Can you always tell whcih is the most cost to benefit in the things you try? No. Each thing I have found does something.
This disease out of pocket has cost tens of thousands and I have a modest income. No insurance...gave it up to pay for treatment.
I gutted savings, friends helped some, family helped some and somehow the boat is still afloat
even through times I did not know how to pay to keep the roof over my head that month and my car dying.
nightmare...worse than some and not as bad by far as others...
I do have to give credit to faith in God...except that as a resource got eaten away as my mental status slid into a pit. then it was just guilt all the time. Doom scenarios playing in the head.
but still all that is to say yes it is worth it in the frustrating periods...
to do what is in your power to do...and trust for things not within your power.
I do not mean passive trust although when your fatigue is a crushing ball and chain it feels
pretty passive even though there is a royal fight going on to stay in the game somewhere inside...
...these diseases bring you low...and it is a moment by moment fight to make it sometimes..no doubt...
but I have read many folks on here who are feeling improvement.
And DBergy said it well...often you feel "not part" as you feel much better and so those voices don't stick around.
while I would like to think I will give back,I try to do that now as I go...
I also look to a time when my life is not totally about lyme day by day.
we are changed by it..I agree. But we survive and live--to live our unique
lives...and I have other hopes (now returning when I truly thought that capacity was permanently gone)
for the remainder of my life besides being about lyme the rest of my life...even if I have to pay more attention to stay well. that's ok...to say the least.
I may have something different to say a month from now or a year but right now i can say that because I am that much better.
Learning to live in the now for better and worse...not in a future that has not yet arrived with whatever...nor in the past...
hard...but the lyme factor has required that of me.
sorry i am long winded.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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lymeboy
Unregistered
posted
It has been a year and 2 months since I got diagnosed. I started an IV just about a year ago to the day. after IV I did IM. I felt for a while that I wasn't getting anywhere. I would Herx, and then be completely bedridden for a week. the herxes kept getting worse. I started treating for Bart in November. 3 weeks later I actually felt huge improvements. I had never been suicidal until all of these symptoms hit. The Bart really crushed my brain. It was almost like someone hit a switch. Now I am at the point of having more good days than bad. I have days where I feel 85-90%. I can't even believe how far I have come. But it has taken a year. And it will likely be another year or two. I'm guessing you're a Triathlete, so a good way to think of this treatment is a marathon. Not a sprint, or even a run. This is a long haul and it's gonna be filled with a lot of setbacks and disappointments. Someone on this board said this to me last year when I came here asking the same question and it really helped put things in perspective. It sucks. I hate it. But it isn't going to leave easy. we have to be diligent and disciplined and keep our heads up, even when our insides are begging us to quit. That is the disease talking, it's completely messed up and I never could have imagined a sickness like this.
I do believe I will beat it. I didn't 3 months ago. I will probably backslide a little, but I'm going to win in the end. You will too.
You could try changing docs, or if you have changed too many times, try sticking with one guy for a year. Or perhaps find a doc who has cured plenty of folks and go there. Just don't give up. That isn't you talking it is the disease. It's exhausting. Hang in there.
oh yes and if you haven't hit Bart or Babesia it could be time.
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My 5yo son is well after 2 years of treatment. He was initially only diagnosed with Lyme, and once we treated Babs and Bart, he started to improve.
Finally got to the lyme too, and used many meds... I strongly believe diet and nutrition were an important part of the equation. Sugar, and white refined foods feed the bad, please be sure you are eating whole foods, and lots of fruits/veggies...
We use a whole food supplement in capsule form called Juice Plus which gives us 17 different fruits and veggies a day along with the vineyard option which includes 8 grapes and berries. It's tested and approved by the NSF which regulates what professional athletes can take, testing for over 300 known contaminates so only the best nutritents get in you...
