lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I've tried everything there is that I can try. I've been on every antibiotic, had I.V., flagyl, all babesia medications, and still cannot achieve a good functioning level.
I feel like I can't go on. 7 years of intense treatment....dragging myself around and struggling to take care of my three lyme daughters....
Lately, I've been on low dose Lariam, one half pill. That is all I can tolerate so far.
I'm having severe adverse stuff, like abdominal pain, low back pain, headaches.....cannot separate what is "adverse" and what is a herx.
Just miserable. Anyone suffer a lot on Laria?
I am sooo tired of the fight.
Mary In Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by lymewreck36: I am sooo tired of the fight. Mary In Switzerland [/QB]
So am I, I feel for you so much as no matter what I try nothing works. I honestly wish I had never started treating Lyme as even though before I was diagnosed I was really ill physcially I never suffered mentally - Now I have both.
At the moment I have lost faith in everything and am so confused about what is causing what I feel no hope.
posted
I'm sorry to hear you both feel this way. We've been fighting this so hard for 10 years. The most difficult thing I do each day is watching my 18 and 22 year old sons suffer so much. Our whole family has Lyme & co-infections. My sons developed pseudo-tumor cerebri from untreated infections. The last 6 months has been the hardest for me since they were diagnosed.
BUT, I won't give up, ever! I will take a break and then I'll go back to fighting again.
I met a mom on Caring Bridge whose 11 year old daughter has pseudo-tumor cerebri and Chiari. This girl suffers so much and has had many brain surgeries. This is a quote from the mom:
"My life feels like I'm on Survivor (except for the weight loss). And the thing I have to keep in mind is...this Monster Chiari/Syrinx...blah, blah will not take the fire from my torch! I will not be booted off this island!!! I don't think I will win the million dollars, but I will be one of the last rice starved people standing that I do know!!!"
Please don't give up! Take a break and start fighting again.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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The harder you work the luckier you get! Posts: 965 | From Nebraska Cornhuskers fan in Massachusetts | Registered: Dec 2007
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bettyg
Unregistered
posted
mary and rianna,
i feel your pain, your anger which is just , your fear of ... is there anything left that WILL HELP ME GET INTO REMISSION?
please know there are many of us in your shoes; whether it's a NARROW or SUPER WIDE; we're here for you both and more.
i have not done everything you folks have, but i've had this for 39 yrs; 35 yrs. misdiagnosed by 40-50 drs.
I'M NOT GIVING UP !! my goal has been to get into remission so my hubby of 34 plus years can get to know the REAL ME ... he's NEVER known me healthy!
take time off; read some positive books, and when you are ready ... tackle that sucker full force!
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
So Sorry for everyones suffering. I am sure you have seen this posted before, but after years of different treatments it is the only thing that is getting rid of the infections for me, including bart and babs.
Parasites and Worms play a MAJOR part in Lyme. Burgdorfer found filarial worms in the ticks and as an aside found spirochetes. Check out
I have been doing salt/c (sea salt) for 2 1/2 yrs. Everything in the photos came pouring out of me and many others. I understand some are afraid of the salt/c but it works.
Antiparasitics are another option but you have to be persistent with them as well. I hope this is somewhat helpful,
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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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by bettyg: mary and rianna, i feel your pain, your anger which is just I'M NOT GIVING UP !! my goal has been to get into remission so my hubby of 34 plus years can get to know the REAL ME ... he's NEVER known me healthy!
Bless you betty - that was good for me to read, it made me cry though. Its so tough when you take everything your LLMD says and by goodness do I push the boundaries and follow it exactly, but it just gets too much and too confusing at time . I suppose we all need to get kicked down to get back up again.
So thankyou for helping us when we are down and when we are back up I am sure we will help you guys.
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by zombie_mummy: [QUOTE]Originally posted by steelbone: If you have no fillings time to try the bionic 880 IMO.BUT never give up....
I was going to say the same thing. Since you are in Europe, perhaps you could manage to find a Bionic 880 practitioner nearby?[/QUOTE
Yes we have many practitioners - It would be the very last thing I would ever consider.
you are most welcome! that's what online friends are for too!
here's to better days, months, and years ahead .. we just got to get to the 1st day first!!
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
WEll, Riana, why would the bionic 880 be the last thing you would try? I know nothing about this bionic 880 thing. Some have advised me not to go to one guy in Germany and to go to Brussels, and the cost looks very high.
Salt/vit C.....I tried one day of it once and felt like death, if that is possible, since I feel like I'm at death's door every day.
Riana, and others, I'm sorry to know that I am not alone. Although it is natural that knowing you are not alone is comforting, the knowledge that others live this hell and watch their children suffer is also fills me with sorrow.
I wish we could all meet, maybe once a year, at some hotel, and talk for 24 hours straight to support each other.
