posted
Ok, May 6 I begin my doxy. I have Neuroborreliosis mimicing MS with brain/spine lesions. I am 300 LBS from depression and must lose the weight asap. I have sleep apnea and am not sleeping, thus not getting the rest that a Lymie needs, thus fatigue. I now realize that I have to stay out of the sun and I cannot excercise (?), so what am I suppose to be, Danny Devito as the Panguine in Batman II? Should I find a cave to avoid sun and work? I am being told that all will be OK, but after my fall the other day and twisting 2 ankles I am far from OK. WHERE WILL IT END? I read people saying that they have never got better, and all of these drugs. For what? The only other drug choice for me this summer will stain my teeth and skin. Nice! I do not want to drag people down. BUT, I only have 1 positive band and it does not meet CDC criteria. I have multiple lesions in the brain and on the spine. I am only 27. These lesions must be as old as my teen years.
I understand your desperate need for answers. Unfortunately, we don't have a magic ball (nor do the doctors). You have yet to try how doxy works for you, and although this is a mild treatment, you might start to feel the benefits from it. Trust your doctors (or change docs if you feel the treatment is inappropiate) and work with them so that together you can try your best to get your health back!
I recommend laying off the sugars in your diet and reducing carbohydrates as much as you can. It helped me tremendously to do so, and many lymies mention it works for them as well. Our metabolism slows down with Lyme so most people gain weight and then start losing it during treatment.
Anyway, please be patient, don't hesitate to come to this board and ask questions. There are tons of wonderful people here to help you get through this.
And it's NOT true that no one improves! I know plenty of people who have improved - I am one of those cases! No, my life will never be the same as prior to Lyme, but I am now able to lead a good balanced life. If I did it, you can too!
Being young also helps, so don't see it as a liability but rather an opportunity to get better faster. (I'm 26 myself, and started treatment when I was 21)
Best wishes!!!!!
Ohhh, and ONE more thing....... for your own good - try to stop smoking!
Posts: 712 | From Ottawa, ON, Canada | Registered: Sep 2002
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posted
Lost city....You do need to follow the diet for best results and to increase your chances of getting well! Side benefit: you'll lose weight!
Can't you get your dr to prescribe something else for the summer? There are plenty of other meds to choose from.
Was your test thru Igenex??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LostCityAgent
Unregistered
posted
Yes, my test was thru Igenex labs. Apparently 1 band lit up and Doctor P says that I am positive for Lyme.
He is a great doctor, I am the problem. So American, wanting instant results and can be a bit sardonic.
My story is a good one being that I am the one who originally discovered that it is lyme clinically. I jumped for joy when he told me that I was positive for Lyme. But now, as I read more I quesion this. Is 1 band enough? Naturally Eliza test was neg.
Thank you both.
PS, my scare for MS is that I am a man and men are generally have more progressive cases of MS especially when they did not suffer w/ optic neuritis. I did not have optic neuritis. I have tons of support, but I just am not resting well. Then again, I did not rest well w/ probable MS dx. Perhaps I am down and out, desperate thinking that it is too good to be true. Now, about the met slowing down. This is very interesting. I come from a thin family. ALL ARE THIN. I was a thin boy. About 10 I started getting chubby, and more chubby in HS and now I am fat. I do not eat more than most young men. Could this be Lyme? I have narrowed down to my pathology to guessing that I was infected around age 8.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, Lost!
Have your doctor check thyroid levels.
MANY, including me!!! -- have had Lyme screw with their thyroid. Many are as a result hypothyroid. Some are borderline. A normal persons's TSH is somewhere between 1-2. If yours is over that, see if your doc will give you a trial of a thyroid supplement. He will of course check free T3/4 'cause he's a smart doc.
If you are this stressed out now, I greatly worry about you when you start your doxy. There's a reasonably good chance it's gonna HURT! You must be prepared for that eventuality, and be mentally prepared to pamper yourself and weather the storm, knowing you are killing spirochetes and not suffering an MS attack. Keep your doc informed but please don't give up on treatment because it gets rough in the beginning.
In fact, to a degree you should welcome it, weirdly -- it will confirm your Lyme (rather than MS).
Now, repeat after me: "CDC criteria are stupid. CDC criteria are stupid. My doctor knows a lot more about Lyme than me and would not jeopardize my health, so I'm going to trust him."
There. Don't you feel better?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
John, I can feel your anxiety and despair rising, to the point that I am affected. (I'm hormonal right now, and everything is affecting me. The other day I burst into tears when I started reading about the new movie about Flight 93.)
I have a bunch of suggestions for you. They all involve books, hah.
