Aa
Being broke must be a death sentance
I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
Lyme can cause blurry spots in vision that mimic astigmatism. I thought my astigmatism was getting worse, and I got new lenses. Now that I'm well into treatment, I need to get new lenses again, probably the same prescription I had before.
The downside of getting new lenses is that your vision can change fairly quickly with Lyme. The author of "Cure Known" said she didn't want the cost of frequent lens changes and so she accumulated a collection of reading glasses of various strengths and used whichever one helped the most at any given time. I've seen reading glasses at a Dollar store so you can get them really cheap, if they help. If you need new lenses for distance, especially for driving, then definitely get those. You want to be safe.
I also had light sensitivity and three different kinds of floaters, so keep an eye out for them, too. (He He. Pun intended.)
The downside of getting new lenses is that your vision can change fairly quickly with Lyme. The author of "Cure Known" said she didn't want the cost of frequent lens changes and so she accumulated a collection of reading glasses of various strengths and used whichever one helped the most at any given time. I've seen reading glasses at a Dollar store so you can get them really cheap, if they help. If you need new lenses for distance, especially for driving, then definitely get those. You want to be safe.
I also had light sensitivity and three different kinds of floaters, so keep an eye out for them, too. (He He. Pun intended.)
Yes dreamsnake, that's what I'm saying. It's hard for some people to truly understand. It really is a toss up between feeding my kids what they want and treatment but at the same time, I keep getting bombarded with the importance of healthy eating with this disease. Is it really that important? Because I can't afford it! Especially with treatment! I've already begun a herbal approach and I have to say, I don't know how long I can afford this route either. It gets expensive!! I am so tempted to order my own prescription medicine now that I know what to order, you have no idea. The medications I need are soooooo much cheaper but all this counterfeit talk has got me thinking. I've ordered many medications from this company and they all worked as expected. So IDK. If the medications don't have the appropriate levels and rather just enough to feel the effects, I'd have resistance to deal with. I have an appointment in Oct with an LLMD if I live that long. And luckily she accepts payments. Of course, I worry about my kids too! I hate having to put myself first but I seriously feel like I'm about to croak. They seem fine and healthy but there are a few signs in them as well. I really don't know how I would afford all three of us! They don't have a father in their life and I don't have a husband or a wife.
As far as I know LymeTap will help with some of the Lyme associated lab testing but nothing more. Any little bit helps though!
Thanks for the advice cave 76!
I just found out I have an astigmatism, could that be from Lyme? I've always had perfect eyesight until about 8 months ago and it's been declining ever since about the same time my health began its rapid decline.
As of now I'm taking Interface Plus; Allmax prepro but probably not for long as it's expensive; Nattokinase; MSM; Prescription Bactrim I've had and the amoxicillin I got from the dentist. I'm debating Lactoferrin, Berberine, and CoQ10. I'm aiming more towards biofilm busters at this point. Otherwise nothing else will take effect. This stuff is all over my hair and skin. I can see under magnification and it's thick! I can't imagine what my insides must be like. Hopefully I can get the dosage right. The more I take the quicker I'll have to buy more but I want to take enough to be effective without getting real sick either. I'll fit Cats claw in after I rid some of this biofilm stuff. I have other ailments other than the typical Lyme/co infections to deal with too.
As far as I know LymeTap will help with some of the Lyme associated lab testing but nothing more. Any little bit helps though!
Thanks for the advice cave 76!
I just found out I have an astigmatism, could that be from Lyme? I've always had perfect eyesight until about 8 months ago and it's been declining ever since about the same time my health began its rapid decline.
As of now I'm taking Interface Plus; Allmax prepro but probably not for long as it's expensive; Nattokinase; MSM; Prescription Bactrim I've had and the amoxicillin I got from the dentist. I'm debating Lactoferrin, Berberine, and CoQ10. I'm aiming more towards biofilm busters at this point. Otherwise nothing else will take effect. This stuff is all over my hair and skin. I can see under magnification and it's thick! I can't imagine what my insides must be like. Hopefully I can get the dosage right. The more I take the quicker I'll have to buy more but I want to take enough to be effective without getting real sick either. I'll fit Cats claw in after I rid some of this biofilm stuff. I have other ailments other than the typical Lyme/co infections to deal with too.
I just searched on google for
michigan lyme
and there were quite a few hits for patient groups and other sources of information.
I also am aware that there are some charitable organizations that may help pay for Lyme treatment. One is called LymeTAP ... and the other one I don't remember. Someone posted the names of these orgs here not too long ago, so you might try using the search box up above and search for lymetap, because I'm pretty sure that was in the post I read.
"But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either." Just don't give up!! There are ways. If nothing else, herbal approaches might help.
michigan lyme
and there were quite a few hits for patient groups and other sources of information.
I also am aware that there are some charitable organizations that may help pay for Lyme treatment. One is called LymeTAP ... and the other one I don't remember. Someone posted the names of these orgs here not too long ago, so you might try using the search box up above and search for lymetap, because I'm pretty sure that was in the post I read.
"But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either." Just don't give up!! There are ways. If nothing else, herbal approaches might help.
Lyme is a rich person's disease. If you don't have money, you're screwed. I have the same predicament. Because I can't work anymore, I have to rely on Medicare and disability. My llmd, who took Medicare for many years, no longer does and now I have to pay him double. I try to extend the time between appointments because I have to travel, too.
