HealingWell
Search Close Search
☰

Part 2 - Johnny_Five - 6 months of IV tx and still struggling hard.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/10/2017 7:11 PM (GMT 0)
Starting part 2 for Johnny_Five.

Link to part 1: www.healingwell.com/community/default.aspx?f=30&m=3801986

Last question asked: "There's only one more question I have - how long do I wait after stopping antibiotics to get the Bart/Babs Igenex FISH test?"


My response to that question is posted at the end of part 1, but here it is again, for those that wish to just continue from here:
"My understanding is that you need to wait at least 3 weeks from the time a person stops treatments and gets tested. "
Posted 3/10/2017 9:33 PM (GMT 0)
Bump
Posted 3/13/2017 11:20 PM (GMT 0)
Holy crap guys. I'm going to leave out names in the following story to protect identities: My Mom and I were watching a Lyme panel with some of the world's top Lyme researchers, and my Mom looked one of them up on the internet, saw his number at the research school he worked at, called him, and he answered! She hollered at me, "I've got ***** on the phone!" I freaked and had a short conversation with him. We've been exchanging emails.

I told him my situation and how much pain I'm in and I guess it struck a nerve. He told me he'd find a physician to treat me. The next day, I was cc'd in an email to one of the top treating Lyme Doctors in the world. (his waiting list is backed up till June 2018). "My advocate" asked the physician if he wouldn't mind flying down to see me since I cannot fly. The physician responded favorably, except that his medical license isn't valid in my state. The next day, the physician called me and we spoke on the phone. He offered to speak with my Lyme Dr, but even though he also suspects Bartonella, his first course of action is to always start the patient on high dose Tetracycline. I told him I was already on IV Rocephin and Minocycline (superior in my mind) but his treatment wouldnt change until after he saw how I responded. I told him I would talk to him after I got my Bartonella results back.

He also told me Galaxy Lab's Bartonella IFA test is better than Igenex Bart FISH test. What's been your experience with these labs?
Posted 3/13/2017 11:31 PM (GMT 0)
Don't know about the lab but suffering succotash you hit the jackpot! Congrats, let us know what the doc says
Posted 3/13/2017 11:36 PM (GMT 0)
Johnny can you provide the initials and state of where this top lyme doctor works? Just curious I have my own lyme doc. Thx.
Posted 3/13/2017 11:39 PM (GMT 0)
Sorry, Rikki, I have to preserve their privacy. I literally just googled "Lyme *state* *initials*" and the Dr. was like the 4th link lol.
Posted 3/14/2017 1:56 AM (GMT 0)
Ya jonny cool that llmd can be real peeps...orders some rifampin from adc and see how you do (its a love hate drug) careful if you try the floroquinalones
Posted 3/16/2017 1:51 AM (GMT 0)
bluelyme- yah, Rifampin and Azithromycin is the plan after I test (whether it's positive or negative). I think I'm going to go with just the FISH Bart (not babs) from Igenex, and then the Bart IFA from Galaxy Labs. I don't think we're planning on trying floroquinalones just yet.
Posted 3/16/2017 2:32 AM (GMT 0)
i was worried about floroquinalones due to my full body neuropathy. i did fine on Moxi.
Posted 3/16/2017 2:34 AM (GMT 0)

madisongrrl said...
i was worried about floroquinalones due to my full body neuropathy. i did fine on Moxi.

If you have the full body neuropathy - would there be a way to tell if the Moxi was worsening it?
I guess the symptoms you have would increase in severity?
Posted 3/16/2017 3:48 AM (GMT 0)

Girlie said...

madisongrrl said...
i was worried about floroquinalones due to my full body neuropathy. i did fine on Moxi.

If you have the full body neuropathy - would there be a way to tell if the Moxi was worsening it?
I guess the symptoms you have would increase in severity?

A lot of the people who've been "floxed" are on a few of the SFN FB pages. They developed full body burning and paresthesia symptoms. So my guess here is that this class of drugs probably create some type of immune response that damages the dorsal root ganglia in the spine because they have face and trunk burning in addition to limb burning.

