posted
First of all thanks to everybody on this site, it has helped me through some tough times and has taught me a lot
Brief history...symptoms started in July 04. Dxed with ALS in Feb 05,... then Dxed with Lyme in Sept 05. I have a LLMD and have been getting treatment for 2 yrs with injections and orals. I have 2 questions...
1. Is it ``normal'' to get progressively worse for 2yrs. I've had little periods where I feel like im improving and then just keep sliding down the Lyme hill.
2. I am going to switch LLMD's to one that's a little more aggressive. Between my last appointment with my old LLMD and my first appointment with my new LLMD I am going to run short on my oral ABX by about 3 weeks, question is will it be OK if I don't have meds for that long?
Thanks in advance for any input Derek
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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CaliforniaLyme
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1. No, it is not normal but not unusual. And for ALS Lyme if you show ANY imrpvoement you are in a blessed minority so don't stop Lyme tx no matter what- it invariably leads to death, no offense, just what I have seen over & over. IF you are responsive AT ALL don't go off abx. One guy slid straight down to death when prior to a "break" from abx he had been responsive- I have never seen someone regret something so much- and he was a nice guy-
You are in a subset of neuroLyme which is a bad subset to be in- those with progressive symptoms which can lead to death- I am in that category as well although not ALS I had some ALS symptoms and some Parkie symptoms and got very bad and am fine now. SOme people do live.
I kept progressing for 18 months despite abx- and the first 6 months on IV Rocephin got worse & worse until I turned in the 7th month-
With ALS Lyme I would question orals at all because I only know one ALS/Lymie who has lived on just orals- I am glad you said you have been getting injections- IM Bicilin has worked for some ALS/Lymies- I hope you are treating Babesiosis because almost all surviving ALS/Lymies I know were treated for it- and thatone who just took orals took only Mepron and Zithromax for Babesia and then Doxy-
call me anytime- 1-831-662-2895- well, I am on the west coast adn go to bed early so during the day is better actually not anytime*)!*)!!
Have you tried Ledum? It is a homeopathic/ herbal remedy for Lyme that some ALS/Lymies have found useful. It may be coincidental but it inactivates the TBE virus and locally many of us who were very bad and those who had ALS found it helpful- I turned aorund the time I dosed myself with it so I always mention it and locally we have had 3 of 4 ALS Lymies live.
Don't burn bridges with that LLMD*!)*)!! Many LLMDs won't even treat ALS/Lyme, at all. Because so many die and relatives can sue if people do... Liegner says one of 7 live in ALS/Lyme. That matches what I have seen out in the wide world but locally we have done better!
I attribute that to 2 possible things
1. we got people at time of ALS diagnosis- and TWO people were already diagnosed Lyme when they developed ALS
2. possibly Ledum? I don't know, all used it htough!!!
Are you bulbar or limb onset?? Take care, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Hey Sarah, Thanks for the input....I think. You kind of scared the **** out of me.
I am limb onset started in hands....still can function. I still go to work, drive, walk, talk. but walking is getting dificult...I loose balance once in a while.
Derek
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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SForsgren
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I disagree that people that have been dx'd with ALS invariably die. Look at Dr. M (can't post the full name here). He was in a wheelchair from "ALS" and later found to have Lyme. Treated heavily with Rocephin and today is well from what I understand. Last time I saw him about a year ago, he was walking normally and presenting at a conference. I am not suggesting ALS is not a serious disease. However, I don't think you should become of the mindset that the end result is always dire. A notable percentage of the people that were working with "ALS" and Dr. M were having good results. If it were me, I'd be pushing for Rocephin I think.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymebytes
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Hi Derek, Always sift through information given at any forum, no one here to my knowledge is an LLMD unless I've missed something. Your new LLMD will be the best source for your questions.
I have not heard of what is mentioned in the post that scared you. Member, Sforsgren is a very knowledgable on this subject and has attended many Lyme conferences and has heard some of the best LLMD's in the world speak about Lyme, I tend to side with him.
As far as your questions, one of my LLMD's explained it like this, that antibiotics should make us feel worse for a time and then progressively better, the bad days eventually out weighing the bad. He also said it is a marathon and it is.
Just curious, but what antibiotics are you on? If in 2 years you are still having more bad days than good, I would wonder if you have co-infections holding up progress and that includes viral co-infections, or just maybe on the wrong antibiotics for the strain you have.
