I have been sick for nearly 10 months now, and it took about 8 of those months to find out it was Lyme disease. (Hopefully I am on the right track now.)
5 weeks ago I started treatment for it, 2 types of oral antibiotics 2x a day along with grapefruit seed extract. After 4 days I started herxing...
For the past (nearly) 5 weeks now, I have been so sick that I have not felt well enough to sit up. (Laying down for most of 5 weeks is no fun, especially when you're laying down because you feel so terrible!) I will spare you a list of my symptoms, but it is mostly neuro symptoms - incapacitating dizziness is the worst physical part, second is the shaking that comes when I get up. The worst "other" part is that I have lost my mind, literally. I forget what I'm saying or doing from one moment to the next, mix words around, and can't keep my thoughts together.
After 4 weeks of no improvement, my Dr. took me off the med's temporarily. (Until I am functional again.)
After a week of no meds (and actually my meds were cut in half a few days before that) I have still not been able to notice a definite improvement.
I am doing lots of detox things my Dr. keeps suggesting, and she finally (today) prescribed something since I'm still so terribly sick. (Couch bound for 5 weeks, "not functional".)
I was this sick many times during the months leading up to a diagnosis, but NEVER for 5 weeks straight. This is really hard.
Posts: 60 | From PA | Registered: Jun 2012
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Since I have been so incapacitated by this all along, am I going to have "longer than normal" herxes through the healing process?
Have we done the right thing by cutting the medicine out temporarily?
Posts: 60 | From PA | Registered: Jun 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am so sorry. This has to be very difficult. Every person handles treatment differently because the disease hits everyone so differently.
Maybe you should try adding one med at a time when you go back on ABX. Also many people cannot tolerate GSE (grapefruit seed extract). You might want to hold off on that until you see how you are with the other ABX.
Do you have supportive family/friends to help you out? Have you tried lemons squeezed in water with a little stevia to help you detox? Also Alka Seltzer Gold helped me. Epsom salt baths can be soothing as well.
Have you looked into any support groups in your area? That might be a good way for you to talk to others who can offer support and resources.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Agree. Add abx and herbs one at a time.
Posts: 342 | From Philadelphia | Registered: Dec 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree with dbpei and jessiep: add one thing at a time. When you are fine on the first med, add something else.
Wean up s-l-o-w-l-y.
I had to take a billion medicine breaks...and that's ok. We have to listen to our body. Pushing through never-ending herxes is not helpful in the long run.
posted
Have you been tested for coinfections? Of course the tests aren't great, but it definitely sounds like there is more than just lyme involved. And if that is the case then you need to know what else you might have. Some treatment does treat more than one infection, but some infections need very specific treatment.
The dizziness of course makes me think of babesia.
Actualy it would be helpful if you told us what antibiotics you were taking -- some meds have more obvious side effects than others -- and you may just need to try different meds.
Also a more specific list of symptoms might help others give you more specific suggestions about what meds might work best.
It also sounds like you may have adrenal fatigue which requires specific nutritional support and sometimes symptom meds as well.
Sorry you are feeling so poorly. It can get better, but it does take time.
Bea Seibert
Note -- My personal opinion is that if stopping meds and detox does not help your symptoms then you either need much stronger nutritional support and/or stronger meds or different meds. What you are describing is not really a herx.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Ok, let me try to respond, because this could all be helpful.
I did not know that grapefruit seed extract could cause problems... I was still taking it which I stopped when I read that post and looked up more information. (My Dr. never said to stop taking it.)