I think people with our issues should proceed carefully and understand that a potential worsening of symptoms that might not be a "herx".
Posted 3/16/2017 3:51 AM (GMT 0)
Here is a website for those who have been "floxed".
/floxiehope.com/

I should add when I took Moxie, I took a gelatin product for tendon support.
Posted 5/8/2017 6:25 PM (GMT 0)
Ok guys.... sorry for not replying for awhile, but I had to stop my abx for four weeks to do Bartonella testing and then wait for them to come back. I finally went to my Lyme Dr. to find out my results:

Galaxy Labs IFA Serology Test Report:
Target:B. Quintana, Type: Serum, Result: Reactive, Titer: 1:64, Reference: Non-reactive
Target:B. Henselae, Type: Serum, Result: Reactive, Titer: 1:128, Reference: Non-reactive

Igenex Bartonella FISH:
Specimen: W Blood, Result: Negative

It was a world-renowned Lyme Dr. that suggested I get the Galaxy IFA Test, but my current crappy Lyme Dr. that suggested the Bartonella FISH (not to say the FISH is a crappy test). My current Lyme Dr. thought that because I tested positive on the IFA, I USED to have Bartonella; but because I tested negative on the FISh, I DO NOT currently have an active infection. I immediately started arguing with my Dr. and explained that in fact, that's NOT what that meant. I said that the FISH test, and most other Bartonella tests, miss the infection completely and that it comes down to a clinical diagnosis and current symptoms. She said she would think about treating me for it.

The next day, her secretary sent me an email saying she would put me on Levaquin for 1 month. I did research on it and decided that I already had enough horrific nerve and tendon pain throughout my body. I emailed her that I'd like Rifampin instead. She explained that it would decrease the blood levels of all 12 medications I'm on and that it was a bad idea. I did research of my own, came to the same conclusion, and told her I'd heal naturally on my own without abx.

So..... here I am. Still basically bedbound. I went out for one day last week for my girlfriend's graduation lunch with her family (I couldn't go to her graduation because I can't sit in low seats). We asked for a high-top table to accommodate my handicap (I can only sit in high seats). However, the next day my pain flared so badly, that I had to increase my meds by 1/3 for the next 2 weeks just to feel semi-comfortable laying in bed. I honestly feel like my life is over.

Traveler, I read your story about the herbs and teas you drank to help your Lyme/Bartonella. In a case as bad as mine, do you think it would still work?
Posted 5/8/2017 7:51 PM (GMT 0)
I'm late to the conversation but it has been a very interesting read.

A gigantic hug to you and your skateboard, Johnny.

I was lucky to have a CDC-pos IGeneX for Lyme but was only IgM positive. My LLMD (who is awesome) reassured me that IgG vs IgM is meaningless for Lyme. The immune response simply isn't reliable and I think that is pretty obvious… but that was your previous conversation - just wanted to toss that out there.

We could not get a positive bart or babs FISH. But Fry Labs did find *something* unidentifiable so we started treating it like bart and I've made a lot of progress. As others have shared, the testing for coinfections is every bit as unreliable as anything else. Most people have some strain of bart - it's pretty common in cats, fleas. And your sx suggest it.

Your MD is not an LLMD if she cannot clinically diagnose you. She might be a reasonable stand-in if she can coordinate w/ a real LLMD, but if not, you absolutely need to move on. We can help you find someone. And don't hesitate about calling the big guru back.

I've been on IV Rocephin 2 yrs and IV vanco for 1 yr… plus various antimicrobial herbs, a TON of detox, etc. I'm just a month from stopping the vanco - on my last round of Rocephin this wk. This process has been circuitous, counterintuitive, unbelievably comprehensive, exasperating, expensive, completely overwhelming and with very small wins every now and then. 4 yrs later, I'm a lot better and not done yet.

I did see very small increments of improvement on Rocephin but it took awhile. There is a lot of noise though and for someone like you, you're probably measuring progress through your pain level and it might be more complicated for you.

My Lyme-friendly neuro suggested that for most of his Lyme patients - the neuropathy is due to inflammation, so that is something to consider. Most of us are taking Japanese Knotweed or turmeric.

