posted
My doc thinks I have one of these, but not lyme. Even in the face of a tick, bulls eye resh and some positive 'bands' from Igenex.
Posts: 234 | From BC Canada | Registered: Aug 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
You need a LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
I should say so! (can you find a LLMD, Liz?)
but as for my question--you can have have FMS without having lyme, right?
Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
| IP: Logged |
DebAz
Unregistered
posted
I had FMS and CFS and without Lyme for 8 years. Hmm but then when I got the FLU and got so sick they restested for everything and Bamb..Lyme came up positive?? Was it always there?? I had tested positive for just exposure and not active years ago and they said that it was obviously not Lyme but I had a past exposure.. So whatever you get from that?>? In the end I think I had it all the time maybe/? or it was dormant? or.??? or??
IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It can't be determined (as far as I know presently) whether a person has "only" CFS or FM, but not Lyme, or vice versa. This is why antibiotic trials are sometimes used and why evidence is gathered with an FM or CFS case -- in order to see if they respond to antibiotics etc.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That is very logical and probably true, but unfortunately not everything has an explantion. I've asked myself why a thousand times over when different events happen in life. Don't get me wrong, I pursue everything as hard as possible, but we can't expect an answer or we'll drive outselves insane.
quote:Originally posted by djf2005: cfs and fm are labels for symptom sets that they know not the cause of.
its a huge mistake accepting a dx like that.
we are humans are part of this planet which is a part of reality where everything has a cause and effect.
if you are exhibiting symptoms than there is a cause and it should be investigated.
i know this seems like very simple logic and reasoning but apparently doctors lack it nowadays!
cheers
derek
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
I wonder if I should encourage people with these problems to get tested for lyme... And if the test is negative to find a LLMD and try abx anyway. I would hate to give someone false hope or to make them go through something worse than what they are already dealing with.
That why I wonder how strong the connection is.
I'm sorry to everyone who went years with CFS or FMS without hope before they found out it was lyme. Posts: 227 | From Northern CA (bitten in Illinois) | Registered: Jan 2008
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Well, you really have to ask yourself.
Why would there be so many people walking around with chronic fatigue, fibromyalgia(aching muscles) and lets not forget restless leg syndrome.
Kinda reminds me of how the flu is described. There seems to be an epidemic of these "syndromes" IT"S ABSOLUTELY RIDICULOUS.
The medical community would rather let BIG PHARMA come up with yet another drug instead of trying to figure out the cause.
Totally infuriates me how people are so duped and end up suffering needlesly. Don't be afraid to let these people know they could have Lyme.
If it weren't for someone insisting that I had Lyme disease and not chronic fatigue I probably would be dead.
Your very kind to be concerned. Don't be afraid to speak up,
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
| IP: Logged |
DebAz
Unregistered
posted
I agree. I wish someone had told me.!!! I even tested positive for exposure back when I got sick but NO ONE followed up on it and NO ONE seemed to even talk about it as an option.. Not until last year after 8 years did my doctor do a full work up and found I was positive for Lyme and had the CDC standards and was reported as a case to the CDC. At first it sounded sacry but then it gave me some new direction to work on myself beside working on just the symptoms. it is true that and I do belive that CFS and FMS are the symtpoms of some deep cause and I belive that cause is the infections we all talk about and more to come..
IP: Logged |
posted
You've got to wonder how some of these doctors can live with themselves watching patients suffer with these conditions.
They should be fairly intelligent people.
Are they clueless about the possibility of an underlying infection? They supposedly became doctors to help people, yet they treat us so heartlessly harsh.
And I can assure you, since gaining all this weight with Lyme, they treat obese patients like scum. If one more doctor disgustedly calls me fat, I'm going postal on 'em.
Jan
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
| IP: Logged |
posted
I don't think everyone with fibro and/or ccfs has lyme in particular however I think fibro and cfs are systoms of something else.
Whether its even something that is later actually called fibro or cfs specifically until they can tell what causes it I say its not a real diagnosis but more a symptom of something.
now they may not be able to figure out the cause in all people and until they do treating the symptoms is necessary. But until they can do a test for a "fibro factor" or something I dont think any dr. or patient should stop looking into what else may be going on.
perhaps people who have had relief of symptoms through the various treatments have something more closely related or they have the "real" fibro, but anyone not being successfully returned to function deserves to not being given up on!
poor janis that is just completely awful! I got so mad at my last dr too because she reprimanded me about my recent 7 lb weight gain but it was over like 5 months and i was only 12 lbs over the top recommended weight for my height and most of it from all the meds she was making me try!
(not abx of course that would make too much sense but antidepressants of course!)
drs. need to all go back to sensitivty training. Yes we all need a push to keep in shape sometimes but seriously when we are too sick to excercise calling us fat and lazy is just completely beyond rude and uncaring!
