It really sounds like you need some inspiration and talk with some veteran lyme literate patients, as well as a top lyme literate physician by the sound of it. You need to be aware that Lyme literate physicians aren't created equally... Just because one treats longterm with antibiotics doesn't make them lyme literate.
There's so much more to be educated about
chronic lyme these days than just hawking antibiotics at the disease. Biofilms, round body forms(cysts), persister cells, hard to erradicate coinfections lyme Babesia and Bartonella.
As time has progressed, antibiotics aren't working like they used to compared to the days it first appeared on Lyme Conneticut. The borrelia bacteria has evolved and tick have started to carry more pathogens(coinfections) inside of them, not only the spirochetes, but viruses, parasites(Babesia), and other pathogens we're just starting to learn about
FL1953.
I hope you're aware that some pathogens like Babesia are starting to become resistant towards drugs like Mepron and Malarone, some of the top LLMDs reported about
this, you may have to try other antiparasitics.
sebreg said...
Yeah, 18 months is a long time. It'd be one thing to not herx but if you saw improvement at least you'd have an indicator the meds were potentially doing something positive.
18 months isn't a very long time when you're talking chronic lyme, especially if you're just treating with oral antibiotics. I've been treating for 8-9 years with oral antibiotics, I didn't see much breakthrough until after 2-3 years of treatment... Inflammation kept getting worse, so did a lot of my other symptoms. As the old saying goes, everyone gets worse before they get better when treating chronic lyme.
If you've contracted viruses, along with a few other coinfections, it can take some time for these viruses and coinfections to die down when your immune system is on overload.
SeanIRL said...
At no point over the past year and a half, despite being on pretty high doses of multiple antibiotics did I experience any herx reaction. I also didn't experience in change of any major symptoms.
The first 3-4 years, I really didn't get what people were saying when they herx. Especially when I was so sick in the early stage of treatment, I'd feel some twitching here and there, just like you mentioned, but not the crazy herxing everyone tells you about
.
Let me educate you on something with herxing... It can be different for everyone, especially when it consists of female vs male. For whatever reason, hormones, women being built differently, women herx more violently than most men.
For the first 3-4 years, I didn't feel much of a reaction when being on antibiotics. As I progressed with oral antibiotic treatment throughout the years, learned more about
treating biofilms. I wasn't till the 4th or 5th year of treatment, I just started to feel what antibiotic works and what doesn't. What I mean is, if I feel better and more energy when being on an antibiotic, I know it's working. As well as twitching and weird sensations in my body. The way I can tell I'm herxing, is I see twitching in my muscles, as well as an occasional weird pinching sensation in my head. On rare occasion, I'd get a feeling like my legs were going to give out.
As time went on, by the 6th or 7th year of treating... I'd really start to feel the herxing sensations some people talk about
, as well as feeling the effects of being on biofilm busters such as Stevia and Xylitol. But my herxing was never the way it was portrayed in the film Under Our Skin, like what the women felt.
And to be honest with you, some of those women, like Mandy Hughes used high doses of IV antibiotics, I would expect the herxing to be more intense than oral antibiotics due to the penetration IVs have over orals.
SeanIRL said...
I wish you all the best in your treatment, but for me - antibiotics isn't doing anything for me and clearly won't do anything.
You need to keep pushing on... 18 months isn't anything when treating chronic lyme, especially with just oral antibiotics. Maybe if you were on IV antibiotics for a whole year, that's when I'd say that's a decent amount of time where you'd see some type of breakthrough, but if you're just treating with orals, especially just traditional antibiotics... Yeah, you need to give it more time.
A lot of breakthroughs are being made with new persister cell antibiotics through the top lyme literate physicians such as Dr. J and Dr. H... You don't seem too educated with biofilms nor persister cells, because neither of these topics were mentioned in your post. The top Lyme Literate Doctors are saying this is why chronic lyme is so hard to treat and why so many lyme patients are relapsing.
Sure you're treating with 3-4 different antibiotics that may hit different coinfections, but if you're not using particular antibiotics to break
open round body forms, as well as herbs such as Stevia or Xylitol to get through biofilms, and effective persister cell antibiotics like Dapsone, Bactrim, Disulfiram, Daraprim, Pyramazide, etc... Maybe even some of the essential oils like oreganol or cinnamon bark. You're not going to get anywhere with treatment.
There's many lyme patients that have failed a lot of traditional antibiotic protocols like you and it wasn't until they tried some of Dr. J and Dr. H's persister cell protocols, it became a major stepping stone for them. Dr. H talked about
this many times in his presentations.
For a lot of people Flagyl and Doxy helped them early in treatment... But if those didn't help and traditional antibiotics aren't working, you maybe need to try a heavier antiparasitic antibiotic protocol, something like. Tindamax+Zithromax+Plaquenil and maybe Mepron or Malarone.
I hope you're aware that there's been a lot of reports by some of the top Lyme literate doctors that Babesia is starting to become resistant to Mepron and Malarone....There's many other antiparasitics that have helped people like Daraprim, Clindamycin/Quinine, Lariam, Coartem/ Riamet etc... Like some of the antiparasitics that Brian Rosner mentions in his blog. Like Alinia, Ivermectin, Albendazole...
http://lymebook.com/ivermectin-albendazole-diethylcarbamazine-alinia-mimosa-pudicaIt's not only been found that borrelia hides in nematodes, but some of these antiparasitics like flagyl and tindamax have been found to work quite aggressively against biofilms.
https://www.prnewswire.com/news-releases/lyme-bacteria-hides-inside-parasitic-worms-causing-chronic-brain-diseases-300270742.htmlI think you need to use the search function on some of these Lyme forums, dig deeper for answers, do some research, instead of hoping for some active members to answer your questions. Because I can tell you this much, you're not going to find the answers you're always looking for doing that way. There aren't always veteran lyme members that active on a lot of these lyme forums.
Watch some of Dr. H's presentation videos on YouTube on persister cells...
https://youtu.be/bzu0weofvm8?t=1h38m12ssebreg said...
I'm sorry to hear that. Have you looked into any other potential causes for your symptoms? mold?
Yeah... The mold theory that everyone talks about
is highly exaggerated... Same thing happened when people were dieing from AIDs, that if they moved or addressed the mold problem in their home, that would help reach remission. There's celebrities who even bought into this like Greg Louganis and were taken for a ride, both him and his money...
The same reason AIDs is hard to reach remission, which is persister virus cells, is the same reason what is keeping a borrelia infection chronic. Disulfiram, a persister cell drugs, has been shown to work both for AIDs and Lyme Disease, waking up dormant cells and killing them.
Address your coinfections with the right drugs, the biofilms and persister cell forms too, and you'll start to see progress. Again, listen to what the top LLMDs are treating with these days and ignore a lot of the other mumbo jumbo that's talked about
on the forums...
One last thing, be sure to take a heavy dose of Probiotics, as well as your share of important vitamins like Vitamin D, Vitamin B12, and Vitamin C to help boost your immune system. C Diff has basically been cured now with fecal transplants, but there's still a lot of hospitals across the country that don't know this and use fecal transplants as treatment. Probiotics are a must to keep C Diff at bay, as well as other things in your body.
Be sure to take baking soda water drinks for detox, help tolerate the antibiotics longterm. As well as working out, even if it's just jogging.
Post Edited (Charlie55) : 10/19/2018 6:45:32 PM (GMT-6)