posted
Hi everybody!! I don't have any "one" particular medical question, so I hope I am okay posting this under medical questions...
I am guess I could be considered still somewhat of a "newbie", as I haven't been here long, but I am totally overwhelmed by all of this..
I have read the "newbie" information and found it very interesting and helpful, but at the same time, very confusing...
At this time, I have only been diagnosed with Fibromyalgia and have been out of work, due to my symptoms, since June 2006.
It was after researching Lyme Disease online, after having to take my 13 yr old to the ER for removal of a tick that I couldn't get, that finally believe I have my answer... LYME DISEASE!!
It was also after doing the research online, that I remembered having a rash (bulls-eye) when I was 17, though I also remember just thinking that it was ringworm.
But now that I am sure thats what it is, I have asked questions here and gotten some great answers, but still no official diagnosis..
My PCP has tried to work with me, and even ordered an ELISA, though I was pretty sure and right, that it would be negative...
Now, I feel that my only choice is to see an LLMD, but I am only getting Medicaid and have no other insurance, so seeing the one I want in Rhinebeck, requires money up front, which I have been trying to save for..
I have decided that unless I develop any new symptoms that make me feel like I am dying, that I am not going to the doctor's office, until I can afford the LLMD...
So, I started reading some of the information on changing your diet, herbal remedies, etc. to help until that time.
The problem is that I don't understand ANY of it!! I know that it is because of my "neuro" symptoms, but there is just so much information and I can not make sense of any of it...
I am sorry if I am sounding really dumb here, but this is frustrating, especially for someone who used to do taxes for a living...
Even the things that I would like to try, we can not afford to buy them.... My b/f is the only one working.. I get Social Service help and foodstamps, but we are barely getting by and foodstamps helps, but does not begin to cover the cost of trying to eat right...
I know that some would say that my health is most important, and I agree to a point, but the trailer is almost paid off and I refuse to let the payment get behind and lose it.
But then when it IS paid off and we only have to pay lot rent, I know I am going to lose some of my cash assistance because of it...
How do I understand the best way to try to treat myself until I can get to the LLMD... I need something easy to follow and not expensive!!
Help!! I feel like I am losing my mind...
Ellen
Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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Greatcod
Unregistered
posted
Sorry to hear that you are in a such a difficult situation. And this board is very confusing, for almost every one. I think it would be useful if you stated the approximate amount of money, say per month, that you could afford to spend on treatment before you see the LLMD.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I would find a CHEAP LLMD- they ARE out there- my LLMD takes MEdiCare and the local MediCruz and there MUST be someone near you who does too!! Look in Seeking Doctors and write that you need someone who takes MediCare!!!
You sound perfectly smart to me!!! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I know that feeling. I have found to limit how much i reasearch at one time. keep a notepad with questions i want to address eventually.
and take some time to let it sink in b4 moving on too quickly.
for me i know i wanted answers, all of them now so i could get cured and move back into my life, i was so excited to finally figure out what it was!
then reality hit and i got pretty depressed and angry...
you know it took me a long time to get here, but i got here and little by little i am "getting it" more and mroe. the answers are coming and they will come for you as well.
i dont believe we ended up here without a purpose in the end so your answers will come too.
as for the medical/money issues, you are in a tight spot. i actually ahd an argument with my mother the other day about money.
going to start on IV abx and she says "i think you need to wait until you can afford it" needless to say i went off on her
i simply told her #1 i have lost enough time to this disease #2 i want the best tx i can get #3 if i have to beg, borrow or steal i will find a way to do it #4 if i dont do something to get
better i wont be able to afford much of anything for the rest of my life, however short that may end up being. #5 it isnt an option, not for me.
i proceeded to ask the ultimate question:
If i was just diagnosed with cancer, would you tell me to wait until i could affor chemotherapy?
Boy that shut her up!!
sorry to make this rant of my own...not what i started out to do
i guess if there is a will there is a way but dont EVER give up and dont accept anything less than the best for YOU!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Greatcod
Unregistered
posted
Here's a doxy price..you could dose yourself 300mg per day for a month for $24.00 plus shipping.
Doxycycline Hyclate - 100 mg. strength - 100 capsules Pharmacy quality doxycycline hyclate - LABELED FOR BIRD USE
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
CJ- GREAT question- sorry you had to ask it:
If i was just diagnosed with cancer, would you tell me to wait until i could afford chemotherapy? *************************************
This is a site with inforamtion about free med programs for people who can't afford certain meds. There used to be a free Rocephin program but isn't right now but there are free other programs-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Ellen,
Welcome to lymenet.
If I had very little money, I would start with my diet.
"Let your food be your medicine and your medicine be your food" Hypocrates
To simplify how to eat, follow these rules.
1-Nothing processed. 2-No sugar (stevia is a good substitute) 3-Eat raw as much as you can stand 4-Make sure the majority of your diet is fruits and vegetables 5-Don't eat the same food over and over. You will develop a food allergy for sure.
Eat organic as much as possible. Our major grocery chain has begun offering a lot of organic foods and it has brought down the cost of organics in our town. That is making it much easier for me.
If you have to buy conventional, no problem. Still better than junk food. Just wash or peel anything not organic. (wash organic too )
Some foods not necessary to buy organic are bananas, pineapple, lemons, limes, etc because of their thick skin which we do not eat.
By eating well, you give your immune system its best shot at taking back control of your body. Even if it doesn't totally heal you, you will be stronger when you do reach an LLMD and will heal faster.
Good luck! Keep us posted!
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I absolutely second what Luvs said- my diet I don't really have one because it doesn't seem to matter for me- BUT I facilitate a support group where AT LEAST 25% of the people NEED to follow strict "Lyme type" diets (they vary greatly between those people!!! the dietary things that work best I mean) to stay doing well. It can make a HUGE difference for a subgroup of people and you don't know if you are one until you try*)!!!!!!!!!!!!
And what GreatC and Cavey said- we had a local woman self-treat- heck- we had two local women self-treat actually- one with animal abx from the feed store- she did great and had a diagnosis of Reflex Sym Dystrophy a muscualr dystrophy- from Lyme- and the other self-treated (I always forget about her) with Doxy from INDIA a friend send her and also did great!!!
MANY people self-treat with herbs and Rife and all sorts of things though... heat boxes- But a LLMD is preferable because self-treating can be dangerous- with all those things!!!!! But of the 2 people I know who have done it, both had good outcomes. It is My Plan In Case I Ever Lose My LLMD. The animal feed store woman just told them she had a goat her exact weight. (I actually DO have a goat but I think he weighs MORE than I do*)!!!)
HOWEVER, you just wrote a post entitled, "SO confused by all the information!" so I don't think you are a good candidate for self-treating- the VERY medically savvy types seem to have done best with that, the people I know. If you are confused you definitely need a DOCTOR!*)*!)
ANYWAY, there are Lyme diet ideas on here and also there's an old cookbook called The Arthritics Cookbook around as well as web sites galore on arthritis diets!*)!*)! Etc diets!!! Blood type dieting is a big one in our local group, a few people seem to have all read the same book on that...
ANYWAY, THEN I personally would urge you to find an LLMD who takes MEdicaid!!!! My doc does out here and I bet if you go to your local support group there WILL BE someone local who does, too!
My co-pay for my Lyme doc is $10!!! I hope you find one near you who is nice & cheap, too*)!
My 3 cents, Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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