I was diagnosed with Lyme about 5 years ago. I started getting horrible chest pains but that was pretty much it. It took about 2 weeks or so for the doctor to test me for lyme. I was put on doxcycycine which was suppose to cure it. Since them i have had what i call "lyme attacks" where i get sick, if i let it go i get really sick. Mainly severe fatigue. There was one instance where i didn't leave my bed for about 2 weeks. when i start to feel "out of it" i go back on doxy. This helps for like a month. I nearly always have a foggy head, it seems like i have to remember how to think. Sometimes it gets so bad i have to think about simple things, like how to eat. Since i constantly complain of things like fatigue, cloudy head, joint pain nobody seems to think i'm telling the truth, but it has become constant in my life and seems to progress rather then get better. I have been on doxy so many times, i don't know how it could still be effecting me. If anyone else has had this problem please let me know i would apprectiate it.
Posted by sixgoofykids (Member # 11141) on :
Yes!! The problem is, Lyme needs long term treatment in some cases. Please find a Lyme specialist by posting in the seeking doctors section of this site.
With long term treatment, you can get better. No one believed me either ... except for hubby and kids who had to live with my illness.
www.underourskin.com Check out the trailer.
Posted by BHealthyNow (Member # 22537) on :
I haven't been treated yet, but I have read about this happening. Hopefully someone can give you some links.
Are you seeing an LLMD?
Also, someone will post about breaking up text.
I didn't realize how important it was until I noticed how much easier to read double spaced.
Posted by sixgoofykids (Member # 11141) on :
Yes, Lymies with bad neurological symptoms cannot read text that is not broken up. I myself could not read books for two years! Breaking up the text:
I was diagnosed with Lyme about 5 years ago. I started getting horrible chest pains but that was pretty much it. It took about 2 weeks or so for the doctor to test me for lyme.
I was put on doxcycycine which was suppose to cure it. Since them i have had what i call "lyme attacks" where i get sick, if i let it go i get really sick. Mainly severe fatigue.
There was one instance where i didn't leave my bed for about 2 weeks. when i start to feel "out of it" i go back on doxy. This helps for like a month. I nearly always have a foggy head, it seems like i have to remember how to think.
Sometimes it gets so bad i have to think about simple things, like how to eat. Since i constantly complain of things like fatigue, cloudy head, joint pain nobody seems to think i'm telling the truth, but it has become constant in my life and seems to progress rather then get better.
I have been on doxy so many times, i don't know how it could still be effecting me. If anyone else has had this problem please let me know i would apprectiate it.
Posted by KGS104 (Member # 22601) on :
I am trying to see an infectious disease specialist i just got insurance so that i can go. I also have been known to have horrible mood swings, i can cry over things that wouldn't make someone cry, or get so angry over a nothing. I have been taking it out on my family and i read that it could be lyme but have you ever experianced it?
Posted by KGS104 (Member # 22601) on :
I am trying to see an infectious disease specialist
i just got insurance so that i can go. I also have been known to have horrible mood swings,
i can cry over things that wouldn't make someone cry, or get so angry over a nothing.
I have been taking it out on my family and i read that it could be lyme
but have you ever experianced it?
Posted by sixgoofykids (Member # 11141) on :
Yes, I have experiences a lot of that.
Most likely an infectious disease doctor will be no help. Please see the trailer at www.underourskin.com
It's important to know about the controversy surrounding Lyme.
Posted by bettyg (Member # 6147) on :
104, welcome
please edit your 1st continuous post and break it up into MANY, SHORT paragraphs and double space between each paragraph for us neuro lyme folks who can't read or comprehend what you have typed. huge thanks
use my guidelines below....
also noticed you had a double identical post; 1st continuous and next one broken up.
on the continuous one, here is how you can delete that one ok.
go to the continuous one, click pencil, 3rd box to right of your name,
go to top left corner click delete post; gone thx
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
Posted by AliG (Member # 9734) on :
Your Dr. went from "chest pain" to "possible Lyme disease"??? Did you have a known tick bite or bulls-eye rash?
As for your symptoms.....BTDT. They are VERY common in Neurological Lyme.
What dose of Doxy were you being Txd with, 200mg? If so, that's considered a bacteriostatic dose and won't actually kill the Lyme.
It relies on your immune system to kill it. Doxy isn't bactericidal under 300 mg.
Lyme disease symptom flares and herxheimer reactions tend to have a cyclical nature. Bb has a replication cycle of about 28 days.
If you read "Psychiatric Lyme Disease - What psychiatrists should know about Lyme/tick-borne diseases", you'll probably find what you're experiencing there.
They also have some newer brochures, with one being for Primary Care Physicians.
If your PCP keeps Rxing Doxy for you, they must be pretty progressive. Many won't even attempt to retreat after one course.
You might want to print the ILADS brochure, the ILADS guidelines and Dr.B's Diagnostic Hints & Treatment Tips and bring them to your physician.
Have you ever been tested for co-infections? Many PCPs don't even think to test for them.
You're definitely not alone in the symptoms you're experiencing.
Ali
Posted by 22dreams (Member # 17846) on :
Note about chest pain:
One of my sister's went to the ER b/c of chest pain recently.
Turns out it was long QT interval.
The ER doc stated she has only seen it with a genetic cause or with lyme.
Of course, from what I gather, lyme can set off genetic predispositions ("weaknesses") while a person is infected (i.e. RA, thyroiditis, et al).
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