If you've been dx'd with some form of arthritis-------
In my constant search for ways to get antibiotics (in a state that won't treat Lyme--- Oregon) I came across this:
(Yeah, I have antibiotic-seeking-behavior!)
If your doctor won't treat you for Lyme disease (or for too short a time) this might be a way in the backdoor.
"People with arthritis and who have negative blood tests for arthritis are often told that they have degenerative arthritis. Several recent papers show that the antibiotic doxycycline, helps to prevent joint breakdown in osteoarthritis (2)"
"There are more than 100 different germs that are know to cause arthritis. (3) Lyme disease, from a tick bite, causes horrible arthritis which responds to antibiotics."
Mirkin gives many references in journals. I haven't plowed through them but certainly will. My PCP will often act on 'evidence' from a respected journal if I can find them and present them. (I suspect that he might secretly know that Lyme should be treated for a long time---- but the politics in OR are such that he would be 'reprimanded' or worse.)
So, my theory----- if you can't get in the front door, try other ways. I can't 'grow' acne, so after my Xrays are done for my back I'm sure I'll have osteoarthritis or degenerative arthritis. Beats going the veterninarian doxy way.
What I don't know is how long are those courses will be for arthritis. Maybe not long enough to bother---- but not asked, not answered.
Who is Dr. Gabe Mirkin?
Although I'm always a bit suspicious about doctors who are as, um, prolific as Mirkin----- I also read what they have to offer.
But I adhere to the meaning of this quote:
"Listen to all, plucking a feather from every passing goose, but follow no one absolutely"
@Jackie----- you're so nice to go to the trouble of looking up Oregon llmds.Thank you.
I did the same thing just to see what you had found. I knew (cyberly and personally) a lot of the people and sites. For instance, one of the sites given at Lymenet (which is horrible about keeping that page up to date), was for a support group that has long been disbanded and the owner of it has 'retired' from Lymeland----- most likely due to battle fatigue of trying to help Oregonians. She was doing a tick-drag in the city and environment around where I live at just about the time I moved here. I'd have to see if I saved the results of it---I know she found some infected ticks but knowing the 'climate' here I'm sure nothing came of it. But I'd have to see.
I already belong to an online support group for OR, which has just recently come under the purview of LDA or CALDA or whatever they call themselves now.
I don't know if it's because the underground nature of Lyme here or what but a very large proportion of the people and announcements are about protocols that aren't science based. Before I get jumped on (grin) I'm not negating the protocols that are herbal/supplemental and have tried some of them. I may be going on some in the future. (But they ain't cheap either!)
The fact that a Dr. K in Washington is widely praised among many of the Oregonians and Washingtonians though turns me off. (That just me and I will defend anyone's right to use him.) Or ozone IV or.........
Now here's the sticky part, for me:
There are several doctors (NDs usually) that will treat for Lyme. Being an ND in OR means they can practice without being under the aegis of an MD--- which is progressive I guess in many ways.
But my insurance, based in CA, will not pay for any ND that isn't working with an MD. I did use an ND in CA and he was the one who authorized the years of use of bicillin LA----- which gave me a very nice remission that lasted for several years. BUT he was in a practice that was headed by an MD, hence reimbursement.
Imagine my surprise when I moved here and thought---- easy, peasy! #$^#@%!!!
I'm living on a very fixed and meager income now and can't afford to pay for bicillin which is MY drug of choice. And the foreign based pharmacy where I bought the bicillin no longer ships to the US.
I am on the scent of a few NDs here who will help me out. One even said that if I could find a foreign pharmacy where I could buy bicillin he would train a friend to do the injections (which is what I did before). But I'm afraid of foreign pharmacies for the most part. (The bicillin I used to use was called Extencilline and was in powdered form. I only had to buy sterile H2O and sterile needles. So about a month and a half of twice weekly injections of the Ext. only cost around $40. Quite the bargain!)
That's my sad tale and if I would buy a lottery ticket--- maybe I'd win enough to pay for it all. (grin)
I'm curious as to why the bicillin didn't cure your Lyme. And if it's not curative, why not move on to something else? Was it monotherapy, or did you also take flagyl or something similar to do the 'cyst busting'?
@Jackie---- I'm not a believer in a 'cure' for Lyme. Just wanted to get that out of the way. However I AM a huge believer in people getting a long and wonderful remission by being lucky enough to have found the right antibiotic and/or combos or supplements.
Since there are no tests that can prove either having or not having Lyme------it's all a mystery ---- yet.
