posted
I went for my follow up appointment and told the doctor that my symptoms have not improved, but have stayed the same. He said he doesn't like to keep treating if it does not seem to be working. So basically,my only option is to go off the meds and wait for my body to fall apart. If that happens, I want my family to have me euthanized. I can't live the horror movie that lyme patients live: 24/7 migrains, 24/7 nausea, throwing up everything I eat, blindness, not being able to drive, blindness, extreme fatigue. It's a continuous torture chamber that never lets up for even a second. I won't be able to work, and will probably have to drop out of school. The f-cked up insurance companies won't give me disability, so I will probably be homeless. if I get to this point, I hope my family will be merciful enough to just let me die.
Posts: 20 | From Pittsburgh PA. | Registered: Jul 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This doctor is not a true LLMD.
Many have gotten better, maybe not great right away but there is no need to have to have the kinds & degree of symptoms you have.
You've been / are being UNDER-treated. And there are also other ways for you to do some things to help even without a doctor / until such time as you can find a real LLMD. Yours in not, I guarantee you.
You have options. Really. Ways that will help. First, connect with all the ILADS "minded" lyme support groups within a reasonable radius to you.
They can help you find what ways you can do on your own while you sort out how either find a proper LLMD (they do not give up on patients, not if they are real, true LLMD). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
But in the meantime, it will turn chronic.
Posts: 20 | From Pittsburgh PA. | Registered: Jul 2018
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So? From the hour a tick bite, we can turn chronic. Chronic can turn around. Don't be so determined that it's all over. It's not. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
A doctor who will only treat for 3 months is not an LLMD. You have a very famous one near you, are you on the waiting list?
BTW, I had Lyme for 3 decades and now have been completely well for 9 years.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Mike,
Don't assume the worst. I worked (taught) 15 years with Lyme and am happily retired now.
I am not blind. I can drive. I don't throw up everything I eat. I have never had a migraine.
You need to find a different LLMD and take a different approach. Either different antibiotics or herbs or energy medicine (rife/photon therapy)
sixgoofy and I can attest that photon therapy helps a lot. I see an energy healer.
Even with Lyme you can lead a joy filled life and you can get well.
And as many of us have already suggested, you really need to get help for your anxiety. If you can't pick up the phone or find someone to help you, ask your parents or go to the college counseling center.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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posted
Avoiding eggs, corn, gluten, soy, pork,canola oil, dairy, grains can help a lot! That helps keep infammation down and stops feeding the bugs.
Eating veggies, low fat, grass fed meat (if you eat meat), fruit (antioxidants), sweet potatoes, even white potatoes (have natural lysine in them which helps stop viral replication).
Stay hydrated.
Everyone is different but try to not eat the trigger foods that feed invader bugs and be faithful in avoiding those things. It can really help turn a case.
Chin up You can get well. That's the good news.
Turn your wifi off at night. Ground daily for at least an hour.
Avoid eating anything out of a box or can if possible.
posted
Well than i'm screwed!!! I eat grain (oatmeal) every morning. Lots of eggs. I had pork chops last night. I'm just going to become anorexic, as that seems to be the only way to beat lyme.
Posts: 20 | From Pittsburgh PA. | Registered: Jul 2018
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posted
You don't want to stop eating. Just do your best to eat as healthy as you can. Fresh foods, not processed.
You told me that your doctor still has you on antibiotics, that he changed them up. He may have said he doesn't like to use the same antibiotics if they're not working, and that makes sense. That doesn't mean he's giving up. Neither should you.
You've said on other threads that you're also on a good regimen of herbs. (It might be helpful to keep posting on the same thread so that all the information is in one place so others can have all the information when they try to help).
You have to give protocols time. And if they're not working, you do have to switch things up. And be sure to tell your doctor how anxious you are about the whole thing. Some of the meds or herbs may be causing the anxiety or there may be some way he can help you with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Mike,
Definitely eat. I go by the rule of "Everything in moderation." It is okay to eat oatmeal, but I always add protein in at breakfast with some kind of meat (or eggs).
I lost way too much weight trying to eat correctly when I was on antibiotics. Losing the weight set my healing way back.
There is no one diet for all people with Lyme Disease.
There is no one definite treatment protocol for all people with Lyme Disease.
One treatment may work for awhile and then you need to try something different.
Exercise is super important, especially weight bearing type exercises. Not only keeps the body strong and helps the immune system, but helps relieve stress.
Attitude is probably the most important healing tool you have. We all have our down times, but try to think positive that you will get well.
And, for me, I lean on God bigtime. For me, prayer and knowing God is there really helps.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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posted
I would avoid eggs for sure. Vaccine pathogens are fed eggs. That's why people who are allergic to eggs should not be vaccinated otherwise they could have an allergic reaction.
Dr. H's docu said they found Hep B vaccines were laced with CMV, EBV, Mycoplasma and HH6 (human herpes 6). That could partly help explain why cases can be complex. This bit of information is very interesting and important and it really makes sense to not feed viruses. Viruses love corn, pork, eggs, dairy, gluten.
If we can put a major kink into the replication of viruses that are causing chronic fatigue, brain inflammation, etc. then it starts taking a load off of the body's immune system.
It really is a swirling vortex of variables for everyone but my conclusion was to make the terrain of the body as strong as possible.
