I've had Lyme for a little over a year now, without knowing so. I've gone through the ****tiest part of my life this past year. In September I had brain surgery to remove a pituitary tumor. That went extremely well yet I still felt awful. In fact I felt worse.
My symptoms include: brain fog, short term memory loss, difficulty thinking clearly even forming sentences (simple conversation has become a daunting task), fatigue dispute sleep,
muscle weakness, tremors, numbness, joint pain, heart palpitations, general malaise, depression, anxiety, mood swings, amongst several over things.
I'm a 20 year old college student. I've take three semesters off already Bc I can't do it. I'm a writer. I can't write. I was an avid reader. It now takes me an hour to get through a paragraph.
The latest of symptoms would be nausea. I don't want to eat anymore. I have no hunger. I'm gluten free, dairy free and no artificial sweertners.
I have yet to receive treatment Bc I just found out I have Lyme. Is nausea part of Lyme? By the time I've finished preparing my meal, I've already thrown up. I just can't eat. Has anyone else gone through this? Is this normal?
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(breaking up text for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hi, stefi. Yes, when I was sick with lyme disease (and babesiosis and bartonella), I had nausea 24/7. If I walked into a room that had food displayed for an office party, I had to walk out because the sight of it nauseated me so badly.
The disease that causes this is likely lyme disease or even bartonella. See page 10 of Burrascano where he lists lyme symptoms and says:
Once I got good lyme treatment, this symptom went away. I lost weight as long as I had this symptom.
So, you are normal. Get to a good lyme doctor immendiately and hopefully this will go away speedily.
Yesterday I sent you the name of a good lyme doc who can see you within a few days. So, get an appointment and get your plane flight and expect to start feeling better.
Hopefully, within a few months, you will be able to go back to school.
This is a serious illness and you have to jump on it and treat it with the best lyme doctor you can to stop this in its tracks. The longer you have lyme, the more symptoms you will have as the disease continues to progress.
With lousy lyme treatment, the disease will also continue to progress.
Look at the Burrascano list of symptoms on pages 9-10 and you will see ALL of your symptoms there.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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Put the high cost of the first lyme doctor appointment on a credit card and pay it off over time. That is what people have to do since good lyme treatment (and testing) are so expensive.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Yes I saw the doctor recommendation! Thank you so much for everything! My family and I are both so grateful.
I just had one question. Do you think that it is possible to receive treatment and continue going back to school? Will that be possible? Or will the effects of the medicine and the disease be too strong to work and attend college in New York?
Posts: 113 | From Hollywood, Florida | Registered: Aug 2016
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Keebler
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- "to work and attend college in New York"?
With kindness, no.
However, could you do one distance class on your own timeline? Ask the student special services dept. or whatever it might be called.
It really needs to be open ended, though, on your own timetable. Somehow, even if they say no, you could still design a way to work for you, just maybe not yet.
Not sure how taxing your work is, though, or the setting and requirements.
I'm assuming you are writing from your family home in Florida now? If you can stay with family a bit longer I highly suggest doing so.
It's not just the treatment to consider. The illness(s) themselves, do not get better with treatment for sometime. That's a hard realization but it's not just how the effect of medicine will be, sorry.
My advice, as tough as it is to consider: do not attempt going back to college away right now. It would be best to focus on your health.
Look to January. Even then, though, a full load may be too much to consider.
Taking one class, maybe, at a local community college might work but even that could be far too much.
Getting a textbook, syllabus and reading list for one of the classes who might have taken in New York, connecting with one or more of the instructors and ask them suggestions for how you can still learn on your own at home for a while might be a way to gain a toe in the door, so to speak.
But the rigors of an academic life (especially if you would be a dorm where it's often very noisy and crowded) is likely just too much to consider. And if grades are low, that can ruin your chances at succeeding there.
If you do go, see if you can find living arrangements that will suit you with quite and healthy lifestyle.
Even in most apartments, though, the ability to rest depends on neighbors' noise that often goes right through walls, as can traffic. Ear plugs can make reading and thinking much harder, too.
The most important thing when you do consider moving is the ability to have the sound as you need in your space. And be careful with ear buds.
Hearing damage can happen with lyme and with treatment so we must protect ears more and ear buds can hurt the ear nerves, they are too close to the nerves. A larger earmuff with low sound might be okay, though,
And, if you do head back to the classroom, consider the lights and sounds. Fluorescent lights can be very rough anywhere. Flashes, too.
