posted
I was diagnosed with lyme in late November 2006, and put on antibiotics. However, three weeks ago, my herxheimer reactions became too severe and we had to stop.
I began to go back to baseline after quitting the antibiotics, but over the past few days, my symptoms are suddenly worse than they've ever been before.
I've started having seizures, and my POTS is so bad I can barely walk to the bathroom and back.
Has anyone had something similar happen after stopping antibiotics? It's like the lyme is REALLY biting back.
Also, has anyone been this sick and improved? I'm so worried that I"m doomed to a life of disability, and my LLMD keeps dancing around the subject of if I"ll improve. I've probably had lyme for 5 years, but only really got sick 1&1/2 years ago, but I have really bad POTS, and have to use a wheelchair if I leave the house. I'd just love to hear from people who were this sick and got better!
Thanks,
Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I know multiple people I have met in person, in real life, who were in wheelchairs and got better!! Some diagnosed MS, Yes, it is possible. Whether you will or not, I can't say but it sounds like you have a good LLMD and in my experince IV Rocephin is the way to go for people who have mobility issues.
Seizures can be from Lyme but also from Ehrlichiosis/Anaplasmosis or Babesiosis. I would make sure you are treated for all the major TBDs even if you are seronegative. Krause said in his pediatric Babs paper that over half of Babs is blood negative unless acute!!!!!!!!!!!!!!!!! ANd Ehrlichiosis/Anaplasmosis can be seronegative even WHEN acute!!!!!!!!!!!!!!!!!
Nice to meet you*)! If your Herxes are ultra-severe you should make sure you don't have an RF strain of borrelia-!!!
Take care, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
I am sorry to hear that you are so sick.
My daughter got diagnosed with severe POTS and has improved a lot as we are treating it with proamatine and florinef. The cardiologist said it was caused by lyme; but needs to be treated separately and can be cured.
Are you being treated for the POTS.
My kids and I have been treating lyme for 2 years and unfortunately we have found that the healing process is or at least feels real up and down at times. I have at times felt that we were not getting better or even going down, when in hindsight we have been slowly improving all along. It takes a while for enough healing to occur to significantly change your situation. For us, kids back to school. For you, getting out of wheelchair.
The beginning is the hardest. with the shock and discomfort of it all.
We have had to use low doses of abx for my daughter because of sensitivities and she is getting better.
My son had so much foot and leg pain he was on couch all the time and he is tons better.
It is possible you can tolerate different abx or lower doses of abx as far as a new plan to try.
The other thing is that people also seem to get well on protocols that do not involve abx. Bruhner's protocol is one example. You could do search here.
It is so overwhelming at first, but it does get better. Again, I am sorry you are going through this; but you can get better.
Consider treating depression and anxiety that is often caused by the disease and the stressful situation it places you in. Also, herx reactions affect emotions. IMO it is harder to get well with being more down or stressed out than necessary. It is not a sign of weakness and I am surprised that more LLMD's do not include treatment for depression and all initially and often wait til the patient percieves it to point of asking for help.
Patience and watching countless DVD's has helped here!
I have really bad POTS from lyme too so know how you feel.
for me my heart used to race at 150bpm anytime in upright position-so just getting up out of bed in the morning used to exhaust me & i used to have to use a wheelchair to get about if i ever went out the house too(rarely)
BUT now its under control with meds - i take florinef & low dose atenolol & i am now able to function much better in the upright position after spending 5 yrs bedridden so hang in there -there is hope for you too these meds turned my life around as they have helped me more than abx!! after only a month on florinef, atenolol i was able to start exercising-swimming, cycling & walking which helped strengthen me physically
my POTS & NMH is always the one thing that worsens with herxes too & i just have to increase my atenolol dose temporarly to control the heart rate until it passses . what abx were you on to get the bad herxes? flagyl/tinidazole are the ones that always make my POTS really bad
magnesium injections also help my POTS symptoms as relaxes heart muscle -maybe something you could try too?
do email me if u want any more POTS advice, hang in there -you will get better Liz
Posts: 83 | From UK | Registered: Oct 2005
| IP: Logged |
posted
Hi Lauren What antibiotics have you been on? Did the herxing start inmediatly? John
Posts: 94 | From canada | Registered: Nov 2006
| IP: Logged |
As for my antibiotics, I was on Zithromax 250mg every other day, and tolerated it okay (I had some moderate herxing the first few weeks, but it went away). The really bad herx started about 1 week after upping the dose to 250mg every day. I developed reactive hypoglycemia and my POTS got so bad, I could barely function.
