I have been diagnosed over the past 7 yrs as having Fybromyalgia (sp?), Chronic/ Severe depression, Anxiety (for which I take 4 meds that have been sucessful so far) and recently Chronic Fatigue Syndrome. I believe the Depression/Anxiety diagnosis (family history), but the others I am not so sure about. I know MANY people with Lyme and they have been at me for a year to get tested for Lyme, because so many of my symptoms present the same as a lot of Lyme patients. I went to my HMO doctor who, by the way, does "not believe in Chronic Lyme", he gave me the Western Blot and I tested negative. He had also put me on Doxycycline Hyclate, just in case the test came back positive, "It can't hurt you" , he said. I took it for 1 1/2 wks, within 24 hours I started feeling horrible: flu-like symptoms, transient pain, and then depression starting kicking in! So when he told me I was negative, I quit. A woman I know (her entire family has Lyme) said that I would not have had these reactions with out having Lyme. Is this true? I am still exhausted, have headaches, "brain fog", and some unpredictable and unaccounted for pain. I am going to see a "Lyme's Aware" doctor that my Lyme friends all see on the 28th. My insurance, of course, will NOT cover.
I am confused...any input?
Posted by sixgoofykids (Member # 11141) on :
Did you get a copy of the results of the Western Blot? Mine was Igg positive with 7 positive bands and my doc STILL thought I didn't have it!!
Always get copies of tests like this!
Also, some labs are more sensitive than others.
Your reaction sounds like it could have been a herx. I think it's a very good idea to see an LLMD (Lyme literate medical doctor).
Posted by Lymetoo (Member # 743) on :
You're on the right track!!!! Lyme patients will "herx" on antibiotics. Sounds like that's what happened to you!
As for the negative test, I'm sure your HMO "duck" didn't use a lab like MDL or Igenex. As goofykids mentioned, get a copy of your test. It is your right to obtain it.
quote:Originally posted by EWT1638: I have been diagnosed over the past 7 yrs as having Fybromyalgia (sp?), Chronic/ Severe depression, Anxiety (for which I take 4 meds that have been sucessful so far) and recently Chronic Fatigue Syndrome.
I believe the Depression/Anxiety diagnosis (family history), but the others I am not so sure about. I know MANY people with Lyme and they have been at me for a year to get tested for Lyme, because so many of my symptoms present the same as a lot of Lyme patients.
I went to my HMO doctor who, by the way, does "not believe in Chronic Lyme", he gave me the Western Blot and I tested negative. He had also put me on Doxycycline Hyclate, just in case the test came back positive, "It can't hurt you" , he said.
I took it for 1 1/2 wks, within 24 hours I started feeling horrible: flu-like symptoms, transient pain, and then depression starting kicking in! So when he told me I was negative, I quit. A woman I know (her entire family has Lyme) said that I would not have had these reactions with out having Lyme.
Is this true? I am still exhausted, have headaches, "brain fog", and some unpredictable and unaccounted for pain. I am going to see a "Lyme's Aware" doctor that my Lyme friends all see on the 28th. My insurance, of course, will NOT cover.
I am confused...any input?
I copyed your post and broke it up for us chronic lymies can read.
To answer you....
It sounds like you are herxing (please read newbie help links) Herxing is an increase in symptoms (so more pain) while on abx (antibiotics)
You should see a LLMD and get treated properly. A few weeks of doxy is only going to bring out the infection and then leave you hanging.
Many people need years of abx to get better along with herbs and heavy metal removal.
Good luck, Lisi
[ 07. March 2007, 07:15 PM: Message edited by: Lisianthus ]
Posted by Michelle M (Member # 7200) on :
Your friends are correct...
Good friends to have!! They're looking out for you!
LymeToo is right - a lot depends on the lab. In one peer-reviewed study of various labs' ability to detect lyme, 16 out of 18 positive samples were reported as 'negative!' Please only use a lab that specializes in tickborne diseases, such as IGeneX.
Your herxheimer reaction says a LOT diagnostically.
The diagnoses you've been given only really speak to the effects of lyme (fibro, CFS, etc.). They do not address the cause, which is bacterial infection and possibly co-infections.
