LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Desperate for advice and help

 - UBBFriend: Email this page to someone!    
Author Topic: Desperate for advice and help
nybasketball212
LymeNet Contributor
Member # 28309

Icon 1 posted      Profile for nybasketball212     Send New Private Message       Edit/Delete Post   Reply With Quote 
So beginning 8/1 I started noticing being very tired all of the time. After a heavy night of drinking on 8/22 I woke up the next morning with this insane brain fog I guess you would call it, feeling this intense drunk/drugged or high feeling. I thought it would go away, it didn't. Then a little numbness in my arms and legs began along with a headache with significant pressure behind my eyes. Also came abdominal pain. 2-3 weeks later the numbess, ab pain, and eye pressure went away for the most part. This is when the neck stiffness and knee pain began, with the drunk/drugged feeling still constant 24/7. I've had exhaustive blood work, MRI, and EEG all came back fine. I'm a 22 yr old college student who is healthy and in good shape. I had a lyme test done by ProLab(?) done where my IgM was positive by bands 43 and 21, with the IGG negative. I was put on doxycycline. After 2 weeks of doxy, I have seen no improvement whatsoever at all. A month after the first test I took the lyme test again which was negative for IgG and IgM. Would the doxycycline effect the test result? I am aware this is a lyme website, but do you really think it is Lyme? No recollection of any tick bite, no rash, never a fever. And it seems the brain fog comes in late stages of Lyme and I didn't have or atleast did not notice any significant joint pain or anything before the nuerological symptoms so I feel like my symptoms did not follow the traditional pattern of Lyme. I have had to withdraw from school the drunk/drugged feeling is so bad. As a very good student who is very career oriented, this is a big deal for me- just to give you an idea of how intense this feeling is. Does anyone have any non biased advice to offer? I'm desparate. Thanks for all of your help.
Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
sprite8
Member
Member # 28259

Icon 1 posted      Profile for sprite8     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't know if this is lyme, but you could start by getting a neurological eval. for the drunk drugged feeling.

I have lyme and I have felt that way before. sometimrs get vibrations in my head. you could get an eval. from a lyme literate doc. you can be seronegative and still have lyme.

ticks are so small most people don't remember getting bitten.

Hope this helps.

--------------------
sprite8

Posts: 38 | From MA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759

Icon 1 posted      Profile for Hoosiers51     Send New Private Message       Edit/Delete Post   Reply With Quote 
To me, it sounds like Lyme, even tough you skipped the first few "stages." You have a lot of the symptoms.

I would look into a bartonella coinfection (you can get Lyme and bart from the same tick bite) as a cause of the brain fog. Some people see success with the antibiotic Rifampin, normally combined with something like Zithromax (or Doxycycline), for brain fog. But the Rifampin would be what's treating the Bartonella.

I highly recommend the book "The Lyme Disease Solution" by Kenneth Singleton (Available on amazon.com). All of what I said above is in there.

Rifampin didn't do much for my brain fog....mine got better from using Bactrim DS, 1 pill twice a day. I would try either Rifampin or Bactrim DS if I were in your shoes. But you may need to see an "LLMD" (chronic Lyme specialist) for that....I doubt a regular doctor would just prescribe it.

Though you could try getting tested for bartonella henselae and see if it comes back positive. I know it sounds crazy, but it can cause the brain fog. I would also get tested for babesia, if you don't improve trying to treat bartonella. All these infections can be tickborne. Many people get more than just Lyme. (again, see the book by Singleton)

Of course, it could be other diseases, but in my opinion, it sounds a lot like Lyme and coinfections, so that's what my money is on, if I had to bet. Sorry..... [Frown]

I feel your pain. I also had a sudden onset, like what you describe. Though for me, it just felt like I had mono when the sudden onset happened. Looking back, I remembered having mysterious knee pain for an entire year before the other symptoms, but I never associated the two. I had no other symptoms though, so I don't doubt people just fight it off and don't even notice the first few stages of Lyme.


Thanks to treatment, my brain fog is a lot better, but my tiredness is still bad.

Posts: 4590 | From Midwest | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
missing
LymeNet Contributor
Member # 22437

Icon 1 posted      Profile for missing     Send New Private Message       Edit/Delete Post   Reply With Quote 
this link might help

www.thehumansideoflyme.net

have you seen a Lyme Literate Doctor?

