posted
I know everyone was concerned for Meg's and I am sorry if you didnt believe it was me that posted the first reply. But we had been getting alot of calls and most of them were from folks on here. Megan DOES NOT have Lyme...we have checked and doubled checked...I am not stupid, I dont believe the first doc that gives an answer to me...that was the reason for having her seen so many places...She has what is called a Multi Complex Connective Tissue Disorder...which is a combination of more then one connnective tissue and/or autoimmune disorder. They are now in the process of r/o certain ones and confirming others. We finally got an answer when Megs got pregnant in Jan of 2006 and all her symptoms went away and then resurfaced when she had the baby. Now with the right treatments she is down to just 4 meds a day mostly for pain and epilisy. Megan and Draven (my 8 month old grandson) are doing very well at this point. Again I am sorry if anyone took offense at my post...but as I said in it, everyone with every disorder out there was sure Meg's had what they had and it was getting to the point that I could not even use my phone because it would not quit ringing long enough. We had to have a second line installed and just let an answering machine pick up the listed one. I am sure most of you can understand how frustating that would be if someone in your house is ill. I would like to thank everyone for their input and prays. They were and are appreciated.
Posts: 5 | Registered: Jan 2005
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posted
It took alot of r/o all options before they made the DX. I guess the fact that blood lose was what started the whole thing helped the doc's. That and her symtoms going away well she was pregnant. With this she has symtoms of all the disorders at the same time and/or by themselves,thats why they had DX Fibro, lupus and MS at different times and then ruled them out at others. Now they are saying she does have fibro and lupus(SLE). No question on those 2( she has even developed the lupus rash) we are waiting on the lastest M.S. test to come back. There are a couple more that they are still double checking for that I can't even spell. But Lyme was r/o. She has a team of dr's working together now, but her doc for pain management has been the most help. As for treating it, its the same they were doing, treat the symtoms, but knowing what the illnesses are makes it easier. There are some meds for both fibro and lupus that will make the other one worse (we stay away from those)That was part of what was confusing the doc's because they were using some of those meds to try to r/o things.They would give her lupus drugs and declare it wasnt lupus because she got worse, and what was happening was that the fibro was flaring and it made that worse, same thing when they tried things that worked for fibro. Again Thank You all for everything you did. I will try to keep you informed about Meg's , but as she is now living with me again, I am very busy with Draven. Grandma here does most of his care because Megs gets wore out and sore fast still. But she is in great shape compared to when she first got ill.
Posts: 5 | Registered: Jan 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Best wishes to her- they thought I had SLE for a year when I was 21 and I had fibromyalgia with Lyme- both are no fun!!!!!!!!!!!!!!!!!!!!!! Take care- and best wishes with the baby- great name!!! and lots of work!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Good News...lastest M.S. test showed no sign of M.S. Off to see the Rum. tomorrow and see what else they want to check for. Pretty sure there is one more hiding, also checking up on baby. Looks like it may be possible he has neonatal lupus (he has had a rash since he was 2 months old) docs have called it everything from cradle cap(on his face and legs) to excema. Here we go again round 2 new pt.
Posts: 5 | Registered: Jan 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Megs Mom- thanks for the update- I am reading avidly because I had much of the same presentation at one point (then mine became much more neurological!!). I am curious as to how did they rule out Lyme? With me, I was incredibly lucky!!! Well, in one way- when I was younger they thought I had lupus over and over for a whole year and kept testing my ANA but I kept being negative ANA (tHANK GOODNESS!!!!!!!!!). Then when I was older I was clearing brush and got tick bites and a rash and got really really sick and my lupus came back and THEN SOME. In retrospect I tend to *now* put that suspected lupus in my history as presumptive secondary Lyme because I was so so SO bad when I was older and because all of the suspected lupus symtpoms came back but with a vengeance and a rash and tick bite!!! I was lucky enough to have positive serology as well but from years of somewhat facilitating a Lyme support group I have realized HOW lucky I am because *many* people are completely seronegative (and I see them get better with tx- and some have had EM rashes).
Anywayz, NOT everything is Lyme- I know that- I am NOt assuming she has it- there are plenty of horrible things out there besides Lyme- she just sounds so much like me at one point I am just curious- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Well, it sounds to me like Lyme is still a very real possibility. I'm glad to hear she is feeling better though.
I would hope she would stay off steroids.
Odd that the baby has a rash. Can pregnant Moms give Lupus to their babies?
I don't know much about Lupus.
Posts: 1366 | From Southeast | Registered: Sep 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
MegansMOM,
I'm sorry to say this because it's not my intention to stir the pot, but many people with Lyme get "the lupus rash" and "fibromyalgia", as well as all the symptoms of MS.
Fibromyalgia is a symptom, not a disease. What is the cause of her Fibromyalgia?
I was felt much better during my pregnancy, it was incredible, symptoms lifting like a veil in early pregnancy and not returning until months after giving birth.
I am also curious as to how they rule out Lyme?
