Do I just roll over and die right now? Not like I haven't been trying to get better w/treatments from several LLMD's and MD's over 18 years.
I think I might have to just accept........no money to treat after losing my job and savings.
Sad, isn't it?
Oh dear........have doc app't on Tuesday, so what do I say? Or do I just ask her, "WHAT DO YOU SAY?"
just me.......praying for all of you while I lay in bed 20 hours a day. RX's don't seem to help, I went gluten free, etc, etc,........
Posted by In19944 (Member # 34272) on :
Don't feel alone. You aren't the only one. There's a few of us who have LOTS of infections. I think...time to try alternative therapy.
I'm only a few months in and thinking of going to an alternative. Can't live my life battling lyme and many many co's. Gotta go outside box.
Posted by sammy (Member # 13952) on :
Some of your list can be treated simply. Some may need some serious follow-up like the abnormal parathyroid levels.
Prediabetes can often be treated with diet. H-Pylori and the ulcer it created can be treated at the same time as Lyme and co's with generic antibiotics.
The biggest problem is the no money to treat after losing your job. I'm so so sorry. You are probably too sick to work now too, right?
Maybe if you don't qualify for medicaid you can apply for prescription assistance through individual pharmaceutical companies.
This is a good website that can help guide you, see if you might qualify for various forms of assistance: http://www.benefitscheckup.org
Don't give up. Even if you can only take a $4 RX med each month and that's it. One at a time whatever you can do. It's better than nothing.
I would also keep praying. I believe that God can do things that we can't.
Hang in there. Please don't give up.
Posted by hadlyme (Member # 6364) on :
Don't give up. Easy to say the words, but you do only get one life here on earth, so please try all you can to take care of it.
You can do things that do not cost so much and still get better.
Diet like others have said, can do huge things for your health. Try the low fat diet as others are getting better on it even if you haven't been tested for FL1953, it does 'work' for most people that have babesia. Just eat 10-15grams or as close as you can of fat grams. No oils, no nuts, just whole foods like veggies and low fat things.
There is away you can treat this. As Sammy stated, there are alot of pharm. companies willing to help.
Do you know of a lyme support group in your area? If you don't, find one! They are your best support in info on everything you will need. They have been through every 'hoop' before you and can lead you towards the right things.
We all have wanted to quit treating this at one point or more....so you're not alone in what you are thinking.
Posted by randibear (Member # 11290) on :
Humaworm and herbs might help and a lot cheaper than meds
Posted by Lymetoo (Member # 743) on :
Get on the Lyme diet and then order Buhner's book on herbs.
Self treat!
Posted by Keebler (Member # 12673) on :
- Buhner's book is excellent. If you don't have that, see if your local lyme group has a copy to lend. Some libraries may have it, or via inter-library loan.
Appt tomorrow: your doctor should give you Rx for the malaria. That's the first order of business.
The ulcer is likely from the h. Pylori. That, too, is something that your MD should prescribe a precise combination of Rx - now. Very treatable now that they know what it is.
Food choices also matter now. A blender should come in handy to blend your foods for a while. JUICE if you can, but not too much at one time as the sugar content can sneak up on us.
If you don't have a juicer, you might borrow one or use a blender with water and slightly steamed veggies that are softer.
DGL can help ease the stomach pain. Slippery Elm, too. Cheap in bulk powder. Make a gruel.
As you've been at this for six years, the tick borne infection mix is likely not a new surprise but can make everything else harder -- yet -- the malaria treatment may help in many ways.
And malaria is certainly something most doctors understand, though, if you have a LLMD, best to have their guidance.
Mycoplasma is also something a LLMD is more likely to "get" - but even some MDs may with the tests and Nicholson's works.
Google: Nicholson, mycoplasma p.
Many of the other things can be addressed by a good diet. Everyone with lyme has to be concerned about the elevated risk of diabetes as lyme, like many infections, can be a precursor. Education can help turn that around.
Prediabetes is not alarming but a good wake up call to just be consistently careful with food choices and timing - and whatever movement is possible, even is slow and low impact.
Be sure you have right balance of food from all categories. Don't forget the importance of protein - and those essential fatty acids in foods. Both help to balance blood glucose.
Rather than feel like this is an emergency, it may help to see it as a way to better define priorities.
With the malaria and h.Pylori soon to be addressed, all else should get easier.
Even with very little or no money other than for basic foods, there are ways to prioritize. Many foods do help the body to heal. If that's the best we can do, we just do the best we can with that.
However, certain herbs can be bought "sifted" "raw" or "bulk" and you can boil for tea. This is less expensive and could fit into a food budget.
