Long time follower - first LONG post

Hello

This became much longer than I ever thought it would. Sorry. Tried to split paragraphs.


I have been following this forum for about 6 months but this is my first time posting. On July 13, 2015 - I had a round, flat, red rash on my chest. It was not a bulleye rash. The rash went away in about 3 weeks and no other symptoms occurred immediately. The fall is when things went downhill. Random symptoms - anxiety, extra sore after workouts, retching, diarrhea & then on Halloween - the 2 month long headache started.

By chance after a week of the headache, I was reading a blog post on facebook that a friend of mine liked and it was about how she had random symptoms for years and it turned out to be lyme disease. All of a sudden - the memory of the rash came back and I was like "THIS is what I have". I went to urgent care & actually got them to do a lyme test plus co-infection test - all came back negative. The rest is a LONG story so jumped headed to February when I went to an LLMD for an appt. Didn't like him at all but he was going to run the IGENEX test along with a million other test - adrenals, hormones, etc. etc. Returned on March 7th - IGENEX as follows:

IGM
18++
39 IND
41 ++
83 IND

IGG
30 +
39 IND
41 ++
58 +

Not good enough for a CDC or IGENEX but good enough that this doctor said yes, you have Lyme. He prescribed 100mg of Doxy twice daily. I said "Is this enough?" He did NOT like that.

So here is how my protocols went with this doctor.

March 7th-25th
First 10 days of Doxy were fine – no herxing and no improvements, second 10 days – I was dizzy all the time. Could not function like this. Called Dr and he switch my drugs.

March 30th-April 11th
Augmentin XR 1000mg/62.5mg Tablet TWICE A DAY
Azithromycin 250mg TWICE A DAY
Hydrochloroquine Sulfate (Plaquenil) 200 mg TWICE A DAY

It was on this protocol that I noticed little cherry angiomas popping out on my trunk and upper thighs. I had a few of these throughout my lifetime but these were all new and I knew it was symptom of babesia. Also on these drugs, I started to get shortness of breath. So I called the doctor and he said - stop the drugs, go to the ER - it could be a blood clot. Really didn't want to do this but I did and needless to say all the tests came back fine - D-dimer included. Went to the doctor the next day and I asked about co-infections like Babesia and he said no but you've been on antibiotics for over a month now so you should be fine. He order a few more blood tests & called me on April 13th and said they were fine and essentially this phone conversation was a mutual firing.

Call a Naturopathic doctor practice. Got an appt. for May 11th. In the meantime, after the shortness of breath stopped, some symptoms that had left starting returning. So at this point in time - I restarted Augmentin only and started drops of Cryptolepis for babesia. I also bought Sida Acuta but did not get around to using that. The shortness of breath did not come back.

Really liked the LLND - she spent 2.5 hours with me. She put me on the following

Ceftin 300mg twice a day
Biaxin 500 mg twice a day
Hydrochloroquine Sulfate (Plaquenil) 200 mg TWICE A DAY
A BAB - 5 drops twice day.
Low inflammation diet/Gluten free


First few days - the shortness of breath returned but it wasn't that bad and I managed it. At this point my main lyme symptoms were vibrations throughout my legs & hands that came & went & sore knee joints.


Had a follow up phone call two weeks later on May 24th and told her about the shortness of breath. She decided we should pulse the antibiotics.


For 5 days - take 300mg of Ceftin THREE times a day plus one plaquenil. Then for the next 8 days before my next apt - take 500mg of Biaxin twice a day plus two plaquenil. I was fine on the 5 days of ceftin but as soon as I started the Biaxin again - everything fell apart.


Shortness of breath came rushing back. It was so bad that I was barely functioning and could not sleep because I'd wake myself trying to take a breath just as I fell asleep. I stopped the Biaxin & tried to restart the Ceftin but that was not good either so I stopped all antibiotics for this past weekend of 3-5th.


