posted
My primary doctor called me today and since my Lyme Serology is boardline positive she is sending me to and infectious disease specialist tomorrow.
I have had several tell me to get with a LLMD as quickly as possible but seems there aren't any close and the ones I've been sent don't accept insurance. This really scares me.
Can anyone give me suggestions on what to ask this doctor? I am so tired of going to them and getting no answers, it's frustrating, but I see that I'm not alone by no means.
I found a link on this site of Lyme symtoms and I had 29 of the 46 symptoms or have had them over this past year. I can see myself in so many others comments so I guess what scares me most is that this doctor will say it's not Lyme and I will be back to step one again with no answers.
Thanks everyone for your post they are so helpful.
Posts: 7 | From KY | Registered: Jan 2012
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quote:Originally posted by BobbieT: so I guess what scares me most is that this doctor will say it's not Lyme and I will be back to step one again with no answers.
- That's what will happen .. almost guaranteed. But maybe you need to go so you can prove it to yourself. We'll be here for you when you get back from your appointment!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you are in Kentucky and the symptoms of Chlamydia Pneumonia can mimic lyme (or the other way around),
you might ask the ID doc if he/she is familiar with the work that has been done at Vanderbilt University regarding chronic Chlamydia Pneumonia.
The treatment is very similar to that which ILADS' doctors use for lyme (he does not need to know that, though). Some patients have both and, of those who do but can't find a LLMD, a doctor who can treat Cpn can be a life saver.
Only certain labs do this test correctly, and you need IgA, IgG, and IgM.
Still, be prepared that most doctors do not agree that this can be chronic. Most have been exposed and they just assume it's a done deal. It is not, always.
posted
I watched the movie night before last and yes I can see myself in so many others stories. I even had my daughter-in-law watch it with me.
Needless to say I'm just so overwhelmed right now. So many questions running through my head. About the Lyme and my life in general. I have 4 grown sons but I am widowed at 46 so I feel like I have no were to turn should things get bad and I'm unable to work and take care of myself.
Sorry just venting....
Posts: 7 | From KY | Registered: Jan 2012
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posted
That's good, Bobbie. I'm so sorry you are alone. That is all the more reason to get well.
You could take it "low and slow" with treatment so you could continue working.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Bobbie, part of having lyme makes it really hard for us to reason things through. Unfortunately, most people have discovered on their own that 99.9% of ID docs don't have a clue about lyme (unless it's the two really good ones in "Under Our Skin").
Unless your doc is ILADS trained, you're wasting your time. But seeing one is your situation to figure out, just like all the rest of us who've seen one have.
That said, we are all just trying to save you time, and prevent you from the awful feelings we felt after going to see them. They have only been trained to think one way. They are ignorant to lyme. A big part of the problem is their hubris.
Plus, once you go see one and he or she tells you that you don't have lyme (especially if you fall in the false negative group the majority of us all have), you will spend a huge waste of time and energy trying to prove you do have it. Another waste of energy.
I guess the easiest way of describing what happens to someone who sees an id doc that tells them they don't have lyme, even though you know in your gut you do, is to compare it to a workers comp claim. No one believes what you have is real. People think you are making it up, so you then waste valuable time, energy, and emotion trying to prove otherwise. You basically are stereotyped as a hypochondriac or someone with "lyme hysteria." The negativity you will experience is just not worth it.
Do yourself a great big favor and ditch the i.d. apt. and find yourself an ILADS doc. You can go here: http://www.lymediseaseassociation.org/ and they will email you some names right away. The apts take time to get, but are worth the wait.
And you might want to get the book: Cure Unknown. It will clear things up for you about lyme.
All that being said, hang in there. You've already made the best move logging onto lymenet. It gets better.
One more thing, you can always ask the ILADS doc to be put on his or her cancellation list. People cancel and the docs are only too happy to fill the spot. That's how I got an apt within 2 weeks.
-------------------- --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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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
WOW ! Next day appointment....She must think it's important...JUST in case,if this ID doc does what the 7-8 I saw did...
..Then maybe she would at least get you on Doxy. until you can get in with a LLMD....How sick are you?
Can you work/get out/lots of pain etc......
Reason I ask is if you can travel to get started....with treatment.....NO WAITING and NO STEROIDS..........Nonna...
.Pray it goes well/better for you than so many of us....
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Even if the ID Dr miraculously says "Yes, you have Lyme". They will only treat for 2-4 weeks max. That's not enough, but might get you through til you can see an LLMD.
Mine agreed that I had Ehrlichia (a co-infection)and gave me 2 weeks of Doxy. After that, he said "the positive Ehrlichia results must have just been a coincidence" and tried to send me to a Rheumatologist.
If you do see the ID Dr, be prepared for MAJOR invalidation.
posted
I just wanted to take a minute and follow up with everyone and say thank you for the feedback.
I saw the ID doctor today and went in ready for the worst and prepared to hear exactly what everyone said I would hear.
However, this was not the case at all. This doctor spent almost an hour with me. Reviewed all the test I have done so far and explain to me in detail about Lyme disease, coinfections and other diseases/disorders that mimic Lyme.
He did not rule out Lyme and is retesting me along with doing a bunch of other labs. He was very glad I had stopped the Prednisone and also agreed that if it is Lyme it would to more harm than good.
No he didn't start treatment of any kind today but is waiting until the first of the week for the labs to return. He did say that if I were positive or he suspected I was he knew of a LLMD in Indiana that he referred to.
I'm satisfied with todays visit but yet very cautious as well. Please keep posting everyones input in very valuable to me.
Thanks and best wishes!
Posts: 7 | From KY | Registered: Jan 2012
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