A lot of the people I know who were 'cured' or went into remission have to be alert for any signs of resurgence and they usually go back on drug of choice for a while until symptoms go away. But it's usually a short term course.
Perhaps you're different-----and what a joy that must be for you! I'm envious of you and others who never have to look back.
So, to answer your question------ no abx ever did as much for me as bicillin did. Who knows why? I don't. Perhaps part of my Lyme is something that penicillin hits better. I always suspect syphilis although I test negative for that over and over and over.
An ex-husband, after we divorced, informed me that he had been dx'd with tertiary syphilis which he probably had from his swinging '60s days! Gee, thanks a lot, guy! I think he has since deceased.
Getting false negatives on the tests for syphilis is possible as it is for Lyme.
So the doubt lingers on.
I only regressed (Lyme) after I was forced to stop bicillin. Maybe coincidence? It's strange how bicillin is barely talked about in connection with Lyme and yet how many people who have stayed on it for a long time praise it.
I had to twist my llmd's arm to get it. After I found that ND who would rx it I introduced the two (in a sly twist of Lyme) and my llmd said he was fine with that----as long as he didn't have to rx it. (They conferred)
After several years I saw that my llmd started rx'ing bicillin to a lot of his patients. LOL Never did get a commission. :)
If there's one thing I can say for sure about Lyme---- is ya never know!
I don't mean to speak out of line here, since you sound comfortable in your stand-off with Lyme .... but perhaps the Bicillin is killing the active spirochetes that have come out of shelter in the biofilms, but you relapse off meds because the bacteria are still in residence, tho inactive in the 4-6 week cycles I have read of.
But really, if you haven't tried combination abx therapy, you might look into it. That's what got me well. I had Lyme and babesia; babs treatment was a pretty straight shot, then went on to deal with Lyme through cyst-buster meds plus bug-killing meds, so the Lyme is also history.
Don't sell yourself short. You deserve to get fully well. I get that you don't want to raise your hopes, but .... think about it. Have you studied Burrascano's treatment guidelines on the ILADS website? It keeps getting added to, so it rambles, but it's a wealth of information.
Bicillin LA worked well for me, too. My hubby was my primary shot-giver, although a retired nurse friend filled in sometimes. My doc's PA started me on it because I had a lot of gallbladder pain, precluding Rocephin. Because the shots were working, I just stayed on them until the vast majority of my Lyme symptoms were gone. It was just shy of a year, with a couple months of in the middle, probably about 9 months total. I'm still on 3000mg of augmentin XR for the Lyme.
Anyway, it sounds like you definitely have Lyme hiding out in biofilms. I am on Bolouke which is working a little too well on my Babesia biofilms. I am crossing my fingers that it is also breaking up any biofilms with Lyme in them, too. I don't want to relapse in the future, although I know it's possible. Gotta get well first! Have you tried Bolouke yet? You can get it on your own from Amazon.
I am amazed at the price you paid for your Bicillin. I used the pharmacy my insurance required. People paying cash are charged $650 for a box of 10 (a month's worth for me). My insurance allowed about $375 of which I had to pay $75.
I figure that some insurance company needs to start selling inexpensive policies where they cover little to nothing, but provide access to their negotiated prices. The insurance company keeps all the premiums, the patients pay half what they used to, and the providers can no longer rip off the uninsured.
I'd not heard of Bolouke so I started poking around.
The most sites were from dealers/sellers so I tossed them. (I do that as a matter of course whenever looking around the Net.)
But then I realized that another name for it was lumbrokinase.
Earthworm powder. It's not the 'earthworm' factor but rather the fact that I'm on Coumadin/warfarin for life now and Bolouke would be dangerous for me to take since I'd be taking two blood 'thinners'.
Many sites claim it's safe with Coumadin (mostly sellers or blogs) but I prefer to err on the side of caution.
PubMed had only a couple of articles re: blood clots and lumbrokinase. One stated:
"we found that lumbrokinase, an extract from Korean earth worms, has a strong in vitro fibrinolytic effect without the presence of plasminogen and significant in vivo thrombolytic effects of lumbrokinase in a rat human-clot-induced cerebral embolism model."
Since you (and many others) don't have to worry about the addition of lumbrokinase I hope it helps you and will look forward to hearing about it from you in the future.
Grapefruit Seed Extract is a Powerful In Vitro Agent Against Motile and Cystic Forms of Borrelia Infection
Grapefruit Seed Extract is a Powerful In Vitro Agent Against Motile and Cystic Forms of Borrelia Sensu Lato Infection
Brorson O, Brorson SH.
