After 8 years of antibiotics and every kind of alternative treatment imaginable, and having spent over 150K on it, including a few of best LLMDs in country, I am running very low on money.
I really like my LLMD, hes one of the cream of the crop. He wanted me to move closer, he has some new ideas, but Id have to be closer to office for 6 months. I was going to just do it and go bankrupt but rents are so high now, its not possible. Plus I have no one, and I mean no one, who could help me move unless I pay them. I'm to sick now to do it myself, I cant drive...etc
I am also getting worse, I cant stop taking abx and antimalarials or I crash. I am not completely homebound, but I do pay someone to help me twice a week. Aside from her, I have only had 3 visitors in the last 9 months.
In last two years, both my parents died, my brother has made it clear he would not take me in.
I have had to move a few times to keep rent low. And even before I was sick I lived all over the country. I don't even have friends anymore. The local lyme group sort of fell apart. And the two people in that group that were helping me, just quit talking to me. I know it was because I am needy, and they had a lot going on. Another case, they were so sure that if I did XYZ alternative stuff, Id get better. But I didn't. But what hurts me is that they haven't talked to me at all in one year and are clearly avoiding any contact with me.
I currently live in a rural county with absolutely NO medical services, which only increases my isolation. I keep getting passed from one mental health care person to another. They leave the only clinic, or tell me to find someone who takes medicare (no one is)
So the best thing for me to do is live in an area where near good LLMD and good medical services in general, that has a low cost of living. Also be nice to live near some civilization.
Its a tall order , I know. But if anyone had any ideas, Id love to hear them.
Posted by lpkayak (Member # 5230) on :
Many with lyme are not getting better until they treat mold. They dont even.know they have mold toxins in them. When i found out it was myproblem the mold exposure was 15 yrs ago. But depending on your genes the lyme toxins and mold toxins can prevent you from getting better. There are certified mold docs who are llmds. Pm me for more info. There is new science in last 3 years. betterhealthguy.com/topics/mold Moldymovie.com Survivingmold.com
[ 08-30-2015, 10:40 PM: Message edited by: lpkayak ]
Posted by Robin123 (Member # 9197) on :
Or join a state group in the state where you'd like to see a particular LLMD and see what people have to say.
Posted by Amanda (Member # 14107) on :
Thanks Kayak,
actually, I spent around 3 years seeing people who were mold knowledgable/ Dr. S trained. Dr. S had a phone in with my LLMD once, and even Dr. S said he wasn't really sure. I have the lyme detox genes and a multisuspectable, but not a mold gene. Said only way to really know was to live mold free for a few months. Spent a fortune in mold testing trying to find apartments, , and had every single spoon, barette you name it 401 cleaned before moving into a brand new building, purchased brand new things. That was 2 years ago. Also did marcons and all the other testing.
Sadly, I spent 3 years, countless hours and 30K, and actually, have gotten much worse.
Sorry if this comes across as shooting you down. Thank you for taking the time to respond to my plea, I do appreciate it.
Just for anyone elses sake, I have been on this board since 2007, and have seen 4 excellent LLMDs, so I have explored most of the known stuff like coinfections, parasites, diet.
I guess I was hoping someone would have some ideas on affordable, LLMD within 3 hours range.
Posted by Amanda (Member # 14107) on :
Thanks Robin
I have contacted a few states lyme boards, but naturally, everyone is so cautious about giving people they do not know the names and locations of there LLMDs.
Posted by Clint31 (Member # 16420) on :
St. John's wort all natural supplement and lithium all natural have helped me. I was very depressed and in a dark place
Posted by still winning (Member # 44439) on :
Amanda,
Can you give a hint in what part of the county you live? It might help in offering suggestions.
For now, just know we are all behind you and care about you. Each of us can relate to how lyme has greatly effected each of us, from losing careers, to social networks, and of course, to losing our health.
I don't want to give that lousy tick any credit other than for bringing us together, at least emotionally.
For now keep smiling or laughing through the tears.
