posted
I have gotten sick with what I thought was the flu 11 years ago, had allergic responses from 2 different antibiotics so I just stopped them. More symptoms one after another from numbness, tingling off balance joint pain,confusion, memory, etc.etc. Sent for mri and shows lesions on brain. went to neuro who says you have ms did spinal tap for every disease she could think of, non conclusive for anything. not 1 positive test, found a llmd antibiotics for almost 2 years,wont give me iv because no positive test, in the mean time 9 years ago went into the hospital from same problem I am having now my ribs and and legs and feet are feeling like they are being squeezed at times and in 11 years I have NOT had any muscle loss.
Posts: 1 | From new jersey | Registered: Jul 2008
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I am on IV and am patiently waiting for improvement. I have not tested positive to lyme yet through 3 labs, and spinal tap.
barb
Posts: 167 | From USA | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Breaking up kellyh's post so others can more easily read it:
I have gotten sick with what I thought was the flu 11 years ago, had allergic responses from 2 different antibiotics so I just stopped them.
More symptoms one after another from numbness, tingling off balance joint pain,confusion, memory, etc.etc.
Sent for mri and shows lesions on brain. went to neuro who says you have ms did spinal tap for every disease she could think of, non conclusive for anything.
not 1 positive test, found a llmd antibiotics for almost 2 years,wont give me iv because no positive test,
in the mean time 9 years ago went into the hospital from same problem I am having now
my ribs and and legs and feet are feeling like they are being squeezed at times and in 11 years I have NOT had any muscle loss.
My hands are rather numb today, but still they hurt too much to type. I will copy and paste some (too many?) articles for you and let others come with comforting words and experiences to relate.
Be sure to see the NEWBIE Threads at the top of the medical forum index. Treepatrol and BettyG each have a different set for you.
If you can, it would be best to arrange your posts as you see here.
Many of us here just see a swirl of grey unless the paragraphs are short and there's lots of white space. Thanks.
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ILADS Treatment Guidelines can be downloaded here:
1. was the LLMD you saw, an ILADS member, or at least had that doctor read all of ILADS members' works?
2. Did your previous LLMD assess / test you for other tick-borne diseases (TBD) such as babesia, ehrlichia, bartonella, and others?
3. Are you sure the response to the antibiotics (abx) was an allergy or might it have been a herx reaction?
I am, in NO way, saying go back on those as there are many others that a well-versed LLMD could choose from - but just alerting you that what is called a herxheimer reaction can be difficult to distinguish from an allergy.
Many who have lyme will have a herx reaction with abx.
You MUST do liver support in order to help prevent or lessen a herx. Such support will be detailed in links to follow - or in books. Milk Thistle is the most well known although this alone is an extensive area of study.
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As you sort this out, there are some complementary approaches that might help ease some of the symptoms.
Cranial-sacral treatments with a lyme literate osteopathic physician or well-trained P.T. might also help if there is some nerve constriction in the spine.
Or - you can go just for your body, not looking for that doctor to address or treat lyme.
You might contact the group below and see if they have any doctors in your area who have been trained in this method:
THE UPLEDGER INSTITUTE
Founded by John E. Upledger, they offer workshops and clinical services in craniosacral therapy and other techniques.
Find others in your area who can provide guidance on doctors, etc.
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[ 29. July 2008, 02:28 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
The objectives of this article are to cover issues related to Lyme disease that are not even-handedly addressed in the current literature. It will:
1 Present a practical approach for making the diagnosis of neuroborreliosis,
2 Explore the other side of the post-Lyme syndrome (i.e. the likelihood of chronic ongoing infection),
3 Discuss the relationship between MS and Lyme,
4 Critique the current regimens published for treating neuroborreliosis, and
5 Present my own approach which may differ from some leading authorities.
``Anyone who, in discussion, relies upon authority uses not his understanding but rather his memory.''
--Leonardo da Vinci, Notebooks (c. 1500)
It is hoped this data will provide the reader with a broader understanding of neuroborreliosis so that he or she may better use current and evolving knowledge for clinical decision making.
--
- full two page article at link above. Be sure to see the second page, it can be overlooked.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I could not get the link to go through so here's the home site. If you need to see it at the link, contact the site manager of PHA - but I could not figure that out either.
