Topic: some thought to newbies and others about getting better
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
to newbies and many others undergoing treatment
so here is the jist of what is important. having lyme is like having leprosy used to be,however leprosy can now be cured. people are afraid of sick people, hence the old quarantine camps for tb. people in todays world, for the most part , care about one thing, themselves. this is duly noted by the corruption and greed in our present economy.
for this observation of society, the number one most important person with lyme is yourself. you must have belief that it can be cured, but it can only be cured with certain means that you control nobody else can or will help. Some spouses leave, some have apathy, some have empathy. Children have their own problems in this crazy world we left them. friends don't want to be friends to sick people. After 16 years of struggling with lyme and babs, all i can say is,you can't leave anything about your lyme to others, help hopefully, love maybe, but people in todays society are cruel. You must not waste your energy on fighting or convincing people you are sick. you must focus your energy into getting better. this means very very baby steps per day. keep a diary, there is one on line don't remember the name. do not spend what precious energy you have in a negative way. always think positive. think that you will get better. think that you will walk again. it can be done,i have done it and many that know me can vouch for how depressed i was 2 years ago when i was getting sick again. i did fight it, it was not easy, it did require meds,psych meds, counseling, and extreme focus to get better.. i know this is only temporary, but i live every day to its fullest, while i am healthy.
treatment of lyme is not just with pills or herbs, you must control the health of your own body.
this means that emotional stress, physical stress, mental stress and a lack of healthy body in these areas means will be your downfall to full treatment.
the body and mind must be healthy for the success of treatment.
first physical. exercise is probably the number one means that you have control over, that will help you. exercise produces endorphins and norepinephrine release in the brain. these chemicals increase the bodies resistance to bugs and increases the bodies immune system. this sounds good in theory but many here can hardly walk, as i was 3 years ago. there is warm water therapy, most ymcas have a special pool for this. this is where i started. from bed to wheelchair to pool and back to bed 3 days a week to start.insurance will cover this is physical therapy is prescribed. after many months, i was able to go to a real pool, real exercises and lots of bed rest.
this slowly over 6 months went to small weights, bike riding and more pool. i now after 7 years of treatment and 7 years undx can play tennis and exercise every day. this was the most difficult thing that i have ever done in my life.
mental wellness is also important as depression changes our chemistry in the brain. depression causes changes in serotonin uptake in the brain. this depression is cyclic and can get deeper and deeper.many times this depression becomes chemical and can only be treated with medications. without a healthy mind and body the immune system is reduced and the body is just the perfect host for bugs of all kinds
just a note for some of you newbies that are only worried about abx and drugs. also quick note, abx tx should be followed up by antivirals and antifungals to clean the system from overgrowths of these due to long term abx. docdave
[ 24. December 2008, 11:36 PM: Message edited by: stymielymie ]
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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truly do appreciate your effort and genuine help...
sadly there are thousands of us here and millions offline who do have this horrible lyme disease and coinfections that come as a package deal,
many many many who are totally new to all this here, still are learning the sad realities of this disease and the unfortunate denials and lack of understanding by those who are not infected with it or affected by it.,
and as i clearly see that for each person, each case usually differs as well as their symptoms and treatments.
i on the other hand am just one trying to hopefully get just one step ahead of the game,
and ask all that i can ask, and to learn as much as i can, in hopes of power and education,
and to educate all those who don't know and don't get online as we do or even come here to this web site for support.
i personally know many stories of people, and friends and family, who have been bitten by a tick, or who had a mysterious bulls-eye rash from a fishing or camping trip, or even in their very own back yard, or many others who show to have clear symptoms of lyme, or many of those who go misdiagnosed by their doctors for some other mysterious illnesses,
they all sadly do not know the truth behind lyme disease and coinfections and the true course of testing and treatments which are required.
most peolle dont even know what LLMD even is.
and sadly they either lack the knowledge and/or are simply in denial of lyme & co.
and based on the basic 2 or 3 week treatment protocols that they have had been prescribed to them by their so called doctors,
most doont even know that they probably still are infected and are truly sick and with time and age may and will get worse, perhaps their symptoms temporarily went away or they just feel a bit better, or even worse as they are simply being brainwashed by our governed medical community and our government with just a few weeks of basic antibitotics.
unfortunately most of those people never even get retested, or even go back to see their doctors after the rash goes away...
i promise to do my part and to help those who need it at their time of need as time will come...
i only hope that one day there truly will be a genuine cure and not just lyme politics and assumptions.
i am very glad to know that you are doing much better especially after hearing your story you have written to me in the past.
happy holidays to you and your family.
best regards.
