posted
What is the mainstream explanation of why some people get lyme arthritis and others get neuralgic lyme?
Do they recognize one can have neurologic lyme without ever having lyme arthritis?
What is the non-mainstream explanation?
I've never had lyme arthritis, but I do have strange peripheral nerve symptoms and myalgia.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
posted
I have heard that the arthritis kind comes later. I'm not sure that is true, but would explain why mine is that way.
It took years and years for me to be diagnosed.
I think it could also be the strain of bacteria.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I'm afraid ynou can't catagorize "Lyme disease" quite that easily, just as it isn't best treated via 1 method.
Some Lyme sub-species seem to prefer to colonize certain parts of the body (i.e: collagenous tissues in the knee or other major joints) whereas other B.B. spirochetes tend to favor spreading thru the nervous system, or areas lining the heart... or where-Ever.
Where one is most affected by this 'parasitic' infection also seems to depend greatly on one's particular physiological make-up & what areas of the body are in poorer or weaker shape, either due to age, heredity &/or injury.
Mine Started as a painful left shoulder after even a short car trip. I'd "support" it while driving... to no avail.
But then it became a deep, localized pain under the breastbone (lower-rib nerve pain) that wouldn't quit. When it became full-blown, my joints went unaffected & all my symptoms became neurological. (So much for that theory you heard, Lymetoo! )
Then months after I 'recovered'... or got back to 95-98%, my shoulders took turns locking up. But both resolved by themselves... after exactly 6 months apiece!
It is indeed a baffling, complex llness! Posts: 1233 | From Dover, NH | Registered: Sep 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I believe that both camps think that if the patient has a genetic predisposition to arthritis, then if they get lyme they will get lyme arthritis.
I had undiagnosed lyme for 10 years. I never had any arthritis symptoms. This may have contributed to the length of time it took for me to get a diagnosis.
Lots of non-lyme doctors expect a person with lyme to have arthritis, but I didn't.
I was diagnosed by a smart endocrinologist. He interviewed me and examined me and said, "I think you have either lyme or fibromyalgia." He tested me for lyme through LabCorp and it was positive.
Then, I eventually found my way to lyme doctors.
So, this endo thought lyme even though I had no arthritis symptoms. I am thankful to him to this day. He ended 10 years of misery for me.
I searched for a doctor who could diagnose me for 10 years. First, I went to a very respected internist. I told him my symptoms (no arthritis) and he asked me if I had ever been bitten by a tick. So, he was thinking lyme. Too bad he didn't test me. When I said I got ticks on me but never had a bite, he dropped the lyme idea.
After my positive lyme test, I went to an infectious disease doctor for lyme treatment. She didn't believe I had lyme because she required the patient to remember seeing a large red rash. I never saw such a rash. She didn't have a requirement for arthritis symptoms.
So, all this leads me to believe that both camps agree lyme can present with no arthritis. I have also heard that whatever system of the body is weak, that is the system that will break down during periods of stress in a person's life. So, again, the patient may have something to do with how the lyme presents.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Interesting question
Kete tracker your experience is an example of what my LLMD says happens.....that the the first symptoms experienced will also be experienced at the end. Kind of like it goes out the way it came in.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
posted
Yay....I always thought I had a weak brain....no wonder it attacked there My nervous system is a mess. So...PICC insertion on Thursday, sigh, first Rocephin infusion on Friday.
Don't know what else to do after almost 3 years of multiple oral abx....supps etc.
Hope it penetrates....I'm nervous, scared and hopeful...all at the same time. TS
Posts: 566 | From West Coast | Registered: May 2008
| IP: Logged |
posted
1. Different strains of Bb have different characteristics and proclivities; there are possibly over 300 different strains.
2. The general rule is most ticks will carry mycoplasmas, as well as viruses and other junk. These by themselves can cause symptoms.
3. Everyone's immune system is different; some more capable than others.
4. Treatment varies, which may eradicate some microbes, while "pushing" others into cyst forms to reinfect later.
5. Etc.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My experience the first attack was the joints. Noticable pain waxing and waning which was mystery to me until I experienced the rest of the story.
Six months later it turned to full blown neuro and severe arthritic pain, which happened with the flu-like illness from he!!.
It is part of the mystery with this illness. Medical history on us is all over the place.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
I had both, and they started about the same time, a month or so after bite. But didn't get really bad for almost two years (without treatment).
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
My first was knees/ankles.. then neck, then neuro.
I HATE this disease!!! I know there are a lot of other horrible diseases out there, but this one has gotta be in the top 10 worst..
