posted
I am recently diagnosed with chronic/neuro Lyme disease (July of this year). From 1991 to 2006, diagnosis was MS. Have been sick since early 80's. I have been on Amoxil 1500 mg total per day since middle of July. My body is super sensitive to meds and even some supplements and herbs, so we are starting out slow. This week, I have been having tremendous joint pain (which I haven't had at all this year up to this point) and numbness in left hand (which I first had in 1991 and also haven't had much of this year) - both of these symptoms make it hard to even type - my arms and fingers fatigue so easily. I am assuming from other posts I've read here that this is a herx.
My questions:
1. Does this mean the current dosage of medicine is working? too much? or it's not enough?
2. My doc wants me to start Tindamax now. Is it too soon to add this ABX? Should I give the Amoxil more time?
3. I am also to start Cat's Claw soon. Should I wait until after adding Tindamax? or add it sooner?
Sorry for all the questions, Lyme disease is still new to me. Have been fighting and researching MS for years. Kind of tired of all this medical stuff. I am also not used to being on any medicine. I have learned much from all of you and would really like your opinions.
Thanks, Jill
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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It does sound like a herx. I am also herxing right now and have been on ABX for just over 2 weeks. I have noticed increase in fatigue and joint pain.
To answer your questions; 1) It basically means the antibiotics are killing the bugs, I don't know what the recommended dosage of Amoxil is for Lyme, so I can't really say if It's not enough or too much but you should try to take the recommended dosage for Lyme.
2) It depends what you feel. Could you cope with adding another antibiotic at this time? If not, I suggest you speak to your doctor about it. Same goes for question three, it entirely depends if you feel you are ready to add another antibiotic. My LLMD usually adds an antibiotic every 2 or 3 months.
A Herx reaction is actually GREAT news, it means the ABX are doing their jobs.
Hope this helps. I found this good article earlier this week which you might find helpful.
First off, welcome to the big world of Lyme. I, too, have been sick since the 80s, and was just diagnosed with Lyme this year (after researching it on my own.) I've had a host of mis-diagnoses over the years too, including two tentative MS diagnoses.
There is no hard and fast answer to your questions, unfortunately. Different doctors have different protocols, and also individual differences figure in hugely to the big picture.
Yes, what you are describing sounds like it could be a herx. Those first herxes are often really severe, and for many of us, they get less severe in time. Some doctors are very in favor of pushing through a herx if possible, others suggest pulsing off the abx and/or lowering the dose when the herx gets to be too much.
I SO hear you on the numbness/heaviness/pain/fatigue in the arms and hands -- boy do I know that one from personal experience.
I don't in any way mean to disagree with the opinions of your doctor (I'm assuming you are seeing an LLMD?) -- but I'll share what my LLNP does. (For the record, I adore my LLNP and trust her implicitly! I've *never* felt this way about a healthcare provider before, except for my psychoanalyst.)
My NP generally starts with a broad spectrum antibiotic like Doxycycline for a few weeks. When test results come in for co-infections and such, she then tailors the treatment for whatever specific infections one seems to be fighting, including addressing any nutritional deficiencies or hormonal imbalances, etc. -- in my case, we moved to Bicillin injections, starting with 1x/week, moving up to 2x/week. I was able to tolerate the bicillin really well -- very little herxing. We then added Ketek, which laid me quite flat for nearly a week! I pulsed off that, then restarted it at a lower dose, and have been able to tolerate it very well since then.
As my Lyme symptoms improved, what started standing out symptomatically was that I might have babesiosis ( I tested negative for it, but the testing is really unreliable.) We decided to go ahead and treat it anyways based on symptoms, and that has made a huge difference.
She generally waits until one is tolerating the first part of the abx regimen well before adding in a cyst-buster (flagyl, tindamax).
My NP is very receptive to treating symptoms, too, especially during the first part of treatment -- so I have muscle relaxants, pain meds, etc. to make the treatment more bearable.
In addition to the meds, I am doing an herbal/supplements protocol. This is aimed at detoxing the body, correcting deficiences caused by the TBDs, and strengthening the immune system. Liver support, IMO, is a MUST while taking long-term, high dose abx, and also an aggressive protocol for fighting yeast/fungal overgrowth.
A word of warning about Cat's Claw -- that is STRONG stuff!!! I started out taking it and had to stop when I was herxing uncontrollably. Recently I added ONE capsule a day to my regimen (for the immunomodulating properties) and even that is too much for me to handle -- made me herx like the devil! I think it is a wonderfully powerful herb -- but my NP says she basically considers it an antibiotic due to it being so strong.
I don't know if any of this is helpful to you --
More or less, the short answer to my longwinded explanation is: treatment is hugely individualized, so there is no hard and fast formula that works for everyone.
My personal feeling is that it is important to respect the limits of the body, only progress as fast as you can handle, and address the whole picture, including detox and supplementation.
One thing that has helped me immensely with the neuro symptoms is vitamin b-12. It is hard to absorb orally -- you can buy sublingual forms that are a bit more effective than pills -- but I have chosen to go with the injectable form, which I do once or twice a week -- makes a huge difference. A lot of us are really deficient in that vitamin.
I'm sure the experts will be along with a lot of great suggestions soon --
Welcome and good luck!!!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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posted
Thank you both so much! Your posts are extremely helpful. I figured that I am herxing. As much as I don't like the pain and numbness, my biggest problem is overthinking everything - hence the too much/too little ABX question. My doc is great - an internist and naturopath, but he is new to lyme and so busy with so many patients, that I feel like I learn as much from all of you as from him. I've been sick for so long and my bottom line is that I always do what my body tells me to do, but lyme is so new for me, that I wasn't sure. I am going to push through with the Amoxil and wait on adding anything else for now. Thanks so much for helping me sort this out. Thanks for the warning about Cat's Claw!
Chris, the link that you provided was VERY helpful. No matter how much I read, there is still so much more helpful info out there. I have been taking some Motrin this week for the pain and that link pointed out that anti-inflammatories can make it worse. Geez - I didn't realize that! Good thing to know!
I am taking b12 as a Spectracell test indicated I was low in B12 - I'm usually have high B12 levels on the "normal" B12 tests. Sometimes I feel like the B12 makes me more tired, but I know it is good for the nervous system so I continue to take it.
Many thanks!!!!!!!!!! Jill
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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bettyg
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posted
tortie, did I send you a PM, private message with my 12 pages of newbie links including treepatrol's unlimited sites?
If not, please PM me, 2 people standing together in an envelope icon on top line of my name ok...
Have you printed our Dr. B's 2005 lyme treatment guidelines? I showed the link in the newbie's links I sent you earlier.
Also, please hit the enter key more often for short paragraphs of text and leaving one blank line between each paragraph for us neuro lymies. Thanks! Bettyg
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