Something has caused me to be a million times worse since I started treatment for Lyme. (1000mg Zithro, Artemesiae, fish oil, vitamin E, CSM)--for 2 months.
I can not tolerate medicines including nasal sprays, I can barely get up to use bathroom without collapsing, and have ended up in ER approx 5 times in last 2 months.
I ONLY HAD BRAINFOG WHEN I STARTED TREATMENT!
I haven't taken any medicines in last 2 months, and now have recently figured out this may be (Severe) POTS related. It doesn't appear auto-immune because auto-immune blood panels come back normal.
Am I going to be laying down and crawling to get to the bathroom for the rest of my life.... just give me back the brainfog.
Is there anyone in this situation that can tell me something? Can I at least take CSM(I'm thinking because it doesn't go in bloodstream)?
It's scary to take anything because I end up having a 2 day long anxiety attack(heartbeat stays 120 beats/minute and higher)while staring at ceiling and not moving(to not increase heart rate).
At least I got computer on floor.
Posted by david1097 (Member # 3662) on :
A couple of questions, Did you try to back off each of those drugs in s step wise fashion? The reality of the situation is that any of those things could be causing the worsened symtoms you see.
I will some flak for this but I beleive that if you are getting worse rather then getting better then your antobiotic treatment is not working and a different regime is in order. I don't knwo your history but if you do in fact have Lyme and are just getting worse with antibiotics alone then you might have one or more things mixed with the lyme infection. The infections are in a mutual state of check and if you upset one, the other can get worse. However, before one can say this for sure that this is the case one has to remove all the variables such as artimesia and supliemnts (artemisions IS known for some neurological side effects so if I was in a similar situation i would stop that one first). You can also get neurological side effects from the fillers and colorants in pills so any pill is suspect.
PM me if you would like to discuss further.
Posted by nan (Member # 63) on :
I had the exact same thing before starting treatment for lyme. Ended up in ER twice. They told me I probably had the flu. Scary stuff! Heart pounds erratically, and unless you get your head down you pass out. It happened when I stood up, but would also happen when I was just sitting.
At one of my ER visits they told me my BP was just fine. Of course, I was lying down. Then they asked me to stand to have a chest x-ray...the tech caught me before I hit the floor. But noone took any note of it.
Then I read about it after getting lyme dx and realized that was exactly what I had! Hubby took my BP during one of these spells and it was 70/40.
Have been off treatment for 8 months and lo and behold it has been happening again. (10 years later!) Refuse to go to ER EVER again...and hope I can make the trip to NY May 9th!
You have my sympathy...I hate this! But with treatment it did disappear.
Posted by Kendrick (Member # 10990) on :
Thanks Nan... My absolute worst symptom is that I can't tolerate any medicines.
This is the biggest thing people don't understand when I say I can not tolerate medicines...............I have 2 day long anxiety attacks.
For anyone who has had an anxiety attack, and knows how horrid it feels when it last a minute or so. Now imagine it lasting for hours/days.
Nasal spray, Meclizine, ... each one I did individually.
It's bad enough about the Lyme thing, but when you're in an F'd situation, and no one on the disease website has experienced it, you're truely gone.(I've posted this question with no answers from anyone who has experienced this).
Polar Blast thinks it's the Art neurotoxicity. If so, does it correct itself? What the hell is going on here? Feel like I'm destined to lay in bed forever(2 months down, rest of life to go).
Again, give me a time machine(flux capicator) so I can go back and only have Vertigo and brain fog.
Posted by typhoon_sheri (Member # 10325) on :
Kendrick...I was in the ER and in the hospital while being treated for Lyme 4 times in the past year. The first 2 to the ER I had the same exact symptoms as yourself and I went home, with chest pain, they told me I was dehydrated. (Which I was not, all my electrolytes were normal.)
After I had a PICC line put in I was in hospital for 10 days for a blood clot.
I was on too much to fast ....all at once from the Fibro and Fatigue Clinics. Antibiotics, 10 different supplements, hormones etc. The doc there said when you get that sick it is "herxing" and meant I was getting better. (True, yes, but not to the point where you feel like you are dying.) The first 2 times I took that as fact.
Later on down the line it took a while for the light bulb to go off, I was on way too much for way too long.............. Also no one told me to detox........
I say follow your insticts if you need to go to the hospital, but it is to the point where I hate hospitals, especially the ER...... I know, I know, they do save lives, but for most of us Lymies they are useless. They think we are there for pain meds. I am not on any pain meds and they asked me 5 or 6 times what kind of pain meds am I on...Percodan??? Vicodan?? Oxy ??? I was really insulted.
