Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
It was a good conversation.
I'm responding to meds but as I mentioned in another thread doc thought side effects ( candida and stomach stuff) were getting out hand, so I'm stopping for a couple days, a week, a couple weeks -- however long to get this stuff under control.
I complained about my symptoms. I said they were very unique, and I could never figure out what coinfection I had. They said au contraire, your symptoms are so totally not unique in any way.
No? Really? I said. Nope, they said, you're quite typical.
Since this person has seen thousands of Lyme people I was reassured. I thought NO ONE had anything like what I was describing and I must have some special kind of Lyme. Apparently I have Typical Lyme.
We talked about IV meds. LLMD was not keen. Said that since I wasn't in the state it was going to be a big problem and they could not offer proper support. If I could get someone local to order the insertion and arrange for support it would work out better. And also they'd seen many people improve all the way to better on oral meds. We'll see. But anyway, still not doing IV.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jordana,
All the posts of yours that I've seen where you've discussed symptoms and voiced that you thought they could not possibly be lyme / TBD . . . had me thinking the same as your doctor. All you've posted has seen to be exactly in line with the complexity of lyme / TBD.
I wonder if the perplexed nature of this is that, often when you've posted that "lyme does not do that, they say" you have mentioned a search or article at PubMed or some university setting.
What you have read about lyme has very often been from those who are not at all LL and not at all "educated" in the matter in the manner of ILADS' conferences, programs, etc.
That might help shed some light to consider just which "sources" or "experts" article that have presented a simplistic view and an IDSA mouthpiece to discredit those with lyme and the very existence of chronic lyme.
Those same IDSA strongholds rarely - so very rarely - also consider the different forms of lyme as well as the coinfections.
When you see an article, research the author, their affiliations, training, etc.
It's just more efficient to learn about lyme from those who are the true experts in the field, though. Start with articles, videos and books suggested from
Tom Grier is a microbiologist who has written excellent articles, too.
And Stephen Buhner's books are not just about herb but also about how lyme / TBD work against / disrupt the body. So much about how lyme affects body functions.
His books made so much sense about what had seemed so very strange about my body because other doctors kept saying either "no problem" or that I was too complicated to even sort it out.
When you research a symptom, cross search also with "borrelia" and also with some of the top LLMDs last names to see. Those ILADS LLMDs and LL NDs who have authored book would be the names to start with for any cross search. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hope your tummy troubles go away soon and you can keep going in the right direction!!!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
This article is essential reading to gain an understanding of not just when to consider lyme
but also what it's like to HAVE lyme.
This can be frightening, yet it is informative -- and then empowering so that symptoms and patterns are not so scary -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yeah, I got really sidetracked with the co-infection thing because I just could not BELIEVE, like the rest of conventional medicine, that this could all be Lyme. And at last testing, my immune system is somewhat normal and in fact all my numbers are normal as I've said, so there was no complicating factor that would make it harder for me particularly to fight this infection.
I thought I had a million co-infections. Maybe not. I thought I had MS, ALS, some other complete failure of the body -- maybe not.
Doc says I'm a mess, but I'm fixable; mostly referring to my gut, which is not "leaky", it's inflamed and dysmotile. Good to know!
Almost a totally different perspective than the one I had, which was that my gastro stuff wasn't that important and the co-infections were causing all this neuro terror.
Interesting.
Posts: 2057 | From Florida | Registered: Feb 2015
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