posted
I posted this in "Seeking a Doctor", and I apologize for the repeat. The problem is that some of the questions are medical and some more "seeking a doctor" related, so I figured I'd post it here to get the most input I can because I'm really at a loss. Here it goes...
Hi- I posted yesterday about finding a LLMD in the greater Seattle area, but even with the very helpful input from people I still seem to be in a very tight place.
In brief: Diagnosed 2.5 months ago, got in right away but treated insufficiently. Lyme still present, having a variety of systemic and cognitive symptoms.
My dillema: I need to get in to a doctor A.S.A.P., but have basically no financial means other than my mediocre insurance coverage. I did manage to find ONE doctor on the list of LLMD's (out in Poulsbo) that my insurance will cover, but I can't get in until 1/8/2010. There are a variety of Infectious Disease doctors around that are in my network, but I've heard a lot about how they will be of basically no help and certainly won't treat via the ILDAS protocol. I've been told everything from "do nothing" to a complete lumbar puncture and IV antibiotics. Every person you ask you get a different answer from, and I'm left with nothing but confusion about what I should actually do.
I've done a lot of research over the last 2 months, I know a lot about the biology as well as the politics involved. The problem with that is it's caused a lot of stress because I know how serious and immediate this threat is. I can't go to basically any of the LLMD's in this area because I can't afford it. I've been told I shouldn't even bother with Infectious Disease specialists. I also know that I need to get on this A.S.A.P., but the soonest I can get in to the one LLMD I can afford is 1/8/2010 - 2.5 weeks from now!
Every day that goes by I have a tremendous amount of stress about the fact that this spirochete is invading my brain and robbing me of my livelihood, I frankly don't know how I can get through 2.5 weeks of waiting for something to be done. At the same time, it seems like I have no options.
Is the fault of the Infectious Disease doctors overblown? Does the need for immediate treatment outweigh the cost of going to one of them, as opposed to the benefit of an LLMD at the cost of 2.5 weeks of waiting? Ultimately it's the TREATMENT that is needed, not the doctor - so, if I can find out what I need, and if I can get it from an Infectious Disease specialist right away shouldn't that be the best option? The problem is I don't know exactly what I need. I've been told IV Ceftriaxone is probably the way to go, but what dosages and for how long?
Any help that anyone can provide would be of great assistance. Thank you very much.
Posts: 6 | From Seacoast, NH | Registered: Dec 2009
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I think that if you can get in to see a regular family practice doctor, and beg and plead and insist on getting on some antibiotics NOW, they'll be likely to give you 2 or 3 weeks which will help until you see the LLMD. Try to insist on adequate dosing, such as 200 mg 2x day of doxycycline or high doses of amoxycillin, as they might just give you half that dosage of doxy or low and useless doses of amoxy.
-------------------- Symptom Free!!! Thank you all!!!!
I'm surprised you were able to get an appointment so quickly.
You haven't said what symptoms you're having. Some of them can be addressed with supplements, as some symptoms are due to nutritional deficiencies or neurotoxins. Since the liver clears the neurotoxins, liver support can help those symptoms.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
i agree w/maria. try to get on abx til you can see LLMD in jan. I am in Vancouver and go to see LLMD in Seattle. DR. R. he has an integrative practice and so far so good. I don't know if ins. will pay for yours but he is an MD so why not? joan
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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posted
Given Christmas and New Year's are both coming up, I expect that everyone is going to have a waiting time of at least a couple of weeks.
I also want to note that your insurance *might* cover out-of-network doctors, albeit at a vastly reduced rate. For example, my insurance covers about half of my LLMD (like Jola, I see Dr. R) visits. E.g., they pay $110 of a $220 visit. I have to submit the claim myself, but it's really easy.
Obviously I'd prefer a $10 co-pay, but it helps that I'm not covering the whole cost by myself.
And even with an out-of-network doctor, they pay for my lab work and medications at the same rate they'd pay for an in-network prescribing doctor.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
First of all, try not to stress so much, that will only make things worse. I know that is easier said than done. I totally understand your urgency to get things done, but....
2.5 weeks is not that long. Many ppl wait months to get in to see a LLMD. Many of us waited years sick as dogs, not knowing we had LD and going untreated. Waiting 2 weeks to start meds is not going to make a huge difference in my opinion.
2 weeks in the life of Lyme is just not that long. I don't think it even replicates but every 4 weeks. Would have to read up on that and make sure, but pretty sure.
I understand your concern, as you should be. But just be thankful that you found out what it is so early.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I know it's scary and stressful, but you do have some options to consider.
First, take a deep breath, and exhale.
I agree with what people above have said, such as, lyme duplicates slowly, so 2.5 weeks is not long in their life-cycle.
Go to your family doctor, or even a walk-in clinic, and get some antibiotics to tide you over, as suggested by Maria. If that doesn't work out for you, get some herbs:
Andrographis paniculata (recommended brand by herbalist Buhner is Planetary Herbs) 2 - 3 times a day if you can tolerate it, or less if need be.
Also Nutramedix Samento (start with a few drops in water, 2 times per day, 30 minutes before meals). Build up dosage as tolerated, to 20 drops per time taken.
Detox with Nutramedix Burbur, build up drops in water slowly to 8 or 10. Take 2 times per day, 30 minutes after meals.
Or, see "Healing Lyme" by Stephen Buhner, until you can get in to see your LLMD.
Take care.
Posts: 873 | From WA | Registered: Dec 2005
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posted
You have gotten lots of good advice here. It sounds like you had some improvement in symptoms from the initial antibiotics? If so, that is very encouraging.
I agree with hopeful4 -- a couple of weeks is not really that long to wait. And the herbal suggestions are good as well. Hubby does both herbs and antibiotics.
Since you have not seen an LLMD you have probably not been tested for coinfections. Very few infectious disease docs would consider that, plus most of them would say you have alreday been treated adeuately for the lyme -- you just have post lyme or CFS or something like that if they even believe you are sick at all.
I personally would not waste my time and energy making an appointment with an ID doc who most likely will not help since you already have the other appointment lined up.
Hang in there. While waiting for your appointment you might want to look over the various symptom lists and see if any of the coinfections seems likely. Also get copies of any relevant medical records so you won't need to repeat any more tests than necessary.
Good luck and let us know how the appointment turns out.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Ajc, It is difficult to get in on much shorter time frame with anyone. Would like to know about Dr.R. Can you send me a mail at [email protected]. Thank you kindly.
Posts: 9834 | From Washington State | Registered: Oct 2000
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