Post Lyme Disease

iw.matheson

New Member

Joined : Nov 2009

Posts : 2

Posted 11/24/2009 8:06 PM (GMT 0)

Hi,

I was diagnosed with Lyme Disease after about 8 weeks of having it. I was having really severe mood swings, anxiety and so on. I was given a one Month Course of DoxyCyclin and had blood tests, the first set came back inconclusive but the second set came back clear and negative. After now 13 weeks since contracting the Lyme Disease and 2 weeks being off antibiotics I am still not sleeping very well at all, becoming very tired very easily and still feeling very down in myself.

Can anyone suggest seen as my test results came back clear not showing Lyme Disease why I am still feeling this dreadful

Thanks

Willowrose

Veteran Member

Joined : Oct 2009

Posts : 699

Posted 11/25/2009 2:47 AM (GMT 0)

Hi iw.matheson. Welcome to the Lyme forum. Sorry I don't know more about the topic of your question, but I wanted to respond to your thread. You might get some of the information you are looking for by reading the very first post in this forum for new people. Some possibilities for explaining what you describe: you may not actually be rid of the lyme, it may have gone into hiding and that is why your test is negative. You may have an undiagnosed coinfection (very common) which is causing your symptoms because they are not treated with the same meds as Lyme. I'm sure there are other possibilities, too. If I were in your position I would not accept those results. If you still feel sick, I'd think that is your body's way of telling you you are still sick. If your doctor is not a Lyme specialist, it would be a good idea to find one. If your doctor is a Lyme specialist, you should already have been tested for coinfections. That being said, just because you test negative doesn't mean you don't have them. Lyme can suppress your immune system - but if youhad a positive Lyme test, I would think that means your immune system was working well enough for you to create antibodies which would mean your coinfection tests would more likely be positive too.

If you do not have a Lyme specialist, you can get a link to referral services on the new to lyme post. After spending in excess of ten years hearing doctors tell me I'm fine when I felt awful (and they were wrong), the one thing I would not suggest is that you ignore this. Good luck finding out what is causing your problem. I hope you are feeling better soon.

Rose

CajunGrl

Veteran Member

Joined : Mar 2009

Posts : 4717

Posted 11/25/2009 4:46 AM (GMT 0)

Hi iw.matheson,

Welcome to the forum!

I'm so sorry your are still feeling sick. The recommended dose for Doxycycline is at least 400mg for no less than six weeks for an early infection.

Here is a explaination of dosing from the ILADS site:

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

Here is the URL. Please read it and get yourself educated about this disease so you don't suffer years from now.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You may also have a co-infection like Rose stated above. Severe mood swings and anxiety could be Bartonella. In the thread at the top of the Lyme forum page titled, "New To Lyme?....Start Here!", there is a listing of co-infections and their symptoms.

You may also want to find a Lyme Literate Medical Doctor. Most regular doctors do not know how to treat this disease, let alone read the Lyme test. Here is some information to help you find a good doctor:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
[email protected]

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The
ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.

Traveler

Elite Member

Joined : May 2007

Posts : 36573

Posted 11/25/2009 4:59 AM (GMT 0)

Hi iw!!
Welcome to the HW Lyme forum. You will find a great deal of info here. The best place to start is the thread at the top of the forum, entitled "New to Lyme? Start here". It's packed with good basic info!

As to your question, is the doctor you saw "Lyme Literate"? Do you know what lab your blood works was sent to? Can you get a copy of the results? These are things that we can help you to understand, which will enable you to be your own health advocate. I believe that this is vital for all who have tick-borne illnesses.

It is generally believed - from what I have read- that a 2 month course of Doxy at (and I'm a little fuzzy here

) 200 - 300 mg per day - I believe. I know there are others here who have much better working brains, so I'll leave it to them to help me get the dosage correct!

The best thing you can do now is to educate yourself. It does sound like to me - as Willow stated- that you sound as if you were under-treated possibly. It has happened to a lot of us.

~ Trav

Traveler

Elite Member

Joined : May 2007

Posts : 36573

Posted 11/25/2009 5:03 AM (GMT 0)

Oops!!!