Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've been trying to figure out my co-infections for a year because it seems like I have something more than Lymebut no test has even shown a hint of telling me what I've got.
Not even a Bart FISH showed Bart, not even a microscoy test showed any protozoans including babs.
So I set up a consult with Dr. R of Washington state who wrote the Lyme book. He's the one who treated Justin and Christa and a number of Canadians. I talked to him yesterday and lo and behold Dr. R thinks I have Bart. Suggested Rifampin and minocycline.
I dutifully sent these expensive consult notes to the LLMD here and asked if he would prescribe it.
me
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Member # 45475
posted
Wow. I'm so sorry, Jordana. That's pathetic.
I get mine from Walgreens, but I'm assuming you mean a reputable online pharmacy where you don't have to have a prescription???
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
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Member # 45305
posted
It's weird. If I thought he would be insulted I wouldn't have even told him,I would have approached it another way. I really thought the LLMDs were sort of in this together and there was no professional jealousy really, considering the stakes.
Strange journey, this one.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
E g o...sorry jordana ..they view it as a priviledge ...mine raise consult ...i didnt argue for same fear i mention clinic in orher town ...they gave name of compounding pharm they get their iv curcumin
she was stoked when i gave her that info ..weird game this lyme world ...she asked me where to get bees too...
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Member # 45305
posted
I'm starting to feel like I don't need them anyway. I know so much about this now; the drugs are in India; there's infuserve for IV and lab tests you can order online.
I liked Dr. R. He gave me some good ideas, paid very close attention and then we were done. I'm thinking I might just keep doing that and get my supplies from Dallas.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Don't give up - try another Lyme doctor. Best to keep going till you find one you work well with and obviously one that will be more open-minded.
Posts: 13117 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Yeah, you bruised your doc's ego. Your doc also can't treat based upon another doc's opinion.
It can take years to find co infections. The docs take notes every visit but they don't see the patient everyday so it takes a while. So they gather the patient's complaints of symptoms even if they failed the test. This helps them to possibly identify co infections or other issues. It just takes time.
Another problem can lie in a patient's need or desire for a positive test to convince that patient that he or she actually has something. This is an old school medicine mentality and does not work for lyme and company at all.
You don't need a positive blood test. Lyme and company are best diagnosed by symptoms because the tests fail all the time. All the time. In fact, I think it's rare when people get positives.
That said, if a patient believes he or she doesn't have something based upon test results, lyme docs won't try to convince the patient otherwise.
The docs are way too busy and don't want to deal with the possibility of someone not convinced going to another doc, maybe one who does not believe any of it, one who might then report the doc. It's just not worth the hassle for them.
Or maybe you had a doc who only treated based upon test results. In either case, I would find a new doc, and be open to the fact that a negative test can still mean you have something because symptoms rule. If I were you I wouldn't mention the word tests at all.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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me
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Member # 45475
posted
Jordana, I think it would be very wise to find another LLMD. I'm sorry you're in this situation. On the bright side, plenty of people on here can give you LLMD recommendations!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Time to get yourself a microscope!
And, a Zyto or Asyra scan. Although not definitively diagnostic, these scans can give you an idea what your loads may be.
Your Bart/Babs tests may not be picking things up because you may not have Bartonella or Babesia (although it's very likely you do if you got bit by a biting insect).... you may have something similar that causes similar symptoms. That's why Burrascano coined the acronym "BLO."
You might consider Bart & Babs cousins such as Brucella or Toxoplasma.
You could even have something as unordinary as chronic Paratyphoid. Do any doctors consider chronic Salmonellosis when a patient has arthritis? No, but Paratyphoid/Salmonellosis can give you arthritis too!
I think it is possible to have a systemic Morganella infection. This is a gram-negative flagellate bacteria similar to Bart. It is a bacteria native to the GI tract, but can cause illness when it gets out of control during times of sickness/stress. Typically known to cause urinary tract infections, but if systemic, I imagine it could cause a Bartonella-like illness. It has been known to cause uveitis just like Bartonella.
Have you been tested for Rickettsias and Mycoplasmas?
Some of the above-mentioned organisms can be seen/diagnosed via a microscope. Morphology can be seen via live blood or with stain, depending on the organism. So, again, I would consider getting yourself a scope and having a bio-resonance scan done.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Jordana
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posted
i actually think maybe it is time to get myself a microscope. Although I did send a thin blood smear out for analysis and got nothing, they didn't find a single thing.
A million years ago this did start with a bad GI illness and I did think that somehow maybe a GI bug escaped and started wreaking havoc.
I've had the best tests possible for parasites - no positives.
I guess my new plan is to treat Bart on the DBC for four months per Dr. R WA. If that doesn't work then I might hit a desperation clinic I just read about in Mexico.
As far as "docs being way too busy" or " it's just not worth the hassle to the doc"...no offense Catgirl but I'm sick of hearing people defend doctors and their weird behavior. The power of being able to prescribe basic drugs invented 50 years ago has really gone to their heads in this society and if I am "too much trouble" for an LLMD then they're all worth nothing to me, you or the world.
Posts: 2057 | From Florida | Registered: Feb 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by Jordana:
I've had the best tests possible for parasites - no positives.
Join the club. Yet I pass them all the time. That's why I said, tests fail. Don't rely on them for anything lyme related.
No offense taken on lyme docs.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
You're right -- I had a massive unmistakable reaction to parasite meds. Still think they're in there somewhere.
. I knew you'd know what I meant.
Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
I am so sorry but honestly think you'll be better off in the long run without him.
Lyme is so complicated and there is so much to learn from others... there is just no way a closed minded doctor is going to be successful.
I really value open-mindedness. It's extremely valuable.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
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posted
Not with Lyme they're not. There are just way too many variables.
Oh! I should write this up in the thread about bad doctors!
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's important to keep in mind that some doctors are literally required to drop some patients at some points if they feel their case is too complex
or too risky, such as if they are doing too many other things in addition to the kinds of treatment with which that particular doctor is familiar / comfortable or has prescribed. This is very important to take into account.
Just because a doctor drops one patient does not necessarily mean they would not be a good fit for someone else. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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Member # 45305
posted
Yeah but Keeb all these cases are complex.
There's a woman in our group who has Morgellon's. She went into the hospital with heart problems, her whole body was shutting down.
Her LLMD had no idea what to do for Morgellon's ( no one does) but he went into the hospital as her treating physician and researched this and told the hospital what to do to treat her *internal* morgellon's.
Last time we heard from her she was shopping and going to the movies.
All it takes from a medical professional is some focused attention. If they're not going to offer that then they might as well not practice and you might as well not get involved with them to begin with.
Posts: 2057 | From Florida | Registered: Feb 2015
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