posted
Hi there. Like most of you have experienced, I am currently dealing with trying to figure out why I feel crappy all the time.
And of course my doctor just runs the same blood tests over and over and seems to think Im overeacting.
My symtoms have been going on for years and include low energy, depression, light headedness, intolerance to cold and random odd pains.
Plus I get sick fairly often and it always seems to take me longer then most to get over colds and such.
My friend just told me that it reminded him of a girl he knew that had lyme. I read up on it and upon learning of the telltale bulls-eye rash I recalled a bite I had gotten several years ago.
I never felt or saw what bit me, but the bite was behind my knee.
It was about the size of a grapefruit, There was a small red bumb in the middle followed by a yellowish ring and then a purple ring.
The area was very sore and it hurt to bend my leg or walk. After about 3 days or so the bullseye bite completely went away but then mysteriously returned 24 hours later and lasted a couple of more days.
This sounds similar to everything that I've read except for the coloring. Nearly everything thing says that on fair skinned people the bullseye shows up red.
I am thinking about going to a lyme specialist but I would like to get some eductated opinions before I spend the money (I havent been able to work lately due to fatigue so money is tight).
I would really appreciate your advice and opinions. Thanks : )
[ 22. November 2007, 08:23 AM: Message edited by: Tabby ]
Posts: 42 | From new york | Registered: Nov 2007
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posted
My initial rash was red rings expanding with pale yellow in between. (5 inch diameter)
But later I had a rash appear suddendly on my back that had a thick dark purple border. The center was normal skin. It didn't hurt, but looked like a terrible bruise. Like someone stabbled me in the back with a hollow pole.
My lyme doctor said it was a "EM bruise" named after its coloring. He said it was not very common in someone fair skinned as I am. (lots of freckles, and from a family of red heads)
These rashes come in lots of different shapes and sizes.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
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The rash can vary quite a bit and not everyone who has lyme even gets a rash. Usually the rash doesn't hurt or itch. Ticks aren't the only insects that can carry lyme though. Here's a link to a rash from a suspected tick bite on a child -- does it look similar to yours:
Looking
Posts: 590 | From Canada | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Hi, Tabby,
someone should be along in a day or two with a welcome packet.
You said you've read some about this.
Pardon me if this sounds blunt. I don't know how to say this.
Many folks - early on might use the term "lymes" it is just "lyme" no "s" - and beyond lyme, there are often coinfections that need to be ruled out or addressed.
TBD = Tick borne disease same as TBI - tick borne infections.
Rashes vary. The bullseye is distinctive for lyme.
Your symptoms could by a TBD - or something else. However, you seem to have such a clear memory of the rash - you really need to be evaluted by a lyme/TBD specialist. If you took a photo, that would help.
[Edited to add: Because it can be overwhelming & take forever,] I would advise not comparing symptoms as you need to go with your symptoms to someone who can sort it all out for you. The bullseye rash is distinctive for lyme, BTW. [Edited to add: the other symptoms you have are certainly in the ballpark.]
I can not read your post as it's all pushed together. Most of us here can only read 2-3 sentence paragraphs. We need to have frequent breaks with white space. So, pardon me if I miss something you wrote.
If your current doctor is not working out, move on. The quicker you get this properly assessed, the quicker you can start to get your life back. You probably know, though, that it may take a while and is a process. But, a shorter one with a good doctor.
in the meantime, you might try the "lyme diet" - mostly avoiding all gluten and sugar (and of course, alcohol). Nutrasweet (apsartame) and MSG (in all its names) are excitotoxic and those, alone, could cause many neurological problems. Sodas are not great in any form. Most herbal teas might offer refreshment.
If you have gas heat or a gas stove, open windows daily to ventilate. Use the exhaust fan on your stove before turning on the burner.
Are you getting proper nutrition (enough protein, veggies and good fats) and good rest? Do you take vitamins and minerals (especially magnesium/calcium/zinc)? I assume you've had your thyroid checked.
Gentle exercise, but NOT aerobic until you get assessed for lyme/TBI. Aerobic can be too hard right now, but it's good to move and stretch as much as you can without wearing yourself out. That would be counterproductive.
You can find a suport group near you. Look to the left side of this page . . . 3rd down on the menu. They can help you find a good doctor - or post in the doctor section.
You say you'd rather not see a doctor now for many reasons, but you simply won't get a proper medical assessment from a computer screen. Folks here can help in some ways, but it's best to see a LLMD who can help.
I cannot stress that enough. Hopefully, you can find a LLMD who is on your insurance plan. If that is not possible, folks will do there best to help you figure out what next, then. Many do have to figure this out on their own, so we all do the best we can.
Best of luck to you. You have a right to be healthy again. LymeNet is here to help you find a way to do that. Take care.
Here are some sights that may be of help: ILADS www.ilads.org
I "ditto" all that Keebler said, Tabby, but wish to welcome you too...
If you could, on the top right of your post, you can edit it, it is the one iwth a paper and pencil icon. If you can Edit and break it up as Keebler asked it would help sooo much in reading.
