posted
I am new to this site, but I am not new to Lyme Disease.
I had struggled with over a dozen years of doctors, specialists, being told I had everything from lupus to MS to RA to "it's all in your head" and then being treated for that, and in the meantime I never got any better, just kept getting worse.
I took medical leaves when my symptoms would rage.
Finally, in 2007 when I got really bad and couldn't remember alot of words (this was bad, as I was a teacher), where I lived, etc, I was finally told by someone I had worked with that she thought I might have LD and should see a Lyme specialist.
Her son was being treated by an LLMD about an hour away from me, and she said he was very good.
This doctor was indeed a really good LLMD.
I had my first real bloodwork from Igenex and the Lyme bands were just positive everywhere. He told me I probably had it for over 15 years!
We started treatment, lots of antibiotics and supplements.
Then, 3 months later my health insurance dropped me. This was in early 2008.
I could not afford to buy another plan, so I started using my savings and such to pay for treatment.
By 2010 I went through all of it, still had thousands in medical bills in arrears, and eventually lost my car and had to declare bankruptcy.
At that point I stopped treatment completely.
I found a job as a home health aide, which is what I still do (I do not see myself being able to go back into a classroom).
I am on my own.
I do not have any relatives left other than a brother whom I have not seen in over 20 years.
When I do call him, he acts as if nothing is wrong, offers to help, and then I do not hear from him again.
I do not have any friends left, as my old co-workers have moved on with their lives.
My neighbors in my apartment building are basically guest workers for the various businesses in the area, they come and go every few months, do not really talk to anyone.
I did approach my church, they basically sat me down with a "financial consultant" who told me that I needed to "start saving".
Then I was told that the reason I was not doing better was because "my faith wasn't strong enough" and that I needed to "pray more".
So, no, there are no real offers of help there.
My job gives transportation to the patients' homes, but I have no transportation of my own. I walk, take bus, cab, etc.
I am pretty self-sufficient, but I wish things were easier. It is hard, and it is hard doing it alone.
Whew! Anyway (sorry for going on with the whole story!),
the reason I am here is that I am in a relapse of Chronic Lyme ----
pain in my joints, neck, back, hip, knee; problems swallowing food as well as with my gall bladder; extreme fatigue;
some word loss; get out of breath and exhausted easily; have problems staying asleep; some moments of bad depression.
I do not have health insurance, and am not eligible in my state for Medicaid, so I have no coverage.
I cannot afford to go back to my LLMD, or the medications that I was on, and I do not want to go back into the debt that I had been in before.
So I hoping to get some relief in some other way.
Does anyone have any suggestions about supplements, alternatives, etc that they have found helpful for their symptoms?
Or any suggestions in general? I would appreciate it! Thanks.
-------------------- "The only thing we have to fear is fear itself..." Posts: 17 | From New Jersey | Registered: Apr 2013
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posted
Flying, check into county clinics or low cost clinics. They may not be able to treat lyme, but if you have health challenges that come up,they are there. Some have there own low cost pharmacies. I see my llnd occasionally and have used my low cost pharmacy for antibiotic rx s. If you need specific meds, try the drug name and patient assistance in google or your search engine of choice. Try your housing authority for low cost housing, get on social security disability. I don't have a name of an attorney to help you with disability, maybe someone here on the discussion boards know about New Jersey. If you have any acupuncture schools or naturopathic schools, you could start there. Let us know how you are doing.
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
FBS, So sorry you've had such a rough go right now, and I'm very sad that you feel so alone in this.
You are a person with trials that people can't really see or understand. My heart is w/you, as I've been a teacher for decades, and I had to go on leave in Nov.
Ideas, find a doc in your area and spill the beans. Ask for samples, ask for a low cost pharmacy. If you're near a university town, check for a teaching hospital since they sometimes have clinics.
Next, read the sites Lymetoo has above. Think back to what helped you most last time. Good probiotics no matter what. Sauerkraut or other fermented veggies. Magnesium. Vit B & C & D, black walnut, a good parasitic, etc.
Then, look for a local support group. If there isn't a Lyme group, maybe even a grief group (think of all you've lost). Personally, I would go church shopping.
Find a church that accepts people where they are. Once you find that, make connections through offering to help w/setting up, the nursery, etc. I realize you can't always predict your ability to help, but giving helps you in many ways, when you can.
Look at your local library for a book club to get involved and connected. See if you can go into a nearby school and read to kids once or twice a month. BTW, I understand how isolating this s****y disease is.
Be open and honest once you've made a friend, but also remember that that person doesn't want to see you as a disease, so be sure you find ways to just do things together, even watch tv, cook a meal, etc.
I admire you. You are strong and brave. Look at what you've made it through. I've said a prayer asking that you find a good friend or group to be the family you can create when our biological one is absent. Hugs.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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