I think Igenex has the most accurate testing.

and you need to have tests done for co-infections.

There are lots of links around here that can give you more info.

www.ilads.org is one

--------------------
I am not a doctor. I have no clue.

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
kitty9309
LymeNet Contributor
Member # 19945

Icon 1 posted      Profile for kitty9309     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, taking the doxy could have likely made your second test negative.
Posts: 819 | From East Coast | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
janet thomas
Frequent Contributor (1K+ posts)
Member # 7122

Icon 1 posted      Profile for janet thomas     Send New Private Message       Edit/Delete Post   Reply With Quote 
You can check your symptoms against a list at www.canlyme.com. Click on symptoms and tally yours.

--------------------
I am not a doctor and this is not medical advice but only my personal experience and opinion.

Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
kimmie
LymeNet Contributor
Member # 25547

Icon 1 posted      Profile for kimmie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Positive IGM indicates active infection. My western blot through Igenex does not have bands 43 and 21 as options...so I am confused.
The specific antibodies to Borrelia Burgdorferi (lyme) are these...18,23,30,31,34,39,89 and 93. Only one of these lyme specific bands in needed to confirm exposure to Bb.

I am not familiar with the lab you tested through or those bands. I would suggest you test through Igenex...1-800-832-3200 They will send you a test kit and lab order slip/instructions. To get a good western blot... test #188 & 189 Lyme western blot IGM and IGG each test is $100 and if your doctor will order, labcorp can draw and ship.

Now, if you displaced your numbers and are positive on band 41 and 23...different story...band 23 is only specific for lyme and band 41 is for exposure to all spirochettes so that would indicate exposure/infection to Bb (lyme). If that is the case...you need to see an LLMD for proper treatment. IGG can be negative.

Feel free to contact me if you have any questions. Best wishes

Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
nybasketball212
LymeNet Contributor
Member # 28309

Icon 1 posted      Profile for nybasketball212     Send New Private Message       Edit/Delete Post   Reply With Quote 
I did misplace my numbers and was indeed positive by band 41 and 23 sorry about that, and thank you for your help any further thoughts are truly appreciated. I will update after my visit with a LLMD this week.
Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091

Icon 1 posted      Profile for Rumigirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
I hope your appt is with a real LLMD, not an Infectious Disease doctor! I hope that you have read some of the info on the top posts

in the Medical Questions section, so you have educated yourself about LLMD vs other drs. If not, please do so ASAP, so you don't waste time and money on the wrong dr.

Two weeks on doxy is nothing, and probably wasn't the correct dosage. And, yes, as someone said, that can make you test negative for a while afterwards, even though you still have Lyme.

Posts: 3747 | From around | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
nybasketball212
LymeNet Contributor
Member # 28309

Icon 1 posted      Profile for nybasketball212     Send New Private Message       Edit/Delete Post   Reply With Quote 
I will be seeing a LLMD, I just still have my doubts and am curious as to what others think since I have never had a fever and my symptoms do not seen to follow the traditional path of lyme patients, although all the symptoms are very similar as noted above
Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
tick battler
Frequent Contributor (1K+ posts)
Member # 21113

Icon 1 posted      Profile for tick battler     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sounds very much like lyme to me. I think band 23 may be specific to lyme (meaning no other infections could cause it), but you might want to confirm that (I don't have my list handy). If so, this would mean you have been exposed to it, and would be further evidence pointing to it.

All of your symptoms sounds like lyme to me. Good luck with your LLMD appointment. Keep doing your research and you will figure it out. The testing is not very accurate, so you really need to look at the symptoms. And then see if abx help (or cause temporary worsening symptoms, which would be a sign as well).

tickbattler

Posts: 1763 | From Malvern, PA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

Icon 1 posted      Profile for bcb1200     Send New Private Message       Edit/Delete Post   Reply With Quote 
Very similar to my story. I have lyme / bart. Drunk / drugged feeling was very bad originally.

