First, I just wanted to provide a tip for those of you who have trouble reading certain sized text on the internet, you may already be familiar with it but I thought I may as well throw it out there anyway.
If you press Ctrl and the + sign on the keyboard it increases the zoom of the page making text and images larger. To decrease the zoom press Ctrl and the - sign on the keyboard.
Now about what is going on with me...
I was treated for Lyme/Bart for about 2 years, 2009-2011. We believe I was sick for a fairly long time before that but that the illness came to a head during my senior year of high school due to excess drinking and often staying out late.
Treatment seemed not to be helping me anymore during the summer of 2011 and I stopped. In terms of treatment I ran much of the basic gamut: oral tetracyclines, Beta-lactams, Mepron, to IV Rocephin and Rifampin. Eventually I just decided that that was how much better I could get and went on with my life.
I just finished up my Bachelors degree last May. And am currently enrolled in a 2 year masters program which is heavily based on the completion of federally funded research (which was very hard to obtain and pays for my tuition and bills) and a thesis/thesis defense. Forget to mention I am a 23 year old guy.
Now, fast forward to this past Febuary when I came down with a terrible cold/sinus infection that lingered until the end of March. I was put on amoxicillin for 10 days.
By day 8 I was itching/burning all over and having full on Bartonella Rashes across my back (as long as 6-7 inches and raised). It looked like I had been whipped with a willow switch. This is when I realized I needed to go back in for treatment.
My cognitive functioning (memory, critical thinking, brain fog, etc.) has slowly been declining and it has reached a point where I feel I am no longer able to have a clear enough mind to do any work, unless I take
AMPHETAMINES. This is where my serious concern comes in. They are what got me through undergrad and are what allowed me to keep pushing even though it was making me feel worse and was causing all of my Lyme/Bart symptoms to get worse.
Taking amphetamines always clears my mind in the short term (hours), however, I crash horribly and am worse cognitively than when I started.
Usually it ends up affecting my sleep, anxiety, and overall health negatively and I don't feel they can coexist with the healing process. Yet I don't know that I can accomplish what I need to with my research and school work without them.
When the realization I was still sick hit me, it was really weird, I had just blocked out the whole idea of me being ill with Lyme/Bart for the past few years and coming to acknowledge the illness again was like flipping over a rock and releasing a whole new set of emotions as well as state of consciousness.
My whole consciousness and self awareness about my mind and body changed. I feel like a compartment of my consciousness has been reopened after being sealed for a long time. It's hard to explain haha...
This realization has been both hopeful and discouraging. I am hopeful that there is a way to improve my health and well being, but discouraged that it may not be attainable with the situation I am currently in. It is very confusing.
Currently, it's almost the end of the semester and I have to finish up an analysis for selecting sample sites for this summer's field sampling.
I just feel overwhelmed and do not know if I will be able to meet my academic responsibilities without using amphetamines. In turn I am afraid this will not allow me to heal.
The field work I will be doing is somewhat strenuous and that also concerns me as I have a track record of overdoing it and crashing.
But I do not know how I can convey all of this to my major professor and the Department of Environmental Conservation supervisor in a way that both allows me to heal but doesn't put the project at risk of not getting accomplished.
I am very close with my DEC supervisor (he is really the one who I report to for my research). He is a really great guy and I know he will understand and be accommodating, it is just difficult to know how to balance the work and healing.
Besides just sharing what has been going on with my Lyme/Bart I was also hoping to maybe get some input from people in general or people who are/were in a similar situation as me.
By similar situation I mean people that are/were not incapacitated by the disease and still are/were "functional" and were forced to continue academics or a job that you knew were detrimental to your getting your disease under control.
Questions:
Any advice on taking stimulants like Vyvanse or Modafinil?
Any advice or experiences on how to talk with my supervisor about my illness and how to come up with reasonable workarounds?
I feel, as I have in the past, that explaining this illness is so difficult and that people quickly forget that it is chronic and even though you seem fine there's actually a battle of titanic proportions happening "under our skin."
Also, here's one I have been having trouble with. Borruscano stresses low carb and no starches but doesn't provide detailed information about how we are supposed to provide either 1) glucose for fuel or 2) ketones for fuel.
I did keto and paleo for months at a time before this and found I could not tolerate keto stricly over the long run. Paleo is pretty much fine.
For me it is just a question of how much carbs and from what sources. My nutrition "experiments" have me leaning towards trying to stay relatively low carb, and getting my carbs from oats, yogurt, and sweet potatoes.
