posted
i am 21 and i live in Ottawa Ontario Canada. things are very terrible. i cannot do anything. i just have nothing to say, typing is hard, actions are hard, sometimes it feels like breathing is hard. getting home is hard, to the point where i wonder if i am even going to make it home. i don't feel any emotions anymore other than what can be classified as what people with personality disorders feel. i tried to do school, i fail every time. i waste my dads money. i am on disability, and i think i just lead everyone to believe that i am a lazy ******* with a weak mind. i investigated lyme because it is one of the few things that documented spontaneous extrapyamidal symptoms. i have episodes of twitching (almost daily), needing to grimace and stretch my face, extreme agitation like i need to pull every muscle in every direction, like i have a bubbling electricity under my skin. and to top that off i never make sense anymore. i can't say anything that feels like i am saying anything like my words are catching on hooks and being lost. i am confused by everything... clicking on thing in teh computer, getting food, keeping clean, everything. i don't know where i can go with this because when i talk to people i feel like i am just led quietly back into this hole where i belong.
anyway, my ND gave me her authorization to get the test through igenex. it says my western blot IgM is positive, and that IgG and PCR are clear negatives. i cant remember for certain as i can't find the copies i made (my place is an unlivable disaster) but im pretty sure the positive bands were 23-25 (or that one that was the range), 41 (i think), and a strong 31 (this i remember for sure)... when i called dr. H., he said that this was congruent with a positive lyme result. as have lyme association type numbers. (ontario and canlyme)... i don't know how certain this is but it seems to suggest over 90% chance.
i saw a doctor after so much searching who wopuld finally see me (very very very few in ontario, it seemed hopless until after a month i asked the pharmacist the right question "is there anyone else that may possibly be able to help?" which is normally an impossible-type question for me to ask.) now i am on 200mg doxycycline x2 a day (4 days, 500mg flagyl x2 a day (3 days), then repeat. he says he does not rx iv antibiotics period. he had another test he offered to send off, but i was unsure if i could afford at the time (my dad has since offered to help with this) it was the urine lyme dot blot one i think...
oh god i have no idea what i am doing but this is unbearable and nobody understands. i have had numerous psychiatic/learningdisorder type diagnoses throughout my life, and now it has swung to MDs saying basically that i just have personality disorders. i feel like i have been blacklisted, and the psychologist i see says i am nothing like anyone who has either borderline or histrionic personality disorders and he has seen me for the most time out of any of them. i am also transgendered and some other transgendered people have suggested that i have been easily targetted for these diagnoses because of this as well. it has been made clear that they do not want to help, and just want me to pull of out of this paralysis myself. i sit at this computer feeling my wierd strained frozen face, on my bed, and i don't move much from here every day. every task is exhausting, i have no clean clothes, i don't talk to people other than mydad and i do not choose to live this way. i am not purposefully overwhelmed by anything that comes to me. it is this way always. its is not a scam.
is this possibly lyme? the test could still be a false positive, and lyme even if i had it could not even account for my symptoms? are the oral antibiotics going to do anything? i want to be able to goto school again. should i be seeing a different doctor outside of canada? is there any hope to this or am i barking up the wrong tree.
i am sorry to sound so desperate but if anyone has any help it would be very very appreciated. xo daniel b.
[ 31. December 2005, 11:26 AM: Message edited by: danielb ]
Posts: 244 | From Ottawa | Registered: Dec 2005
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posted
sorry i noticed it censored one of my words... i didnt mean to swear and i am sorry if anytjing in my message was crude. i am just trying to get all this out before just freezing again. this makes no sense even if learning disabilities/psychiatric/personality diagnoses were true. when i was young i was constantly told i was gifted, skipped a grade and put into gifted programs and then just decayed and decayed... this doesnt describe anything other than some sort of extreme poison whether lyme, or something else.
Posts: 244 | From Ottawa | Registered: Dec 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
daniel, I'm sorry things are as awful as they are right now. Most of us have been there in one way or another. Many of us in a lot of them, you're story rings true on many levels for me.
My understanding is false positives are pretty rare, while false negatives abound. I tested negative when I was diagnosed and was treated based on the clinical symptoms. I had an awful lot. I think 38 out of 43 on the checklist at that time.
So my personal opinion, not being a medical professional and all, is sure it could be lyme. Doesn't have to be but odds are pretty good with the positive test and all.
I have a question... How long have you been on the antibiotics for? Did you just start and how do you feel on them?
