Advice on how to treat Lyme economically

[FallingApart]

For those of you who are a bit further down the road than us, can you offer any pointers on how to go about this the most economical way possible? Like all of you, we have been on this road for several years and funds are getting tighter. It seems like the Lyme path is the most out of pocket treatment thus far. So I was wondering if you have learned anything on how to best go about this?

 

Thanks so much all.

[LNN]

This is a tough one. On one hand, you want to do what's necessary to get your kids well, but on the other, having money to pay other bills is nice too. Aside from the LLMDs not accepting insurance, there's all those supplements...

 

For us, the LLMD visits are covered at about 50% (80% after they reduce his rate to what they deem it "should" be). For me, the antibiotics aren't a place where we can cut costs. We'll do the "right" abx regardless of cost. The place to be cost conscious is with the supplements. I'm sure I sound like an ogre, but I'm always asking what's practical. I have picky eaters (and two young kids with lyme). So if it's an herb or a powder that isn't going to dissolve well, I pass. I have bottles of stuff sitting in that cabinet that the kids turned their noses up at. So by trial and error, our LLMD and I are developing a line in the sand and we're coming to an understanding that the only supplements that are going to work are the ones I can get into their bodies on a consistent basis and have the biggest bang for the buck. So we spend less and less time talking about "nice to have" supplements or things that adults can force themselves to take and focus on the "must haves". I know this slows down our treatment, but after 3 years of complying with all we've asked (pex, IVIG, pills, doctors, pills and more pills), I have to pick my battles with the kids. They just want to move on and be kids. (and I want to have money for a new furnace).

 

No easy answers. Just lots of company in this arena.

[MichaelTampa]

I went right in with antibiotics, and feel, because of that, in the long-run I will have taken more antibiotics than if I had done it differently. Abx have certainly been the most expensive thing for me. If I were tossing aside urgency of healing, and looking toward reducing costs, I think I would do it something like this:

- first, treat the worms first with adjusted diet, gamma rizole, then zeta rizole, then antihelminthics

- second, find a good herbal formula or two or three and go at it for a couple months or so with that

- third, if/when plateau, or ready to finish them off, then antibiotics

- also 1st/2nd/3rd, find some good heavy metal detoxers and organ detoxers, do think they make all the other treatments more effective, there are cheaper ones and more expensive ones

 

I don't know that this would work for everybody. It is closer to what Dr.K. in WA recommends. Believe it or not, there are LLND's out there who think they can treat lyme without abx. For anyone deeply concerned about costs, and willing to be a bit more patient, this would be a method to consider.

 

Probiotics have also been very expensive for me! To do again differently, I would have worked harder to find a good-enough probiotic that was less expensive.

[adkmom]

Not sure what they can offer. But there's LymeAid4kids. I believe it's through the LDA website.

[FallingApart]

I was thinking that the abx would be the easiest part of this whole thing since they should be covered by insurance. Is that wrong?

 

And Michael, I agree on the probiotics being so expensive. If you have found a "good enough" probiotic, can you share?

 

Thanks all!

[LNN]

Abx are covered by our insurance, but we have a high annual deductible, so the first half of the year, we pay the insurance negotiated price out of pocket. Once we hit the end of the summer, it gets a lot cheaper.

 

Also realized this week that many kids multi-vitamins contain the same doses as adult vitamins. It's just that they're chewable. Once your child can swallow pills, they can take an adult vitamin. I used to worry about OD'ing them on dosage. But compare labels. They're very similar.

 

Same for detox - LLMD is very big on keeping bowels moving. So we're trying a fiber mix that has pre-biotics and digestive enzymes. Only problem is that it's not really helping DS as much as miralax does - at 1/4 the price. So we're combining the two - half of the fiber scoop and half a cap of miralax. If money were no object, I'd be scooping tons of the fiber mix, but there's that furnace I mentioned...

[MichaelTampa]

I was thinking that the abx would be the easiest part of this whole thing since they should be covered by insurance. Is that wrong?

 

And Michael, I agree on the probiotics being so expensive. If you have found a "good enough" probiotic, can you share?

 

Thanks all!

 

 

Some people need IV's, and that can be $6,000 per month, maybe $600 if covered well by insurance. A lot of times, they will cover just 1 or 2 months. So, longer would be very costly.

 

For a while, my oral abx has been about $2,500 per month. Covered by insurance, perhaps $250/month after the deductible. But January and February were quite costly for me this year because of the deductible.

 

Some of the babesia meds are MUCH more expensive than the stuff I'm taking. Not everyone will get the 90% coverage I'm getting, perhaps more, perhaps less. But, definitely, they really do add up. I know that there are several people where the ins.co. stops covering the oral meds, too. Hasn't happened to me, but it does happen.

 

On the probiotics, I have stuck with Natren's, which has been very expensive for me. They make one kind with 3 types of bacteria in the same pill, but it's covered with gelatin, so I get a different version they have for vegans where each bacteria is in a separate pill. It's costly and, if I knew how much it would have been, I would have worked harder to find a cheaper one that's good. But, it's been tough to think about changing that, not wanting to mess with things somewhat, and not wanting to work at it. I did once, see in the store, PB8, something like that, one on the list my LLMD gave as good probiotics. I had never heard of it at the time, so didn't pursue, but ran into it lately, noticed it was much cheaper than what I was paying, but still not brave enough to mess with things. There really are many options there, particularly for those non-vegans!