Good luck with your journey, I believe it can be done based on our own experience. My now 3yo is currently awaiting labwork b/c of a recent tick bite, and symptoms...so we may be back at it too.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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posted
Tri and everyone here...it is the struggle of and for our lives...no matter what age you are it is worth it to try new treatments/ protocols until you find sthg that works...and when that stops working...look for sthg else...I had had it with ABX after 2 years of various oral combos...I thought they were killing me and since I have stopped...3 months ago ...I feel so much better...my body no longer "screams" at me...no more herxes to deal with...I couldn't bear another one...so I guess I am one of those that does not tolerate ABX well...I felt lost and confused as to where to go next but after reading a lot I decided I wanted to try Dr. Klinghardt's protocol and so found ( thanks to folks here ) a practitioner who follows his protocol...I am a little rocky at this point in time ( must figure out why) but in general I feel better than I have in years and years of ABX and before when I had no idea why I was so sick...I am combining herbal supplements with a gluten free , dairy free diet and no sugars ( well...doing the best I can... ) some major detox and clearing my home of all offensive materials...all my aluminum pots and pans have been thrown out...I won't give them away since I don't want anyone else to use them ! I threw away all cosmetics and deoderants that contain aluminum and petroleum based ingredients...plastics...lots of them but not all...mostly utensils that come in contact with heat as that releases the PCP's etc...I don't use my microwave anymore and will give it away soon...I bought a reverse osmosis water filtration system to erradicate heavy metals in my drinking water...I will not go to a hair or nail salon anymore and subject myself to the chemicals in the hair dyes etc...this all may sound crazy but I really think these things add to the toxity load in our bodies and when we are fighting already an army of bugs it just adds extra work for our kidneys and liver etc to deal with, especially since I am detoxing too...why would I then resubject myself to more toxins...the only thing I am on the fence about is removing my silver amalgams...the removal sounds scarier than leaving them be ...I just don't know if I am healthy and strong enough to go through that at this point in time...only 1 month ago I thought I was dying...really...no drama here...and now I feel hopeful that by continuing to " clean up my act" along with the detox and natural bug killing I may indeed beat these darn bugs...I am willing to try almost anything to get well...but I think you need to give any treatment program enough time to let it work...a year at minimum I would say...well unless you have a major negative reaction to sthg...I agree with whoever said above that "one size does not fit all"...I am learning that is especially true with lyme and you must listen to your body and follow what ever course seems right for you...I am not against going back on ABX if I feel they become necessary but I am so glad to be off them at the moment...to each their own...I must say though...that without the help and support here on lymenet I could not have made it this far and I am so grateful for everyone here that so willingly give their time to help others...I hope I can do the same...keep up hope...there will be bad days and good days ...and the good days will increase once you find the right treatment path for you...our collective exoerience here we could turn into a lyme "Bible" ! Good luck and keep on trucking ! As Miss Clairol says,,," we're worth it " !...
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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posted
I was treated for Lyme, bart, babs, heavy metal...I went through a nightmare couple of years, and emerged improved a lot, was on a steady plateau for a while, and then started to head downhill a few months ago.
I've always thought I was eating gluten free, but lately found out I have to be much more diligent (1). My doctor upped my thyroid dose(2), and put me on an anti-Candida treatment(3). I got more strict with the sugar (I have to stay REAL LOW carb-4). So, it was those 4 tweaks I just mentioned that turned me around, and I'm getting better just as fast as I was going downhill before.
I've had Lyme much longer than 30 years. I feel I'm getting close to being symptom free except for fatigue and a sleep disorder. Recently, research using proteins in the spinal fluid have shown that Lyme and CFS are 2 different problems, and I've been diagnosed with both (& FM of course). So, I wonder if what's left is something other than Lyme. Or, since I've been infected for so long, maybe there's permanent damage.
I would say that if I were to stop progressing and stay at this point, all the pain, hassle, misery, and money has been worth it.
Instead of being dead about 4 years ago, now I'm still a "sickie" but can have fun, and am improving, being a useful human being, with more ups than downs. "It's not the best restaurant in town, but I'm hungry!"
I shudder to think of going through the early part of treatment again, but I would to get back to this point. I really feel I'll get much better now, and who knows? Maybe I'll be on maintenance, which looks like remission, but with the mountain of supplements and herbs to keep bolstered.
I guess my point is agreeing with all those who have said if you're not improving, start looking at other things that could be going on. And NEVER give up! Please. Posts: 563 | From New Mexico, USA | Registered: May 2007
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I don't have the answer to the question...I think there are people who walk away well.
It is so hard to know what works, for sure though...especially those of you who have been doing treatments for many years...(my daughter is well over a decade on treatment now, and she has probably done it all throughout that time.
And, like most here, tens of thousands of dollars spent to date.
But, these days things are much different for my daughter...she is better than she has ever been since she got sick.
So, it begs the question...what worked? I don't know...I just know, that what she is doing now has helped her improve immensely, but who is to know whether each step taken these past eleven years was somehow a culmination of all things done to get her to this point? Mind blowing if that is the case...
It has been one heck of a ride...one that both of us wished we could of gotten off of a long time ago.
Be hopeful...I never thought I would hear my daughter say, "I feel great!" ever again, but she did say just that yesterday.
Will there be bumps in the road in the future?...I don't know, maybe, but I have now seen that there is health where only sickness resided, so no matter what, if things did indeed go bad, I know she could get well again...this I am certain of.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I thought they did....I thought I did. But, I am back here again. And with every relapse and every cycle within that relapse...I die a little more.
Never thought I'd give up...couldn't understand anyone who would....but it is tougher every day for me.
You can see by my member number how long I have been fighting this. When I thought I truly won in 2004/2005, I rarely visited here even to read. I'm not much of a poster as you can see. But since 2007 it has been a slow decent to hell.
Sorry to be so glum, but that's how it feels right now.
Posts: 101 | From MS | Registered: Feb 2001
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posted
Tri- Another thought...What makes it so hard is that is seems for so many of us, our pre-days were so vibrant and full of life. It seems there are so many of us that were classic type "A", athletic, social, multitasking, go to if you wanted it done (and done right) kind of people.
Sometimes I wish I didn't remember who I was before!
Posts: 101 | From MS | Registered: Feb 2001
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chiquita incognita
Unregistered
posted
Good point Missy. Someone pointed out to me not to compare. That can be tough, but if we work at it and just accept where it's at, maybe we will be all the better off. Zen and the art of the Now, if you know what I mean.
