posted
forgive me but i sense i can trust/talk to you and am starting to lose hope...was diagnosed with als 2003.docs stated they didn't know what to call it but said the only thing it could be was als.symptoms 1st started with left leg dragging,especially in the cold in pa.had lower back pain that left then went into such sinus headaches that i had sinus surgery for a deviated septum(did not have a devited septum but needed someone to help me)did not think of lyme until 2004 when i told someone that i had a red rash all over the back of my body=just like the pictures shown on lyme sites.symptoms continue to get worse:loss of fine motor skills in left hand/arm;balance problems-must now use a walker to get around;legs feel like they are there but don't move easily.loss of muscle mass/weakness n left arm and legs.i see dr bur..in west chester-he thinks i had lyme all along.dna and igenex tests come back inconclusive.was on flagyl,cipro and biaxin in dec. and felt like i had mono-was so sick.am on doxi,biaxin and flagel this month.dr.b wants to have a spec scan and put me on 3-4 months of iv as he states we must go at this aggresively.my insurance won't pay for 4 months of iv..i am told not to give up,but i worry that the lyme may be too far gone to allow me to walk normally again or live.any thoughts,please..
Posts: 24 | From pa | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hey Miker
I can tell you this that I have met people at my Dr's office who were told {diagnosed} with ALS Also MS from such hospitals like John Hopkins, Mayo. ____________
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They came in wheelchairs I watched one fellow who was so bad they didnt even bring him into the office then a few months later I saw him he was in terrible shape had to be wheeled in he couldnt even do it himself he moved by a control located near his mouth it steered and controled the chair. Then a few months later I happened to see him again he wheeled himself in and didnt use his mouth control anymore the last I saw him because I had gone off abx's at that time.
The I met another who couldnt even talk later when I saw him he was wheeling himself and he talked to me for 10min {in strong voice} or so said how bad he had been and he was getting better he couldnt wait to get strong enough to hunt and fish again and walk. He I believe was on high doses of oral abx's. He was diagnosed ALS from Johns Hopkins and told to go home and prepair for his death. _____________________
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So if its lyme which it probaly is you can send me your WB results if you want PM me.You can win but its going to take a long time the longer you have it and the longer the treatment. Some damage like tearing tendons or cartilage is reversable only through operations and or therapy. Mucle damage can be reversed so can a lot of nerve damage because of the area the damage occurred rebuilding the coverings on nerves its not like there severed there just bared like a coating on a electrical wire. Recovery is possible lots of Bcomplex Mg glocosomine cq10 and TIME.
Take it one day at a time and dont focus on the time it will take to recover and keep at it.There are so many ups and downs.
Orals can do it but its got to be High doses I have been on orals as high as 6000mgs combined abx's at a time. If you can stomach them and take the acidophilis 2 hrs after each abx you should be able to swing it.Lots of water. I was asked if I wanted to do IV I said lets do the orals,But some people just throw up to much at first so LLMDs go IV's to bring bacteria load down fast.And avoid the disruption to digestive tract stress. ______________________
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Heres some people that went to my DR.
Ken Goshorn spent nearly four years in a battle against the crippling effects of a mysterious illness -- sometimes crawling on his hands and knees to get around his home -- before he began to suspect his problems might be stemming from chronic Lyme disease.
Felled in the fall of 1999 by a general physical weakening and failing muscle coordination, Goshorn, 57, first sought treatment from a chiropractor, then his family doctor and, finally, specialists at Johns Hopkins Hospital where he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
He says he was told there was no hope for improvement.
Mild signs of recovery
Now, eight months after visiting a western Pennsylvania doctor and embarking on a treatment of large doses of antibiotics, Goshorn says he sees mild signs of recovery he was told never to expect.
Goshorn, a former supervisor in Southampton Township, Cumberland County, says doctors at Johns Hopkins told him there was no hope of improvement from symptoms of ALS. However, he and his physical therapist at Shippensburg Health Services, a Summit Health facility, say he has made some modest strides in recent weeks.