I would really like to hear what some of you have to say about this subject. It is a constant source of stress and frustration for me. I also know it is hotly debated so I may get a wide range of opinions.
Thanks in advance for any replies and thank you to those who have put this great forum together. It helped me enormously my first time around and has helped me this time around as well.
P.S. I am pulsing 400 mg Moxafloxacin for 10 days followed by 500 mg Azithromycin and Tinidazole (I am on campus now and don't remember the dose of Tinidazole) for 10 days for a total of 30 days on each pulse cycle.
P.P.S. I am also aware of the severe adverse effects of the Fluoroquinolone class of drugs. I spent A LOT of time researching it and I struggled a lot with deciding whether I should take it or not.
I have decided to take it as it is a class which has been shown to work well against Bartonella and BLOs and I have already tried the other first line treatment of IV rifampin. Close monitoring of my symptoms while on this drug goes without question.
................................................
Breaking this up for easier reading for many here -
[ 04-14-2015, 10:02 PM: Message edited by: Robin123 ]
Posts: 19 | From Central NY | Registered: Apr 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tighidden,
Welcome. Sorry for why you are here, though.
Many may not be able to read and reply due to the large paragraphs. I can't. [And it has nothing to do with the size of print (that can be changed on a computer). It has to do with some breathing room for the eyes - and the brain.
It's best to keep paragraphs as they appear finished to under four lines. In composition mode, that's about 5-6 but you can go back and forth and edit to add in space breaks.
One reason for this is that nystagmus or other ways the eyes quiver or spasm is common for those with lyme and especially for those with inner ear issue on top of that. Tracking more than about 3-4 lines is nearly impossible without a space break.
Also best with each new though, question or topic to have a new paragraph.
A few words here or there I was able to grab and having had health challenges when I was in college and grad schools (yes, had to quit and then take it very slow at a different school later) . . . .
well, amphetamines can kill someone with lyme. It's not just about the stress on the heart but also on the brain and the adrenals. Adrenal crisis can be a major factor.
As I can't read more, I can't really offer you more than to just hope that you have a good LLMD who can help guide you on this, as to where you are.
But, as you say you require amphetamines to function, that really says to me that something has to stop. Because amphetamines are simply not a safe option. Best to take a leave of absence and go back another time when you are stronger.
Or take just one class . . . or sit in on one for no credit . . . somehow maintain some kind of involvement in study if possible but
it's vital to be able to accept where you are and that is that if you need stimulants to artificially keep you on life support - it's a trick. It's not going to work for long. And the damage may never be able to be undone.
I know it's hard to hear this. I had hoped others might answer by now but just wanted to say that there is no shame in admitting that your body just cannot take the path you'd like at this time, in this way. And that just has to be okay, somehow.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow... very sorry to hear, Tig. I was able to read much of what you wrote. I also have problems with large blocks of print.
It's really a tough spot you are in, especially with the amphetamines. Those are so hard to get off of when I time comes.
I do hope you have an EXCELLENT LLMD because you can't win this battle without one.
I'll move this to Medical Questions for you so that you will get more help. I'm headed off to bed .. so nite nite!
Glad you found us and I hope someone will be able to provide more helpful input.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Good to have this detail (but sorry it does not say what you wish it could). "No stimulants" although he does not go into all the reasons remember the main thing is to take care of yourself.
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Excerpt from Page 27: [Section] Supportive Therapy
CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
. . . (end excerpt. List is cont'd at link above.)
AND - in this document are also many suggestions for supportive supplements such as for adrenals, etc. Cordyceps is one of those. It's also detailed in the Adrenal links set below. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Reading some about your dilemma and not feeling fueled enough with a "low" carb approach.
"Low" carbs is meant to mean low refined carbs, not really low carbs as in complex carbohydrates of whole foods from the planet. Lots and lots of carbs as vegetables are really important - all colors and types.
Some also really need some grain like foods such as wild rice, black or red rice - all those are very low glycemic and complex carbohydrates - even suggested for those with diabetes due to how they can help keep blood sugar stable. Same for legumes.
Quinoa, millet, amaranth, buckwheat groats also options in their whole forms, in moderation with veggies still the majority of food on your plate. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Too little protein also sank me for some time. I really need animal protein and fish.
Other protein - plant protein matters, of course but I really require good quality animal / fish protein at least 2 x day, too. Eggs from happy hens, etc. Consider buffalo & lamb, too.