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
| IP: Logged |
posted
Somebody sent a question to the CDC asking "why some only ever get arthritus joint swelling while others only ever get neurologic and myalgia".
I'll let you know what the response is. I'd be curious to know what the mainstream reason for this is believed to be.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
posted
I also had both. Knee/joint issues then neuro stuff. applewine, the mainstream reason will probably be something like it's just not Lyme. They're such idiots!!!
Posts: 246 | From south florida | Registered: Mar 2010
| IP: Logged |
posted
Any blatent incorrect statements are just as valuable as valid answers. That makes it easier to demonstrate that other claims which are not as obvious may be incorrect as well.
If for example they claimed lyme disease was caused by polar bears, then that would actually make it a lot easier to discredit them for all other claims as well. The most valuable data would actually be to collect the most blatent incorrect information that should be obvious to anyone not familiar with lyme disease and get that on the record.
That raises questions as to whether there may be other mistakes as well.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I also read somewhere that where the tick bites you influences what your symptoms will be. I was bitten on the side of the neck near my spine and most of my symptoms are neurological. I have also had some pain, on the right side of my body.
The mainstream theory is that lyme is cured in three weeks and all symptoms afterward are "late manifestations", residual damage from the original infections - or unrelated conditions with no known cause such as Chronic fatigue or Fibromyalgia. It is just coincidence.
So CDC scientist are so blind folded that they cannot pin the tail on the donkey. They have wandered away from the party and are trying to pin the tail on a tree outside.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
posted
My symptoms have just about all been neurological- Bell's Palsy, memory issues,etc. though I also had an eye problem. But what's kind of strange is that about three days before I got the bullseye rash and all the other symptoms -my joints hurt for about 24 hours - I remember because I couldn't close my fist, couldn't do dishes etc. and I couldn't figure out what was going on (didn't even know I was sick) then it went away and I never had joint issues again. I've always wondered about that, and whether anyone else had that experience.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
| IP: Logged |
posted
I never got bells palsy, but the cheek area of my face below my eyes feels slightly numb fairly often.
My vision jitters when I focus on objects at close distance and pan my eyes across the object.
I had very unusual changes in behavior years ago and had extreme energy and hunger and weight gain that caused skin damage, even though I was always an extremely hard gainer.
I currently have myalgia all over and have a neuropathy sensations that feel like something very cold or wet is intermittently touching my legs or arms. I have a buzzing in one spot, an itching in another and numbness in others. So 4 different neuropathy sensations and also constant muscle twitches all over the body. I have lack of energy as well.
I never had and swelling. I did have a circular mark that looked like a bruise somewhat that I thought might be lyme disease a year before the bad symptoms started. I decided it wasn't lyme so I didn't take a picture or go to the doctor. I didn't know much about lyme back then. Also, as a young teenager I got a round solid raised itching rash on one of my legs, but I didn't think it could be lyme disease and treated it with a prescription topical cream. It was about the size of a quarter or a little larger maybe. Those are the only marks that I ever remember.
The bad symptoms started when I got immunotherepy shots, though I don't know if there is a connection for sure. That is when I came down with a horrible flu for weeks, worst in life, all aching and super weak. Then a cold that lasted 2 months, then a puffy face. Those were the early medical problems.
Posts: 136 | From arlington, VA | Registered: Jun 2010
| IP: Logged |
posted
Hello, everyone is different as one poster said also everyone's immune system is not the same.
But I have read an article written by Dr. F, from NJ. -she says usually the symptoms one gets depends on their genetic background.for instance the weaknesses in like your mother, father or grandparents, etc. in other words the weak points of one's family history. Like back, legs, neuro problems, etc. I hope this helps a bit....
*** edited to remove doctor's name ***
[ 11-17-2010, 03:54 PM: Message edited by: sixgoofykids ]
Posts: 35 | From PA | Registered: Nov 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Which you get depends on your HLA (genetics) and on the strain of Bb you have. And, of course, what other co-infections you have.
Some of us lucky ones get both the arthritis and the neuro sxs! Actually, that's not that uncommon to have both.
Posts: 3792 | From around | Registered: Mar 2008
| 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!
![[Razz]](tongue.gif)
)![[shake]](graemlins/shake.gif)
![[Big Grin]](biggrin.gif)
![[Smile]](smile.gif)
My nervous system is a mess. So...PICC insertion on Thursday, sigh, first Rocephin infusion on Friday.
Printer-friendly view of this topic