I went OFF the antibiotics 3 weeks ago to let my body recover, and was doing better until Wed night, when I had my first seizure. Since then I've been almost completely bedridden...even getting to the bathroom is a major undertaking.
I've never been this sick before, so I'm really worried about what's happening. My LLMD is off this week, so I haven't been able to talk to anyone aside from the ER docs who diagnosed my seizures...and of course, they were pretty clueless.
Right now I"m on midodrine (proamatine) and mestinon for the POTS, which help a little. I used to be much more functional before starting antibiotics...I'd say at about 50% capacity. Right now I'm at about 5-10% Posts: 22 | From Maryland | Registered: Dec 2006
| IP: Logged |
savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
My pots was so bad that I was used a shower chair and a wheelchair on my bad days.
All I can say is keep going with your treatment and your hypotension will get better. Inderal LA also helped to hold my pressure up along with lots of water.
Treatment for lyme and co-infections takes time, but you will get better. Posts: 1603 | From ny | Registered: Aug 2006
| IP: Logged |
posted
You said the ER docs diagnosed your seizures. Unless they did an EEG I would suspect that you do not have true seizures.
Hubby has what I call seizure-like episodes -- they can fool an ER doc, but his EEG's do not show seizure spikes -- only muscle movement artifact. Seizure meds haven't been of much help with these episodes except for IV Ativan.
The thing that has helped him the most with seizure-like episodes is babesia treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Lauren...I know what your going through with the seizures. I've had seizures for a long time.
When my seizures were at their worse I went on the 'msg free diet' & they went away completely. I was seizure free for about 1 & 1/2 years.
But that all changed. Last Oct 23rd I was put on meds & antibiotics by my LLMD. I was only taking small dosages & for only a few days & my seizures are back & I'm still getting them after being off the meds for about 3 & 1/2 months. I had a couple of seizures today as a matter of fact while taking a nap.
I was reacting to the 'free-glutamate' in the meds. I will not take any meds of any kind. Also have a problem with supplements.
It is my belief your not herxing but having a reaction to 'free glutamate' such as I was. There is a distinct difference between a herx & a reation.
When you start getting seizures you must be very careful what you do from now on. Are your seizures in your head?
-------------------- Pat Sr Posts: 63 | From Toms River,NJ | Registered: Oct 2006
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Lauren,
When I was at my worst I couldn't stand up long enough to cook. That was for almost five years! Now I can do it on most days, although I'm not into gourmet meals. At least I don't have to rely on Lean Cuisine all the time.
I've been on abx for Lyme for nine months now. I've had it for more than 40 years.
At first my dx included NMH, but more recently it has become POTS. I take Florinef, midodrine, and Inderal LA to get my BP up and keep it there.
I think it's important to treat the POTS separately from the Lyme, which it sounds like you are doing, but possibly you will need to change your meds to get over this recent blip.
I hope you can reach your LLMD soon.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
could someone explain to me what POTS is? It is starting to sound like that may be in part what is happening to me.
In the past I would tell my doctor it felt like a sugar crash but that was as far as I could explain it. I would feel almost lightheaded but it was more like I couldn't hold my body up.
It can come on suddenly, making dinner, driving in the car, sitting in a chair.
Sometimes my heart will race but often I will get irregular beats - never caught in the doctor's office but she has picked up on low blood pressure but has not seemed overly concerned.
I just keep putting a lot of this in the "Lyme basket" not being sure what exactly to treat.
Posts: 104 | From connecticut | Registered: Jan 2007
| IP: Logged |
Seibert, I'm glad you mentioned the babesia. My doctor suspects I have babesia...I havent' tested positive for it, but I have all the symptoms. And my seizures do present differently from ``normal'' seizures. The ER docs were all very confused. Perhaps I'm having a babesia reaction?
