posted
I WAS DIAGNOSED WITH lyme about 3 years ago and I am still having trouble with effects from it. I had the 30 days of doxycycline which did not work and then finally saw an infectious disease specialist in NC who had me complete 30 days of rocephin via a picc line. I am having terrible leg, knee, and body pain along with painful headaches. Is this Lymes or could it be something else like an autoimmune disease or what could it be? I have been tested for every possible autoimmune disease, one time the tests will come back positive and the next time they are negative. I have had a positive RA, positive ANA, positive Lupus and then when they retested all came back negative! I am tired of suffering! Any ideas are appreciated! Posts: 3 | From FORT POLK, LOUISIANA | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome to LymeNet! I am glad you found us. We will help you here all we can.
You have already learned the first lesson of lyme disease patients: don't go to infectious disease doctors and don't trust what they say.
You still have lyme disease. The ID's treatment of you was inadequate. Happens all the time.
ID docs are generally the "enemies" of lyme patients because they follow the Infectious Disease Society of America (IDSA) lyme treatment guidelines. The IDSA (a panel of 12 ID doctors) strongly believes that 1. lyme is rare, and 2. lyme is easily cured.
Both of these beliefs are totally wrong!
They have passed out this message to all U.S. doctors in their continuing education materials. So, they have miseducated them all.
You have to leave behind the regular doctors and cross over to the small group of doctors that know that 1. lyme is worse than an epidemic in this country, and 2. lyme is extremely difficult to get rid of.
These are what we call "lyme literate doctors" or LLMDs. Most of them had lyme themselves at one time. That is how they learned the truth.
So, basically this disease is in the middle of a major medical controversy. You have the lyme literate doctors on one side, and all the other doctors on the other. Thanks to the miseducation of American doctors by the IDSA, I went undiagnosed for 10 years! My story is all too common.
So, you are learning about it the hard way, just as we all had to do.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is Part 1 of the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. I believe the program is in 2 parts. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
To get your education on lyme disease, I strongly suggest that you read and study the Lyme Treatment Guidelines by Dr. Joseph Burrascano.
Burrascano is the foremost lyme disease pioneer. When he was treating lyme, they came from all over the world to see him. He was the most successful lyme doctor (meaning, at getting people cured) that there was.
Generally, the longer you have been sick with lyme, the longer the treatment to get you well.
Notice this quote from Burrascano:
"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (page 3)
That is what happened to you. It is a very common story.
Whatever you do, don't let any doctors give you steroids. If you do, you could end up with an incurable case of lyme. Read it in Burrascano.
I see you posted for a lyme doctor. Good for you. To see a good one, you generally have to travel and it will be expensive.
Keep posting and we will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I also wanted to tell you that I had undiagnosed lyme disease for 10 years before a doctor thought to test me for lyme.
Still, by going to a lyme doctor who followed the Burrascano protocol, I got rid of all of my diseases. (I had lyme, babesiosis, and bartonella. This is what we all commonly have.)
It is now over 7 years since I completed my treatment and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
I also have at least 3 friends who got rid of lyme by going to doctors who follow Burrascano.
So, get to the best lyme doctor you can afford, and your suffering will eventually go away. There is hope for getting rid of this horrendous disease. But, the doc is the key.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. That is what I learned in my lyme journey. I went to 2 other lyme docs before I found one who had enough expertise to cure me.
If you are willing to travel to this area, I can give you the name of a good doc. You can do telephone appointments after the first in-person appointment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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quote:Originally posted by TF: Many doctors treat lyme disease, but only a few know enough to get rid of it for a person..
Love this part of the post- SO TRUE
-------------------- Good friends are like stars... You don't always see them, but you know they are always there!!! Posts: 362 | From west chester, pa | Registered: Apr 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I agree with most of what TF says and it is so kind of her to stick around and help people after she no longer has lyme symptoms.
The only thing that bothers me is that some of the best lyme docs still cannot cure lyme, it is a chronic disease in a number of patients. She was lucky, I think, and one thing you will learn is that there is a lot of variability in patient response. It sometimes has nothing to do with the skill of the doctor as to whether any specific patient is "cured."