Hopefully your new LLMD will find the answer. 3 weeks without antibiotics won't effect LD, it is slow growing, although you might notice you feel worse without them, or better.
tdtid
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Derek,
I honestly don't have the facts to make comment on what is normal or not normal, but I just wanted to jump in here quickly and ask if it would be at all possible to get a refill on your meds from your past LLMD.
Just enough to hold you over until you see the next doctor and figure out which path you are taking.
Also, I have to agree that according to my LLMD, when we aren't getting better or are falling backwards, he feels there is quite often an unaddressed co-infection out there. Hopefully your new LLMD will tune into that as well.
In the mean time, good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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GiGi
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Derek, please know that stopping antibiotics does usually not lead to what some people fear or predict.
There was a time early on when I became hysterical when the pharmacy did not have the meds available for me to be administered at a certain time when it was supposed to be taken.
We learned a lot as we came along.
My husband was immobilized totally for a time -- not a single movement in his body, except the heart was still beating -- and was off antibiotics.
I had times when I was not much better off either. We were off antibiotics for long stretches of time -- while actively supporting our body/ the excretory organs (heart, liver, kidney, skin, mind-yes, I said mind) with all other means available.
We are both today definitely still enjoying life more than ever.
Our improvement came when A L L neurotoxins were addressed, not just Lyme and co-infections. If you do not know much about this, go to www.neuraltherapy.com and study the "Neurotoxin Elimination Protocol".
Also read my post of yesterday "Some Old - Some New".
I wish you the best, and please, do not let anyone scare you. You will find your way out -- sometimes the way out is just a little bumpier than at other times. Do not think Fear. My doctor used to say "the only way out, is the way through". You will make it through, I am certain of that.
Take care.
Just sharing my experiences.
Posts: 9834 | From Washington State | Registered: Oct 2000
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since you said you were taking IM bicillin, I thought I'd bring up the possibility that you may develop an allergy to it during the break or when you restart.
This possibility is so great that my LLMD wouldn't even let me take a break from IV rocephin and bicillin shots because they are closely related drugs.
The bicillin shots seem to really work for tons of people, so I would make an effort not to take a break from them.
As far as the other meds go breaks are probably fine. IMO
I hope your new LLMD is fantastic!
Allie Posts: 300 | From Northeast | Registered: Dec 2006
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TerryK
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Hi Derek, I'm not a doctor and I'm not an expert on ALS/Lyme but I tend to agree with California. I don't want to scare you either but I watched a video where Dr. Whitaker talked about lyme/ALS patients and it made me feel that it is a more serious strain of borrelia that can be fatal fairly quickly. She tried to follow-up on ALS/Lyme patients and when she got back to them, many were deceased. I frankly don't know all the details of the study and can't even remember which CD it was on but I think quite a few of the patients were not being treated for lyme and that's why they did not survive.
Personally, I would do my best to stay on the meds between doctors. No point in taking any chances.
Wishing you the best.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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CaliforniaLyme
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Scott, I did not say that people with ALS dxes invariably die. I said if they stop abx they do.
Obviously I did not say they all die, but the majority DO die. That is not a death sentence- THAT is hope. In all other ALS, all die. With ALS Lyme, some live- some lucky people. SOME people do live- and go on to live very normal, happy lives again.
Derek, limb onset is better. I am very gald to hear you are limb onset. Almost every ALS/Lymie I have known who survived was limb onset.
I was a member of the old ALS/Lyme group and co-moderated that group. I used to web The ALS/Lyme Page and used to co-moderate The ALS/Lyme group when it was 100 ALSers. I know quite a lot about the subject as I myself had many ALS symptoms. I archived every single pubmed article pertaining to ALS/Lyme when the ALS/Lyme page was up.
Lymebytes, why would you say Scott has more knowledge on this subject? I, too, have been to many Lyme conferences but I have a specialized knowledge of ALS/Lyme that Scott does not have from both personal experience of symptoms and from my time with the ALS/Lyme community.
Look Derek, death is not something to be afraid of in my book, regardless. As one who was closer to your boat symptomwise than anybody else who has posted in this thread I would urge you to be very careful about following advice from people who are NOT in your circumstances.
ALS/Lyme is NOT like other Lyme. It is a subcategory that is much more lethal and as such, NOT something to mess around with as far as stopping abx. I would consult a good LLMD before making ANY decision that would take you off antibiotics for even a short time.