Still Winning
Posted by lpkayak (Member # 5230) on :
Amanda...dont worry about me. I went a long time just not feeling dr s was answer...and no money to get there...but the new stuff he came out with the last 3 yrs made me think it was time. I have mold and multi gene and other sx that se er m.more mold than lyme so im giving it a try. Mold avoidance is getting really hard and there seem to be at least two extra bad toxins
Im going to pm you...i dont know where you live but do know a lot of llmds
Take care. Good luck. Sorry you are going thru this
Posted by Amanda (Member # 14107) on :
Still winning
I am out west, mid to late 40s, never married or had children (
Would love to move back to east cost Florida.
I did get a name of a LLMD there. But I am very cautious because twice I moved to areas with LLMDs, but once I got into the office, they were not at all that knowledgable. Or they tried to stop me taking abx, which was a disaster.
If I had stayed put, I'd have been much closer to urban area and my current LLMD. Now that rents have skyrocked, I cant go back.
For first 8 years, I was so strong. I kept my mind busy (before sick was scientist) But now I am so alone, all the time. Relentless, purposeless suffering, and now I have developed more symptoms. Everyday I live in trepidation because I never know what I am going to wake up with.
And it doesn't make sense. Even my LLMD is at their wits end. They caught the diseases about 18 months after I got it, and started treatment for them all,
I am beginning to feel it would be an errand of mercy just to end it all. I am tired of watching myself suffer with no end in sight. Its not like I would be hurting anyone if I died.
Posted by Lymetoo (Member # 743) on :
Amanda .. You would be hurting plenty of people, especially yourself.
Please see this site if you are contemplating suicide.
Are you in crisis? Please call 1-800-273-TALK Are you feeling desperate, alone or hopeless? Call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress.
Your call will be routed to the nearest crisis center to you.
Posted by Amanda (Member # 14107) on :
I want to thank you for responding to my plea, both here and personally.
Lymetoo - I notice you in particular, keep your eyes out for those of us drowining in despair,
Before I say this, I think its good you have the suicide link and numbers, good you made it a permanent post, and good you keep reminding us.
I would just add that if you live in a rural area, and the mainstream docs in your area really despise lyme patients, make sure you call the NAtional number,
Posted by tulips (Member # 44773) on :
Also, be sure that you are treating for Biofilms. The organisms establish Mucous bubbles in the intestinal tract in which they reproduce. I've started using Stevia in my morning coffee to eliminate biofilm.
Posted by TX Lyme Mom (Member # 3162) on :
Amanda, Whether you have the celiac gene or not, many Lyme patients find that they do much better to follow a strict gluten free diet.
The symptoms of neuro-Lyme and the symptoms of what I call "neuro-celiac" overlap so much that it's almost impossible to say where one disease leaves off and the next condition starts. Gluten can cause deep, black depression which does not lift until and unless gluten is totally eliminated from the diet, and even then it can take quite a while to notice any significant differences.
If you decide to try a gluten free diet, be sure that you learn everything there is to know about the subtleties of "cross contamination" with gluten and about "hidden gluten." Do a few Google searches to be sure that you are prepared to eliminate absolutely every trace of gluten in your diet. There's an important reason for doing so. Here's why....
.....After starting a gluten free diet, gluten sensitive patients will become infinitely more sensitive to gluten than they were before starting the diet. There's an immunological explanation for this which I won't get into. Just take my word for it. This increased sensitivity will last for at least a couple of years or longer. And if you do have actual celiac, then the sensitivity will never go away. Period. the only remedy is to stay on a strict GF diet for the rest of your life.
It is no exaggeration to say that gluten sensitivity can mimic neuro-Lyme so closely as to be almost identical in many aspects, including also cardiac symptoms and arthritic symptoms. The mold genes and Lyme genes and celiac genes are all very similar.
Many/Most of the leading ILADS Lyme specialists are now recommending gluten free diets for all of their Lyme patients because they have observed that Lyme patients who opt for the GF dietary lifestyle tend to do much better than other Lyme patients who do no make any dietary changes.
You owe it to yourself to give a strict gluten free diet a trial for at least six weeks -- or even longer. This might be the most economical and cost-effective way to make dramatic improvements within a relatively brief period of time.
[ 09-02-2015, 10:13 PM: Message edited by: TX Lyme Mom ]
Posted by Lymetoo (Member # 743) on :
Amanda .. I do hope today has been a better day for you.
![[Frown]](frown.gif)
( ![[group hug]](graemlins/grouphug.gif)