posted
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Posts: 845 | From Eastern USA | Registered: Jul 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Yes, Derek, great web site and beautiful family.
Hopefully you will be able to get the funds for the trip to India. I know many of us are strapped for money with our own treatments being out of pocket, but hopefully someone will be able to help.
Good luck and keep us posted on how you are doing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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i couldn't find info about india that cathy talked about and finally found it, so pasted link above.
good luck derek; majority here are tapped out.
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Derek, best of luck to you.
One other treatment to keep in mind if the things you are doing do not work out or help....have you yet tried IV Rocephin?
I recently read about a patient with an ALS presentation (it sounded pretty severe too) that was helped by IV Rocephin. Within a month she had seen improvement, but maybe for some people it would take longer to see improvement, not sure.
I read about this on LymeMD's blog. Here is a link to his first post about this patient:
posted
my dad has Limb-Girdle Dystrophy, a type of muscular dystrophy. In addition he now also has progressed with dementia, most likely alzheimers. I finally was able to get him tested and yes, he's positive for Lyme. I am sure that this triggered all else.
Best wishes for you and your family in your quest for health!
Posts: 758 | From now TX | Registered: Mar 2001
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
mjbucuk,
after reading your post on this thread I am wondering if after your dad's diagnosis of lyme
disease whether or not he was treated with IV antibiotics or not???
Was there significant improvement?
Please don't keep us hanging!
A fellow "Briar Creeker" where I live here in Florida, is stricken with very debilitating,
crippling and painful "rheumatoid arthritis", even though he has tested negative for the
HLA-B26 marker for that disease.
I have asked him to please type in Rheu.,arthritis and antibiotics on his computer
and then click on any of the websites this inquiry brings up on his screen.
Another acquaintance and fellow Briar Creek resident's wife had suffered with R/A and used
to bowl with the league that I bowl in. Up until the summer or fall of 07 or 08, that is
when his wife seemed to go into the tank and died a few months ago.
Her symptoms seemed to decline into a type of dimentia almost over night alon with her
inability to walk without help because of vertigo type symptoms....
I begged her husband to have her doctors look into treating her with some form of antibiotic
in order to reverse her rapidly declineing physical and mental state.
He, of course, never listened to me. I am, after all, no doctor!
I had to frustratedly stay out of the way and listen for word from him as she rapidly declined
in almost every aspect of her physical and mental state. Supposedly, her(according to her doctors)diagnosis of,
accute rheumatoid arthritis, with complications from, "as yet, some unkown variation or hybrid of the disease",
which was manifesting in all her declining symptoms, ultimately causeing her death!
From what I remember him telling me, her rapid decline ensued, after her mainstream medical doctors,
infused an immune suppressant medication. He told me after that, she became even more
violently ill, so that, she wanted no more doctors putzying around and infusing or forceing her,
to take any more pills orally etc.,because, she felt that, whatever they were giving her,
was making things worse. Not, an unfamiliar scenario of events,
I, personally experienced, prior to my diagnosis of lyme and co.
Of course, whenever she declined, after her doctors futile attempts at lowering her immune system,
because her diseases/s, were, again IMHO, but adhered to by mainstream medicine,
when acting as the pharmaceutical manufacturers instruct, their clients(our mainstream doctors)
are taught to treat, so called, auto-immune diseases,
with steroidal and nonsteroidal immuno-suppressants, in vain attempts at blocking the
body from doing the job it's designed to do. Even worse, allowing, "as yet unknown diseases"
to progress unabated, actually helping these diseases,disseminate, more fully,
their mammalian hosts, organs and tissue, quite frankly, every cell or cells in the human body.
Robbing their ill patients bodies, of their life sustaining abilities!
All because a body of men and women supposedly acting in the best interests of the American citizen.
When, in reality, are alledgedly, backed by the very producers of these immuno-suppressant medications.
Thus, through fear of prosecution, for fraudulent or contrary professional behaviors or procedures or protocols set up by the IDSA.
Dictating to the mainstream medical communities,and campuses, nation wide,
if not world wide, treatment protocol in areas of illness the pharmaceutical companies stand to
gain immeasurable profit(shareing) due to a plethera of recent patents on new medications
which either help progress diseases or merely covers up their symptoms. Allowing what is truly
killing their patients to progress unabated until that patient finally succombs to the
ultimae, death.reating their sick patients.eading, physicians worldwide from
practicing their profession efficaciously.
But I could do nothing, after I tacked to his screen door, the articles I had looked up
concerning lyme arthritis/rheumatoid arthritis and antibiotic efficacy when treating severely
ill patients of similar, if not identical symptoms of decline mentally as well as
physically until death.
Just as this guy Addimof or whatever his name is bancrupts the people fo money.