Goshorn says he took a "kill me or cure me approach" after his new doctor gave him the go-ahead for physical rehabilitation therapy. He says stressful exercise aggravates the symptoms of ALS patients.
Therapist Mark Maynard says in two months of treating Goshorn's symptoms, he has seen improvements that are "atypical" of ALS expectations.
"With ALS, patients go downhill with overwork, but Ken's stronger, his gait is improved," Maynard says. "He was walking on his toes (to maintain his balance), now he's back on the balls of his feet."
Mission from God
A reverent man with strong religious convictions, Goshorn believes he's been given a mission by God to do everything he can to educate others who suffer from similar symptoms.
Dr. Joseph Joseph, Goshorn's physician in Hermitage, Mercer County, is unwilling to talk about Goshorn's specific circumstances or the particulars of Lyme disease, but Goshorn has no such reservations.
"I've met so many people in this area with symptoms like mine, maybe a dozen people I've run into," Goshorn says. "The more I learn about it, the scarier it gets, but I try to make some fun out of all this, because God told me this is a challenge to life. If I die, that's OK, but if I wake up in the morning and see the sun shining, it means God has someone else for me to talk to."
Word of mouth
Goshorn learned of his Mercer County doctor through word of mouth, from a friend he calls Cindy.
He says the treatment regimen prescribed by Dr. Joseph calls for heavy doses of antibiotics for an extended period -- much longer than 3-4 weeks described on the website of the Center for Disease Control.
According to Goshorn, Cindy has been on the antibiotic regimen for two years. "It's a long, slow process," he says. "She's getting better."
His friend's success motivated him.
"I wouldn't have gone out there if just anyone told me, but I saw the results Cindy got," Goshorn says of his friend.
He says Cindy was also diagnosed with ALS and was on a pronounced downward track before embarking on the heavy antibiotic treatment recommended as an alternative treatment by some doctors for the treatment of Lyme disease.
Goshorn worries that people won't find out about alternative treatments for what is diagnosed as ALS.
"Many doctors are so busy with their regular work that they just don't know about the alternatives," he says. "People have to find out for themselves and insist on other options."
Often mistaken for ALS
Goshorn says Internet research he's done recently indicates Lyme disease is often mistaken for ALS or other afflictions. The disease is difficult to diagnose, he says, because spirochetes, the slender spiral bacteria of Lyme disease, migrate to organs from the bloodstream and can't always be detected by a blood test.
He was diagnosed with Lyme disease on the basis of a Western Blot test that indicates the presence of the bacteria associated with the ailment. Goshorn says even the Western blot test is only about 60 percent accurate.
Goshorn's symptoms became obvious to him in October 1999, although in hindsight he thinks the signs were there much earlier.
"I've pulled hundreds of ticks off my body in the years I worked in the woods and fields as an excavator," he recounts. "And, when I think back on it, I remember tripping or stumbling many times. Those could have been early signs of muscle control problems."
Lyme disease is transmitted by deer ticks infected by the blood of mammals the ticks have fed upon. As many as 23,000 cases were reported in the United States in 2002.
Disease underreported
According to the CDC, the disease is grossly underreported. Twelve states account for 90 percent of the reported cases, with the 3,959 Pennsylvania cases ranking behind only Connecticut -- where the disease was first identified in the town of Lyme -- and New York.
The onset of Lyme disease is usually marked by the appearance of a red "bull's eye" rash at the site of the tick bite within 7-14 days. According to the CDC, the disease can manifest later as chronic symptoms without the appearance of the bull's eye.
The best prevention is to avoid ticks. Proper outdoor clothing and the use an insect repellent containing DEET is recommended.
-------------------- 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
bless you!...your words and your time mean more than you will ever know
Posts: 24 | From pa | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Geez I dont know what to say to your other than Thank you for your reply its appreciated.
Hang in there.
-------------------- 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
did you ever hear of oil of oregano for treating lyme?
Posts: 24 | From pa | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by miker: did you ever hear of oil of oregano for treating lyme?
Yes I have but I would watch adding anything to your abx regime some things interact with abx's.
-------------------- 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.
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