======= For your racing thoughts, anxiety, irritability, etc. "A Remarkable Medicine Has Been Overlooked," by Jack Dreyfus.
This is about low dose Dilantin. Used copies are available at Amazon for ridiculously cheap prices. You can google for info, but the reviews at Amazon will give you a good idea.
This med, in low doses, relieves many of the symptoms that Lymies have. I can't figure out why the LLMD's don't prescribe it.
========= "From Fatigued to Fantastic," by Dr. Jacob Teitelbaum, has excellant information.
He also has a website, with all the information for free. https://www.endfatigue.com/home.nsf (You need to check all the links to find what may help you.)
iHerb.com carries some of his supplements, at a reduced price.
There is also info in this book about combining rhodiola with another herb to assist weight loss. Can't remember which one, and I'm too tired to go upstairs and get the book.
=========
Okay, here's some info that's not a book.
Marnie Topic: This is what I would do. posted 26 June 2005
This thread is from before the change in servers, and some of the links may not work. Read all of it, it is valuable.
========
"Healing Lyme" by Stephen Buhner. Lots of good ideas, whether or not you take antibiotics.
=========
When I first started reading at LymeNet, I was appalled at the all the problems people were having with antibiotic treatment.
I started looking seriously at alternatives. I just wish I could get my brain in gear, there is so much information.
Later, Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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WildCondor
Unregistered
posted
Stay strong okay! Many of us are in a similar situation. The low carb, sugar free, yeast free diet is essential while on treatment as is exercise. Why do you only have one or 2 choices of meds? Doxy is hard to take in the summer because you cant go outside. Did you ask your doctor about something like Bicillin injections or something non sun-sensitizing so you can do treatment and still be outside..and not a Lyme vampire (as I was on Doxy in summer) Also, it doesnt matter what your western blot band is, Lyme disease is a clinical diagnosis. The CDC guidelines are flawed, so dont pay any attention to them. Read all the Lyme disease treatment guidelines from ILADS, posted below. They should answer your questions, and if you have more, email me again, anytime and I can help you as will many other nice folks on this board. We all have to stick together okay! You will be okay!
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posted
Once you get through all the phases of grief... Denial (this isn't happening to me!) Anger (why is this happening to me?) Bargaining (I promise I'll be a better person if...) Depression (I don't care anymore) Acceptance (I'm ready for whatever comes)
I think I am somewhere between depression and acceptance lately...(depression is sticky cause lyme causes it clinically)
When you are depressed it is impossible to look for solutions "HOW" to make it work, easier to focus on reasons "WHY" it won't work.
I know Dr. P. If he thinks you have lyme, I would trust him (even though you may have be let down by other docs before--he is a smart, studied researcher.
If dr. P wants to keep you on doxy then maybe you could get a stationary bike - when you feel well enough-- (that's what I use cause you can watch TV or read).
You need to ask him for a good sleep pill-I'm sure he is used to requests about this. The apnea will ease up as the weight falls.
If you feel too overwhelmed with all the @#$% we must endure to overcome this illness --herxing, pain, suffering etc...then please take my advice on this and get a therapist...
I found someone to help me through these tough months--you don't have to go this alone. If you read some of my past posts (several months ago) I was very depressed and ready to end it.
You are young and have a full life ahead of you.
BTW, the vast majority of people DO recover enough to live a full life--(they just don't know it when they feel so close to death).
We are all here for you--You are absolutely right about us americans wanting instant results-I had to confront this in myself.
Potential here for huge spiritual growth for us all.--Flowers can only bloom as fast as they can bloom...spirochetes can only die as fast as they can die...which isn't all that fast but they do die.
Once you get on your own side, your body and the universe will follow.. PM me if you need a listening ear...
-------------------- We are spiritual beings on a human journey...
Hang in there. I am on doxy too and it sucks. My doc is going to change me at next visit because I am having so much trouble with the sun.
As far as diet goes, you may want to try the zone diet. It is not low carb but it works well for me, it is balanced ratios of carbs and not the sugary ones, just good eating.
You can even eat balanced at McDonalds, like the grilled chicken or a grilled salad.( I have to be able to eat conveniently because I get too tired to cook.
Also if you can't exercise traditionally, you can use the far infrared sauna to help burn calories.
I also agree with the suggestions that you get a good sleeping pill and have the thyroid checked out.
Good luck, we are all going through this too so don't hesitate to ask for help!!
-------------------- Dani Posts: 102 | From Where there is no lyme | Registered: Jan 2006
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LostCityAgent
Unregistered
posted
As always. I am edified by you folks. Tremendous individuals. I will take all of this advice and run with it.
Thnx, Jmcc. If there is anything that I can do, contact me at any time.
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