me
Frequent Contributor (1K+ posts)
Member # 45475
posted
So, it looks like I'm going to need treatment a lot longer than I recently began to anticipate.
I had resigned myself to the that that I was hopeless and never going to get better. I don't know how I got through the extra hard times. I really don't.
I started making progress. Based on the progress, I thought I'd be finished with treatment a lot sooner than it looks like it may happen. My LLMD is pleased w my progress thus far. Could be 2-4 years or longer. Doc will be pleased if it is less than two years.
Although I've made improvement, I don't know how I'm going to keep doing this. I'm tired of all of this. I have good days now, which I had come to the point of not having.
But this week has been extra rough. Weepy, depressed. More fatigued. And I wonder how I did it and I don't want to keep going through this. I dunno if it's a flare-up, if I'm regressing, or what.
I know I'm rambling. I'm scared and tired and bummed that this is treatment is going to take so long. I should be grateful I've made progress. But what if I never get better, too? I had started thinking I was going to get better, and I was going to get better soon.
This week was bad. And I guess you all know when times are bad, they feel really extra bad.
I'm terrified I'm regressing and don't want to deal with neuropsych symptoms that seem to be flaring. Extreme depression, random crying. Is my babesia becoming resistant??
Is it a Lyme and cos flare? Am I regressing? I just don't know about any of this.
I don't even know what I'm asking for help with right now. I guess support and thoughts as to whether I'm regressing, having a flare-up, or my babesia is becoming resistant.
Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Do you keep track of the 4-week lyme cycle? If so, are you due for a few bad days? I always counted 4 weeks ahead when I hit a bad spell and then wrote on the calendar "bad day." This way, when it hits, you aren't full of fear and wondering what is happening.
The peace this tracking gives you is well worth the trouble of looking for a pattern.
Even if you never had a 4-week flare pattern before, you can develop a clear one once you are in treatment for a while. So, mark the calendar now and see if you see a pattern in future.
2. Have you added any new meds in the last 6 weeks, or even new supplements?
Some meds have this as a side effect--such as Mepron with its famous "Mepron Blues."
Biaxin gave me mental and physical symptoms. So, read your medication inserts or go on line.
Even upping a dose can bring these things on. Have you increased dosage of any med or supp?
3. Is it time for PMS?
4. Have you taken away any meds or supplements? For example, have you stopped an anti-anxiety pill or an antidepressant?
My strong guess is that this is a regular lyme flare because you have more fatigue with it.
I have seen folks come on here for the last 13 years fearing that they were regressing. Or, think their disease is becoming resistant to treatment. In your case, I seriously doubt that either is happening.
So, check your calendar and think back about any changes in the last 6 weeks.
For the crying, you may just want to take an anti-anxiety med for the next few days. (Xanax, etc.)
That's my advice. Hope to hear from you soon that you have figured it out or it has passed.
We have all been there! Hang in there!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Perhaps an outing would cheer you? You might enjoy going swimming with Mr. Bean. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I started keeping a Lyme diary recently. Unfortunately, I have to be on all the meds I'm on. My cycle is kinda all over the place, so it's hard to tell if it's PMS.
Re: med changes. Great thought. I started NuVigil a few weeks ago and have been tolerating it well . . . I think I would have had more immediate side effects with this drug??? When I tried in in the past but was sicker than I am now, I could tell almost immediately that I couldn't tolerate it. It increased my anxiety.
But I just looked up NuVigil and crying and apparently there is a link between the two. Who knows. NuVigil has given me more energy to do things.
Well, I guess I will stop it and see what happens.
Posts: 1431 | From USA | Registered: Mar 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When you say "I have to be on all the meds I'm on" I'm thinking that you don't realize that if a new med is causing you terrible side effects, then you DON'T have to be on it.
That occasionally happens to all lyme patients.
Besides the NuVigil, have you added any new meds or increased the dosage of any? Have you checked all meds for these possible side effects?
Here are some NuVigil side effects:
Stop using Nuvigil and call your doctor at once if you have:
•bruising, severe tingling, numbness, pain, muscle weakness;
•unusual bleeding (nosebleeds, bleeding gums);
•mouth sores, trouble swallowing;
•depression, anxiety, hallucinations, aggression, unusual thoughts or behavior, suicidal thoughts;
from Drugs.com
Posts: 9931 | From Maryland | Registered: Dec 2007
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Yes, you are correct. I don't have to be in NuVigil. I do need to be on the other ones-unless there are side effects that develop. I had totally forgotten about the NuVigil until you asked if any new meds had been added. I think you may be on the right track! Thanks so much, TF.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Jordon Fisher-Smith's very short talk at the end of this version of Under Our Skin may help. You too big J, if you are reading this.
This link to watch for free (thanks to the person who shared this link earlier)
posted
I have had Lymes Babesis Bartonella since chiildhood. Almost 5 years straight antibiotics didn't work just hurt my immunity and gave temporary help...which I so needed at that time...am presently Lymes active. I am on the tint Sparga from NutraMedix and it helps with virtigo! If dieoff Hyerxhimer is bad I use the Parsley tint with it. I am up to 6 drops in AM only. I am sorry you feel bad! I have been there! I thought I would treat ... get better and go on with life! I think accepting where I am and gratitude that I could be worse, and was worse helps my moral. Tint have helped, I could be in a wheel chair like a little girl I met. My Dr told me "You have to fight! And don't give up what you can do." I do fight it and when I remember to be grateful for what I HAVE instead of comparing myself to others ...instead I compare myself to where I was when I first was diagnosed. I have multiple bands of lymes. Being outside in the SUN will boost Vit D and mood plus immunity! I find if I walk it helps a lot ... releases Serotonin which makes you feel good. Cutting gluten rice pasta and sugar has help a great deal ... eventually I could on occasion have these, just not everyday. Oh, and I use honey...sugar feeds disease. PLEASE JUST KNOW YOU'RE NOT ALONE! I know it feels like that! Take care!
posted
I have had Lymes Babesis Bartonella since chiildhood. Almost 5 years straight antibiotics didn't work just hurt my immunity and gave temporary help...which I so needed at that time...am presently Lymes active. I am on the tint Sparga from NutraMedix and it helps with virtigo! If dieoff Hyerxhimer is bad I use the Parsley tint with it. I am up to 6 drops in AM only. I am sorry you feel bad! I have been there! I thought I would treat ... get better and go on with life! I think accepting where I am and gratitude that I could be worse, and was worse helps my moral. Tint have helped, I could be in a wheel chair like a little girl I met. My Dr told me "You have to fight! And don't give up what you can do." I do fight it and when I remember to be grateful for what I HAVE instead of comparing myself to others ...instead I compare myself to where I was when I first was diagnosed. I have multiple bands of lymes. Being outside in the SUN will boost Vit D and mood plus immunity! I find if I walk it helps a lot ... releases Serotonin which makes you feel good. Cutting gluten rice pasta and sugar has help a great deal ... eventually I could on occasion have these, just not everyday. Oh, and I use honey...sugar feeds disease. PLEASE JUST KNOW YOU'RE NOT ALONE! I know it feels like that! Take care!
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