The reason I'm asking is many, not all, people feel worse when they start treatment do to the die off of the bacteria. It was a tell-tale sign for me; for years I kept getting sicker from every antibiotic i tried to take for strep throat/bronchitis/whatever. I thought I was allergic to every antibiotic invented.
I hope this helps in some small way and know you're not alone, k?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
This info is geared towards people without a medical background, and may be easier to read.
Lyme Disease can cause all kinds of mental health problems. Depression, anxiety, obsessive compulsive, attention deficit, manic depressive.
The lack of motivation and poor organizational skills are common with many of us Lymies. I should know....sigh.....
It sounds like you have seen a doctor who knows something about Lyme, and you are getting antibiotics.
You are wondering if the test was a false positive? From what you write, it looks as though the doctor thinks you have Lyme. How long have you been on the antibiotics?
Yes, Lyme could be the cause of all your mental health symptoms.
There are supplements you can take that may help in this regard. These two are important: Fish oil capsules Magnesium glycinate
It sounds as if you need someone to help you with "activities of daily living." At least until you start to feel better.
Wishing you the best, Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Daniel, My heart goes out to you for I have been lost in this disease myself.
I exhibited many of your symptoms early on and orals helped but then I relapsed(never really got rid of the chetes in the first place) I was initially refused IV abx.
You sound like you have a high load and neuro lyme. You will need IV abx sometime in your future IMO.
THERE IS HOPE.......so don't go doing anything self destructive...believe me we have all thought of this from one time or another.
Your doc has given you doxy but at a very low dose...the flagyl will affect the cyst form...but I think you need to tell doc you need to increase the dose of doxy or try Ketek or go on IV abx.
Hang in there...you'll get better it just takes time....especially when you're peeing on a forest fire....
you should try and find a LLMD....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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There is Hope...Absolutely. I am sorry you are experiencing all of these symptoms and don't have the support you need right now.
I found myself in a similiar dark hole last year but with really aggressive oral therapy I am so much better. I still have some symptoms but I can function again and have regained my health.
You can and will. You have a positive test. Try to just not be around people that question it. These people have no clue what you are going through and will never understand it unless they ever have to go through it too.
These tick borne illnesses are insipid and in my case, when I started getting better, I realized that it was affecting how I felt and related to people in ways I had not even been conscious of.
So take care. Definitely check out the newbie links. There is a doctor in NY who puts out treatment guidelines every year...Dr. B - Read those guidelines...I bet they are in the newbie links.
Last year at this time I was only in the third month of treatment....I was so ill...I couldn't think, I couldn't even read because my eyes would dart off the page and I would forget what I had just read.
I just graduated from an eight month program in Massage Therapy - I passed with A's even in anatomy and physiology. My brain is better then I think it has ever been. There is lots of HOPE, I promise you...you just can't give up and you have to fight with every ounce of energy you have left which I know you don't have a lot of, but believe me I didn't think I even had an ounce left last year but the speck I did have left was all I needed and just sheer determination.
You have to treat this stuff aggressively.
Wishing you well days ahead...
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Daniel,
You mentioned having been in contact with Dr. H in CA. By the way, we try to avoid using doctors names here as there is some wierd political persecution here of doctors who treat Lyme aggresively. Would you please edit your post?
Anyway, do you think your doctor would be willing to coordinate treatment with Dr.H? It might be able to be handled on a doc to doc consult or, you might need to go see him first. He is very well known and from everything I hear, exceptionally kind.
In my layman's opinion, when you have symptoms consitent with Lyme and a positive test you are probably looking at Lyme. As ill as you are, you will almost certainly need a much more aggressive approach. This might be IV's. On the other hand, many have done well on combinations of orals. I have done very well on Biaxin pills and Bicillin shots.
Keep reading here because there certainly is a lot of hope for your situation. There is a thread called "Success Stories." Searching it from the archives (CLick "search" near the top of the page) and reading it might help you.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
sorry, i think i read about that but i forgot about that. i edited my post. (sorry i tried to write an actual reply about things that was important, but it fell apart and didn't make much cogent sense. i am going to rest a bit, i'll be back soon)
thank you everyone for replying. i very very much appreciate it.
i am replying again shortly. (hopefully in 45mins-2hrs) just resting to hopefully make more sense.
Posts: 244 | From Ottawa | Registered: Dec 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Daniel, My heart goes out to you. If there's any way to manage it, try to get to a LLMD. Fly somewhere if necessary.
It can feel really awful if people question your sanity or the severity of what you're going through. You've already gotten some really good advice. Mostly, just hang in there and try to get the best medical help you can.
Also, for me, symptoms did get markedly worse on antibiotics than they had been.