You seem to have a combination of nerve and joint pain, which could also be inflammation. Another thing you might consider is an antiviral. I had high titers for 4-5 common viruses associated w/ Lyme & Co. I don't have all-over nerve pain but I do have blinding nerve pain on my scalp and infrequently on my skin in other areas. The high doses of antiviral Rx knocks it out.

Also, as Traveler suggested, you need tone detoxing at the same pace you are killing stuff - otherwise. With all your pain meds, you have to be backed up - how is your GI function?

I think it's great to explore an all-herbal protocol. But again, you will need to incorporate a very successful detox protocol.

Your life is not over, this is just a PITA right now. Keep trouble-shooting… the solution is out there but it will likely take deconstructing your current protocol and rebuilding it.

-p
Posted 5/8/2017 11:27 PM (GMT 0)
Pirouette said: "you're probably measuring progress through your pain level and it might be more complicated for you. "

That is a very good point, P.!
I think that is what has happened for me. I have/had close to 40 symptoms from the beginning of my lyme journey...and because my nervous system issues seem to over-ride all others...I am often discouraged about my progress...or lack of.

I have about 10 or maybe a few more symptoms left...including the worse one - the nerve pain.
maybe, just maybe it is partly due to nerves needing more time to heal...than say the muscles, the joints, etc.

I have to keep reminding myself of the improvements.

I don't know if this is the case for you...Johnny...but you may very well have some healing going on...but it's not obvious yet. I just wanted to send you some hugs...and cheer you on..to keep on fighting.
Posted 5/12/2017 2:42 AM (GMT 0)

Pirouette said...
A gigantic hug to you and your skateboard, Johnny.
I was lucky to have a CDC-pos IGeneX for Lyme but was only IgM positive. My LLMD (who is awesome) reassured me that IgG vs IgM is meaningless for Lyme. The immune response simply isn't reliable and I think that is pretty obvious… but that was your previous conversation - just wanted to toss that out there.

Your MD is not an LLMD if she cannot clinically diagnose you. She might be a reasonable stand-in if she can coordinate w/ a real LLMD, but if not, you absolutely need to move on. We can help you find someone. And don't hesitate about calling the big guru back.

I've been on IV Rocephin 2 yrs and IV vanco for 1 yr… plus various antimicrobial herbs, a TON of detox, etc. I'm just a month from stopping the vanco - on my last round of Rocephin this wk.

Thanks for the hug. Right back at you smile I'm moving to Cape Canaveral, FL soon, so I'm going to need help finding a new Dr. At least I'll be near the beach smile My current Dr. is not that great, although she did have the sense to test my spinal fluid and found 2 Lyme specific bands there. Not many doctors would test that. BTW, I've heard from some top lyme drs that Vancomycin is one of the best, if not the best, abx for Lyme. Just FYI, I was on IV Rocephin for 6 months and it did absolutely nothing. I didn't herx at all.

I've literally never herxed. Not ONE time. I've tried IV Rocephin, Orals: Tindamax, Minocycline, Amoxicillin, Azithromycin and no herx. And you're right, I am very backed up from the opiates I take. I should probably drink more Aloe Vera juice (very good laxative for me).

Pirouette said...
You seem to have a combination of nerve and joint pain, which could also be inflammation. Another thing you might consider is an antiviral. I had high titers for 4-5 common viruses associated w/ Lyme & Co. I don't have all-over nerve pain but I do have blinding nerve pain on my scalp and infrequently on my skin in other areas. The high doses of antiviral Rx knocks it out.

Yes I have horrible nerve pain. Sometimes I stop my pain meds (all 6 of them) for like a day to see how the pain is, and I burn so badly everywhere, tingle so bad everywhere, that no one would be able to survive such pain. And I have a very high pain tolerance. I've been in 3 almost deadly car accidents, and I merely walked away from them. I was a powerlifter, and could lift weights much heavier than my body should handle. I played a game called "mercy" with friends larger than me, where we would interlock hands, try and force the other's wrist down, and whoever was in too much pain would call "mercy". I won every time. I would skateboard and have horrific injuries, but skate right on through them while my friends watched in amazement. This was all when I was dumb and in high school, of course, (I'm 30 now and matured). But this is just to demonstrate how much pain it takes to take me down. I went from a large, muscly fellow to a pale, scrawny shell of my former self.

