posted
I have been seeing lyme treatment almost for 3,5 years. I had bartonella treatment for 8 months and I recovered from panic attack and claustrophobia.
I have been seeing babesia treatment for the last 8.5 months. While I was taking Mepron as 2x1 teaspoon for 4 months, now I am taking it as 2x1,5 teaspoon. ( I take azithromicin 500 mg 1x1 with mepron) I have added 600 mg artemisinin (4days on 3 days off) and 2x1 tbl bactrim fort to the treatment since September. But after this adding process, I had serious herx problem. Moreover, I gave up using artemisinin later and took flagyl 3x1 instead of it. And of course, this is what caused the herx. I began to become depressive, and reluctant. Furthermore, I had pain on my neck and back muscles.
As adding flagyl led serious herx problem, I used mepron together with artemisinin, bactrim and then added flagyl to the mepron treatment on the subsequent week. The herx caused by flagyl still makes me afraid.(3x1 tbl day) I couldn,t use flagyl more than 4-5 days. Certainly, it is necessary for me to have a break because of severe herx.
There is improvement in babesia treatment but it is too slow. Although I had such serious herx problems I cannot see serious progress. But when it is compared to the past I can feel myself better in terms of some aspects.
I took coartem 3 days on,( twice times) ,one round in every three weeks. I belive that it is effective because of the herx problems that it created. My ECP level was 35 in May 2012, now its 9.
Both babesia and bartonella were negative as lab tests. But there were some clinical indications. Now, air hunger is lower but anxiety sometimes shows rise although it decreases and this makes me afraid. When anxiety increases depressive thoughts become intense.
I saw combine high dose ab treatment for lyme for 2.5 years. For the last one year, I have been using it as 4 days on and 3 days off . My CD57 level is around 290.
Although such a intense treatment process, recovering not enough some symptoms that psychiatric symptoms(depression and anxiety), sleeping disorders and memory impairment recovered some(but not enough) make me afraid.
Although I belive that I will win but sometimes feel hopeless. Meanwhile, I am active lyme patient for 18 years. I think I had it first when I was five years old.
Posts: 182 | From turkey | Registered: Jan 2008
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Frankly , I would advise treating the depression. Many of us here do! I take low dose zoloft and fish oil and methyl folate , which helps your body if your system does not properly convert the folate in your diet . If it does not you WILL have depression! If you take the methylfolate it can not hurt you . There is an inexpensive brand on amazon called Life Extension.
You may ask about the MTHFR gene test , if not available, consider just taking methylfolate , which supplies your body with the folate to make the proper neurotransmitters that affect mood and immune function .
Many of us here have the gene defect that indicates we lack an enzyme to convert folate properly . THIS IS CRITICAL.
Good luck !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Hi Ahmet -
I think you are doing very well in treatment. Your path is typical - slow improvement with some setbacks, and herxing when meds are added or increased.
Your abx protocols are excellent. Your labs show clear improvement. You must have a very good LLMD.
The depression and hopelessness you write about are diagnostic of Babesia for me. I am at my emotional worst when herxing or flaring for Babs.
I also have stretches of feeling very good, only to have many symptoms return when I add or increase meds/herbs. But this is necessary to beat Babs. Like its close cousin, Malaria, Babesia is a cunning little bug. It is adaptable and tenacious.
At some point, med dosages that were previously effective become merely suppressive. The parasite cannot reproduce, but the pathogen load is not dropping. You do get a nice break from symptoms during this phase.
When meds are increased, more parasites are dying. Big herx with lots of symptoms! This is good. This is progress.
You are right not to overdo a herx. If you feel you need to cut back on meds, and your doc agrees, that's fine. But you might be better off increasing detox methods to deal with inflammation and manage the herxing. Then you can continue on the higher dosages.
For me, lots of water with lemon or electrolytes does wonders. Infrared sauna is like a miracle. Also swimming, yoga and pool aerobics.
You MUST keep blood and lymph circulating. Gentle, full body movement will clear toxins faster and circulate blood in and out of your brain. We have swollen and clogged brains. You will notice huge emotional and cognitive improvement when you increase brain circulation.
I agree with the methylation advice. I've been working on this and my mood and energy have increased enormously.
I am starting Cholestyramine for the first time. Like you, I continue to experience Babesia herxing that seems above and beyond what I should have at nearly five years of treatment.
CSM is a strong Rx bile acid binder. It binds neurotoxins that the liver and gall bladder dump into the intestines. Patients with Babesia and/or mold exposures often find profound relief and improvement on CSM. Some say herxing increases at first, as toxins are sequestered and eliminated.
