posted
I ahve been doing some research and I have a couple of questions to ask. 17 years ago I had a bulls eye rash on my ankle. Got tested for lymes, came back neg. and the doc said I was fine. OK.. I was alos diagnosid with Ebstein Barr Virus. Several years later I started noticing my joints really hurting. I than started having dizzy spells (which in turned made me have panic attacks) FInally had one BIG panic attack. Felt like I was having a heart attack. They did an EKG and gave me xanax. SO I was labeled right then and there. I was nervous to tell them about my memory issues. I could be driving and cannot remember how I got from point A to point B. It doesnt happen alot but enough to scare me. SO I basically have just been living like this until recently. I wne to my hemotologist for a visit and she diagnosid me with Livedo Reticularis. I am scheduled to see a rheumotlogist on Tuesday. My question is, Ihave plugged into the computer Livedo Reticularis and I have had a couple of searches come back for Lymes. Which made me think back to the bulls eye rash. Is it possible to have had lymes for all these years?????? Where do I go from here???????
Any replies,stories or advice would be greatly appreciated!!!
Thanks,
Tara
Posts: 21 | From New Jersey | Registered: Oct 2009
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Yes, unfortunately, with a bull's eye rash, that means Lyme disease. It is typical for most of us to get the run-around for a long time before we get clued in somehow.
Tests don't always show positive, even when we have the disease. And sometimes we get sent for really weak tests that have even less of a chance of disclosing it.
We can also have other infections too, like you mention EBV.
Rheumatologists don't generally diagnose Lyme disease.
The doctors you need to see at this point are called LLMDs - Lyme-literate medical doctors, associated with the medical association, ILADS, which stands for International Lyme and Associated Diseases Society. They happen to be having their annual conference this weekend in Washington DC!
You can make a post in Seeking A Doctor for an LLMD in NJ - put NJ in the heading. Someone will send you a list of doctors in your area.
Also, I'm sure Betty will be along soon to send you the list of links to lots of Lyme info.
One major document to read is called the Burrascano guidelines - written by Dr Joseph Burrascano who was one of the first doctors to see Lyme patients. You can google for it and start reading!
Having Lyme is like going to Lyme school for awhile, to learn about the organism, what it does in the body, the symptoms it causes, how we test and how we treat. Treatment is varied and diefferent for each person.
More folks will be along - I gotta go -
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Thankyou for the info!! I will see the rheumotologist b/c its already scheduled BUT I am going to start searching for a LLMD ASAP!!!
Posts: 21 | From New Jersey | Registered: Oct 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Tara, if you got the bulls eye rash 17 years ago, you got lyme disease 17 years ago. The problems you are describing can all be symptoms of lyme disease. It will not go away on its own.
Where do you go from here? Find yourself a very good lyme disease specialist. The best way to do so is to make a post in the "Seeking a Doctor" forum of LymeNet. Name all the states you are willing to travel to, and you will get the doctors names for those states. Also, look to the left side of any lymenet page and you will see "Support Groups." Call those near you and ask for the names of doctors who are good at getting rid of long-standing lyme disease.
You are going to have to find out the reputations of the lyme doctors. Which ones have the most success at getting people well.
I got rid of my lyme disease (undiagnosed for 10 years) by going to a doctor who follows the Burrascano protocol. Dr. Joseph Burrascano is the lyme disease guru of the U.S. and the world. You can find his lyme disease treatment guidelines here:
I suggest when you call doctors' offices for an appointment that you ask if the doctor follows the Burrascano protocol. Find one who does. Study the Burrascano guidelines so you yourself will know what the treatment should be. Compare the treatment you are given to the Burrascano guidelines. Some docs say they follow Burrascano but they really don't.
Everyone I know (a number of my friends and acquaintances) got rid of their lyme disease by going to Burrascano type doctors. That's why I believe in the Burrascano protocol. There are other lyme treatment protocols, but I don't see them having much success--in my experience.
Look at pages 9-10 of the Guidelines and you will see all the symptoms lyme disease can cause.
Read about all the other infections the tick gives you at the time of the bite. Rarely does a person get just lyme disease. We call these other infections "coinfections." Notice how Burrascano says that the doc should test you for all coinfections and treat all that you have. Notice that you treat the patient based on symptoms since none of these tests--for lyme OR coinfections--are totally reliable. So, if you get a negative lyme test, it means nothing really.
Burrascano says to treat lyme with combinations of antibiotics (not just one at a time) and at high doses.
These are just some highlights of what good lyme treatment looks like.
So, do some searching for docs, read the Guidelines, and get a good doc who can give you your health back. The doc is the key to getting rid of this disease. I can't stress that enough.
I completed my treatment 4 1/2 years ago and I am still symptom-free, enjoying my life. I want that to be your story also.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
I ahve been doing some research and I have a couple of questions to ask. 17 years ago I had a bulls eye rash on my ankle.
Got tested for lymes, came back neg. and the doc said I was fine. OK.. I was alos diagnosid with Ebstein Barr Virus.
Several years later I started noticing my joints really hurting. I than started having dizzy spells (which in turned made me have panic attacks)
FInally had one BIG panic attack. Felt like I was having a heart attack. They did an EKG and gave me xanax.
SO I was labeled right then and there. I was nervous to tell them about my memory issues. I could be driving and cannot remember how I got from point A to point B.
It doesnt happen alot but enough to scare me. SO I basically have just been living like this until recently.