And Pirouette, I have the same scalp nerve pain. It wraps around the back of my head and then to the top, and sometimes my forehead. If a strand of my hair touches my forehead, it hurts. I believe this is called occipital neuralgia. Let me give you a tip. My Dr. injects botox into my scalp, forehead, neck, shoulders, and back every 3 months and it helps the "scalp nerve-pain" you speak of.

BTW, what anti-viral med do you speak of? Do you think the Rifampin is a bad idea because it will lower the blood levels of all my pain meds?

I think I will do Traveler's chronic tonic, it includes Japanese Knotweed and I will add houttuynia for the Bartonella.

Girlie said...
I have about 10 or maybe a few more symptoms left...including the worse one - the nerve pain. Maybe, just maybe it is partly due to nerves needing more time to heal...than say the muscles, the joints, etc.

Sometimes nerves don't heal. However, I don't know if you've heard of CRISPR, but it's the new big thing in biology and genetics. Google "CRISPR nerve pain" and enjoy smile
Posted 5/12/2017 1:39 PM (GMT 0)
Johnny - Have you ever thought about mold exposure? It may be something to check out since it can ride right along with Lyme and make things very bad. Most LLMD's know to check for this. There's a urine test that my doc used but is very expensive (realtime labs). There are also some blood markers (www.survivingmold.com/diagnosis/lab-tests).

I also haven't really "herxed." I'm currently on mino/plaq/rif/bactrim. Feel no different. My doctor suspects chemical sensitivities as well as mold. I am not so sure about the mold but agree with chemical sensitivities. We purchased a new memory foam bed and I itched all over for 6 months. I'm pretty sure I have formadehyde allergy or something. I am moving as well - but back up north (from NC).

It will be interesting to see how you do in Florida. I know mold tends to be more of an issue there due to humidity. However, I always feel so much better on the beach.
Posted 5/12/2017 2:29 PM (GMT 0)
Johnny_five - I'm so sorry that I didn't see this thread until now.

Yes, the teas and other herbs are enough to handle this. I would suggest that you also use Lion's mane as well though, as it will help heal the myelin sheath that is usually there to help protect those nerves. Also Avena sativa is another really good herb to help heal and soothe the nervous system.

I do have to say to start off on the Lion's mane with a very low dose - herxing is more nerve pain/tingling/burning, but it does help!!! My tinnitus calmed down quite a bit even on low doses!

I actually enjoyed the taste of Houttuynia enough that I wanted to keep it separate from the Chronic Tonic tea - it tasted like regular Sun Tea!!

And, as Pirouette suggested to you, I also took a lot of support herbs - things like turmeric, ginger, and boswellin for inflammation, and because I have horrible intestinal cramping constantly, I also take a blend of licorice, peppermint, and white peony root to help control that, among other things. I was working with a TCM practitioner, so she also did a lot of acupuncture on me, which was absolutely required with my pain levels - like you, I could only be on my feet or sitting for a small amount of time (for me it was 7 minutes), and without the acupuncture, I'm not sure I would have ever made it past that.

So, support and detoxing is still a major part of healing with these teas.
Posted 5/14/2017 7:26 PM (GMT 0)

k07 said...
I also haven't really "herxed." I'm currently on mino/plaq/rif/bactrim. Feel no different. My doctor suspects chemical sensitivities as well as mold.

My Dr. suggested Levaquin, but I refused because I don't need to add tendon pain and rupture to the mix. I would try Bactrim I think. Do you have Bartonella? As for the mold, I doubt it's that. The problems started at my parent's house (pretty new) and I moved into a new apartment complex when the tendon issues started. It started with my Achilles tendon burning, then my wrist burning.


Traveler said...

Johnny_five - I'm so sorry that I didn't see this thread until now.

Yes, the teas and other herbs are enough to handle this. I would suggest that you also use Lion's mane as well though, as it will help heal the myelin sheath that is usually there to help protect those nerves. Also, Avena sativa is another really good herb to help heal and soothe the nervous system.

I do have to say to start off on the Lion's mane with a very low dose - herxing is more nerve pain/tingling/burning, but it does help!!! My tinnitus calmed down quite a bit even on low doses!