I seriously think I was herxing with lyme symptoms for the first time ever on Friday, Sunday & Monday. My shortness of breath cleared up a bit temporarily - slept just OK on Saturday night. Friday was very bad in the afternoon/night but Monday was the worst day since I've had this. I did a lot of detoxing and it helped. I had restarted the Biaxin on Sunday night. At this point I was getting about 3 hours of sleep per night for 6 of the last 7 nights & I was drained. Somehow on Monday night - I slept well.


Tuesday (as in yesterday) - I went back for an LLND appt. I told her this whole nightmare since we started pulsing. Essentially I became not able to function and I was ready for a meltdown because school is ending for two kids on the 16th & 22nd. Plus it's June with kids - it is the busiest time of year. On top of that my husband is working all the time to prepare for a big meeting & then he's going to be going to be at that meeting the week of the 20th for the whole week. I have to pull myself together.


She thinks the high doses of ceftin definitely broke something open & hence the herxing. She thinks the shortness of breath is babesia. I told her I was reluctantly to start babesia drugs such a malarone or mepron right now because I've heard nightmares about them. I told her my goal was to get back to a stable spot so I could finish off this monthof June. She agreed to this. We did up my A-bab to 7 drops twice a day and I'm still on cryptolepis as I have been since April 16th.


So she made me promise to stay on Biaxin for 7 days in total (so all I have to do is get to Saturday) plus add 500mg of amoxicillin three times a day. She felt like taking Biaxin for 7 more days would kill what he Ceftin stirred up. After next Saturday, I could just take the amoxicillin which would hopefully hold my symptoms in check. Well last night, the shortness of breath came back with a vengeance. I may have had 3 hours of sleep. I was a mess again this morning & I broke my promise - I haven't taken any antibiotics today.


As I was reading various posts while trying to nap & failing - I read that turmeric can help with shortness of breath. So I went & bought some. It was 1000mg of turmeric plus black pepper. I took that & I took a Epsom salt bath plus some Alka Seltzer gold. I'm still taking my A-BAB and cryptolepis. By noon time - I was very jittery. The shortness of breath has subsided a bit - don't know if it's from not taking the Biaxin or the turmeric helped. Couldn't nap because of the jitters.

So after all that here are my questions:

1) Am I foolish to hold off on treating the babesia with Malarone or Mepron at this moment. My fear is I will get more constant shortness of breath? Has anyone had a good experience with either of these drugs? My husband thought I was foolish to just be trying to get to a stable place. He thinks it's wasting time. We don't have babysitters or nannies and family can only help so much.


2) Do you think the jitters are from the turmeric or could they be from upping my dose of A-BAB?

I'm so sorry this is ridiculously long. It's just been such an awful week.

PS - only babesia symptoms are shortness of breath and the cherry angiomas. Tested negative back in November but never tested through IGENEX.

I think the jitters could be from upping the A-Bab.

I would not add in the Malarone or Mepron until you have a good detox regimen. You will just feel worse if you start it...and the toxins build up.
You need to be flushing out the toxins well before you start one of those.

Malarone and Mepron are both good options to treat Babesia - they should be paired with an antibiotic - Azithromycin is often used with it.

Mrseaglea,

Welcome to our community. This is a great place to share and vent. I have learned so much from being here.

Lyme and cos can be very frustrating, because it is hard to find a reliable Dr to treat it, it is costly, there are no set right or wrongs when treating and everyone responds differently to different treatments. Which means that it is hard to know the right thing to do!

Here is my take on your questions.

1) I haven't done either of those things. But I do think that you know your body better than anyone else. You also know your comfort level. If you need to slow down, in my humble opinion, you should.
A lot of people choose to go hard and fast to get it over with, but most believe that herxing just taxes the system more and prefer to go at it slow.

2) I think the jitters could be from a number of things. I know that with myself, I always get jittery when I am herxing, or just under the weather. I don't think that the turmeric would cause it. I have been taking it for quite a while and the only time I have the jitters is when I don't feel well. For instance I am fighting a tooth infection this week and I am very jittery and weak.

There are a lot of un answerables with Lyme. But with herbs and meds, I guess the only way to know for sure is to stop the treatment and see if it goes away.

I am sorry you are feeling badly and hope that you find what works the best for you.