Sincerely, Sarah Olson former webmaster The ALS/Lyme Page former co-moderator The ALS/Lyme Group symptom-free person who had mixed ALS/Parkie/neuro mutt symptoms
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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SForsgren
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My interpretation was that "it" was "ALS/Lyme". If you were referring to stopping antibiotics, I am certainly not suggesting that Derek do so without working with his doctor.
All to often I hear people say very final statements about ALS and since we don't have the details of Derek's specific situation, I see no reason to connect him to a negative thought pattern/process that further pushes one towards whatever they connect with. If a person connects with continued progression of disease and to....I won't even say it....because I don't believe it helps us in any way to do so...that only makes things worse.
I have seen people with "ALS" that have done well with treatment. Be aggressive, get the right doctors, connect your doctor with Dr. M for a consult between them possibly, and keep your mind positive and optimistic.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CaliforniaLyme
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p.s. Terry K, I just saw your post, wrote at the same time- yes, those people Lida M was studying were members of our old ALS/Lyme group that had been gathered together by Martin Atkinson-Barr PhD and the majority of them did die.
I knew them. I knew their wives and husbands, talked with them on the phone, sent them things, wrote out their success stories on the ALS Lyme page- and wrote out their memorial stories on the ALS/Lyme page. I loved some of them very dearly. They were my friends.
The ones that made it HAD THINGS IN COMMON- ALL were IV or IM- only locally here have we had one guy who made it on orals- and ALMOST all were treated for Babesiosis as well!! AND almost all were- hate to say it- I myself had bulbar symptoms- but they were almost all limb onset- the survivors-
So, pretty simple, things to tell people who have ALS/Lyme who want to live- in a group of 100 ALS/Lymies that I knew, the only ones who lived did IV or IM, and almost all, not all that lived, but almost all, treated for Babesiosis as well as Lyme-
It is my experience- and I have much experience with ALS/Lyme.
Locally, we have had 3 of 4 ALS/Lymies live. That is higher odds than anywhere else that I know of. I guided those 3 people that lived.
The 4th by the way did not die of ALS exactly. He died of treatment complications of IV. C difficile in his second week of IV Rocephin. Saccharomyces boulardii could haev saved him- or earlier intervention-
So yes, there is hope- lots of hope!!! One guy turned around in 4 days of IV Rocephin- he was the quickest- and others took a long, long time!!
IF YOU HAVE ANY IMPROVEMENT you can improve to almost normal from my experience. It can take a while. But if you lose responsivity you will not necessarily get it back-
I would have tiny indcations of betterness with a steady overall downward progression with every week new horrible neurological things getting progressively worse-
And my family thought I would die-
And we knew it was Lyme wihtout a doubt with me but I just got worse & worse- until I turned big time and got better-
I will put up Dave & Kari Maynes stories for you- they were and are good people, recovered from ALS and living their lives again-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Dave ended up getting normal again after this- and for a while he hung around trying to help people- then left- *********************** Dave Marr-
I was dx'd definite ALS 3/00 and tested positive for Lyme on ELISA and Western Blot 2/01. On
4/18/01 I began an aggressive therapy for Lyme. I started a six week course of IV Rocephin followed with oral Flagyl 500 mg tid and oral doxycycline 100 mg bid.
My ALS symptoms started to deminish at day four of IV Rocephin with spasticity, cramping and virtigo disappearing. Within another three days clonus in ankles and jaw became almost non-existant as well as speech problems and swallowing difficulties.
Prior to IV Rocephin the spasticity and cramping kept me on my butt. My diaphragm would cramp violently if I sneezed. I also fell a lot prior to IV and managed face plants most of the time.
I have not fallen once since abx. I alos changed the oil and filter in my two cars and hand washed them.
During the six weeks of IV Rocephin my ALS symptoms were mostly gone. I was left with the muscle wasting that had occurred since onset. There has been no new wasting as far as I can tell.
Being a smart-*** , I felt there was no need to combine oral flagyl and doxycycline, so I laid off the doxy and started with only the flagyl.
Within four days of just oral flagyl my symptoms all returned, spasticity, cramping and clonus. I started doxy and within 24 hours those symptoms started to disappear.
