posted
Hi, I am in need of some insight. I have had headaches since November which have lessened. My new symptoms are god awful fatigue and a feeling that my skin is burning. I have every blood tests known to man and scans as well. Can you still have negative Lymes titers x 2 and all bands negative and still possibly have lymes. This skin burning is awful I am going back to doc tomorrow and I am at wits end. I am a nurse and I know I am not making these symptoms up, any suggestions. Thanks so much.
Posts: 5 | From Maryland | Registered: Jun 2011
| IP: Logged |
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, the Quest and LabCorp lyme tests are useless, so many people with lyme get negative tests from these labs, over and over again.
Your symptoms could definitely be lyme. But, it is going to cost you some money to see a lyme doc and get tested by a tick borne disease specialty lab--Igenex. $200 just for lyme test through Igenex (they don't take insurance, but do take Medicare) and a lyme doc costs even more. The good ones don't take insurance, very, very few exceptions to that rule.
Igenex finds many, many more cases of lyme disease, and they also test for the other tick borne diseases that you get along with the lyme--the so-called coinfections. Everyone in Maryland with lyme also has babesiosis and bartonella, so if it is lyme, you will need treated for all 3.
If you are still interested, let me know and I'll give you the names of some in Maryland who are very good.
It is totally typical for someone with lyme to have all normal blood tests and other tests as well, such as scans, colonoscopies, etc. That's why it took 10 years for me to get my lyme diagnosis. Doctors kept yelling at me that I was normal!! couldn't be more normal!! that I was not sick!! Did I hear them?!!!
Right. I couldn't hold my mouth open to have my teeth cleaned, couldn't hold a phone to my ear for more than 30 seconds, dreaded having to rise up from a chair, etc. due to extreme muscle weakness all over my body that went on undiagnosed for year after year. Plus, horrendous fatigue. But, all my blood work was perfectly normal.
And, many, many people are told they have fibromyalgia or chronic fatigue and just carry on for years. But, they really have lyme disease and need antibiotics.
We just don't have any really good lyme tests, so you need to go to a doc who specializes in lyme and he looks at all the evidence, especially your symptoms, and decides if you do or not. In other words, lyme is a clinical diagnosis. That is not my opinion but the opinion of the most famous lyme doctor and lyme disease pioneer on the planet, Dr. Joseph Burrascano.
"DIAGNOSTIC HINTS
Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
I suggest you read and study the entire document. Look at pages 9-10 for a list of symptoms. I know the burning skin one. It is definitely awful.
Also, a Boston TV station did a great show on lyme disease about 2-3 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
I completed my lyme treatment 6 years ago and I am still symptom free, enjoying my life. Let me know if you want some doctors' names. And, good for you for finding LymeNet and considering lyme disease.
I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Hi,\thanks so much. I live in Maryland so I would love the names of doctors who specialize in Lymes. Can I order the test from Igenex and have it done and pay out of pocket? I am burning up today I don't know how much longer I can take this. Why is it that docs will give pain killers, anti anxiety agents you name it but won't give an antibiotic?? frustrating.
Deanna
Posts: 5 | From Maryland | Registered: Jun 2011
| IP: Logged |
posted
That's what we're ALL wondering, deanna!!!! What's the big deal with antibiotics???
Yes, order the kit from Igenex (free) . then get the bloodwork done (early in the week) and send it in with a doctor's signature. When you send it in, you send in the payment. It's around $200 for the Western Blot.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic