thanks

What follows is what I was able to write down for the doc, if anyone's interested in my details. I appreciate any support you guys can give as I am terrified of going back on the doxy. And terrified of NOT treating it. I just did 3 days of coloidal silver which calmed down the burning in my head a bit but I'm pretty much on the edge here.

History

Noticed bite on right breast on 4/16. A black mark with a red circular slightly raised rash. The rash spread out over the next 5-6 days. It was homogenous, ie no central clearing. At its largest was 18'' from site of bite. it was warm to the touch-no itching or pain. Rash gradually cleared over the next 4-5 days. Tested Western Blot on Wed 5th. Tested negative Flu symptoms started that same day. Low grade flu symptoms lasted until the 21st of May.

Went to see infectious disease doctor on 5/13. She prescribed 200 mg of doxycycline a day for a month. Having read the ilads treatment protocols, i upped the dosage to 300 a day.

Four days later, May 21st i was sitting on the couch talking on the phone when my left wrist felt numb, quickly followed by some momentary numbness on the left side of my face. At the same time i felt very dizzy and faint. I thought i was going to lose consciousness so i called my girlfriend, who rushed me to the Er at Palm Drive. There I was given a CT scan which apparently looked all right, a carotid ultrasound which was non -surgical. Basic neurological tests were done (reflex, eye follow etc., 12 lead EKG, blood work was done. All came up negative and i was released with a diagnosis of a TIA. There is no history of heart disease or stroke in my family. i have 120/70 blood pressure, exercise regularly (or did anyway,) drink moderately, am I non smoker. I do have high cholesterol, a total of 250.

Saw my GP four days later, still with symptoms of heaviness in head, a''ferverish'' sensation in brain and dizziness with some vertigo. My doc thought TIA may have been a wrong diagnosis as the symptoms had not yet resolved themselves.He thought it could be a reaction to doxycyline, which can cause pressure in the brain. He asked me to get off the doxy for a couple of days and then gradually get back on it up to the suggested dosage of 200 mg a day. I did lay off for almost 40 hours but when i took just 100 mg, the following am I felt worse again. I saw ID doc again who suggested I try Amoxicillin, 1500mg a day for the remainder of the treatment.

Drove to LA on 5/28 and on the way down had some numbness again in the left wrist and left side of face. Very mild and not as much dizziness as the first time. It cleared fairly quickly but with a residual wrist ache.

We've already talked, so I'll let others give you their feedback.

Just wanted to say welcome, and I hope you get some feedback that is helpful. I know how scary this whole thing can be.

I did my 400 mg of doxy very gradually starting with 200 mg. I herxed on the 200 mg dose on the third day. It lasted about a week or so.

Nothing that landed me in ER mind you, but still felt like a truck run over me and spent most of that week in bed with alot of dizziness and brain fog. After I felt better I upped it to 300 mg. and then 400 mg. which I herxed on again, but not as badly this time.

Also, what doc dave said about the sun... I never had a problem until I hit the higher doses, but then it really affected me. I got sun poisoning real bad and would burn from just being in the car for a little while. So be very careful on the 400mg doxy.

I know what you are saying about the numbness, dizziness stuff. I had all that in the beginning too. Face numb, electrical sensations in my head, body jerks, face twitching, dizzy, lightheaded, flushing, and something that resembled a seizure where I couldn't move for a few seconds at a time. Also my heart beating irregularly and I couldn't breathe right. Very, very scarey stuff!!

My above symptoms greatly improved when I was treated for Babesia for 2 mos. before the Lyme treatment started. I think the two together really make you feel horrid.

The Babesia also caused daily low grade fevers, heart palps and nightsweats for awhile. Oh, and baaad headaches!

Things have gotten much, much better for me. I have been on abx since October but was infected for over two years before I got diagnosed. You are lucky to catch this so early.

Just remember the herxes are a good thing. (I know, hard to do) drink lots of water, get lots of rest and another thing that helped me was lemon juice in the water and magnesium.

Try not to be too scared. Remember if it gets too bad you can back off the abx for awhile until your body gets rid of the toxin load. Hang in there.

my story goes back to hiking the appalachian trail years ago in the northeast where we backpacked for weeks at at time-came out with all kinds of bites bruises, etc who knew? moved to phoenix and got desperately ill and was diagnosed with chronic fatigue syndrom then and the diagnosis's grew to about 25 of them and 50 doctors later b4 lyme was found. be glad you have a LLD--they are a rare brread and hard to come by--do as they say and get better!!

don't know if hell is avoidable I am in the middle of it on IV abx herxing and feeling real rough right now--but I know it is what I have to do to get better.

doxy works on some--my daughter took her doxy for one month and stillis sick 3 years later-she is now seeing my doc-15 with fibro and arthritis--does not add up

I do wish you luck and have no answer for you. They put me on oral mediiation for 2 months and then straight to IV so I am a newbe to all this!

