posted
So, i recently finished up my month of IV ceftriaxone with no real results.
Don't really know what direction my health is going as i certainly am not as bad as i was 1.5 months ago but i have some new, but rather subtle symptoms.
(so that last sentence isn't as confusing as it could be.. i had the worst symptoms of my life, but they subsided right before i went on the Abx.)
Anyhow, i somehow convinced my ID doc to put me on Doxy after the IV treatment.
However she put me on 2 weeks at 200mg a day.
And now she is done with me.
She says i need to talk to the Neuro when i see him again in 1.5 months.
They still think it all may be MS related and its just coincidence i tested positive for Lyme (WB, ELSIA, and Spinal tap).
And i guess its just also a strange twist of fate that 99% of my MS works come back clear.
And that 1% that doesn't could be related to Lyme.
Im not even saying its not a possibility i don't have MS, i certainly could, but i find it curious on how they don't want to attribute anything at all to Lyme.
Anyhow, that's not the issue. Sorry to get into that. Just trying to be thorough.
So, long story short is i have an appt with a LLMD sometime this month. Hopefully.
The wrinkle there is he just finished up his residency and sometime this month he will be 'opening up shop' for himself.
So my issue is i really don't want to be off Abx in the time frame where im off my current Doxy and before i see the LLMD.
And even in the best case scenario there would be a week between, but worst case might be a month (im assuming), of no Abx.
Any ideas?
Posts: 47 | From Denver | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Lyme Disease and Modern Chinese Medicine (Paperback) by Dr. QingCai Zhang (Author), Yale Zhang (Author)
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" again, for the passwords or call Hepapro.
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
I cannot get the direct link to go through, so I've posted the home site from which it came. If you need to see it directly at its own 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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
While you seem to know all this, this article may be good to have in your back pocket if you need it for a doctor. It does not specifically mention MS, however, many myths are dispelled.
www.ilads.org ILADS - of course - has other articles.
-
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.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Halbowitz:
So, long story short is i have an appt with a LLMD sometime this month. Hopefully.
The wrinkle there is he just finished up his residency and sometime this month he will be 'opening up shop' for himself.
I didn't know someone could be considered an "LLMD" right out of their residency. I didn't think that they actually taught much about tick-borne disease in the schools & hospitals.
How did you know that this doctor was considered to be Lyme Literate?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I hope i can answer your questions accurately...
Basically, it went like this...
Sometime last year i passed all tests pointing to Lyme. Even a spinal tap.
So, Kasier, whom i had at the time put me on a 28 day IV PIC of ceftriaxone.
That went rather smoothly but I saw 0 improvement.
I convinced my ID doc to give me Doxy.
This was at the last day or so of the IV treatment.
Begrudgingly she did but only 200mg a day for 2 weeks.
I dont even know If i took that. It being such a short course. I might of. I dont remember
I finished that,one way or another, and saw no improvement.
Then, over the next 6 months or so.. well, until February, i felt almost completely normal.
I thought I had it beat.
My main 'problem' with Lyme is Peripheral neuropathy or maybe paresthesia.
Although some big problems that it caused me were auto immune related.. like pericarditis.
But as soon as i got the IV line that stuff went and never came back.
Yet.
So anyhow, over the past 2 months the tingling has come back, as well as what i would describe
as a 'tuning fork' sensation in my limbs.
The scary thing is that it has spread from my right hand, to my right foot, to my left hand..
to my left foot.
Then anwhyere on my legs, all the way up to the bottom of my spine..
Then random places on my chest.
Its weird though.
I have 3 types of peastesias.
1.) One brought on by vibration that sticks around for hours. Like my right foot, after driving, will tingle for hours.
2.) Random tuning fork vibration. This can happy anywhere. Its like someone is hitting a tuning fork in my leg at a constant rythm for minutes to weeks. In the same place.
3.) Random 'spot' tingling' Where a spot will just tingle then it will go away.
Thank god that 2 and 3 eventually move on.. for the most part.
but 1 never stops. I mean, it may stop tingling if i rest that foot, or my hand, but it will always act up if its 'rubbed' wrong.
So, that's the lay of the land.
I also have other symptoms but Im not sure how much detail you would like me to go into.
I have not been treated for any co-infections in the past but I am now. Purely on a guess from my doc.
I think kaiser said they tested me for these co-infections at my request and the came up negative.
I have another thread going about my current meds.
That thread is why i cam back to this board.
I think my current treatment seems wrong and I need to try and straighten it out.
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