[ 24. December 2008, 08:48 PM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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TO LIFE
Unregistered
posted
Hi Doc,
I am so happy to hear these lines find you doing much better.
Would you mind sharing how long you were on antibiotics?
I have been on them for about a 1 1/2 years. Went off about the 1 1/4 mark so I feel like here I go again.
If you know any difference in Bartonella and Rheumatic Fever I would really appreciate your wisdom. I have been treated for Bart., even though I was neg.- I know with R. Fever I need to say on antibiotics for at least 5 years. The ring in my aorta in this last couple years came out enlarged, with endocarditis as well.
I believe if I get the right treatment I have a good 30 years.
The last thing I want to do is take more and more antibitics.
But I am either dealing with a false neg- Bart. or R. Fever. I test positive for R/A buy do not have it. It was a Rhumy MD that told me I had lymes in the first place. I had a classic bullseye 7 years ago.
I have children to take care of, which is really rough. Much Love, Roz
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
i was dx by myself in sept 1999 went to 12 doctors prior to seeing the head of neurology at jefferson hosp in philly. i had an elisa of 5.6 and western blot all bands were positive except one. i have been on iv rocephin 2month 2000 2 months 2001 and iv claforan 2months 2005. in between was on oral doxy, oral zithro,flagyl plaquenil, antiviral acyclovir, mepron 3 months,vantin 4months. never tested positive for babs but was treated. tested hla-dr4 positive. i am not real familiar with rf or bart treatment. so basically 5 years on abx of diffrent types i started feeling slightly better in 2006 and stopped abx and started acyclovir and vfend for 3 months, felt better after 15 days.
i continued to improve and presently on prophlaxtic abx zitro and plaquenil for 10 days no more no less if feel any signs of returning symptoms.
i had in 1999 full blown lyme with almost every symptom known, neuro, cfs , fibromyalgia, stomach, intestines, mitral valve prolapse. present symptoms include neuro problems, but at 10%, no fibro, little cfs, no mvp,no intestine or stomach problems.
so improvement is 70% except neuro. i can live with present symptoms as long as i don't push myself. I DON'T MIND THAT THE BUGS ARE IN MY SYSTEM, I DON'T WANT TO PUT THEM IN CIRCULATION.
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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bettyg
Unregistered
posted
merry christmas dave and all here!
dave, thanks for putting into words your story and suggestions! it was a good read.
would you copy your link and post in SUCCESS STORIES? you offer some wonderful advise, and i know all newbies would appreciate getting as much personal experience as possible.
posted
Thx, DocDave - I think each of us has to find the combo of treatments that work for us. We're all different, so that will mean different treatments.
It's important to read here, go to support groups and confer with your doctor or doctors to figure out what to try.
Posts: 13116 | From San Francisco | Registered: May 2006
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I wanted to thank you for taking the time to write about your experiences, and share some wonderful advice. But most of all, I want to thank you for doing this on Christmas Eve and giving many hope, something that is so desperatly needed! God bless you!
This day can be filled with joy, or for so many, filled with depression, sadness and feeling of hopelessness. My guess is that you chose to post this now for these reasons!???? If it was just good timing, the someone elso chose to use you!! Either way----THANK YOU.
I know your screen name from a while back, but I don't remember where or how??? What I do remember is that you sent me an e-mail filled with advice and hope. Really making it clear for me to focus on not giving up! Thank you for that!
DocDave----Merry Christmas to you and may God fill the new year with many blessings!