Mostly, you must keep going. People do recover. And your progress, as marked by symptoms and labs, has been excellent. Do not quit now!!
I am in pretty much the same boat with Babs and depression symptoms. I'll be sure to post my response to CSM.
You are not alone. I'm sorry you're having a difficult time. Babs' treatment sucks.
BTW, I've also been infected for around 20 years. So tired of this.
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Flagyl hits parasites, so I wouldn't be surprised if that was the herx you were experiencing.
It seems all of us have parasites, and those who have been sick for an extended period most likely have a significant parasite infection.
Without a doubt, I would suggest treating for parasites. After 20 years of dealing with this disease I am finally getting better from just treating parasites (I am 7+ months into it and have not seen this type of progress with anything else I've ever done.)
Wishing you well.
Posts: 2238 | From East Coast | Registered: Jul 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Babesia is a frustrating parasite. My two boys can't seem to kill it off. Dr. H. disucussed doubling mepron to 2 tsps. twice a day. Is that what you are taking? I had a hard time figuring out how much mepron you are taking.
I believe it was plaquenil at high doses (4 a day) for lupus that kept babesia in check accidentally. I am over babesia (no symptoms and good labs) but my boys have been treating it for 2.5 years.
Dr. H. also talked about the need for more research into babs treatment. He did discuss creptolypsis as an option for some patients.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
isn't 2 tsp twice a day now pretty standard? I thought they had figured out the 1 tsp twice a day was not doing enough.
Posts: 3528 | From US | Registered: Apr 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Stephen Buhner suggested trying cryptolepsis, sida acuta , and artemisisnin together for difficult cases .
Also , I have been taking ivermectin / praziquantel ( zimectrin gold vet version from Tractor Supply ) and air hunger is far better .
Some countries use ivermectin for babs and also parasites . Praziquantel targets lungworm , which is often found with lyme and CFS , along with filaria infections. Many docs ( esp in Europe ) are incorporating ivermectin.
If it were me , I would even try a modified version of SALT / C , starting with 1/4 tsp sea salt and same amt of Ester C . You could add that to your arsenal.
You have made a lot of progress so far . There are more things to try .
I think life is much better when we treat depression, which is a chemical imbalance . Our burdens do not seem as formidable if our brain has the right chemicals. Depression is something we do not have to suffer with !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
My children still tested positive for babs after 1 year of mepron, zith and artemisinin. When we took them off that and used herbal remedies, we were able to get rid of it. For them, they were able to kill babs with agrisept-L (grapefruit seed extract). They were fine until reinfected this summer several times with lyme and coinfections. We used GSE along with Klinghardt's lyme cocktail which is very effective against babs because the artemisinin is in a liposomal form and is combined with grapefruit juice so the babs does not become resistant to it.
You might just try a few drops of GSE to see if you herx. That would be a sign it is working. Go very slowly though as some can have very severe reactions to GSE since it hits both candida and babesia.
I have been dealing with a different water borne protozoa and have had improvement lately be starting the salt/C protocol. It is another tool to fight these bugs and many have healed lyme infections with it.
My family did 2 years of abx and did see improvement but could not fully heal. Once we switched to an herbal protocol, we were able to heal.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
If protomyxzoa is contributing to your problem, then following the recommended low fat whole foods vegan diet will bring relief. If you have trouble sleeping, that is often caused by PR. Babesia makes you want to sleep more. You usually have a low CD57 with PR and yours is high, so you may not have it but it sure wouldn't hurt to get tested.
If you have it and continue to eat high amounts of fat to support anti-malarial drugs, you can't take enough drugs to get you well. The PR multiplies 100 times faster with the fat. The pathogens are hiding in the biofilm it creates and the drugs can't penetrate it. You have to break the biofilm down.
Other things to break biofilm down are boluoke/lumbrokinase and EDTA.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I couldn t log in for a while because of this I couldn t write something. Sorry for this
I discontinued mepron 7 days ago and I began stromectol 1x1 day and I feel much better before. Probably Nefferdun right or my babesia load too much and herx reaction made me worse
I don t know if which one right but I will begin 7 days after m, w, f on( mepron 2x1,5 +flagyl 3x1 tbls +azithromycin 500 mg ) s,s ,t ,t off) antibabesia treatment.This week I will continue stromectol treatment. My memory is better after stromectol treatment(after 3 days later my memory impairment decreased)
Posts: 182 | From turkey | Registered: Jan 2008
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