[susie]

I was thinking that the abx would be the easiest part of this whole thing since they should be covered by insurance. Is that wrong?

 

And Michael, I agree on the probiotics being so expensive. If you have found a "good enough" probiotic, can you share?

 

Thanks all!

 

For probiotics, VSL3 DS packets are a prescription only probiotic, so our insurance covers them. Each packet has 900 billion organisms and they come in a box of 20 packets. Our M.D. wrote for 1 packet/day and insurance would only pay for 1 box at a time. We got the doc to write for 2 packets/day and now we get 3 boxes per month. If it works for you and insurance covers it, it's the best price for the potency. I don't believe that they are a human derived probiotic strain like the Pharmax/Genestra products and Theralac though. I like the human derived ones the best, but they are so very expensive.

[MichaelTampa]

A couple other ideas:

 

- keep records of all the expenses to tax deduct, even supplements, if purchased upon recommendation of a doctor for treatment of specifically diagnosed medical condition, can be tax deductible

 

- some meds are actually cheaper compounded than they are in pill/capsule form, although less convenient

 

- of course, there are the foreign/internet pharmacies as well

[Suzan]

- keep records of all the expenses to tax deduct, even supplements, if purchased upon recommendation of a doctor for treatment of specifically diagnosed medical condition, can be tax deductible

 

Yes! I totally agree. This makes a huge difference in my tax return. I save recipts for all supplements and at the end of the year get a list of all out of pocket medical, dental and pharmacy payments.

[Suzan]

Our abx are covered by insurance so it's "only" $5 each but 7 prescriptions times 3 people starts to add up. Abx for us are the least expensive though, it's the supplements that really start to add up. Switching to NSI Synergy 3000 helped me cut out a few pills so that helped my pocket book and my pill box! I search the internet to find the best deals.

 

I agree with only getting what your child will take... dd8 can't swallow pills so we just stick with Threelac for the probiotic even though it's expensive. She likes the taste and takes it w/o a fuss. Since some of the herbs taste so bad, I don't even try with her.

 

This year, I have worked it out so I save my tax refund and use that to pay all our medical bills and supplements. I'm hoping it holds out all year so I don't have to add anything to my credit card like I have been doing.

 

Susan

[matis_mom]

I was thinking that the abx would be the easiest part of this whole thing since they should be covered by insurance. Is that wrong?

 

And Michael, I agree on the probiotics being so expensive. If you have found a "good enough" probiotic, can you share?

 

Thanks all!

 

For probiotics, VSL3 DS packets are a prescription only probiotic, so our insurance covers them. Each packet has 900 billion organisms and they come in a box of 20 packets. Our M.D. wrote for 1 packet/day and insurance would only pay for 1 box at a time. We got the doc to write for 2 packets/day and now we get 3 boxes per month. If it works for you and insurance covers it, it's the best price for the potency. I don't believe that they are a human derived probiotic strain like the Pharmax/Genestra products and Theralac though. I like the human derived ones the best, but they are so very expensive.

Wow, I have to inquire about this probiotic. That alone has been really throwing our budget way off, but what can we do... Maybe if we could get at least some of the probiotics covered, that would really help. But I can't complain too much because our insurance has been so good, thank God!

 

But just to add to the list of hints, shop around for supplements. Sometimes you can save 30 to 40%.

Also, be honest with your doctor as to where you are standing financially so he/she can help you determine which are the priorities.

 

It's so hard on top of the stress of dealing with sick kids to have to stress out about $$$

[pixiesmommy]

When I buy things online, I go through ebates.com and then drugstore.com or vitacost.com and then I get the cash back. I also search for codes each time for a coupon discount or free shipping. Most times I can save at least $20 like that.

 

I did not know the supplements were tax deductible if recommended! That is great to know.

 

We use PB8, Pearl and Florastor combo here. I was advised to change this up every 3 months or so since you should alternate strains of bacteria.

[FallingApart]

ATHanks for the advice of ebates, etc. I was assuming I would have to buy everything through the LLMD, but it is great to know I can internet shop!

[GraceUnderPressure]

 

For probiotics, VSL3 DS packets are a prescription only probiotic, so our insurance covers them. Each packet has 900 billion organisms and they come in a box of 20 packets. Our M.D. wrote for 1 packet/day and insurance would only pay for 1 box at a time. We got the doc to write for 2 packets/day and now we get 3 boxes per month. If it works for you and insurance covers it, it's the best price for the potency. I don't believe that they are a human derived probiotic strain like the Pharmax/Genestra products and Theralac though. I like the human derived ones the best, but they are so very expensive.

We have a fridge shelf full of VSL DS packets covered by insurance! Unfortunately, the packets smell a little, well, pardon the expression but for lack of a better one - barfy.

We had to mix it in so much juice to mask the taste that it was impossible - ds is prone to as well as reactive to candida & can't have that much sugar (I don't mean cane sugar - it's natural juice).

What are you mixing yours in?

 

Our PANDAS dr told us that he feels Custom Probiotics is better, but it's also a powder & I'm leery of spending more money for something we can't use. DS can take a bunch of capsules if he has to, but the powder form is so much more cost effective - wish I could find a way for him to take it!