posted
Hello everyone, I apologize if this is long, but I feel like I am at my wit's end with all of this. I will try and summarize.
In November, ironically, I was bitten by another tick and contracted another strain of Lyme. The new, terrible knee pain was what alerted me. The new test was:
IgM 41 and 2 other IgMs, don't remember them.... I think 23 and another.
IgE 41 IgE 58 IgE 66
I also tested positive for Rocky Mountain Spotted Fever.
I began treatment on doxy, azithro, and malarone, with saventaro, on 12/6.
By 12/20, something began to go terribly wrong. My limbs burned with nerve pain, I was exhausted, I lost fine motor skills in my hands, had terrible headaches and neck pain, and brain fog began. I began to sob randomly, for brief 2 minute intervals out of the blue. I was incredibly weak and considered going to the hospital. I have had herxs before and it did not feel the same. On the 28th, I began to experience migrating sensations in my limbs and my face/neck that felt like Novocaine was injected in patches.
Suddenly on the 28th, while driving, it was like a switch clicked off in my brain. Until now I had no cognitive problems except minor word retrieval issues. But after this switch was flipped, I felt it immediately. I now suffer from a sudden, alarming reduction in:
-Poor working memory/short-term memory- big reduction -Word retrieval issues/speaking/sentence composition issues -It feels like nothing in my environment is "getting in" -Can no longer visualize things in my head -Get lost in the car very easily -Can no longer organize anything/plan/problem-solve -Loss of internal monologue -Depersonalization and derealization -All of my senses are blunted except touch, which is elevated -Poor focus/concentration/attention/filter ability -Struggling with recall of all things -Emotional blunting -Strange emotional lapses into frustrated rage or sadness which resolve in 2 minutes or so
Anytime I try to do work that is complicated or requires concentration, I get a headache like I have just taken the SATs. Assuming I can even focus on it to begin with, and have unbelievable exhaustion.
I stopped ABs on 1/3/13, because nobody knew what was causing what anymore.
A lot of the physical symptoms have resolved/reduced in severity, but the cognitive symptoms have not.
I have been to many doctors, and have a variety of tests ordered. Nobody, including my LLMD, seems to know what has happened. A CT scan and MRI have come back normal. I am scheduled for a spinal tap in a week.
My question is: could a brain injury have occurred because of a herx/inflammatory reaction?
Could the ABs themselves have been too strong and damaged my brain/chemical toxicity?
Did the ABs not work, and thus the Lyme just progressed and invaded my brain? (This seems less likely, since the onset was sudden and global in the brain, it seems.)
Or has the Lyme set another process off, which is now damaging my brain?
I have no idea what to think, but it feels like I am losing my mind. I have now been sent to a LLMD, PCP, neurologist, cardiologist, have an appt with a rheumatologist, and possibly an endocrinologist. The symptoms seem too sudden and too severe to be a gradual thing.
I have a spinal tap scheduled for next week. I was in the ER the moment these symptoms appeared and they suspected neuroborreliosis, ordered an LP, but the neurologist cancelled it after assessing me and concluding "somatoform disorder," despite my Lyme blood work (and a picture of the rash!)
Any suggestions or help would be greatly appreciated.
Posts: 36 | From Connecticut | Registered: Jun 2012
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joalo
Frequent Contributor (1K+ posts)
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posted
Buried on page two.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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First I think you have multiple issues going on and that is why you are having so many symptoms.
Next I don't know why you are on malarone unless you also have babesia or another bloodborne parasite?
I personally think that there are 2 or 3 likely explanations. First would be that the doxy is not enough by itself for the RMSF and lyme. For the RMSF a stronger combo would be doxy plus rifampin. Have the RMSF titers been retested?
Second possibility is adrenal exhaustion -- can cause sudden symptom exacerbation. Could be related to nutritional status or if the antibiotics are not strong enough then your adrenals become exhausted with chronic illness.
Yes, a TIA is another possibility. You did not mention taking anything for coagulation issues -- with multiple infections hypercoagulation can be an issue. Lumbrokinase is one of the best options but there are other choices. Wobenzyme could help with both hypercoagulation and arthritic symptoms.
Other ways to increase bloodflow to the brain include high dose niacin or high dose arginine. Hubby had improvement from both at different points in time.
I am doubtful that a spinal tap will give more info because you do not describe the normal symptoms of encephalitis. You probably do have encephalopathy, but that is more a clinical diagnosis.
Personally I would take very strong antioxidants that cross the blood brain barrier. Things like high dose vitamin c and pycnogenol (pine bark extract) and CoQ10.