Wenan, POTS (Postural Orthostatic Tachycardia Syndrome) is defined as an increase in heartrate of greater than 30 beats per minute upon standing. However, there are many symptoms that accompany POTS that are very disabling. These include nausea, exhaustion, headache, purple legs and hands, chest pain and difficulty breathing...all UPON standing. Most people's POTS symptoms are relieved when they lay down. I've posted a link below wich can give you more information:
Anyway, thanks again to all who answered! I feel better knowing others are going through/have gone through what I'm experiencing. And now I have much more hope that I'll recover from this horrible episode in my life!
Hugs,
Lauren
Posts: 22 | From Maryland | Registered: Dec 2006
| IP: Logged |
posted
You need to get in to see your LLMD right away!! Seizures and worsening of heart problems is not something to fool with. Frankly, I am extremely suprised that you haven't been tested for Babesia because it is such a common co-infection with Lyme and can really figure into the equation big time. Your doctor really should have tested and should still test you for all the common co-infections with Lyme (ie Bartonella, Babesia, Erlichia). Any of these, if you turn out to have them, figure in, BIG time. While the point thst SiebertNueroLyme is very valid, babesia isn't the only thing that could be causing your seizures. Bartonella is a huge mischief maker in the brain. It can cause a variety of problems and really mess things up. Okay, with that said, again, you really need to get in to see your LLMD ASAP and get him to run the co-infection tests if he hasn't done so already.
Take Care and I hope things get better soon! K-lyme
Posts: 227 | From CA | Registered: Apr 2004
| IP: Logged |
posted
I had an extreme case of this 2 weeks ago and just now able to get up and move around a little.
I was at place and 911 was called. I did make it to chair, but then collapsed, incoherent, gasping for ear, and tachycardia(excessive heartbeats).
Not sure if you're taking Zithromax, but it stays in your system for days. I was doing small things before treatment, but now it's extreme bedridden, and can't walk around without severe dizzyness.
After thinking I was going to die, I'm not taking my chances and simply saying "Oh, this was a herx". I want to get tested for this medicine.
What are we to think when we can function at least enough to keep my house up, eat, and use the bathroom... but with treatment, I'm(we're) in the emergency room every week, and can't take care of ourselves. And we're supposed to live like this for several months to years!!!!!? No.
I'm making sure it's not a medicine allergy, and if not, I'm decreasing the dose by A LOT... even if it's slow and takes a couple of years to treat. You're right about the POTS, but I only get it when I'm going through a herx. When I take a break, it doesn't happen.
-------------------- Never walk through a cornfield backwards.
posted
K-lyme, I'm sorry if I wasn't more clear. I've been tested for babesia, but tested negative. In fact, I technically tested negative for lyme too, but almost all the bands in my Western blott were either positive or indeterminate.
The only thing I've tested positive for is micoplasma...which doesn't explain my symptoms.
I will try to call my LLMD...it's just he charges nearly $300 for a phone consultation, and frankly, right now it's a choice between talking to him or eating.
I wish LLMD's weren't so criminally expensive. Posts: 22 | From Maryland | Registered: Dec 2006
| IP: Logged |
tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Lauren,
Which strain of Babs were you tested for?
I was always negative on Babs tests until they specifically tested me for Babs WA-1, which came back positive.
posted
Thanks Tabby! I'm not sure what strain of babesia I was tested for, but I'll definitley ask my doctor to test for different strains if he think it'll help. Right now it's so scary not knowing exactly what I have, you know?
Posts: 22 | From Maryland | Registered: Dec 2006
| IP: Logged |
Make sure they test WA1. I'm in VA and was surprised to find out I have it and it's been complicating treatment for a year and a half. Its not just a west coast strain!
Both labcorp and quest testing confirmed. Also, my eosinophil count is consistently high, suggesting parasitic infection....cancer was fortunately ruled out, even a mainstream hematologist confirmed my body is trying to fight the parasite.
Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
these meds turned my life around as they have helped me more than abx!! after only a month on florinef, atenolol i was able to start exercising-swimming, cycling & walking which helped strengthen me physically![[hi]](graemlins/hi.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic