The project took an extraordinary amount of time. The genetic structure of Bb unexpectedly complex.
Resistance: It is hard to know if Lyme spirochetes are resistant to antibiotics or not. There is no way to culture the bacteria and test for this. It is known that in vitro (in the test tube) a germ may appear resistant to an antibiotic, but when the antibiotic is administered at super high doses it is able to kill the organism. This begs the question: Do some patients only respond to Rocephin when it is administered at high doses for prolonged periods of time?
Recently, a patient of mine who appeared to have intractable Lyme neuroborreliosis--having failed Rocephin and Zithromax was admitted to a local hospital for pneumonia. In the hospital she was given an intravenous antibiotic called Zosyn. Zosyn is a third generation penicillin with an additional ingredient to protect from the effects of penicillin resistance. Within just a few days the patient had a response which was nothing short of miraculous.
Unfortunately, The only IV antibiotic on the IDSA list is Rocephin. The LLMD list of intravenous therapies for Lyme is expanded, but still limited. Perhaps in jurisdictions which give LLMDs more latitude--- (Connecticut, Rhode Island and California), other IV therapies should be tried.
The incredible wet mount exam: Numerous blood wet mounts of tick borne disease patients have now been studied. Four results have been found repeatedly.
1) Small motile gram negative bacteria, outside the cells are seen frequently. These unknowns may be the BLO, Bartonella like organisms described by other physicians. These bacteria respond to treatment with Bactrim, quinolones like Cipro, Rifampin and other similar drugs.
2) Crescent shaped organisms. These organisms do resemble Toxoplasmosis, which they are not. The seem to respond to therapy based on Malarone.
3) Elongated, larger structures are frequently seen. Very strange. These are thought to be parasites, worms--microfilaria like. These entities seem to respond to Tindamax based regimens. It has been suggested that Ivermectin may be effective but I have little experience here.
4) This is the finding which intrigues me the most at this time. White blood cells are observed with swarms of intracellular organisms. This resembles Ehrlichia or related organisms--but no positive ID has been made. It may be that Zithromax and Rifampin are effective here. I have just begun to do before and after analyses.
In many patients with neuroborreliosis syndromes the contribution of the BLO is very significant and must be considered. I apologize for old entries in which I questioned this issue.
One problem is that many non ill patients also show swarming gram negative bacteria in the blood as seen in some healthy controls. Here, clinical judgement rules the day.
Revisiting an old patient. Two years ago a patient with terrible neuroborreliosis was succesfully treated with a combination of first IV Rocephin followed by the addition of IV Zithromax and finally IV Flagyl. According to his recollections it was the IV Flagyl which helped him dramatically improve. Both oral Flagyl and oral Tindamax had not been helpful. This patient stabilized on long term oral antibiotics. After some time he was "lost to follow up." He stopped all antibiotics.
He has now returned with a full relapse of florid neuroborreliosis. He has been treated the same way. Rocephin during the entire course--Zithromax adding for a second phase of the course --and finally IV Flagyl added to the mix. He has improved with the first two drugs but is only 60% better after three and on half months. Today I ordered the Flagyl. He told me: " Doc, now I am going to turn the corner." I hope so. I have seen this result in other patients as well. The Flagyl is administered as a once daily dose of 500mg.
13 comments:
I just want to add some comments since you are now mentioning anti-parasitic drugs. This is really a story about the dangers of self-medication: back in the day when I was unable to get proper treatment with antibiotics, I had periods with so much paresthesia that I was unable to sleep or function at all. I was literally going crazy and felt completely and utterly lost. For lack of better options I purchased a bottle of benzyl benzoate - an over the counter liquid, topical, antiseptic insecticide. The instructions were to apply to dry skin - and only a couple of times. I applied as directed, and the burning sensation from the liquid was quite astonishing. It seemed to work - at least for a few days, but then the paresthesia returned just as bad. I then went on to apply the liquid to damn / wet skin, every day, twice a day for several days - including areas with thin skin such as lips and eyelids etc... Completely crazy of course, but that's the state you get to with this disease. The burning sensation was still preferable to the paresthesia. I think it was about 4 or 5 days into this that I suddenly got excruciating pain in the heart region. I immediately stopped the application, and washed off all remains of the liquid. For two days I thought I wouldn't wake up again when going to sleep - but then it started improving a little. It took almost 3 weeks for the pain to completely disappear, but interestingly all paresthesia instantly ceased as well. For at least a month and a half afterwards, I felt bruised and battered but without significant paresthesia.