It is now three months since the start of abx. I have no spasticity, cramping or clonus. My reflexes fall within normal range, they had become quite hyper. My FVC went from 68% prior to abx to 88% now. I have minor foot-drop in the left ankle and the right has none.
Prior to abx I had AFO's for both feet as dorsaflexion was gone. My leg strength is increasing as I am now able to walk two miles/day and continue to shave time from the miles. I could not walk one mile prior to abx.
Basically, what I am left with is a pure lower motoneuron syndrome that has left me with atrophy. My left hand, arm, both shoulders, my neck and left leg have significant loss of muscle. My right leg has rebounded the best as it was not too affected. My right hand and arm are affected but they are also rebounding nicely.
Take care Dave Marr
Jul 2 2001, 2:24 am
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Here's Kari- this was from a post to our old group- the people she addresses in here- Mike is dead- Sean is dead- they were such nice guys!!
But Derek, they were *never* responsive. The trick with ALS/Lyme is that if you are responsive from the get go you tend to continue to be- off andon sometimes- maybe off off- but if you are or were- people can usually improve.
Most people who die from ALS/Lyme never get ANY imrprovements from abx, just go downhill, usually faster...
So what does that say- that says to me that YOU WILL LIVE- you have been responsive- and that means a lot!!! Very sincerely, Sarah ************************* Lyme Misdiagnosed as ALS: It Does Happen.
Kari Mayne
I contracted Lyme in February of 1988 - thirteen years ago. I was not diagnosed with lyme until August 1999, after being sick for 11 years (and having a stillborn child - lyme of course.)
Before I was finally diagnosed with lyme I exhibited all the classic ALS symptoms, and had lost an uncle to ALS. Thus - the doctors thought they had an ALS diagnosis nailed down tight. Only through my stubborness and refusal to accept the ALS dx did I research the internet and find an llmd.
My first visit, even without labs, the doc - God bless him - said I had the worst case of lyme he had ever seen at that time. Subsequent lab tests ELISA and Western Blot both positive.
The symptoms which are now COMPLETELY GONE are:
no more severe muscle cramps no more fasciculations no more numbness in face/tongue/forehead I can swallow without difficulty now no more slurring of speech no more limping and severe weakness in legs no more ringing of ears no more confusion/memory loss/lyme fog/depression no more debilitating fatigue I can now pick up pennies off the floor - fine motor skills are back in hands I can lift my eyebrows now I don't choke on liquids Bright light doesn't hurt my eyes anymore Reynaud's syndrome is better No more intense heel/bottom of foot pain No more TMJ or tooth pain No more running into walls, doors because of poor balance or legs "giving out from under me" I can drive without getting lost No more hallucinations I can count to 10 I can raise my arms to shampoo my hair No more pain in joints or numbness in limbs
Of course, there's more symptoms...but you all know what they are. These were just the ones that plagued me most. Everyone, of course, responds differently to medication and recovers at different rates. But, I have no doubt that all of you will get better over time. Probably the thing that helped me most is the Bicillin shots.
Behaviorally, plenty of REST and the determination that I would not identify myself as a "sick" person kept my attitude positive and my spirits up even when my body argued the opposite. I have lyme, lyme doesn't have me kind of thinking.
I see a great spirit of helpfullness and positive thinking in these emails which makes me want to respond. In various lyme chats and online discussion I have sometimes encountered "poor me" kinds of attitudes. NOT IN THIS NEWSLETTER
- Renee and Sean you're awesome! I haven't really participated in any support groups or discussions such as this in a while. Since I've gotten better, I don't like to be reminded of my lyme nightmare (even though I am still taking Bicillin shots twice weekly.) But you people are so sharp and caring I felt I needed to tell you a good news story.
Bicillin shots have almost cured me. Been taking them a year now...99% of my symptoms are gone. Lyme can be defeated! I started seeing improvement (dramatic) in a couple of months after I started with the Bicillin shots. My doctor was amazed.
It's wierd, you sometimes don't notice that you're getting better because THERE ARE SO MANY, MANY THINGS that are hurting or not working right. Then, it will just come to you "Oh, I didn't slur my S's today" or "My left hand doesn't feel as stiff and numb as it did." or "The sun didn't hurt my eyes today." Sometimes it takes awhile to notice because to you the changes seem small, but they all add up.
The biggies for Mike - like getting out of bed unassisted - take longer because there are more muscles/nerves/joints/etc. involved in doing them. Each muscle/nerve/joint has to heal (and there are many, many of them) before the motion gets easier. That's a lot of healing.
