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Igenex positive but CDC negative & 1 year wait for LLMD

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Posted 8/27/2013 7:05 PM (GMT 0)
So I finally got my igenex results back. According to the dr who did the testing, (NOT a LLMD) it isn't a "flaming" positive. But an Igenex positive nonetheless. Babesia and Bart were both negative (which I don't agree with) and mycoplasma pneumoniae positive.

He wants to treat me for every other health issue I have *before* addressing the lyme. To see if I feel better. And then if I don't feel better in a month, then we will consider addressing the Lyme.

To any seasoned Lyme victims out there, does this sound like a proper approach?
Here's the health concerns he wants to treat first:

Thyroid - rx'ed iodine and armor thyroid
Candida - rx'ed diflucan
Adrenal issues - rx'ed cortef (hydrocortisone)
Low testosterone -rx'ed testosterone cream!!

I should add that none of these issues are major. They are only slightly out of the range of "normal". And according to the dr these are very small and gentle doses.

I am scared to death to take these rx meds!! And I thought I heard or read somewhere that its risky to take steroid meds if you have Lyme. I am starting to get a feeling that this dr might just be trying to get $ out of my desperation to get relief. He didn't say I shouldn't treat the Lyme... Just that he wants to "tweak" some smaller issues to see if I start to feel better. And if I don't feel better then we will talk about Lyme.

Deep in my heart I believe that my exhaustion, head/neck aches and body aches are coming from Lyme (if not bab and Bart as well). But what do you do when you tested positive with igenex and your dr STILL doesn't want to treat it?
I have called two LLMDs in my area (southeastern PA) and they both have a year plus wait list.
I never really want to take matters into my own hands but I just truly don't think the answer is to go on 4-5 rx meds that have nothing to do with Lyme. ANd will lower my immune system plus who knows how else it will tax my already taxed body..So I feel forced to try and take a natural herbal route on my own.

Has anyone ever found success on their own, perhaps while on a wait list to see a good LLMD? I just feel so lost and frustrated.
And yes I have read the new to Lyme detox info.
Thanks for any responses..

Nicole
Posted 8/27/2013 7:10 PM (GMT 0)
That sounds like bullcrap. I too, only have an Igenex positive, no CDC positive. Lucky for me I had the deer tick bite with a physician confirmed EM rash. All of the 'issues' that you listed could definitely be caused by lyme. So putting a band aid on it with medication won't do anything. I have a good LLMD name for you, email me - his waiting list is 2 months as of right now.

The diflucan might not be a bad idea - I would change your diet a little bit if you haven't already and eventually go to a stricter diet specified to help reduce the yeast load.
Posted 8/27/2013 7:15 PM (GMT 0)
Sent you a name!
Posted 8/27/2013 9:07 PM (GMT 0)
Please don't wait to get the tick-borne infections treated - nothing, absolutely nothing good comes from that!!!

Yes, please do be careful with the use of any kind of steroid while you are in need of or getting treatment for Lyme and any other tick-borne infection. The hormone type of steroids are the least offensive for Lyme, but any can likely cause issues.

A good LLMD will treat these other issues anyway as part of the dysfunction caused by the tick-borne infections.
Posted 8/28/2013 1:00 AM (GMT 0)
I absolutely would work on the thyroid issues. The "normal" range for thyroid labs is way too wide. You want your free T3 in the top quarter of the range and your free T4 right at mid-range. TSH will probably need to be 1.0 or lower for you to feel good. Did he check you for thyroid antibodies? Iodine is controversial if you have the antibodies (which indicates Hashimoto's thyroiditis). You will want to chew your Armour before swallowing for better bioavailability.

I would start another thread to see if hydrocortisone is the type of steroid that interferes with Lyme treatment. I'm a newbie so just don't know the answer.

How did he determine you have a yeast issue? Diflucan is one of the more effective yeast treatments but there are other ways to get rid of yeast.

Hormones do need to be in balance so you may want to try the testosterone. I assume he also checked estrogen and progesterone.
Posted 8/28/2013 2:24 AM (GMT 0)
Nicole - I'm brand new to this and I was amazed to read your post b/c my LLMD gave me almost the EXACT SAME treatment plan 2 months ago. My adrenals & thyroids are out of whack, so he prescribed Armour Thyroid and Hydrocortisone (both orally). I started the Armour Thyroid first at 30mg/day and was fine; then I added the Hydrocortisone and my body protested - I blew up like a balloon and could sleep a wink at night. I went off the hydrocortisone within 3 days and was restored someone to sanity. I continued to take the Armour Thyroid, but then when my IgeneX tests came back positive - he added a ton of probiotics and antibiotics ... my bowels went insane within 3 days of adding all the abx (diahhrea) and unfortunately I have no idea what caused it -- the combination of thyroid + abx, or just the abx. Did hydrocortisone play a role? IDK. I've been off EVERYTHING for 4 weeks and just now my gut is starting to be "somewhat normal" -- I truly understand your frustration. I feel like my doctor is an idiot b/c he didn't slowly phase me into all of this by first building up my gut defenses with probiotics and doing abx a little at a time. I actually want to take the abx to kill those like buggers! But my body completely rejected the whole treatment and I am now back to square one.
Sorry if I'm not helping, just know that you are not alone. I knew this would be a process and the doctors, well ... let's just say they are learning as they go. I had to wait months to see mine in VA too. And now I'm considering switching, which will mean more months. It's kinda a racket and omg I've spent a ton of money. Well, we are all learning together :) Blessings....
Posted 8/28/2013 11:33 AM (GMT 0)
Here's what I would do.
If your pretty sure its lyme , based on what you've learned, I'd srart a herbal protocal. Most are immiune system builders that can't hurt.

Don't do what I did and let your doc. put you on any steroids!
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