I was finally diagnosed with Bartonella yesterday after seeing a Lyme's Doctor in Maryland. I have been sick for 6 years and 7 months and the possibilities of being pain free are almost inconceivable to me after such a long time of this experience. I sat in the Doctor's office and he believed me about my condition and gave me a diagnosis and treatment within 40 minutes of talking to him. I feel in disbelief and excitement simultaneously.
I just want to know, what was your experience when you got your diagnosis? Were you skeptical at all? I am taking the meds and optimistic, but there's that quiet part in me that says---why did all these other 50+ doctors miss this? Take care,
Ms Piggie
Posts: 4 | From Waldorf, MD | Registered: Jan 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The thing to remember is that people who have been sick a long time are going to need longer treatment. Get prepared for that.
Do you have anything besides bart? Lyme? Babesia?
Posts: 2888 | From USA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"I just want to know, what was your experience when you got your diagnosis?"
I danced on the moon for at least a week!
Finally knowing WHY I was so sick was a blessing. Only then could it be addressed!
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"...why did all these other 50+ doctors miss this?"
If you were seeing Maryland doctors, blame Hopkins and the health department- the mules and the sluffs.
Specifically the IDiots in the infectious disease division at Hopkins, who are famous for prescribing anti-inflammatory meds, telling you to get more exercise, and who send you to a psych doc for treatment if you aren't cured with 3 weeks of some of the cheapest antibiotics on the market.
The ones that claim the tests are accurate, when that is far, far from the truth. The ones who boldly promoted a Lyme vaccine that was removed from the market after more than a thousand people reported injuries.
The same ones who were busted by the CT Attorney general for their IDSA guidelines being biased, and the authors for being riddled with conflicts of interest- the small "cult" that, in my opinion, doesn't mind putting profits before patients.
Check out the film called "Under Our Skin". You can watch it for free on Hulu at the link below. That is the nice version of why you are so sick and who is to blame.
Hopkins is home to one IDSA guideline author, it's editor, some of the other authors who later moved on to horrify people in other states, and a Hopkins wanna-be.
I've never seen any group of people more evil than I've known them to be. It is horrifying what is happening to Maryland Lyme patients- and I blame them for it.
Welcome to LymeNet! I know, I know, people are always saying I need to open up a bit and tell it like it is. I have such a hard time doing that, don't you know?
posted
When I got my diagnosis I was mostly relieved, but I'd be lying if all the "it's all in your head" etc. I got from previous doctors didn't affect me.
So after ~6 months of treatment when my brain fog started getting better, I'd lay in bed at night thinking back and half convincing myself it was all in my head.
I'd do that with pain too. I'd have bad days and they'd be horrible, but as soon as a good day came around, I'd find myself thinking "Maybe it wasn't as bad as you thought"
Same with fatigue "Maybe other people are this tired too"
It cumulated with me stopping treatment when I was CLOSE to better, but still had symptoms, because I'd convinced myself it was all normal.
Then, when I got progressively worse from the day I stopped antibiotics, I continued to tell myself I was hyper-aware and imagining it all. It took me 6 months to re-start antibiotics.
So, I guess what I am saying is that Yes, I had some doubts. As soon as I started herxing I felt reassured, but I would second-guess everything after it happened.
If you have Lyme, you will either see a herx or an improvement. It might be slow. There will be ups and downs, but you will see something.
But don't let all the nay-sayers make you doubt yourself.
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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posted
Thank you for all the support. The main issue is the bartonella for me. Doc says he suspects lyme or babesia as the co-infection but will let me know what he decides upon our next visit in a month. In the meantime, He is treating me for Bart with Cipro and lyme or babesia with doxycycline.
I am specifically under a John Hopkins Insurance plan because my father is military--it just makes so much sense now in hindsight why these people have been so annoying in helping me to feel better.
I worry it's all in my head, but I met someone today and we talked for about 10 minutes and I found that he had lymes and still feels awful because when he got the BULLS EYE RASH--TELL TALE SIGN!! His doctor only treated him for a week. We discussed that terrible headache that resonates at the back of the head and the joint pain that feels like burning metal after you tried to exercise yet again, just to show the doctor you are trying. I realized at that moment and allowed myself to say--'no, people do not normally feel like this. This is NOT normal'. So I'm excited for the possibilities of feeling better and scared at the chance that I won't.
I feel incredibly blessed however to have found this forum. It's amazing to find people who have a similar experience and are there to support you.
I'm on day 2 on anti-biotics. I have had a headache since 2 hours of starting the cipro and my joint pain is pretty bad--When will I know if I'm having a herx reaction? How much worse than 'normal' (as in the normal you become once you hurt all the time) is the reaction?
Thanks for your support!
Posts: 4 | From Waldorf, MD | Registered: Jan 2012
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