posted
A very good friend of mine on LymeNet suggested I post this to see if last Friday was possibly my "first Herx". First of all, I forgot what a Herx is.
I was on low dose Doxy for 4 weeks. Last week, I believe Tuesday p.m. was my last dose. Friday a.m. I was shaking, pulse was 120, I took my BP and was 100/90 in left arm twice.
During my taking the abx. I became worse, dizzy, losing my balance, cognetive probs. angry, aggrivated,etc.
Friday when I tried to walk it felt like the gravity was pulling me to the left. As hard as I tried to walk straight, I walked to the left.
I had someone coming to my house for an appointment and she immediately said I needed to go to the hospital. She called a friend of hers that was a nurse and I talked to her on the phone and she ask if I always slurred my words. I said "no".
My appointment person also said I was slurring my words. FINALLY, I said ok and they called 911. I was an EMT for 6 years and should have known better than to wait, but I did.
CT came back normal. ER Dr. said "This doesn't have anything to do with my Lyme". I know that it has everything to do with my Lyme.
The only thing he found wrong was my Lymphocytes % was very high??????????????? Wrote me a script for Valium which I shredded when I got home.
Here I am...waiting for the Infectious Disease Dr. to call me back (From LAST week). Depressed. I do not want to go on. I cannot handle the stress in my life. I have no will to keep fighting this and I have only just begun.
I'm lost and feel like I am just going to have to die from this because no one will help me. (Your symptoms are not from your Lyme). YES THEY ARE!!!
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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posted
First of all, why on earth are you going to an Infectious Disease Doc? Don't you know the story with that? Why aren't you working with an llmd?
Secondly, most ER docs are not lyme literate and fall in line with the IDSA guidelines.
Thirdly, what was the dose of Doxy? Anything lower than 400 mg is not enough AND most llmds do not believe in mono therapy.
What is a herx? When lyme bacteria are killed they release toxins.This toxin release causes symptoms to surge. I'm not sure if what you experienced was a herx. The low dose doxy may have only made the lyme go into cyst form--this is a strategy to survive a hostile environment. As soon as you stopped the abx, the bugs may have reverted back into spirochetes causing more symptoms.
I'm concerned for you. Please start researching and reading so you can better navigate the treacherous terrain we lymies are in. Your first next step should be finding an llmd. Please.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
Please dont go to an Infectious disease doc. Go to "Seeking a Doc" on this forum.
Many of us here have had horrible experiences with ID docs. They dont fully understand Lyme disease. I had to learn that the hard way this week.
I fought and fought with my ID doc, and she was the IDSA guidelines! (These guidelines can save your life).
Just listen to us here on this site. It will save you LOTS of money and hardship in the long run.
Promise!
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm about the most well-mannered person any doctor could hope to have. I don't "do" drama. I don't yell. Usually, I don't cry but lyme has brought me to my knees, begging for help. I have been turned away so many times.
I was fainting, having seizures, slurred speech, walking with sudden pulls to one side or the other and I've been kicked out of several offices of ID doctors and top neurologists - and even E.R.s before I learned there is no help there.
We have to weather some very serious symptoms on our own but you really need a LLMD to guide your treatment.
There are also many self-care "rules" and support supplements that can help ease symptoms along the way.
MAGNESIUM is the number one help.
First, figure out some way to see a LLMD. Then, get on magnesium, fish oil and turmeric. These do not fight infection but can help with symptoms.
Keep your distance from friends who don't know about lyme as their fear and drama can get you into some jams with idiot doctors. We do have to just weather this as best we can, resting intensely and pulling back from activities.
Be sure to go back over your past threads for the links posted there. You can search your posting history by clinking onto your name.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes I have read and read and read and read.
I was hopefully going to see Dr. C in Missouri. I only Medicare and he is EXTREMELY expensive.
I have read ALL about the ID docs and all the horror stories.
The Dr. that dx me put me on 100mg of Doxy 2 x day which yes I know is NOTHING.
I know, I know. I know so much now I have made myself absolutely insane.
I cannot find anyone that will help me. If they can help me I cannot afford it. This appears to be a lose, lose situation for me.
I have daily battles I live every single day in my home since I got divorced a year ago June. I am now a single Mom with a 14 year old that has a Dad that doesn't give a damn about anyone but himself and his girlfriend. He is absolutely no support whatsoever.
I can hardly make it through a day at a time. I just want to jump ship and give up.
Lyme Disease has probably had a hold of my body for at least 15 years. I have been dx. with just about everything you can imagine.
An LLMD is just not an option for me. This is going to kill me. I honestly feel that way now.
I will die from Lyme!
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You do not have to die from lyme. Yes, people do but you don't have to. There are many ways to make this work. It just may take a while to find what can work for you.
Are you taking MAGNESIUM right now? Magnesium can help in so many ways while this can be figured out.
Fish oil and turmeric, too, are simply invaluable support measures. These will help you manage. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
To all those who think that all we have to do is see an LLMD, let me tell you how difficult that can be for some of us.
Firstly, many parts of the country don't have LLMDs so we resort to the next thing which is Infectious Disease doctors...
Secondly, if we do have to travel to see someone, it is extremely costly. Many of us just don't have that kind of money. The one I was referred to is in Seattle and charges $600/hr. but he's supposed to be great!! I guess if you're rich you can be cured! And in addition you have to commit to another 3 sessions minimum. Now that does not include the cost of getting there, hotel, etc.. and buying perscriptions.
Now I can see why people self medicate, because it truly is a rich man's disease!
If you cannot afford Dr. C., who I hear is fabulous, then fly to someone who will take medicare. I know my doctor is Medicare approved. Unfortunately, she does not take my insurance.
You have to get a good LLMD to get you started, and know what to treat first. Just make the appointment, and find a way to make the payments. I'm sure Dr. C will work with you, and your situation.
If it costs $600 to start to get your life back, then so be it...
Posts: 964 | From san diego | Registered: Oct 2009
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posted
I'm not rich. My llmd charges $350 for an hour. I have to get someone to drive me there and I don't have my own home. All my money, what's left of it, goes into treatment and now I'm looking at having to get IVIG=$10,000 per infusion. I have to ask people for help. And I'm so miserable, there're times I can hardly stand it.
I don't know what the answer is for you. Maybe you have to pack up and try to find someone to stay with, somewhere where you can get some appropriate treatment. People jump on the ID doc thing because it's worse than giving up. It damages your psyche, costs money, and does no physical good.
I'm sorry your situation is so dire.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
I have the SAME symptom of being pushed to the left when I walk. It is the worst!! I have had this for over a year!!! It is now almost gone after 1 month on doxy, zith, flagyl and then another on doxy and septra. I was taken off abx for about 3 weeks to detox adn then I will start again. I feel it coming back a bit, but I have days where i feel normal. Still losing balance at night though.
Anyway, I seem to have many similar symptoms and feel the same way as you - way worse on the antibiotics.
You need to find an excellent doctor. We are having to travel 5 hours and spend tons of $$ we don't have. I put it on my card for now and hope to pay it off when I am well. You have to do anything you can to get treated and then worry about paying for it later.
Sorry, no real words of comfort for you, but I knw this awful, overwhelming feeling of doom. You will get better!
Posts: 618 | From NC | Registered: Oct 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I don't have the money to spend on an LLMD but I make it work...I don't have a choice. There are some cheaper LLMDs with great reviews who will work with you. You must call around and see what you can find out.
I don't have credit cards or any type of credit. Just a bank card that is real money we make when we work.
I don't like to throw away $$$ but I don't have a choice if I want to get well. I need to get well, if not for myself for my kids.
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