I know what you are feeling and I hope it gets better............
Posted by nan (Member # 63) on :
Kendrick,
I do have a friend who had the same panic/anxiety attacks when she started meds. She had experienced the anxiety as a symptom of her Lyme before treatment and it is very much a compnent of the Lyme itself for many.
The meds bring on a herx and when that happens symptoms are magnified. With anti-anxiety meds she was able to finally tolerate the meds and the anxiety improved to the point of being bearable.
I know what a nightmare it was for her. There were days when she could not be left alone. It was truly awful for her and I can sympathize. Many LLMD's are reluctant to prescribe these meds, and you really need a doctor who will work with your LLMD and prescribe some relief for you.
I wish you well...try to hang in there....get some help for the anxiety...(my friend had some awful panic attacks and thought she would die)... this disease does some terrible things to our brains/nervous system.
a hug for you... Posted by Al (Member # 9420) on :
I don't know if this will help but may offer some answers. I have all the same symptoms as you describe. I've been to the ER. about 7-8 times with the dizziness and pre syncope with a heart rate of 160 or so when these fainting events happen. The dizziness is always there to the point of spending much of the day in bed. I like you can just about make it around the house. I do have many of the other symptoms such as Ringing and a fluid feeling in the ears, blurry vision and on and on. I also have a big problem taking ANY meds.they make me much worse. I've been like this for 3 years. Now! This is what I've found, I had a Tilt table test and this was positive. What this means is that ,When standing my blood pressure drops, sometimes so fast i pass out. The DX. is (Neurally mediated hypotension). I've found that this is common with lyme and CFS. I was told to drink 8-9 glasses of water a day and take salt pills as my sodium levels are low.Dehydration is involved so the water helps this and the salt helps the kidneys retain water. This is a common treatment for this condition. There are meds. for this that help if you can take them. Search lymenet for (NMH) , You will find many people with this. Another test I had by an ENT doctor was an abnormal (Brain stem response) , This is a problem with the ear or brain stem; They don't know which one.I'm trying to find some answers on this. Other tests from an Endocrainologist found Low Renin,Low Aldosterone, Low Citrate,and low sodium. These are somehow connected to the Kidney,Adrenal, Pituitary. I do have some thoughts as to what some research has shown but I'm floundering like everyone else here. I am positive for lyme. I hope this has been helpfull at least. Al
Posted by Lymetoo (Member # 743) on :
Al gave you some really good info there. I would also suggest the tilt table test. There are meds they can give you to help with the fainting, etc if you test positive.
I would in the meantime try adding a natural sea salt to your daily water. It may help some.
I found that taking atenolol helped me. I still take it.
Posted by WildCondor (Member # 434) on :
Lyme disease can cause POTS and NMH (Neurally mediated Hypotension) as the bacteria cause inflammation in vagus nerve. A tilt table test will diagnose this, and treatment for the symptoms should hold you together enough to continue the Lyme treatment. I always got worse NMH when I herxed, Zithromax especially, worked really well.
POTS treatment has made all the difference in the world for my daughter and we now believe this has been a huge part of puzzle and her lyme is not as bad as it appeared.
Best Wishes,
Char
Posted by Nebula2005 (Member # 8244) on :
Kendrick
I've had anxiety attacks with all this **** but never for two days. I hate them.
I hear your desperation. I recently tried an antioxidant that made me get worse after three days, therefore not an allergic reaction but some immune thing.
When I get worse, and I'm not taking any Lyme meds right now, my neck gets really stiff and hot and my ears ring really loud and nothing helps the pain. And noises make my whole head twitch.
I don't understand how anyone can be as sick as I am, who has tried repeatedly to get help and not been able to get any.
I'm so tired.
You could try rehydrating with 1/8t of sea salt, 1/8t potassium chloride (sold as salt substitute at the grocery store) disolved in a cup of water. This is easy and safe. One of the CFS docs uses this.
Thinking of you.
Posted by Jellybelly (Member # 7142) on :
Hi Kendrick
POTS, NMH are all closely related and nearly identical in symtpoms to dysautonomia....I don't even know how they are different.
I posted a topic about 6 weeks or so ago on dysautonomia and a small book I found packed full of info on the subject of autonomic dysfunction (disfunctional central nervous system). It can cause ALL of the symptoms you have mentioned including the anxiety.
You will be shocked at how well you fit the picture. Very common in Lyme,but the majority of us don't realize what it is and that there is a name for it along with some form of treatment.
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