-------------------- If I could only figure out myself I could conquer the world! Posts: 21 | From Northern California | Registered: May 2008
| IP: Logged |
posted
I wish we could get everyone with FM and CFDs to do an antibiotic challenge to see if there's a big response or not. But lots of people with those dx refuse to consider any other dx possibility.
I was a classic FM person for 25 years. When I found out I had Lyme, I had a huge response to my first and only abx, clindamycin (150mg 4x/day - my own idea - it was in my drawer as the only abx I knew I had passed without an allergic reaction in my history): my FM pain of 25 years went to zero in one week's time.
A known tick bite 25 years earlier, FM symptoms began three months later. I can date every symptom.
Liz, a bull's eye rash alone means Lyme. I know it's hard to find an LLMD in Canada. A lot of Canadians are coming to the US for tx. I don't know if it's possible for you to find a way to get some antibiotics? As well as read up on all the different things that people report here that they do to treat Lyme.
Janis, I'm sorry doctors are insulting you over your weight. They need to be educated.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
FM and CFS are syndromes that probably have anumber of causes, one of which (and maybe the main one) is Lyme. Probably molds and heavy metals can be causes and maybe other microorganisms that we can be infected with in other ways. FM and CFS are really just symptom sets.
-------------------- Just because it' s not nice doesn' t mean it' s not miraculous. --Terry Pratchett Posts: 121 | From Nazareth, PA | Registered: May 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
YES. YES. YES to Derek:
Originally posted by djf2005:
"cfs and fm are labels for symptom sets that they know not the cause of.
its a huge mistake accepting a dx like that." end quote
=============================
Neither CFS nor FM are accurate diagnoses. They merely describe symptoms of what is highly likely a chronic stealth (hidden, sneaky, dangerous) infection.
To accept a label of symptoms as a diagnosis can ruin every phase of one's life and, sometimes, even contribute to an early and miserable end to that life.
There are MANY different tick-borne infections. Borrelia, Babesia, Ehrlichia, Bartonella, RMSF are just some of those. This is an enormous field of study - but it is not taught in medical school beyond a mention which does a huge disservice to both doctor and patient.
In addition to the list of tick-borne infections, there are MANY other chronic stealth infections that need to be considered.
A good LLMD (who is educated in the work from ILADS researchers) is the best diagnostician in the field of chronic stealth infection.
Aside from actually knowing about how various stealth infection affect the body, their various forms and cycles, a good LLMD also understands bioflim. In addition, a good LLMD considers the importance of liver and endocrine support - and nutrition.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I was told I had Chronic Fatigue Syndrome when I was 18 (after being sick for a year) and that there wasn't anything that could be done, I would be like this forever.
I went home and bawled.
I was just diagnosed with Lyme last month.
I think there are too many people who (like me), accept one doctor's diagnosis (he was the first doc who game me one beside the 'mono' my pedi gave me).
It's a shame, although being in Ohio, especially over a decade ago, who would have tested me for Lyme with a Western Blot (tested neg with an Elisa).
I hope FM and CFS are debunked soon and they start testing people with these 'illnesses' for Lyme.
posted
I am still trying to understand why I am sick and what is causing it. I was told by several CFS docs earlier this year that I have CFS from a sudden onset(based on symptoms and very high EBV) then in the summer I went to see a LLMD that told me I had Babesia(from + Igenex)Lyme(from several Igenex specific bands present) so she started zithro/mepron/flagyl treatment that I was on for almost 2 months but I stopped because abx were further damaging my stomach, which made me feel like death now I am clueless as to what is causing my situation.
I have not gone back to my LLMD. I heard that she is very good but she doesnt even look at viral issues. I went to Detroit to see a CFS doc but I havent gone back because he wants to try antivirals and he does Lyme testing only through Labcorp. I just wish that I could find a LLMD that looks into viral issues as well.
I am considering trying someone that is familiar with functional testing and nutrition and I heard that he does do Lyme testing but tests through Central Florida Labs. His focus is on fixing stomach, liver issues while strengening the immune system with supplements and nutrition. Who knows if this will even help. Just feeling so confused and hopeless.
Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
| IP: Logged |
posted
I was dxed with FM,CFS,AND MCS for 23 years and finally got a positive for lyme and company 4 yrs ago.I was tested when first ill but it was the test that is no good. Foggy brain unable to remember the name of the test. I agree with Derek. I know many people that have the FM,CFS dx and I have told many to get checked for lyme with IgenX. Most will not listen,including my daughter.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
| IP: Logged |
DebAz
Unregistered
posted
I recommend concentrating on treating the positive infections you have and not worry about the actual diagnosis as in the end they all are caused by some underlying and multiple infection base and if you educate yourself on each of them and try to treat them then you are treating yourself and the symptoms -- which are CFS and FMS ) should decrease and or go away. Good Luck.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[tsk]](graemlins/tsk.gif)
Printer-friendly view of this topic