It may not be ideal but we all have to just figure out what's the best we can do with what we have. It's possible to still be very proactive and that momentum of personal power is vital.
Start with Buhner's book.
Then, from library, books: The Cure is in the Kitchen; A Spoonful of Ginger. -
Posted by Keebler (Member # 12673) on :
Suggestions for When You Need Treatment and Funds Are Low
------------
Find all the area lyme support groups and be sure to connect, attend lectures, etc. If you can't attend, get on their mailing list and keep up with their guest speakers - read all they've written, etc.
Find all the area Farmers' Markets - and ask farmers what herbs they may grow, too. Some culinary herbs have healing properties.
You'll probably need to avoid raw garlic, though, due to the ulcer (though some say that can help, it can also burn a hole right through compromised stomach tissue). -
Posted by glm1111 (Member # 16556) on :
I think you would be a good candidate for antiparasitic herbs and the salt/c protocol, especially since your sodium is low. Parasites/worms play a MAJOR role in Lyme disease.
This is what turned the corner for me and gave me back my life after 4yrs of abx. The herbs and salt/c and very inexpensive.
Check out the lymestratgies website for the salt/c protocol and do a search on here for parasites. Agree with Keebler about looking into Buhner Herbs.
Gael
Posted by Keebler (Member # 12673) on :
- Be sure to check with your doctor regarding timing and content of anything else you do - especially with the treatment now for
malaria and h.Pylori
---------------------
Gael's suggested link. You might be able to borrow the book.
HUMAWORM -
Posted by sixgoofykids (Member # 11141) on :
If your sodium and chloride are both low, use more salt. My LLMD had me salt everything!! That should help to balance out the potassium.
I would also do the Lyme diet, as suggested above.
Anti-parasiticals really helped my GI symptoms. So did rebuilding my gut with probiotics including sauerkraut (raw, not pasteurized), kefir and kombucha.
Maybe focus on getting your body working well with diet, exercise (to your ability, I don't mean go run 10 miles!!), sleep, etc. Then from a point of strength treat infections. Look at the whole picture, not just killing bugs ... rather rebalancing yourself.
Posted by Catgirl (Member # 31149) on :
You are definitely not alone. I have many things on your list. I was sadly overwhelmed after one of my tests showed so much. But I realized that there were people in much worse situations than mine, so I chose to keep plugging along and refused to feel sorry for myself (not that you are by any means).
So many good ideas have been posted here for you. Salt/C, humaworm, Buhner, lyme diet (something you can control) and exercise (Burrascano's light weights).
I heard Aloe juice is soothing on our digestive systems (it works on the inside like it does on the outside). Mastic gum helps with hypolori. Herpes--stay away from foods that aggravate it.
Hang in there!
Posted by AuntyLynn (Member # 35938) on :
There is also charity care. As long as you have a diagnosis, which you do, most hospitals offer some sort of financial assistance.
Herpes ... heck, prolly 20% of the population carries that around in one form or another.
fatty liver ... can be cured with diet, livers do regenerate, unlike other organs.
H Pyolori & Gastric ulcer, basically one and the same. As others pointed out, an easy cure with abx these days.
Plenty of others here have conquered Lyme, Bart, Erhlichia and Babs. In fact Dr. H. recommends an African herb root for Babs which is used there to treat MALARIA! So you might be able to hit both of those problems with one cure as well.
Someone mentioned naturally fermented sauerkraut (for the ulcer) an excellent suggestion! Anything naturally fermented adds enzymes and probiotics - both healing to the digestive system. In fact, I met a man who SWORE he cured his ulcer drinking raw cabbage JUICE! (You need a juicer) I tried it, and he was right - it actually tastes sweet!
Please don't feel defeated! Having a definitive diagnosis is at least HALF the cure! NOW your doctors know how to proceed. And... much happier days are likely ahead.
May you rise up with wings, as eagles.
Posted by lpkayak (Member # 5230) on :
i didnt read all the answers but at one time or another i have had all the things you have and i dont really think i am one of the sickest ones
i would not give up
deal with the ones that meds work for right away...and supps need to be adjusted
then just plug away at the infections...
i was able to stop virus's with anti viral supps
good luck...
Posted by healthywealthywise (Member # 8595) on :
Thank you all.......after being so sick...this is the only place I feel safe coming to for answers.......
I have to go to doc tomorrow, but how the heck do I make myself get out of bed to do that dance again?
My husband said this time "he's going in with me". Realizes I put my "fake front" for her.........but me, being a type A from way back, he wants to confront her. What exactly has she done to make me better?
Dang, telling him, it's ok to talk w/me, being my advocate, but don't be mad at her. Docs don't know everything.