Lyme borreliosis , caused by B. burgdorferi sensu lato, may lead to long-term tissue infection, which may be difficult to cure. The outcome of Lyme borreliosis is highly dependant on the antibiotic treatment . The observation of the ability of B. burgdorferi sensu lato to convert (and reconvert) to cystic forms [3–5] may explain why the infection sometimes is persistent and reactivating.
Therefore, it might be important to eradicate all germative forms (not only the motile form) of the bacterium to obtain a proper treatment for Lyme borreliosis. Grapefruit-seed extract (GSE) contains bioactive flavenoids (e.g., hesperitin, resveratrol, and naringenin) and has been shown to possess anti-microbiological effect against bacteria and fungus [6,7]. Many studies indicate that GSE is a substance whose therapeutic effect ranks equal to or better than other known anti-bacterial agents.
Conclusion: The highest GSE concentrations made the bacteria and cysts disappear completely, leaving only small uncharacteristic fragments; at lower GSE-levels the membranes showed herniation and disruption, and the contents had leaked out. The MBC was strongly dependent on the length of the incubation. GSE was very active even for very short incubation times, in agreement with previous results .
The MBC obtained by DFM (dark-field-microscopy) for the motile bacteria agreed well with the TEM results. Presence of GSE reduced the conversion from spirochetes to cysts when the susceptibility testing was performed in distilled water.
This study was performed in vitro and further studies are needed to demonstrate eventual effects in vivo. From our results it will be rational to test the hypothesis that a combination of GSE and antibiotics will be efficient in the treatment of resistant Lyme borreliosis."
[PubMed only had the title but I found the abstract.]
I realize this was in vitro----- but.......
Did you or anyone else try tinidiazole? Supposedly it doesn't have the bad side effects that Flagyl does.
I tried Flagyl twice. The side effects or herxes were way too much for me to take---- and I've pumped through a bunch of others from other drugs.
Flagyl also gave me my one and only episode of Lyme Rage. I was propped up against a wall waiting for an rx, I had been on F. for about a week. All of a sudden I had this urge to hurt someone!!!!! Anyone! I'd never before or since felt that but knew that some people got Lyme Rage as a side effect from treatment.
Fortunately I knew what was probably happening and got the h*** out of the store an back to the car. That was my last time for Flagyl. Ever.
Interesting reaction you had to Flagyl. My LLMD is an all-antibiotics-all-the-way kind of doc .... so GSE didn't come in to the picture.
I'm very sensitive to all sorts of meds and stuff, but the Lyme treatment was very straightforward for me. I never felt worse on meds than I did before them, and I just gradually improved. Everybody's different, that's for sure.
My Bolouke says not to take it with any blood thinners, so I am surprised that sellers would say it's okay. Coumadin has quite a long list of other things that can't be taken with it. Usually people are only on it short term. Are you expecting to only be on it short term, too?
I found a fascinating article on biofilms that I will post on its own thread. I encourage you to look through it, especially since you seem good at finding relevant articles. (Bring them on! You're a researcher after my own heart!) :)
The article was written by a graduate student a few years ago, and she does a good job of referencing the various studies and conclusions she quotes. Everything she describes is consistent with the collective experience of late stage Lyme patients... that many (not just some) bacteria can live for long periods of time in biofilms, re-emerging from time to time to spread to another location or to become active in the body again. It explains how people who seem to keep getting a certain infection over and over again (such as little kids with recurring ear infections) aren't actually getting reinfected. They're just experiencing the re-emergence of an infection that the last round of antibiotics failed to fully kill. Inside a biofilm the bacteria have almost a hive mind. One theory says up to 300 different bacteria & viruses can live in one biofilm. It's disturbing and fascinating at the same time.
The article is quite long, and I cannot vouch for all its accuracy, but it sure makes a lot of sense. I do recommend you take the last portion with a grain of salt. The author is a proponent of the Marshall Protocol for treating long term infections. Marshall believes that conditions like sarcoidosis and autoimmune disorders are really long term infections that we just haven't found yet.
His beliefs on using multiple long term (2-5 years) low-dose pulsed antibiotics and avoiding vitamin D intake are controversial. However, there are many people who say this method is the only thing that helped them, including the author of this article. She says that after many years of Chronic Fatigue Syndrome (ME/CFS), the Marshall Protocol is the only thing that helped her and allowed her to have a life. Regardless of whether you believe in the Marshall Protocol or not, the article is a very good treatise on biofilms. It helps me understand how taking Bolouke basically triggered acute Babesia symptoms in me. It released a bunch of Babesia parasites into my bloodstream at once.
