kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have that pain in the eye, sweats, head stuff, next I think I am going to throw up stuff which I have not had in a long time.
Don't know if it is because I started back on meals on wheels.
One meal is delivered a day but it has sugar in it...sugar in the carrot marshmellow salad ,sugar in the canned veggies, sugar in the egg salad yesterda...I had pretty much removed sugar from my food intake...
until I started back on meals on wheels.
Or it could be the the candida stuff a doc suggested I take. I took the full dose yesterday for the first time.
Die off?
And I am no longer on abx.
Back to just having enough funds for one or two weks out of th emonth then waiting until the first of the month to get gas in the car, food, etc.
Havent' been well enough to apply for the $50 in food stamps a month yet for some time.
Not sure what to do. Too sick to figure out how to bring in my own income and get off of SSI
I will slow donw on the candida pills. I am supose to take 4 a day. I will go back to 2 a day.
Thinking i need to stop meals on wheels. Too many things I can't eat and if I am hungry and it is there I eat it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi kam,
I am praying for you!
Is it an option to get sugar-free meals from Meals on Wheels...like they would provide for a diabetic?
Praying that you will be lead to the right decisions and your health will improve, and that all your needs will be met.
You could be feeling the effects of both the sugary meals and the candida med.
The med would have more candida to kill off due to the sugary meals.
I'm not sure of your age...is there an agency who can assist you with applying for food stamps and evaluating your situation to see if there is any other help available for you?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
kam, so sorry for all that you're going through.
Dekrator has a good idea to contact meals on wheels regarding sugar free option meals...I encourage you to rally your strength and give them a call to find out.
What about churches in your area that have food pantrys?
About how you're feeling...this could be totally off the wall...However, not to long ago I felt like that, come to find out many at my work were experiencing the same thing. It ended up being a touch of the flu and not even related to LD. Just a thought.
I pray you're feeling a lot better soon.
God give you wisdom and strength what to do. You're in my prayers.
Posts: 2188 | From Oklahoma | Registered: May 2008
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
No diabetic meals on wheels here.
I left a note on my door to cancel when they deliver today.
Thanks for the prayers. It looks like this time it is not going to last as long as it usually does.
I hope. I all ready tossed my cookies and did the other thing that goes with this..either I am sure you want to hear about.
But, pressure in head, eye has let up for now.
I am going to a local church's food pantry when able.
But, need to take many of the things out of the bag they provide and give it back to them....
so much of it has sugar in it.
Or it is white rice, pasta..can't do that either.
The canned corn, etc that I did bring home all has sugar in it too...second ingredient.
Who would have thunk it.
I really do think this is due to adding sugar back into my diet via the meals on wheels and food pantry so need to go to plan B
So glad it was not a 3 day thing this time...I hope.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Hope it is the sugar too, but my first thought was babesia.
I guess you will know soon enough.
Sorry things are so rough for you. Praying for you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks Bea. I use to have this stuff a lot and then it went away.
Either way, not having sugar is better all around so that is one step in the right direction.
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Kam, praying for you,sorry you are having a difficult time right now. hug to you.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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posted
Kam... I know how you feel - been there lately...
Anything we can do? Lots of prayers...
Posts: 238 | From Jackson, TN | Registered: Mar 2010
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Prayers you feel better soon and things work out money wise, health wise.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Good morning Kam,
You were on my mind this morning and thought I would check in on you. Praying you are better today.
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks MDW....It is so good to connect with others via the internet.
Waiting for one of those mornings when I wake up and am able to get out and feel a bit normal for a short time.
Thanks for thinking of me.
TuTu...yes. I do better GF too.
Stopped meals on wheels yesterday.
Can't recall what I was taking for candida. Did not take any yesterday.
Just know the one pill was a slow release garlic pill and it was strong.
Waiting until I am doing better before I start back on the 4 pills a day stuff.
One pill was garlic, one probiotic, one mag and can't recall what the other was. I was told to start light as it most likely would be rough on me.
Difficult to comprehend how it could be rough on me with die off with those 4 pills.
Trying not to be scared. Hoping to be well enough to make it to the food bank today and hoping there is something there I can eat.
I hate this but others have it much worse. Need to refocus.
Thankful that head stuff and eye stuff has let up. don't think straight when that happens.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Kam >>>>>>,
Glad you are feeling a bit better, it is hard to find GF products for we Diabetic Lyme folk.