An LLMD will know more in his little finger than the rest of your docs. There are dozens of studies documenting beyond the shadow of a doubt the ability of the bacteria to persist despite antibiotic treatment. Why mainstream doctors are apparently unable to read these studies is a mystery.
Good luck with your LLMD appointment and keep us posted.
Michelle
Posted by von (Member # 8333) on :
[/QB] I took it for 1 1/2 wks, within 24 hours I started feeling horrible: flu-like symptoms, transient pain, and then depression starting kicking in! A woman I know said that I would not have had these reactions with out having Lyme. Is this true?
[/QUOTE]
Yep..... sorry.
To have that kind of reaction, you must have been killing something bacterial. (Lyme? Co-infection?)
Sounds very typical from your description. You start out with these symptoms, you take an antibiotic, and you feel worse with increased/similar symptoms.
Many people at this point think they are allergic/sensitive to the antibiotic itself. (which is possible, but under the circumstances, very unlikely)
Some, get a rash with antibiotics, which many think is allergic.... but it is not. A secondary EM and/or herx reaction.
Treatment for lyme is a long road, but there is hope. Get yourself to someone that knows lyme. There are options.
Sometimes you have to start out real slow to lower your germ load. Like a real low dose antibiotic.
Keep us posted.
Von
P.S. I also have a family history of depression, and have had a few bouts of it before lyme.
The first several months of my illness I was convinced that I was depressed.
I put myself in therapy and my MD increased my antidepressent.
IF YOU HAVE A FAMILY HISTORY OF DEPRESSION:
You can still have lyme.
AND lyme can increase you depression.
[ 06. March 2007, 12:26 AM: Message edited by: von ]
Posted by mag (Member # 8920) on :
hi ew,
you are in the right place--- lots of support and good information ---- and heading to the right physician "LLMD" Good for you !!!
I agree - it sounds like you have had a massive response to the abx - which is so common for Lyme sufferers
And the anxiety is typical with lyme Hope your appt goes well - bring all your reports to the llmd and keep us posted !!
Posted by panicbegone (Member # 10760) on :
if you need someone to chat with just send me a private message...its not always that common finding someone w/ anxiety problems. There are some out there but that is one of my biiig symptoms. I have 20+ symptoms, a negative elisa test and positive igenex. i have also received cfs/fibro diagnosis. Your health is worth it....go with your gut...i am giving antibiotics a try although not with very good luck so far. Take care
Posted by EWT1638 (Member # 11315) on :
Thank you to everyone who replied, you all are great encouragers. I have asked for a copy of my neg Western Blot test and I also spoke with my HMO doc, who said, "That if the specialist tests me positive (sends him a letter), he will copy the prescription for me so that I can go through my insurance company for the abx." I hope that both doctors will cooperate with this arrangement.
It is funny how people (not Lymies) will suggest that you "get a job" to pay for medical costs. I had to quit homeschooling because of this illness, what makes them believe I could somehow be reliable (health wise) to make it/be productive to a "job" everyday? (I intend to get a part-time job as soon as I am well enough again.)
Q: What do any of you know about the CD57 test? It seems to have been useful for some long term CL patients who test negative on every other test around this area. We call Loudoun County VA, "Lyme Central".
Blessings!
Posted by Lymetoo (Member # 743) on :
That's great if your HMO dr will do that for you. I'm a little suspicious that he just wants to know the name of your future Lyme dr though!!
Ducks have been known to report our drs to the insurance companies or medical boards. Go with your instincts on this.
I don't think that much of the CD57. There have been polls here which showed test results from 5 to 300... with all of them being Lyme patients who were still sick.
Let us know when you get your appointment with that LLMD! Posted by von (Member # 8333) on :
'all you wanted to know about the CD-57 test and were to sick to ask'
The CD-57 test is another tool. I think it is a good one. Not great. Gives some clues though.
It is an inexpensive test, and if you do it, make sure you do it through labcorp. They have their calculations so that you can compare apples to apples.
Labcorp also is contracted as a prefered provider with some insurance companies, so that makes it a little more affordable.
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