posted
I don't really know where to begin.... Okay. I spent many years on Cape Cod, in July 1995 I had a bulls eye rash on my abdomen, flu like symptoms...all indicators of an infection via tick bite. Even tho my Doctor did the western blot test repeatedly, test results were always negative. However, I have had serious health issues attributed to Lyme and through a process of elimination my Doctor finally gave me a diagnosis in 1998.
The bad thing is he started me on antibiotics way too late, the disease was already running it's course and it was horrible. I had mental confusion, developed a stutter, could not finish the simplest of sentences, chronic fatigue, arthritis, every symptom known seemed to be affecting me.
From 1995 to 2000 I was barely functional. In late 2000 I slowly began to see an improvement in my overall health. By 2001 I was able to return to work and be productive, although I still had fatigue and arthritis in my knees.
fast forward to today.....
I am having a CT scan of my brain done this week. My Doctor thinks I may have multiple sclerosis. My questions are these: Does having Lyme Disease mimic the symptoms of MS? Could I be having a 'relapse' of Lyme symptoms? Does anyone here have both Lyme Disease AND MS??
If there are files here, just point me in the right direction and I'll read them. thanks Sharon >^..^<
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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posted
I am new, relatively speaking to this board , the last several months.
I was a registered nurse. Let me tell you, the medical community , on the whole, knows little. Most of the things I have learned about Lyme wasn't until I got here. Lyme and the coinfections are so complex and the interactions between each people differ greatly. Lyme is the great imitator. I know of nothing else that can mimic problems the way- Lyme and its tick soup compartments do. Yes, it can mimic ALS and MS. Lyme, as a spirochete, emits neurotoxins which can effect the nervous system greatly. Again, all depends on the strain.
I have cell wall deficient strain, which has caused a lot of problems. I don't want to overload you with too much information, but, yes, lyme can effect a lot of things.
I was about a year before diagnosis \and start of tx. Though early tx is best, time in itself is not the only indicator of late lyme. Remember, too the antibiotics for Lyme do not effect things as babs. There are a lot of things in the equation.
Stay strong, keep fighting and there is plenty of support here on this board.
Other board members probably can give you much more detailed information than I can. More experirnced and knowledgable for various reasons. There are wonderful links here for information and Lyme groups.
Have a safe and strong journey as you approach better health. Wishing stronger days and a brighter tomorrow!!!!
Posts: 719 | From Delaware | Registered: Jan 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Some here believe MS is Lyme ... at least it can precede it. Wow, your case and story sound classic!!!
The fact that you had a bullseye would make me suggest you run to an LLMD (Lyme literate medical doctor - not an offficial designation) ..... do not pass go .... Try to stay away from infectious disease docs and neurlogists. They don't believe in chronic lyme for the most part. Best to get doctor recommendations from this board.
Please post in seeking a doctor section of this board.
Where are you? We need to know that to suggest appropriate docs.
Also, you can start by reading the newbie links at the top of this list . There is a lot ..... take it slow. Try not to be overwhelmed, we will help you, you will get better.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Sharon,
My LLMD said she has treated many patients who had been diagnosed with MS and had Lyme.
The cause of MS is not known. Some on this board believe Lyme is the cause. Others believe that there is probably something that triggers the body to react with MS, whether it be an infection or other evironmental trigger.
I was bitten in 1986. I wasn't diagnosed until 2004. So don't worry about starting abx "too late." It means you will likely need more aggressive treatment, but treatment is still possible.
You do want to find a doctor who is really lyme literate. This means somebody who treats people who have late-term lyme and has success at it.
I wish you luck.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
WELCOME Sharon, I was misdx for 34 years so it's never to late to start!
I'm having a brain MRI done this Wed. 1 pm; I'm being put under since I'm claustrophobic and couldn't handle it when they strapped the face mask on me ... close contact & I couldn't breath.
I'll be back and put a web site I read for the 1st time last night & post it here for you.
It shows brain scans/mri's & WHAT THE BRAIN LOOKS LIKE FOR MS, LYME, Alzheimer's!
EDITED FOR BRAIN LINK FOR MRIS/CTs, etc. Be sure to go to the bottom of that & read my comment I posted last night WHICH link it was so you can go directly to that one for photos of MS/lyme of the brain...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.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
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.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Sharon
Read the Newbee pages-- Start with Dr B pages -- they are written in easier to understand language--
Many Many folks here where DXed with MS and they really have Lyme and co infections--
Your case matches many here --
Lyme symptoms can come and go alittle --then they mostly stay--
My WB test came back IND- but I have Lyme and Babs - For Sure -No Doubt--
The WB tests are Very Poor and false negitives have caused huge amounts of problems for many here--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Sharon, I have a close online friend with both MS/lyme. She had lyme earlier & very debilitated with MS sx now ... been hospitalized quite a few times since xmas.
There ARE both MS/lyme folks on board.
Do a search...found at the top of page. "MS and lyme" in medical ...any date and enter. You should come up with quite a bit.
posted
This isn't an answer to your question but wanted to let you know. A CT scan is NOT the best diagnostic tool for MS or Lyme lesions. Whichever is the cause.
The best test is an MRI of the brain with and without contrast.
Good Luck
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
WOW! I'm always so amazed when someone practically writes down my exact symptoms for years.
"I had mental confusion, developed a stutter, could not finish the simplest of sentences, chronic fatigue, arthritis, every symptom known seemed to be affecting me."
My mimic disease was LUPUS though. Don't have that anymore.
You've come to the correct place to learn and hopefully get on the healing road.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
WOW!! I feel like I just came home. To a place I should have been all along, with people who know and understand me. AMAZING!! **********************************************
I will try to address all your responses, and thank you to everyone who took a few minutes to respond.
I have never been on any long term antibiotic therapy. My Doctors have always treated the individual symptoms as they appeared.
In 2004 I battled skin cancer, Stage 4 squamous cell carcinoma [I am in remission] and in September 2005 I was dx'd with Type 2 Diabetes. I have chronic migraines and need to have my right knee replaced sometime this year, because the lyme related arthritis has deteriorated my knee.
I moved from Massachusetts to North Carolina in October 2003 to care for my husband's Mother who has since died from colon cancer.
I promise to check out all the links and web sites you were kind enough to offer. And I realize that an MRI is so much more definitive than a CT scan for the MS, but I have no insurance and the MRI is too expensive.
So, am I understanding the info correctly that some people DO have both Lyme and MS and it is believed that the Lyme actually causes the MS?? That really stinks!!
Another thing that I am certain has happened to everyone in this group is the looks from health care providers that say "You're a hypochondriac, it's all in your head." HaHa, after this brain scan I may just prove them right...for all the wrong reasons.
Another thing I noticed that I was not aware of, and maybe I misunderstood, I can give someone else Lyme Disease? And it can be passed on from mother to child in utero? I did not know this was possible and I need more information about this aspect of the disease. I am thankful that I had my children before I was infected. And none of them shows any symptoms of Lyme. [knocking on wood] ************************************* Okay, I am off to gather info from all those links. Again, thank you for being here to educate me, I appreciate it.
Sharon >^..^<
-------------------- LD 1995 [dx'd 1997] Never had antibiotic treatment Stage 3 skin cancer ['04] Diabetes2 ['05] Name an LD symptom, I've probably had it or have it still. >^..^< Posts: 20 | From Author, homemaker | Registered: Mar 2006
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