Please, do not apologize! I actually used to take Lion's Mane. So for the Avena Sativa and Lion's Main, do you take capsules or make tea? What dose?

Traveler said...
I actually enjoyed the taste of Houttuynia enough that I wanted to keep it separate from the Chronic Tonic tea - it tasted like regular Sun Tea!!

I'm much to lazy to make separate teas. I'll probably mix them all together. Is the dose located on your "tea post"?

Traveler said...
And, as Pirouette suggested to you, I also took a lot of support herbs - things like turmeric, ginger, and boswellin for inflammation, and because I have horrible intestinal cramping constantly, I also take a blend of licorice, peppermint, and white peony root to help control that, among other things. I was working with a TCM practitioner, so she also did a lot of acupuncture on me, which was absolutely required with my pain levels - like you, I could only be on my feet or sitting for a small amount of time (for me it was 7 minutes), and without the acupuncture, I'm not sure I would have ever made it past that.

Here is a list of support supps I take:

CDP-Choline (1 g)
Piracetam – 1.5 g
Alpha Lipoic Acid – 1200 mg per day
Benfotiamine: 300 mg (w/ 40 mg L-Leucine) daily
B-12 (Methylcobalamin) – 1500 mcg per day
CoQ10 – 200 mg per day
Milk Thistle – 1 g two x per day
Magnesium Glycinate – 400 mg every other day
Magnesium Taurate – 400 mg every other day
Banderol – 20 drops two x per day
Stevia Whole Leaf Concentrate – 15 drops two x per day
Cat’s Claw – 1500 mg per day
Fish Oil – (EPA) 860 mg per day, (DHA) 430 mg per day
Ester C – 500 mg per day
Coconut Oil – 1 tbsp per day
Turmeric – 1500 mg per day
N-Acetyl-Cysteine – 600 mg per day
Agmatine – 1 g per day


Traveler, do you think your symptoms are close to or mimic mine? When you say you can only sit for 7 minutes..... I can sit for hours, as long as I'm reclined. I can drive as a passenger in a car, but the seat must be all the way back. If I sit in a seat that is upright, for even 5 minutes, I start to experience pressure in the back of my head, burning on my scalp, pressure building in my arms and legs, tingling fingertips....the pain is so bad I must get up from sitting. But, oh no. It does not stop there. For the next 2-3 weeks, my pain is so intense that all I can do is exist laying on a bed. I feel like I'm plugged into a 10,000 V battery at all times. My head throbs with electricity, my elbows and knees are filled with fire ants, my neck aches. The pain is so bad I question suicide. At this point, I increase my Suboxone (of my own volition) to three times the dose it was before (luckily I save it for such occasions), I chew on Klonopin like its candy, and I try to just sleep for the two weeks until I return to baseline. I call these episodes, "The Devil's Flair". I get these flairs if I thrust my back during sex, if I participate in too strenuous an activity, if I walk for too long, or if I am in pain and stay in pain for too long. Let me explain that last one. If I am laying in bed for too long and I start feeling pain, I usually change positions to my stomach. However, if I do not change positions and I "stay in pain" for too long, I get a Devil's Flair that may last for weeks. Because of this, I have a very limited life. I am on 6 medications to control the pain (Gabapentin, Lyrica, Suboxone, Klonopin, Amitryptaline, Baclofen, and marijuana).
I also wake up every morning stiff as a board and with terrible arthritis. I must pry each body part up to get out of bed. My Quell (awesome TENS device) has done wonders for this.

Traveler, please tell me if your symptoms are anything like this. I am wondering if Myelomalacia (deadening of part of my spinal cord), which showed on my first MRI but disappeared on all 3 subsequent ones, is actually the culprit of my pain and not Lyme or Bartonella. However, if you experienced the same thing, then maybe it is just the Lyme and Bartonella (which I'd much rather it be since the spinal cord is unable to be regenerated quite yet). I speak with someone with Myelomalacia, and their pain is not as bad as mine. They also have weakness and inability to control their bowels and bladder, which I don't have either.

