Feeling helpless with Lyme or not??

Hi Tickled!
Welcome to our community! I'm so glad you found us.

And it seems you picked a good time to join us! We just had another member return after having more children and is dealing with the same situation. You can read their post here: www.healingwell.com/community/default.aspx?f=30&m=3753385

I too had a set back after the birth of my children, and after the second one, that was all my poor body could take and I started really having issues. I haven't been able to work since then, really - even though I did keep trying for a few more years. It's no secret that pregnancy is hard on a woman's body, but when you are ill, it's so much worse!

These infections are supposed to be diagnosed by the clinical signs and symptoms, not by the tests alone. This is from the CDC: "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods."
/www.cdc.gov/lyme/

And some states have passed laws requiring doctors to tell their patients that just because a Lyme test comes back negative, it does NOT rule out the person having Lyme. This is because the testing is really bad. A negative result does not mean that you don't have the infection, many have the infection but don't have a strong enough immune system to produce the required antibodies for the test to be positive. Co-infection testing is just as bad, if not worse.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

For effective treatments, you will need to seek out a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area. To do this, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf

No, the only people that are cured after just 4 weeks of Doxy have caught the infection within days of it starting from what I've seen in my time of being involved with Lyme. ILADS states that it takes 6- 8 weeks of treatment for the earliest stages of Lyme.

I would have to say that no, you were not treated long enough in 2009 to have healed from it.

Band 23 is a Lyme specific band - A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Hang in there!! Read all you can on here and on other reliable sources of information - you can ask here if you should believe what's being said, or see if others have already talked about that topic by using our search function at the top of every page.

You also are not alone in this!!! We have a lot of members on this forum and we do try to help each other out, provide support and answers to questions any time we can - and you are a part of this now!!