I made several posts here regarding the blas� attitude coming from my doctor's office. Well, I have to retract that now. Seems the attitude was coming from his staff and the rest of his group while he was away at a conference.
After five weeks since first becoming sick, I finally got in to see my primary today. I fully expected him to dismiss my symptoms (and the photos of my EM rash) out of hand, but instead, he took a very long time with me and tried to get the chronology of the disease as symptoms appeared. He said it was unusual in his experience to have a negative Lyme titer after the rash got to 2" across, but then went on to sat that nothing is usual when it comes to Lyme. Negative serology isn't proof of a lack of infection in his opinion. Good to hear that.
He looked at the pics of my rash found them intriguing. He didn't place as much stock in the rash as I hoped he would, but he said he'd seen just about every type of EM rash known, and that some of them that looked exactly like classic Lyme "bull's-eyes" produced no symptoms and had negative biopsy cultures and serology. "Other insects can, at times, produce a rash that looks exactly like the one you are showing me, so it's not proof positive of Lyme to me... but we're going to treat it like it is." He also told me to go right home and print out the photos of the rash just in case I needed them in the future and somehow lost them from my phone or computer.
I was stunned to hear him say this, even more stunned to hear him say he was thinking of going to IV antibiotics instead of increasing the doxy as I originally asked him to. In the end, he wants me to see both a neurologist and an infectious disease doctor that he claims is very Lyme literate. If they think I need a lumbar puncture, he suggests I get it and go with the IV abx if that is their recommendation.
I explained to him my fear of the IV drugs and he seemed perplexed until I told him that I lost my mother to an infection from a PICC line. He said he could now understand my concern, but that I had to consider the much greater risk of coming down with difficult to treat or even incurable chronic Lyme.
Chronic Lyme? Did he really believe in such a thing? He looked at me like I had two heads. "Well, there has to be a logical reason why so many desperately ill people who've had confirmed Lyme respond so well to long-term antibiotics."
Turns out my primary served his residency in 1977 in Middlesex, MA. The hospital he worked at treated patients from all over the Northeast. He said that he saw some of the first Lyme diagnosed patients from the first disease cluster in Old Lyme, CT, so he has been looking at and treating Lyme for a very long time.
Best thing was his ire at the big guys at the top, same ones we all seem to despise here. He actually went to a few of those famous meetings where the scientists from the IDSA and CDC and such were ignoring what he considered to be a "very intelligent and articulate" group of Lyme sufferers who had obviously intensively studied up on Lyme and "really knew their s***". He was as appalled as the rest of us are, and attributes the present day public health policy on Lyme to the egos and research budgets of the early researchers. "The last thing they want at this point in their careers is to appear to have had it all wrong."
He likened the whole Lyme fiasco to the brouhaha over Dr. Atkins and the low carbohydrate diet. "We knew he was right, even back then. Unfortunately, it took nearly 30 years for mainstream researchers to come to the same conclusion. Many still aren't on board."
So, maybe my primary care doc isn't a "Lyme specialist", but he doesn't have any of the dismissive attitude toward the disease I thought he had. Now I feel bad, because I publicly dissed him so much earlier on. When I left, he reached out and shook my hand. "Don't stress... we'll get to the bottom of this. My honest opinion is that you got on this in time and are likely cured, but let's make sure. This disease is nothing to fool around with."
So, I feel a little bit better. I have no doubt that he will push for a more aggressive treatment if I need it. He even said he would try what I suggested if it seemed logical to him. I wanted to try to double the doxy dosage, and he was skeptical but willing. In the end, he talked me into trying a full course of Cephtin instead, and if that didn't work we'd try 400-600 mg of doxy/day. I was so afraid he would say, "You tested negative, you never had Lyme... No drugs for you."
I couldn't have been more wrong.
Now, I have to ask a big question. Dr. I ordered new tests, not just for Bb, but also ehrlichia and babesia. I want to have them sent to another lab instead of the local one. Is Stonybrook a good lab to use? Should I ask for Western blots yet? It's been about 6-8 weeks since my presumed infection. Has my body had time to produce enough antibodies yet, especially since I have been on doxy for 5 weeks now?
