I tend to write about unusual cases. Here is a more typical case--a successful one.
A 68 year old female visited me in January 2009. In 2005 she was sero-positive for Lyme disease. Treating was aggressive by standards of the day. She was treated with Doxycyline for 4 months. She recalls that her chief complaints then were rash, fatigue and joint pain associated. After treatment she felt better.
Over the past year she had not felt up to snuff. Pains in the large and small joints had returned. She had neck pains and muscle pains. She had numbness and tingling of her extremities. Her energy level was lower, she had fatigue, headaches, night-sweats, shortness of breath, an unsteady gait, poor sleep and a decline in cognition. She had trouble finding words and focusing.
She had brain-fog. Her sleep was disturbed.
Her exam was abnormal (neurological findings):her Igenex was positive IgG --34, 41: her Igenx B. duncani test IgM, 1:20 was borderline: a Clongen wet mount showed motile bacteria, presumed to be a species of Bartonella. Her SPECT scan showed poor perfusion to the left anterior temporal lobe: her MRI showed multiple white matter lesions consistent with Lyme disease or MS.
After treatment with courses of: Omnicef, Biaxin, Plaquenil, Tindamax, Zithromax, Mepron, Amoxicillin, Tindamax and Rifamin (in various combinations) She feels essentially normal. The treatment to date has lasted about 11 months. She is still on antibiotics and weaning will be done gradually. I suspect she will be on maintenance medications for a long time to come.
Was she symptom free for the period of time from her original treatment until this relapse? Did she have symptoms related to co-infections or was she back to normal after the 4 months of doxy? Good to hear that it works for some we are just left to wonder why it does not work for all.
ReplyDeleteBecause there are bugs that won't die with regular antibiotics but need antiparasitics, dewormers, anti- malarial, etc like Flagil, Bactrim, Ivermectin, Tinidazol, Albendazole, etc. CDC doesn't approve the use of these, meaning leaves the people with no option of totally recover?
ReplyDeleteSo good to hear of a "normal" case; tough illness ah?
The CDC does not approve or disapprove any of these therapies.
ReplyDeleteThe CDC has specifically said (I have been told this personally by Dr.Beard, head of the Lyme division)--the CDC's mission does not include recommendations for the treatment of illnesses. This is a common misconception.
The FDA approves drugs. The manufacturers of the drugs must demonstrate the drugs are safe and effective. The FDA gives "approval" for specific indications for each new drug. These approvals are based on research performed by the drug company demonstrating effectiveness for a particular use.
Once a drug is approved by the FDA doctors are free to use the drug in any way they wish. It is peer review process, IE, medical boards who determine whether such usage meets a "sniff test," called the standard of care. This is a necessary check and balance process.
For example, morphine is approved for the management of pain. If a physician were to prescribe it for a sinus infection this would fall outside the standard of care. If the doctor prescribed it for chronic low back pain this would be another issue.
Twenty-five years ago it was outside the standard of care to prescribe morphine for non-cancer pain. Today, it is routinely prescribed for chronic, non-fatal pain. Its use for back pain would likely be considered acceptable in many cases.
The freedom of physicians to prescribe various concoctions for tick borne disease is not up to the CDC; it is not up to the FDA. Only medical peers can determine whether the therapy is inappropriate, dangerous, unproven or quackery -- and censure the prescribing physician by various measures, including revocation of a medical license.
Simply put: "I have seen the enemy and it is us!"
We are our own enemy and at the same time we have to help our selves, but how? How can we get enough supporting data to prove them wrong or to prove other therapies are also very helpful?
ReplyDeleteAbout CDC you are so right, my bad. The one that doesn't recommend these medicines is IDSA,or at least that it how it sounds to me in their "Chicago Journals", Lyme Guidelines; not that I'm arguing, it is what I understand from their information: "Therapeutic modalities not recommended.Because of a lack of biologic plausibility, lack of efficacy, absence of supporting data, or the potential for harm to the patient, the following are not recommended for treatment of patients with any manifestation of Lyme disease: first‐generation cephalosporins, fluoroquinolones, carbapenems, vancomycin, metronidazole, tinidazole, amantadine, ketolides, isoniazid, trimethoprim‐sulfamethoxazole, fluconazole, benzathine penicillin G, combinations of antimicrobials, pulsed‐dosing (i.e., dosing on some days but not others), long‐term antibiotic therapy, anti‐Bartonella therapies, hyperbaric oxygen, ozone, fever therapy, intravenous immunoglobulin, cholestyramine, intravenous hydrogen peroxide, specific nutritional supplements, and others (see table 4) (E‐III)."
The link is here: http://www.journals.uchicago.edu/doi/full/10.1086/508667?cookieSet=1
I might be misunderstanding the content; anyways, I'm no expert!! I just know some of those medications have helped me recover and might help others...!!!
Big powerful medical organizations are the ones who decide how to treat or what to use... I would like to think there's hope!
ReplyDeleteI'm curious. What does "maintenance" look like? Pulsing low dose? Daily high dose? Quarterly for a week? I assume it is as individual as treatment. But would you mind describing what you recommend for maintenance?
ReplyDeleteHow do the findings on the SPECT Scan influence patient management? I am a lyme patient who has had a normal MRI, with a dominant symptom of ringing and plugged ears. Will a SPECT Scan show something that the MRI didn't?
ReplyDeleteHi LYMEMD!!
ReplyDelete