Feel like things are getting worse

[fightingmom]

thanks for all that information. I'm not sure Dr. L is in the cards for us right now. It was hard enough to pull off the entire day to see Dr. B. I also need a doc that takes insurance, not sure if she does. I'm self employed and pay my own insurance and we have hefty deductibles. Last year I paid almost $16000 just for insurance or deductibles not including all the copays and medicines, etc. Does Dr. L take insurance?

 

Lyme was only suggested for me, but Dr. B. probably tested my son for that as well. I'm only a week into this journey, so I haven't made it on to anything else. My problems started in my late teens and early 20's fainting and all kinds of weird stuff I have seen in many lyme links now. IF that's what I have, I'm betting it's possible my son was born with it. He's been a sick kid since day one. Spend a week in hospital with unknown illness and high fevers when he was only a week old, etc.

 

Yesterday, I had my left ovary and tube removed. The ovary was constantly growing hemorrhagic complex cysts, my fallopian tube was attached or stuck to my intestines (which I called spot on, told my doc a few weeks ago I thought my ovary was pulling on my intestines!), he found more endometriosis and cut that out as well. This was my 3rd surgery in 15 months. I can't even move today. So, I'm just praying the antibiotics curb the flare for now and will be on a mission in a week or two to get things in order.

 

Does anyone have a recommendation for a lyme doc in the northeast? And that takes insurance? I found a nurse practitoner online that is out of RI or in MA closeby, I can't remember. Her website was great, I'll have to go check her out again.

[LNN]

Dr L, and most LLMDs, ask you to pay for the visit at the time of the visit. They then give you the insurance form to submit on your own. In most cases, your insurance co. applies their "approved" rate to your deductible. So if the office visit is $200, you pay $200 to the doctor. You then submit your claim and the ins. co. says "we'll approve $160 for this visit". They then apply the $160 toward your deductible. Once you meet the deductible, you'd be reimbursed the $160 (or maybe 80% of that) and be out of pocket the $40.

 

The reason these docs do this is that they typically spend twice the time with a patient that the insurance co.s think is "necessary". So the insurance co. says "we'll pay for a 30 min visit." But Dr L spends an hour with you. So she's not going to get into a fight with the insurance co. about all that. She understandably wants to be reimbursed for a full hour of her time.

 

It's a fairly common practice in the lyme and autism worlds for this very reason. In order to give patients the face time needed, the doctors need to avoid being seriously discounted by insurance companies. It's easy to get frustrated with the doctors, but it's very reassuring to be able to sit with a doctor and not feel rushed out the door. You finally feel heard and often get the treatment you can't get elsewhere. So it sometimes comes down to a penny-wise/pound foolish situation if you limit yourself to in-network doctors (not to be insensitive to financial realities - I get that sometimes there just isnt' enough money in the bank). Just trying to explain the reasoning behind the situation.

 

For LLMDs, you can go to lymenet.org to their "seeking a doctor" forum and get recommendations or you can ask on the ACN lyme forum. I do have several names of LLMDs in New England but none take insurance. While you're recuperating, you may want to read Cure Unknown by Pam Weintraub. It's a fascinating read about the complexity and politics of lyme.

[fightingmom]

Thank you, thank you. I will pick up that book. Maybe it will even be available for download onto my ipad.

I may be in a good position to try an LLMD now, because both myself and my son's deductibles have already been met. So, perhaps they will have to reimburse us a portion.

 

If you have time, could you PM a few of the doctors you know of?

[fightingmom]

Oh and this morning, my son was great again. Got up on his own without a fight, ate his breakfast without complaining. Seemed more organized. Was very thoughtful and asked me a few times if there was anything he could do for me before he left for school.

Hooray.

[fightingmom]

Last night was good and this morning, too. Things are looking up on just the abx after ditching the steroids. Phew!!

[tpotter]

Sorry, did I say it was his immunologist? I misspoke. His THERAPIST said that last night.

 

No, you didn't misspeak. I misread. I went back and edited my post. Mea Culpa.

 

I forgot that bartonella was on your radar. Given the cat and your son's rages, I'd keep it on the radar. If it's a factor, one antibiotic may not be sufficient and prednisone would not be advised. Like DCmom suggests, a month of abx therapy alone may have given you more information before confusing the issue with prednisone. But different doctors have different protocols. If you're told to discontinue the prednisone, I would not be disheartened. It doesn't rule out Pandas. In most chronic illnesses, tests offer clues more than they offer proof.

 

So I add a third item to my above list - bartonella. Here's an article you might find helpful. http://www.benbrew.com/lb/lb.html Read it carefully - the author (who is not a doctor) sometimes jumps from talking about lyme (abbreviated Bb for Borrelia burgdorferi, aka lyme disease) and talking about bartonella. Often in the same paragraph. One minute he's talking about Bb and the next sentence he says something about bartonella. So you may need to read it a second time, paying attention to which infection he's talking about in that moment. It's technically accurate but confusing. Parts are very informative, others not so much. But it's one of the more comprehensive articles I've come across. Pay particular attention to the section of how it effects relationships. I found it to be very true (my DS had a bartonella dx and was treated with azith+bactrim for 9 months).

 

 

My DS16 also has bartonella, and is STILL being treated (but can't take azith, flaggyl or doxy, because of allergies, and pancreatitis , so it's been very hard to get under control. But, bartonella will certainly cause rages. Also, you might want to make sure you test for mycoplasma pneumona, because it will also cause rages, and it can be a co-infection of lyme. Actually, since you're seeing Dr. B, he's most likely had your whole family test for that. It was because of his testing DH and me for mycoP and strep, that I finally found out why my asthma was completely out of control for 3 years (mycoP!)

 

You're in good hands with Dr. B. I was not certain that I wanted to go the route of IVIG, especially once I found out that both my boys also had lyme (figured I get the infection taken care of first.) But, insurance finally came through, and I wasn't going to lose something I had fought so hard to get, so I did it WHILE the boys were also being treated by an LLMD. I am very glad I did. It made a world of difference, and the edge has now been taken off of them. And, as you know, I also have older children who have suffered for a very long time.

 

I would definitely listen to what Dr. B. suggests, decide if it sounds/feels right to you, and then do what you think is the right way to go.