Posts: 2888 | From USA | Registered: Mar 2004
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quote:Originally posted by KATHRYN HEPBURN: I WAS DIAGNOSED WITH lyme about 3 years ago and I am still having trouble with effects from it. I had the 30 days of doxycycline which did not work and then finally saw an infectious disease specialist in NC who had me complete 30 days of rocephin via a picc line. I am having terrible leg, knee, and body pain along with painful headaches. Is this Lymes or could it be something else like an autoimmune disease or what could it be? I have been tested for every possible autoimmune disease, one time the tests will come back positive and the next time they are negative. I have had a positive RA, positive ANA, positive Lupus and then when they retested all came back negative! I am tired of suffering! Any ideas are appreciated!
I assume you tested positive for lyme about 3 years ago?
If so, your current symptoms are 100% lyme, no questions asked. Don`t even think or worry about anything else.
Many of us test negative and are searching for answers and positive tests for many years before there is a proper diagnosis and peace of mind.
Just be proactive in seeking a good LLMD and just as importantly, if not more, do everthing in your power to holistically get better ie) exercise, diet, supps, etc).
Everything is individualized, but Dr. Burrascano seems to have the best,"one size fits all" lyme regimented guidlines to follow. It`s not perfect, but experiment with it, and adjust it according to how you feel and listen to your body. Many times we need to challenge ourselves and push through physical/mental pain barriers and other times we need to back off.
Use the search engine on this site and you will find all the information you need. Ther`s lots of it, so take it one day at a time and don`t let it overwhelm you.
Posts: 85 | From Northeast | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kathryn,
I can't read your post as my eyes need more "breathing room" (as do eyes of many readers here so it's good to have short paragraphs).
Those posting replies above really know what they are talking about. Listen to them. Get to an ILADS educated LLMD for comprehensive treatment.
I do echo poppy's concern about definition of "cure" as there is no known cure for lyme at this time but some reach clear, strong and long remission - and they know what to do if they need to readdress this decisively.
In addition to all the other great detail posted above by others . . . some of the basic notes her explains the dangers of undertreating:
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
=========================
Liver support & Adrenal support is also very important before and all during treatment. Most LLMDs are well aware of those methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Welcome Katheryn! There is a book called: Cure Unknown (worth reading). It explains the whole lyme controversy (why docs miss it) really well.
There is also an award winning documentary on lyme called: Under Our Skin. You can downloaded it for free (just google: under our skin, hulu). It explains the controversy over lyme, and follows a few patients and their journeys.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I did test positive for Lyme disease. I had no problems with doctors saying yes its Lyme disease but no one knew how to correctly treat it. After having the 30 days of rocephin via picc line, all western Blot and Lyme titers came back negative or inactive. After that every doctor that I have seen has said that I have been cured even though I have the same symptoms. I just turned 30 years old and sometimes my body hurts so bad that I cannot even walk to the bathroom, I have to crawl! I am tired of hurting and having doctors tell me that I am seeking drugs. I feel degraded when I am told that! All I want is for them to help me feel better. I have never and hopefully will never be addicted to pain meds. I have never asked that any doctor give me pain meds, ever!
Posts: 3 | From FORT POLK, LOUISIANA | Registered: Sep 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kathryn, you are getting the typical lyme patient treatment--being treated as if you are not really sick, you are mental or a hypochondriac, lazy, or seeking attention or pain pills.
We all went through that with the establishment doctors. Leave them behind and you will not be treated like that anymore. Get to a doctor who understands lyme disease and knows you are REALLY, REALLY SICK!! There, you will be treated with respect.
Over the ten years I sought my diagnosis, I became afraid to go to a new doctor looking for a cure for me. That was because of the treatment I got from all of them in the past when my blood tests came back normal.
They offered me antidepressants. One doctor said to me, "You are normal. You couldn't BE more normal! You are NOT SICK! Do you hear me?" Meanwhile, I couldn't even hold my mouth open to have my teeth cleaned. That's how weak my muscles were.
Posts: 9931 | From Maryland | Registered: Dec 2007
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
You need to book an appointment with a "Lyme Literate" Doctor (referred to on these pages as an LLMD.)
30 days IV is the "max" treatment recommended by the IDSA - but their theories are being disproven almost daily.
Anyone who has the name of a Louisiana LLMD? Or someone good in a nearby state? Please PM Kathryn!
Otherwise, I suggest write to the good folks at the Tick Borne Disease Alliance - they will provide a name for you. Click on the "Treatment" tab and you will find the link.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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