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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in any event, i hope all is as well as can be and getting better.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Wow- hadn't seen that- thanks Mo!!! It makes me even more think it may be Lyme. I was just wondering how they could possibly rule it out- and Doctors DO live under rocks when it comes to Lyme!!!!!!!!!!
I had fibromyalgia from Lyme and suspected lupus from Lyme- and thank goodness I got a good doc!!! I am fine now!!!!
You have been dealing with this a long time MegansMoms!!! And now a grandkid too!!!!!!!!!! THAT is a lot to deal with- I have a two year old myself and she is a handful- luckily a sleeping handful right now-!*)!*)!
Would you consider taking your daughter for ONE visit to an LLMD- a Lyme Literate MD? Just once>? You never know!!!!!!!!!!!!!!!!!!!!!!!!!!!!
It does sound like Lyme!!!! And maybe other TBDs!!! Could NOT be as well- I am not a doctor-but a Lyme doc would know!!!!!!!!! Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I've been sitting here and wondering since this post went up how Lyme can be ruled out.
I'm glad someone else asked and it isn't just me.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
If I'm seeing this right, the dates are recent...
but MegansMOM's registration is listed as "Jan 2005"
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So horribly sad to see this post. A perfect "all that is wrong with the medical world" put down right here before our eyes.
The top 3 MIS-DIAGNOSES for Lyme and coinfections are probably Fibromyalgia, MS and Lupus.
Many patients who get pregnant and have Lyme feel much better till the baby is born. Progestrone, which increases in those who are pregnant.. and stops when the baby is born.. is one of the out of whack hormones affected badly by Lyme. That is why she felt better then.
The Multi Complex Connective Tissue Disorder is nothing more than a big name applied to a bunch of symptoms and they have no clue what causes it or how to cure it.
It simply makes a person "feel better" to think they have a disease with a big name... and even better when several doctors who have messed up along the way finally agree in an effort not to get sued. Their victim accepts there is no cure and only symptomatic treatment because the doctors say so.. and trudge through a shortened and miserable life trying to "live with it".
How many young women develop 4 MAJOR complex "symdromes" with no known cause and no known cure.. that ALL mimic Lyme and coinfections.. in a Lyme endemic area famous for MISSING Lyme?
Up to 90 percent of the people with Lyme are missed with blood tests. There are over 300 strains of Lyme in three forms... and the tests are not developed to detect more than ONE strain of ONE form... and THEN they still miss 90 percent!!!
Epilepsy is one of the more wicked symptoms associated with neurological Lyme. So NOW there are 4 major health problems?
There are NO tests that confirm someone has Lupus or Fibromyalgia. NONE!!! Those diagnoses are considered by doctors themselves to be some of the "garbage-pail" diagnoses which are given when other things they know about are ruled out. And they are used ONLY because other things can't be detected as a cause.
One of the "CLASSIC" signs of having Lyme disease and coinfections is to give someone who has another diagnosis the meds that are suppose to help that problem... and instead it makes them worse.
And coming from MICHIGAN? The hot bed of Lyme and over abundance of IDIOT doctors? COME ON!!!
And the MAYO CLINIC no doubt? Anyone here who has been to the Mayo Clinic or a Mayo Clinic trained doctor and GOTTEN a diagnosis of Lyme when they actually had it? NO! I've NEVER heard of one out of the thousands of people I have seen over the years. That is why our slogan is "HOLD THE MAYO"!
And that poor baby. I dread to see both mother and child left to suffer the rest of their lives because this is happening. They will both continue to get worse without proper treatment... and be "doctored" and "druged" till there is nothing left.
Congenital LUPUS? How much more GARBAGE will those doctors pile on top of this blunder?
A Lupus rash? Been checked for Parvo? Nah.. I don't think so.
Sad, tragic, sad and bad.
Did anyone tell the poster that the person who originally posted this article in an attempt to help this family (Rose).. who has been also fighting Lyme for years.. died yesterday?
This is sickening.
We've lost two more people to the ducks.
All we can do now is pray for their souls... and hope it won't happen to others.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
This thread reminds me of a very sick woman I met through my naturopath's office. The naturopath had been treating this woman off and on for 2 yrs. Once she met me(I was her first lyme dx patient, she realized my sx were alot like this other woman.
This woman had been told by one of the countrys best ID docs from New York that she had MS. She told me that doc ran a lyme test and it only came back just a little positive, so she didn't have lyme, just MS.
When I met and heard her story there was no doubt in my mind...it was classic and very serious lyme. No doubt. I asked her how you could be just a little pregnant? That ID saying just a little positive for lyme left me dumbfounded.
I drove across town and I spent an hour explaining lyme, giving her sites to read and LLMD info. This woman sounded a lot like Megansmom, angry that anyone would even suggest it was lyme. Who was I? This ID is a trusted friend and doctor. The best. It's NOT lyme she told me over and over again through internet contact and phone calls she made to me. I finally quit trying.
This woman's doctors had her so medicated and I just felt so helpless trying to make her understand. She was a barely talking walking zombie. But she fought the lyme possiblility. Just the way some of us have seen it at times on this site.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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