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This topic has been moved to Medical Questions.     next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » What do I do?!!

   
Author Topic: What do I do?!!
nybasketball212
LymeNet Contributor
Member # 28309

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In the beginning of August I started to feel a little tired and run down. I went to my doctor who tested me for Lyme among other things, everything came back fine. At the end of August after a heavy night of drinking I woke up with this drugged or almost drunk feeling. This is also when I had some cognitive issues with trouble paying attention and remembering things. Also, numbess in my legs started to begin along with a lot of pressure behind my eyes accompanied by headaches. I was having a lttle trouble walking and was feeling very week. Dozens of doctors appointments revealed nothing. On september first I was tested for lyme again which revealed a positive IgM but a negative IgG. All of my symptoms were gone besides the drunk or drugged feeling along with stiff neck and sore knees and also fatigue at this time. I have been put on doxycycline and it has been a week and I feel no better. My infectious disease doctor suggested a lumbar puncture to draw fluid. Is this necessary ? Will the doxycycline not help this drunk or drugged feeling that I have had for a month? I have had to withdraw from school and I am getting a little worried I just want this feeling to go away I would really love some help. Thanks a lot everyone
Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

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Given you were infected (probably) in August or July, the Doxycycline should make an impact on the infection. You may find the Lumbar Puncture to be useful early in the infection, yet it seems unnecessary given you tested positive on the IgM test. A positive IgG isn't necessary given these antibodies may not have developed yet.

I would suggest seeing a Lyme Disease specialist and going the safe route. The Infectious Disease doctor is not treating you aggressively enough to ensure that this infection resolves, assuming you were prescribed 100mg twice per day of the drug. Not only that, but there has been no mention of co-infection by this physician. I would not be too concerned about co-infections until you see a specialist. Most co-infections can be killed using Doxycycline but Babesia, which is sometimes transmitted with Lyme Disease is not treated with antibiotics, therefore you also need to be evaluated for that.

It is heavily in your best interest to see a Lyme specialist immediately. The longer you wait, the higher the probability that your symptoms may not abate permanently.

Send me an e-mail at [email protected] and I will provide you with a list of physicians in New Jersey who treat the disease aggressively.

-- Mike

P.S. If you start to feel better between now and seeing the Lyme specialist, don't stop treatment or cancel with the specialist. It is not uncommon for symptoms to go and then come back months or years later if the disease is not thoroughly treated aggressively, so you need to be vigilant and follow through.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
glm1111
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[QUOTE Breaking this up for easier read]Originally posted by nybasketball212:

In the beginning of August I started to feel a little tired and run down. I went to my doctor who tested me for Lyme among other things, everything came back fine.

At the end of August after a heavy night of drinking I woke up with this drugged or almost drunk feeling. This is also when I had some cognitive issues with trouble paying attention and remembering things.


Also, numbess in my legs started to begin along with a lot of pressure behind my eyes accompanied by headaches. I was having a lttle trouble walking and was feeling very week.

Dozens of doctors appointments revealed nothing. On september first I was tested for lyme again which revealed a positive IgM but a negative IgG.

All of my symptoms were gone besides the drunk or drugged feeling along with stiff neck and sore knees and also fatigue at this time. I have been put on doxycycline and it has been a week and I feel no better.

My infectious disease doctor suggested a lumbar puncture to draw fluid. Is this necessary ? Will the doxycycline not help this drunk or drugged feeling that I have had for a month?


I have had to withdraw from school and I am getting a little worried I just want this feeling to go away I would really love some help. Thanks a lot everyone
[/QUOTE]

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
LightAtTheEnd
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For many infections, differences in IgM and IgG reveal whether the infection is recent or older. For Lyme, that is not the case. A positive IgM is a positive Lyme test. Given that all your symptoms are things that Lyme can cause, I would say you definitely have Lyme (I'm not a medical person, though).

You do not need a lumbar puncture to test for Lyme. Do a search for "lumbar puncture" or look in the newbie links to find the detailed explanation for why, and the research that shows it to be a terrible test for Lyme.

Research shows that they detect Lyme in people who are known to have it only a tiny fraction of the time. ID specialists and neurologists use it, especially if you have had a positive Lyme blood test, to tell you, "See? You didn't have Lyme after all." However, they are wrong.

Negative tests for Lyme prove nothing, because the tests are so inaccurate. Positive tests prove you do have it, or rather, that you have antibodies to the DNA of Lyme bacteria, so Lyme bacteria has been in your system. If you have symptoms, then you have an active infection.

Lyme does not go away by itself if untreated, though it can go in and out of remission and be dormant until something stresses your immune system, and then relapse. So if you ever had an infection in the past, and did not get treatment, then it isn't gone and you need treatment now. (I say that because ID docs will try to tell you it's an old infection, so you don't have it any more.)

