Untreated Babesia and Kaiser Permanente

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CharleneR
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 2/18/2018 8:56 AM (GMT -6)   
Hi Everyone,
I am new to posting here but I have been reading everyone's posts for the past couple years.
I was diagnosed with "chronic Lyme" in July of 2016. I have been bitten by ticks my whole life and thought nothing of it when I found a tick on my hip the previous March. To make a long story short, I thought I had the flu that wouldn't go away and doctors continued to treat me for those symptoms. By July my central nervous system was shutting down, a large knot appeared on my head and I was so sick that I was passing out and could barely get out of bed to go to work on most days. I honestly thought I was going to die because doctors didn't have a clue ( one of the neurologists offered me antidepressants). They kept giving me antibiotics and such to treat the symptoms but finally, my late husband remembered that I was bitten by a tick and called me and it was like the biggest relief because I immediately went to the internet and there it was I had every symptom but that was only the beginning of my misery.

My primary care doctor reluctantly tested me for Lyme and it came up as 41 IGG and 23 IGM were reactive so she diagnosed me with "chronic Lyme", immediately put me on long-term doxy. I responded pretty well and I was feeling better but my central nervous system was not improving. The left side of my body seemed to still be having problems (tremors, possibly Bells Palsy, pain, fever, night sweats etc...) So I started being my own doctor and finally figured out I had symptoms of Babesia. I went back and yes finally a positive result. She called me said I need to get in there immediately and something horrible happened she wasn't there and her nurse practitioner told me he couldn't treat me that I would have to go to a specialist ( In the meantime I am dying and I have to drive hours to a specialist and cant get off work) So to shorten this story, my infectious disease doc (somewhat Lyme literate) continued to give me doxy and then changed to cefuroxime without treating the Babesia correctly.

I started researching in 2017 and started taking silver hydrosol which was helping and I was feeling good for months but around August of 2017, I started going downhill (I really didn't notice how bad I was getting). My husband passed away and was in the middle of moving to a new town and this stupid disease was the least of my problems until something happened with my foot and I could hardly walk (In the meantime I had to switch insurance to Kaiser horrible mistake) I thought I had something simple going on with my foot and they tell me nothing is wrong (after X-rays, MRI, and a bone study). Now my left side is causing pain, numbness, tinnitus, neck, and back as well. More X-rays and MRI and nothing. I told Kaiser that I have Lyme/Babesiosis and my primary tested me for it and it was negative (No Igenex or western blot just a blood test (BORRELIA BURGDORFERI AB, SER,QL).

After reading here (God Bless all of you for your stories) and seeing so much advice I decided to order Artemisinin and try it. I have been taking 200 mg 3 times a day for about 1.5 weeks and after day 3 I got very ill (freezing, chills, and couldn't get out of the bed for 30 hours) so I hope that was herxing because yesterday and today were phenomenal days I feel great but I am not sure if this is the end.

I have been reading about Dr. Zhang and Dr. Buhners protocols and am self-diagnosing because my funds are very limited and I just can't afford to pay out of pocket and Kaiser is just WORTHLESS. So any advice would be greatly appreciated and thanks to everyone for all of the stories and knowledgable information.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 2/18/2018 4:04 PM (GMT -6)   
Hi CharleneR - welcome to our community.

I'm sorry for all your suffering these past years.


There are many members doing Buhner's herbs - either solely...or in conjunction with abx.

Are you aware that the Artemisinin needs to be pulsed? Otherwise an enzyme in your intestines could render it useless.

LLMD MR prescribes it on a 3 day on, and 11 off (for example) and try to increase the dosage to 1500 mg per day (500 X 3 times daily)

Not everyone gets to that high dose though.

So, while the methods differ depending on the LL Dr. - regarding the pulsing...it is generally accepted to pulse it.

Since you've been on it for 1.5 weeks, I suggest you take a break.

We encourage all new members read through the information contained in the thread: "New to Lyme?..Start Here!" It's packed full of useful information.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

gfields
Veteran Member


Date Joined Oct 2015
Total Posts : 960
   Posted 2/19/2018 1:25 AM (GMT -6)   
Very sorry to hear about your husband and your trials with Lyme. It is not a fun disease. Yes, you might want to take it a bit slower on the herb. It's probably killing off babesia and giving you a severe herx. Best to go slow and low. Figure out the smallest dose you can handle and take that consistently until you feel like you can titrate up.

One thing you definitely have going for you is your PCP! I've never heard of a PCP doctor declaring that their patient has chronic lyme disease. You've found a mystical unicorn with that doc. Hold on tight!

CharleneR
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 2/19/2018 5:39 PM (GMT -6)   
Thank you, Girlie and gfields. I was very shocked to hear her say 'chronic Lyme' because all that I was reading had been saying that traditional physicians don't believe it exists. I will take a break starting today and increase my dose. I am feeling so good that I don't want to quit because I am afraid that it will come back, but I don't want to lose the effects and I am going to continue reading and absorb all of the information that I can. (My memory is the problem I will have to write it all down).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 2/19/2018 5:48 PM (GMT -6)   
“Artemisinin 100mg is an herbal medication. Start at 2 or 3 pills 2 times a day for 3 days on the medication then take 11 days off. Continue this 14 day cycle. The goal is to reach 5 pills 3 times a day on the 3 days the medication is taken. I use artemesinin this way because the intestines develop an enzyme that destroys this herbal medicine if it is used longer than 3 days. Be aware the dose on the 3 days is quite strong. “
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 2/19/2018 6:17 PM (GMT -6)   
Bless your heart, Charlene! I'm so sorry for all you've been through and the loss of your husband.

That's wonderful news that you felt better after initially feeling worse with the artemisinin.

Sounds like you may also have bartonella.

I'm using Buhner's protocols and trying to treat Lyme, bartonella, babesia, and chlamydia pneumonia.

Ask all the questions you need to. We'll help in any way we can.

CharleneR
New Member


Date Joined Jan 2018
Total Posts : 4
   Posted 2/22/2018 1:59 PM (GMT -6)   
Thank you so much for all of this information. The more I read the more think I have Bartonella as well. I tested positive last year for Babesia but they didn't test me for any of the others. I had to ask them for everything as if I were the doctor. I would have thought that they would know some of this and what protocol to use.
I am now stuck with Kaiser and they don't acknowledge anything. I am on my own. I ordered Dr. Buhners CSA and it arrived today. I put one drop in a bit of water to see how I react. Today I have been feeling short of breath and it feels like I may have a fever off and on (not as bad as it was) and that is why I immediately took 1 drop of the CSA. I have not taken anything for 3 days since I learned that I was not dosing Artemisinin correctly. Seems to be coming back quickly. I am just so lost since I have no access to abx (I have leftover cefuroxime) and from what I understand that will not treat anything but Lyme.

I have also been having neck problems (last year they told me I had a pinched nerve this year Kaisers MRI said there are a few close to being pinched but their not) but my neck/ left arm has been killing me and I am so bloated, bloating only started about 4 months ago but it won't stop so I am not sure what to do about it.
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