Lyme brains later on especially have a hard time processing and once it is bunched together like that it simply becomes too much to handle so many will not get through what you posted, move on or just go off on another tangent because they are assuming where you are based on history here....
Hope you dont take it personal just an issue to help you get the responses you truly need.
The EM Rash was my key after many years not knowing what was wrong with me too....
Find an LLMD and keep us updated. We are here to help in anyway we can!
Happy Thanksgiving!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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There are a lot of good books at the library I just went and got some to read. It might help you understand this, It helped me a lot.
And by the way, it all depends what part of the COUNTY you are from and how you say the word Lyme, some use the "S" some don't...You are here to get help not correct your grammer...
Julie
-------------------- Julie Posts: 61 | From Lake Villa IL | Registered: Aug 2007
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Thanks so much for the quick replies. I apologize for the block of text. I didn't know it would be hard for most to read.
The rash did not look too much like the picture that was posted. It was darker in color, very similar to what Von described.
As far as vitamins go, I usually take a multi vite daily.
I did mention having a thyroid test to my doctor, she looked at previous blood work she had done and said there was no problem.
But as with Lyme disease thyroid problems can be very difficult to test for.
I will try to see an LLMD as soon as possible. It is all a matter of getting a referal from my primary doctor.
Wouldn't it be wonderful if most of them were more aggressive in trying to help and didn't assume everyone was a hypochondriac. lol.
Thanks everyone so much for your help. I hope you all have a wonderful thanksgiving.
p.s. Thanks Julie Posts: 42 | From new york | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Tabby, great to hear you got the messages. Thanks for understanding white space. Like you see on these replies will work fine.
(note: I edited a statement above to read - [only because it would be overwhelming and time consuming] not to try to compare your symptoms with everyone elses. Symptoms vary and you are certainly valid to question yours.
First, though be sure you are totally off anything with aspartame (nutrasweet) and MSG. Those products can cause many of these sort of symptoms and that would need to be sorted out. Check the labels of everything, even cough drops, toothpaste.
Gluten, too, in some people can cause many symptoms, so that would be good to check-out.
Sugar tends to feed yeast infections (candida) and other infections as well. If you do eat any sweets, best only after a balanced meal. Fruits with less sugar are apples, berries. Stevia is a plant extract that is very sweet. You can find it in the nutritional section of some groceries or at vitamin stores.
Some may advise to avoid grains altogether. Others cook up grains such as millet, quinoa (keen-wa), buckwheat (from the bean family), wild rice (really a grass) . . . etc. Many stores carry gluten-free "breads" -
Rashes are not all the same. Some are darker, some lighter. Not everyone gets a rash but those who do, most are bullseyes and that is unique to lyme. However, there are other appearances also, so if you don't have a photo, just clear your mind, get some color pencils and draw what you recall.
Rashes of different composition may be present in one or more of the TBD coinfections, too.
Be sure to check with your support group or on the "seeking a doctor" part here for names of doctors near you. After you read the Clinical Advisor article, you will see what treatment with an ILADS doctor or a LLMD means to your success.
If you need a referral, you might copy the Clinical Advisor article from the link and ask your doctor to read it, or take in one or two articles and say, "this sure sounds like it could help me to get this sorted out by someone who has seen thousands of cases."
Articles by doctors hold more weight than those by lay persons. Hopefully, your PCP will work with you. ILADS has many good articles, too.
Not all LLMDs are members of ILADS, but you need to ask before making the appointment if they would be willing to treat according to ILADS treatment guidelines (if warranted by their diagnosis). www.ilads.org - see treatment guidelines.
To simply ask if a doctor treats lyme is not enough. Many will say "yes" only to treat for a week or two, max. Many don't believe lyme lasts longer than that.
Be sure to check as to what type of insurance. And if they take no insurance, you might ask if they have a nurse practicioner (sp?) who may have a lower fee - or other suggestions they might have.
After reading the Clinical Advisor article, you will also see that only certain labs are reliable as are only certain kinds of tests, but all testing has a long way to go. A negative test should not be the only means to dismiss a case. Clinical presentations matter - symptoms and history - based upon the lyme doctor's experience. You can read more at www.igenex.com
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Tabby, sorry, (and Julie, thanks) I did not know that in some parts of the country even doctors say "lymes" - thanks. I do recall one person suggesting that "lymes" may also mean the whole thing, with several co-infectons. Some do add the "s" because they've never read much about it. So, ask, get them taking to see.
You may also know that there are some protocols that employ nutritional or herbal medicines. Thoughts certainly differ across the board here - but I think most would agree that the first step is proper diagnosis and a treatment plan by a LLMD.
If you want, you can explore complementary approaches after you know what you are dealing with. If so, some certainly are more credible than others and this site can help you sort out questions regarding that, too. Many LLMDs are familiar with the best sources, too. Amazon has many of the lyme books, too.
Tabby, if you need anything . . . just ask and folks here will help you figure out how to make it happen (if that's the goal).
Sorry if this is overwhelming, I tend to wonder what all you might find helpful. But I shall turn all this off now.
I hope you can forget all about this for a while today and join family and friends for a wonderful time together. Happy Thanksgiving.
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[ 22. November 2007, 11:15 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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