I'm far from being well now (after 7 months of treatment), but I'm one heck of a lot better than I was in June.
Take care of yourself,
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Hang in there. Lyme and its co-infections can be beaten, but it takes time(read - years). But you should start seeing a difference soon, in a month or two.
If you have a positive result from Igenex, I personally wouldn't question it, particulary with the symptoms that you have.
A Mg supplement should help the twitching you are talking about. Do a search on Lymenet for Mg and you will see Marnie's posts...a good starting point for Mg.
Also your LLMD should be suggesting a detox routine that goes along with the abx. I would read Burrascanso's 2005 treatment guideslines to get you started on a detox routing - see Borrelia neurotoxin - Cholestyramine.
Do not give up...as long as you are getting treated you will evenually get better, although at first the herxing seems unbearable. That is why you should start detoxing as soon as possible.
To give you some hope, in 2000, I thought I had lost the battle, and had almost given up...but didn't and continued with treatment. By 2004, I felt so good that I climbed Mt Rainier(one of the hardest endurance climbs in the lower 48 states) with my son!
You can do this....just persist with the treatment, detox and exercise!
Good Luck, Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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posted
sorry i haven't replied in a long time. i have had a horrible time lately, to the point of feeling almost as suicide fixated as i did in my teens. i think because i have haven't been eating, the doxycycline is making my stomach very painful and needing to vomit, particularly acidy biley yucky crap. am i just throwing it the medicine? is there a way i could coat my stomach to get rid of the pain and vomiting without having to eat? i have no food in my house, but i do have a lot of vitamins (and meds, in which i think a dexedrine experiment and the caffeine pills are just making it worse, and not helping me get out of bed at all, and the dexedrine just gave me very unhelpful mood fluctuations of extremes. it made me pace, euphoric and my behaviour humiliating and i crashed terribly. (awkwardly it didn't do anything at all as much like this when i used to take it a year ago.) i have some zantac as well somewhere, would this be at all helpful? i have some teas as well, but they're all pretty generic and candy-like.
Posts: 244 | From Ottawa | Registered: Dec 2005
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posted
i have also been really cold and achey since last night, if that's a paradoxically good sign?
Posts: 244 | From Ottawa | Registered: Dec 2005
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posted
i also forgot to say that think i may often have low blood levels of drugs for some reason. this has happened with desipramine before. also with other psych meds, they have almost always required high doses to be any benefit at all, while so many still cause very squirelly side effects even at low doses. should i call my doctors office and try my best to ask if i can up the dose to 300mg 2x a day? (hopefully there is a quick fix to stomach problems?)
Posts: 244 | From Ottawa | Registered: Dec 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
daniel, Maybe call the doctor and ask if you can take Prilosec or something similar so the doxy is easier to take. My doc had me do that for a short time. Don't do it without asking though, k?
Now, it's important that you eat! I had to eat with the doxy, even something like crackers to stop it being so acidy.
I'd hold off on taking any other meds and/or supplements until you talk to the doctor.
Don't ask to raise the doxy, it's bad enough right now, you can always raise it later once you're able to tolerate it.
And yeah, you might find that as bad as you feel right now may be a herx off the doxy and you'll feel better eventually. First get some food either way. (Can you call out for something?)
disclaimer: I am so not a medical professional, it's not funny. Please don't take anything I say as medical advise.
