posted
Two and a half weeks ago when i got tested for lyme and started abx i had only ONE symptom. A cold sensation in my arms. That's it. i was able to work, play sports etc.
Now, two and half weeks later i'm spending my 7th consecutive day in bed. I have:
debilitating fatigue bad headaches weakness in my entire body Muscle Twitching Sometimes chills with no fever Cold sensation in arms still comes and goes.
Could it be i have something else? Or maybe a co-infection?
This just doesn't make sense to me.
P.S Sorry if i've done nothing but ask questions and whine since i signed up on this forum. Lyme has been tough for me both physically and mentally .. since i'ts the first time i've ever really been "sick'. I need all the support i can get. Thx.
[ 05-23-2010, 10:29 AM: Message edited by: the3030club ]
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
There is a lot of conflicting information out there but I have read that the spirochete bacteria can go into a kind of stable dormant form and do not cause symptoms and that people can live for years with no symptoms and that the ABX kind of stirs them up and makes them more active and of course as it kills them the dead bodies and the toxins from such cause herx type reactions.
Just one theory that I have read.
Posts: 24 | From Cincinnati OH | Registered: Mar 2010
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Remember to Smile
Unregistered
posted
Yes, it makes sense. Keep whining here. We learn from each other. Co-infections are VERY common.
You MUST get under the care of a LLMD ASAP if you aren't already.
Hadn't see your name before, so just in case you haven't already, print out Burrascano's Treatment Guidelines, the free 37-pg Oct 2008 monograph from the ILADS website. Read as you can, highlighting and bookmarking pages to share with your caregivers at home and your LLMD.
posted
I am in the care of a good LLMD. I've been on Abx for 18 days. I've progressively gotten worse since day 1.
I had lyme last summer and was symptom free within 3 days of abx.
Each day i'm losing hope, and wondering if i have something other than lyme. I just have no idea what it could be.
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posted
I am in the care of a good LLMD. I've been on Abx for 18 days. I've progressively gotten worse since day 1.
I had lyme last summer and was symptom free within 3 days of abx.
Each day i'm losing hope, and wondering if i have something other than lyme. I just have no idea what it could be.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme is one of the most toxic infections know to man. Last year, your treatment was too short and now lyme is in a different state, more severe. Yes, sadly, lyme patients do usually feel just awful during treatment. But there are things that can help. Many things.
There are many links explaining this over at another thread of yours. Coinfections are discussed; Herx is defined there, too. You must not yet have seen those replies for you.
Somehow, the severity of lyme must not have been fully explained to you. Somehow, self-care basics were missed in your instructional sessions with your LLMD. I'm sorry you got to this point and are surprised.
Bottom line: treatment can take a couple of years now that it's become chronic. Still, there are some things that can help along the way. Be sure to read through the very detailed replies - for what can help - waiting for you here:
posted
Thanks Keebler. I did read the other stuff. It was very helpful. I guess i can't help but be on edge.
All of my symptoms are very non-specific, so it constantly has me second guessing. I never found a tick, no rash, igm positive, but igg negative.
I'm actually the most scared that it's not lyme and i'm just letting something else have it's way.
I haven't had a CBC done since i've felt sick, so i don't even know what's going on with my blood levels.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Western Blot, IgM positive, says it all, together with your symptoms -- pointing to chronic active (disseminated) lyme. Sorry.
You wonder if you could have something worse than lyme. Hey, there are very few things worse than advanced lyme. Very few. Other than other infections along with it.
Your symptoms are on the lyme lists, for sure. Although, as you say they are non-specific. However, it's more the intensity and the fact that antibioitics have produced a herx reaction. A herx is key to lyme.
Absence of fever is also common to lyme. Lyme is a stealth infection. It works differently than most others. Also consider that the antibiotics (abx) may be reducing a fever.
Still, ask your LLMD about coinfections. He may have already assessed you during your appointment but discuss it with him.
* Doxy. From a past post, I see that you've been on doxy just over 3 weeks - *** so be sure to avoid any sun on your skin. ***
- You may be taking just doxy now but did LLMD say there would be a change of meds later on? If so, he may already be planning to address possible coinfections when your body is ready. It can be a process of addressing layers.
