posted
As I try to decide if I genuinely have lyme I must ask...People with lyme discuss every single little physical "happenings" with their body. I relate to many of them. My question, if you asked the general population on a whole, how many people have the many of the same problems just because they happen to everyone, not just Lymies. Eg. low body temp, painful root canals, lower blood pressure to name a few. Maybe low body temperatures are very common but healthy people just don't stop to check theirs. Many healthy people have problems with root canals not just lymies. Just wondering how much to read into these simililarties. Do I count these things as true lyme symptoms? Hope this doesn't sound too confusing!
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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I wouldn't count low body temperature as an actual symptom, per say. I think it is simply further back up evidence to support the rest of the symptoms that are more overt that are associated with lyme, like the deep and shooting pains, numbness, anxiety, depression, etc, etc. That's what I think.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
It is very confusing and it is hard to sort out and it IS very easy to doubt yourself.
But there will come a time when you just KNOW that you are NOT experiencing the world as healthy individuals do.
Some of the lyme symptoms are experienced by a larger audience, and some of these are the least bothersome, but are still part of the whole picture for us. It is important to note these symptoms so that you can track your progress back to health.
For me the less bothersome ones are just to be noted, not to be grieved.
just my opinion, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
[QUOTE] For me the less bothersome ones are just to be noted, not to be grieved.
Thanks Trails, this is exactly what I have been doing, noting the less bothersome ones. I'm at the stage where the doctors don't listen to me and I am trying to build a file to present to the next doctor I see. I still have doubts but when I read about these little annoyances I relate to all of them!
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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posted
I have the name of an llmd but need a referral which I have not yet demanded. I have been through 2 years of problem after problem that have been treated individually, most cleared on they're own but I never had any explaination for the causes. I've always felt I can't possibly have this many things wrong with me and was sure one day I would find something to explain everything. Lyme seems to do that,however, I do not know of a tick bite or recall a bullseye rash.
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
smercer-
Having been a very healthy person, with no little or big symptoms of anything I wrote a lot off as sports injuries, age and wear and tear, for a few months.
A point in time comes when you have to say, I was very healthy a year ago, or whenever, and now I have all these "things" wrong with me and I feel old and the doctors I have seen have no clue why, except to say I was stressed and overworked and needed a vacation!
I was lucky, I tested positive the first time. Unfortuneatly, I was denied treatment becasue I looked too healthy. And then the circus to get good treatment began-
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey Smercer 40-50% of people with lyme never get the rash.
And alot fewer ever see the tick that bite theam. Many of the ticks are as small as the period at the end of this sentence.
And many feed in hard to see place's, like the hair and just fall off when their done feeding.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
here's one I never know if it is Babesia or not: Nightmares.
I have had several LLMDs tell me it is Babs.
But I have had nightmares my whole life. I have had a stressful and crappy life even BESIDES Lyme so I kinda think the night mares are not Babs.
BUT--every once in a while I will get a big scary one and it is right before a HUGE herx. Then I think.....hmmmmmmmmmm
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I get nightmares too, but they seemed to have been more vivid since I began taking nortriptylene and neurontin for my headaches. Maybe meds or remedies you use for lyme treatment cause this rather than the illness itself.
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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posted
This is where things get diagnostically tricky --- Lyme and PTSD can have so much symptom overlap that it really confuses the process. I think this is why folks with traumatic histories are often told they have "fibromyalgia" or PTSD, when the true underlying cause is Lyme.
I don't mean to discount the effects of psychological trauma on the body or mind, at all (crikey, I'm a trauma therapist!) but it does lead to the possibility of a missed, treatable, medical diagnosis if one is not savvy to these things.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
What is PTSD?
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
We need to start thinking about this illness as a VECTOR bite and not a tick bite.
The greatest percentage of us don't recall a tick bite or a rash? Can you say you weren't bitten by some vector? That's a completely different story.
Tick bite is old school lyme 101. Most ducks even think if you didn't see a tick bite and have a bulls-eye then is can't be lyme disease.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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You can take your symptoms to doctors forever and even if it all adds up to Lyme, unless you go to a doctor who BELIEVES it won't make any difference. As you know, and I've been through this too, they will treat you for the symptoms and not care about the cause.
Or tell you nothing is wrong.
What are the telling signs? What finally got me was the pain in my face, when it became serious muscle spasms. They could see that, and still two of them came up with other answers.
I've never had a root canal, but I did have to have two old fillings replaced. The dentist used acrylic instead of silver. I couldn't chew on that side of my mouth for a year. I think that the nerve was super sensitive anyway, and going deeper into the teeth woke it up.
The whole side of my face hurt every time I bit down on those teeth, or ate something too hot or too cold. There wasn't anything wrong with the teeth unless maybe some chemical was seeping out. They did eventually stop hurting.
Was this from the Lyme? I don't know. It wasn't normal. Now I have other teeth that hurt, but the pain moves. It's bad pain, isn't it?
I just saw a LLMD Monday--he asked me if I had dreams, and if the content of my dreams has changed.
Good luck.
"I'm not a doctor, but I know what sick is."
Foresta Grump, aka Lynne.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
smercer,
Like you (and a lot of others), I chased separate symptoms from one very highly regarded specialist to another. Each seemed to know exactly what was wrong.
They all tested me and a lot of the tests came back negative. Each treated me, and I now know some of those treatments really hurt me. All of it took time, and in the time it took, my Lyme disease was getting a stronger hold.
My acupuncturist suggested the possibility of something systemic -- either Lupus or Lyme. I read the symptoms for both. The Lupus was iffy. The Lyme...well, as soon as I read the symptoms, I knew that's what was wrong.
The Lyme Disease organization in Canada has one of the best Lyme symptom lists I've seen. You might want to take a look at it, if you haven't already:
posted
Lynne, just for the record, when they began using "white" fillings instead of silver ones in teeth, especially molars, many people complained that the nerves just don't settle. (as my dentist told me) The teeth often remain sensitive. I have had this happen and my dentist says although white fillings have improved, many people still have the sensitivity complaint. I've had some white fillings changed back to silver and the teeth settled just fine. With root canals the nerve has been removed so in theory there should be no pain or sensitivity but lyme patients seem to have it. I too have boughts with pain in my root canals. It comes and goes. I just keep little notes about these similarities with lymies so If anything more develops they will help support my suspicions about having lyme.
Posts: 19 | From oshawa, ontario | Registered: Nov 2005
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posted
Lymies have problems with root canals? Oh no....I hadn't heard that before and I have to have one in the coming weeks. What should I not be looking forward to? Posts: 173 | From Lakeland, FL 33813 | Registered: Aug 2003
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bettyg
Unregistered
posted
Welcome Mercer to the board!
As a severe neuro lymie, I'm going to break up your LONG continuous paragraph to 6-8 lines of text & DOUBLE space so I can read/comprehend ok. We just can't read as is.
Could you edit your other responses & make several paragraphs like mine...DOUBLE spaced. This way with your assisting us, we can help YOU.
quote:Originally posted by smercer: [QB] As I try to decide if I genuinely have lyme I must ask...
People with lyme discuss every single little physical "happenings" with their body. I relate to many of them. My question, if you asked the general population on a whole,
how many people have the many of the same problems just because they happen to everyone, not just Lymies.
Eg. low body temp, painful root canals, lower blood pressure to name a few.
Maybe low body temperatures are very common but healthy people just don't stop to check theirs.
Many healthy people have problems with root canals not just lymies.
Just wondering how much to read into these simililarties. Do I count these things as true lyme symptoms? Hope this doesn't sound too confusing!
Mercer, I am going to copy/paste info I've put together including the 3 LYME testing blood labs.
Look at Cheryl's lyme info site on SYMPTOM list. I'm sure TREEPATROL'S NEWBIE LINKS has it too ok!
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Boy do I relate to all of your comments.
I,too, have had a miriad of symptoms over the years, most of which I attributed to allergies. Many, I just lived with like weekly migraines.
Even when brain fog began, I was just limping along wondering if I was going crazy. But when joint pain hit, man, there was no ignoring that and luckily I was immediately diagnosed with Lyme.
I have 5 root canals and only one ever gave me trouble. It sat right under my sinuses and I learned if it hurt, I could take a sudafed for the sinus and the tooth would quit hurting.
Teeth hurting is NOT necessary to determine if you have infected teeth. I tested positive for a high bacterial infection in 4 of my 5 teeth and they don't hurt at all. The bacteria are residing in the caves of the dead tooth where cells used to live. It is not painful because the tooth is dead. Don't let pain be your guide.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I hear you, smercer. Is the symptom from Lyme, PTSD, depression, aging, or some non-Lyme disease? Hard to say sometimes, and when it comes to dealing with non-LLMDs, I tend to minimize the iffy things.
But if many of the symptoms come on all at once, and they are in different categories, I suspect it is because of Lyme. If I can't attribute the symptoms to a time of the month, or a particular event (like soreness after a hard workout), I suspect Lyme. If the symptoms are intrusive (I can't ignore them), I suspect they might be Lyme-based, because I had no underlying conditions before Lyme.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
bettyg
Unregistered
posted
Welcome to you! I'm breaking up your long, continuous post. We neuro lymies need 6-8 lines of text and DOUBLE space please.
Please edit/PENCIL icon your other long posts and please double space between them. We have several who have lost the majority of their eyesight, and we are helping them too so we can ALL share info. ok.
quote:Originally posted by smercer:
Lynne, just for the record, when they began using "white" fillings instead of silver ones in teeth, especially molars, many people complained that the nerves just don't settle. (as my dentist told me)
The teeth often remain sensitive. I have had this happen and my dentist says although white fillings have improved, many people still have the sensitivity complaint.
I've had some white fillings changed back to silver and the teeth settled just fine.
With root canals the nerve has been removed so in theory there should be no pain or sensitivity but lyme patients seem to have it.
I too have boughts with pain in my root canals. It comes and goes.
I just keep little notes about these similarities with lymies so If anything more develops they will help support my suspicions about having lyme.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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