NeuroTalk Support Groups - Doxycycline causing numbness

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- - Doxycycline causing numbness (https://www.neurotalk.org/lyme-disease-shingles-and-other-microbial-conditions/239808-doxycycline-causing-numbness.html)

Quote:

Originally Posted by Diandra (Post 1224470)

May I suggest, if you are doing IV abx for the first time, you should prepare for the possibility of a herx. They gave me pretty high doses of Rocephin and
I did herx and it was tolerable but, I was already off work and a family member came to stay with me so my husband could work so I was well taken care of. Since you are the breadwinner, and if your employer is not understanding, maybe take some vacation time.

Yes, I was worried about that. I know my first dose will be given at my Lyme clinic so they can watch me. I will take some time off work. Prepare for the worst, hope for the best.

Quote:

Originally Posted by Diandra (Post 1224470)

If I had to do it all over again, I would do IV again in a minute. I was not "cured" but it brought the pain level down and helped a lot of symptoms, the worst being seizures,migraines, insomnia, narcolepsy and neck pain so bad, I couldn't sit upright. It also brought back some cognitive function I had lost and just made me feel, cognitively, a bit more like my old self.

The equilibrium got much better but sadly, pain in my face, which is actually the pain in the entire right side of my head, was better while on IV and for several months afterward but, it came back. I had to stop all abx because my c.diff issues were becoming very serious and my docs advised no more abx, ever. It is the main reason I have too stay on gabapentin or Lyrica. I stay on the lowest dose possible of Lyrica...it just takes the edge off. I also take opiates for the pain.

Gosh the face pain is the worst, isn't it? I wonder why some people get worse after antibiotics. We need more research.

Quote:

Originally Posted by Diandra (Post 1224470)

Also, if you are paying for it yourself, I knew folks who had no insurance and had to be resourceful. One woman went right to abx maker and got a discounted price but this was 15+ yrs ago. I just had to purchase some of my cancer meds from Canada because my insurance would not cover them and that is another option although I know the PICC line insertion and nursing costs are what rack things up. I also knew people who enlisted family members who were nurses to help manage the PICC line rather than pay an agency.

I think I'll likely get 4-6 weeks of IV paid by insurance due to my second positive Lyme test after 1 year of orals. I have a friend who is a nurse who can help manage my PICC line (my insurance will only pay for a nurse if I'm bedridden). I guess I'll likely need 3-6 months of IV, so I'll definitely explore all options to keep the cost down.

Quote:

Originally Posted by Diandra (Post 1224470)

If you do the PICC line, hydrate like crazy the entire day before you have it in...it helps insertion. Prior to my PICC line, I had a midline and my nurse not only had me hydrate, she had me wrap a hot/wet large towel around my arm for 20 minutes prior to insertion...it REALLY helped. I have tiny, crappy veins. I was so scared before the first time because I am such a wimp about needles but they taught me how to do the Rocephin twice a day, flush with saline and heparin and it was easy. Seriously, if I can do it, anyone can do it.

Best of luck. Please let me know if you decide to do it. I'll be your cheerleader:)
Diandra

Thanks for the tips and support!

So, my 3 weeks of doxy is just about to finish and i feel that there hasnt actually been any improvement in my symptoms after all.

Although there was initially some scabbing of the skin over some of the problem areas (my fingertips), these cleared up quite quickly without significance and now im worried now that perhaps my Lyme diagnoses was incorrect, and that the 2 positive test results i had were false positives.

I have another appointment with my doctor in 2 days time to discuss how the treatment went and im wondering what to do next. Should I push to continue the Doxycycline and see if i get any results from a longer trial, or should I ask to be retested, maybe with a broader test for other infections such as bartonella?

Could a positive test have actually indicated another type of infection other than Lyme disease?

Thanks

you have/had open sores on your fingertips?

This link explains what might be happening to give a false positive result:
Lyme Disease Test

great! that's exactly the kind of info i needed. Thanks Mrs D :)

But no, i never had open sores on my fingers, just specific areas of skin on my fingertips about the size of a pea, which are hypersensitive. It was these areas that dried out and hardened during the first week of the doxy which lead me to think it was doing something. Unfortunately, they healed just as quickly and went back to being hypersensitive again :/

Can you post the results of your western blot? Which bands were positive?

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Also false positives are considered rare. I had to do a bit of searching, but this best sums up why this is the case and gives a bit of the backstory as to the origin of he controversy- LymeMD: Understanding the Western Blot

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LymeMD: Labcorp and the Lyme Western Blot. I recommend going on Dr Jaller's blog and typing in "false positive". You will get a series of of posts about this topic. While he is a LLMD, he is conservative, open to changing his opinion, knows what the Lyme literature says and doesn't say, is an allopathic physician by training, and doesn't utilize integrative medicine. His insight is very valuable.

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ok, i just came back from the doctor, i asked about the results of the previous tests and unfortunately he said he was never given specific results, just that the two previous tests results were: 109 in May, and then 40 in June, with anything over 18 deemed to be a positive result.

Looking at the receipt the test ordered was just called: Borrelia burgdorferi so im at a bit of a loss as to what test it was exactly...

Having finished the 3 week course of Doxy now, my next instructions are to wait 3 weeks and then be tested again. We will go from there, i guess.

Hmmmm very interesting. I'm not sure what test you took either. And it's interesting that your doctor is retesting. This isn't a typical approach for a conventional medicine doctor.

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yeah i must admit im at a bit of a loss about it all.

My doctor is cool though, he is willing to listen to my suggestions and on asking to be referred to a Lyme Specialist he said he wasnt aware of any but maybe one of the neighboring Neurologists would so. So, in 3 weeks i will be retested and then i will go see the Neuro instead who may or may not send me over to an LLMD.

All sounds very straightforward... :D