* Be sure your supplements are in order.
* Do you avoid - totally - aspartame and MSG (Google for all their names)?
A CBC will show nothing regarding serious stealth infections such as lyme. Stealth means hidden, sneaky, not detectable in routine tests.
Lyme is a stealth infection. You had lyme last year. Undertreated. You've got the IgM positive this year with classic lyme symptoms so it sure sounds like your LLMD made the right call.
A herx will make this feel worse. But, after you read through the links provided for you at that other site, this will all make sense - and you'll know what you can do to help fell somewhat better s you go through treatment.
The education required of lyme patients is a huge load but it's the only way this will make sense. Still, it's important to create a healing atmosphere as best you can as your body really needs that.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My MD put me on 200 mg (100mg bid) of doxy.
After 2 weeks i decided to go see an LLMD. The one i saw is VERY prominent, he not only treats lyme, but it is his main area of expertise. ILADS member.
He gave me the option of either 400mg of doxy or 3000mg of amoxy. I chose the amoxy because it's easier on my system.
He did not test me of any co-infections, but i'm sure it's a plan b if needed.
That was last Tuesday. Right now i take a multivitamin and an additional magnesium supplement.
I stay away from sugar with the exception of cough drops. I've never had artificial sweeteners.
I'm also 27, male, softball player, cyclist, athletic.
Aside from lyme a cat allergy is my biggest ailment.
I haven't been able to stand for more than 10 minutes in a WEEK.
So you can understand why i'm so thrown by this.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme can be fatal. You need to know that.
I understand your surprise at the severity of this but, really, lyme can be fatal. You have a very serious infection and it will take very serious effort to treat it. You are on the right path with a good LLMD. But it's not going to be smooth sailing. There will be ups and downs and times you don't know which way is up.
With all empathy and understand, I'm trying to cut through the chase. I remember being surprised over and over and so mad that, years after the fact, I'd learn just how very dangerous of place I'd been in - for a long time before I knew.
I know that according to grief therapy you need time. First, it is important for someone to actually say "Lyme can be fatal. You need to take really good care of yourself."
Then, backing up - address the shock factor. Yes, it's a shock. After over two decades of being very ill, I'm still shocked by the effects of lyme + co.
I'm shocked that it's not common knowledge, even among doctors. I'm shocked that my body took such a hit but actually, even with barely any medical care, I managed to crawl along. Better in some ways but I did nearly die a couple times. I still have miles to go.
So, I'm trying to save you time. I can't save you heartache but I can save you time by presenting to you information materials that explain just how very dangerous this is. But I never do that without also arming you with things that help.
You need to be on liver support and on adrenal support. Period. It's all in the other thread.
As you are still reacting to the super hot bath, you are likely feeling more shock and fear and I am truly very sorry for that.
If you can, ask your LLMD about a LL counselor or LL therapist with whom you can discuss loss and grief issues. It takes a while to accept shocking news. I know I can't speed that up and am concerned that there is so much being tossed at you at once.
But when someone is in triage, you've got to move fast and face the facts. Yes, this is very bad. Yes, it is life-changing for now. Still, with specific action, you have a good chance at a full life.
You may loose out on softball and sports this summer but you can participate in some fashion to still feel friendship and connection. It's just going to be very different. And, after you've reached remission in year or two or three, you may be so much better that this will be just a blip on the screen.
Once your body has settled down from the reaction to the hot bath, you will still be able to enjoy many things along the way. Really. It may be a rough ride but you can still enjoy many things - just in different ways.
I know you are a guy. Still, if you need to, cry. Let it out if you feel the need. There have been times that I really held back a crying event for years as I was afraid if I started to cry I would never be able to stop. There is loss. There is grief. You will have to face the person you will be with some things out of your life, even if temporarily. That is very unsettling.
So, whether by crying, journaling, "moving" anger or fear with gentle exercise (like Tai Chi or yoga) . . . or other forms of expression . . . do express yourself. You may find some good stuff through that.