That's why you'll see the small changes first - such as ears stop ringing. Not as much is involved. My response is that Mike is probably improving dramatically, but it may not be in the areas that worry him most.
Regarding the Bicillin shots. Yes, you will find hard lumps at the injection site. There's no way to avoid it. They will eventually get smaller - but not go away. You see, it's scar tissue under there. Every time you get a shot, it damages the tissue. These shots are powerful. You will experience times where it's very difficult to insert the needle because you'll run into a lump of scar tissue built up from continuous injections. It really hurts when this happens.
Yes, sometimes I have bicillin leaking back out of the injection site. It doesn't worry me. It's usually because I got active too fast before my body absorbed the Bicillin. Just slap a bandaid on their and wait a couple of minutes before attempting to move.
I sympathize with dilemma re: childcare when you can't get out of bed. My doc told me to put my 2 1/2 year old into daycare last May. This month - we took him out because I am well!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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Derek,
In our old ALS/Lyme group there was no correlation between those who lived or died and their positivity or negativity in mood or in ideation.
Sean and Mike, who both died, were the most upbeat, positive, convinced-they-were-gonna make it guys in the world and they died. Also Vince- boy he was positive- ALWAYS convinced until the end he would make it!! NEVER said a negative word- never indicated a negative thought-
Dave Marr, on the other hand, bless him, was kind of a moody sometimes grim kinda guy- and he lived- gloriously*)*)!! (But he was also very charming and a good hearted guy- but undeniably not a sunshine-y fellow!)
Just fyi, there is no correlation between mood and survival in ALS/Lyme- if you are depressed, it is okay.
In fact, in your circumstances, it is perfectly natural and it is unhealthy to deny the sad parts of life which include death. I went to a therapist when I was still ambulatory adn really sick and I highly recommend it- it is healthy to talk about whatever oyu need to which can include mortality since you have been diagnosed with a usually fatal disease.
I professionally trained as a counselor and worked with the mentally ill in inpatient settings. There is nothing wrong with talking about death and it doesn't make you more likely to die. Pretending you are in no danger of dying with an ALS diagnosis, however, will make you more likely to die by making choices which ignore reality!*))*!!
I know many ALS/Lymies who have lived. Many. I know many who have gone back to normal lives or almost normal lives.
You fit the profile of a survivor by certain things you have said-
* limb onset- greater chance survival
* degree of disability pre-abx- low!!!
* injections of abx!!! yay*)!!!
* indication of responsivity- yay!! does not mean non-stop getting better- with ALS Lyme any getting better means A LOT!!! ANy responsitivity incidates a continuation of that usually-
You ARE on a good path.
We had a woman enter our group who claimed to have had ALS when she had nerve paralysis- completely transitory adn temporary- lasted for one day- and yet she would tell ALSers she had recovered from ALS. Nerve paralysis is not from motor neurons like ALS. Temporary paralysis in Lyme is NOT ALS. So just a word of caution. There are people who claim to have answers here who may be good hearted but do not understand science. Temporary nerve paralysis and ALS are not the same, period.
The 3 locals who lived and are still living who had ALS diagnoses did the following:
1 guy treated just with orals, treated for Babesiosis only with mepron & Zithromax, then Doxy a year later when he went downhill after going off- only ALSer I know who has lived with orals- doing great now
1 guy treated for Babesiosis with mepron & zith, IV 7 months and IV IGG ongoing for years once a month once he got better, had been in wheelchair for years prior to abx, walked again for a few years, relapsed had more IV, got better again, is doing great now also on maintenance abx
1 guy treated for 6 months orals then 6 months IV Rocpehin gots lots better never 100%, on & off abx steadily improving, also treated for Babesiosis- but shorter term, Mepron & Zith
Guy #1 is like normal now and he got ALS diagnosis about 5 years back (he is a total jerk by the way and a felon, has been arrested for assault multiple times- NOT a sunny spirit!! why HE lived when people like Mike & Sean & Vince died- nope- negativity-versus positivty has nothing to do with it)
Guy #2 is doing good and he got diagnosed ALS about 9 years ago (he is a VERY depressive individual- really- very morbid!!)
Guy #3 got diagnosed ALS about 3-4 years ago!! He has a great sense of humor and is very positive but he has also done the least well of the 3!!! So no way does mood or ideation have any effect with survival-!!!
