posted
I heard from my insurance company recently. I have been on IV rocephin and other abx plus diflucan.
An appointment has been made for me to see an infectious disease doc by the director of the insurance company.
I need prayers.
I also would like to take in documentation that shows IV rocephin and abx are what we have to help with lyme disease.
I also would like to take in documentation that shows that testing is inaccurate. (I did test positive with Igenex but I have had doctor's ignore this lab in the past and deny me treatment because Unilab's blood test came back negative.)
If you have these documents available, would you please email them to me so I can print them out.
I am still low fucntioning and just making sure I have eat 3 meals a day is on the top of my list.
I also am able to type things out while I lay in bed but being able to take things in still needs improvement.
I do have a dx by a lyme specialist and am seeing a lyme specialist out of state.
I came down sick in Oct. 2001. Started treatment and got a dx in Jan/Feb 2003.
Moved to the new state in Oct. 2005. I have been very thankful for the IV rocephin I have been receiving and the medication that has been paid by the insurance to date.
I do believe it is helping. When I have tried going off abx, I am back to lala land and being bedridden in a very short time.
I did copy the Lyme Times information re: IV Rocephin for my primary doc in order to help her help me get the IV rocephin.
But, the bottom line is she is not experienced with lyme disease and has never seen a case like mine.
She is from a state that does have lyme disease but said it was flu, abx and then all was fine.
They must have caught the disease early when she was doing her internship.
Note: the primary doc did say she might be interested in attending a conference on lyme disease to learn more. I tried to print out the information on the upcoming conference for her but did not succeed. I am not sure why at this time. It was from the LDA web site.
I also told her about Turn the Corner Foundation that will train her at no cost to her. That is when she said she might be interested in going to a conference first.
[ 29. July 2006, 07:39 PM: Message edited by: Happy Camper ]
Posts: 89 | From AZ | Registered: Mar 2006
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Easy to understand question and answer format. It can be downloaded.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Tetracycline therapy for chronic Lyme disease.
AUTHORS: Donta ST
AUTHOR AFFILIATION: Boston University Medical Center and Boston Veterans Affairs Medical Center, Massachusetts 02118, USA.
SOURCE: Clin Infect Dis 1997 Jul;25 Suppl 1:S52-6
ABSTRACT:
Two hundred seventy-seven patients with chronic Lyme disease were treated with tetracycline for 1 to 11 months (mean, 4 months); the outcomes for these patients were generally good. Overall, 20% of the patients were cured; 70% of the patients' conditions improved, and treatment failed for 10% of the patients. Improvement frequently did not take place for several weeks; after 2 months of treatment, 33% of the patients' conditions were significantly improved (degree of improvement, 75%-100%), and after 3 months of treatment, 61% of the patients' conditions were significantly improved. Treatment outcomes for seronegative patients (20% of all patients) were similar to those for seropositive patients. Western immunoblotting showed reactions to one or more Borrelia burgdorferi-specific proteins for 65% of the patients for whom enzyme-linked immunosorbent assays were negative. Whereas age, sex, and prior erythema migrans were not correlated with better or worse treatment outcomes, a history of longer duration of symptoms or antibiotic treatment was associated with longer treatment times to achieve improvement and cure.
These results support the use of longer courses of treatment in the management of patients with chronic Lyme disease. Controlled trials need to be conducted to validate these observations.
-------------------------------------
Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms.
SOURCE: Int J Epidemiol. 2005 Jul 22; [Epub ahead of print]
Cairns V. et al
Consultant Statistician, Am Rothlauf 9, 61476 Kronberg, Germany.
BACKGROUND: This meta-analysis compares the prevalence of fatigue, musculoskeletal pain, and neurocognitive difficulties in patients who have had Lyme borreliosis (LB) and control subjects without LB. METHODS: Titles and abstracts in PubMed were reviewed for studies with data on the symptoms listed above that compared patients who had had LB with controls from the general population. Five studies with 504 patients and 530 controls were included in the meta-analysis. RESULTS: The prevalence of symptoms was significantly higher in the LB patients, with P-values between <0.00001 and 0.007 for 8 of the 10 symptoms in the three categories listed above. The higher prevalence of certain neurocognitive symptoms but not others, in the same pattern as reported in the literature, is further confirmation of this syndrome. The pattern of symptoms appears to be different from that seen in fibromyalgia, depression, and chronic fatigue syndrome. CONCLUSIONS: This meta-analysis provides strong evidence that some patients with LB have fatigue, musculoskeletal pain, and neurocognitive difficulties that may last for years despite antibiotic treatment.
PMID: 16040645 [PubMed - as supplied by publisher]
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
And some more, curtesy of Tincup:
LONG TERM TREATMENT FOR LYME DISEASE
ILADS Guidelines quotes:
The longer one is ill with Lyme, the more likely the illness will be more severe and treatment resistant. The same studies that demonstrated lymphocyte inhibition and lysis from high spirochete loads also demonstrated increased negative effects on the immune system the longer the spirochetes were present. We have seen this clinically, with the ultimate result being full blown Chronic Lyme Disease.