Give yourself all the respect and appreciation possible right now. You deserve it. You've been handed a very rough "assignment" - so take the best care as you can to nurture yourself in all ways. This can get better. -
[ 05-23-2010, 04:52 PM: Message edited by: Keebler ]
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I don't really have alot of advice to give but just know that you are not alone.
This illness is a disaster. I'm sorry you are suffering.
Hang in there! At least you seem to have a competent doctor. That's 1/2 the battle...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Lyme is bad stuff.. I wouldn't worry that it's something else .. really. You have a positive test, which is more than I had!
Hang in there.. we'll help you!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymeboy
Unregistered
posted
Im there with you....Not too much older than you, been a madman my whole life. I am now ruined to a degree, and In a state of shock myself. Its good to hear you have the help of a good LLMD. From what I understand, a lot of people get better. Maybe even most who follow the Protocol. The trick is getting a Dr who does, something I will find out for myself tomorrow, if not, then on to the next one! Good luck, keep us all updated. Don't give up hope. I am trying hard not to myself!
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Remember to Smile
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posted
quote:Originally posted by the3030club: Right now i take a multivitamin and an additional magnesium supplement. I stay away from sugar with the exception of cough drops. I've never had artificial sweeteners. I'm also 27, male, softball player, cyclist, athletic. Aside from lyme a cat allergy is my biggest ailment. I haven't been able to stand for more than 10 minutes in a WEEK. So you can understand why i'm so thrown by this.
Now we're getting the picture. Keebler responded well.
Maybe your current age & gender could begin to explain why you're thrown by this NOW, after being in tx with a great ILADS M.D.
If you don't wish to follow full tx protocol, plz get the heck out of his office and make room for someone who really wants to heal. My MOTHER needs your appointment!
Although you've been fit before, you may not be able to quickly lick Lyme and move on. Last summer you may not have been treated long enough.
Don't underestimate the potential of the LD complex to RUIN YOUR LIFE long term if you don't get into COMPLETE COMPLIANCE asap!
Dr. Burrascano didn't produce a 16th Edition so patients could blow off Pages 27 on! Get kefir, Co-Q10, Alpha Lipoic Acid, etc.
"Staying away from sugar" is NOT the same as total compliance to a Candida control diet! If you have one hard roll or crumb bun, you're ensuring your blood can remain a potential source for a mosquito to pick up LD and spread it to friends & family!
I was very active, healthy, played numerous sports, earned a varsity letter... Swam, ran, played softball, yada yada yada. I could lift & carry (for a few feet!) any guy weighing less than 180 lbs. I could carry and toss up to 65 lbs.
So?
Yesterday i could not hold a garden tool in either hand. Just too heavy to simply hold it; not even work. Opening my fridge or freezer has been a struggle 'cause the vacuum seal is so good. Opening a microwave HURTS! I am sometimes breathless and winded from getting my mail.
I'm deconditioned now and it's disturbing. I can't walk, bike or drive myself to a softball game, much less sit on a bleacher or bat a ball.
Beyond strength concerns, do you like to have conversations with other humans? Lyme & Co can infest your brain to the point where you can't find words or make sentences. Think Alzheimer's while you can still think.
I know a guy in his early 30s who's relapsed twice because he chose to have a couple beers or some coffee. Wake up and get healthy while it's still possible for you.
Or just cancel your next appt with the prominent LLMD and invite your softball buddies over for beer.
Yup, it makes sense that you're getting worse.
It just doesn't make sense that hundreds of Lyme sufferers are still waiting to get in with a LLMD.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm pretty sure you mean you used to be in all those sports. Aerobic exercise is not allowed until infection is well under control. (in Dr. B's self-care links from your hot bath thread).
I did not see that you mentioned drinking so I assume that, wisely, you don't even touch alcohol. If so, that will sink your plans for a future and lead to treatment failure - just so you've been exposed to that piece of information. It's really important to your safety and success.
Well, I've learned my lesson. I assumed that, since you sounded so shocked and new to this, that you had simply not been given the guidelines or introductory materials - so I knocked myself out these past two days to gather all I could to offer a crash course. I gave your posts so much of my time.
