Topic: What Attacks Does This Sound Like Lyme or What?
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Not sure if this is lyme related or what is going on with me. Long story short, maybe.
Got up early this morning put dinner on in the pot and there were a few yard sales in the neighbor hood. Even though my legs were achy thought I would give it a try and go to one or two.
By the third one, I knew I was sinking so started home. The weirdest feeling came over me, body aches, feeling like I wanted to cry, nausea and so weak just felt like the life was being sucked out of me and the urge to get to the bathroom.
Got home crying and if I hadn't hit the bed I think I would have passed out. B/P and B/S all okay. Took a xanax , a couple of bufferin and some nasal spray thinking maybe an allergy reaction.
Have had these spells on and off for awhile, not sure if its lyme or something else. I was so happy to be feeling somewhat normal but it never last . Not sure if I am over doing or what. Seems these spells are hitting about once a week and last for 24 hrs or longer.
My husband has not been well and I have been trying to go with him to the doctors, for test etc. He started getting sick in July and lots of test and doctors. Today I was to go with him for a MRI but couldn't make it.
No new meds , nothing different just when I think I am on the mend something always pops up.
Not seeing a LLMD anymore just can't travel or afford one. My PA tries to help but admits she is clueless.
Thanks wondering if anyone can relate.
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry you are going through this. Sorry your PA is "clueless" - and should not be (even if they cannot offer treatment for lyme, they should know that this is very typical for those with lyme.
What you describe has been very common for me, for many others whom I've read about, too.
You have described such experiences from many shopping trips to the supermarket, etc. I know it's sad when, even just outdoor shopping can do you in -- but it really makes perfect sense with the way lyme can clobber all systems.
ADRENAL SUPPORT - and careful "energy output" scheduling patterns can help.
- explores the neuro-psychiatric and neuro-psychological ramifications. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You've written often of not being able to obtain a LLMD or ever really having addressed this head on with a LLMD - and problems tolerating even the sporadic attempts by various MDs with some antibiotics.
There are other ways to address this if a LLMD &/or treatment protocol are out of reach, for whatever reasons.
LL Naturopathic links here with articles and books that can empower us with other ways to approach this. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help better tolerate ANY treatment choices:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thank you, I know me not getting well is partly my fault. I did see a LLMD but I guess maybe the wrong one.
I have checked into the RIFE Machine. I just put a call into a doctor and waiting on a return call for an appointment. I owe this to myself and my family no matter what I have to do , I have reached the point of no return.. Don't care if it kills me I can't go on , riding this roller coaster.
Tks for the reading material but honestly my brain doesn't process this enough for me to help myself alone.
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tone in typed text can go all wrong. Please, do not read my words with unintended intent. The tone of voice makes all the difference and that gets lost. Sorry if you "heard" that differently than being understanding. I apologize if the phrasing came out wrong.
No, not your fault,
just understanding the situation (and to help others who post who need the background) that since you have not been able to obtain a LLMD or tolerate even the abx that some other doctors can offer - that there may be another way.
MANY can't access LLMDs.
Recalling postings of issues you had tolerating treatments and how they were not fully combined protocols . . . it was always unclear if the doctor you saw was really a LL, and ILADS aware as I recall the treatment you described was not according to ILADS in the depth or duration - or with reconfiguring combinations for your ease.
I have never been able to work with a LLMD or LL ND beyond a couple of consults. Money, politics, logistics, etc. I did have access for a while to on-going combined abx without consistent LL guidance but could not tolerate the Rx protocol without that guidance.
However, the tendency, then, can be to believe the other doctors we come into contact with who "don't have a clue" and then we are wondering what is going on when, this is just how lyme works.
For years, I would still try to get help from "regular" doctors and it was always useless. They just were not equipped. It was running around in the same circles. I kept going and they kept being inept.
In my inept way, I am trying to help you avoid that spiral.
You may still be able to find an ILADS educated LLMD - or LL ND. Someone who really has complete knowledge and can offer you an individualized and complete approach for as long as it takes. That is not what you've been offered yet. And you should. But, if it's not possible . . . .
Finally, I just had to learn that I was on my own and with all the TBD that were never addressed as should have been, I could not expect them to know. It was up to me. Scary, for sure.