I long to meet others with this struggle, just to hang onto to someone that reminds me I am not alienated completely.
I wrote this to a friend recently, when having a particularly difficult night. I had just been to my book club meeting at which we were discussing "To The Lighthouse" by Virginia Wolf.
"Dear xxxxxxx:
That is the description of what life is like with chronic lyme disease, while trying to sustain a social life, an intellectual life, and family.
I don't now remember the reason I started writing this.
Was it...what is bionic 880?
Mary in Switzerland
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Oh, how silly of me. Where the previous reply says "dear xxxxxxx," it should read the following:
"Dear xxxxxxx:
I'm not sure why I am writing. Maybe because I felt like I wasn't coherent at book group today. xxxxxx was too tired to give me my four shots last night (I take four every day in addition to the 15 oral pills I take to stay alive.)
So today, without the usual level of medication coursing through my veins, I was "slipping," and that meant feeling like I couldn't find words, blurry vision, cognitive lapses......
I was conscience of it and hoping no one noticed. So it is bothering me.
And then at book club, xxxxx asked me why I liked the book, and I told her some reasons, and she asked if there were other reasons, and I told her there were some personal ones......and she shifted and motioned that she wanted to know what they were. I don't think you were in the room. Maybe you were.
And I, hesitantly answered, .....that the book has special meaning to me because "I am sick." I could hardly say it. I couldn't look anyone in the face and was biting my lip in an effort not to collapse in a sloppy mass of sobbing Mary. Maybe my face was red. I felt hot. It was sooooo uncomfortable.
When do you let people inside the corners of your mind? How much personally inflicted alienation is necessary to keep people wanting to be around you? When are you giving too much detail and making people uncomfortable? How does one live with it all silently inside your chest?
For me the image of the light house in the book, and the continual pulsing of time towards our fate.....it is uncomfortable. That is because if I had to create an image to portray my existence, it would be like this:
I am running through a dark forest, thick with saplings, vines, and low branches. Spider webs swinging from one branch to another....And there is a wolf chasing me, chasing me with fierce eyes that tell me that he is much stronger than I am, and I am running so fast that the twigs and low branches and saplings and spider webs are smacking across my face as I make haste through the forest, the wolf nipping at my heels, branches scratching my face and perspiration running down my forehead, and the look of terror in my eyes. And the chase continues, every day, every night, day after day, with this slobbering wolf nipping at my heels while I run as fast as I can. And my chest is heaving up and down in the exhausting effort to continue to run everyday, to escape this wolf hot on my heels.
I cannot escape this destiny...this illness, and my mortality is constantly in my forethought. It chases me while I try to find meaning in what has happened to me.
One of the things I had to ask myself when deciding to quit teaching HSK English is what I want the rest of my life to feel like. It is a serious question because "the rest of my life" is certainly not as long as it could have been. So I had to ask myself.....putting everything on the balance, is what I get from teaching HSK worth the toil it requires of me? Is it worth the superhuman strength and GRIT it takes to pull off for me, or would my days be better served finding other small pleasures to bring me meaning?
IN the end the question was moot. My body told me I had to quit, and then I am left to search for the meaning in what was decided for me.
ONe day in late summer/early fall, the AWC had a outing planned, and I attended. That very evening was Bunco at Janet's house, and I was scheduled to attend. I was having a particularly difficult time with pain as I had crashed on a certain medication regimen and was having severe pain as a result. I had taken narcotic pain killers to make it to the outing during the day, but they wore off, and I did not make it home before bunco to fill up again.
I got through bunco, just barely. I tried to hide that my hands were shaking, that I couldn't sit up, or walk. I was sweating profusely. I thought, is it really possible that a person can live this private life inside one's skin, and no one have any clue it is happening? But it is possible Janelle.
Behind my make up and jewelry and smiles, there is the other discourse I have with myself. IT is "the battle." "Get up Mary. You have to get up. Either get up or give in and dig your grave. So get up."
That kind of thing.
Sometimes I think I paint on a smile with my lipstick, and when I am wearing it, I can hide behind it and no one will know.
So this particular evening at bunco, I watched the clock. I counted the buncos. I rolled the dice, and all the while I was waiting for the moment I could make my exit and race home to peel off my clothes and cry on my bed.
On my way to the car after bunco, it occurred to me that I might not be walking in a safe environment, that there were few street lights and not much foot traffic, that there were parked cars along the road that I was walking on and someone could open the car door and pull me in.
So I imagined what that would be like as I walked along...if someone pulled me in a car and put a knife in me. So I did, and I imagined my blood spilling out, and it occurred to me that as the blood exited my body, so would this pain. This pain would spill out all over the streets of Basel, and inside my skin I would finally be pain free.
It is a terrifying thought, but it also comforted me, that one day my life would pass away, and I would be free of this body.