There is one other issue that deserves mention. In the presence of brain inflammation -- even low grade encephalopathy that can't be detected on an MRI or by spinal tap -- the body could be converting serotonin to quinolinic acid (a potent neurotoxin) by an alternative pathway. Per the Buhner book Healing Lyme resveratrol from Japanese knotweed blocks that conversion. Taking that supplement was very helpful for hubby.
Getting lost is a sign of an acetylcholine issue -- probably a deficiency. Lyme and also babesia rob that chemical from the body. Choline is one of the components of the myelin sheath and that would also maybe explain the nerve pain issues.
Lecithin is the cheap supplement, but phoschol from Body Bio is much better. Choline also helps the liver detox.If you can eat eggs then eat extra egg yolks -- no whites -- instead of or in addition to supplementing.
With any nerve pain issues one of the first things to check is a B 12 level and I would also check folic acid levels as well.
At least I hope I have given you some ideas to follow up on. A really good LLMD should be aware of all the issues I have mentioned.
In my opinion the antibiotics did not cause your symptoms -- it is more likely a lack of nutrients. Antibiotics can interfere with absorption but the pathogens also can deplete many nutrients as well.
Alpha lipoic acid is also something that might help with brain fog.
If you have the money for additional testing then I think the best test would be a blood slide from either Clongen lab or F lab. I think you need to know just what pathogens are present. Another possibility that is not addressed with your current meds is bartonella which frequently causes neuro symptoms. The best test for that is from Galaxy lab.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BoxerMom
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Member # 25251
posted
All of the patients I know with these symptoms have Babesia duncani. It is an aggressive strain of Babesia that causes extreme neural inflammation and encephalopathy.
It adheres to capillary walls and restricts blood flow, depriving tissues of oxygen and nutrients. It consumes our own nutrients and makes a potent neurotoxin.
Every Babesia duncani patient I've met has most or all of the symptoms you describe.
I have B.microti and had degrees of these symptoms during my acute phase of infection and when herxing on treatment. It was unreal how disabling it became.
I got rid of Babesia symptoms after one year of treatment. I relapsed 18 months later and resumed treatment. I've been fighting it ever since, but my herxes last only a few hours each day now.
I still feel like my brain inflammation is out of proportion to my pathogen load. My recent C4a came back at 57,000 on a scale of 0-2130. Yep, just a little inflamed.
My doc started me on Cholestyramine, a strong bile sequestrant that binds neurotoxins for excretion.
Holy Cow I have my brain back! Wow, wow and triple wow!
Depression is gone. Brain is clear. Energy is back. They will have to pry my Cholestyramine from my cold, dead hands.
Malarone and Zith was not enough for me. I currently take Bicillin injections, Zith, Mepron, Malarone, Flagyl. For herbs, Cryptolepsis, a parasite combo, and Vinpocetine. Plus usual vitamins, minerals, etc.
I'm in my fifth year of treatment and really trying to hit the deepest levels of infection. I would do IV if that was available to me, but it's not.
Undertreating has always been more problematic for me than herxing. I'm at my best when I achieve high blood levels of drugs and herbs.
I hope you have a great Lyme doc. If someone is suggesting a spinal tap, I'm afraid you don't. A re-infection is a BIG DEAL. New bugs, additional strains, and an already compromised immune system make for a challenging road ahead.
Get a good doc if you don't already have one. You are treatable, and with the onset of these symptoms after your re-exposure, you can likely fully recover.
Good luck!
BTW, some feel better with ice packs on their heads. Can be a useful temporary measure.
posted
Thank you for all the feedback! I will be referring to this multiple times, since I can't remember much of anything new after 12/28.
I am annoyed that NONE of my doctors want to run nutrition or endocrine panels on me at all. I have suspected malnutrition playing some kind of a role in this because I have been gradually losing weight without cause for the past year. I now weigh less than I did in high school, and am all skin and bones, but I eat!
My biggest concern is that I have had all these neuro symptoms physically, which have gradually increased in intensity (as they remained untreated while doctors kept passing me off), but never had I had any cognitive issues. I had a type of brain fog where I could function but felt exhausted or disconnected, but not a lack of processing.
I seem to have all the symptoms of a TBI sufferer, but nothing happened. Another friend who had chemo brain said I had similar symptoms to her.
I feel like I have some kind of amnesia or something, because I can recall and handle things that occurred/were learned prior to 12/28 normally, but not after.
The cognitive symptoms also weren't progressive- they came on in one day. (Which is why I thought I had a stroke.) That is why I wonder if something just went wrong in my brain. However, since the onset, they have become subtly progressive. It feels like whole chunks of my brain (and personality) were taken out. I used to be artistic and suddenly I'm very rigid and scientific, somehow.
Re: malarone- My LLMD kept asking me if I had babesia, babesia symptoms, and tested me for it. It came back negative, but he seemed really focused on babesia?, so I think that is where the malarone came in.