Best wishes, CI ps easier said than done, I won't pretend otherwise.
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I agree, it does seem like those of us who are hit the hardest were the ones who were goinggoinggoing before we got sick, OR the ones who have simply been sick forever.
I think that in fact you can heal. Will we ever be the same? Probably not. How can you be when you go through something like this?
I feel like I have come to a turning point finally. Like others, I have found that me and abx simpy are not friends. I feel toxic and poisoned no matter how crazy I am about detoxing. For me the actual turning point was quitting all meds and taking a 2 week break from everything then taking a low-and-slow approach.
I also have started dealing with my 'systems' as I feel like I can't progress any further unless I repair some of the other damage. All the abx in the world aren't going to fix my gut, repair my thyroid/endocrine system/immune system. So, that is my focus now, taking LOW doses of supplements and working up slowly.
I am changing my diet, have been able to start running again and I also take LDN.
I know I will need to treat for Lyme again, as I know I am not cured, but I truly feel that strengthening my systems will help me to tolerate the Lyme treatment better...which in the future will be herbs.
Based on how I feel right now, I believe I have made the right choice. Felt like death on abx despite daily detoxing(sweating, epsom salt baths, coffee enemas, charcoal, chlorella, etc)feel HUMAN now, able to do things with my family, run, participate in life and I am not glued to the couch.
For me, abx would have killed me. I just can't buy into feeling THAT bad, and expecting to get better. When I think of the stress it puts on your system to be THAT sick on top of being sick...it just makes me really wonder about the treatment protocols. I know Dr's do the best they can and they *think* balls-to-the-wall with abx is often the way to go(or heavy herbal/supp. protocols) but...gah, it just feels so wrong when I look at or read how much people are suffering...and for YEARS.
I don't know. I only know what works/is working for me. YMMV.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Raw, you are soooo right!!! Did you notice any significant progress from LDN?
Posts: 723 | From Montreal | Registered: Oct 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Raw...what you wrote is something I would have to agree with...my daughter does not tolerate abx any more and you know something?....I am totally okay with that. From what I have observed in my daughter this past decade, I don't think abx is the end-all treatment for Lyme, perhaps unless you are in the very early stages.
My daughter's doctors realize too, that you have to give your body the tools to help eradicate the bb or else it will be a loosing battle...and that is just where she is at these days...taking the back-door approach for the lack of a better term.
Is she better?...very much so...has she finished the race?...not yet, but close, I pray.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I'm back to living life, so I don't post much. I owe my health to God and the Erchonia Cold Laser. Look up member name Ocean and her posts on the laser - She is back to living life as well.
Posts: 262 | From ohio | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I thought Ocean had a relapse lately. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I have to say I notice *something* from the LDN...but it is hard to describe. I know that my immune system is starting to 'reorganize' as I am feeling different, in a good way. Not as foggy, not as tired, but it was not an overnight fix. I have been on it 3 mo. and am just starting to notice a change.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Even if I am cured in the future, I will never, mentally, be the same. This experience has changed my life so much.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Yes, Seek she has, BUT nothing the laser can't fix relatively easy. Considering everything she has been thru...Even someone who had never had Lyme would have struggled emotionally and physically. She is one strong woman!!!
Posts: 262 | From ohio | Registered: Jul 2008
| IP: Logged |
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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) some major detox and clearing my home of all offensive materials...all my aluminum pots and pans have been thrown out...I won't give them away since I don't want anyone else to use them ! I threw away all cosmetics and deoderants that contain aluminum and petroleum based ingredients...plastics...lots of them but not all...mostly utensils that come in contact with heat as that releases the PCP's etc...I don't use my microwave anymore and will give it away soon...I bought a reverse osmosis water filtration system to erradicate heavy metals in my drinking water...I will not go to a hair or nail salon anymore and subject myself to the chemicals in the hair dyes etc...this all may sound crazy but I really think these things add to the toxity load in our bodies and when we are fighting already an army of bugs it just adds extra work for our kidneys and liver etc to deal with, especially since I am detoxing too...why would I then resubject myself to more toxins...the only thing I am on the fence about is removing my silver amalgams...the removal sounds scarier than leaving them be ...I just don't know if I am healthy and strong enough to go through that at this point in time...only 1 month ago I thought I was dying...really...no drama here...and now I feel hopeful that by continuing to " clean up my act" along with the detox and natural bug killing I may indeed beat these darn bugs...I am willing to try almost anything to get well...but I think you need to give any treatment program enough time to let it work...a year at minimum I would say...well unless you have a major negative reaction to sthg...I agree with whoever said above that "one size does not fit all"...I am learning that is especially true with lyme and you must listen to your body and follow what ever course seems right for you...I am not against going back on ABX if I feel they become necessary but I am so glad to be off them at the moment...to each their own...I must say though...that without the help and support here on lymenet I could not have made it this far and I am so grateful for everyone here that so willingly give their time to help others...I hope I can do the same...keep up hope...there will be bad days and good days ...and the good days will increase once you find the right treatment path for you...our collective exoerience here we could turn into a lyme "Bible" !
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