Discouraged/Doc Ordered EKG/FMLA Concerns

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CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 86
   Posted 1/5/2018 12:26 AM (GMT -6)   
I have only been on Doxy for about 3 weeks and thus far, I am only able to tolerate 100mg per day. When I take 200mg I puke, have burning, joint/back pain, insomnia, and a strange heavy feeling all over. I am doing daily detox treatments (epsom baths, Chlorella, lemon water, tried alka seltzer gold). My hair is so tangled and dry, I can't even run a brush through it. I just don't feel like I want to continue treatment, but I know that not continuing isn't an option either. I feel hopeless, and like I will never get better. We haven't even addressed the co-infections/cyst busters yet, and according to my doc, rifampin is a seriously strong antibiotic. I know it's early, but I can't see myself tolerating anymore than the tiny amount of Doxy I'm on and I feel like giving up. I still look young, but I swear I looked twice my age in holiday photos. I honestly don't even recognize myself anymore. I looked forward to starting treatments with the hope that I would notice an improvement, but it is starting to sink in that some of this may not be reversible, and that is really tough. The collagen loss and joint pain are on the level of my mom's in her 70s. As someone in their 30s, it's hard to imagine what life will look like when I'm elderly. My friend told me her friend is "cured" from Lyme, but their personality has never been the same. I know it's still early, I'm just feeling very discouraged.

My doctor also is unwilling to continue working with me until I get an EKG, has anyone else been required to get one? He is also recommending that I get my PCP (totally clueless) to order an EKG and bartonella tests, has anyone ever had bart diagnosed through a PCP? I thought the testing for co-infections was just as poor as Lyme tests.

My doctor also completed my FMLA/STD paperwork (listed my symptoms and a spirochete infection as my diagnosis), but stated that if the insurance company digs, he is not going to cooperate and does not want to jeopardize his practice. He made it seem like he is taking a big risk and going out on a limb for me for completing that paperwork on my behalf. I haven't heard from anyone here that any of their doctors have been given any trouble, is he just being paranoid?

Post Edited (CatLady18) : 1/4/2018 11:39:09 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32609
   Posted 1/5/2018 1:25 AM (GMT -6)   
CatLady - are you taking the doxy with food? Eat some food, take the doxy and then finish your meal.
See if that helps you tolerate it.
The dose is actually 400 mg daily.

Do you take a binder for detox? That might be something to try. But it needs to be taken a couple hours away from your abx, supplements, etc. And with a full glass of water.

Rifampin never bothered me...I was concerned about it so I started with half a capsule - I opened up the 300 mg capsule and poured it onto a piece of paper. I filled an empty capsule with approximately half of the powder. I took approximately 150 mg for several days (I think about 4 or 5 days) before going to 300 mg per day. After a few weeks, I went to full dose of 300 mg twice daily.

Doxy is one of the hardest on the GI.

I would get the EKG - it isn't an invasive test.
If you're going to get tested for bart, I would do that with a lab that specializes in tick-born disease testing.
Although, maybe the one the PCP is offering would be no cost to you?
If insurance is covering it, then it's worth a try.

Actually the co-infections seem to be even more unreliable/inaccurate than lyme testing.

I have heard of some LLMD's being concerned.
That is why many do not take insurance.

Can you have a discussion with your LLMD about trying something other than doxy. (if you still can't tolerate it after several more days on it)
There are other options. In the same classe, there is minocycline. Or from other classes - there's Ceftin or Omnicef....or biaxin...azithromycin.
All of them can be paired with Rifampin.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2108
   Posted 1/5/2018 3:32 AM (GMT -6)   
Hi and sorry you are going through this and are feeling discouraged.

With treatment things can get better but it does take time and trying many different paths for some of us.

If you still feel uneasy about how your llmd is treating I would seek out a new llmd or herbalist.

Some of us have had to do that and its ok, you want to get the best treatment and not delay treatment.

There are many success stories here and you can do a search for them and its so good to read that others have healed .

My hair was brittle and breaking off and my skin had changes too that made me feel awful, but it has gotten much better.

Make sure you are taking something for collagen replacement every day.

Take care and hope you get some relief soon, Jo

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 1/5/2018 11:38 AM (GMT -6)   
CatLady, pcp stands for Primary Care Physician or your regular doctor.

The EKG is done in the docs office and they just put these little pads on your chest to check out your heart. No pain, no pokes and you don't have to get totally naked. LOL

If you are having any kind of heart palpitations or flutters or you have never had one, it is just a precautionary thing. Don't worry about this one.

As for the bartonella test, I would ask the doctor what are the statistics for reliability of the test. Ask what lab will be doing the test.

The general consensus on this forum is that testing for co infections is highly unreliable.

As for the old lady look - goshawk advised collagen and I totally am in agreement with that! For the hair and nails I used Biosil. I think the collagen will help, but if you feel you need extra I think a good gelatin would be less expensive than Biosil and do the same thing.

In the grocery store they have gelatin packets. On Amazon there is an organic gelatin. Easy to put in a smoothie. You will love your hair and nails after using gelatin.

But use a good conditioner always. You can even use coconut oil SPARINGLY. It will moisturize your hair shaft and get down into the follicle.

I had hair down below my waist and I used a detangler. You can find organic unscented ones, but they are pricey.
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