I had wondered about Babs too,altho' those symptoms are also very much like the Statin Allergy/poisoning I had last Friday [still feeling a bit rough].
It is difficult not to be afraid, I am fighting fears as well...we'll keep fighting the fear,and the Lyme and Co's!
Hugs and prayers <<<<< Kam >>>>>!
Jus' The Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Praying this resolves quickly and your back to vrooming in your car enjoying the forrest trails.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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chiquita incognita
Unregistered
posted
Hi KAM
I posted a thread here in the General Support section titled A Book With Resources for Lyme Patients.
There, the book I am referencing (got it from the library) lists grant sources for medical treatment, lyme specifically. Go check it out.
posted
Copying/pasting this from another thread I posted. Stick with me and keep reading, it gets better and there is news about where to apply for medical funding, lyme-specific. Best wishes, CI
Here is some new information I just came across in a book which I just got from the library. Toot toot, hooray for the librarians! They are on our side. Yippee!!
"Coping with Lyme Disease, A Practical Guide to Dealing with Diagnosis and Treatment" by Denise Lang, with Kenneth Liegner, MD An Owl Book, Heny Holt and Company
What do we do if we are (Criminally, if you ask me) turned down for insurance payment?
Bad news first, then good news thereafter.
on page 205: "Depite international and domestic research to the contrary, despite the CDC's emphatic statements that chronic Lyme disease is a serious condition and should be treated appropriately, and that CDC criteria for tracking lyme disease should not be used for any other purpose, most insurance companies have glommed onto CDC restrictive criteria as well asa set of medical practice guidelines concerning Lyme disease issued by the Infectious Diseases Society of America (IDSA).These guidelines assert that there is "no significant evidence that chronic lyme disease exists" and taht there is "no role for treatment with antibiotics beyond one or at most two months for any case of LYme disease".
Do we all fit into their box? Methinks not. Time to sue these unconscienable harm-doers? Methinks yes.
Here is a note of hope: on page 213 of the book above:
"Equitable treatment from insurance companies is also the province of Families USA, located in Washington, DC. Formerly the Villers FOundation, it was founded in 1981 by Philippe Villers and his wife, Kate, to reform the health care system in the United States so that it assures universal access to care. Villers, who fled to escape Nazi persecution, grew up to become the creator of Computervision, a successful computer company. The foundation is his contribution to his adopted country. It provides grants and advocacy to those seeking redress in the health care arena. Under its Health Assistance Partnership, Families USA assistance to consumers ranges from education and mediating solutions to investigating complaints and actually representing consumers in hearings".
Wisely, the book also suggests appealing to the media for help. Publicity can shame these wrongdoers down, forcing them to pay. If not, other people may step forward to help.
I knew someone who did that when one person needed an organ transplant and couldn't afford it. They had an article written up in the biggest local newspaper about organ transplants, the long waits in line, etc. followed by a one-sentence statement that "as far as the cost, we frankly don't know what we are going to do". They got about $5,000 in donations to help.
More resources listed in the book. MANY of them! HEre are a few:
Medscape AE recent research updated daily, posted on Pubmed, could be helpful as support in writing claims Medscape AE www.medscape.com
NeedyMeds.com has info about how to get coverage in absence of insurance. Don't call with problems, see website www.needymeds.com
The book also mentions appealing to your State for help.
You could contact a case worker in your State Representative or Senator's office and ask them to help you.
YOu can also call the State's Insurance COmmission to get instructions for appealing on the State level.
Lots more resources and info in this book! THanks to my local library, toot toot trumpets blast woo hoo! It's good to know that there are people who care. We are not fighting this alone. Perhaps the libraries have more resources than any mentioned above. And the book has more resources, check it out.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yo Kam...
Sorry you were feeling so ruffffffff. Darn it all!
Can you please email me? Got an idea.
CI- For some reason this link isn't working for me. Is it my computer or ?? Thanks for letting me know.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
TC ..is your idea to run away?? packing my bags now.
The main reason to post was the head stuff and poke in the eye and what comes afterwards.
Brain doesn't think straight when that happens and death seems to come into my head.
But, not doing well enough to do anything about it.
Still scares me. So appreciate the prayers.
STill have the other issues to deal with thoough too.
not ablet o read your thread CI as that part of the brain is hit and miss ...mostly miss.
Your pm box is full.