I completely respect that every Lyme patient has to determine what's best for themselves. Not everyone is cured from late stage illness. But if I could offer my thoughts on your reactions to some meds... I have found that when I have a strong herx on a medication (an intensification of symptoms as compared to side effects), I find that the medication eventually does a good job of improving my symptoms. I have had to back off on more than one thing when I reacted too strongly. In two different cases, it took a month to get back to par. But when I took it really slow and ramped back up, I got noticeably better.
I am guessing that when you took Flagyl and felt strong Lyme rage that the Flagyl was working against some Lyme in the emotion-management portion of the brain. While it must have been a scary feeling, could you consider taking a smaller dose less often in order to avoid the big herx, but yet continue to take it? A strong herx, which can include a new/scary symptom means the drug is working to kill the bugs. Hanging in there to get past the herx nearly always pays off.
I know someone who tried Rocephin after years of Doxy failed to cure her, and she said all her lymph nodes swelled up. She grew very concerned and concluded that she'd had a bad reaction to Rocephin and swore it off forever. Unfortunately, she's still sick. I have since read that lymph nodes swelling up is not an uncommon herx on Rocephin. Dead bugs and toxins were overloading her lymph system. If she'd been able to adjust her dosage and help her body detox, she likely could have continued and gotten better.
I am always saddened to hear of people who relapse, both for their sake as well as my own hopes to avoid that. For someone with a long term infection with neuro symptoms and coinfections, relapse is a very real possibility. I am in that category. But I am still taking the approach that I want to eliminate it, not just beat it down for now. Who knows if I'll be able to say this years from now if I relapse. But I still thought I'd encourage you to consider further treatment. Lyme never goes away, and any improvement is always temporary.
P.S. I took Tindamax for several weeks. Hated it. I felt crummy in general on it, but especially disliked the bad metallic taste in my mouth and the dark tongue it gave me from bacteria overgrowth in my mouth. I couldn't get rid of either and was grateful when I stopped it. I suspect I felt crummy in general on it because it was indeed going after cyst forms in me (also known as L-forms, but not the same as biofilms).
"My Bolouke says not to take it with any blood thinners, so I am surprised that sellers would say it's okay. "
I'm not. :) That's why I'm such a bulldog about searching out sites that post inaccurate and sometimes dangerous information on the Internet. The FTC and the FDA are seriously understaffed, even more so recently, and don't have the time to look for all the unscrupulous sellers. They depend on citizens to report them and if enough reports are garnered then they'll look into it.
Not for nothing did I have a web site that was called LymeGate. LOL
I'm on Coumadin 'for life' -because I had two pulmonary embolism events in the last 2-3 years. And I'm not at all happy about it but I'm afraid to go off because there's no alternative to it except for some newly developed anti-coag meds that seem promising but are too new yet for me to jump in and they also haven't found a way to control bleeding without some heroic procedures usually at a hospital.
That makes sense. My mother had one round of a handful of blood clots in one lung, and she was on Coumadin for several months. Because she'd been on hormone replacement therapy for a long time, her doctor concluded the clots were triggered by the hormones, and after lots of monitoring on the Coumadin was told she could stop. She hated taking it. It made all her joints hurt and she bruised incredibly easily.
With your two rounds and no official answers why, I can see why your doctor wants to keep you on it. I read one time that Vitamin E supplements could be almost as effective, but not as harsh and with fewer drug interaction problems. Have you read anything on that?
That article I posted on biofilms talks about biofilms developing in the lining of blood vessels, triggering inflammation and becoming a probable trigger of strokes. Makes sense they could trigger PEs, too.
Researchers and treating physicians are so focused on cholesterol as the culprit in blockages and inflammation in blood vessels that they've missed the role of chronic infections as the source of the inflammation.
"Researchers and treating physicians are so focused on cholesterol as the culprit in blockages and inflammation in blood vessels that they've missed the role of chronic infections as the source of the inflammation."
Yeppers! And what disease confers a LOT of inflammation?? Do you need a hint?
Vit E and other supplements (including nattokinase) are often talked about on the PE forums. There are many reasons not to take them but some people survive taking them and never get another PE. Another 'go figure' instance.
I'm too chicken to go off Coumadin but I also hate Coumadin. Rock and hard place. I know what your Mother went through. Most days it feels as if someone has taken a baseball bat to me. Well, I guess that's a bit of exaggeration---- but when a pain is continual it's additive.
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