posted
if lyme is from a tick bite, and i didnt have a red spot on me, im wondering how my bloodwork shows up reactive 1 band, im still struggling with that mystery.
with my symtom, weight loss is my biggest problem. i have now spur speech, flotters in my eye now and again, tremers, dont want to leave my bed. yet when
i had cfs, i was up and about, going to the gym, doing things, but at a slow pace, now this lyme story
i didnt had these in the times i had cfs. so is this a begining of lyme, this is all confusing.
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You ask:
* how could it be lyme if you "didn't have a red spot" ?
I recall your asking this in earlier threads as you said you never recall a tick bite or rash.
As I recall, some of the answers given were that many lyme patients have no memory of a tick bite, many never have a rash even if they did see an attached tick.
And, you wondered why, since you live in NYC, how someone who only goes to the gym and never out into nature could ever have gotten a tick.
Replies included many answers. Among those:
Ticks are carried by birds, mice, squirrels, etc. and can be found all over any city.
If you were ever in Central Park, any park, garden or terrace with vegetation, ticks can hang out there and even drop off a tree.
It sometimes take weeks, months or years for symptoms to develop after infection.
Even if you only ever were at home and the gym, others could carry a tick in on their clothing, etc.
Ticks can be so tiny that they can go unnoticed. When they bite, they do not hurt and you are unaware due to a chemical they inject to numb our skin so they can go about their work unnoticed.
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* With one band reactive, 41, as I recall, you may or may not have lyme. One poster suggested that since you had such a wide array of symptoms that it was likely.
You also have to consider the lab at which your test was done. Most labs do not check all the necessary bands or do the test correctly.
A good LLMD will do a clinical evaluation, take your history and then consider what additional tests might be beneficial.
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* Symptoms all need not be present all the time. You said when you had "CFS" that you did not have all the symptoms. As you know, "CFS" diagnosis is often what most lyme patients were told before they found out the truth about lyme being the underlying cause.
From the symptom lists previously posted for you, you can see that there is a wide range. Those can come and go - and some can progress more than others, depending upon the person or the range of total infections and nutritional deficiencies that maybe present.
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* What is the truth? You've asked this many times and all we can say again is that you need to be assessed by a LLMD who has the experience to properly diagnose whatever is going on.
A LLMD can also assess for other possible tick-borne infections and should be able to consider all the other chronic stealth infections for which you have received diagnoses and medicine (the Valtrex or Valcyte).
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* Have you posted in "Seeking Doctor" forum yet?
If there is no way you can see LLMD, please contact your local lyme support group for names of other doctors who are lyme educated who may be able to offer you a stepping stone.
No one can tell you what the truth is. You need to see an expert. If that is not at all possible, be sure to read the Burrascano and Singleton works posted previously for you.
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* In the meantime, the self-care and nutritional guidelines posted earlier for you should offer some help. Some of the symptoms, as others have mentioned, can be helped with some supplements such as magnesium to help calm the nervous system and lessen the tremors.
It's a very tough place to be, not knowing for certain, and I do hope you can find answers - and an expert LLMD who will see you in person is the best way to proceed.
As well, sadly, I know of no other illness or condition that requires so much from patients regarding self-education at a time when even basic functioning is nearly impossible. But if you can't read some of the basic links, do you have a good friend who can do this and then read some to you?
If you find a good doctor soon, you can depend upon him or her for guidelines but there is still so much reading required to understand all this.
Perhaps someone in your local lyme support group can help you find a tutor.
Be sure to go back to that list of links suggested for your file. So many links suggested above are right there.
Good luck - and just hold on. This can get better. -
[ 12-27-2009, 05:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Many who have Lyme never had a red spot. I never did. I had 8 positive bands, clearly had Lyme, and never saw a rash.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
a lot of people cna't recall a rash. i did have one so i guess you could say i was lucky.
but i probably had lyme long before this time so it's hard to say.
truth? i'm not quite sure what you mean, but get the igenex test. that's positive for sure. and getting a good llmd is the best way to go ahead.
unfortunately, you can second guess alot about this disease.
all i can say is everyone is different, our symptoms may be similar and meds are different, seems nothing is common except the disease.
even the treatments are different, what works for one won't work for the other.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would google it=rashes in borrelia. I never had one till I started treatment.
-------------------- 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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julielynne4
Unregistered
posted
Although i have read many of your threads, can you tell us if you have an appointment with an LLMD?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Julie,
I think I recall street saying in another thread that a first appointment with a LLMD is set for Jan. 4 - next Monday.
Hope that is correct. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
never got a rash, but remember the bite was clearly from an engorged tick that I found on my thigh the following day after working out in the back yard
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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posted
I've heard that only 20-30% get a rash.
Posts: 13116 | From San Francisco | Registered: May 2006
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I do not remember a tick bite or a rash, so try not to dwell on the fact that you didn't notice a red spot...it happens alot.
-------------------- 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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