That is why I bit my lip at book club. These private things you cannot say to anybody without making them want to dodge you the next time they see you in public. This is my private life, my dialogue in my head on a minute to minute basis, when I am at a dinner party, a meeting, a card game, or reading a book to my child at night. Always I am alone with this other dialogue.
That is why To The Lighthouse by Virginia Wolf meant something to me. And there was no way to explain that. And it wouldn't be appropriate there to explain that either.
We are all trying to attain something that evades us, be it health, or something else. And there is no escape from our ultimate demise.
So Walid just called. I had a really good cry. That was good for me. Now I can get through the rest of the evening.
So Janelle, I have let you inside my head. I have told you these things, but I will never want to acknowledge them in public or discuss them face to face. It is not possible.
And I am sorry to put you through this email. I can't really say I know why I am sending it. Maybe I wish not to be alone with all these thoughts, at least for the time period of someone reading one email."
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by lymewreck36: I wish we could all meet, maybe once a year, at some hotel, and talk for 24 hours straight to support each other.
Lets go further, I reckon we should all sell up and move into a Lyme Commune Posts: 1172 | From UK | Registered: Jan 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Rianna, Rianna, Rianna....
quote:Yes we have many practitioners - It would be the very last thing I would ever consider.
I am not speaking specifically to the Bionic 880, but are you this set against anything alternative? Synthetic drugs are limited as you can attest too. Much about holistic medicine involves lifestyle changes. Everyone benefits from a healthier lifestyle.
Traditional medicine such as herbs and homeopathy have centuries of experience behind them and were the medicines used before synthetic drugs came into being. The FDA was not required when doctors treated patients this way. Only when synthetic drugs came into being did we suddenly need a government body to oversee and test medicines for safety.
Does England have medical doctors who also practice CAM medicine? These doctors have training in both fields of medicine. They will help you heal your entire body, not just one thing or another.
When I first was diagnosed with lyme, I had horrific mental confusion and migraine headaches. Just 30 days of homeopathy (administered by an anesthesiologist who was also a board certified homeopath) completely cleared my mental issues and they have never returned. That was August 2005.
However, it did not improve my inflammation and joint pain which spread. I sought an ILADS LLMD. He too diagnosed lyme and started me on Ketek and Flagyl. I had an allergic reaction to the flagyl (my throat closed up) and I stopped the Ketek due to fear of the side effects. This doctor did run a rheum test which came back high and he sent me to a rheumatologist who diagnosed RA.
This rheumy, of course, wanted me to start methotrexate. He was angry when I asked for low dose minocycline instead. This is based on the theory of mycoplasma infection causing RA. The doctor refused to test me for mycoplasma or strep...another bacteria implicated in RA, but he did prescribe the mino which at least would not be adverse to the lyme.
I sat out completely on my own trying to find dentists and doctors to help me identify any other possible causes to my RA such as infected teeth, heavy metal toxicity, leaky gut, etc.
I was on my own and very frightened. The RA was so severe I was practically housebound. I could barely move any body part to walk, sit, stand, open doors, etc. I couldn't drive myself and it was scary to feel I was on my own medically.
But I wasn't on my own really. I was praying to God. Very quickly, I landed in the office of the doctor who would save my life. I had met with a biological dentist who was going to remove my last 3 amalgam fillings and he recommended an IV of Vit C which a doctor would have to administer. He sent me to Dr A who is the Dr that saved my life.
That Dr took one look at me and just took charge of me. He ran some bloodwork and after looking at the results said "You are very sick". HA! Understatement there.
Long story short, he focused on detoxification and supplementation to build up my sick, sick body. Within 30 days, I was moving much better. I could now drive myself the 2 1/2 hrs to his office although I had to spend the night each time as I wasn't strong enough to drive down and back.
Within 6 mths, I could make the drive in one day and I was back to work fulltime. Detoxification was what I needed. Not drugs. Not yet.
One year later, the rheumy declared me nearly dormant and in a quiet voice he admitted he didn't understand anything I was doing but it was either working or mother nature had decided to spontaneously heal me. (something that seldom occurs with R.A.)
Now this wonderful doctor did not cure my lyme. He didn't even believe in chasing specific bacteria. He believed in healing the body so the body could fight the diseases.
What he did do was save my life and even give me back my life. It was at the one year mark, I learned of a rheumatologist who specializes in lyme. I started with her and was absolutely stunned and thrilled when I learned she too practices CAM medicine.
She tested me for everything under the sun and she continues to test on a routine basis. I tested positive for H. Pylori, Babesia duncani, Mycoplasma Pneumoniae, Chlamydia Pneumoniae, HHV-6, Q-fever, tapeworm. I have absolutely no problem getting prescripts covered by my insurance.
She started me on a strong antibiotic protocol while keeping up the detoxing that had done so much to help me.
Her approach is kill a little and detox a lot which is essential for me.