LYME BORRELIOSIS: After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream. This is why even early infections require full dose antibiotic therapy with an agent able to penetrate all tissues in concentrations known to be bactericidal to the organism. It has been shown that the longer a patient had been ill with Bb prior to first definitive therapy, the longer the duration of treatment must be, and the need for more aggressive treatment increases.
TREATMENT RESISTANCE- There is evidence that B. burgdorferi can remain viable within cells, such as macrophages, lymphocytes, endothelial cells, neurons, and fibroblasts. Bb has been shown to evade the effects of beta lactam antibiotics in vitro by sequestering in these intracellular niches. In addition, Bb can coat itself with host cell membranes, and it secretes a glycoprotein that can encapsulate the organism (an "S-layer"). Because this glycoprotein binds host IgM, it is possible that host protein as well as cell membrane hide Borrelial antigens.
In theory at least, these coatings interfere with immune recognition, thus affecting the clearing of Bb, and also cause seronegativity. There are multiple strains of Borrelia burgdorferi and they vary in their antigen profile and antibiotic susceptibilities. It has also been recognized that B. burgdorferi can exist in at least three different morphologic forms: spirochetal, spheroplast (or l-form), and the recently discovered cystic form. L-forms and cystic forms do not contain cell walls, and thus beta lactam antibiotics will not affect them.
Spheroplasts seem to be susceptible to tetracyclines and some erythromycins, yet the cyst has so far only been proven to be susceptible to metronidazole. Apparently, Bb can shift among the three forms during the course of the infection and cause the varying serologic responses seen over time, including seronegativity. Because of this, it may be necessary to change antibiotic or even prescribe a combination of agents.
More evidence has accumulated indicating the severe detrimental effects of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
COURSE DURING THERAPY- As the spirochete has a very long generation time (12 to 24 hours in vitro and possibly much longer in living systems) and may have periods of dormancy, during which time antibiotics will not kill the organism, treatment has to be continued for a long period of time to eradicate all the active symptoms and prevent a relapse, especially in late infections. If treatment is discontinued before all symptoms of active infection have cleared, the patient will remain ill and possibly relapse further. In general, early disseminated LB is treated for four to six weeks, and late LB usually requires a minimum of four to six months of continuous treatment. All patients respond differently and therapy must be individualized. It is not uncommon for a patient who has been ill for many years to require open ended treatment regimens; indeed, some patients will require ongoing maintenance therapy to remain well.
It has been observed that symptoms will flare in cycles every four weeks. It is thought that this reflects the organism's cell cycle, with the growth phase occurring once per month (intermittent growth is common in Borrelia species). As antibiotics will only kill bacteria during their growth phase, therapy is designed to bracket at least one whole generation cycle.
This is why the minimum treatment duration should be at least four weeks. If the antibiotics are working, over time these flares will lessen in severity and duration. The very occurrence of ongoing monthly cycles indicates that living organisms are still present and that antibiotics should be continued. Remember- there currently is no test for cure, so this clinical follow-up assumes a major role in Lyme Disease care. The conventional antibiotics used for Lyme, such as the penicillins, cephalosporins, etc do not kill the cystic form of Bb.
Furthermore, the cyst lacks the usual surface antigens found on the spirochete (these are the markers detected by ELISAs and western blots). This may be another reason for the chronically sick Lyme patient remaining seronegative. There is evidence that metronidazole will kill the cystic form. This fits with the now well known clinical observations that metronidazole can be remarkably effective for many chronic Lyme patients. However, this medication apparently has no effect on intact spirochetes. Therefore, the trend now is to treat the chronically infected patient who has resistant disease by combining metronidazole with one or two other antibiotics to target all forms of Bb. Because there is laboratory evidence that tetracyclines may inhibit the effect of metronidazole, this class of medication may not be as useful as others in these two- and three-drug regimens. Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment.
Monitoring Lyme Disease in the Community - First Sentinel Health Site
Daniel Cameron, M.D., M.P.H.
2) Only 123 patients (13%) presented with a positive ELISA with Western Blot confirmation. 3) The treatment success for an initial presentation of chronic Lyme disease was 80%. 4) The prevalence of relapses was 54%. 5) The one year incidence of a relapse was 19%. 6) The success rate of retreating the first relapse was 85%.
Posts: 7052 | From Colorado | Registered: Mar 2003
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I don't know if I am making the right decision or not but I will be talking to a different local doc tomorrow who takes a different insurance.
It is open enrollment right now for the insurance I have.
I sure hope all goes well and he is willing to work with my lyme doc and with me to do the best he can.
Posts: 89 | From AZ | Registered: Mar 2006
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