I wne to my hemotologist for a visit and she diagnosid me with Livedo Reticularis. I am scheduled to see a rheumotlogist on Tuesday.
My question is, Ihave plugged into the computer Livedo Reticularis and I have had a couple of searches come back for Lyme.
Which made me think back to the bulls eye rash. Is it possible to have had lyme for all these years?????? Where do I go from here???????
Any replies,stories or advice would be greatly appreciated!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I just looked up the livedo thing. So you have a "rash" like that too? Doesn't explain ANY of your other (lyme) symptoms.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Tara,
The others are right.
Hope you find an LLMD soon.
Keep reading and posting....there is so much to learn.
People here are very helpful.
Perhaps the lacey rash is associated with yet another infection, like parvovirus b 19....just a thought.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Tara, Seventeen years! So sorry for your pain and that you've not been helped before now.
Thanks to the above Lyme "brothers and sisters" you have some great info to get you started on this path.
May God give you wisdom in the days and weeks ahead as you make some very important decisions about your health.
Posts: 2188 | From Oklahoma | Registered: May 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Tara it sure sounds like classic Lyme. So sorry it
has taken this long. I know a fellow who would go
to the store forget what he went for and then
forget how to get home. I did not do this until I
started treatment. While you get an appt. with a
LLMD it may help you to get ready for treatment
as many of us get worse before we get better.
There are many research threads and things you
can do to keep from being ill in treatment. And
many friends here to help when you hit a bump in
the road. Prayers for a easy ride to wellness.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
lymetoo, thx for breaking up her entire post so we neuro lyme folks were able to read it.
yes, the bulls-eye rash meant you have lyme disease! what you don't know if tick was carrying other diseases, co-infections.
they gave you excellent advise at the top.
please brak up your posts in the future; we thank you.
IP: Logged |
posted
Sorry about the breaking up??? I didnt realize i was just going?????
Yes I have that lacey rash on my legs. When I looked up causes of the rash, Thats when I saw Infectious disease..ie Lymes, TB and such. Thats what made me start wondering about things.
I guess it is very well possible that somehing else is the underlying cause....But I want to make sure I RULE everthing out!!! I have heard of people being labled CFS and FIBRO and it has turned out that all this time it has been lymes.
I was actually shocked that people replied!! I joined another group, asking questions and no one answered, so THANKOU ALL!!!!!
Posts: 21 | From New Jersey | Registered: Oct 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Tarav,
Yes, Many, many people who had CFS and FMS diagnoses, later found out they really had lyme (and coinfections).
It happened to me and many others here.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Your story is the exact same as mine. I was bitten back in 1992 and got a Bulls Eye Rash and they tested me(of course it came back negative).
They sent me on my way and then years later, I started having bizarre symptoms. You are not crazy. The rash means you absolutely have Lyme Disease(It's indicative of Lyme).
You need to find someone who knows how to treat Lyme.
Many ppl with CFS and FM find out it is caused by Lyme Disease.
Good luck
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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posted
Once again thankyou everybody. I have picked a doctor and I am going to call on monday for an appt. I of course and still going to keep my Rheumy appt., just to make sure. But I def. need to rule out Lymes as well!!!!
I truly appreciate all of your answers and replies, It really means alot!!!!!
XOXO,
Tara
Posts: 21 | From New Jersey | Registered: Oct 2009
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bettyg
Unregistered
posted
tara, fyi, we have Lyme disease with NO S on the end; so correct the medicla staff when they say the other name please; it's our pet peeve.
posted
Hi Tara - don't be surprised if the rheumatologist is not that informed about Lyme disease. The doctor who is informed is the ILADS-recommended one.
And yes, we do answer around these parts!
Thx for taking the initiative to find out - your continued initiative to learn more about Lyme, how to test and treat, as well as connect with others in your area will stand you in good stead.
There's a lot to learn about how to treat. We do antibiotics, lots of supplements, herbs, oxygen treatments, energy treatments, detoxing, etc.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Sorry about the LYMES not LYME, I dont want to offend anyone. I am just new to all of this.
I am not starting any treatments until we are sure of a dx. The rheumotologist was just set up already, so I figure I better go and see what she has to say.
Tomorrow I am calling the LLMD in my area to schedule an appt. and I will take it from there.
Thankyou All!
XOXO,
Tara
Posts: 21 | From New Jersey | Registered: Oct 2009
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
Tara - Your story sounds just like mine.
I hope you get an appointment to see a LLMD real soon. You can get better but be patient because it will take some time.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
No, wait - there are a couple Lyme towns - Lyme, Old Lyme, East Lyme - it's ok, Tara -
Well, I'm just messing here - don't mind me -
If the rheumatologist is going by IDSA guidelines and ordering the ELISA screnning test, you won't get anywhere. We need ILADS guidelines and Western blot IgM and IgG antibody testing from a good lab, like Stonybrook, MDL labs, or IGeneX.
Posts: 13171 | From San Francisco | Registered: May 2006
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IS that one of the Questions I should ask the LLMD??? Which lab they use?????? Or do most LLMD's use the good labs?
Posts: 21 | From New Jersey | Registered: Oct 2009
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posted
Yes, good ones use the good labs; you can always ask them which lab they're using.
Thanks for the heads-up on Lymes, for those aware that it could be found in all Lyme-named towns - I'm sure it won't make me very popular around these parts, but it made sense to me.
Alright, I'll behave. Lyme it is.
Posts: 13171 | From San Francisco | Registered: May 2006
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