I recently moved and, although I got most of my friends to do the work, I lifted more than I should have (a few boxes no heavier than a gallon of milk) and when I do stuff like that I am in bed for a month and sometimes the increased pain stays forever, and I must increase my medication dose). Maybe the Lyme/Bart is causing my nerves to go haywire, or maybe not...... I'd like to lean towards the Lyme/Bart before I start Travelers Tea and herb treatment.

Thanks for your time smile

Post Edited (Johnny_Five) : 6/5/2017 11:30:32 AM (GMT-6)

Posted 6/5/2017 6:15 PM (GMT 0)
Hi Johnny_Five - As I said in the email - my deepest apologies for not seeing that you were asking me questions - and it's more than okay to email me to get my attention or to ask questions!

You said, "I've literally never herxed. Not ONE time." After reading your post, are you sure? What you describe is what my worst herx was like.

Like you, it was the sitting upright that made everything worse, and not just for the time that I was sitting upright, but for days or even weeks afterwards my nerve pain was completely disabling.

I could not drive, but I could be a passenger in a vehicle, if the seat was laid back, any over-exertion was like a electric prod being held to my spine that would last for days/weeks.

This was right after my failed trial of pharma abx, and I was herxing horribly - although I didn't realize it at the time. I stopped the treatments because I started passing out randomly, having seizures, my GI completely shut down, and so much more. It was total chaos in my body. I started detoxing only - and heavily and that slowly began to relieve much of my issues, but I was still incredibly sick and still house bound, just not suffering quite as bad.

I did not go far down the road of pharma pain meds, as I didn't want to end up on the really high powered ones - and, like with your experience, they weren't helping really anyway. Okay, so I was high from them - but I was still suffering horridly. I needed something that would really help lower my pain.

My hubby stumbled upon a Traditional Chinese Medicine doctor in our area (the only practitioner that would see me) and she started helping me detox and deal with the pain and other symptoms first. That was when I discovered the wonders of acupuncture. It relieved my pain better than anything that I had tried - and I do mean better than anything else I had tried! I went in weekly for the first 5 weeks, then every other week for the next few months for acupuncture and herbs to help me.

Slowly, I started to feel like I was regaining control over things. Then we started treating the infections. We went with Lyme first as I knew that I had severe Neuro Lyme, and although the herx was hard to get through, by the time I was 6 weeks into it, I knew that I had started something that was helping my body.

At 3 months into using the Chronic Tonic, I knew that I was not only going to survive it, but I was doing quite a bit better -so Houttuynia was added in. Boy oh boy, did I end up with the herx from H^ll!! It was rough, and I raised and lowered my dose many times during those first few weeks, but it wasn't long and the herxing subsided, and my improvements kept coming.

I was no longer needing to sleep during car travel to keep from being severely car sick. I could stand for up to 15 minutes (significant since that's double what I could stand just a couple of months previously), I could move around the house -I was actually getting restless because I had some energy!!!

The whole time, I worked very, very hard on my detoxing. Since that time, I've learned how to hone in my detoxing so that I can kind of know what I need to do for my body depending on what the herx symptom is at least some of the time.

Quite the long way around to say that for me, it was most definitely Lyme and Bart that were the cause of nearly all my pain. I also believe that my body was stuck in a pain cycle for a very long time, and it was the acupuncture that helped "unravel" that.

"Travelers Tea" - do you mean the Chronic Tonic?

And, again, my deepest apologies for not seeing these questions!!! As I said in the email, I've now subscribed to this thread so I will get email notifications when someone posts here. And please do not ever hesitate in emailing me if you think I can be of help!!
Posted 6/5/2017 7:09 PM (GMT 0)
Johnny - I tested IGG positive for Bartonella Henslae. I'm really not sure if it is causing me issues or not. I think I got it from a cat/fleas when I was 4. I developed a huge lymph node that had to be surgically drained. I'm guessing that is when I got it. The lyme I think came when I moved here to NC. We have quite the tick problem here. I am also IGG positive for Rocky Mountain Spotted Fever, which is common here.

Bactrim hits some people VERY hard but I've had no issues with it. My LLMD says bactrim hits persister cells as well (he is a fan of dapsone but I'm waiting on that).
✚ New Topic ✚ Reply