Hello am new here . I have what i think is lyme disease i was bitten about 18yrs ago had the usual syptoms ,dizziness, painful muscles,twitching , pain , tachycardia with doing the slightest thing etc etc the last 7yrs i have been bedbound/housebound yet my dr seems to think i have me/cfs and all i need is cbt and some excercise i have tried telling them i am not deconditioned . i did have a private test done which was positive and all my dr said was well we did 2 tests they are negative so you do not have lyme disease. what do others think i would be very grateful for any replies .
Posted by Keebler (Member # 12673) on :
- First,
Let's address that ignorant notion that simply more exercise will cure anyone who is diagnosed with ME (CFS).
ME / CFS is very often lyme & or other chronic stealth infections. With any infection, aerobic exercise can cause severe damage. Safe exercise in Cardiac links below.
But, first, the key points to keep you from trying hard exercise that could cause damage during infection.
See the links here from the Nightingale Foundation in Canada about what happens to the brain of someone with ME / CFS after aerobics and see the link about the damage the heart can suffer from aerobics during an infection.
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Safe Exercise Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
[ 05-13-2013, 07:22 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Gizmo49,
I have to separate out your post to really read it. Many here have vision issues and finished paragraphs no more than 3-4 lines work best. That's about 5-6 lines as you compose - maximum.
New thoughts, key points or questions also best to have their own paragraph. Other than vision, one major thought per paragraph is about all anyone can track. This way, you'll get better replies when you post.
Here's your post with some "breathing room for the eyes": -------------------------------------------------
Gizmo49 writes:
Hello am new here . I have what i think is lyme disease
* i was bitten about 18yrs ago had the usual syptoms ,
* dizziness, painful muscles,twitching , pain , tachycardia with doing the slightest thing etc etc
* the last 7yrs i have been bedbound/housebound yet
my dr seems to think i have me/cfs and all i need is cbt and some excercise i have tried telling them i am not deconditioned . i did have
* a private test done which was positive and all my dr said was well we did 2 tests they are negative so you do not have lyme disease.
what do others think i would be very grateful for any replies .
(Gizmo49 in Scotland) -
[ 05-13-2013, 06:29 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- CBT ? I do not know that that means. [As in, the doctors say all you "need is cbt and exercise."] -
Posted by Keebler (Member # 12673) on :
- With the bite, the reaction, symptoms that followed, the positive test, it sure does look like lyme.
The other negative tests cannot "negate" a positive test, no matter what your doctors say. Sadly, as in the U.S., in Scotland and other parts of the U.K. (and even Europe) many doctors will follow the U.S. group: the IDSA about lyme.
See following links for how the IDSA discounts lyme.
ILADS is the group that is at the forefront of the truth about lyme. You do not need another lyme test but you should be assessed for other tick-borne infections by a Lyme Literate MD (LLMD), preferably one who is ILADS "educated" as I know there are some sprinkled about the UK / Europe, maybe in Scotland but not sure about that.
Details to come. -
Posted by Keebler (Member # 12673) on :
- A positive is always a positive. If a test "sees" lyme or related activity that points to lyme, it "sees" it. It's there.
Testing, though, is never the only aspect of a diagnosic process. History, symptoms, clinical features, etc. are key. Those - with a positive test - complete the picture. (It seems very clear to anyone who is lyme-literate, of course.)
However, especially in the presence of classic chronic symptoms, if a test does not "see" it, that does not mean it's not there. A negative can be "false" for many reasons.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
"Some dr.s can pay the fee to join ILADS and not necessarily follow or understand all the guidelines with patients. They can claim they are ilads trained and NOT follow guidelines." (detail from a poster here who had trouble with a doctor who had claimed to be LL and an ILADS member but, after some time and money spent, it was clear he was not, not at all). -
Posted by Keebler (Member # 12673) on :
- I see you posted in another thread that you have been on steroid cream for skin and for mouth rashes, sores, ulcers, or the like.
Steroids can make lyme much worse. Even creams.
Be sure to see the notes I left for you over here - about the danger of even topical or oral steroid creams, lotion, ointments -- and also what can help a burning mouth and mouth sores:
Also ask for SCOTLAND and UK SUPPORT GROUPS near you -- or near to where you may have friends and relatives with whom you could stay a while now and then.
- While the positive lyme test, your history and symptoms certainly point to lyme, while you find a knowledgeable doctor, there are some things that can help.
1. Clean diet. I assume food in the UK is cleaner than here in the states. However, be aware that food additives, especially artificial sweeteners and MSG can make neurological matters much worse.
Avoid fried foods, even if fried in "good" oil as when oil gets too hot or old it can be very caustic to the inside of our blood vessels.
FISH OIL - don't have links but be sure you have a good clean source. Eating fish is good, too, as long as from a clean source (and not loaded with mercury). WILD fish, not farmed.
3. As lyme is a very toxic infection, support is vital:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 05-13-2013, 07:23 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Relax. I know this is a lot. I've tried to think of everything that I wish I had known early on and arm you with at least the basics.
Still, it's a lot to consider and intended as your study guide - a start to one, anyway.
Find a LL doctor
Take care of yourself
Rest & move as your body tells you to do (your body - not your ego, not guilt, or your heart's desire. We all WANT to run like the wind, but that may not be the message the body is really sending at all).
Know that you are on the right track and try to find some kind of peace and power in that. -
Posted by 'Kete-tracker (Member # 17189) on :
"we did 2 tests they are negative so you do not have lyme disease" But... but... there IS no conclusive test out there to rule out (or "in") the presence of an active Lyme infection! The C.D.C. AND even the IDSA say/ admit this. Current serological [blood] tests, like the 2-tiered ELISA test, are 50% accurate at *best*. Might as well flip a coin!
Lyme is a *clinical* diagnosis. Always has been.
Did your doctor- any doctor- *ever* start you on antibiotics for Lyme? A "Jarch-Herxheimer reaction" a day or so after starting the 'abx' is a good indicator Lyme is probable. Read up on it.
Realy sounds like you NEED another doc. ;-)
Posted by gizmo49 (Member # 40670) on :
Wow many many thanks for all the info much appreciated x
Posted by Carol in PA (Member # 5338) on :
I remember being in your shoes and all of this was overwhelming. I was too sick to handle all of the reading. Try to find a lyme literate doctor (go to search doctors on this site) in your area. You will probably test positive for lyme disease through Igenex testing. You will most likely then start antibiotics. It's a long road to healing but you are on the right track. God bless you.