ps. no speed unless it's prescribed for you, at this time. You'll want to eat even less and crashing will only add to the already miserable depression, k?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
Danielb, Some people have used the angel flight program to get to doctors in other states. You really do need to find a good doctor. This is such a complex illness, it is almost impossible to manage alone. Do you have such a program in Canada? I don't know if the one in the States would be able to travel into Canada. Does anyone else have a better handle on this program? Hang in there... and vent among your fellow sufferers here as needed! I don't know about others, but I found my way to this group at about 4:30 one morning when desparation overwhelmed all other emotions. This group has been a lifesaver.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi DanielB
I have been as sick as you are- You will get Better --I Have--
Food-- You have to eat--this is what I did-- I ordered Chinines Food Delivered-- Get chicken vegetable type- Get the rice on the side- Dont eat the rice --throw it away--
Get enough food for 3 or 4 days- at a time-- Then you dont have to think about it for awhile - makes things much eaiser- Make Sure there is No MSG in food--
The chinines food it fairly good for you and is not very expencive-- Cheaper than making it my self--
Tests The tests for lyme are poor at best-- The way the test is designed False Positive are Not Likely--
From your symptoms and test results- Its perty sure you have lyme and or co infections-- This is a good thing-- At least you know what is wrong-- Now you can start to get Better--
All my life I had been a very active person --Till I got sick-- Things then went down hill fast--
Some people including doctors thought I was faking it and being Lazy--
Try to quit thinking about what others think--You know you are sick-- And Now you know Why you are sick-- So things are looking Better for you-
I look back at the day I figured out I have Lyme as a Very Good Day--- You will too --
Meds-- If you have been being treated for only a short time-- you are going to feel worse for awhile---
When the germs are killed they release things into your body that are going to make symptoms flair up and bring on new ones also- This is called a Herx--
Flagyl is a Strong ABX and can cause this Herx reaction to be very intence--Ouch
Flagyl can cause you to have emoniotal problems as well while taking- so becareful --
It may be a good idea to get the germ load down in your body before using Flagyl any more--
After things clam down for awhile try to increase your dose of Doxicycline--Go slowly-- It works better at higher dose-- Spread the doses Threw the day--
Drink lots of water-- Dont eat citrus of any type-- Dont eat cranberries --
Dont take any vitimins for now-- Vitimins mess with the doxi-- and your stomic--
Read up on doxi ---
You can get over being sick-- It takes awhile tho --
I was very sick for 18 years before I figured out what was wrong with me-- I thought about doing my self in hundreds of times--
A year ago I decided that if I was still very sick at the end of 2005--I would pull the plug--
Luckily I have made Huge progress after finding a LLMD to help me--
So I dont think about the plug thing any more---
You are going to have to be Good to your stomic-- It is going threw alot right now and is not Happy--
Cut out All Junk Food-- No pizza- chips -sodas ect If you drink coffie switch to tea slowly -- tea is good for you--
Daniel You have to- Keep it Together- for a little while longer --
You can do it--
Now that you Know why you are sick --You will get Better-- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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I'm sorry that you are in such a very difficult situation, putting it mildly. It's a rough ride, so I'm counting on you to Hold On!! And YES, there is HOPE.
I'm a newbie here, but I can speak to a couple of things:
I'm very concerned about your emotional and mental state. Please don't wait, contact your Dr. for some help with this right away.
Eat something good for you: One reason your stomach may be bothering you is that you are downing vitamins and meds on an empty stomach. That's torture on the stomach.
You need some good food for strength as well. It may help ground you. If you can't shop/cook, ask for help. You mentioned your Dad, can he bring you some meals, or can he ask others to?
Meds/Supplements: As someone above said, hold off on these until you talk to your doctor. Then, when ready to start again, add back only one at a time for several days to see how you react or tolerate them. Keep a journal on this, or a sheet of paper with your results if you can.
Doxycycline: This is not well tolerated by many people, you sound like one of them. Call your doctor, explain your symptoms, and ask for a prescription for a different ABX. There are other choices.
I also had upset stomach, nausea with it after a week. My Dr. told me to stop, and got me on Zithromax (Azithromycin). I've been taking that for about 10 days now, and no stomach problems.
Dexadrine and caffeine: Stop taking these. Not good for Lymies. You say yourself that they are contributing to your mood swings, and they could be contributing to your other psych problems.
Take care, we're here for you reaching out to you. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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Make sure you are drinking at least one full glass of water with the doxy. It really can't be stressed enough.
I had thought that I couldn't tolerate doxy because each time I took it I would get horrible cramping and nausea. Even having a few crackers with it wasn't helping enough. My problem was solved by having the crackers and at least one full glass of WATER !
So have something in your stomach and drink the water, it really helps. Also remember-- do not lay down for a while after taking doxy, I did that once and had severe heartburn for a whole day.
Hope you feel better soon.
Sandy
Posts: 99 | From central NJ | Registered: Jan 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by danielb: sorry i haven't replied in a long time. i have had a horrible time lately, to the point of feeling almost as suicide fixated as i did in my teens. i think because i have haven't been eating, the doxycycline is making my stomach very painful and needing to vomit, particularly acidy biley yucky crap. am i just throwing it the medicine? is there a way i could coat my stomach to get rid of the pain and vomiting without having to eat? i have no food in my house, but i do have a lot of vitamins (and meds, in which i think a dexedrine experiment and the caffeine pills are just making it worse, and not helping me get out of bed at all, and the dexedrine just gave me very unhelpful mood fluctuations of extremes. it made me pace, euphoric and my behaviour humiliating and i crashed terribly. (awkwardly it didn't do anything at all as much like this when i used to take it a year ago.) i have some zantac as well somewhere, would this be at all helpful? i have some teas as well, but they're all pretty generic and candy-like.
You need to drink extra water on doxy
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