My symptoms are mostly related to my head and inner ear:
- CONSTANT, incapicating dizziness -(For 9 1/2 months straight, like a light switch, all of a sudden was dizzy one day and it never went away. I used to think the best way to describe it was to say my head felt like it was swimming, but now it is more like a reeling - the room does not spin though.) The dizziness is not even touched by meds (like antivert)... it's like I'm taking nothing. - The dizziness is associated with a pressure in my head... feels like an altitude pressure but it happens when I'm just sitting still in my own house. - Dizziness made worse by noise... This is like a major understatement since the dizziness goes crazy with noise and I feel like I could melt into a puddle on the ground and am no longer a human being... I loose touch of where/who I am in time and space with noise. I wear an earplug when I'm not sleeping, and use a noise reduction headset on top of that when I need it. - Difficulty (inability) to move my head left and right. (Up and down is fine, left and right brings on the terrible dizziness where I loose touch with reality.) - It is ONLY my left ear that is affected. - Thumping in my ear when I talk - My own voice is one of the worst "noises" that makes me so dizzy. - Hearing my heartbeat, especially when I am "worse" in that ear - constant ringing (in that ear) - inability to think - slurred speech, swapping words around, this is worse when I feel worse, but after starting the meds it has been worse constantly, regardless of how dizzy I feel at the time. - Shaking, especially when symptoms are worse, and I have ruled out the the shaking is caused by the stress of feeling "worse". - Difficulty walking. (Walking brings on the terrible dizziness too.) - A limp that I can't figure out, but it is worse when I am feeling worse. - Often the pinky and half of my ring finger tingle/feel numb. - Some facial palsey (noticed by the neurologist and neurotologist, and I feel it sometimes. ) - Trouble falling asleep, and also being wide awake the moment I wake up, whether it is still the middle of the night or not. I am not 100% sure this is related to the lyme disease, but I'm pretty suspicious.
My symptoms differ in severity... I go "up and down", for periods of at least a few days. Except for noticing a few of the less noticable symptoms It took a while to figure out the tingling in my hand was probably related, or to pick up on the facial palsey - at first I just thought (actually explained this to the Dr.) that I was so sick there wasn't much to smile about and that's why my face felt funny. LOL. But aside from picking up on the occasional "new" symptom (which was probably there all along) my symptoms do NOT change. It is ALWAYS the dizziness that is the main/worst thing. (The fact that I have lose my mind for these past 5 weeks is a close second.)
I have been to my GP, an ENT, a neurogologist (an ENT who specializes in inner ear disorders), and audiologist, a neurologist who specializes in shaking, a counselor (as the suggestion of the neurologist who could find no neurological problem and called it stress), and finally a lyme Dr. (At the suggestion of my neurotologist who strongly suggested Lyme disease from the start, since it looked like an inner ear problem but could not be confirmed with any testing.)
I have been diagnosed with vertigo, labyrinthitis, stress, and a patulous eustation tube. I've been tested extensively for MS, SCDS (an inner ear problem), and have had many, many other tests. (including an MRI and CAT scan) I have been in the emergency room twice (before we knew it was lyme.)
You get a lot of suggestions when your main complaint is dizziness (over 70 diagnosable causes!), so I made a mental list of EVERY suggestion that was given to me, along with researching myself, and I tried a LOT of things. The only two things that actually helped were discovering the ear plug and noise reduction headset, and taking a very good multivitamin. (food-based, all inclusive, and has to be taken 3x a day) The Lyme Dr. thought perhaps the high levels of B vitamins in it is what seemed to cause my symptoms to improve.
I had the western blot test done by my neurotologist, and it was technically negative, but he explained a negative test result does not mean I don't have Lyme disease... he said with 1 positive band in the "active" result section, he suspected there was something going on, but he did not know enough to do more than put me on doxy for 10 days and say it would be a good idea to see a Lyme Dr, and he ABSOLUTELY thought my whole problem could by Lyme Disease.
I had the western blot done again through IGENIX, and it came back completely positive for having HAD a infection (even by the CDC standards), and with 2 important bands positive, 1 "indeterminate" for the current active infection. That was when the lyme Dr. started me on antibiotics, and said I would probably get sicker with the same symptoms I had been experiencing all along, though I might just "get better". I was hoping for the "get better".
She had me on doxy and ceftin, alternating with the GSE and acidophilis. (breakfast, lunch, dinner, bedtime)
I had previously cut out ALL caffeine (had gone to decaff only when I got sick, but cut out even that and chocolate a couple months ago), I am not eating sugar in any form except for rare exceptions... I am eating low carb as directed by my lyme Dr. I do not eat artificial stuff, and try to keep my diet healthy.
I am NOT fatigued. I do NOT have any pain.
