I've been lurking for a very long time now, and I thought it was time to join. I have been especially watching the Salt/C threads with great interest. I do not have health insurance. I was previously on i.v. Rocephin for 6 weeks but no real change. I have been on lots of orals as well. I have Lyme and Bartonella. I was on Levaquin and Rifampin but Levaquin tore my tendons up and Rifampin made it hard to care for myself and my 3 year old. I had to stop. Then I lost my medical insurance.
Salt/C seems like the only thing I can try. I was wondering if anyone can give me some starting directions on how to do this. If you could include the brands of Salt and C, that would be appreciated. I am sure that this has been discussed before, so just a short reply would be nice.
Also, is everyone here getting their blood work checked for kidney function and anything else they would need to look for/monitor?
I get a little nervous as some people say this is very risky and then some say it's fine because it's not table salt. I am a little confused but I am so sick, I don't think I care anymore.
I thought that I got bit last January, my lymph nodes swelled up in my groin and neck. They are still swollen on and off. I started getting neuropathy in my neck and face, and it has since started to spread. I have horrible rib pain as well. Fatigue, sore throats, sore heels at times (hurts to walk on them, they burn especially if I'm walking on tile), but more than anything the neuropathy and tight neck muscles/skin is the thing that is completely RUINING my life.
Does anyone here have any suggestions for neuropathy? I hoped the i.v. meds would knock it out but from what I read, 6 weeks is not enough.
Any help would be appreciated. I am a mom to a 3 year old and recently divorced, I can't imagine being able to work in this condition. I am very scared. Please help me.
Posted by treepatrol (Member # 4117) on :
You need to get a LLMD . Go to the Dr section and post for one.
Iam sorry i didnt see this before.((I do not have health insurance)) So sorry maybe someone will come along with a better Idea for you Iam tired today mind is kinda floaty.
[ 13. January 2009, 10:40 AM: Message edited by: treepatrol ]
Posted by seekhelp (Member # 15067) on :
The person just said they don't have insuarance. Posted by bejoy (Member # 11129) on :
I can help you walk through this without insurance. I had to do it without insurance and without doctors, but it still cost me quite a bit of money.
I've been mostly better for about a year, with a couple of lyme flairs from being under stress. It took me about a year to get there.
I think salt C is very good, but it doesn't cure lyme. It just gives several of the coinfections a run for their money so that your immune system can handle lyme better.
What resources do you have for money to live on, and money to spend on the disease?
You have to take this as seriously as cancer and attack from all sides to get better from it. But you can do it!
If I were you, I'd take a look at the information on the Deseret Biologicals series remedies - the Borrelia and Bartonella remedies are powerful. About $50. each
You have to find a professional - homeopath or chiropractor or somebody who will order them for you. Visit about $50.
Another thing that is inexpensive but works really well is bee venom ointment called Venex from beevenom.com You can look up posts on that too. $30.
I also suggest MSM powder to help clear out the toxins, and also B complex vitamins, Vitamin C, calcium, magnesium, fish oil, and siberian eleuthero. $70. total for two months?
I would also get Biotox Elim from PRL from a natural practitioner, or you might be able to get it on line. This will go after babesia and also help you detox. $12.?
This list would be a bare minimum, but it could do the trick.
Then you need to do sweats, like sitting in a hot bath at least every other day to help eliminate the toxins.
You also need to look at how much heavy metal like mercury you have in your system. That's another conversation entirely.
Having tried many different approaches, I am a big fan of the Lightworks Biophoton therapy. The Lightworks costs about $300.
Many different approaches work. The above worked best for me.
Look at all the information, then make a plan about the approach you are going to use, and stick to it.
Make a budget of how much your approach is going to cost, and beg or borrow the money if you have to.
You can start with salt C, but be careful. If you do it, start slowly, adding 1/2 tsp of salt a day to your protocol. If you get too sick from it, back off immediately.
Good luck.
Posted by treepatrol (Member # 4117) on :
i'd like to suggest you edit your subject line by clicking on PENCIL, 3rd icon to right of your name.
subject: new here; NO INSURANCE; Salt C questions, advise needed! thx
also, while you are in there, please break up your LONGEST paragraphs into shorter ones ok for us neuro lyme folks who can't read or comprehend LONG, solid block text. then we can HELP you with our experience ok!
click edit send when done!