So these are 3 guys who made it- out of 4!!! The 4th guy was already completely bedridden when he sought Lyme treatment. He was so weak. I think that makes a real difference- how far people have progressed- physically-
Talk to your LLMD before making any big decisions*)!*!)! And talk to Lou- Lou knows more about ALS/Lyme than I do- he knows Doc M from Colorado and participated in some stuff they were trying-
Take care- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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SForsgren
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quote:Originally posted by CaliforniaLyme: In our old ALS/Lyme group there was no correlation between those who lived or died and their positivity or negativity in mood or in ideation.
Sean and Mike, who both died, were the most upbeat, positive, convinced-they-were-gonna make it guys in the world and they died. Also Vince- boy he was positive- ALWAYS convinced until the end he would make it!! NEVER said a negative word- never indicated a negative thought-
Dave Marr, on the other hand, bless him, was kind of a moody sometimes grim kinda guy- and he lived- gloriously*)*)!! (But he was also very charming and a good hearted guy- but undeniably not a sunshine-y fellow!)
Just fyi, there is no correlation between mood and survival in ALS/Lyme- if you are depressed, it is okay.
In fact, in your circumstances, it is perfectly natural and it is unhealthy to deny the sad parts of life which include death. I went to a therapist when I was still ambulatory adn really sick and I highly recommend it- it is healthy to talk about whatever oyu need to which can include mortality since you have been diagnosed with a usually fatal disease.
I professionally trained as a counselor and worked with the mentally ill in inpatient settings. There is nothing wrong with talking about death and it doesn't make you more likely to die. Pretending you are in no danger of dying with an ALS diagnosis, however, will make you more likely to die by making choices which ignore reality!*))*!!
I know many ALS/Lymies who have lived. Many. I know many who have gone back to normal lives or almost normal lives.
You fit the profile of a survivor by certain things you have said-
* limb onset- greater chance survival
* degree of disability pre-abx- low!!!
* injections of abx!!! yay*)!!!
* indication of responsivity- yay!! does not mean non-stop getting better- with ALS Lyme any getting better means A LOT!!! ANy responsitivity incidates a continuation of that usually-
You ARE on a good path.
We had a woman enter our group who claimed to have had ALS when she had nerve paralysis- completely transitory adn temporary- lasted for one day- and yet she would tell ALSers she had recovered from ALS. Nerve paralysis is not from motor neurons like ALS. Temporary paralysis in Lyme is NOT ALS. So just a word of caution. There are people who claim to have answers here who may be good hearted but do not understand science. Temporary nerve paralysis and ALS are not the same, period.
The 3 locals who lived and are still living who had ALS diagnoses did the following:
1 guy treated just with orals, treated for Babesiosis only with mepron & Zithromax, then Doxy a year later when he went downhill after going off- only ALSer I know who has lived with orals- doing great now
1 guy treated for Babesiosis with mepron & zith, IV 7 months and IV IGG ongoing for years once a month once he got better, had been in wheelchair for years prior to abx, walked again for a few years, relapsed had more IV, got better again, is doing great now also on maintenance abx
1 guy treated for 6 months orals then 6 months IV Rocpehin gots lots better never 100%, on & off abx steadily improving, also treated for Babesiosis- but shorter term, Mepron & Zith
Guy #1 is like normal now and he got ALS diagnosis about 5 years back (he is a total jerk by the way and a felon, has been arrested for assault multiple times- NOT a sunny spirit!! why HE lived when people like Mike & Sean & Vince died- nope- negativity-versus positivty has nothing to do with it)
Guy #2 is doing good and he got diagnosed ALS about 9 years ago (he is a VERY depressive individual- really- very morbid!!)
Guy #3 got diagnosed ALS about 3-4 years ago!! He has a great sense of humor and is very positive but he has also done the least well of the 3!!! So no way does mood or ideation have any effect with survival-!!!
So these are 3 guys who made it- out of 4!!! The 4th guy was already completely bedridden when he sought Lyme treatment. He was so weak. I think that makes a real difference- how far people have progressed- physically-
Talk to your LLMD before making any big decisions*)!*!)! And talk to Lou- Lou knows more about ALS/Lyme than I do- he knows Doc M from Colorado and participated in some stuff they were trying-
Take care- Best wishes, Sarah
A conclusion that suggests that state of mind has nothing to do with wellness and that we can be as negative as we want and not impact our outcomes seems unsupportable by scientific literature.