Also, I started treatment exactly six years ago and there hasn't been much of a change. But I can't afford to collect and borrow all the money I can and see someone on the east coast because what if I pick the wrong doctor? If I could ever do that, I would only have one chance to get it right because I would have to pay for the appointment, room and board...etc. I already tried this six years ago before my husband lost his job and we had savings. I went to a recommended doctor three states away but he didn't treat it aggressively enough, either.
I have never tested positive on elisa. I haven't tested positive on western blot, but I have positive bands. I pee Lyme spirochetes and my cd57 is 10. I had a large bullseye rash in 1999 that my doctor said looked like Lyme but that I couldn't get it in Michigan so he said it was ringworm. I got sick 3 years later and was misdiagnosed until 2007. I made my own diagnosis too and it turns out I was right. But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either.
Also, I started treatment exactly six years ago and there hasn't been much of a change. But I can't afford to collect and borrow all the money I can and see someone on the east coast because what if I pick the wrong doctor? If I could ever do that, I would only have one chance to get it right because I would have to pay for the appointment, room and board...etc. I already tried this six years ago before my husband lost his job and we had savings. I went to a recommended doctor three states away but he didn't treat it aggressively enough, either.
I have never tested positive on elisa. I haven't tested positive on western blot, but I have positive bands. I pee Lyme spirochetes and my cd57 is 10. I had a large bullseye rash in 1999 that my doctor said looked like Lyme but that I couldn't get it in Michigan so he said it was ringworm. I got sick 3 years later and was misdiagnosed until 2007. I made my own diagnosis too and it turns out I was right. But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either.
The horrible crawling pain you describe sounds like an awful herx. While not everyone herxes, some experience really bad ones. That usually fades with time, so hopefully she didn't write off abx altogether.
I hope your daughter hangs in there with the treatment this time. LLMDs say that you need to keep treating for at least 8 weeks past all symptoms (excepting any permanent damage). Otherwise, the patient usually relapses again. Each time it gets harder to treat. She's a lucky gal that you're there to help her.
I hope your daughter hangs in there with the treatment this time. LLMDs say that you need to keep treating for at least 8 weeks past all symptoms (excepting any permanent damage). Otherwise, the patient usually relapses again. Each time it gets harder to treat. She's a lucky gal that you're there to help her.
There is hope!! I have been caring for my daughter, who was diagnosed when she was 16, with Lyme disease by Sierra Integrative in Nevada. (I'm not even going to list all the years of going to doctors, etc., that mis-diagnosed).It was VERY expensive & painful to treat. She gave up on the treatments after getting relatively better. At 23, she had treatments from a Lyme "specialist" doctor, here in CA. The antibiotics left her in horrible, crawling on the floor pain. That was in October of 2011, she had to quit her job & move in with us. I scoured the internet for a month & came up with Boluoke Lumbrokinaise, Biofilum seaweed, Garlic 6000, Sivercillan, a good probiotic, (I'm using Synergy by Designs by Health), Heel Detox & the Byron White Products. She's back home again because she's 25 & lives the party life, that's totally incompatible with Lyme. We are ready to start treatment again. Diet for 8 weeks: vegetables & meat, homemade soup, protein drink (jay robb, egg white), stevia, honey. No fruit, dairy, grains, potatoes, corn, sugar, etc.
I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
chatteycathi
I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
chatteycathi
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I don't think there's an absolute answer to your question, because a short term course of antibiotics can actually help trigger more antibody production as dead spirochetes hit the blood stream. This scenario actually increases antibody production in the immediate term. This is called an antibiotic challenge, done before a Western Blot test, which tries to provoke enough antibodies to show up on the test.
Insufficient courses of antibiotics can leave the tougher-to-kill bugs behind. The spirochetes can hide their surface proteins, which is what the antibodies look for. They curl up into ring forms like a hedgehog curls up in a ball for protection. They also form biofilms to hide in.
In my case, I took insufficient antibiotics when I first got infected. After a week of abx, I got better. Then, I had a relapsing/remitting cycle for nearly 5 years. Once or twice a year I would have "attacks" of severe fatigue, malaise, headache, and loss of appetite. They'd last 1-3 weeks and then go away. The little buggers would go dormant for up to a year! I thought they were relapses of a bad case of mono (epstein barr) from years earlier.
So who knows what effect past courses of antibiotics have had on you. They could certainly interfere with antibody production. Also, Lyme itself can be immunosuppressive. That was the case with me. Twelve to eighteen months ago, I had no allergies, despite a life long history. Blood tests even showed I had no allergies anymore. A general IgM/IgG count showed my immune system was at the low end of "normal." I was really sick with Lyme, Bartonella, and Babesia at that time. My immune system wasn't putting up much of a fight.
This spring, now that Bartonella is gone and Lyme is nearly gone, I am definitely suffering with allergies. Yes, they're back. I am convinced it's because my immune system was suppressed last spring. This year, my immune system is back to overreacting to certain pollens, which is normal for me.
The only doctors familiar with this nightmarish complexity of Lyme are experienced LLMDs. It's rare to find a doctor who isn't clueless about the testing. They trust that the microbiologists who designed the tests and the interpretation know what they're doing. In the case of Lyme, this is a tragically wrong assumption.