FINANCIAL BURDENS...print/read off this wealth of info in my newbie package link below ok! that will help you too.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
DebAZ's 12.08 comparison of 05 to 08 new guidelines:
Differences in newest Guidelines compared to 2005 Guidelines
Page 25 26 and 27 Added section "Sorting out the co infections"
Page 28 New info given to get supplements from additional places
In all areas of Supplements there has been various changes and additions to each description and i advice people to re read the full supplement section as well the following additions to the whole supplement section:
Basic Daily Regimin NT Factor Added
Alternative Treatments CITICHOLINE Added
Immune Support Transfor factor Added
For Fatigue Took out "For Fatiuge" section
Other Optional Vitamin D Added
Page 31 "Lyme Disease Rehabilitaion" is rewitten and added to
He mentions Flexcreme (Flex Cream) by Pharmanex as great for body pain
. suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
sorry, link takes you to END vs. beginning, so just use UP ARROW and go to the TOP for detailed info! thanks!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
***************
please go to my newbie links, copy the entire thing, and then print this off....
financial burdens compiled by melanie reber pages 74 - 92; outstanding info there.
also in my table of contents, for FINANCIAL BURDENS, i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences. thoughts and prayers headed your way..
Betty's POSTING GUIDELINES
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
Posted by imsosick (Member # 18765) on :
I wanted to add that I did have an LLMD for a while. That's how I got the i.v. Rocephin. All in all, it wasn't a very good experience. I live in N. FL.
Also, as it is, I do not have ANY money to spend on this. I am fighting for alimony. I know people say, "You have to find the money somewhere, it's your health!", but I do not have a house to mortgage, can not take out any loans, and I can't sell my car. I have a 3 year old and I HAVE to have a car. As it was, before I lost my health insurance, but after my husband and I split up, I could not even afford my $30 co-pay to go to the doctor. I am living off a few hundred a month in child support.
This is a humbling and angering experience, as I have been a house wife and a great mom for 5 years, I feel like I contributed a lot to this household. We were a family making $80,000 a year....now he's rolling in the dough and I'm destitute. He has left me incredibly sick, without health insurance, and I never could have imagined my life would end up so horribly.
I am currently fighting to get him to pay my insurance and to pay me alimony.
So, that's why I asked about the Salt/C thing. It was my only hope. This isn't a situation where I just don't "want" to find the money...there isn't any to find. I've lurked for a long time now, and I always get the drift that people just don't get it when people say that are absolutely positively broke. I do not buy ANY extra things, don't drive anywhere I don't have to, buy off brand stuff. I've COMPLETELY downsized my life so that I can stay home with my toddler. You wouldn't even know that my "old life" existed.
Also, I do have a bunch of refills on antibiotics. I just think I should get my blood work done if I'm on them. After a year, they null and void your refills though. I just don't feel comfortable gambling with what is rest of my health (there's not much, trust me) by taking all of those antibiotics unsupervised.
I'm in so much pain, so sick, just like the rest of you. I HAVE to get better - I HAVE to work to support my son and myself. I can't imagine working right now, it actually literally makes me cry. My mind is blown with pain.
I do not take any pain pills as I am afraid my ex-husband will try and throw it in my face to get custody of our child. He thinks that I could lose custody if I admit how sick I am or take prescription pain meds. Is that true?
Posted by Judy G. (Member # 18498) on :
You have a lot going on! I know what it is like to go through a split up with kids and have no money.
There was a time I had $10 to feed me and my two kids for a week. That was a long time ago and my life is much better now (although I have Lyme!)
My lifesavers at that point were my therapist and my attorney. I know you can't afford a therapist, although there may be walk-in clinic or community center that would see you for free.
But I hope you can find an good attorney to take you on -- mine collected her fee from my husband by court order after the divorce.
As for your Lyme troubles, I don't know. I know I shell out a lot for supplements and other expenses and I have insurance now.It can be expensive.
You might qualify for Medicaid in your state. Go to the local social services or human services government office to apply.
That's all I can think of. And good luck. Don't give up.
Posted by lymednva (Member # 9098) on :
I can certainly relate to your situation as I went through a similar one 13 years ago.
I was still able to work, but I had the mortgage to pay, along with all other expenses, including orthodontist. He was just complaining he was broke! Welcome to the real world!
I hope you have a good attorney working with you on the alimony/ I don't know the laws in FL, but here he would have to pay you. Good luck!
Posted by jam338 (Member # 14002) on :
Imsosick, sorry I don't know enough about SaltC to answer, hopefully others can. Just wanted to say I am sending prayers your way.
Since you have been lurking/reading you likely know there have been lots of posts on SaltC, especially lately.
Among them are constant warnings about dangers so please read up and be very careful! I have read one needs to be careful about electrolytes, but have yet to see a post saying how one monitors electrolytes!
Maybe there is more in archive posts? You might try the "search" feature.
Posted by lpkayak (Member # 5230) on :
salt c is not the answer to this.
your best bet is to hook up with bejoy.
there are a number of protocols you can do without a doc.
salt c is not a lyme protocol. it can help but not cure. and it has made some people very sick-so without a doc monitoring you it doesn't make sense.
bejoy hit on a a lot of info you need and is offering to help. i'm too sick to do that now-but it's hard to keep my mouth shut when i see a newbie going in a dangerous direction
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.