Janet
Posts: 351 | From Georgia | Registered: Feb 2008
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TO LIFE
Unregistered
posted
Dear Dave,
You have given me alot of hope. I truly feel to plan for the best, instead of the worse.
Like you, I was also bedridden. You have showed me I need to be more patient as well.
[ 26. December 2008, 11:33 PM: Message edited by: TO LIFE ]
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
Listen y'all life is what we make of it. i have had a full and complete life helping people and curing people of pain with their teeth for 24 years. then i thought my life as a caregiver was over, but found that i could help people in a different way than g-d had taught me to give.
now after fighting lyme, i have found new hope in giving back to people with my research and knowledge. as long as i stay healthy, i will help people with lyme, as my new source of caregiving.
life has strange turns and detours, but you can not let this stop your fight to heal yourself.
my life is now filled again with giving and hope, and this gets me thru the day.
i work behind the scenes and very few know actually what i am up to, but it is to help lymies in need.
if anybody has questions that need answering, pm me and i will try to answer anything that i can answer with some authority. any dental question is certainly under this list.
i can't help you or make you make the jump from bed to health, but if you don't lose hope, it can be done. g-d does have a reason,what, i have no idea, but maybe our next lives will be a better and healthy body. DO NOT GIVE UP HOPE< THEY WILL FIND A CURE OR AT LEAST A COCKTAIL TO CONTROL SYMPTOMS IN THE NEAR FUTURE. NOW THAT OBAMA IS IN THE WHITEHOUSE HE WILL BRING SCIENCE, STEM CELLS, DNA AND NEW TECHNOLOGIES BACK INTO THIS COUNTRY.
WE NEED TO NOW FOCUS ON TED DASHCLE TO HELP US WITH OUR NEED FOR RESEARCH.
docdave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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TO LIFE
Unregistered
posted
Hi Again,
I need to be my own advocate. My husband means well he is very healthy and can't blieve I am not better after all these antibiotics.
Prayer does really help, G-d is the greatest physican. You are in my prayers for healing.
Practicing as a Dentist or helping in ANY way with research, helping others; you are still DOCDAVE!!!!!!
Something you said I felt like you were speaking to me! Of course I know that you are sharing how you felt when life took an ugly detour that you didn't choose. But, I was an R.N. for many years and loved my job, my calling in helping others; being a caregiver and always going the extra mile.
That job was taken from me even though I fought this disease for many years while trying to hide my suffering to persue what brought me unbelievable joy! The day that I woke up and couldn't move, couldn't walk or talk anymore; I felt, "Well, I guess I've lost the hardest fight I've ever been in." I'm assuming that you felt that way also????
It was sooo hard to accept, that after about 2 months each time I kept trying to go back to work only to end up back in bed at square 1 after no more than a week or two.
I have accepted it now, I guess, as my prognosis is very poor. I will be started IV again as a last effort at any form of tx. I have so much organ damage, etc... that 5 yrs., give or take is what I have left. No---I have not given up hope, but have bad days due to my children.
Sorry----my point was that you are helping so many and probably more so w/o a drill in your hand! THANK YOU DR.!!!!
I try to help others too and if I've been able to help, it gives me much joy! I pray that the Lord will choose to heal me so that I can follow some of your expamples and footsteps and still be a 'cargiver'.
Again, God Bless!!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
Couple things - first, I fixed a problem of mine over nine months time before I even knew I had Lyme!
My pelvic region was frozen - couldn't move any muscles - everything was so tight - physical therapists gave up on me.
And I got mad, and decided to put myself in the swimming pool, and ordered my body to move. I put a torso float around me to hold me up, and wore a mask and snorkle so I didn't need to turn my head to breathe when doing light laps.
Little by little, I got everything stretched out, over nine months time, with once a week sessions of about an hour's time.
This story parallels DocDave's attempts to improve his health. We are the tortoise, not the hare, when it comes to fixing us.
I say, find the smallest little way to start helping yourself, whatever you feel you respond to, and do more of that. It will be incremental.
I found out a year and a half later that I had Lyme.
