posted
Does everyone just lie about the lyme disease?
And not tell your primary doc about any of the abx your on?
Do you just have your LLMD treat everything, and then just use your local ER, if you need something sooner? Which I'm considering.
I'm soo tired of being looked at like I am crazy!!!!!!!
I was seeing a physicians asistant, but when I had some forms filled out, and his supervising doctor went to sign off on them.... That dr disagreed with the lyme diagnosis, flat out.
So, I hadn't been in to see them in 4 months. Which is where I had been geting my B-12 shots from.
After about 2 months I finally got off my butt, and called around. Made an appt with a new dr, and specifically had the person ask about lyme and that I wouldn't be having her treat it, but if the dr would be comfortable with me as a patient, seeing another dr, receiving treatment for Lyme.
They said the Dr was fine with that. I had to wait to get into see her. Went to that appointment today. Yup, you guessed it. She "doesn't buy into the whole lyme thing".
My main reason for the local dr, was B-12 injections. My last B-12 level about 8 months ago was at 176. So, if I can get my LLMD to prescribe me that so I can do it at home. Then maybe I don't need a local dr?
The local neurologist doesn't believe in the Lyme diagnosis, because Im not CDC reportable positive, so he ended his relationship with me.
I'm sooo tired of being looked at like this is all in my head!!!!!!!@!!!!
My LLMD is 3 1/2 hrs from me.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Your LLMd should be able to prescribe you the B12 shots. They call it in and then you call the pharmacy with your credit card number. You don't need to go see your LLMD to get the script. If he/she knows how low your levels are then he/she should be happy to call it in for you.
I had them shipped from a compounding pharamcy and you refrigerate it when you get them. I think I had 10 mg 3 x a week and they were methycobalyn (sp?). They stay in your system for quite a long time so if you do that for a few months you should be all set for awhile.. then check your B12 levels again to see where you are?
This way you can be at peace and not get questioned by all these mean doctors!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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posted
The dr I saw today was nice enough to order the blood work I wanted, and did call in a rx for the b-12.
However, the rx was only for once a month, 1000mcg (1mg) CYANOCOBALAM is the type she prescribed. not sure about the difference. IF someone wants to tell me about that, i'd appreciate it.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Methylcobalamin is one form of B-12. It is better for brain and nerves.
Cyanocobalamin is better for heart and circulation.
I'm having the same problem with finding a local primary care physician. I don't think I'm going to mention Lyme. Just going to say fibromyalgia and peripheral neuropathy and hope for the best.
-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
It is good to have a local doctor willing to help. Try to find a young doctor, fresh out of residency. They are generally more open minded, curious, and still empathetic.
Do tell them that you are being treated for Lyme. Make it clear that you are seeing a specialist for this. Don't make a big deal about it. Just mention it at some point. What you need is a primary care physician for routine physicals, acute illnesses, etc.
It's not a good idea to lie to a new doctor who you are hoping to establish a helpful long term relationship with. They need to trust you as much as you need to trust them.
When you see a new doctor always bring an up to date medication list. They need to know what you are taking. These things do have a major impact on your health.
It is also helpful to bring any pertinent health records (like your last b12 levels since you are needing an RX).
Good luck!
Posts: 5237 | From here | Registered: Nov 2007
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posted
That was my thought as well Sammy, when I went to the doctor this morning. But, now I don't know. This dr, was not comfortable with lyme at all.
What sucks is that in my area it takes 4-8 weeks to get into a new dr. And so far, asking them questions over the phone hasn't worked. So, It's like im playing the lottery to get a primary physician.
I can try a new one every 1-2 months, till I find one.
Ok, I'm whinning. Sorry. Bad day.
I'm going to have to be more forceful when I call to find out info on the dr, before making an initial visit.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Laura.. I hate to sound negative but you will come to know this whole thing is so corrupt. My regular doc knows not a thing about Lyme nor does he care. Has not been helpful at all. So I am forced to spend a ton of money that I don't have to see some fancy pants rather arrogant Lyme doc.. Who just wants to poison me even further with a ton of abx... I'm still lost as my name reflects. There has to be a middle ground a better way.