I am not suggesting that if someone has a condition and feels "depressed" that this is "negative" or that the feeling of depression somehow worsens the condition. I am suggesting that connecting your thought process to a result, increases the likelihood of that result. If you focus on life and healing, you may in fact attain life and healing. If you focus on...., you may in fact create that as well. The mind is powerful. Laws of attaction.
Given the options, why would one choose to be "negative" over being positive. I just don't understand the logic in it. Unfortunately, it seems that many choose that path. Maybe at some point down the road, the path of these groups will cross once again and we can see which group of people is truly doing better.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Scott said:
I am not suggesting that if someone has a condition and feels "depressed" that this is "negative" or that the feeling of depression somehow worsens the condition. I am suggesting that connecting your thought process to a result, increases the likelihood of that result. If you focus on life and healing, you may in fact attain life and healing. If you focus on...., you may in fact create that as well. The mind is powerful. Laws of attaction. UNQUOTE
WRONG!!! Not with REAL LIFE!!!
The ALS/lyme group EXISTED.
Lou can testify that survival did NOT CORRELATE to what people focused on AT ALL.
The most positive spiritually motivated peole- DIED. The most positive presenting people in our ALS/Lyme group all DIED.
So by that logic you can attract ALS is what you're saying? You attract illness? It's peoples fault they get sick?
I read what you said Scott but it didn't make any sense with what I have seen- with *who* I have seen- live and die.
Not in my experience.
I don't consider myself to be negative AT all Scott.
In fact, I am known as a very sunshiney person to the extent that I used to get called Rebecca as in Rebecca of Sunnybrook farm!!!
It is NOT negative to acknowledge death.
It is unhealthy to NOT acknowledge death.
Acknowledgment does not mean obsessing on.
It is POSITIVE to acknowledge death as a part of this great experience we all share, and to see where it lies in realtion to oneself- and to deal with it.
In your espoused worldview one would perhaps never acknowledge death?
Is that right? Since you can't name it?
That is not healthy.
I am a very positive, happy person. I live a very satifying life.
Amanda Schmidt, age 11, who died of lyme disease, was also a happy, good kid whose favorite holiday was... can you guess?
Halloween!!!
Does that make me negative to remember her? To have a memorial page? I don't think so. I htink she was a good kid who died of a sucky disease and that it would be negative to forget her or to never mention those who die.
Sean of Sean & Renee? He was great!!! Dennis who told jokes- such BAD BAD jokes- he was really funny when he least meant to be!!!! GREAT people. I am glad I remember the dead.
Mexico celebrates The Day of the Dead and so do MANY cultures. The USA has this kind of separation from death which is not healthy.
It is NOT healthy to never say the word death for fear of conencting to it!
I will yell DEATH right now! DEATH! Who does death have more power over, Scott? You, afraid to even write it?
No, I am not negative.
You calling me negative does not make me negative. I sew pumpkin costumes for my daughetrs and take them to play rehearsal. I cook magnificent dinners and have fun with my adorable hermaphrodite pygmy goat Annie and my lovely lovely pet cats!!!!!!!!!!!!!
I LOVE life. I LOVE life. I was dying like some of us here may be- and now I have had had YEARS of life life lIFE!!!
The dead are my friends. BIlly Boesche was my friend. ALS/Lyme on this board. Was BIlly negative? No, he wasn't. But he still died. And he was a sweetie who loved kittens!!!!!!!!!! Billy was positive and, dead, he is positive!! Mentioning his EXISTENCE does not make me negative. I CELEBRATE that he lived, that he breathed, that he wrote letters and posted on here.
Death comes to us all, all of us, here, whether of Lyme, whether now, whether years from now- Death will come for us all-
And Derek- you have a very good chance of living for years to come- but acknowledging that you have an ALS diagnosis DOES mean that you have more serious disease than most people here- although they will not like to admit it- as you can see-
Did I write:
Dear Derek, Please focus on death and think negatively. Sincerely, Sarah
Nope*)*)!*)!! I believe what I wrote was my very FULL, very LENGTHY very EDUCATED experience with ALS/Lyme. And part of that is that *gasp* ALS kills people!!! People die!!! And I wrote you, Derek, the things I know that will help you beat the odds, from what I have learned. The things that will help you LIVE!! LIVE!!!!
