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Post by kuckelkorn on Dec 21, 2017 11:58:20 GMT
Hello everyone,
my name is Enrico and I just wanted to introduce myself to the forum community. I am 29 years old and have been sick with what I believe to be a chronic Bartonella infection since 2011. Primary symptom is chronic bilateral neuropathic foot pain (it took about 4 years to diagnose this as an "idiopathic" small fiber neuropathy). In 2012, chronic visual disturbances and cognitive dysfunction started. Since 2016, I experience a constant feeling of dizziness/vertigo. Tried an ABX treatment for Lyme and Bartonella in 2013 and 2014, with the ABX treatment of lyme disease having no effect at all and the Bartonella ABX treatment (Rifampin, Doxy, Clarithromycine) having a small effect. Seropositive for Bartonella in the CSF, though physicians in Germany don't really know what to do with this result. Currently doing a German variant of classical chinese medicine...if it fails, I want to give the Buhner protocol a try.
Hope to share experiences and have great conversations with you guys!
Regards,
Kuckelkorn
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Post by Admin/ Traveler on Dec 21, 2017 17:36:26 GMT
Hi Kucklekorn!! Welcome to our community!! Do feel free to ask questions and to post on other threads where you have questions or insights you wish to share! I had good success with TCM and treating these infections - but my practitioner had to move out of state to help care for her parents, so I lost my doctor - and there are no others in my area (within a 7 hour drive each way anyway). Do you know if your doctor has read much from Heiner Fruehauf? My practitioner studied some under him and he has written some articles that will help with these infections. Gu Syndrome, Heiner Fruehauf And the following article is on the same 'Gu Syndrome': Heiner Fruehauf - "Driving out demons and snakes" (A fairly appropriate title, if I do say so myself!!) We look forward to interacting with you and getting to know you better!!
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Post by Bleepitybleep on Dec 23, 2017 1:22:57 GMT
Hi Enrico, Do you mind answering if you are taking nystatin?
Your symptoms sound very similar to mine. The biggest symptoms to begin were GI changes, bilateral achilles synovitis and tendionsis & neuropathy over 4 yrs ago. Achilles still an issue, but I'd take that again over the newest symptom. I then added almost a year of dysphaghia/weak esophageal peristalsis, trigeminal nerve & jaw pain. Finally convince a neuro to test me for a tick borne disease (thanks to the help of a DVM - yes, my dog's doctor thought my symptoms sounded like a vector borne disease - DVM had more knowledge about my symptoms than the 30 MDs I'd seen before!). Pos for rickettsia active infection... did 10 days of prescribed doxy and life has never been the same since... far worse! It's going after my c-spine which does have degeneration, some herniation and stenosis, but neurologist & neurosurgeon say my neck doesn't look too bad compared to others w/no pain. Vertigo/dizziness/head pressure (sometimes so extreme!) that are keeping me homebound 90% of the time. Convinced PCP to test me for Lyme- WB was pos and he gave me another 10 days of doxy in September, but dumped me as a patient while on day 3 of doxy b/c "we cannot help your medical needs" (I know they're terrified of the state medical board). Neurologist sees nystagmus still in my eye so I'm back in vestibular PT, but the PT thinks it's tick borne problems causing problems (her family member has Lyme so thankfully she's LL).
Been doing Buhner's protocol + some added supplements/herbs from LLMD. I don't feel confident in the LLMD, though, b/c LLMD has lyme and seems very forgetful (which I understand, but when she forgets 3x in a row to test for all the co-infections we discussed... well, it's hard to keep finding out she didn't do the right blood tests). Plus, LLMD wants me to try ozone even tho I know it's risky (blood clots - someone I know has developed 3-4 blood clots from ozone therapy) and expensive.
The 2nd LLMD I've consulted w/thinks I also have bartonella based on my symptoms. I just don't know which way to turn and my head is so dizzy/achy that it's hard to stay focused.