First thing he wants is to get me off Ambien......and the Zoloft first docs put me on so many years ago.
He wants to go back to basics.....get rid of this pharma crap in my body, then build it up!
I'm going to ask about Bicillan shots........seen so many good things about it. Don't care if injections hurt, but not sure what benefits it has?
So sure doc will give me the "side-eye" and blame ME for not getting better.
Guess you have all been thru it? No lyme support group in my area. I tried to find and woman I spoke to asked ME if I could lead a group. Uhmm, hello? I can't even get out of bed.
Just me
[ 06-04-2012, 11:40 PM: Message edited by: healthywealthywise ]
Posted by randibear (Member # 11290) on :
I was called morbidly obese and told to loose 100 pounds.
Heck at least that's not on your list!!
Posted by healthywealthywise (Member # 8595) on :
Randibear!!! So funny.......at first I was told by both a neurologist and first GP who got it wrong.......
"Well, a woman of YOUR age should expect...."
I was only 35 then. almost clocked him.
Was told to exercise for weight gain and fatigue.
Wish every one of these docs could spend an hour in OUR bodies to see what it feels like.
I'm not an evil person, actually quite the opposite, who prays all of the time for people.
BUT FOR EVERY DOCTOR WHO BLAMED ME...I DO WISH LYME AND COS ON THEM.
Well maybe that does make me evil now. Don't care.
What is the first thing of doc code? FIRST, DO NO HARM?
Oh now I get it, do nothing and you can't be sued for malpractice. It would be funny except for all of us who continue to suffer by their inexperience or ineptitude.
Sorry, good to rant once in a while.
Just me....
Posted by sk8ter (Member # 8671) on :
The parathyroid is a major issue...pls go to parathyroid.com and read up there on levels..What is your calcium and PTH scores? PM me if you need to.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by AuntyLynn:
Herpes ... heck, prolly 20% of the population carries that around in one form or another.
I recently read that it's closer to 90%!!
Posted by healthywealthywise (Member # 8595) on :
sk8ter, I do take thyroid meds as I had 1/2 taken out 16 years ago....I do take thyroid meds every day, so I guess it's the least of my worries. But thank you so much for caring.
It was actually the first along with the dizzying fatigue that I sought a doc for.
Doc kept feeling my neck and said "you're good". It was only 3 years later when his intern said, go get an ultrasound. Did and found I had an internal goiter growing against my esophogous...main doc NEVER said he was wrong. Creep.
He's also the one who screamed at me when I was finally diagnosed.........YOU DON'T HAVE LYME!!
This, after all the bloodwork from another doc proved I did.
Should have sued him right then. In past few years, I've heard from many local folks he said the same thing to them. And after quitting him, they were confirmed and sought help.
Why does he still have a license? These creeps never get their due. He's the main one I wish would get it and then listen to him cry like a baby!
Oops, evil side coming out again......sorry to all of you for that, but NOT for wishing him payback.
Just me
[ 06-04-2012, 11:36 PM: Message edited by: healthywealthywise ]
Posted by Pinelady (Member # 18524) on :
Pos. for all that I don't think they should have a problem getting you treated by the state!!!
Posted by Lymetoo (Member # 743) on :
I guess your husband has NO CLUE how hard it is to get off an SSRI like Zoloft. And if you can't sleep on your own, how will you sleep/function?
This worries me (for you.)
Posted by lpkayak (Member # 5230) on :
i like your husband!!!!!
Posted by healthywealthywise (Member # 8595) on :
Trust.......I won't change any meds until I talk to my MD. I also have really good relationship with my local pharmacist, who watches for interactions for any new meds prescribed.
appreciate all of your guidance and suggestions.
now on my way to bed, to sleep, perchance dream of a better day for all of us.
Posted by seibertneurolyme (Member # 6416) on :
No time to read all of the responses right now. But I do want to make a few brief comments.
First -- I think it is a good sign that you tested positive to all of those infections. It means that your immune system is actually recognizing the infections and still producing antibodies to fight them.
Second -- you obviously have a very good doctor -- many LLMD's would not have tested for everything that you were tested for.
Third -- I would ask the doc to explain his treatment plan in as much detail as he can before you start treating. I think it will help you to stay focused if you know what the plan of attack is. But do expect changes as you go along.
Finally I think you need to understand that IV Rocephin is primarily a lyme drug -- many of the infections you have each have their own specific meds that will only work on that infection. Docs are much more aware of the coinfections than they were years ago.
There is always hope.
Bea Seibert
Posted by canbravelyme (Member # 9785) on :
I will add that one can go a long way on doxycyline, and that is available through drug manufacturers' compassionate care programs. As Bea said, your doc may have some answers for you
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