Cathy

quote:

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Originally posted by bridude2001:
What follows is my basic history. The thing is, if what sent me to the Er was a herx, it was the scariest thing i ever experienced, as I thought i was a mini stroke and so did the guys at the ER. My new LLD (he's a n ND and a PA who works closely with an MD) thinks I Do have Lyme with some co-infections and has sent my tests to Igenix. In the meantime he wants to treat aggressively with Doxy, but after the last episode that landed me to the ER(on only 300mgs!) , I am too frightened to start. I keep wondering if it was the doxy itself that I had such a powerful reaction to (denial?) or is there an alternative to the Doxy. And why if I was infected just 6 weeks ago, would I have such an extreme reaction? Could I have already been infected ? And last of all, if there anything I could take to reduce the inflammation in my brain during the herx?

thanks

What follows is what I was able to write down for the doc, if anyone's interested in my details. I appreciate any support you guys can give as I am terrified of going back on the doxy. And terrified of NOT treating it. I just did 3 days of coloidal silver which calmed down the burning in my head a bit but I'm pretty much on the edge here.

History

Noticed bite on right breast on 4/16. A black mark with a red circular slightly raised rash. The rash spread out over the next 5-6 days. It was homogenous, ie no central clearing. At its largest was 18'' from site of bite. it was warm to the touch-no itching or pain. Rash gradually cleared over the next 4-5 days. Tested Western Blot on Wed 5th. Tested negative Flu symptoms started that same day. Low grade flu symptoms lasted until the 21st of May.

Went to see infectious disease doctor on 5/13. She prescribed 200 mg of doxycycline a day for a month. Having read the ilads treatment protocols, i upped the dosage to 300 a day.

Four days later, May 21st i was sitting on the couch talking on the phone when my left wrist felt numb, quickly followed by some momentary numbness on the left side of my face. At the same time i felt very dizzy and faint. I thought i was going to lose consciousness so i called my girlfriend, who rushed me to the Er at Palm Drive. There I was given a CT scan which apparently looked all right, a carotid ultrasound which was non -surgical. Basic neurological tests were done (reflex, eye follow etc., 12 lead EKG, blood work was done. All came up negative and i was released with a diagnosis of a TIA. There is no history of heart disease or stroke in my family. i have 120/70 blood pressure, exercise regularly (or did anyway,) drink moderately, am I non smoker. I do have high cholesterol, a total of 250.

Saw my GP four days later, still with symptoms of heaviness in head, a''ferverish'' sensation in brain and dizziness with some vertigo. My doc thought TIA may have been a wrong diagnosis as the symptoms had not yet resolved themselves.He thought it could be a reaction to doxycyline, which can cause pressure in the brain. He asked me to get off the doxy for a couple of days and then gradually get back on it up to the suggested dosage of 200 mg a day. I did lay off for almost 40 hours but when i took just 100 mg, the following am I felt worse again. I saw ID doc again who suggested I try Amoxicillin, 1500mg a day for the remainder of the treatment.

Drove to LA on 5/28 and on the way down had some numbness again in the left wrist and left side of face. Very mild and not as much dizziness as the first time. It cleared fairly quickly but with a residual wrist ache.

Saw a lyme doc here in Sonoma when I got back. My head was burning inside, like my brain was on fire. He gave me an IV of colloidal silver three days in a row . After th e first treatment the burning backed off considerably. He also prescribed 400mg of doxy for two months to start. I am supposed to start tomorrow but I am petrified. Should I ramp up, because I think 400 out of the gate could kill me, or start something else? Is it possible this is one of the coinfections? He thinks so, possibly ehrlichia. Any suggestions?
In other words , in my particular case, is hell unavoidable?

---

Hopefully early treatment will beable to save you yrs. of pain & grief that many of have endured. It took over 10 yrs. for me to get dxed.

Cathy, Kerry here, I had same problem as
your daughter. So far only givien 4wk. round of doxy. I got worse & stayed that way. Think it was not enough the chetes had lunch & dinner to help them mutate.

It is very frustrating. I know living alone & very sick right now myself. I am almost afraid do no think if I did get treated & herxed I could handle anymore on my own. Half the time feel like I belong in a hosp.

Try to hang in there find the right dosage you can handle then work your way towhat you can handle. Atleast someone is trying to help.All the doc`s I have been to are afraid to treat. Good Luck Keep a journel if you need to follow treatments & results.

Just wanted to welcome you. I am not up to reading what you wrote right now, but hope to later.

I assume you have a lyme literate MD. It will not be so scary if you do.

This whole thing is overwhelming. A friend gave me good advice. She said I needed to low to take things slow and easy.

I am still learning. HA! I still go back to my old self at times and pay for it later.

I also am learning to think of things as a process instead of going into automatic and trying to get done as much as I can in a short period of time.