The problems did return eventually, at which point I tried Permethrin (not very effective), and Ivermectin (seemingly extremely effective - but I only tried it once). Almost at the same time I was finally diagnosed with something "real" - severe hyperthyroidism. The doctor told me that such messed up thyroid levels would have taken many months to build up. After taking metabolism drugs for a few months, my thyroid levels normalized, and thyroid anti-bodies dropped sharply. I then went untreated for about half a year, and when measuring again the same problems were re-emerging. This time I asked for antibiotics instead of thyroid drugs, and sure enough - after several weeks of Doxycycline the antibody levels dropped and the hormone levels normalized slowly. This cycle has now repeated several times: I quit antibiotics, thyroid anti-bodies shoot up, after a while the metabolism hormones start to get unstable, and then a full relapse occurs. Even as a layman it seems clear to me that antibiotics is doing something that helps!
I am currently rotating Clarithromycin / Plaquenil and Flagyl. Whenever I get paresthesia, Flagyl seems to be the "quick fix". I was never diagnosed with Bartonella or Babesia, but tested positive for Ehrlichia / Anaplasma, Chlamydophila Pneumonia, Borrelia Sensu Stricto with suppressed CD57, elevated antinuclear antibody ANA and several different antibodies against the thyroid gland (MAK, TAK, TRAK).
Uff, thank God you are still there Doc!!! I was worried not reading you!! And precisely you are touching a topic I really needed to know about, to learn, to analyze, to consider; thinking, does antibiotics really work? does Flagyl plays an important role here? Your info is always beneficial to so many. Thanks a lot! And thanks to "slorabas", for his comment too, it is part of that answer I was searching for...
May God give you lots of good help so you can keep on caring for us!
THANK YOU!
dear lymemd
I am afraid that I have written this before , but with all the information from a rather big 2populatio" it should be possible to make governement research loabs take an interest.'
Gale
You are back!
Thank you!
Thank goodness for you, LymeMD! I'd like to send a personal email to you. How do I do this? Thanks!
Regina (regella@rocketmail.com)
I was on IV Flagyl for 9 months and it helped me tremendously. At first, I had a bag 5 days a week. Then after 3 weeks we were able to start tapering back. Ended up getting a bag 2x a week. It cleared up my stabbing brain pain, allowed my intestines to start working again, cleared brain fog and got rid of the tingling and burning in my arms, hands, legs and feet. During administration of the flagyl, the Lyme was still undiagnosed. But my huge improvement while on it led the doc to believe I had chronic Lyme. He was correct. :-)
Hi Doc.
I find this interesting as i am currently on an intensive protocol that is integrative medicine and includes IV Zithromax and IV Flagyl. The Flagyl is 750 mg 2x day IV and is what is helping me most I feel as well. The first 7 days were horrible and herx reaction strong but each day i was able to gain ground on the herx and am not feeling like a corner is turning.
I have had many tests through Fry Labs as well showing I have the bugs he sees and I am also doing IV EDTA prior to the IV antibiotics. This seems to be helping a lot with the therapy as well. Thank you for your insight in all ways.. negative or positive as you described in your prior post. This does help embark on dialog that helps problem solve in the end.
How did that patient turn out after the Flagyl was then added and administrated? Your blog ended on the note that they felt that it would help then again.?
So happy you are back! I follow your posts with great interest. Have had Lyme, Mycoplasma, Bart, possibly Babs for the past 10 yrs and only started treatment in 2006.
On Rifampin, Zith, Babs herbs and soon Tindamax so I am following your posts very closely.
Really hope Clongen finds something concrete as I think there is more to this picture than Lyme. Curious what antibiotics they are finding effective.
Thanks again for taking the time to post and share with us!
I do believe that oral antibiotics must be given at a very high dose to be effective and I also think that many people with chronic lyme have those strange worm looking creatures. Dr. B's guidelines for treatment of Stage 3 Lyme has antibiotice at very, very high doses. I have been trying to treat the weird worm creaturest by myself as I am pretty sure I have them. Glad you are back. I did not get Flagyl during IV treatment and I did wonder about that. What do you think of fever treatment, an old treatment used for late stage syphllis that seems to be coming back for Chronic Lyme?
zercath
For a while I suffered from this but then cleared my throbbing brain, let my intestines to start working again, brain fog cleared and got rid of the tingling and burning in my arms, hands, legs and feet. That helped take my priest was as accessible as the one used to treat erectile dysfunction is sildenafil citrate.
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