We have cleared the H. Pylori and brought the mycoplasma #s way down. I continue to enjoy a mostly painfree life.
Inflammation is behind so many of our symptoms. Inflammation has to be dealt with in order to heal. Bugs, drugs, bad diet and environment all contribute to our inflammation.
Your mental symptoms are inflammation in your brain. The side effect of your medications has to be cleared from your body. Otherwise, they contribute to your inflammation. The bugs have to be killed, albeit slowly, as the die off they release when killed also contributes to your inflammation (hence the herx).
Changing your diet to a more healthy, anti-inflammatory diet will do two things. It will stop inducing inflammation and will help you eliminate inflammation. Not to mention the nutritional benefits.
This is where a CAM doctor is superior to a mainstream doctor.
quote: Lets go further, I reckon we should all sell up and move into a Lyme Commune
Can you imagine all the fights and squabbles we would have?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Riana....lyme commune! Sounds good, but then we'd really be labeled at nuts!
Luvs...can you private message me the name of the rheumy that has worked wonders for you, and location?
What anti-inflammatory diet worked for you, and I believe excess fat contributes to inflammation as well, and I am over weight. Another big issue for me.
Per the letter I included in my previous email, my lyme brain thought I had deleted anyone's name, but on second reading, I see I over looked some names.
Let's say they were changed to protect the innocent?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by luvs2ride: Rianna, Rianna, Rianna....
I am not speaking specifically to the Bionic 880, but are you this set against anything alternative? Luvs [/QUOTE]
Nope not against anything alternative as I do many herbs and alternative therapies. I could not survive without colonics. I do IV Glutathione and DETOX HARD etc and know many alternative therapies work
As you have probably already read and know I am trained in Galvanic, Faradic, Physiostimulation, Mechanical Lymph Drainage, Electrolypolysis and many alternative therapies as that was my field before I was unwell.
I wont get in to a debate regarding the Bionic 880 (again) as many are for this treatment although I would not consider it.
posted
Hi Folks. I've been lurking for a few months, but it's clear to me that I have found my people. I'm sure every newbie who reads these posts for the first time, feels like they've found their long lost friends. Lyme is such a lonesome road- it's so wonderful to know there are people who can cast some light along the path- the treachery becomes a little more navigable. Thanks for that. I'm 45, had the EM rash at 9 in 1974 in CA. 35 years of Lyme- from the time of diagnosis. That realization packs quite a punch. No wonder I'm such a mess and I've had such a battle. How'd I even get here? It's hard to differentiate Lyme from Real Life, at this point, you know? I've been the canvas for Lyme to paint one heck of a crazy picture. I've always felt that there was some force preventing me from getting very far in any endeavor, before I'd fall on my face again. Now I know. I'm a wee 4 months into treatment. Rocephin, Mepron, Azithromycin, Grapefruit seed extract, Artemisium, and a boatload of supplements. As you all know, it's tough. I have tried to maintain a level of fitness in my life, but I feel myself getting weaker and weaker. I gotta hang on to my body! UGG! I'm assuming that I'm gonna be feeling pretty punky for as long as I've got antibiotics killing bugs in my system. Sounds like I may be in for it... After 35 years of infection, what kind of life can even I hope for? My doc won't venture a guess. Treatment is so brutal- I don't think I ever felt so physically ill before. I seem to have my wits about me lately and my mood has been pretty stable, though. So, Hello All. I'm jumping in. I'd like to talk to other folks who have had long time infections.
-------------------- Be Well Posts: 103 | From Out West | Registered: Jan 2009
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Wow Rianna, I had no idea you were into alternatives.
I'm not pursuing the Bionic 880 and wasn't making a pitch for it either. I'm doing too well to consider such an expensive step.
Sorry you aren't having better results.
Lymewreck, I'm in a hurry at the moment but will certainly pm you. She is really good!
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by Rambler: Lyme is such a lonesome road- it's so wonderful to know there are people who can cast some light along the path-I'd like to talk to other folks who have had long time infections.
What a wonderful post - Yes its really tough and treatment is a must just dont forget the DETOX DETOX DETOX.
I have been treating so hard the last few months and the last week has been TERRIBLE but today I did a double colonic YUK and things improved by 50% - so it just shows how necessary detox is. I know this but still it creeps up on me!!!!
I very much believe for some of us the detox pathways are so bad or the infection is so bad that we get overwhelmed.
posted
You can get better, and you will get better as long as you are 100% determined to do it. Keep fighting! If you say your quitting, then you fail, and the Lyme wins. You have a choice, you can fight, or you can sulk and complain about it. Wake up and realize you are still alive, and life is precious. Yes, your sick, but it's temporary and after years on end of suffering you can still get your life back.
My advice...keep fighting!
"The Strongest of Stones" The most beautiful of stones have been tossed by the wind, washed by the waves, and polished to brilliance by life's strongest storms.
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