Scared newbie diagnosed VERY late in the game

Hi, lifelieswaiting - welcome to our community!

Your previous diagnoses - I also was diagnosed with thoracic outlet syndrome....my very first symptom.

I'm glad your Practitioner is pursuing lyme disease...because it does sound like it - based on your history and constellation of symptoms.
Would she be knowledgeable enough to treat you...?

If you can't afford a LLMD, and you're interested in using herbals instead of abx, you can always self-treat if you have no other means.

There are many members here who are in that situation.

One of the popular treatments is Stephen Buhner's protocols. You can buy his book(s) and order the herbs online.

We encourage all new members to read through the thread at the top of the page titled: "new to Lyme?..Start Here!"
It's packed full of useful information.

Welcome Lifelieswaiting,
I 'm so glad you found this forum. I understand how you feel and what you have been through.

Besides have Lyme , I also suffered from a severe pain disorder. No fun.

It is scary and stressful when we are faced with battling an illness. But like Girlie said , become knowledgeable.

There is a lot of good, helpful support that you will find here.

Stay strong and keep focusing on getting healthy. You can do it.

Try to find local support groups or resources in your state that might have help with financial issues.
Lymenet.org has state links I think.

Take care, Jo

Welcome! Do you mind if I ask where you are located? Folks have already given you a lot of advice.

You can self-treat. But if you can see and LLMD, even once, that would help to outline a plan. Insurance will usually pay for abx initially, so you can do that for a while until they decide to stop paying. Then, as others have said, you can order from India or elsewhere.

Or you could self-treat with an herbal protocol like Cowden or Buhner.

For me antibiotics are cheaper because my insurance pays 80% of the cost - so it all depends on whether or not you have good insurance.

julymorning said...
And are in the U.S. or Canada.

I thought some insurance plans in the U.S. pay for prescriptions?


I think I was confusing...

What i meant was the antibiotics are cheaper than the herbals because my insurance pays 80% of the cost...where the herbs are not covered at all.

One order of herbs is usually over $100 for me.

Girlie said...

julymorning said...
And are in the U.S. or Canada.

I thought some insurance plans in the U.S. pay for prescriptions?


I think I was confusing...

What i meant was the antibiotics are cheaper than the herbals because my insurance pays 80% of the cost...where the herbs are not covered at all.

One order of herbs is usually over $100 for me.

For a non LLMD, you know the abx prescriptions are fairly useless unless one is very lucky and/or catches the infection immediately.

I have no idea how to get insurance to pay for a prescription an LLMD writes, because someone has to put in a reason for the 'script. The whole problem is getting enough abx to heal with, unless it's written for something other than Lyme, like for instead acne infections.



So, the bottom line is, if you need 22 months of abx, no insurance company I know if is going to cover it.

Well yes. How do you think it is that Drs are being sanctioned for prescribing too much for us?

Everything that is ordered, prescriptions or tests, have to have a medical reason for it before they(insurance) will ok it.

The only reason I even got Flagyl and Amox was because he got creative and said he was prescribing it for something else. He had told me that day that he could lose his license or get sued if he prescribed beyond the 2 consecutive abx he had written for me previously.

Post Edited (julymorning) : 3/11/2017 10:46:40 PM (GMT-7)

One of my friends had lyme for forty years and just entered remission she pulsed abx for two years

Hi Lifelieswaiting!
Welcome to our community! I'm so glad you found us.

I was undiagnosed for 40 years and still healed (that was the first time I was infected), so it's all about getting your body functional again so we can heal.

I would suggest that you start by cleaning up your diet (if you need to) - no sugar, low carb and high lean protein and tons of veggies to help get the nutrition your body needs and start detoxing. As the bacteria die, the release toxins, which cause all kinds of havoc in our bodies.

You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum. And this is another really good resource for detoxing ideas for Lyme patients:
www.tiredoflyme.com/detox-methods.html

But, there is such a thing as over detoxing. This happens when we move more toxins than our body is capable of processing out effectively. Many toxins are stored in our tissues, and by detoxing, we move them to the bloodstream where we can process them out of our bodies through the lymph system, then on to the liver and kidneys as so on. We have to be sure to add in more detoxing routines slowly and carefully, or we will end up herxing just like we had never been detoxing. This article helps to explain that some: www.tiredoflyme.com/4-reasons-why-you-still-feel-bad-despite-detoxing.html

Hang in there and keep asking questions! And, remember that this is a marathon and not a sprint. These bacteria have longer replication times, so it simply takes longer to treat and heal the body.

Thank you Girlie, goshawk, bluelyme, mm57553, julymorning, astroman, jennydancingfish and Traveler for commenting.

Girlie,

Interesting that you were diagnosed with thoracic outlet syndrome too. Saying no to the surgery they recommended for it was one of the few correct medical decisions I made during my history.

Regarding my practitioner, she's a Lyme-literate nurse practitioner who splits her time between two medical practices; one which accepts insurance, but only does very mainstream medicine (where I saw her) and one that doesn't accept insurance, but which is open to diagnosis and treatment of chronic Lyme disease. She's sending me very mixed signals. On the one hand, she told me that she "doesn't like to treat Lyme" and urged me to find an LLMD, even going so far as to suggest that I fly out of state to see a good one. On the other hand, she offered to see me for free during her lunch at the practice which doesn't accept insurance. The cost of the treatment itself, of course, wouldn't be free.

