posted
'Hate to be whining, but I have just had it with this disease!
I have been ill for almost three years straight with not really much improvement at all! In many ways I am worse than when this all started. When this all began, for about six months straight, I was dying (literally) from it...seizures, major life threatening heart arrhythmias to the point of coding in the ER. My main issues are brain-related. I never really had much joint pain or fatigue. I have abnormal EEGs and MRIs. While the cardiac issues seemed to have abated (even before beginning treatment, by the way)I am still VERY ill. I have never really herxed on anything and in many ways I am worse than when this all started. I have felt really sick every single day for what is going on three years! 'Just can't take it anymore.
I am on my third LLMD, tested positive for lyme, bart and babs, have been on numerous oral antibiotics, some IV, supplements and even tried about two months of acupuncture. Nothing, and I mean NOTHING, is working! I dump anywhere between $500-$1000 down the "Lyme toilet" every month, with a kid going off to college next year! Just don't know if any of this is worth it. I guess that I am wrestling with just throwing in the towel on treatment and having the money for my kids, while just waiting to die on the couch. It's just way too difficult getting through each day anymore with not even a glimmer of hope or light at the end of the tunnel.
I guess why I am posting this is that I'm looking for a little hope, that recovery IS indeed possible, even with major brain issues and having been in treatment and really sick for years.
My apologies, again, for posting my complaints here, but as most of you know, I don't really have much of a support system anymore.
Thanks in advance!
~tri
-------------------- ? 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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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Tri - I KNOW how you feel. Have been there many times myself. It can be a very sad, depressing, hopeless place. I have to tell you, my progress has come quickly, and from a direction I never would have guessed.... I finally started to treat parasites in earnest. The amount of progress I have seen since starting (in the last 3 weeks) is huge. Not to mention, I am blown away by what is coming out of me. Most of my vibrations, numbness, tingling, hot sizzling sensation are gone, or greatly diminished.
If you want to know more, read my fairly recent posts. Also read glm1111 posts. This woman has been consistently giving the same message. I wish I had listened sooner. She, an educated woman herself, was sick for 30 years and finally got better after treating parasites. All of her Lyme and co-infection symptoms are gone. Pretty amazing.
I'm coming to believe that parasitic infections are perhaps the primary infection that keeps us sick and unable to get over Lyme and cos. Remember, Willy Bergdorfer found filarial worms in the ticks.
I would make this priority #1. Just my 2 cents...
Hang in there. Hope you find your way. God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
What Tammy said! And Tri, depending on where you are in PA, Tammy and I see a doc who follows Dr. K's protocols, and they really seem to be helping me. PM me if you want any scoop. Hang in!
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
Tri sometimes when you post my heart goes out to you because we have a lot of similarities.
My major symptoms are neuro too, and though some things are improving (just really started treating) I sometimes panic that the cognitive stuff will not get better.
I just want to say please don't give up. You are worth it. I know all the challenges are there. So many challenges. You need to give it your all to get your life back as much as you can. I know it feels like you already have but keep looking forward please.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Tri,
Ditto to what Tammy wrote. I was desperately ill for yrs and with SEVERE neuro symptoms and partail paralysis, many visits to ICU etc.
What turned the corner for me was treating for parasites. Many of these ticks are carrying the Filarial Worm co-infection.
This is what came pouring out of me after six mos of antiparasitic herbs and the salt/c protocol.
I am starting to believe that those chronically ill are carrying this infection, ands it is being unrecognized even by LLMDs.
PLEASE don't give up and consider taking this approach. Google parasite symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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A few questions for those of you that got better with the anti-parasitics...
1. Are you 100% well?
2. Did you have major brain involvement (i.e. severe cognitive dysfunction, the feeling of hearing radio static in your head, brain shocks at night while trying to fall asleep, seizures, etc.) and, if so, did it all resolve?
3. Was your anti-parasitic treatment the Salt/C protocol, or was it other stuff as well?
Thanks!
-------------------- ? 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
Unlike Tammy, who has apparently done heavier-hitting anti-parasitics, I've only done Salt/C, Humaworm and Alinia. But they all seemed to help.
Like you, I had horrible neuro symptoms - everything you list except the seizures - and after 3.5 years of treatment, all that is gone. I did 2.5 years of antibiotics, antifungals and antimalarials, but I always added in what I could from Dr. K's protocols (KPU, rizols, rechts regulat, biofilm busters, microsilica, etc). Now, as I said above, I actually see a Dr. K practitioner who uses ART to figure out what I need, and I'm on the Dr. K cocktail, among other things. But all my neuro symptoms are gone, and I'm back to being able to train and race again (running) and live a normal life.