Posts: 267 | From South | Registered: Oct 2011
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posted
At this point lost, I'd like to be able to see the fancy pants Lyme dr.
I'd really like to try a harsh regimen of killing of these bugs. I'm a person that is all for abx. Although i want a mix of supplements in there as well.
And, I agree the system is corrupt.... I've dealt with it for awhile, its just so irritating. I have to vent sometimes!! I know you know the feeling.
P.S. Lost.. I have found it difficult to read your posts because of my lyme eyes. If you could break them up more it would really be appreciated. Anything more than 2 1/2 lines becomes tough.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
Can you ask any support group for referrals?
I had to go through checking with several primary care docs until I found one that was comfortable with the topic. I suggest you just keep looking.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Unfortunetly the closest lyme support group is 2 hours away from me. But, Yes, I do need to keep looking. You're right Robin.
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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posted
I am sorry Laura I will break them up. My Lyme brain makes me forget. :-(
its ok to be all for abx.. I'm just not that type of gal. Taking it easy.. Gut instincts tells me so.
Posts: 267 | From South | Registered: Oct 2011
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I never mention lyme to our PCP or anyone else outside the 'lyme-loop.' Last time we did, it was at the ER and we got a very hostile response.
That was the point at which I said, 'never again!'
It's not such an issue for us now, as we are in remission. We did photon therapy.
It worked for us and no need for the @#*& you get from the mds.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I have a primary care doctor that just keeps me going on non-lyme stuff, not abx anyway. He knows I have lyme and has told me several times he doesn't treat it. Just wants to remind me that he doesn't want to get into that quicksand. But he has other lyme patients and does know that the prevailing medical opinion is wrong. He is not all that committed, but good enough.
However, normally I would not mention lyme to a doctor that wasn't treating me for it because I am really tired of the hostile reception. Don't need the added stress. I have been on my own a lot with this disease and having to figure things out, so why ask the ignorant what they think or give them a chance to say it.
My primary care doc does acupuncture and bioidentical hormones, so he is not traditional. So, my opinion is to look for someone like this, non-traditional, and they may be more openminded.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lost.... I understand about Lyme brain... lol. And we all have to find our own way. Each of us is different in what works best for our bodies
To the rest... I am thankfully able to go to specialists without a referral, so PCP isn't needed for that. I also have had to seek out most of my specialists.
I'm sorry that most of you have had to go through the same issues that I have, but it is also comforting to know that I am not alone in the matter.
Thank you for all of your support
-------------------- 10/10 EIA 1.4+, 41 (IGG), 23 (IGM) Bitten over 20 years ago. Currently not treating, looking for a Dr who will work with my insurance lol.
More muscular, cognitive, nerve issues than joints. Facial droop and blurred vision. Posts: 323 | From Michigan | Registered: Apr 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Contact local lyme support groups to hear of area lyme-friendly or at least non-combative doctors who may be helping others with basic care, even if not treating lyme.
Also ask which E.R.s to avoid if there is a choice.
Many people have problems with the E.R. if they "lyme word" is even whispered. It changes everything and, usually, the complexity of lyme is NOT taken into account.
However, in the E.R., if asked what Rx, typical OTC products, herbal and other nutritional supplements you are taking, honestly is vital and the treating doctors have the right to know so as to avoid possible interactions.
But most doctors are not well educated about herbs and just huff and puff because they don't know what (I think) they should. But, in fairness, that would take about four years of naturopathic training.
I've learned to avoid the E.R. after a couple of horrendous visits. I also figure I'd rather die on my own than ever have to go to another E.R. - ever.
Where I live, the ER would never have the expertise to treat me - so many doctors have just thrown up their hands.
Anyway and the noise and lights are just too stressful for anyone, I think. That's not healthful and I think actually stresses out all patients, hurting their chances of recovery.
I'm learning as much as I can to take care of myself - and I am very careful when using kitchen knives and when walking. Paying attention at all times is my insurance policy.
I would like to see E.R.s be more like a soothing spa. I think everyone would benefit. They need not be fancy but a soothing atmosphere is so important.
Almost more important than if the E.R. doctor might know enough about lyme regarding how it might influence the emergency - is also the atmosphere and tenor of the place and staff. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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