I was vegetarian for many years and it did not work out at all for my body. So much better when I added back in meat / fish -- but I'm clear to avoid any factory meats or farmed fish. See what works for your body. A Mediterranean approach seems most sensible (minus the wheat and the wine).
I think if you can expand your foods, you may see more brain power. Salmon helps me the most with my brain. And sardines.
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . .
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."
- 20 pages - Full article at link (or google the title if it does not go through). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I didn't read through every detail of your post. You certainly have a dilemma.
Your best bet is to consult with the LL psych in NJ. I know he prescibes meds that help cognition and focus. I think as long as you are under the care of a LL doc who knows what he is doing, you will be able to get through your schooling.
Best of luck!
Posts: 1885 | From here | Registered: Jul 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Sorry you are here, and sorry that you have to plow through this with work. It's not fair. BUT it's also a good distraction if you are able to do it.
I have bart and lyme like yourself & also take levaquin because it's extremely effective for my bart, no side effects.
Here's my personal take on stimulants. I'm always looking for something to get me out of bed. Get me through work or class and insure that I don't make major mistakes.
By far Kratom(green) is number one. It's in the coffee family but has been immeasurably helpful to get me through days. It's legal online.
Modanifinil, Provigil, Nuvigil has also been amazing for me but it's a bit stimulating. Definitely helps cognitive issues.
Adderrall was not great. I took max dosage. Caused me nervouseness but was also helpful for pain for some reason.
I know Dr. Burrascano said no stimulants but only if it affects your sleep or adrenals. And being practical, some of us have to do it....
Green and red kratom with Modanfinil gets me through until I'm better.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
I have no advice as no experience with amphetamines.
But I am impressed that you continue with field work type studies after getting lyme disease. I was not able to walk over dead grass in winter on a mowed lawn after being diagnosed with lyme. It was pavement for me for five years, and even now I only go off pavement with sprayed shoes and pants.
Posts: 2888 | From USA | Registered: Mar 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not so much about amphetamines - in theory. You say you are already experiencing more bad than good from them.
You say that "Taking amphetamines always clears my mind in the short term (hours),
however, I crash horribly and am worse cognitively than when I started. Usually it ends up affecting my sleep, anxiety, and overall health negatively . . . ." (end quote)
[In the kindest voice] That is the main concern (for heart damage & adrenal damage & maybe even nerve damage) and the really big red flag. Your LLMD is the best to consult and maybe also a LL ND.
Before talking to anyone in your department, whether colleague or supervisor,
best to confidentially talk to the office that helps students with disabilities and see what kinds of mechanisms they may have in place
to help you stay (or officially take a leave of some kind but still be "in" the program) but in a way that is not so dangerous. If you declare a disability through the formal challenges, there may be stronger mechanisms in place to help you.
This just makes sense to explore. Hope all in your quest are kind and very helpful. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow thank you all for your responses! It means a lot to get feedback and support from others who are also dealing with these diseases.
I will make sure to keep what you said in mind regarding the blocks of text, Keebler and Lymetoo.
My adrenals and HPA axis do seem to be a little messed up, who would have guessed with chronic stimulant use and Lyme!
I had some endocrine tests done and I am waiting to hear back from the Doctor. A few of my values were outside of the "normal" range.
Specifically my baseline (morning cortisol) was high, and my adrenals did not produce adequate cortisol with the Cortysin ACTH stimulation test. From what I read with this test your cortisol levels are supposed to roughly double over a 60 minute period.
Mine were at 24.2 baseline (high) and elevated to only 30.5 after 30 minutes. They didn't do a 60 minute blood draw.
My prolactin was high and outside of the "normal" range.
My TSH was on the very high end of the testing values. While my T3 was on the very low end of the values. My T4 was right in the middle.
I am not sure what this exactly means and I do not know when I will hear back from the doctor. She made it sound like it would be a while before she could look at the results.
Posts: 19 | From Central NY | Registered: Apr 2015
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posted
Keebler, fortunately it looks like I am taking care of the B-complex (methylated forms), licorice root (for stomach upset, but hey, 2 birds with one stone, eh), and Vit C portion of the adrenal fatigue equation.
Right now I am trying to get the timing down for all the supplements I am taking, but will definitely have to look into trying some of the other ones.
This afternoon I had a meal consisting of 65 grams of gluten free carbohydrates, much more than I have recently been eating in one meal, and I felt a great decrease in my anxiety and felt my body significantly loosen up.
I think that may help clear up some of my problems. I appreciate your take on the carbohydrates as well, Keebler.
