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On abx and feeling better so do I really need an LLMD?

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Posted 6/19/2015 2:52 AM (GMT 0)
Hi all,

I shared my story in another thread but to summarize - I was diagnosed with Lyme after 5 days of aches, fever and chills and a bulls eye rash which developed the 4th day. Before that I noticed some memory fog issues as well. I am taking a 21-day course of doxy and am now on day 10 and I feel great. I don't want to jinx myself but I feel pretty much back to my old self again. However, I can't shake the feeling,based on the limited research I've done both here and elsewhere, that the course of abx is insufficient and I should be taking more. The dose is 200 mg daily by the way. I don't want to go to another dr if I don't have to but I also don't want to risk having this go under treated and develop into something more chronic. I'm leaning towards going to an LLMD for a second opinion on my tx but want to know if you all think that's necessary - bc to people like my husband it sounds a little bit over the top. :) tell me what you would do pls! Thx!
Posted 6/19/2015 3:28 AM (GMT 0)
Well, this might seem obvious, but you feel better because you're on treatment.

So, first, the recommended amount of time to be placed on abx (short term) is one month, so you're on too short a regimen already.

Secondly, most cases of Lyme do not resolve on one course of abx unless you treat right away, as soon as you see the tick and the rash (i.e. within 24-48 hours of the bite).

Finally, Lyme is a remitting and relapsing disease, which means it flares, goes into hiding, and then flares again.

So after you have finished your course of abx, assuming you still feel great, the bacteria that causes Lyme can come back out of hiding.

Borrelia Burgdorferi (the bacteria that causes Lyme) resides in an encysted form in your body. Even the smallest shock or illness can trigger the bacteria to become active again. Some doctors understand this, and others don't

While you could take a wait and see attitude once you finish your abx, you run the risk of having more reactions to the drugs once you reinstate them.

A good LLMD will not push you to take drugs if you are unwilling. LLMDs are expensive and do not take insurance (for the most part), so you need to use your own best judgment.

Margaret

M
Posted 6/19/2015 11:28 AM (GMT 0)
Margaret did a great job of explaining things.

My signature tells my story.

To expand a bit on that, I had NO symptoms after the tick bite but I'd learned enough about Lyme to know to ask my PCP for some doxycycline.

I developed a stiff neck the 2nd day on doxy and it passed quickly.

about 10 days after I finished the doxy, I noticed a weird sensation in one toe along with a fluid-retention type feeling in my legs. These symptoms certainly weren't alarming but they weren't normal for me and I got to wondering.

Just as your gut is telling you to seek a LLMD, mine told me to do the same.

Please see a LLMD as soon as you can. Lyme and Co's are not to be taken lightly and not getting adequate treatment can lead to a lifetime of misery.

ILADS (International Lyme and Associated Diseases Society) have established treatment guidelines that are more realistic than IDSA's.

They have a doctor-find resource in the contact section on their site (that's how I found my LLMD). I hope you avail yourself of it:

ilads.org/ilads_media/physician-referral/

Oh, I also suggest that you and your husband watch "Under Our Skin" that can be found on YouTube. He will most likely change his tune.
Posted 6/19/2015 1:04 PM (GMT 0)
~Foodiegirl

Please read this thread... and then listen to your own instincts... you are the only one that has to live with your body.


www.healingwell.com/community/default.aspx?f=30&m=3429010

It took a bit to track down this thread... i hope it helps you to make the best decision for your well being.
Posted 6/19/2015 1:13 PM (GMT 0)
I think another part of it is how your immune system responds to the remaining bugs after the antibiotics are finished. I'm on day 13 of doxy and i feel pretty much "normal" too. I'm not sure when i'll finish or if i'll switch to something else. I've been tempted to jump to cat's claw for a more long term treatment.... or even pulse antibiotics a few times.
Posted 6/19/2015 3:13 PM (GMT 0)
Foodie, I would still recommend continued treatment to ensure your success in properly healing. You will have to be the one to decide on which treatment route is the best for you, herbal - abx. I have an old family friend, found a wood tick on him, removed, went to dr, tested postive, 1 mo of abx, felt better and then it came back terrible he said, then went to a Lyme Clinic in Kansas City, 3 more months of abx and never felt good again, his amazing wife found him a holistic practitioner that made some sort of tincture(he never told me what it was) and he still uses when he has relapses. He was bitten in '95. He just told me this story a week ago or so and said he had just recently ordered some more drops from her.
Not trying to scare you...just trying to be helpful!

Blessings,

Iheartx
Posted 6/20/2015 2:55 AM (GMT 0)
Thanks so much to everyone who responded. I really appreciate the time you took to hell me make this decision. I am going to watch the documentary and will read the thread posted here thus weekend. I am definitely leaning towards trying an LLMD. I already contacted ILADS and received three recommendations but I would like to get names from people here too so I'll post about that next.

One other quick question - llmds arent reluctant to prescribe abx are they? Assuming they will use abx and other medications, both herbal and otherwise, right? Part of the reason I'm considering going to an LLMD is to get a second opinion on tx and specifically the tx course of abx I was given. Thank you!
Posted 6/20/2015 3:04 AM (GMT 0)
No, LLMD's aren't reluctant to prescribe antibioitics. (Unless, of course you have a bad reaction/allergy to the antibioitics)
Posted 6/20/2015 3:21 PM (GMT 0)
I believe your dose needs to be 400 mg daily to kill it off, I believe 200 just keeps it from replicating. I would ask the doctor for more, 6 weeks worth at 400mg and then see how you are doing.

Hope somebody else didn't say the same thing, I just skimmed other replies.
Posted 6/20/2015 4:34 PM (GMT 0)
Thx, Revive, that helps. I don't think my dr will give me more because she told me that she usually just gives twelve days and that the 21 days that the ER dr prescribes is "overkill" so it looks like I will need an LLMD for an increased dose.
Posted 6/20/2015 7:42 PM (GMT 0)
Or you can do some kind of herbals along with your antibiotics.
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