If you do head back, connect with whatever department handles special student services so you can get a guardian angel of sorts - and maybe a tutor.
With the nausea, you might have inner ear involvement and that, alone (even without lyme) is easy to explain as to why you need some accommodation. That's the key term: accommodation.
Even college campuses often still have very loud bells at the end start and end of each class. Many with lyme are very sound sensitive
and many of the lyme Rx can also cause sound sensitivities. Just be mindful of that.
I have a lot of experience with being ill in college(s) over many years.
Right now, it's a major educational understanding to learn what you need to know about lyme, treatment choices and how to manage your daily life under these conditions.
Staying connected to your chosen interests, though, there are still ways to do that without the expense and academic deadlines and pressures.
With kindness, this is my best advice. -
[ 08-20-2016, 02:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- stefi,
I must say that you are an incredibly strong young woman. Your words describing all you have been through are well voiced and show such character.
The journey for your life's vision is just taking more detours right now. I hope you can find beauty along these very rough and tumble roads. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- To help manage treatment better - and also to help protect ears:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- GINGER CAPSULES can help relieve nausea and dizziness. But it needs to be kept up at a therapeutic dose that only the capsules seem to provide. Although the tea can help a bit.
Take Ginger Capsules a couple hours away from Rx. It has some antioxidant properties and it may speed Rx through too fast if taken at the same time.
QUINOA FLAKES are great to have on hand. Just add boiling water to a deep bowl or mug. Cover. Wait a minute and you have an emergency meal, of sorts for a tender tummy.
Surprisingly good ratio of protein & fat, too, so this is not going to adversely affect blood glucose.
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If I were you, I would plan on going back to college in January. But, until you start lyme treatment, you can't be sure if you will be well enough in January or not.
So, after you are in treatment for about 3 months, you will then know when you can go back.
If you improve a lot right away, you can go back in January. If you still don't have your brain in November, it looks like January may be too soon.
Often, if you have just had lyme for about 1 year, once you have 3 months of GOOD lyme treatment, you will feel a lot better.
Still, you will have to decide if you have the endurance for all of this. Fatigue is the last lyme symptom to go generally.
So, you have to assess:
brain function how sick you get with the treatment how weak and fatigued you still are
If any of these is bad in Nov, Dec., then you are not yet ready for college in January 2017.
So, to answer your question, you HAVE to start lyme treatment right away.
I would not take a full load in January either. I would not want to get bad grades. I would take 2-3 classes, and nothing like gym or a sport. Just sedentary classes.
Consider that January will be bad weather in NY also. Going out into cold weather takes a lot of your energy right there. It is a stress on the body according to my lyme doctor. So, perhaps you could consider classes that wouldn't require a lot of outdoor walking to attend them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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More important to treat and get better than to try doing normal life. You have your whole life ahead of you and it will still be there when you feel better! And you will feel better when you find treatments that work for you.
We're all different when it comes to what works for us. I have nausea when my C2 vertebra is subluxated - ie, in the wrong place. The symptom goes straight to my stomach. A good chiropractor puts my neck and spine back in place and the symptoms are over with.
Lyme can affect the brain, cranial nerves and all tissues. It can affect the neck too. So I offer the above as an idea to check out.
Obviously, there's a potential issue with your pituitary situation. I think an endocrinologist would need to bloodtest you for the state of your hormones.
I had brain surgery too, since my prolactin count was way high. That's a pituitary hormone and usually indicates a pituitary tumor. The surgeon found hyperplasia but no tumor and declared me a medical mystery. I emailed him when I found out a couple decades later it was Lyme!
My prolactin remained high until I started treating for Lyme disease. First antibiotics, then natural anti-inflams and now only natural anti-inflams.
I had bloodtesting done throughout and my prolactin level kept dropping. Now it's almost in normal range, so I have been successfully treating my brain!!
I'd say my current main anti-inflam is turmeric powder. Turmeric is a powerful herb and it takes down inflammational pain for me. I get it in bulk at the health food store and dip 00-size empty capsules in it and take a couple a day. I would bet it's that one that's dropping the prolactin count - ie treating the brain.
I also drink mangosteen juice, a powerful anti-inflammatory juice. I get the Mango-Xan version, as it's the most tart. If you have any eye symptoms, it clears all of those up for me.
