First: I totally believe in LLMDs, and respect everyone who pursues antibiotic therapy. I have had much of it myself.
I'm just reaching the point of financial exhaustion. At 47 and in a good job that I'm hanging on to by my fingernails, I can only just afford (and sometimes don't) to be paying back each month what I've already borrowed.
I've been pondering next course of treatment my LLMD has suggested, which may have promise but isn't going to be covered by insurance at all. I could borrow more money, but if this protocol doesn't work, then I'm really in serious debt and probably on disability by then.
And then I found out today that my LLMD is going to drop my insurance anyway.
I'm thinking of going 'out on my own.' In my more lucid periods, I can be a decent researcher. I'll still need to see my primary care for pain and other maintenance meds.
But if I can make myself eat as cleanly as possible, perhaps even vegan or macrobiotic; figure out some way to start moving in spite of teh pain, take supplements, try to reduce stress....do I have any hope?
I know many folks here have improved with 'traditonal' treatment, but I haven't. So maybe this is best for me, regardless of money considerations.
I really feel like I need validation and guidance, like a book that says if you do this, you'll get better.
Any thoughts or advice will be greatly appreciated. I also want to know any negatives of not being on abx (which I alreay haven't been since getting c. diff last spring)
Posted by Peacesoul (Member # 13709) on :
I say 101% yes! I've spoke to lyme sufferers who were fully recovered on herbs alone.
My ND told me both her lyme patients never did abx and are ok.
I opted to take abx for 3 months to lower my load, then I will do strickly herbs and "good" living.
Now this will not work for everyone and it's trial and error, but you will never know until you try.
Posted by david1097 (Member # 3662) on :
How long have you been treated? what happens when you stop abx?
If youare still able to work then you are problmay still more or less functional. you might consier shifting to a subsitance regime... ie a drug regime aimed at keeping any residual infection at bay. This is an appraoch used for soem other nasty infections, one of which is leporosy. Basically a long term, low or on=off dose of one fo the drugs that seemed to work. If something with a long half life worked ok (like zithomax) that would be very good since it lasts for days in your system.
Another option is if you are overweight, lose the weight as the drug doses can be reduced, sometimes by a lot. That translaters into cost savings.
be carefukl about the herbs. They are not cheap either and have zero chance of insurance coverage.
Have you tried to get your drugs from someplace like canada? It is much cheaper.
You can also ask your LLMD to try some of the less expensive drugs. They are out there, usually the older, now generic drugs. They do work sometimes.
Posted by bejoy (Member # 11129) on :
In my experience you can get better without tons of antibiotics, but it's alot harder, and not cheap.
If not doing antibiotics (and even if you are), look into the following:
Buhner's herbs Deseret Biologicals homeopathics Lymph drainage liver cleanse weight lifting even if in pain heat therapy, such as hot tub at 106 candida cleanse heavy metal detox extra sleep therapy
If not hitting hard with antibiotics, you have to hit it hard with everything else you can.
Also, there are some alternative sources for antibiotics that cost less, if you absolutely cant do it the conventional way.
Posted by lucy96734 (Member # 8372) on :
I guess it depends on what you are going to do on your own.
Before knowing I had Lyme I was so sick and desperate I went to a naturopath and she had me do: ION blood test which told what supplements I needed stool test for bad guys and what natural things would kill them heavy metal test and detox elimination diet with very restricted organic only food reiki (sp) massage sauna physical therapy etc
I did a million things. I ate no sugar, low carb, restricted so much that I didn't eat out of the house ever, and I made very small improvement.
The improvement I made was really with the heavy metal detox.
We didn't know that I had Lyme at the time but what I did only helped a tiny bit for some things.
It may be very different if you add the herbs that can kill Lyme and co-infections if you have them.
It can also be different for you because it sounds like you have been treated already. I was starting from nearly 5 years of being sick with no idea of what was going on.
I was glad that I went to her, when I didn't make leaps and bounds she tested me for Lyme- she was thinking :-) And sent me to my LLMD.
I think doing all of the above along with the abx and now the Cowden protocol has all worked together to give me my life back.
I rambled and didn't really give you any useful advice.
It depends :-)
Posted by roro (Member # 13383) on :
i had lyme first in 1995. i think I did get better by dieting (the zone, body for life, lowcarb, weight watchers) exercised, hiked, lifeted weights
i was very functional
then I had to do several rounds of abx for lymph node infections and all of a sudden i found myself in the hospital with carditis, meningitis.
my health deteriorated after that. I dont know if it was lying dormant and then the abx made me herx or I got reinfected.
so yes, i think it is possible, but be careful
Posted by HamDune (Member # 14139) on :
A couple people mentioned weight lifting as beneficial since many of us seem to have difficulty with cardiovascular and aerobic exercise. Does anyone have a weight lifting regimen that is known to be helpful for Lyme sufferers? A link would be great, but any information is appreciated.