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Post by elaine on Dec 25, 2017 13:05:32 GMT
Hi Knucklehorn
im just curiious are you under armin He is a big hit in the uk Quite lot of uk lymes go to a hospital there For different Iv treatments Sorry cant remember name of these places of armin labs ?i live in scotland also a few uk folk are using Makewell lyme products a german company sells these They seem to help
happy christmass
elaine(scottishlymelady)
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Post by elaine on Dec 25, 2017 13:06:52 GMT
i have nystatin bleepy bleep
What were you given it for? It was given to me for oral thrush.
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Post by elaine on Dec 25, 2017 13:11:10 GMT
iv noticed not using lions mane and gou teng My brains going garbled again As it my speech and congnitive It was helping llmd said no to these herbs and yes to core lyme
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Post by michele on Dec 26, 2017 14:33:10 GMT
Welcome!!
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Post by Admin/ Traveler on Dec 28, 2017 16:59:58 GMT
Hi Enrico, Do you mind answering if you are taking nystatin? Your symptoms sound very similar to mine. The biggest symptoms to begin were GI changes, bilateral achilles synovitis and tendionsis & neuropathy over 4 yrs ago. Achilles still an issue, but I'd take that again over the newest symptom. I then added almost a year of dysphaghia/weak esophageal peristalsis, trigeminal nerve & jaw pain. Finally convince a neuro to test me for a tick borne disease (thanks to the help of a DVM - yes, my dog's doctor thought my symptoms sounded like a vector borne disease - DVM had more knowledge about my symptoms than the 30 MDs I'd seen before!). Pos for rickettsia active infection... did 10 days of prescribed doxy and life has never been the same since... far worse! It's going after my c-spine which does have degeneration, some herniation and stenosis, but neurologist & neurosurgeon say my neck doesn't look too bad compared to others w/no pain. Vertigo/dizziness/head pressure (sometimes so extreme!) that are keeping me homebound 90% of the time. Convinced PCP to test me for Lyme- WB was pos and he gave me another 10 days of doxy in September, but dumped me as a patient while on day 3 of doxy b/c "we cannot help your medical needs" (I know they're terrified of the state medical board). Neurologist sees nystagmus still in my eye so I'm back in vestibular PT, but the PT thinks it's tick borne problems causing problems (her family member has Lyme so thankfully she's LL). Been doing Buhner's protocol + some added supplements/herbs from LLMD. I don't feel confident in the LLMD, though, b/c LLMD has lyme and seems very forgetful (which I understand, but when she forgets 3x in a row to test for all the co-infections we discussed... well, it's hard to keep finding out she didn't do the right blood tests). Plus, LLMD wants me to try ozone even tho I know it's risky (blood clots - someone I know has developed 3-4 blood clots from ozone therapy) and expensive. The 2nd LLMD I've consulted w/thinks I also have bartonella based on my symptoms. I just don't know which way to turn and my head is so dizzy/achy that it's hard to stay focused. Hi Bleepitybleep - I was hoping that Kucklekorn, who you were asking these questions of, would check back soon. But until they do, I thought I'd see if I could help you out some? I think this article may prove to be helpful, although a lot of trying to determine which infection(s) we have is nothing more than trial and error with treatments and waiting for signs of a herx to "prove" that's the infection(s) we have and need to treat. Anyway, here is that article: [a href="http://conniestrasheim.org/blog/2017/3/6/ a-deep-look-at-the-symptoms-of-six-major-lyme-related-infections"]A deep look at the symptoms of 6 major Lyme- related infections[/a] I also wanted to be sure that you knew you could use Buhner's protocols on your own as well. There are groups out there that will help, and you can get help here as well with it. In case you didn't realize, you can buy his books for these infections and read them yourself as well. If you wish to do this, I would encourage you to shop around for the best prices, or look in your library! Also, do be sure that you are detoxing well. We can be of help with that if you are unsure how to start or what to add if needed.
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Post by kuckelkorn on Jan 14, 2018 14:52:18 GMT
Hi all,
sorry for the late reply, I have been very busy lately due to relatives staying over during christmas and new years.
No, I am not taking Nystatin at the moment, but I was during my ABx treatment.
I am not with Armin Schwarzbach, because I honestly think this guy is a fraud.
Regards,
Kuckelkorn
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