I have the stray achey muscle, but I tend to doubt it is Lyme, unless I've had it for a LONG time and my "main" lyme symptoms have shifted. (Since my teenage years I have had muscle pain in my upper back... but I do not, as of yet, attribute that to lyme because I just do not know.)
To detox I'm trying to drink more water, I'm taking 9-12,000 mg chlorella a day, drinking the juice of a lemon every 3 hours (not at night), taking burber every 3 hours (20 min after the lemon juice), bathing in peroxide and epsom salts (though that seems to make me worse... left me shaking for 2 hours straight), taking 4000 mg of vitamin C a day, eating prunes, and probably more I'm not thinking about. My life kind of revolves around detoxing right now, though I am not improving. (The Dr. just prescribed something, but it has to be mailed from a compounding pharmacy, and is not here yet. I don't know what it is called.)
Ok, so there's the whole story... or at least a good bit more of it. I'm hoping that helps give you the entire picture so you can suggest more appropriately.
I have not been tested for co-infections. (yet)
Oh, and about whether this is a herx of not, I of course did wonder if my lyme disease just "got worse". But my Dr. was very clear (even now, as I've talked to her) that it is the same symptoms I had before that tend to get worse. The only thing that hasn't happened that she said would is the "getting better after the herx" part.
[ 12-07-2012, 12:48 AM: Message edited by: Mama2six ]
Posts: 60 | From PA | Registered: Jun 2012
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posted
Oh, and I believe the lyme COULD have caused the patulous eustacian tube because it can be caused by things that affect muscles... and the patulous eustacian tube CAN cause many of the ear symptoms. (Especially the thumping, ringing, but usually not dizziness.) It is possible that not all of my symptoms are lyme-related... could be in part due to this other thing. (Which, incidently, started, like a light switch, the day that I became dizzy, so it is more likely that the symptoms ARE the same thing than aren't - my ear Dr. strongly believes it is NOT the eustacian tube causing the problems, but I can't rule out any possibilities.)
Posts: 60 | From PA | Registered: Jun 2012
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posted
Today has been my worst day, ever, I think, since becoming sick. I have felt worse "physically", for a period of time at least, with the dizziness, but the mental stuff, today, made the day worse than ever before. My words (every word in a sentence, even) were coming out all chopped up. To not be able to think or talk coherently (and feel so horrible on top of it) was just over the top. My Dr. has me rating each day on a scale of 1-10... when I started treatment, I was at about a 5. (Due to the vitamins and noise reduction measures, I beleive.) Today was a 10.5. I went to bed and stayed there, because it was scarey and laying still is the ONLY way I know to make anything better. (My head was reeling, and I was also shaking, almost in a "seizure" way, which stopped after a while of being in my quiet bed.)
[ 12-07-2012, 12:52 AM: Message edited by: Mama2six ]
Posts: 60 | From PA | Registered: Jun 2012
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posted
I had a really rough time in the beginning of my treatment too. I found out later, much later that I can not detox Lyme or mold.
There is a test to find out if you are one of these people. It's called an HLA DR. All of the lemon water in the world will not help you detox if you have the genes. You will need a prescription binder like Cholestrymine or Welchol.
I agree with the others that you should test for coinfections, I was negative for Babesia and Bartonella though Labcorp. I retested with Igenex and was very positive for both.
I think it's very important to know what you are dealing with in the beginning. If your LLMD doesn't know about this stuff I would get a new one.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Like I said, a prescription binder like Cholestrymine or Welchol. These bind to the neurotoxins that are getting circulated by the bile. It works very well.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Ok, I think it might be welchol that is coming in the mail...
Today my Dr. says it is a "cytocline storm" and my autoimmune system is overacting. She's prescribing another med (donatol) for that. If it gets any worse, I'm to go to the emergency room to be monitored. Posts: 60 | From PA | Registered: Jun 2012
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
You can also take phytosterols which are not prescription as well as modified citrus pectin. I see a Dr well versed in mold and toxins- she doesn't use cholesteymine as she feels it isn't "natural"
She studied with Dr S- the mold guy!
Posts: 1276 | From maryland | Registered: Jan 2009
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