She gave me lots of recommendations; too many really. My head is spinning. One of them was to purchase Stephen Buhner's book, Healing Lyme, and read it cover to cover. I plan to do that.

mm57553,

I'm in Texas Hill Country, but originally from Maryland. I have family in North San Diego County and South New Jersey, so if I needed to travel for treatment (hopefully not!), those would be areas where I'd have some place to stay. ILADS has given me the names of three LLMDs in my area. I was even told that one of them accepted insurance, however a call to that office revealed they stopped doing that on March 1 of this year. Figures.

Traveler,

I'm really happy to read that, despite being undiagnosed for 40 years, you still healed. My tick bite was 38 years ago, so it gives me some hope.

Regarding diet, I've read that no sugar/no gluten/no dairy/organic fruits and veggies/only whole food ingredients is an ideal diet for Lyme. Well, my diet's not that perfect and it probably never will be due to both financial reasons and physical limitations, but it's still a pretty good diet.

I'm entirely sugar-free. I mostly use local honey for sweetener and sometimes real maple syrup. However, I confess that if someone hands me some chocolate, it's going to get eaten. I'm gluten and carb light. No potatoes, pasta (except for Tinkyada brown rice pasta), white rice or bread (except for organic pizza crust every once in a while). Giving up dairy would be really difficult for me, but I at least make sure the dairy I buy is organic/hormone-free/antibiotic-free. I'd like to say that all of my fruits and veggies are organic, but I can't quite swing that budget-wise or availability-wise. I make sure that things like strawberries are organic since they really absorb pesticides. My leafy greens are always organic. Other stuff is organic as much as I can swing it. The situation with meat is about the same. I can't afford to do free-range/grass-fed, but I at least make sure it's hormone-free/antibiotic-free. Thank goodness for Sprout's as I definitely can't afford to shop at Whole Paycheck.

I know about herxing and detoxing in as much as I've heard about it from friends with Lyme and have read about it over the past two weeks, but I suspect that's a far cry from knowing about it through personal experience. I confess that the notion of it scares me a lot. I already feel so completely terrible. It's difficult for me to imagine feeling any worse and still being able to take care of the daily tasks of living. I'm guessing this is an area where I'm really going to have to listen to my body as it lets me know what it can handle and what it can't.

Everyone,

I'm still very ignorant about all of this. I'm doing my best to come up to speed as quickly as I can, but it's going to take some time. The information's out there, but between the cog fog and the never-ending headache, I can only absorb so much. The part that really has my head spinning at current is herbal treatment versus antibiotic treatment. I gather that compelling arguments can be made for each one and that many people do both at once. My problem is that I have just enough knowledge (ignorance) to hold two conflicting beliefs and they are these:

1) I have spent the past eleven years of my life trying to come off of all of the many pills I was on. The benzodiazepines, in particular, were brutally difficult to come off. My battle with benzodiazepine withdrawal syndrome was probably what knocked my body low enough for Lyme to really get a toehold and begin advancing on me. Then, the hormonal imbalance of perimenopause acted like a bucket of gasoline on that particular fire and really cranked things up. This downward spiral is what led me to pursue functional medicine and, finally, arrive at my Lyme diagnosis.

The thing is, I have spent the past two years diligently pursuing functional medicine; battling to get the unnatural crap out of my body and fighting off a suspected case of candida overgrowth. It's very difficult for me to come from that background and contemplate putting antibiotics into me every day for, oh say, the next two years. I can't even imagine the damage that would do to my microbiome. My every instinct is telling me that would do me permanent damage.

2) However, as I mentioned, I have friends with Lyme. One of them is truly ill with the disease. It's likely that she'll lose her battle one day in the not-too-distant future. So I KNOW not to underestimate this disease. As much as I hate the idea of antibiotics and would definitely prefer to go the all natural route, I don't want to gamble with my life.

My symptoms are so scary right now. Sometimes the only thing that keeps me from running to the emergency room is that I know there's not really any help for me there. Yet I'm feeling the overwhelming urge to do something and do it quick. This is not an ideal mindset for making good decisions.

Thanks for reading and sorry so long.

Post Edited (lifelieswaiting) : 3/12/2017 1:44:41 PM (GMT-6)

Hi, Well you live in one of my favorite areas. Texas Hill country is just beautiful. I try to get down to visit enchanted rock outside of Fredricksburg when I visit my son near Waco. It's a amazing.

Buhner's 2nd edition "Healing Lyme" is the best thing I ever bought.

Not only are there protocols for healing, but there is very important information in the other chapters about repairing the damage that has been done to parts of our bodies.

You can also type in Buhner's Lyme protocol on line and you should be able to access it.

At first my Gen Prac. didn't think I had Lyme and wouldn't prescribe doxy. This book helped me so much while I searched for an llmd.

Other books: How can I get Better?By Richard Horowitz M.D. and "Unlocking Lyme:Myths,Truths and Practical Solutions for Chronic Lyme by William Rawls M.D.

Hope this helps, stay strong and Take care , Jo