When "Remember to Smile" just posted, I started to say "wait - he's just now learning" but I did something I should have done before even answering your first post: search posting history.
I see, now, that you were given wonderful intro. materials and links - BettyG's wonderful list - late last summer.
If baffles me, then, that your symptoms now come as a surprise to you. Had you read the materials last summer, it would have been clear that this all just goes with advanced lyme.
By the way, do check the label on your cough drops. Many have aspartame added. Ricola may be a good choice in emergencies for cough but there is this fabulous licorice tablet that works better for me and there's no sugar: CankerMelts - just Google it.
Good luck. Please read, read, read. Learn and take care while you still have a chance.
================
Detailed advice and links that were posted here for you last summer are still excellent. i hope you can finally read these as it will help all this make sense:
Topic: Recently Diagnosed with Lyme .. Suggestions?
16 August, 2009
===============
You said in your first post above: " . . . This just doesn't make sense to me. . . ."
You might also go back over other past threads of yours and read some of the replies. You got some very good replies filled with great explanations and suggestions. They are still valid.
When you read these, you will see that your symptoms make perfect sense in how lyme progresses - and what can help.
To search your posting history, just click onto your web name.
Please save links to your personal research/study page so that you can easily access them right from your computer at the touch of a button. -
[ 05-24-2010, 12:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I think Lyme is more serious than most understand.
I surely didn't know HOW serious it really was until I started researching it even though my friend of almost 20 years has it...bad.
Keebler always has great information, very informative and Keebler is very intelligent. Read and understand what is posted for you. If you don't understand, ask.
I'm having serious issues comprehending lately, posts that are too long I just skip most times because by the end I have no idea what I was reading to begin with. But I ask for clarification. Even if it makes me look stupid, or even if I need it broken down like I am a child.
It's hard to take in all this info, and there is a lot. I have more favorites link dedicated to lyme and co-infections than anything else and I'm a student with lots of favorites for paper writing, future life course plans, and all kinds of things.
If I realize I can't read and comprehend what is being said at the moment I'll either save it in favorites or copy and paste it in a word doc. If I don't write down to check it later though I forget and end up stumbling upon it days or even weeks later.
I'm am extremely unhealthy person. I hate drinking water, but I am forcing myself to. I use to go to bed closer to 11, now if I'm not out by 10 I feel it bad the next day. I do get up at 5 every morning though, to try to get a handle on the pain before my day really begins.
Lyme will change your life, at least during treatment. And probably afterwards too. Everytime I am working outside, mainly this last week, and we had a house SURROUNDED by trees and long grass. All week I kept saying, watch out for ticks, check for ticks, ticks are bad. Look at yourself at the end of the day. Before? Ticks never would have crossed my mind in that setting.
My daughter, if she goes out to play, need to check for ticks. I'm so over anal about ticks now, but I know the damage that can be done.
Where I work there is often fleas in the units. I will not even ENTER a unit with fleas now. I tell them nope, don't want it, give it to someone else. If there is even a possibility lyme is transmitted by fleas I don't want to chance it.
Lyme is serious and can be fatal. Lyme effects so many different organs, so many different systems.
Watch Under Our Skin Documentary. Can be purchased from their webpage for $30 or so. It is a good documentary, too short in my opinion, I'm waiting for an extension to it. That will give you an idea of how bad lyme can be.
Not sure what other advice has been given to you at this point, I see you have 37 posts already and I saw Keebler referencing old posts.
Take notes, even via a word doc on your comp. Take in and absorb what is being said you to. You might not be THAT sick right now but you never know.
I am more sick now, after being treated for 2 months, then I was in the beginning. A progressively getting worse sick, not a herx sick I don't think. It can get bad, REALLY bad.
posted
I think you guys are getting the wrong idea.
I've read and understand all of this. I can't tell you how much i appreciate the information.
What i do not appreciate is when it's suggested that i don't care or i'm being reckless/ignoring my doctor. What would ever make you think that?
I'm worried, and looking for support ... if i'm asking redundant questions it's because hearing back from someone makes me feel better about what i'm dealing with. Isn't that what a forum is for? Otherwise i'd just buy a book.