Second, DocDave mentioned that now Obama is coming in, that he could help get stem cell research going here.
I have heard reports of stem cell injections in India helping a Lyme patient feel 90 percent better. Also that paraplegic and quadraplegic patients are getting their nerves regenerated, with some feeling and movement restored.
With better treatments, there will be hope.
Posts: 13116 | From San Francisco | Registered: May 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Dave, I always find your story so interesting because it sounds like vfend didn't just treat opportunistic "yeast" but that either fungus was a central pathogen all along (which can happen with mercury poisoning in those with vulnerable detox systems) and/or the vfend also inhibits something else (which was what Schardt thought about diflucan--he thought it inhibited bb). Yet now when you get a flareup you take zith/plaq which is curious. What is your rationale for that? Obviously it works for a flareup yet, you say those years of abx only minimally helped. Yet you don't take vfend during a flareup.
I'm so glad you're finding ways to find meaning and help others. Happy Holidays.
Posts: 2276 | From united states | Registered: Jun 2004
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
first ob< vfend is $1800 per month, and now i have medicare suppliment and it doesn't pay for them. i have 200 pills in storage, but don't want to use. i use zithro for the lyme and plaquenil for babs. justifiable no, works yes. i also noted, which may help others, i had kidney stones about 3 years ago. worse case i had, and doc put me on bactrim ds. we i had the worse herx i had ever had, since my primary herxing with iv rocephin.
i do believe, and have read others with this experience, that bactrim and bb don't like each other. whether this should be added to the protocol along with antivirals and antiyeast, i don't know.
but many people herx on sulfa drugs. you know sulfa was used for syphilis in ww2 prior to all the cillins and cephs were invented.
maybe there is reason for study of this drug for use in bb. i don't remember its action and will do research on it, but it might just be the KISS priciple and ovrtreatment, keep it simple stupid. maybe we are making abx resistant bb and coinf and need to change course to oldy but goody drugs. i may be one of the few here that don't agree with long term abx, and if needed should be pulsed and changed on a regular basis.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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oxygenbabe
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Good ideas Posts: 2276 | From united states | Registered: Jun 2004
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TO LIFE
Unregistered
posted
Hi,
I have made alot of progress on Bactrim DS. I am in agreement about the herx SX., mine were worse than any IV I have had.
Which has been gent.for 3 1/2 weeks, vanco for 4 weeks and Rocephin for 5 months.
About 6 months ago my 16 year old son had a skin staph infection from the gym. He was put on Bactrim DS.
2 tablets twice a daily. I was only able to take 1 or 2 tablets a day. He took 4 tablets with NO side effects. He weighs about 130 pounds.
Bactrim covers Bart. and Lyme. Their is a huge difference between reg. Bactrim and Bactrim DM from what I have heard.
One thing that has helped me out with a rough herx. reaction is high dose aspirin. I was wondering if aspirin, has helped anybody else out?
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
high dose aspirin is very very dangerous. it can cause spontaneous and internal bleeding due to its blood thinning properties.
the normal dose of aspirin and the lethal dose is not that much difference. 2000mg at once will cause brain problems and bleeding.
please be very careful on your aspirin dose. consult your doc. you have probably been on abx lon enough to wean off of them. if that much has not worked but bactrim ds is maybe time to switch.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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DebAz
Unregistered
posted
I so agree with pulsing and cycling of ABX
Once I started doing that. (as I insisted to my docs due to continual and constant herx modes)..
I have seen improvements and ability to actually be out of bed at times to try something else to strengthen my body.
As well it has kept me from being fully depressed in bed.
Thats also a consideration I think sometimes some docs forget as they try to give us what will kill the infections the best..
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Stymielymie/DocDave >>>>>,
Thanks for sharing,about the sucesses!
You mentioned some of the emds I've been wondering about,to fight viruses as well as this Lyme and Co.!
When i can go to a LLMD/Nd again.I'll be armed w/ some good questions,tho'ts and ideas!
May He bless you greatly for your time and help!!!
Jus' Silverwolf!
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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