Re: serotonin- I didn't know it got converted if chemicals were low. I have noticed a bizarre lack of any emotion, and when I feel emotion, it is blunted, and lasts for like, 2 minutes! I have no idea what that is about, but it actually feels like whatever chemicals are there to sustain an emotional reaction are not high enough/depleted.
I feel like I have no adrenaline either. I used to be constantly wired. I actually got caught at the scene of a shooting (because I got lost), and had no adrenaline reaction at all. To me, that was scarier than the fact someone was waving a gun 20 ft from my car. It feels like I am on antidepressants that are way too strong for me, but also remove my capability for though, not just slow it down.
I get ridiculous eyestrain-type headaches when I try and do anything cognitive that requires more complex, executive functioning. It feels like I hit a wall (in my head, not metaphorically), and then nothing happens.
I have an appointment Monday with a new LLMD in NYC. I hope he can provide some answers.
CT was normal. MRI with and without contrast was normal. Spinal tap was done yesterday, and I am awaiting the results.
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
Sorry I have to repost again. Had to reread everything and absorb new things the second time through and remember my questions again.
For the supplements, are most of those available OTC? I'm not sure what doses would be appropriate, but I will bombard myself with them if need be!
I have had numerous bloodtests done, and everything constantly comes back in normal range. There wasn't even a change between when I was on ABs, prior to ABs, or when I went off of them. Nothing was elevated or lowered or out of range.
I'm concerned because a lot of my Lyme symptoms disappeared AFTER AB treatment ceased, which should be a good thing, but the cognitive ones did not. It almost feels different than having Lyme all these years, like some new things have developed.
Now I have migratory Novocaine sensations in my knees, but no pain. Also, my tongue constantly feels metallic and food tastes strange. I had another attack on the 20th of January, and since then, I am constantly unsteady on my feet, not from pain, but the feeling that my body is disjointed and my legs can no longer support me. My cognitive symptoms took another hit after that attack as well.
It's worth noting that my blood pressure is constantly low. 90/70? Maybe the highest it gets is if I bombard myself with caffeine or chocolate, and it hits 112/70? The cardiologist told me that my heart rate lying down is 70, sitting up is 90, and standing is 108, but that it shouldn't jump almost 40 points from lying down to standing. They said I must be dehydrated and need to increase my salt intake.
I've been sick with Lyme for many years, but I have never experienced this profound, systemic feeling that something is terribly, terribly wrong with my body and I need to be in the hospital.
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
Spirocheta... definitely sounds like babesia.. so keep going on that. It does not always show up on testing.
Have you tried backing off the meds to see if you improve? Sounds like a major herx to me. When we herx hard it is often a good idea to back off the meds briefly.
..
one and only canuck .. President Bush was treated by an LLMD.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CD57
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Member # 11749
posted
Really appreciate the knowledgeable posts on here....from Bea and Boxermom esp. Thanks guys. I have similar symptoms Spirocheta and have been in tx 6 yrs but never hit babesia very hard (only artemesinin). May be time to do it.
Most of my tx has been a combo of 2 orals which have not been helpful, and pulsed IVs 6 days per month for a few months. Not lastingly helpful either.
I also had symptoms come on in one day Spirocheta.
Posts: 3528 | From US | Registered: Apr 2007
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BoxerMom
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posted
I also experienced dramatic weight loss during my acute and herx phases of Babs. I became emaciated, regardless of what I ate.
Also low blood pressure, exactly as you describe.
Babs hits the hypothalamic-pituitary-adrenal (HPA) axis VERY hard. I pumped cortisol like crazy and went into a catabolic wasting state. I could not sleep at all. I was not making enough aldosterone to manage my blood pressure.
My cognitive function remained, but I was foggy, exhausted and emotionally blunted.
If you read up on TBIs you'll find that the brain makes waves that are inappropriate to the task at hand. So if you need an alert and analytical brain, you get a brain making sleep waves. It is just bizarre.
During my worst Babs' herxes, it took extraordinary effort to complete tasks involving the computer or paperwork. It was like my brain would just freeze in this apathetic and exhausted state. I would sit and stare and think, "This should be so easy. Why can't I just whip through this?"
When the exhaustion was severe, I had to lie down.
That feeling has not returned with this round of treatment. I still feel the depression and apathy when herxing, but my brain is much much better. Parts of the day are foggy, but parts are completely clear.
Babs is a nightmare. And treating makes it even worse, but (thank God) only temporarily. Detox and keep your circulation moving. That goes a long way toward reducing the inflammation.
posted
Sorry, I should clarify- I have been off ABs for a month, and the symptoms cognitively have not improved, but have worsened.
CD57- I am so sorry. The one day thing is the scariest part, I think. It seems to indicate that some sudden damage occurred.