Note that excessive sensitivity to alcohol is a symptom that many Lyme patients experience, feeling "drunk" from a half or one drink, for example. Lyme also causes a variety of neurological symptoms, including brain fog, confusion, dizziness, fatigue, etc., that could make you feel drunk or drugged.

The doxycycline will help you get better in the long run, but you need to take it much longer than a couple of weeks, and probably in combination with other medicines too. You need a Lyme literate doctor (LLMD) to help you sort out which particular coinfections and opportunistic viruses you might have on top of Lyme, and which drugs would have the best result in treating you. You may not see positive improvement for months, but in the long run, that is how many people get better. Treatment should continue until at least 2 months past the time when you become completely symptom-free, according to guidelines by Dr. B, a retired but highly respected LLMD. You can find those and the ILADS guidelines for treating Lyme at www.ilads.org.

ILADS is the organization that is on our side, with members who are dedicated to treating Lyme patients until they get well. IDSA is the organization that most Infectious Disease specialists belong to, and they are not our friends. They generally deny that chronic Lyme disease exists, and tell everyone with a positive test that it is a false positive in spite of their symptoms, bullseye rash, or history of tick bites. They do not recommend any treatment for Lyme past a few weeks. Their guidelines are the ones that most mainstream doctors look at to see how to diagnose and treat Lyme, but the guidelines are completely wrong, and lead to people not getting diagnosed and not getting treated.

In the short term, the doxycycline might make you feel much worse. If so, that is a major confirmation that you do have Lyme. Between 3 days and 4 weeks of starting a new antibiotic, it is common for Lyme patients to have a pronounced herx reaction.

A herx is a Jarisch-Herxheimer reaction, which occurs when a lot of Lyme bacteria die at once, and release a large amount of toxins into your body. The toxins cause symptoms until your body can eliminate them. The severity of your symptoms depend on how many bacteria were killed, how good/fast your body is at detoxification (some people have a genetic difficulty with it), and how well your body's systems were working before the treatment.

It can feel like the flu, like you got hit by a truck, like all your symptoms just got worse, and/or you could have new symptoms appear. Various detoxification ("detox") methods are useful to reduce the amount of toxins and relieve the misery of herxing. People sometimes mistake it for side effects of the antibiotics and just stop taking them, wrongly concluding that the drugs are making them sicker. You need an experienced LLMD to help you figure out whether to continue or discontinue a drug in that case.

Some people never herx or only herx slightly. Others experience prolonged, severe reactions. Herxes tend to recur in a regular cycle every few weeks, possibly connected with the reproductive cycle of the Lyme bacteria. Usually successive herxes on the same drug are less each time, interspersed with periods of feeling gradually better.

When I started doxy, I had a bad herx within 3 days that lasted for 10 days (mild compared to what many go through). I then felt worse than I had before treatment for the next 4 months, and then began to see some gradual improvement.

If you don't treat the Lyme, it is very likely to get worse over time, and affect more areas and functions more severely. Also, the sooner you treat it, the easier it is to get better. Therefore it's important to get treatment right away, from an expert LLMD, and stick with it until you get better.

Take probiotics every day while you are on antibiotics (at least 2 hours apart) to prevent yeast and digestive problems.

Don't eat calcium, magnesium or dairy products within 2 hours of taking doxycycline because they will prevent it from being absorbed properly. Cover up and stay out of the sun while on doxycycline, or you can get a very severe chemical sunburn in a short time, possibly through glass and even through heavy duty sunscreen. Take it in the middle of a meal for the best chance of avoiding nausea and vomiting.

Read the book "Cure Unknown" by Pamela Weintraub to understand the whole politically messy Lyme situation, why it is that your dozens of doctors could/would not diagnose or treat you, and why you need to get to an LLMD as soon as possible.

The DVD "Under Our Skin" is a short explanation of the problems encountered by Lyme patients, and is great for watching with friends or relatives so they can understand and support you more. It is also good if you have too much brain fog to read a long book, but can watch a short movie. You can get it from www.underourskin.com.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

Posts: 756 | From Inside the tunnel | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Pass on the spinal tap and pass on the infectious disease doctor!!!

SPINAL TAP NIGHTMARE
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=047324

A spinal tap has about a 20% chance of coming back positive for lyme.... your test is already positive... find a LLMD and get on a protocol to get you well!

Link to Seeking a Doctor:
http://flash.lymenet.org/ubb/ultimatebb.php/forum/2

Quick Links to Popular topics:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

Your ID dr will not test you for coinfections and you could have them!! Look at the link right above this and go to the symptoms list for Lyme and coinfections.

I'm moving this to Medical Questions where you will get more help.

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95663 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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