The Patient as Diagnostician: How the Internet Helped an MS Patient Find Her True Diagnosis
by Ginger Savely, FNP-C
How many of you have surfed the Web to look for a diagnosis to fit the symptoms that you or one of your loved ones is experiencing?
As a nurse practitioner I often see patients who, when dissatisfied with a diagnosis (or lack of diagnosis) given to them by a health care provider, look to the Internet to discover what is really wrong with them.
Many of my colleagues scoff at this behavior, saying that the Internet is the worst thing that has ever happened to health care.
They are displeased when patients come in with a probable diagnosis already in mind and present a list of tests they are convinced are needed in order to prove or disprove their conclusion.
The concern of many health care providers is that the information on the Internet is unreliable and that it encourages patients to obsess over symptoms and even to imagine new symptoms in order to fit the criteria necessary for a certain diagnosis. ``A little bit of knowledge is a dangerous thing,'' they often say.
Most of the patients I see have been through the mill when it comes to doctors and testing and have lost their faith in the health care system that has failed them.
So, it comes as no surprise to me that these patients have learned to take their health care into their own hands, educating themselves to the point of being able to speak ``medicalese'' like a pro.
Time and time again I have observed that this tendency on the part of patients to become medically educated has been to their advantage, and many a life has been saved or bettered through the process. In my opinion this proactive behavior on the part of patients should be encouraged.
Maria: A Case in Point
Maria lives in Austin, Texas and is a petite, 49 year old lady who appears younger than her age. During our first encounter she explained that she was frustrated and unwilling to accept a recent diagnosis of multiple sclerosis (MS).
She had been experiencing recurrent right-sided facial pain (trigeminal neuralgia) for five years which had led her to consult a neurologist. An MRI brain scan had shown white patches indicative of nerve inflammation.
A spinal tap had revealed unusual proteins consistent with an MS diagnosis, and a recent repeat MRI had shown progression of the disease with increased number and size of the inflammatory lesions.
Based on her symptoms and these findings, her neurologist had diagnosed her with MS and advised her to begin immunosuppressive therapy in order to decrease inflammation.
Maria had been researching her symptoms on the Internet, and had become convinced that her problem was actually related to advanced neurologic Lyme disease.
She had been unable to convince her neurologist that this might be the case. He felt it was a clear-cut case of MS and was not inclined to consider the possibility of an illness that did not appear to be endemic to central Texas.
To placate her he had ordered a Lyme screening test, the ELISA test, which had come back negative.
Because Maria was convinced her problem was due to a bacterial infection, she refused to follow the advice of her neurologist to begin immunosuppressive therapy, fearing that this would affect her ability to fight the infection.
Maria came to me because she had heard of my special interest in the diagnosis and treatment of Lyme disease. I reviewed her medical history and made special note of her report of a tick attachment to her right lower leg six years earlier, followed by a 5 inch bullseye-shaped rash. This had occurred while she was camping in a rural area of central Texas.
Symptoms had started soon afterward. Some of these symptoms were typical of both Lyme disease and MS, such as insomnia, anxiety, confusion, dizziness, weakness, numbness, blood pressure fluctuations, constipation, acid reflux, urinary urgency, and exhaustion.
She was also experiencing symptoms that were typical of Lyme disease but not of MS: joint pain, muscle aches, jaw and tooth pain, ringing in the ears, and a stiff neck.
Many classic MS symptoms were missing, such as optic nerve inflammation, double vision, abnormal eye movements, spasticity, muscle atrophy and balance problems.
Her in-office physical exam did not reveal any obvious abnormalities.
I was familiar with a study published by the Texas Department of Health in 1994 that had revealed that over 1% of ticks collected in eight Texas state parks had tested positive for borrelia spirochetes, the corkscrew-shaped causative agents of Lyme disease.
In fact, per the International Lyme and Associated Disease Society (ILADS), borrelia-carrying ticks had been found in every state in the union. The rash Maria had described on her leg certainly sounded like erythema migrans, the classic ``bullseye'' rash that is diagnostic for Lyme disease.
Her negative result on the ELISA screening test that had been ordered by her neurologist didn't impress me; ELISA tests for Lyme borreliosis are notoriously insensitive. There is evidence that the ELISA has a sensitivity of only 30-40% and therefore does not meet the 95% sensitivity criteria necessary for a screening test.
The Western blot is a better test to use for screening. Unfortunately most labs do not report the individual reactive bands on the blot but report only a positive or negative end-result based on the presence of bands relevant for epidemiologic rather than diagnostic criteria. It is of utmost importance to choose a lab that reports ALL of the positive bands.
