I can't tolerate even a baby dose of a tetracycline or rifampin/cipro. Doctor sent in a prescription for Levaquin, but insurance doesn't want to pay for it because it's not a generic, and I can't pay nearly $500 for a 30 day bottle. Anyone know how to get a insurance company to pay (BC/BS)?
So, instead, my doctor has me starting HH for BLO. He strongly believe I have a BLO, and it is bigger than Lyme. I would agree with him. I was pleased to speak with Dr. Z himself, and I hope it improves the neuropsych problems.
Conservative approach for me now. Wish there was a medical center that would take me DURING normal treatment, but they just want to push you out. Oh well, I've always leaned towards more natural, less toxic stuff anyways, so if this works, it would be great.
Still keeping hope even though it's hard.
CD57 before treatment: 60 Now: 47
Not as bad as those that been sick for years, but I am young and I hit my one year anniversary not too long ago. It makes sense that they dropped because I feel like crap. Accurate marker if you ask me.
[ 01-27-2010, 08:07 PM: Message edited by: kday ]
Posted by Limeaid (Member # 22357) on :
Sending positive thoughts that this approach works for you. Take care.
Posted by Lemon-Lyme (Member # 19229) on :
quote:Originally posted by kday: I can't tolerate even a baby dose of a tetracycline or rifampin/cipro. Doctor sent in a prescription for Levaquin, but insurance doesn't want to pay for it because it's not a generic, and I can't pay nearly $500 for a 30 day bottle. Anyone know how to get a insurance company to pay (BC/BS)? .
I think Canada has generic Levaquin, if you want to try that option. Insurance won't pay for it, but it's cheaper than brand name from the US.
Posted by sickpuppy (Member # 23846) on :
kday, I'm super sensitive to drugs and everything. CD 57 has gone from 30 down to 13 in 4 months. Just tried a new therapy today to help me tolerate treatment better. It's NAET acupressure. They have an offical website. Too tired now to add links. PM me if this seems interesting. Posted by seibertneurolyme (Member # 6416) on :
Be sure you order the HH-2 -- cheaper than the regular HH and supposedly twice as strong.
However, the HH is just a start. In my opinion it will most likely take multiple herbs and multiple antibiotics to get rid of this if it is BLO or mycoplasma or the mystery pathogen seen by Clongen and F lab.
Regular bartonella may be easier to treat, but not sure.
As to the Rifampin -- a very tough drug especially if you have been untreated. When hubby tried this the first time I think it was 3 years ago. Back then he only managed to take 20 pills over 20 days.
Tried it again last year after doing Levaquin. Started at 50 mg and worked up to the full 600 mg over 8 months. Only lasted a month at 600 mg before crashing.
Retried the Rifampin again 3 months ago after more Levaquin and some Factive. Started at 300 mg for a couple of weeks and has been on 600 mg for 3 months. His doc just increased the med to 900 mg. He was running a fever over the weekend so may be herxing from this new doseage.
Hubby had the most success with very high doses of Cryptolepis and also is having some success now with Stephania tincture.
Might also consider something like Spirokete (Kroeger Herbs) with cat's claw and lauricidin from coconut oil or just very small amounts of coconut oil.
Good luck and keep trying. It seems like these bugs become resistant to some meds and even herbs within a month or two. Rotating multiple treatments seems to be the most effective in my opinion.
Bea Seibert
Posted by kday (Member # 22234) on :
Well, I'm going to call Dr. Z today to see if this is possible, or my subconscious is just screwing with me.
Anyway, I am on 5 mg Ativan a day and 1 mg Xanax as needed (I know, a lot). About three hours after taking my first HH capsule yesterday, I started feeling a mentally disconnected from myself. Shortly after I either had an adrenaline surge, a heart arrhythmia, or both. I couldn't tell, but I did scream out loud when it happened and chewed 1 mg of Xanax, a drug I rarely take. I also got a good taste of the herb in my mouth at this time, but the gross taste of Xanax overpowered it.
So, I took a second dose, thinking I just made my heart go crazy and maybe just subconciously caused an anxiety attack. Same thing happened at about 3 hrs. Mental disconnect with taste of herb in my mouth, and heart palpitations or arrhythmia. I screamed out loud again, but didn't take anything. It felt like the stuff got out of my system rather quickly after these attacks, and the herb taste would leave. I didn't take the third pill, because I just wanted sleep last night.
Of course the other drugs I have took cause similar reactions of much greater severity, and that's why I couldn't tolerate them. I wasn't on benzos before treatment. I did have Ativan as needed at some points in my illness. I would take 1 mg every week or two.
[ 01-27-2010, 08:06 PM: Message edited by: kday ]
Posted by sickpuppy (Member # 23846) on :
some of the above happened to me. it landed me in the ER. very fun. there i met a lovely doctor who told me i didn't have lyme and that i had joined a cult (the one that believes in chronic lyme). but anyway..........
as it's been explained to me, by more rational forces, when one has a leaky gut particles escape the stomach where the immune system attacks them. Hence, all the new sensitivities / allergies. are you having problems with foods you once tolerated as well?
i feel like you need to address the problems causing the sensitivity or it's gonna be a long LONG white-knuckle ride. AND we want to keep you out of the ER--expensive and demoralizing.
Maybe read some threads on GI support. Or try NAET acupressure for allergy / sensitivity resolution.
Posted by sickpuppy (Member # 23846) on :
p.s. pills should not make us yell out.
Posted by kday (Member # 22234) on :
I have been on a gluten and sugar free diet. It has helped me a lot gastro-wise.
However, yesterday, I couldn't eat anything, but I was starving. The only thing that appealed to me was a burger, so that's what I had. First time I cheated. I had to eat.
I found I don't have celiac, but I am allergic to wheat and yeast.
Posted by sickpuppy (Member # 23846) on :
kday, did u find those allergies through the skin prick type test?
Posted by WildCondor (Member # 434) on :
CD 57 doesnt mean much of anything, and seems to fluctuate wildly. When I was super sick mine was about 40, then it went up to 160 still feeling bad, and then now feeling awesome its 60 which makes no sense. Many have the same thing,....wild fluctuations...so it's likely not accurate. Go by how you feel!
Posted by kday (Member # 22234) on :
I am herxing now with fevers. Went into the doctors office this morning with a low-grade fever, and now it's gone. After the fever came the mental disconnected feeling started (probably depersonalization), and it is still there. I feel agitated, but I am resisting taking more benzos.
I am only taking 2 HH capsules a day right now, and I've been sleeping most of the last couple days.
For those taking 16 of these capsules a day (I've read this somewhere):
I think either you may be treating an infection that isn't there, or maybe you really do have a much more resistant bug. Or maybe I have something completely different (though I do have nearly every symptom of bartonella to a severe degree).
Anyways, I was a bit lucky to make an appointment during a fever/herx to have a doctor confirm it.
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