And remember as Girlie said....Detox! It really does make a difference.

If you haven't read the "New to Lyme" yet at the top of the page, you may find it helpful to answer some of those questions.

Thank you for your input. I feel like pulsing the omnicef & biaxin opened a Pandora's Box & I want to shut it for a little while before deciding my next steps.

I actually do a lot of detoxing - I'm constantly drinking water & I put lemon in it, I've been doing Epsom Salt baths for a while now and dry skin brushing, I drink Alka Seltzer gold daily, I take refrigerated probiotics, & I put Apple Cider Vinegar into warm water and drink.

I am compound heterozygous for mthfr C677T & a1298c. I have know that for almost 8 years when I had two late miscarriages. I am currently taking Ortho Molecular's Methyl CpG. I know mthfr slows down processing toxins.

One thing I forgot that my LLND added yesterday was Resveratrol. I didn't look into that before but I just read that possible side effects are Jittery Feeling or Excess Energy! That might explain the jittery feeling which has since subsided. She wanted me to take two a day - one at breakfast, one at dinner but I skipped dinners.

As for the cryptolepis - I started that back in mid-April starting with 1 drop 3 times daily and I worked my way up to 10 drops 3 times daily. Yesterday, my LLND changed that to 15 drops 2 times daily. Sometimes I get a brief headache when I first take it but that subsides - I have had no troubles with it. And I have been consistent taking it every day!

I know this is going to be a long road and I appreciate forums like this to not feel alone and get some good ideas from others.

Great first post.

Regarding Malarone:

I've been on it for 7 months now. It's been the only pharmaceutical that produced a noticeable herx for me. It made my headache much worse, and gave me severe chills. I didn't have any negative side-effects, and the only noticeable effect it had on my blood chemistry is that it seemed to lower my neutrophil count a bit. Chills are gone 7 months in, but chronic headache remains.

Also, Malarone is very expensive. Cheaper than Mepron, but not by a lot. It's much more expensive than all my other drugs/herbs/supplements put together by a large margin.

If you want to take a good shot at Babesia, might I suggest Artemisinin? We had a discussion on the forum recently about taking it in high dose pulses. It seems to produce a herx, is completely natural, purchased without a prescription, and is fairly inexpensive (relatively).

www.healingwell.com/community/default.aspx?f=30&m=3645486

EDIT: can't remember how to make my links clickable :p

Post Edited By Moderator (Girlie) : 6/8/2016 5:11:53 PM (GMT-6)

Mustard Seed - to make a hyperlink:

put [url] in front of the link and then /url inside the second set of [ ] at the end of the link.


I did change your's into a hyperlink.

MrsEaglea -

Welcome and I'm so sorry you're struggling - it is tough but you are in a good place.

I totally understand your approach to get things to a "manageable" level through June and I'm glad your ND is on board.

You ARE doing a good amount of detoxing. But I wanted to echo the comments made (with your MTHFR heterozygous you'll need to do a little more--it's understood that your methylation and detoxing might function at 30% less than someone w/out those mutations.

- I'd find a way to sweat if you can (through exercise, yard work, sauna)
- You might want to look into a B12 supplement - I'd try a hydroxy form for now, if you do well on it you can work up to a methyl form.
- I'd also add more to your detox baths (including sea salt, hydrogen peroxide, maybe essential oils), a little water water and longer soaks... turn it all up a notch.
- I'd also implement a binder to help detox your gut - there are OTC binders like activated charcoal capsules and bentonite clay you can add to water. The best binder I've ever used is PURE cholestyramine, which you can get via Rx at a compounding pharmacy. Let me know if you'd like more info about this.

I totally agree with other's comments about the japanese knotweed - this is a critical component in my protocol.

"Air hunger" really has different meanings for us. For others (you) it's trouble breathing in. For others it's something different. For me, it's trouble exhaling. I have had a pretty reliable pattern of air hunger while on A-babs, and it's usually gone while I'm off it. So, I think you're going to experience the herxing until the infection load is down.

Hope this is helpful. Please let us know how you're doing.

-p