I was trying to help. Positively*)!*)!
Best wishes for you, Derek, Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks to everyone who posted, this is why I love this site ....everyone gives their honest opinion. I know that none of us are Dr.'s but im pretty sure that collectively we know more about Lyme than most ducks out there. Sarah....thank you for your honesty. Yes it did scare me a little but I needed that. I was starting to get kind of lazy in my treatment....kind of forgetting how serious my ``kind'' of Lyme is. When someone tells you that you have 3-5 years to live (even though it was a duck) you feel very mortal. It puts a lot into perspective, and at times I need to be reminded of that. On the brighter side of that coin that duck said that to me 3yrs ago, so..So far I am proving him wrong. Like you said...I have a lot of things in my favor to beat this, and I know I can. That's why im switching LLMD's for more aggressive treatment...hopefully IV. If I can have some improvement on IM and orals I think I would have more on IV. Last week I thought that I finally hit the corner, I felt great for like a week, walking improved, strength improved...everything, and then I started to slide again. Today I feel good, hopefully it lasts
Scott, thank you for your words of encouragement. I do tend to agree about positive thinking. I am not ignoring what I am up against and I know I could die trying but I don't dwell on that, it's not worth it and it doesn't help me out. Life is way too short not to have a positive attitude. It doesn't work for everyone but I feel for me it does. GiGi thank you also. I am also doing a lot of detox thing and I feel that has helped out tremendously. Thanks for the kind words and thoughts That being said I made an appointment with the old LLMD between the consult with the new LLMD so I will not go without IM's and orals at all between visits
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
CALyme, by your own admission in the Bryan Rosner book thread and elsewhere, there are `regional variations' regarding Lyme and other diseases. That's why I have difficulty understanding why you only rely on your LOCAL experience so much in these discussions. This information may not be very helpful at all to someone out of your area, or out of your realm of personal experience. These are `global' problems, after all.
Interesting note you made about using the Ledum - if I may ask, did you (and others) do this on your own or under the advice of a practitioner? And what potency(ies) did you use? (I'm just curious to learn of others' experiences with Ledum.)
Hang in there Derek! It sounds like you have some very positive support.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Truthfinder,
With my experience with the ALS/Lyme group that was an experience with ALS/Lymies from all over the country thus you notice I did not highlight what JUST worked locally. Those factors I named that were important were all across the country with people who were in an online group but with whom I also communictaed frequently by phone. What has been true locally for ALS/Lyme people here was true across the country although it has worked even better locally than it did cross-country. SO I feel very ethical in offering Derek my experience, strength, and hope in that regard.
Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Derek, I'm so glad you're going to "kick it into high gear." Go after it with all guns blazing!!
Sarah, you are such an amazing resource. Thanks for all you give to the lyme community.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Derek~ Have you been tested for viruses? Specifically, HHV-6, EBV, CMV and Parvo?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Derek,
Thanks for taking the high road regarding the way your post turned into a fist fight.
I agree your situation is serious. Getting a second opinion is a very good idea. I hope the 2nd LLMD will test you for many other things that could be sabotaging your efforts to get well.
You don't have to stop current treatment while testing for heavy metal toxicity, leaky gut syndrome, co-infections etc. In order to get total care, you may need to work with more than one type doctor at a time. Just be sure each is fully aware of what the other is doing.
Scott makes a very good point about Dr. M. Look into his story for both treatment info and inspiration.
I'm sure Calif did not mean to scare you, just to stress the importance of not stopping meds on your own. But once she got on the defensive she began to drive her point home with a sledge hammer. Ouch!
Allie also has a point about possible allergic reactions to the meds.
GiGi and Tracy are invaluable sources of information.
I'm a firm believer that as you got into your illness, so you can also get out of it.
Good luck, God bless and keep looking for the answers. I pray God sends you to the right doctor to heal you. I believe Dr. M still practices medicine. If so, he would certainly be worth a visit.
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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posted
Sadly, Dr. M had to close his practice in July due to health issues (not ALS related!) PM me if you want the name of the doctor he recommended with ALS focus.
Posts: 136 | From North Carolina | Registered: Apr 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I know Dr. M was recently here in Northern CA and visiting with other Lyme doctors on some of his approaches, successes, etc. So, he's still doing well from what I understand.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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