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05/03/2010 05:32 AM

disappointed in Doxycycline

erin2g
 
Posts: 82
Member

I am almost done with my 2 week of Doxycycline. I thought it would have improved symptoms 25%. Would have been thrilled with 5% improvement. NO CHANGE AT ALL!!

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I know the ID MD said your symptoms wouldn't go away in 2 weeks, even he knew! But no change is upsetting. It is just proof that the IDSA's magical 2 week of Doxycycline is crap. "Clinical proven trials" of 2 weeks is crap!

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The hot weather the last two days have just amplified the worse of everything, I think that's why I am so upset. And you'd think the "believing" in the antibiotic working ( the placebo effect) would have made a difference?? I wish.

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Two weeks wasn't enough. Something is better then nothing. It made me so sick to my stomach, threw up many times. (Crackers helped alot.) But I really thought it would have made a slight difference.

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Still waiting to see when the ID MD is putting me on the PICC line. Still hope!

Post edited by: erin2g, at: 05/03/2010 05:33 AM

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05/03/2010 09:13 AM
erin2g
 
Posts: 82
Member

ID MD called a few min. ago to say he discussed with the neurologist his thoughts and further testing. It seems to me that his opinion changed a bit from chronic Lyme back to maybe early infection and the Doxycycline should have showed some improvement.

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And wants to explore more on a fact it may be something else causing my symptoms. It was almost like he was influenced on changing his mind. Wants to wait now on putting me on the PICC line till after MRI and Spinal tap.

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**After reading university of columbia- lyme info. Maybe there will be the proof they need to treat either Neuro-lyme symptoms with IV antibiotics. Or just symptoms of some other disease they decide that Lyme mimics.

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In meanwhile I expressed my extreme concern that I was not going to get the right treatment because things are getting much worse too quickly. If I don't get the help fast, I know it is going to be too late.

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I have tremors pretty bad today, and it brings me to tears, and makes me feel like I am ignored and left to fend for myself. Even though the ID MD tried to reassure me that we are going to get to the bottom of this.

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But I can't forget that it was the same Neuro that gave me antidepressants when the nerve conduction study came out fine instead of further testing. Now my IgG came bake positive with only 1 band (not CDC +) but as everyone knows the chances of late Lyme and reliable tests.

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What are they waiting for, My autopsy to say, yea I guess she had extensive damage from Lyme? (I know that's a little over dramatic.)

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I do appreciate the fact that the ID MD himself has called me multiple times ( and not a nurse), that shows me that it is important to him to help me ( and I'm not just a $ to him), and I pray to God that he makes the right choices, because he is the only MD that has gone over and beyond all of the others with concern.


05/03/2010 09:26 AM
LymeGirl1
LymeGirl1  
Posts: 46
Member

Erin,

Did you see "under our skin" the movie?

While I'm sue that your ID DR is a kind good man, there are tremendous

forces of politics involved with a Chronic Lyme DX.

He may be put in a position to choose your patient care over his career and livelihood. With all that at stake he may not be able

to make the best desition for YOU.

I know. I've seen an ID Dr, and had I followed his advice, I would be

dead now.

There are some good people out there caught up in a situation far

bigger than they can take on.

You may be with the right Dr for you, but just keep both eyes open.

Just because someone is kind, doesn't mean you should bet your life on it. Go with your gut.

I hope you can find an LLMD, to at least get a second opinion.

I'm sorry if I've sounded unkind. I just know where you are and

want to offer an outside view.

If you do have Late Stage or Chronic Lyme, 2 weeks of doxy won't touch it. You will be in this for the long haul.

Take care. All the best on your fight!!


05/03/2010 09:56 AM
erin2g
 
Posts: 82
Member

Thanks, I haven,t had the chance to see the movie ( the audio isn't working on the computer can't figure it out).

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The last conversation I had with him, he said chronic Lyme and he was definitely putting me on IV, ASAP. And he said he wants to call the Neuro to run further tests and get back to me. Now he said he is going to wait till after the tests are done to make sure.

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I think he is still considering it, and after reading I agree to wait till after. I just hope no one influenced him to not do the IV antibiotics at all.

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But still in my defence if that comes up, it does say if neuro symptoms persist they still can do the IV antibiotics based on symptoms alone. I know even that is not enough, but I can further self treat with natural antibiotics.

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I think the opportunity of having the IV first would overall improve the chances of beating this if I hit it at all angles.

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We are so broke, a family of 6 and about to lose the house if the finances don't change fast. We are a few $ above to get financial help. There is no way I can see a LLMD. I am almost ready to submit the SSDI claim, just want to make sure I don't forget anything.

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It seem like every time I start to see some bit of HOPE it gets stomped on!

Post edited by: erin2g, at: 05/03/2010 10:07 AM


05/03/2010 10:41 AM
zenducation
zenducation  
Posts: 193
Member

Do you have insurance? I know not many LLMD's accept insurance, but mine did.

05/03/2010 11:28 AM
erin2g
 
Posts: 82
Member

I have Blue cross blue shield PPO, can get medicaid, need to re fill that out ( they lost my info)

05/03/2010 11:39 AM
Paschalltwin
Paschalltwin  
Posts: 199
Member

I didn't have luck with Doxy either, but I was on it for 7 months. Doxy does help a lot of people, but not me. It sounds like your ID M.D. was influenced. That just burns me up!

05/03/2010 11:42 AM
zoemajik
zoemajik  
Posts: 666
Member

Hi Erin Smile

I understand you're still seeing the ID doc because you can't afford an LLMD. I would take Zen's advice if you haven't called already - and see if any LLMDs near you take your insurance.

3 weeks of doxy can be hit or miss with new infections - highly unlikely you'd be feeling better at this point taking that. Look at Dr. B's guidelines for antibiotics - oral and IV - and mention some of those (not the list) at your next visit. If you're getting abx from a clueless doc you need to make sure you're getting a good one for Lyme.

Supplementation and natural antibiotics have given me relief as well as the conventional ones - so definitely another option.

I sent you some resources that may help you $$ wise.

I get your frustration. I hope things improve for your family soon so that you can get the health care you need ((hugs))

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