-------------------- Increasingly ill over past 10 yrs; treating since October '08. Posts: 180 | From Philadelphia, PA | Registered: Oct 2008
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posted
There is Hope!! I was diagnosed with Lyme and Co. 5 years ago this week and treated very agressively until December 2012. I had severe neurlogical issues,brain fog,cognitive problems,extreme nerve pain,headaches and more every day for years! I tried orals,IV Rocephin,more orals,8 months of IM Bicillin,Mepron,Malarone,etc.etc. Last year at this time I just about gave up hope of ever getting my life back. I was sooooo sick and couldn't even remember what it felt like to feel "normal".
Well I just told my husband that I have felt the best I have felt since this whole hellish nightmare began. I would say 90% on most days. I NEVER thought I would feel this good again!
I feel that most of my symptoms now are from the fact that my body got so out of shape throughout the 5 years of battling Lyme when I couldn't even get out of bed on most days.
So PLEASE DON'T GIVE UP!! And make sure you have tried everything!
Posts: 256 | From long island, new york | Registered: Feb 2008
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posted
It will be 20 years this September since I first started this ride.
Garlic helps more than anything else at this point. Everything else adds up, don't get me wrong, but the garlic by itself is worth the supplements, the abx, etc.
Working in the heat absolutely sucks. One day, 4 hours work to replace a few body panels on my wife's car wiped me out for almost 5 days due to the herx, but I felt better after I recovered. Heat should be prescribed.
I had the Lyme at bay for around 10 years, popped back up around three years ago. It still sucks, but my absolute worst days now are on par with my best two years ago.
Just keep at it.
-------------------- Ticks suck. Posts: 140 | From Alabama | Registered: Aug 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I've had the worst 2 1/2 years of my life, but u have to keep goin. I loved my life, I'm not dead, though I feel it, but my son is 17 and I have a husband trying or me to get better. I know how frustrating and discouraging every day is, but I'm working on it. That's all we can do is try. I knw what life is like, smelled it, loved it, it can't be gone this way. Keep goin when you think you can't. It hurts everyday not to be able to think like I usually do, it's part of this. Your thoughts are not your heart. God knows that. I'm ending Iv Wednesday after 3 picc lines. Went through the illness and death of my dad, in the hospital time after time for salt, but I'm still breathing. I tell god I don't want to live if it's without feeling, but it's come back before, somewhere it'll come back again. It's so hard, but we weren't put on this earth to be or tortured, there is goodness. God bless, hold on. Read the others who almost wanted to give up. I'm one, but tomorrow's another chance to be better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Tri, have you checked into mold? I met someone who thought she had lyme and company but just kept deteriorating. She never herxed either. It turned out her problem was mold. She had to move.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Giving up is not an option. Antibiotics are not the only way to treat this illness. I was very much like you 8 years ago. It took 3 years of steady treatment to feel slightly better. At about the time I began to get a little relief, my daughter was killed in a car accident. As you can imagine, this set me back and after starting again, and seeing a total of 5 LLMD's, today I can say that while I am not cured, I function, do my own shopping, cooking, some cleaning. Rife seemed to be the answer for me.
Have you considered rife, salt/c, Buhners herbs, etc. It seems to me that you have many other options.
I noticed in one of your earlier posts you asked someone if they were 100% cured after treating for parasites. It would be much easier for you if you would accept that many of us do not return to 100%. We do get better, but likely you will not return to where you were before this started.
Hang in there. DO not consider giving up. Keep fighting. You can do this. Just take a deep breath and consider other options. There are many and you just haven't found what works for you yet.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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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
Hi there. You DO have hope! I havent been on this site in a long time but that's only because I was HEALED of very advanced Lyme and Co. about a year ago. I don't know where you are in your faith, but if you are a believer, cling to HIs promises. I was healed at the brink of death after sufferring for over 15 years. I treated my lyme aggressively for 2 years. God has a plan for you. I know you're probably rolling your eyes as you read this, but its true. Whether or not you embrace it, your future is already planned out. ?You need to get to the soul of your recovery and find that strength to face it head on. I know it sucks. I had seizures, RSD, pain from hell, neuro issues you would not believe....I've been there. Houndreds of thousands of dollars gone, bankruptcy, missing 5 years of my babies' lives and suicidal. I know where you're at. And it absolutely tears my heart out remembering my struggle and validated yours. But YOU HAVE TO FIGHT. Find A reason to fight. Who cares if you're on the couch. I lived on the couch for years. But I LIVED! Refocus, set your sights on the great things and fight on! May God bless you!