Posted by gwenb (Member # 7217) on :
I think it is possible.
I have had Lyme disease for over 18 years - I may even have had it as a child (arthritis in the knees as a kid).
I was officially diagnosed 2.5 years ago at a time when I was really damn ill.
I haven't taken abx and I have slowly climbed my way up the health ladder. I work full-time and exercise regularly.
Here are the things I did to get better.
1. Radical change in diet. No booze or coffee. Try to avoid sweets. Juice daily - leave pulp in. Low carb low glycemic diet. Tested for food allergies - avoid foods I am allergic to - which at the beginning was almost everything.
2. Vitamin D 3 - my silver bullet
3. Exercise - could only do it after D 3
4. Magnesium to bowel tolerance
5. Sleep when I need it
6. Energy tested herbal formula - very important for me
7. Essential fatty acids
8. Activated charcoal and lemon/olive oil/water concoction to control herxes
9. Grapefruit seed extract, oil of oregano and assorted anti-fungals and antibacterials
10. Digestive enzymes
11. Virgin coconut oil
12. Also Teasel root, artemesian and ashwaganda.
I researched incessantly and read pubmed constantly re: herbal remedies I was taking and what western medical literature had to say. Most of the herbal remedies I took were backed up by peer reviewed studies.
Altogether it has taken me 3 years to get "well" (I started modifying my lifestyle before I was diagnosed). By well I mean I function at about 80-90% daily.
Hope this helps.
Posted by luvs2ride (Member # 8090) on :
Did you do most of this on your own? If not, who helped you pull it all together?
Posted by Aniek (Member # 5374) on :
It seems to me you are not talking about herbs or any treatment at all, but just through diet and lifestyle change?
You may improve symptoms that are caused by toxic build up or food sensitivities. But you can't get rid of Lyme without doing something to kill the Lyme.
I have a feeling I know who your LLMD is. If I am right, talk to her about financial difficulties. I know she has worked with patients who have money difficulties.
If your debt is on credit cards, call the credit card companies and try to negotiate down your debt.
Posted by monkeyshines (Member # 6406) on :
thanks, all for your feedback.
david1097, I've been treated for five years now, both LLMD and naturopathic. I've had numerous oral abx, plaquenil, benicar, two rounds of IV rocephin, vitamin c and hydrogen peroxide IVs, cranial sacral therapy, many tests (lyme, coinfections, MRIs, CT scans, heavy metals, muscle testing, vast numbers of supplements, homeopathy, removal of all metal fillings, tonsillectomy, total avoidance of allergan foods (wheat, dairy, eggs, soy) for 4 years now, colonics, physical therapy, treatment for parasites. It's hard to remember what else.
The above is why I'm broke, as much of what I've done in the past two years hasn't been covered by insurance.
I'm not on any abx right now (since being hospitalized with c. diff during the second round of rocephin in 2007).
Basically, I've gotten progressively worse regardless of what I do. Other than being much sicker on IV rocephin and somewhat sicker on several of the oral abx, I've never seen any change other than the pain migrating to more and more parts of my body.
My continued relative high functioning (i.e., working) is dependent on opiate pain meds, being lucky to have a very long-term employer that's been both supportive and flexible, and accepting having very little 'life' outside of work. (My daily pattern is work, recover, work, recover, week after week, and has been for several years.)
I basically keep hanging in re: work in case I get better. I may be nearing the time, though, when either I or they need to make the choice for me to go on disability.
Buying Rx, in and of itself, isn't the issue for me right now. I have a good job and health and Rx insurance as well as medical flex saving fund.
It's the tens of thousands in debt I've gone into in the past several years and now having those bills come due that's the problem. I finally reached the point where my incoming is less than my outgoing.
What's tipped me over the edge now is my LLMD just proposed a protocol that would help me avoid more abx, but would cost an estimated $14-28K this year out of pocket. (Plus, I will have no more insurance coverage with my LLMD within a few months.)
I just don't think I can go that much more into debt without a guarantee that this will be the thing that works. And there are no guarantees with anything that has to do with lyme.
In my dream world, I'd go on disability, work on regaining more mobility so that I can get some excercise (beyond walk to car, walk from car to office, reverse, repeat), have time to focus on grocery shopping for cleaner eating, buying and taking supplements or herbs (all of which is exhausting when you're struggling to work and minimally keep the house clean). But I need a good plan and some sort of medical supervision to do that.
bejoy, lucy96734 and Gwen, you've given me some good points to research and consider, thanks.