The pharmaceutical companies and their croonies are bancrupting our own individual bodily immune
systems, instead of working to irradicate the very diseases they were sworn to protect their patients agains.
Man, I hate this disease/s! She was a really nice lady, who, IMHO, did not have to die when she did!
I'm positive there are many more such situations in the U.S.A., as well as the world!
While, scientists, academics and advocate groups, meet in Washington D.C., or anywhere,
in any community, around the globe bickering over "guidelines and treatment protocol etc.."
But, worst of all, the un-Godly,Pompous,pride and refusal, of the IDSA authors,
to just admit they may have made some errors, when authoring the aforementioned guidelines, in
the first and subsequent publications of same.
Sorry, this ran so long. I guess I'm somewhat ill and manifesting in mania myself right now(rambing)etc...
So, please tell us your dad is going to be fine now since his diagnosis and hopefully plan of ABX treatments???
zman
[ 03-25-2009, 05:03 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I tried to have him tested years ago, but no-one listened. At this point he is bed-ridden, and can only travel via ambulance. As there are no close LLMD near their home, and because my dad is so thin, weak, etc. my mother has said it is too late. I tend to agree, as sad and horrible as this sounds. My mom is exhausted trying to take care of him. And with the alzheimer's he often gets onery... and very likely would not take medicine. If they tried IV he'd likely pull it out. He often forgets he cannot stand up and would try to get off the wheelchair. Months ago he was brushing his knees instead of his teeth... with the toothbrush.
Posts: 758 | From now TX | Registered: Mar 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Derek, I'm sorry you have to deal with such a terrible manifestation of lyme disease.
In the book "Cure Unknown", the physician she talks about who had ALS seemed to notice a connection between his condition with lyme and babesia. Have you been treated for babesia?
I had a negative test and treatment really helped me a lot. I don't have ALS though so can't tell you that it helped ALS for me.
I'm sorry if this is a repeat of what you already know but I'll post some links.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Minocin, biaxin xl,doxy,rifampin,mepron, tindamax these seemed to finish off what I had and i had lots of coinfections.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
have u explored use of your own stem cells instead of embreyonic??
some facilities in the US doing testing, trials,e tc:
Wake Forest University- there is page of clinical trials as well. They are using a persons own stem cells and have been able to "regrow" parts so far for repalcement.
University of Pittsburg
hyperbartic oxygen use??
UNC- north carolina research center
i can only say, been on IV rocphin since feb 2 at 2g twice a day mon-thurs. along with mepron/zith
i have had some improvment in legs. i was loosing function of my legs, in the am would not support me standing up and would fall back to the bed. legs would shake uncontrollably walking little distance. i was terrified i was on my way to a wheelchair. did myself harm by trying to up aggressive work outs trying to avoid furthur muscle atrophy.
now, legs are still weak and shake when i try to climb stairs. but, i can stand up more in the morning than i could in jan. i have thought about wheelchair use some, took kids to museaum on spring break- did the walking and payed for it the next 3 days
just trying to say- i thought my demise was going way to fast and was going to be full wheelchair bound within months. but not now. the large muscle pain has decreased a tiny amt with babs tx, still lets me know its there but i am not sitting in bed just rocking for hours bc of pain.
pls consider iv rocephin use, got to give it a chance. LLMD wants a min. of 4 months on it then re-evaluate. there are pts who have been on for yrs. with slow, but steady improvements
wish i could offer financial help but we are beyond strapped ourselves. i can offer prayer for you and your family. God bless
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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Derek is being treted very aggresively for Lyme. He has been on IV Rocpehin for about a year or more.
Posts: 488 | From NY | Registered: Oct 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
There are more ways to "skin a cat" or draw a bedridden patient, gaining the "testing kit" from any of the, "reputable" labs, recommended by the ILADS folks.
I personally, would'nt want anyone to give up on me, if I ever got that bad.
Especially, if there were, the slightest chance,
even, an IM antibiotic of penicillinLA,
might help reverse, at least some of the symptoms of brain infection.
Allowing then further treatments of IV or orals.
Plus the added benefit, administered thru IM Injections, allow the, cancelling out,
the patients ability to pull a picc-line out!
I would think, perhaps twice or more, about possibilities,
you may still have at your disposal, for the benefit of the ill patient.
What is lost by trying? You've obviously, along with his wife, written him off!
Not meaning to sound cold hearted, however, I am passionate,
about the chances, being disallowed this individual,
who cannot speak for himself...or anyone under these same circumstances.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Derek,
Sorry you are so sick.
Have you ever been treated for parasites and Worms. They are a MAJOR part of Lyme disease. Please check out
Everything pictured here is what came pouring out of me.
-------------------- 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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