-------------------- Blessings to you! Posts: 141 | From Southern California | Registered: Mar 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wondering about killing off parasites myself.
I thought I had done that. I did try the sea salt and vit c
But, don't know how long I tried it or how much sea salt to take or vit c which products.
Death does seem like the only option at times for me....especially when I am going thru whatever is going on in my brain that is unbearable.
That is the worse symptom.
Life seems more do able once that lets up.
I have read about others who have gotten their health back.
It seems that finding the right road and resources is tricky.
Also finding a reason to fight the good fight.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I keep thinking that having a place people with lyme can go to for help would help.
A healing ranch kind of thing.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Agreed, kam!'Would have to be free though, as most of us are broke (or rapidly getting there!) with LLMD fees and treatment modalities!
-------------------- ? 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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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I have been at this for about 10 years.
I underwent spinal cord surgery and back of skull/brain surgery for a condition that mimicks lyme disease.I thought I was lyme free when I had the surgeries and that this other neurological condition was the cause of all my symptoms.
I was wrong - they were wrong and TBI's took hold again.
I use to be a triathlete and professional duathlete. I dabble here and there when I am on an upswing but the upswings only cause me to crash.
I have been cut open literally because of lyme and placed on a half a year of steriods for complications from brain surgery. Two years later I am back in tx for TBI's. I have had days where I do quit - I say I am done. But that does not last long because my life instinct is still intact and I will keep fighting.
I hit rock bottom after my surgeries and still get pushed down to the bottom but have had weeks of feeling normal again - that is what gives me hope.
I feel fortunate in that I do have some good days/weeks even months which I can draw upon in my darkest moments when I want to give up. I feel for those who do not have those moments of what it feels like to feel normal.
Sorry you are having such a rough go at it.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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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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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
tri,
Have you looked into treating parasites as mentioned by myself and several others above?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Well, I hit bottom in 2001 and was diagnosed with Chronic Fatigue Syndrom, and that is no man's land. Believe me, Lyme is not respected, but at least people have heard of it. CFS is the bottom of pit if you are seeking emotional support.
I've lost a lot, as so many of us have. The suffering is unbelieveable, but now that I realize that my sysmptoms are at least partially being caused by tick infection, I've have had something to work with.
When I started getting the inflammation down in my brain and nervous system through herbs, I really began to see an improvement, which gave me hope. I'm taking antibiotics now with herbs and have improved to some degree. I don't know how much I will heal.
But, I've come to believe that much of the suffering with these illnesses are due to inflammation in the brain, nervous system, and body. Without so much inflammation, you can have a better frame of mind and feel better. So that may be a place to start for you.
Also the salt/c and parasite herbs may help. I'm having difficulty with acid reflux with these.
There are ways to improve. Don't give up.
P.S. You may not need to spend so much money if you do the herbal route. Just a thought.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
Well...I have been on this forum for almost three years now...sick for 3.5 years and in treatment for 3.
Other than a select few that keep, thankfully, coming back to give all of us hope, it seems like no one really gets better from all of this. It seems like a few more have waxing and waning of symptoms...perhaps a little improvement, then a little backsliding...or even perhaps "remission", only to come back to post another question about being ill, yet again.
I have been to three different LLMDs in two different states outside of the one that I live in (and now even with the heavy hitter in NY), been on multiple numerous orals and supplements and have had two picc lines with having tried three different IV antibiotics as well as IV glutathione!
I don't mean to be Debbie Downer, but I am pouring SO much money into this (and I even have GOOD insurance!)...probably close to $1,000 out of pocket every month, with nothing that really helps...I wax and wane with symptoms and their severity, but cannot break through with any improvement what-so-ever with any of my brain/neuro issues (I never really had much joint pain or fatigue, btw). 'Starting to think that it is going to be one of those "you just have to live with it" things and that I now have permanent damage that will not ever repair.
Just getting ready to throw in the towel on all treatments and let the chips fall where they may, if you will. I have a kid in college and two more still at home and just keep throwing money away and, quite honestly, there is not much more left to throw.
Just venting, I suppose...and pondering what to do....
My apologies, again, for my negativity...but it seems to be more reality than true negativity.
Ugh...
-------------------- ? 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
Just out of curiosity, why was this moved and by whom to general support? There was medical stuff in here as well...
And...usually when threads/posts are reclassified, there is a post stating so...???
Oh well...
Perhaps I should change the title?
-------------------- ? 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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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Has your llmd mentioned treating for parasites? I think they are not crazy about treating for parasites without some type of positive test..... They talk about them a lot though.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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