I started heparin and taking tindamax 500mg 1/2 tab three times daily on the 10th. For the past 5 days I have been on the couch feeling horrible and had muscle twitiching start. I have never had muscle twitiching before. My LLMD office nurse told me to stop the antibiotic and wait a few days then start back at a lower dose.
I have been on several different antibiotics since being diagnosed in June. I can't say I am a whole lot better. I stay continuously fatigued. On a good day I may function at 30% and always feel bad. Has this been the norm for some of you? I'm beginning to think there is something else wrong and it's being missed. I feel so bad all the time. I'm replacing cortisol and the thyroid so far is ok. Liz
Posted by hokie (Member # 14720) on :
I'm not sure that you've provided people with enough information to help you.
Having said that, it's horrible to try to type something meaningful when you're feeling terrible.
Have you been tested for coinfections? Treated for them? Have you been researching the best medications for various TBDs?
Do you have an LLMD? Do you have faith in him or her?
My dad took more than a year to start feeling better, so it could be that, but I'd hate for you to miss something important because you learn that for many people it takes longer to feel better.
Posted by METALLlC BLUE (Member # 6628) on :
quote:I started heparin and taking tindamax 500mg 1/2 tab three times daily on the 10th. For the past 5 days I have been on the couch feeling horrible and had muscle twitiching start. I have never had muscle twitiching before. My LLMD office nurse told me to stop the antibiotic and wait a few days then start back at a lower dose.
Who have you been treating with? You can PM the information if you wish or whatever you're comfortable with. I'm just curious to find out who has started using Heparin. I now "why" it's used, but I know of only a few LLMD's which use it, and knowing if anyone else does would be useful.
Your physician does seem to understand the basic principles of treating, especially when a strong Herxheimer reaction comes on. If you're feeling horrible, stopping treatment for a few days, even a week, is actually very productive. People improve faster by taking breaks, but most people don't know that.
Taking breaks during an intolerable Herx is wise, and then letting the body heal and detox itself (Or detoxing yourself with a some herbal or medical aids)then repeating the process. You'd have to research that or talk to your doctor to make sure it's appropriate though.
quote: I have been on several different antibiotics since being diagnosed in June. I can't say I am a whole lot better. I stay continuously fatigued. On a good day I may function at 30% and always feel bad. Has this been the norm for some of you?
Sadly, yes. Which antibiotics have you been on? The key early on in treatment (for Chronic Lyme)is to stay on a chronic antibiotic for about 6-8 months in order to suppress the infection and bring some good days into the picture. Often if switching antibiotics too fast, you don't get a chance to see if it works, since it takes about 6 to know in many cases.
Once it is known what you respond to, and you begin to get some consistency, then pulsing treatments based on Herxheimer reactions would probably be very useful, but this is just my opinion, and there isn't any real "science" to support it.
However, if I had to bet a leg on it, I'd say it would get people well much faster. If the Herxheimer reaction isn't happening, then the infection isn't dying. If someone feels good, but is no longer herxing after being on treatment for awhile, they aren't "getting better." The Herx is the key, and cycling treatment around it, I think is what brings a decrease in the bacterial load. Suppressing the infection is useful for severe cases where the person's body is actually being damaged from a long term out of control case. Once suppressed the person's body can heal, even if infected.
Then once healed up well enough, they can take some beating by pulsing, herxing, resting, pulsing, herxing, resting -- etc. You get the point.
That's my opinion though, and I'm only a patient.
quote: I'm beginning to think there is something else wrong and it's being missed. I feel so bad all the time. I'm replacing cortisol and the thyroid so far is ok. Liz
Have co-infections been taken seriously? Testing at specialty labs? Fry? Igenex? Bowen?
Posted by bejoy (Member # 11129) on :
You might want to consider if you are replacing enough cortisol and thyroid.
For energy you could also try: B12 injections or sublingual Green powder drinks like Natural Factors Enriching Greens Mitochondria supplements, including D-Ribose (do a search on this)
Herxing is hard. My worst symptom was exhaustion, so I understand what you're saying. You'll get to the other side.
Are you detoxing in the process?
It's a long road, but you'll get there!
Posted by mariarosa (Member # 15459) on :
I'm new to the forum. I am afraid of treating my chronic lyme because it is manageable now and it sounds like treating it doesn't mean it will ever go away anyhow. What will happen if I just treat the symptoms with PT and Advil? I'm ok if I do just that. How do I find an LLMD? My diagnosis is just from my regular doc based on Western Blot.