Diagnosis of a sick patient and qualification for epidemiologic inclusion are two different matters! I chose to use the highly reputable IGeneX Laboratories in Palo Alto, California.
Through IGeneX testing the patient was positive for Lyme both by the Western blot IgM and by antigen captured in the urine. The history, symptoms, and now the lab results were pointing to a diagnosis of late-stage neurologic Lyme disease (neuroborreliosis) rather than MS.
After three months of intravenous (IV) and oral antibiotic treatment, Maria reported several subjective improvements. Her overall fatigue, urinary frequency, and discomfort were lessened. The numbness in her hands and feet was gone, as was her subjective sensation of weakness.
Maria continued to tolerate the treatment well. After six months of IV antibiotics a repeat MRI showed a 25% reduction in inflammatory lesions. She reported overall improvement, with continually decreasing fatigue, malaise, weakness, cognitive problems, and muscle pain.
She continues to improve on IV antibiotics.
MS is a progressive disease, and although remissions are common, a reduction in brain inflammation is not.
This improvement in the patient's MRI was quite a surprise for the neurologist and served to strengthen my belief that the patient's problem all along had been neuroborreliosis rather than MS.
Because of the many similarities in the two diagnoses, it is extremely important to pay attention to the patient's history and development of symptoms and to know how to test correctly for the presence of borrelia antibodies.
MS is a diagnosis based primarily on subjective symptoms, and according to the CDC, Lyme disease is as well.
The previously mentioned MRI and spinal tap findings in this patient were not diagnostic of MS per se, since they are often also present in Lyme patients with neurologic involvement.
When clinicians complain about the incorrect medical information patients come across on the Internet or the tendency for patients to self-diagnose based on this information, they need to look at the bigger picture and realize that the occasional enlightening discovery is well worth the inevitable false alarms.
I continue to support patients who research their symptoms on the Web, believing it empowers them to be proactive about their health care. Sometimes, as was the case with Maria, this kind of patient collaboration can prove to be a life-saver.
See also:
Fritzsche, M. Chronic Lyme Borreliosis at the Root of Multiple Sclerosis: Is a Cure with Antibiotics Attainable? Medical Hypotheses 2005; 64 (3): 438-448.
[ 29. July 2008, 07:01 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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After all that, abx are not the answer for everyone. However, you should be evaluated by an ILADS' educated LLMD. From there you can make a decision.
In the meantime, steroids are often used as a treatment for MS.
Lyme patients often have disasterous results from steroids, even creams. IF a life-threatening emergency, steroids combined with antibiotics may be advised. A really good LLMD should guild treatment in such a case.
Also to note, spinal taps (lumbar punctures) are not very good at detecting lyme.
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Because I want to know all there is to consider regarding treatments, I assume others might, too. So, soon to stop overloading you here, but I wanted to be sure you have enough to consider (you can laugh, now - and take a break).
BIONIC 880
There is some excitement over a new treatment protocol being used in Germany. Information in these links is for your consideration:
Confronting Lyme Disease: What Patient Stories Teach Us (IPPY Award Winner - Health/Medicine/Nutrition) (Paperback) by Karen P. Yerges (Author), Rita L. Stanley (Author)
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TREATMENT ORIENTED BOOKS:
This book, by an ILADS member LLMD, might hold many answers and suggestions for you:
Lyme Disease and Modern Chinese Medicine (Paperback) by Dr. QingCai Zhang (Author), Yale Zhang (Author)
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[ 29. July 2008, 07:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
kelly, welcome; so glad you found us!
wow, i feel so sorry for all you have been going thru for 11 years!!
keebler sent you a lot of good lyme info. i'll just include treepatrol's and my direct links for NEWBIES INFO for you to check out.
mine now has a table of contents as of this past week!
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
see my newbie package info; click on link at bottom of my package. @ http://tinyurl.com/58eyou ****************************************
kelly,
please send me a PRIVATE MESSAGE, it's 2 people standing together icon, and show the name of the llmd you are going to in NJ.
i'm 1 of dozen folks here who have nationwide llmd lists, and we help folks find good llmds.
want to make sure you are going to one, and NOT an infectious dr. who do NOT believe in chronic lyme and do NOT treat only 3 weeks or UNDER! thx *********************************************
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