I know my symptoms are typical of lyme, but they're not specific to lyme. I've spend the last 10 days in bed .. it leaves me a lot of time to worry about other possibilities aside from lyme.
While I AM almost certain it's a relapse/reinfection my health is important to me, so it'd be foolish to not consider other ailments, not like i have anything better to do right now.
My LLMD was pres. of ILADS, and i'm following everything he's told me. I eat healthy, take suppliments, have not touched alcohol. The mention of sports was to show that i was athletic and in good shape BEFORE i started feeling sick. If i could go to a softball game i wouldn't be nearly as concerned as i am now.
"Or just cancel your next appt with the prominent LLMD and invite your softball buddies over for beer.
Yup, it makes sense that you're getting worse.
It just doesn't make sense that hundreds of Lyme sufferers are still waiting to get in with a LLMD."
Are you kidding me? I thought this was supposed to be a supportive forum? What kind of assumptions are you making. I'm doing EVERYTHING I CAN to get better. I think i'm owed an apology.
I'm very sorry you're having a problem getting an appt. with a doctor. Maybe it's where i live, but i got in same day with a very good doc. If you're near westchester county NY i can give you his contact information. Just as soon as you apologize for basically telling me i deserve to get sick.
Posts: 339 | From Outer Space | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't speak to the poster for the quotes you highlighted but wanted to say that, if, when reading my last post you just give it a regular tone of voice, a very tired tone but just regular, it may not read as harsh as if read with a different tone.
I'm just worn out and was surprised to find that it's the second time around and that others had a lot of stuff that did make sense to answer your questions. I do realize that I probably need to stop posting as I'm just running on empty myself and that can make stuff come out the wrong way.
As to when one seeks answers or support, much of that seems to be a matter of tone and shrugged shoulders. Perhaps I missed the shrugged shoulders with the "does this make sense?" and I took it very literally and went back to square one, Lyme 101.
My mistake in assuming you were brand new. I should have taken note of the number of your posts to save myself time. (very normal voice here so there is nothing to read into that).
I can't defend jumping to conclusions, however, including some of the safety details about drinking, etc. were in case you'd not read that. I often include that for new posters, just to be sure they know.
I'm sorry that your asking for support was confused with asking for medical facts. Bottom line is that, yes, all that you are going through can be from lyme. AND, as mentioned, other coinfections could be contributing but lyme, itself, can certainly do that.
You've got an excellent LLMD so I'm sure your clinical evaluations include consideration of coinfections. Still, you can ask his thoughts as you proceed.
You might also ask about other chronic stealth infections such as mycoplasma, HHV-6 and Cpn. Maybe ask about XMRV. But your IgM was positive for Borrelia b. and that says a lot right there. It must be treated right, this time around, for long enough.
It's exceedingly shocking to be in the position that you find yourself. And, yet, yes . . . that is how lyme works.
Again, so very sorry you are experiencing this. It will take time but you do have a chance. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to chronic lyme, I'm sure your LLMD has considered these but it's good to ask:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When spirochetes get irritated they emit toxins. And that irritation to them can be nearly anything: stress, Rx, etc. That is why lyme patients feel so awful so much of the time. Even a little vibration will irritate spirochetes. Too much heat, too much movement.
Still the herxheimer reaction - from "chemical assault" (from Rx or even if from a strong herb) - is very real.
Certain supplements to help reduce elevated cytokines help. Liver support helps. -----------------------------
The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.
It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.
Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease. The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]
The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]
Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.
=======================
A "herx" can also be connected to liver stress, in general. If the liver is overwhelmed, and then asked to outperform - handling too many chemicals or faced with too much exercise - it can't process out the toxins and there is a backwash, so to speak. Technically, that may not be called a herx (or it may be) but it's a toxic reaction, all the same.
More specifically, a "herx" can also be connected to porphyria, just one kind of liver stress resulting in a toxic level of elevated porphyrins. There are at least eleven kinds. More about how at least one kind is seen frequently with lyme patients: -----------------------------------
SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)
=======================
3/4 of the way down page one, there are lots of LIVER LINKS - not just supplement lists but real education materials so we can learn how the liver works, etc.:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
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