I will try and read your pm later.
now to see if i have what it takes to send a msg to TC
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Kam - I used to work for a non-profit that provided a service for disabled people. For them, this service was limited to individuals with developmental disabilities... and they are in Massachusetts.
PM me where you live and I will search the Internet for you. Maybe someone in your area has a non-profit that will help you.
A representative would come by the house and take you shopping, take you to the food pantry and cook meals for you... put them in the freezer (packed individually) so they were like TV Dinners.
Sounds like you could use this kind of help.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Mom Lyme...I do get 4 hours a month paid by the county to help with household chores, etc.
They wish they could give me more hours but funds are low.
On the other hand, the caregiver said she goes to some of the other homes and just sits there...they have more hours than they need.
I think it has something to do with who is paying the bill.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
A non profit group like that would be very helpful here. I live in a small town.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I used to have one woman who only got one hour a week who needed much more... I used to ask other clients if they minded if ______ came to run errands with us. That way she could get the services she needed even though we (as a non-profit) couldn't get the funding for her. It was against the 'rules' but I ran it by my boss and he said as long as I didn't mind 'the extra work' and the clients approved it, it was ok.
Usually the clients enjoyed the social aspect of going shopping with another friend so they readily agreed!
I just found a thread on non-profits and bumped it to the top. Perhaps someone in the southwest near you has already started something... or will want to start a non profit?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hope you're doing better, Kam!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Able to finally get the on line food stamp form filled out.
I think the next step is that they contact me.
I was in a fog while filling it out so just read the first 3 words and then checked yes or no.
but, at least I got the job done I think.
Phase one
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
I'll sure pray for you! I can tell you one thing...if I eat a lot of sugar the pain I have just gets about 3 times worse! I've heard that sugar in people with inflammation acts as shards of glass and I believe it! I also know the stress of being so strapped for money. I have no idea how I'm going to pay for the treatments I'm on plus all my other medical bills. All I can do is trust in God, but it's hard sometimes.
Posts: 21 | From Indiana | Registered: Mar 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
CI Went to the web site but vision is not workign well enough to read it or processing or both...maybe later.
Still trying to pull myself out of this down ward spiral even though the worst of it is over with as far as the inflamed brain stuff that thinks death is the only answer.
I know I am doing better than I was and I just need to wait this out until I am able to drive to at trail head and be on my feet for 5 or 10 min or have the senior van take me someplace so I can cruise in my power chair outdoors for 30 min.
I do find that when I am this low fucntioning that I start thinking it has been like this the past 10 years and that it will not get better.
But, then when health improves I have my fight back and things don't look so dark.
Thanks for the reminder.
Trying to change attitude this am.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
kam i pmed you-some phone numbers that might help
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kam, maybe you could take out some of your frustrations and give you power chair a real work out?
Challenge someone to race you? Getting prepared and mentally ready for a big race seems to give others a boost.
Kidding aside, this to shall pass. Take care!
Pam
PS- Tincup has all these race connections. I bet she could even find you some competition. Tinny is a race freak.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
CI...pulled page up again this am and noticed it is for medicare patients. I am on medicaid.
Kayak...thanks...keeping pm in inbox so when I am able I can call them and see what they may be able to help with
Map...took 2 excedrin yesterday evening and got in the car and drove on a 35 mph road with little to no traffic through 4 creek crossings.
Able to get out and walk 5 min on the 3rd creek crossing, rest and walk back.
That helped big time even though the brain was still weird.
But, back to "lyme nomal" now. the crisis is over.
It is that brain thing that comes along with the poke in the eye that scars me...something switches in the brain
Hadn't had it in a long time. Hoping I don't ever have it again.
I don't have the will to continue to fight the good fight when that hits.
Thought I would like to have company on yesterday's outing but knew my brain was not working well enough to have someone join me.
Also knew if my brain were working well enough and body that it would take to much out of me to have someone with me.
The neighbor upstairs came out on her patio again waving to me when she saw me get in the car.
Over a year or so ago..maybe two now..I was doing well enough to have her join me when I went out.
But, health has not come back to that level yet and it did task the body too much to have her with me.
Sweat lady. She doesn't understand why I can get in the car and drive and not take her with me.
I keep telling her my health is not at the level where I feel someone is safe to have them in the car with me.
Brain can't chew gum and drive at the same time so to speak.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Map...thankful I am able to get in the power chair and go a short distance or around the block now.
I recall a time when just getting across the street in the power chair would be too much and cause me to toss my cookies....and be so out of it
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