Weird that you mention brain waves, Boxersmom. Because I had insomnia for a year or more before this, and was prescribed a low dose of Xanax before bed. It usually made me feel drunk, and then I was out! But since this incident, the Xanax makes me ALERT and aware. And brain functions IMPROVE on it. I wonder if it's reversing the "brain wave" thing. It doesn't make any sense that a tranquilizer would do that.
Another thing I have been wondering about is that quinolinic acid/serotonin thing. I wonder if the Xanax somehow stops that from happening temporarily.
I'm creeped out that we all have similar symptoms. What if it is from high AB dosages damaging us, and not the bacteria anymore?
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
I have babesia duncani and have those symptoms, as I described on the other thread (in part) but also the others you describe. I do think these could be related to b. duncani.
Xanax is also simply an anti-seizure med. I think some neurotoxins including the bugs themselves shift the brain into a seizure-y state (Dr. C. the ME/CFS doctor has described this phenomenon in ME/CFS: how the brain exists on a continuum btwn seizure and coma and ME/CFS keeps it shifted always toward seizure: the benzos seem to help protect the brain to some degree by temporarily shifting it back away from seizure). Dr. C. believes the benzos are neuroprotective in this way.
You might try taking even more xanax if your doctor allows it, and dosing it throughout the day to see if the brain perking effect continues to be effective.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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CD57
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posted
I have thought babs too, based on the info these posts have elicited. However, my LLMD said bart.
I read that Dr C study as well. I would be happy to pop low dose benzos all day if there wasn't a problem with tolerance build up and the weaning thing.
Posts: 3528 | From US | Registered: Apr 2007
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CherylSue
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Good info. Thanks.
Posts: 1954 | From Illinois | Registered: Aug 2007
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Judie
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posted
"Strange emotional lapses into frustrated rage or sadness which resolve in 2 minutes or so"
This happened to me on azithromycin. I felt like I was losing my mind (emotionally). It was all internal and had nothing to do with thoughts, just these waves of rage or being set off by something minor.
This stopped when I stopped the azithro. I'm not advising to stop it, this was just my experience.
It was an EXTREME emotional reaction though and completely different from my usual moods. I was also extremely tired and had trouble paying attention in a conversation.
Posts: 2839 | From California | Registered: Jul 2012
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posted
So, I went to see a very well-renowed Lyme doc in NYC. He is sending me for neuropsych testing, as my symptoms are continuing to get worse. All the testing is coming back normal.
This neuropsychologist is also located in NYC, and specializes in diagnosing issues related to tick borne/parasitic illnesses, degenerative illnesses, and also brain damage, so he will hopefully be able to identify the kind of cognitive damage that has occurred as well as maybe what areas of the brain it involves, and what its origins are.
The Lyme doc wants me to start intravenous treatment, but we are waiting for the final tests to come back to make sure it wasn't ABs that actually caused brain damage. He still thinks I have Lyme regardless of the cognitive symptoms. (He admitted that it was strange they came on in one day, but they are symptoms people with Lyme experience, just usually with a more gradual onset.)
He told me, and is the second Lyme doctor to do so, that he's leaning strongly towards babs at this point, even though I have never tested positive for it. However, I did test positive for Rocky Mountain Spotted Fever, so maybe something is going on with that as well.
I keep getting worse each week, so I hope this isn't something more serious.
Posts: 36 | From Connecticut | Registered: Jun 2012
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posted
Well, potentially good/bad news, depending on how you look at it.
All my tests are coming back normal, including the Lyme and coinfection tests. And I'm still getting worse. So I called the Mayo Clinic and applied for an appointment.
They told me they book based on need. Most people say the average wait is about 2 months. So, WITHOUT a doctor's referral or anything, I called, and they contacted me back. They want to see me in TWO WEEKS.
This is good news, but worries me because they scheduled it so fast. But hopefully they will have some answers.
Does anyone have experience with the Mayo Clinic? How is their policy towards Lyme? Are they more open-minded in their assessment of it?
Posts: 36 | From Connecticut | Registered: Jun 2012
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BoxerMom
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posted
Uh-oh. You may want to do a search on Mayo or start a new thread with Mayo clinic in the title.
Lyme patients seem to have universally negative experiences at Mayo.
dbpei
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Member # 33574
posted
Spirocheta, I have been following this post. You are doing a great job of describing your symptoms and the way things have evolved. This illness is so frightening.
There was a post when you mentioned that you had a metallic taste in your mouth. It made me wonder if you had been tested for heavy metals. Many of the symptoms of chronic heavy metal toxicity mimic lyme disease and coinfections. Also parasites can do the same thing.
What does your LLMD say about you going to Mayo Clinic?
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