This is my 5th year of treatment. I have gone into remission once which I am very grateful for. But I am seeing the side of lyme I knew was always there,but always knew we would deal with when we got there. Well I am here. Lyme is so envoled that it takes more than antibiotics to climb out of the hole this disease has put us in. And I am at the point as to there I can get the antibiotics and that is it. I can't afford the testing for all of the damage it has done to my body over the years.And I surely can't afford all of over the counter supplements that in all likelyhood I need. I am starting to think that this is the end of the road,and I can accept that. I just wish the medical world could see what all of the politcs and games have done to us. John
posted
My heart goes out to you because Im in the same boat.Not only is this disease very hard on us but we have to fight for our treatment every step of the way,it truly is CRIMINAL.Two bottles of acidophilus $40.A month of mepron and zith $1700,00.Because I cant work and my income is low here in Mass. I get Masshealth,health insurance for $40,maybe your state has some plan to help you.Not that it help you but your not alone.Joe
Posts: 225 | From mass. | Registered: Mar 2004
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
I am meeting with someone with the FDHS next week. She is a compassionate friendly ex-neighbor of mine. Can I please use your quote?? I think it sums it up quite well.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Buggy,
AS I type your name RAID comes to mine. But, on the serious side.....regarding your question what do you do when you can't afford it anymore?
Wait. The way I deal with it is to wait until I can afford it. It does get frustrating, but I try not to focus on it...at least for not too long.
I try to focus on the positive in my life that I have to be thankful for. It out weighs the negative every time.
I am a business affiliate with a supplement company and am hoping that I will be able to eventually afford the supplements I need each month. So far, I haven't really been able to put much time into the company due to health being so low functioning.
But, I still haven't loss hope.
I keep hoping that I will be able to find a way to supplement my income so I can try some of the other things the LLMD has suggested I do also.
So, I guess what I am saying is to not throw the towel in yet.
It sounds like you have really overcome a lot of obstacles so far.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
buggy, please keep your head up...i know it is frustrating..i too am broke..as alot of us here..i have no insurance or money for testing either..is there anyway your doctor will give abx sample..just a thought..then it would free up some money for vitamins, etc..i buy my abx from my doctor when he has no samples, it is like 7 a month which is better then 20-40..then i use rest for probiotics or mg...thats about all i do...GOOD LUCK and try not to get discourgaged.
amy
Posts: 362 | From west chester, pa | Registered: Apr 2004
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Thanks for the replies. I get alittle poor poor pitiful me sometimes,and yesterday was one of those days. Ya know things could be alot worse,and I sometimes forget that. Like I could be in a country where there was no meds to treat this at all. Or I could be dealing with a duck for a Doc. Granted I have had this for a long time( since 1988 we think)and it could very well be too late. Well if that is where I am so be it. That is way I just want to curl up in a ball when I hear of some one who if they would have been treated early,they could of avoided all of this. Talk to the people you meet tell them not too take no for a answer,take their health in their own hands. How ever you do need to be honest with yourself. It all comes down to the person who is sick,weather or not they will have some good come from their life. Life here on earth is but a breath and it is over. Thanks for making the best of it,with your posts. as always be as well as you can be John
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I always feel so terrible when I hear what this disease has done to people's lives! It's just horrible!! In my personal experiece, I would NOT take what they dished out. No matter what they diagnosed me with and treated me for, I kept getting worse. The last straw with my old (duck) doctor was when he said he thought I was bipolar. THAT was when my mind said "ENOUGH"!! I took everything up until then... mono, ADD, IBS, Scarlet fever and yes... even menopause at 33, but no way was I letting this man sit there and tell me at 33 I sprouted a bipolar issue. I took my health in my own hands and went from doctor to doctor to doctor until I found one that sat there and READ my medical history. Without me saying a word, he said "I believe you have Lyme disease". I suspected as such for some time now, but was relieved a doctor was actually putting me on treatment for it! I'm embarrased to say that I cried. I may feel like crap now, but I'm hoping that I'm on the right path.
