I am new to Lyme and have read about antibiotic treatment and now naturopathic treatment. Every time I read about a particular treatment I find myself thinking, "Wow, that makes a lot of sense. Maybe that's what I'll do." But I'm just not sure what the best approach is for me.
I have had undiagnosed/untreated Lyme for 14 years. I have state insurance and no income. I am barely functioning right now, and feel like I need to make the right decision about treatment the first time; there's no time to waste.
Knowing what you know now, what would you do?
Posted by Keebler (Member # 12673) on :
- Get a EXPERT's advice - someone who will do the clinical exam, look at your symptoms and history - see how you talk, move, walk, process information, etc. and see what the EXPERT has to say regarding the plans that got others better.
You need the eyes, ears, brain, heart and inner wisdom of a real doctor (LLMD OR LL ND) who has treated thousands of others. You need someone who is very well educated in the science of lyme and other stealth infections.
Most naturopathic treatment also relies on antibiotics at one time or another for many patients. There is no ONE path -- no allopathic only or herbal only. It's usually a very tricky dance incorporating medicines/supplements that will work precisely against infection and support & protect your body along the way.
Have you consulted a ILADS-educated LLMD? It's really important to get an expert's opinion. There are also ILADS educated LL ND (naturopathic doctors) in some places.
Talk to your local lyme support groups for all the options in your area.
Good luck. -
Posted by 17hens (Member # 23747) on :
I just answered your question in General and then saw this thread. So I'll repeat myself ------------------------------ I prayed for 9 months for the Lord to open a door for me. Every door I came to for 9 months, I tried to open, but they were all locked.
It took me 9 months to find an open door. I walked thru it and it stayed open. I called lymepa.org and asked for a recommendation. They pointed me to my LLMD.
Another door appeared the day before my first appointment with him. A new friend told me she was cured by a doctor who used only herbs and I should go to him.
I was so torn, because I thought I waited so long for my door and there it was and I was just about to walk thru it. I cried and cried. It was very emotional for me.
Then I decided I would stick with door number one and see where it took me. If it took me to a dead end, I could always try door number two.
So that's what I did. And so far, after 6 months, door number one has not disappointed.
And door number two or even number three or four will be there if I decide to open them. ------------------------------------- AND I agree with Keebler. This illness is too significant. You really must see an expert, not someone who will waste your time and money on guesses.
Posted by Lymetoo (Member # 743) on :
It was easy. I found a dr who knew how to treat and "cure" Lyme disease. I followed his plan!
Mamabear11 needs to find out if any of those specialists take her state insurance. I notice she is in Connecticut so maybe there will be some. I would call each doctor's office directly and ask if they take it- sometimes they add plans and drop plans. It is good to find out directly from the office's themselves as the people on the phone can get the most current info for you Mama.
Now, if you were MA that would be a different story!
Posted by LightAtTheEnd (Member # 24065) on :
This illness is expensive and difficult to cure, but as you've seen by waiting 14 years, it isn't going to go away without treatment.
I agree with you that we need to put our considerable investment into things that will help us get well.
I decided to start with an LLMD and antibiotics and the best help I could get, and leave the more natural options for later if either the drugs eventually don't work for me, or something happens that I can't manage to get to the LLMD any more.
After more than 8 months of treatment, I began to see signs of improvement, starting a couple of months ago.
Get the best medical advice you can (from an LLMD; nobody else's advice is worth anything), follow their treatment recommendation, and give it all you've got to make it succeed. Don't make yourself miserable by second guessing everything you do.
I reason that being on any treatment will probably keep it from getting worse, whether it's getting me better or not, so I am not losing ground by using some trial and error, if it turns out I have to change treatments later.
I also felt extremely relieved to find a doctor I could trust, so that I could leave some of the burden of making these decisions to him instead of taking it all on myself as I had been before.
Whatever you do, don't give up fighting.
It may be tempting to make your decisions based on whatever is cheapest or what you can afford, but if you have any resources to help you--insurance, family goodwill, assistance programs, etc.--now is the time to call on them.
Posted by sixgoofykids (Member # 11141) on :
Which approach seems best for you? I went with my instincts. At first I was so sick that I KNEW I needed antibiotics to keep from dying.
Later in treatment I strongly felt I should switch to alternatives.
There are many ways to treat, just be sure you treat. Go with your instincts. I worked with a professional both in treating it with abx and with treating it alternatively. You need someone to help you through it.
Posted by MamaBear11 (Member # 25116) on :
Thank you everyone for the wonderful advice! After sleeping on it and reading all of your stories, I have decided to start treating with a LLMD and the antibiotic approach. If I can, I would like to concurrently see a naturopath, but will start with antibiotic treatment for sure.
I am sure that naturopaths can be extremely well-versed in Lyme, but I can't help but feel skeptical that that route alone can help me get better after being undiagnosed/untreated for 14 years. I feel like I need to get out the big guns first and then try to heal my body after the initial onslaught.
I am lucky that I do have a family member who may be able to help me pay for my treatment. Maybe. I've already applied for a credit card through my bank, so I can charge my office visits and meds and then hopefully this person will be able to help me actually pay that off as I go....
Thanks again for your advice. It was instrumental in helping me be comfortable with my decision. Hugs to you all!!!
Posted by Lymetoo (Member # 743) on :
Sounds like a good plan to me!! Posted by Keebler (Member # 12673) on :
- I'm glad to hear that you will soon see a LLMD.
If you can talk with your family member first, and arrange help as you go - they may be able to help you prevent massive interest charges that can take forever to pay off.
You might see if a local college business department has some financial planning clinic to advise you on how to avoid interest charges.
Also, you can deduct your medical care but not the interest payments. You can deduct mileage and lodging. And the supplements that your LLMD prescribes (as they are to help with a specific condition). You'd need documentation for your tax returns of the prescription and the receipts.
There will be other things that a trained CPA knows. A CPA trained with medical matters would be even better.
Maybe the family member who will help you can go with you to a financial planning appointment. First, though, call your local lyme support group. The may have put on such presentations or have some suggestions for you. -
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