BTW I'm feeling mostly asymptotic at this point. Still a little woozy at times, and lacking in strength, but much more energy than I've felt for awhile. Only needed a 15 minute nap this afternoon and I was raring to go again.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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James1979
Unregistered
posted
Fogged - that was very well written, and enjoyable to read! Thanks. It's always good to hear of a "good" MD that takes Lyme seriously.
Concerning your questions, I won't be much help, but I can say that 4-6 weeks is usually enough to produce WB antibodies. I don't know much about Stonybrook, but is it possible that your doc will sign the sheets to get your tests done at IGeneX? Maybe you can give him documents which show the reason why it's important to test for bands 31 and 34, like they do at IGX.
I've heard that the babesia tests aren't very accurate, because there are many strains - so definitely don't take a negative result seriously.
I'm confused as to why he would want to test for ehrlichia. It is a common co-infection, but AFAIK it is easily cured with the 1-month of doxycycline, so it's usually not a problem. I'd like to hear from somebody else if I have written incorrect information about this.
posted
Antibiotics can blunt production of antibodies early in the disease and can produce a negative test result, at least that is what an FDA advisory said.
Lumbar puncture is not a good idea. Seldom produces positive test results even in people who clearly do have lyme. And it can produce bad headaches, require blood patches, etc. Try to get out of doing it.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I believe he wants the ehrlicia and babesia tests done to see if they were present since I had such an atypically severe onset for Lyme alone. If they come back negative, that may mean that the Lyme needs to be treated more aggressively? Not sure, just speculating.
He considers them both to resolve on their own in most cases, anyway. I asked him if he really believed that, and he kinda rolled his eyes and said, "Well... that's what they tell us."(meaning the CDC and the IDSA).
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I think you were snookered, placated by your doctor. I don't put any stock in him wanting you to see a neurologist or ID.
Hope I'm just not jaded for 17yrs dealing w/doctors before getting to a true LLMD. I hope you really do have a truthfully Lyme/Tick Disease caring PCP.
Will keep my fingers crossed for you. May things keep going positive.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thanks for letting us know fogged. I think some doctors know full well how serious Lyme is but they don't want to admit it. It sounds like he is aware of how powerful this bacteria is, particularly if he is suggesting IV.
What he said about the size of the Bull's eye rash was very interesting. I had never heard that the size could indicate how severe the bacterial load is. I had a HUGE Bull's eye. Maybe that is one explanation of why some people are sicker than others.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
I don't think he thinks the bacterial load is necessarily greater. The 2" size is more of a time indicator than a load indicator. He feels that by that time, you should have built up an immune response and should test positive on the ELISA. He fully recognizes the fact that I could have a negative test and still be infected.
Nice thing about my doc is that he always makes a clinical diagnosis. Years ago, he sent me in for an upper GI series for suspected hiatal hernia. When the test showed no evidence of one, he was unconvinced and treated me for it anyway. The following year he sent me in for another series and this time it showed I had one.
Posts: 50 | From Saratoga Springs, NY | Registered: Jun 2011
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posted
Igenex will be best for the WB as many have said in these forums. But most likely you'll have to pay out of pocket for it. I'm not sure if your body has had time yet to many antibodies though.
Stony Brook is another option. Not as good as Igenex, but if your insurance pays for Stony Brook, you can certainly try it. Have your doctor write on the script that he wants all bands reported though. I've read they'll test all bands, like Igenex, but only if the doc requests it.
Ehrlichia & Babesia you may want to get tested at a regular lab, not Igenex, due to cost. Depends what insurance you have. It's also worth getting tested for both strains of ehrlichia (I was only positive for one), Babesia WA-1 (Labcorp does that one), Bartonella henselae and quintana, and spotted fever.
Even if you don't have symptoms of some of those diseases, a positive is further proof of a tick bite (as well as Lyme).
Posts: 584 | From NY | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I would go see a true LLMD. I don't trust an ID doc or a neurologist to admit the truth about Lyme Disease.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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