posted
Well went to my doctor appointment with my husband and it was like talking to another doctor. Based on my symptoms she gave me the Lyme medicine and is testing me for co-infections. I do not understand the flip whether it was my husband or my talking more about why I thought I might have Lyme. She doesn't want to give me the referral for the LLMD yet. She does want to give me a referral for an RA doctor. She thinks too I might have other issues. We have a lovely genetic pool on my mother's side. I don't know so right now,I'm waiting to see if I feel better on these meds and then go from there. thank you all again for your help!
Posts: 22 | From cape cod ma | Registered: Jul 2011
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posted
I'm sure you have Lyme. Aside from the extremely suggestive symptoms, you have Western blot bands at 83 kd and 66 kd. (I assume they're reporting IgG rather than IgM, since it's now a late stage illness.)
The 83 kd band, particularly, is highly specific to Lyme.
The 66 kD band is specific enough that it is accepted by the CDC criteria, though Igenex and Dr. J don't use it because it has some cross-reactivity with antibodies to other microbes.
Your insurance may pay for oral antibiotics even though prescribed by a physician who is not on their list. My husband and I both opted for orals, as we've been sick for years, and expected the treatment would be very lengthy.
Orals are safe and have minimal side effects for many (most?) people. We've been on them 4 years, with a couple of breaks to see if we could stay well without them - we couldn't. For us, they have no side effects, and a multitude of symptoms I didn't even recognize as such (irritable bowel, sore shoulders and neck) went away. My best combination is Dr. D's: Biaxin + Plaquenil, plus Nystatin to guard against yeast in the bowel.
I didn't ask the insurance company, just handed the prescriptions in at the pharmacy, and they've been covered with no questions. I think the insurance company gets such a good deal on these drugs that it isn't worth it to them to contest it. Intravenous is another story - I decided not to do it unless I was bedridden or afraid I might die. I decided to go for long-term orals, because I didn't think short-term IV would do anything, and long-term IV is somewhat dangerous, though if you have to do it, you do it.
Nothing's as dangerous as untreated Lyme disease, unless you're one of those lucky people who can tolerate the infection with only mild symptoms.
The LLMD isn't that expensive, considering the alternatives. I'd give up a few luxuries like cable TV, cell phone service, etc. if I had to, to afford it . (My cable TV costs as much as my LLMD per year!) I personally don't spend money on homeopathic, herbal, etc. treatments - those can be really expensive if you get into them big-time. But that's up to you, of course.
Best wishes!
Posts: 74 | From MA | Registered: May 2007
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Hi - my 2 cents here - I think you'll be wasting your time with the RA doctor - I saw several RAs when I didn't know I really had Lyme - it's a waste of time - you just need to get to a REAL Lyme-treating doctor -
And since we all know about meds here, what Lyme med did your doctor start you out on and how much?
Posts: 13171 | From San Francisco | Registered: May 2006
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ic doxycycline 100 I take two a day. So far I don't feel better worse actually they seem to be making me really tired. I would love to see Dr D but he requires a referral which my doctor will not give me right now. I'm so confused honestly everything I am reading about lyme is so contradictory. If I do not see a noticeable change in me after the meds are gone. I will be calling someone either another doctor to try to get a referral or see the doctor up in Boston that have to pay out of pocket. I really appreciate all the care and info you all have given me. I know what you have shared will make a difference in my life because if this doxycycline doesn't work, I will pursue the Lyme and not the side symptoms. Thank you!
Posts: 22 | From cape cod ma | Registered: Jul 2011
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Also lorima how can tell that info (band info )from my test? I would prefer to try to go back through my doctor for another try at referral and would like to be armed with info. Thank you!
Posts: 22 | From cape cod ma | Registered: Jul 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Linen, log onto lymediseaseassociation.org and they will email you 3 doctors. You want one that is ILADS affiliated (International Lyme and Associated Disease Society), so be sure to check the ILADS box.
The doctors usually have a waiting list that is 1 to 2 1/2 mos long. Ask to be put on a cancellation list in case someone changes their mind. You will have to drive to see them though, but it's your life your talking about, right?
I know that Dr. D requires a referral. Some people really like him and some don't (a couple of people have told me that they got no where with him regarding co infections).
You may just want to find another ILADS LLMD and make an apt. I did this and two doctors offices that were booked for 2 months out both called me with cancellations, so I was able to get in quickly. I had to drive to see a doctor, but I knew from reading on this website that the sooner I got treatment, the better off I'd be.
-------------------- --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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Thank you Mindy I appreciate it. I will do that. I've been on the lyme med for almost a week now. At first I was really sick and now still feeling really tired but my joints are in a lot less pain. I also found out I have mono so the super tired might be from that. Thank you!
Posts: 22 | From cape cod ma | Registered: Jul 2011
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