It's a hard lesson and one that I keep learning, that a body with lyme is just going to react differently even when I get a twinge of "maybe close to normal for a minute" - the bubble usually pops and peace is hard to negotiate, over and over.
But, when some kind understanding about this is on board, at least then I know why it happens.
No, not your fault that this is just the pattern of lyme.
Can you find a friend who might be able to help you figure out what other ways might help?
You say that you " I just put a call into a doctor and waiting on a return call for an appointment." (end quote)
But if that doctor is not LL, they can't fully help. It's true that not all symptoms are lyme but for someone with untreated (to the degree required) chronic lyme &/or other TBD, so many are related - and for those that are not, treatments for those often require special approaches.
The lyme support group nearest to you may have names of doctors who at least have some kind of clue - to help make sure at least other things are under control (with some understanding of lyme and the Rx sensitivities involved).
Asking the same doctors the same questions will not bring any new results. I know it's hard to find well enough educated doctors. I hope that someone in the support group might help out in some regard - to be able to sift out anything that may be other than lyme -- but not dismiss you.
Maybe there is a LLMD new to your area?
Might someone in the support group help you consider a different protocol that you could do one your own?
Often, talking with someone who has experience with rife, Zhang or Buhner's suggestions can make a huge difference.
Somehow, there is a way. I am far from well, still so much better in many ways. It can be trial and error to see what can help.
To try to simplify. any approach must contain, at the very least. When the anti-infective treatment part is missing for whatever reason, the liver & adrenal support are still vital to continue, on-going:
Liver support
Adrenal support
Some kind of specific anti-infective measures, combination / rotation -
[ 10-04-2013, 05:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Keebler, thank you for all your help, please don't think you need to apologize I appreciate all your help and would never ever think you intended anything but help.
I am trying to read and process all the info slowly.
You are so correct about doctors, but at my age (71) I need a MD to keep ck on other things. I think..
Is there need to be retested for Lyme? One doc told me once positive always positive????
Posts: 1058 | From VA | Registered: Oct 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Short and sweet....check out the PARASITE WARRIORS SUPPORT THREAD and the symptom list at Humaworm. Parasite infections such as filarial worms, roundworms, threadworms, liver flukes etc have been the missing link for many.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, You do not need another test for lyme. It's never been treated adequately, you have not yet achieved remission. There is no point of another test.
However, all the things that go along with lyme should also be addressed when lyme is addressed again. As Gael adds, parasites are an important part and - often - if that is done first, treatment for lyme can be much easier. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Yes, I have had this exact same attack! That's exactly what I called it. An attack!
I had just added Valtrex to my protocol, but it was giving me strong Babesia-like herxes. So I don't know whether it was Babs or viral or what.
We were at the movies, and I let myself eat some (yummy!) inflammatory junk food. I had to leave the theatre and run to the bathroom. Just as you describe, with sweating.
It passed quickly and I was fine. It only happened that one time.
So, yes to Lyme attack, but I can't say whether it was a specific pathogen, weird herx, or rush of inflammatory cytokines.
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thank each of you for your help. Feeling better today and have done laundry and house cleaning. What a strange illness.. I probably will pay for doing today as my insides are in a jerk, weak muscles
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Muscles "in a jerk" -- be sure magnesium is on board, 3 x day.
Water? While these "attacks" (sometimes I call them "boomerangs") can be helped with rest, adrenal support and time . . . be sure to remember WATER.
By the time we feel effects of being dehydrated, it can be too late and we get hit, taking longer to come back. Be sure to stay hydrated all along the way, every day.
Sometimes, even a slight dehydration can clobber us and leave us in a bad shape. Anything you feel a little off, drink some water.
Glad laundry and cleaning already done. Concerned that you are feeling weaker than your usual, so please take it easy today. Pamper yourself.
Next time, though, listen to the "attack message" to "stop, drop, and rest" -- it is usually best to lie low the day(s) after being "boomeranged" - if a surge of energy hits and you think you can do this or that, it's not always an "honest" energy account and that can fool us.
Sardines also really help me bounce back a bit after such "events" -- just find the most nutrition foods, maybe some green tea so that your body can get the fuel to come back to at least the "adjusted normal" -- and enjoy autumn. -
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