I tested low in thyroid. When I went on Armour thyroid, I felt present again and all brainfog cleared up. So you should get your TSH and T3 levels checked.
Getting on good antibiotics should start to hit a lot of your symptoms. Treatments usually mean killing/deterring the organisms, detoxing and fortifying the body.
Lyme patients usually take magnesium for energy, to relax the muscles, and for everything else mg is needed for.
Posts: 13116 | From San Francisco | Registered: May 2006
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Thank you all so much for the replies. You've all been such a great help, I really appreciate it.
So this semester might be out of the question I guess :/. It's okay, I've learned that my health is much more important.
I just have one more question, is treatment usually done by IV? Or is it through oral medications? I've read a bit of both but I'm not so sure as what this will entail. Since treatment is so expensive and I can't afford it, I have to thoroughly plan it all out.
You guys have been an immense help already
Posts: 113 | From Hollywood, Florida | Registered: Aug 2016
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posted
I have nausea nearly every day, though not as severe as yours. Smells of food don't bother me, I'm just plain ol' nauseous most of the time.
I originally thought it was related to my migraines, but it can happen with or without them. Light can actually exacerbate it, although I've usually got a migraine when that happens, and my eyes get painfully sensitive to light. Sounds weird, but there's an awful lot of weirdness that goes along with Lyme.
I always have Zofran nearby for the nausea, but I've found it only works for 1-2 hours for me, and then I'm just stuck. Ditto Compazine.
Zofran has an "ODT" option - oral dissolving tablet, which works quicker than the pills and you don't have to worry about throwing it up.
If anyone knows of anti-emetics that might work better than either of those drugs, I'd love to hear of them!
Posts: 112 | From USA | Registered: May 2016
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Stefi, I'm in your same position re: no money to pay for treatment. I've decided to do bee venom therapy (BVT), because it's the cheapest thing I can find (and some people think it can address co-infections, too). I figure it will cost me about $60/month.
I won't say any more on this thread so it doesn't get derailed, but there's a thread right now by someone else asking what BVT it is.
Posts: 112 | From USA | Registered: May 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Most lyme patients do not need IV treatment. We just do oral medications.
The sickest patients may need IV. (For example, having seizures, bedbound or in a wheelchair, or a complete zombie due to lyme--can't talk, comprehend, etc.) I and all my friends got well on only oral medications. I had one friend who decided to try IV because of stomach issues. She really liked it. Her insurance was unusual and they paid for it for as long as she wanted it, so she used it for 9 months.
I hope you know not to let any doctor give you steroids of any kind--cortisone, prednisone, etc. Read about it in Burrascano. It will make a case of lyme disease much, much worse as these meds suppress the immune system and allow the lyme and other coinfections to spread greatly and get into niches in the body that it is hard for antibiotics to reach.
"Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course." (p. 12)
You may have been given such meds when you had your brain surgery. But, don't continue taking these now that you know you have lyme.
Of course, if your life depended on it (for example, you couldn't breathe due to an allergic reaction), then use it but be on antibiotics for lyme at the same time.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
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quote:Originally posted by stefi42: Thank you all so much for the replies. You've all been such a great help, I really appreciate it.
So this semester might be out of the question I guess :/. It's okay, I've learned that my health is much more important.
I just have one more question, is treatment usually done by IV? Or is it through oral medications? I've read a bit of both but I'm not so sure as what this will entail. Since treatment is so expensive and I can't afford it, I have to thoroughly plan it all out.
You guys have been an immense help already
Some of your symptoms could be Lyme. Some could have been caused by a fluoroquinolone (class of drugs that cause persistent adverse reactions after they have been discontinued). These could be levaquin, cipro, avelox and many others that are given for infection, especially after surgery.
That said, even if you haven't had those drugs, best to avoid them.
I'm also going to say that it may be possible to attend school. I think doing something "normal" can help stay sane through treatment. Perhaps even 1 class, just to keep you connected to school if you can handle it.
From my experience, you don't need to have a crazy herx to heal. I've now treated Lyme 3 times (I've been infected 3 times, not relapses).
It really depends on your body and how you react to treatment.
Since you've been ill for over a year, some people treat with herbs and other methods that aren't as expensive as drugs or do a combo of drugs and herbs because that's easier on the body.
Hang in there.
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