Good news isit is GONE today.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3116 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
kimmie
LymeNet Contributor
Member # 25547

Icon 1 posted      Profile for kimmie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Everyone experiences lyme differently. I have NEVER had fatigue. Odd huh? I have only mild joint pain. All my symptoms are neurological...blurred vision, dizzy, headache, drunk feeling, twitches, spasms, tremors. Your symptoms are highly suspicious for lyme and your lab work supports this.
Posts: 747 | From Utah | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
nybasketball212
LymeNet Contributor
Member # 28309

Icon 1 posted      Profile for nybasketball212     Send New Private Message       Edit/Delete Post   Reply With Quote 

Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
By now, you may know that there are few things to avoid if you have lyme:

Aerobic exercise

Alcohol

Caffeine

Steroids - of any kind.

Lumbar puncture (also called spinal tap) - not a good test for lyme.

MSG and Aspartame (Google for all the names they hide under.

Artificial colors, additives, processed foods.

When you get to a LLMD, you can get a clearer list of things for your self care but now, be sure to take the very best care of yourself. Eat healthful foods and rest when you feel the need.

Some exercise is good - but only non-aerobics until you get to your LLMD. In the set of links over at another thread of yours, this is explained in Burrascano's guidelines. I noted the self-care pages.

Good luck. For that set of links, go here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/99635
-

[ 10-07-2010, 06:56 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
hubbylyme
Junior Member
Member # 28529

Icon 1 posted      Profile for hubbylyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
my hubby was given steroids by a doctor that is not lyme related he thought he had a hip problem. do the steroids make lyme worse. if so maybe that is why he has been getting worse the last week or so. He isn't doing anything and is still in severe pain. He was given vicodin for pain and he is only lasting 2 1/4 hrs before he has to take another and he is only to take 4 a day. that is doubled with slight relief. I feel helpless i can't do anything for him. Dr. won't call back and we made appt for monday hopefully to get answers. came on here to see if i could find something out. looks like some people with lyme are dealing with back issues also.
Posts: 5 | From pennsylvania | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by hubbylyme:
my hubby was given steroids by a doctor that is not lyme related he thought he had a hip problem. do the steroids make lyme worse. if so maybe that is why he has been getting worse the last week or so.

YES! Didn't you have another post of this nature?
I'll see if I can find it and will bring it to the top for you.

NYbasketball: Sugar and simple carbs (white foods) can also give you a drugged feeling if you have ANY amount of intestinal yeast.

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

Posts: 95426 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
feelbetter
LymeNet Contributor
Member # 21957

Icon 1 posted      Profile for feelbetter     Send New Private Message       Edit/Delete Post   Reply With Quote 
not sure you have lyme but the feeling you describe (brain fog)sounds like derealization for me.
Posts: 158 | From pittsburgh | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
Along with LymeToo's post:

"Brain Fog" is classic for lyme. Due to many factors as described below but often, with neurolyme comes chronic encephalopathy and encephalomyelitis (includes brain swelling). Within 12 hours of a bite by an infected vector, borrelia can infect the nerves and it becomes neuroborreliosis.

As lyme damages the liver - that creates a drugged/drunk feeling.

Lyme can cause drops in blood pressure (POTS, NMH) and in blood volume (hypoperfusion in the brain). That can create a drugged/drunk feeling.

Lyme can cause diabetes and severe sensitivity to simple sugars, crashing us down like concrete. Simple sugars can "drug" lyme patients from many angles.

Lyme is one of the most toxic infections known to man. THAT toxicity creates a drugged reality - drugged from toxins.

Lyme also creates havoc for the entire endocrine system and adrenal exhaustion can create a severe state of depletion.

Lyme also often affects the inner/middle ear system creating all kinds of vertigo and sensitivities to sound, light and motion. That can create a drugged feeling.

==========================

www.townsendletter.com/FebMar2006/lyme0206.htm

From the Townsend Letter for Doctors & Patients

February/March 2006

BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST

by Prof. Robert W. Bradford and Henry W. Allen

EXCERPT:

. . . A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism). . . .

- Full article and great photos at link above.

===============================

Regarding psychological and psychiatric matters caused by neurotoxic infections:

www.thehumansideoflyme.net

The Human Side of Lyme

Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . . .

================================

http://www.angelfire.com/biz/romarkaraoke/whento.htm

When to Suspect Lyme - by 
John D. Bleiweiss, M.D.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.