Posts: 62 | From Middletown, Rhode Island | Registered: Feb 2004
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Buggy, I didn't post to this topic when it first appeared because I wasn't sure what to say, but just now a new topic has been posted about Homeopathy, and it reminded me about it. Homeopathic remedies are quite inexpensive, relatively speaking, and they are often quite effective for symptom control. Some believe that if homeopathy is used properly that it can effect a permanent cure for all manner of incurable conditions.
Whether any homeopathic remedy is capable of "curing" LD or not, I'd be hesitant to hazard a guess. However, homeopathy is very, very affordable -- until something else better comes along, which proves itself to be "the ultimate answer" and "standard treatment protocol" for late-stage, chronic, persistent neuro-LD.
First, here's the link to a webpage about Ledum, which is the recommended homeopathic remedy specific for LD.
Next, here is the link to a new book review about homeopathy, which was just posted today as a new topic and which reminded me about suggesting the use of homeopathic Ledum to you.
The main point is, never ever give up. Hang on the best way you can, using whatever means are within your budget to cope with this, and have faith that sooner or later the "right protocol" or "ultimate cure", one which will be proven to be both safe and cost-effective, will come along -- so that no one ever has to ask again this same awful question that you have asked.
Right now, there are several of us who are enthusiastic about looking into the Marshall Protocol, using Benicar plus minocycline, at the sarcinfo-dot-com website. If it proves itself to be both safe and cost-effective, then it might represent the new wave of the future and the ultimate answer we are all seeking. However, I'm not recommending it to you right now because it's still unproven.
That's why I wouldn't want to see you wasting your limited monetary resources in order to be one of the first human guinea pigs to rush out and try it. I'm only using it as an example of how there might be something else new and better on the horizon, something which we don't even yet know about at all today, but which will become the new standard, accepted treatment protocol of the future.
In the meantime, homeopathy is just about the cheapest form of treatment (that I'm aware of) which helps to manage symptoms and which might even help you to achieve a comfortable state of remission again. So, click on that first link (above) and see what you think about Ledum, because it's dirt cheap -- relatively speaking, that is --to other popular alternative therapies out there.
BTW, Ledum is available in health food stores at the lower, safer potencies. Usually, though, the medium potencies are more effective than the lowest ones are for treating LD. The highest homeopathic potencies are never available OTC in health food stores, but can only be obtained through a licensed homeopathic practitioner.
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John, Pfizer has a plan that will pay for all your medicine, go to there website, www.pzfizer.com.On the tests etc., Quest Labs has an indigent program, call them.I know how costly it is, we dont have any insurance, but when I consider the alternative, its not a hard choice.
Posts: 46 | From Michigan | Registered: Mar 2004
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Thanks again for the posts and good ideas. I will look in to them all. I have another ? for you all. If I remember right I think Labrat had a problem with hole in his toe bones. I think it was caused by the lyme eating them away. I might have something like it,only in the facial bones. About two months ago I had a mri that should thickening of the maxillary sinus. When I went to my LLMD He told me I should check into that. Well Thursday I had a ct scan,and my ent is thinking I could have deteriation of the facial bones in frount of the maxilarry sinus (cheek area). Has anyone else ran into this ? I am just wondering. What ever happens ,happens. You all take care and have a great day. John (buggy)( appleseed)
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Buggy, The only thing I've run across pertaining to bone resorption has been on the SarcInfo website at. I don't understand the connection well enough myself yet to be able to do more than simply refer you to that website.
Anything, the whole concept has to do with an imbalanced ratio of Vit-D metabolites and the effect of this imbalance on calcium metabolism. OK, here's the link so that you can check this idea out for yourself.
Note that they do have a good search engine at that website, so you can enter the terms "bone resorption" and "osteoporosis" into the query box to find exactly what you are looking for there very easily.
BTW, I'm looking up research articles on PubMed right now to try to figure out if chronic, persistent, late-stage LD could perhaps, maybe represent an "atypical" presentation of sarcoidosis..(?) If so, then the link to the SarcInfo website (above) might not be too far-fetched for us Lymies to begin studying, afterall.
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