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1322693 tn?1308153896

Finally on antibiotics

I just wanted to update all as I have been gone for a while. I had been seeing a Neurologist who seemed to be pushing the Lyme dx. My Western Blot came back CDC negative (only 2 bands showing).

She basically shrugged her shoulders and said that she had no clue and good luck. So frustrating. Soon after that I lost my unemployment and have still not found a job. It has been an emotional roller-coaster for the last couple months.

Anyhow, I set an appt with my Primary because even though she may not be able to help me with somethings she always is up to a referral to whoever I need.

She walked into the little room and her first comment was "How long have you been tired?" That woman can read my eyes. :)

She then started going through all of my recent tests and asked about what my NL said. When I explained her question about Lyme and her interpretation of results my PCP simply said that 2 bands were enough for her and wrote me a script. Starting me on Doxy (I hate the sun thing as I am always outside) and she will see me in one month and discuss where to go from there. She knows it can be a very long process.

Sigh of relief. somebody is listening!
7 Responses
Avatar universal
This is progress!  

About doxy, from what I read it is not the automatic first choice of LLMDs these days, and given the side effects of sun (esp going into summer) and stomach upset, maybe your doc could be persuaded to try something else.

How long the doc will treat is another question, and whether you may have co-infections is the next.

Having a doc with an open mind is a wonderful thing!  Let us know how you do, okay?
1322693 tn?1308153896
I left a message at her office to try something else. I have tolerated Doxy well as far as my stomach but the sun sensitivity is not working for me. Hope to hear from her tomorrow.

I will keep you posted. One question though.....how long while on antibiotics before you start to notice even the smallest improvement? I know it can take long term treatment for any real recovery but how do I know it is working.

Almost all of my sx are neurological..(twitching muscles, cramping, tremors, headache, chest tightness, etc)

Thank you
Avatar universal
That's great that your doc was willing to start treatment.  Doxy is excellent for early stage Lyme, but not so great for disseminated Lyme.  It has been shown in vitro to trigger some of the spirochetes to form cysts to hide.

My LLMD started me on azithromycin.  Then they added Rifampin for my Bartonella.  Bartonella is often present when most of the symptoms are neurological.  It can also make the GI symptoms worse.  It would be a good idea, given your symptoms, to test for it.  It is called b.henselae and it is a simple blood test.  Bartonella can sometimes be hidden, as it was with me.  My only signs of it were anxiety, and more neuro and GI symptoms than most Lyme cases.

As far as improvement, it varies a lot.  Some people even get worse at first.  I could tell by my 2nd appointment a month later that I had improved .  But some things worsened.  Every time I started a new antibiotic, my ribs hurt more for a few days, then it would slowly decline.
1322693 tn?1308153896
Funny you mention GI sx. Which do you have a problem with (too much or not enough?) :) Trying to keep that vague. My anxiety has been worse lately too. I didn't think that was anything other than I have been dealing with increasing sx for over 10 years now with no answers. I figured it was all stress.

I will talk to her about the other test. Wouldnt be surprised of I have something else going on.

Thank you for that.
Avatar universal
Hmm. All of a sudden my screen flashed a few times, then it posted my in-progress comment!  Oops.  

I was just going to add that if you would like to do some research, you could look at the ILADS treatment guidelines on their website. I know someone who went to a doctor who said he treated Lyme, and he just gave her Doxy... For three years!  And she is still sick. He really didn't know what he was doing. It seems that you need to rotate antibiotics to keep up the attack against the bugs.

Often, muscle cramps and twitching are due to a Lyme induced magnesium deficiency.  Have you tried supplements yet?  A form ending in
-ate is better absorbed by the body. (e.g. Magnesium sulfate, etc.). It helps in nerve function, too.

I am so glad you got a diagnosis!  

Avatar universal
There are several common co-infections that often come with Lyme, and an experienced Lyme doc will know, based on symptoms, which ones to test you for.  These 'bonus' diseases need separate testing and often different antibiotics .... Because Lyme has such different manifestations and symptoms in different people, it is hard to tease out which other diseases the tick might have left behind as its little gifts.  I had not bartonella, but babesiosis, which is like malaria.  There are others too, such as ehrlichiosis.

If you are having digestive symptoms now, it may be that the doxy has killed all the 'healthy' bacteria in your gut, and it needs to be replenished with probiotics.  If you take regular probiotics like acidophilus, then it needs to be at least a couple of hours before or after the antibiotics, otherwise the antibiotics just kill the probiotics.  There is also another type of probiotics that is not affected by the presence of antibiotics, such as the brand Florastor (generic:  S. boulardi) and can be taken at any time; I had a bad reaction to Florastor, which is rare but does happen.

However, the point is that if your gut has had all its good bacteria killed off, you can get mild to serious diarrhea, and it should not be ignored for all the obvious reasons:  dehydration for example.

About twitching etc, I agree with Rico:  take magnesium (Mg) supplements.  I take one that is a blend of Mg citrate, aspartate and orotate and it helps a lot.  Apparently Mg deficiency is not uncommon, and Lyme makes it worse bec. Lyme bacteria use up Mg in its reproductive process.  Anxiety can be a result of low Mg levels, as well as  muscle twitching and cramps.  I had one clueless doc sneer and tell me not to take Mg supplements because it could cause dangerous diarrhea, but I've never had that happen ... and if anyone is going to have side effects, it's ME!  Another doc told me if I got diarrhea, just back off on the dosage.  Makes sense to me.

Rico is also correct on the point about doxy being the 'original' antibiotic treatment ... while more current Lyme docs tend to use other things in established infections.  I was never on doxy, but instead on azithromycin and Flagyl ... the latter was to help bust the cyst formations that the Lyme bacteria hide in where the 'zith' can't reach them.

Soooo....... I'm sure your doc means well, but you may want to quietly go for a second opinion from a Lyme specialist, just so you hear another point of view.  Given how long you may have been infected, it may require a different approach than doxy for a relatively short course of treatment, which is the 'classic' Lyme treatment.  Medicine has moved on from there, unless it's a very very recent infection.

A good Lyme doc will, based on your symptoms and history, know which possible co-infections to test for.  Best wishes -- let us know how we can help.  And PS, stay strong and be brave!  We've all been where you are.
1763947 tn?1334055319
I started on Doxy and Flagyl and when I found out I had Barts, I followed Burascanos protocol and I am taking levaquin and welchol for detox.
I have improved dramatically since last year. Good luck and keep strong.
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