Posts: 19 | From Central NY | Registered: Apr 2015
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posted
I am going to try and limit my intake of stimulants, but like Droid said, sometimes it is necessary. I really just want to finish school if I can without delay.
And I think I can. It will just be a very delicate balancing act. Having my abx start to DO SOMETHING has given me a lot of encouragement as well as hearing from all of you and getting my supplements mostly squared away...
..Kratom certainly is a very interesting little plant! It has quite the backstory I must say.
Where do you happen to order yours? I may be interested in trying it out at some point. I apologize in advance if you aren’t supposed to ask stuff like this offer the boards.
I haven’t been able to take much more than just a cursory glance at the pharmacology of the plant, but it seems like it may fit the bill for me.
With Adderrall I had the same experience as you. I used to take it in the earlier years of my undergrad but had to stop.
I switched to Vyvanse and it was IMMENSLEY better. Got rid of the anxiety and left me feeling less wiped out on the come down. It still is hard on the brain and body though.
Modafinil hasn’t impressed me too much because it left me foggy and didn’t contribute enough to helping me get things done for it to be worth it. I will probably give it another go at some point because it is much milder than the other stimulants.
Posts: 19 | From Central NY | Registered: Apr 2015
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posted
And Poppy, as I am delving back into treatment I am seriously starting to reevaluate certain aspects of my career path because of this.
We work all over NY State, including Westchester and Suffolk County, which are HIGHLY tick infested and have high rates of infected ticks.
I am planning on investing in insect repellent infused clothing. Have any of you heard anything about the effectiveness, or negative effects of them?
It also helps that we wear chest waders while we do the work and we mostly access streams (I study stream health and ecology) from road crossings and bridges.
Posts: 19 | From Central NY | Registered: Apr 2015
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posted
Luckily I have taken most of the credits I needed to and just have to finish taking about 5 credits worth of classes after this semester
Then I can devote the rest to research credits to remain as a full time student.
Oh and thanks for the advice to go to the disability services (what they call them here).
I learned around mid way through undergrad that I needed to talk with them before each semester started incase I had a flare in my symptoms and couldn't complete work on time or missed a lot of classes.
Things feel like they are looking up =)...until tomorrow when I will feel exactly the opposite lol. The roller coaster ride with this stuff is just crazy!!!
Posts: 19 | From Central NY | Registered: Apr 2015
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I am planning on investing in insect repellent infused clothing. Have any of you heard anything about the effectiveness, or negative effects of them?
- I think they are supposed to be very effective. As for safety, I really don't know. It's safer than getting a tick bite!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Stream studies are good! Just wish it was possible to get to them safely as they tend to have a lot of vegetation in the way to the streams. Do you put your waders on at the vehicle and walk to the stream, or is that too far?
Insect repelling clothing would be a good purchase. The military certainly believes in it as all their camouflage is manufactured using permethrin. And their studies show that soldiers get fewer bites when they wear this. They also tell them to tuck pants in, wear hats, make sure openings at sleeves and necks are made less tick friendly.
I visited an island that used to have a lot of ticks but no lyme. Now it has lyme and the ticks are so prevalent that one apparently dropped down from overhanging tree limbs and landed on my shoulder. Nasty critter! They are so hard to avoid.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
That is good to hear from both of you that the clothing seems to be effective!
And if the military does it there must certainly be some benefit to the clothing. That is very interesting to hear and makes a lot of sense.
Yes we leave the waders on all day usually. We literally drive around one section of the state all day collecting samples. We put the waders on, take the sample, and then drive to the next sample location.
It takes too long to keep taking the waders on and off and frankly it is just easier to leave them on. They can get awfully uncomfortable after a long hot day in July or August though!
Posts: 19 | From Central NY | Registered: Apr 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Moonkratom.com
They're good guys. Idk where they are getting it but they have an awesome source.
Red is a downer sorta for pain, green is upper. They both last for a long time. Ask for samples. They'll send you others. I also like greenleafkratom.com but they are about double the price but have a huge variety.
I guarantee kratom is a gamechanger in your life if you try it. I stopped banging the drum for it on here and everywhere else cause no one will try it. Hah.
I took little samples to our little support group. There's 7 women, one has lyme and cancer. I gave it to them...4 of them are texting me everyday saying OMG this is amazing!!!It has helped with pain, energy, and cognitive issues(green)
Completely changed their life for the better.
I know it sounds unreal but it's true.
Only drawbacks is quick tolerance development & it tastes terrible. There were 2 girls that didn't take it because they were puking trying to get it down so they didn't take it. But you can capsulate it.
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