Simple things such as noticing if something eaten causes the ears to feel full. If so, then avoid that food as it is making mucous that plugs up everything.
If a food causes a phlegm ball in the back of the throat then that food should be avoided.
posted
If you can eat eggs and oatmeal that's good. I can't eat eggs because I'm allergic, and eating oatmeaL used to make me feel sick.
Not eating is a bad idea. I think it probably makes the Lyme go dormant so you might feel better for a while, but that is not a good thing because then it comes back later.
It might help to find out if anxiety is playing a role in your symptoms. It probably sounds stupid, but I was always told to do the thing I was most afraid of. It never really worked for me, because I couldn't force myself to do anything I was afraid of, but when circumstances forced me to, I really felt a lot better afterwards.
Maybe you should not be afraid of getting off antibiotics, you could go off them for a week or two, and then you could evaluate, and see if you want to try different antibiotics if the ones you are taking aren't doing anything.
-------------------- chronic Lyme/Bartonella
Inside every sick person is a well person waiting to be freed Posts: 232 | From new england | Registered: Nov 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said... "I went for my follow up appointment and told the doctor that my symptoms have not improved, but have stayed the same. He said he doesn't like to keep treating if it does not seem to be working."
Good info for others...
If a LLMD or really any doctor is not able to help you they shouldn't keep you as a patient.
If a doctor says he/she can't help you and/or you don't feel you are being helped...
Move along.
If you don't, it is a waste of the doctors time, and your time and money.
posted
Find a doctor that will treat like Dr C or Dr K. Chech the posts on proto that I updated. PEMF, infrared sauna, juicing, and probiotics.
Posts: 697 | From CA | Registered: Dec 2011
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posted
Way too soon to give up, Mike. I had Lyme for 42 years before being diagnosed. After four years of treatment I was doing FINE!
I now have other issues, but life goes on. I lead a full and happy life.
Work on the LIVING part of life.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Mike, I don't post here very often anymore because our daughter, the chronic Lyme patient in our family for nearly 3 decades, made a complete recovery nearly ten years ago after severe debilitation to the extent that she missed all 4 yrs of H.S. on the homebound program and had to take the GED to graduate.
However, your topic caught my attention and I felt compelled to respond. There is indeed hope, even for late-stage, advanced cases of chronic Lyme (plus co-infections).
What turned things around for our daughter was going strictly gluten free, which means learning to recognize "hidden" gluten and "cross-contamination" with gluten -- in other words an extremely strict GF diet.
Here's what we now believe about the connection between Lyme and gluten sensitivity and/or actual celiac: Bb produces toxins which interfere with the tight junctions inside the intestinal mucosa, leading to leaky gut.
Well, gluten is an ultra-small molecule which can easily pass between the cells lining the GI tract whenever these tight junctions are impaired by Lyme toxins.
Especially in persons who carry a gene for celiac, leaky gut can lead to an immunological reaction against gluten whenever it gets into the blood stream undigested, which occurs when one has leaky gut (caused by the Lyme toxins).
I hope I'm explaining this so that you can grasp it. Unless you are motivated to be 100% gluten free -- 100% of the time -- then you are bound to have symptoms which resemble Lyme disease, including all of the neurological symptoms and also the arthritic symptoms.
If you visit some of the celiac forums, you will quickly realize to what extent Lyme symptoms overlap with celiac symptoms.
In our experience, it has not been necessary to avoid so many other foods as long as she is extremely careful to avoid all sources of gluten without any room for error.
Good luck. I hope this tip is enough to turn things around for you, but do give it at least six weeks before giving up because it takes that long for healing to start to occur whenever the GI damage has been extensive.
One more important point which can be confusing if you don't know to expect it. Once you do go strictly gluten free, you will become infinitely more sensitive to gluten for the entire first year (or even longer), so don't be surprised it this happens. It's all part of the recovery process.
Posts: 4563 | From TX | Registered: Sep 2002
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Mike I felt like you too. I still have days where I want to throw in the towel and crawl in a hole to fade away.
I have been living with this for probably more than 20-30 years. I will tell you the food part was very hard for me too. I still struggle with that. I LOVE food. but- gluten free while not easy is important. I am not the best lyme diet follower and I have never heard to not eat eggs, but I think
what I learned to do for ME is to eat what my body craves. as long as it's not sugar. I crave sugar only when I eat it for some stupid reason and then I have a hard time again quitting it.
so I eat eggs only when my body tells me to, or carrots, or beef, or whatever. that is mostly how I sty to decide what to eat. I have never had a real llmd but i am scheduled to see one finally .
I think that will help me stay on track I hope.
I know its hard. im sorry you have to go through this. im sorry we all do. it isn't fair. but I will tell you for sure there can be good days ahead again. for sure. some days now I even forget for hours that I even have health issues.
if I get bad days I tell myself they are temporary. it helps to tell yourself that to remind yourself there WILL be a good day again.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
My heart goes out to you. I have these Lyme diseases, and three young adult children with the same struggles. I’m sorry you are going through this.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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quote:Originally posted by Robin123: Mike's last response here was Sept 5...
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
He started another thread more recently.
Topic: These greedy, incompetent lyme doctors will be the cause of my chronic lyme
Sorry I don't know how to get you to that thread automatically. Think it was September 21.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8878 | From Illinois | Registered: Aug 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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