To those who are 90% or more recovered, please help us out

After a month into the onset of symptoms I was given 10 days of Levaquin by my GP (they didn't know it was lyme but tests showed it was a bacterial infection of some kind). Did not help. Symptoms got worse because I was herxing on the ABX (before knowing what herxing was) and wasn't detoxing (didn't know what that was either).

A month later, I was clinically diagnosed with lyme by my LLMD after having a long list of lymie symptoms. Was on Doxy for a month. During this time I started on some herbs as well. I don't know which ones, my LLMD just gave me a mixture of herbs and this was before I was herb literate. Helped a lot. After that month I reached 60%. However, other issues arose. After a accumulation of about 40 days on ABX with no gut protection (I was ignorant of this as well), it tore up my digestive system and created a candida problem.

You will hear the saying "it gets worse before it gets better", and it's true. I refocused my efforts on candida. I hit candida hard (out of frustration). I went on a Paleo diet, high quality probiotic (made from powdered fermented foods, NOT "dead" probiotics made in a lab) and took RX antifungals. And like clock work, everyday around 8-9pm, WW3 ensued in my belly. Debilitating cramps, like an monster was going to burst out. But I would just get in the fetal position, bite down on something and weather the 1-2 hour storm. After my month long war with candida, I had weathered the storm. Candida was defeated. No more digestive issues, pain, cramps, and I could eat whatever I wanted again without the Crohns disease-like symptoms.

After this was taken care of, I started to really heal. I was then diagnosed officially through Igenex and Labcorp of Lyme, Ehrilicha, and Myco. During this time I really studied Buhner's literature and created a herbal protocol. The protocol is heavy Lyme but some of it crosses over to the other co-infections as well.

The herbal protocol I'm on is Cats Claw, Andiographis, Japanese Knotweed, cryptolepis, and hawthorn berry. In the past I also used Houttnyia in my protocols. For supplements, I take and have taken, zinc, vitamin D, NAC, collagen support, as well probiotics, and glutamine. Also coconut oil for any skin issues (bumps, rashes, etc).

Fast forward to the present day and I'm 90ish percent. The only lingering issue is some muscle twitching here and there and in really stressful situation a little bit of brain fog, and then a pimple or two popping up from detoxing out of my skin. However, I have been slacking on my collagen support and kind of paying for it now. Back on it.

So in conclusion, it's holistic approach. You need herbs to kill the bugs, herbs and supps to boost immune health, digestive health (where most of your immune system resides), and detox daily.

You have to address all these aspects of healing. There's no cutting corners or short cuts. Be thoughtful, dedicated and disciplined. Don't give up no matter how frustrating or inconvenient healing from lyme can get. Don't push yourself. Hydrate. Get sleep.

Well, I'm not to 90%, maybe 75% on average this year. There have been better days that feel like it. Was infected 25-30 years ago.

I healed my gut, candida and reflux '08-'09, before I went on to 1 year of ABX. Nothing special about ABX, but the gut healing before was important. I had minimal gut issues while on ABX, however candida did come back at the 12th month.

Today 1-1/2 years after ABX, my gut still feels well, thats half the battle. Nuero stuff is a lot better. Anxiety - that was awful, great it passed. Pain: upper body is 75% better, lower body - slow changes, time will tell.

Kind of repeating what dacarte3 said, what I've learned from people who beat this, and what I've learned dealing with this for years.

The Functional Medicine protocol for most healing of chronic conditions starts with your gut. You might know this already, or at least see it here more and more often. Its a step up and usually helps in ones ability to at least function and get out of the cellar. Thats what I got out of it. Leaky gut, candida, GERD - you know this stuff now from some recent posts if I recall. Prepares the playing field for the "bug hunt". With out doing this prep work, the "hunt" can wrench your gut which can make things a lot worse from what I've read.

I experimented with different probiotics (yeast based ones made me worse, gee I had candida too, go figure). Changed around "hot" herbs for candida. Nightly Magnesium that ONLY ends in "ate" for nervous system/muscle health and morning gut regularity. You know about D-Limonene (?). Identify food sensitivities by going on a very basic diet of a few neutral foods and slowly adding back to see what happens - while limiting or cutting out known unhealthy foods we consumed in the past. Even a little helps, but most can do more than a little. Going all out 100% healthy all the time- hard to do (bark and weeds are boring LOL). I love(d) pizza, but it kills me. No more tasty deep dish for me.

I'm still figuring out how to get to my next level, if it exists. Doing muscle repair was this years project, and will be ongoing probably. Moving forward slowly. Then maybe an herbal trial in the near future. Dont want to go backwards at this point.

Post Edited (astroman) : 10/26/2016 6:58:04 PM (GMT-6)

I did minocycline + tinidazole + septra DS + plaquenil

And just like that wham in 6 weeks I was like 95% well. At the time I also took nystatin, probiotics, meriva, ashwaganda, and a sleeping pill.

But I have been at this same level give of take a little up or down for well over 2 years now.

I did antibiotics for about 6 weeks and felt no change. I started on Beyond Balance and discovered the healing I wanted to feel. That made me focus on herbs and I turned to Buhner's protocol.

I already was a healthy eating person and I was detoxing before I even knew the word detoxing. It was cleaning my liver, kidneys, skin and just eating healthy in my world. So I was way ahead in detoxing.

I have always taken a huge handful of vitamins and supplements daily, so that routine was already down. I just needed to add a few that would remodulate my immune system and a few to help with the damage that lyme was doing to the collagen in my system.

I think I healed really quickly compared to all the stories I have read on this forum. But no matter how quickly you heal, it never seems fast enough. You still have missed out on some things in life because you are too ill to go or do. So sad.

It will be 3 months tomorrow and I have not taken any lyme herbs. I am doing super well, but trying now to get back my physical body. I was not one that could exercise when I was sick. When I was sick, I was sick. I did not do much at all. Everything hurt. Head pain was the worst for me and it debilitated me to the point where all I did was sit here at the computer and very slowly read.

K07. I think the mino Tini every other day helped. But the combo I did below helped the most overall, they were taken continuously.

I came into this mess from a relatively healthy place. I'm a lifelong avid exerciser, eat mostly organic, and have daily probiotic intake in the form of supplements as well as kefir. I also take supplements for general health. I later learned that some of them also help with detoxing.

For as proactive I thought I was being with my tick bites, it seems my journey was comprised of 20/20 hindsight moments.

I found a female deer tick attached on my left hip when I got out of the shower in April 2014. At that point, I was only aware of CDC info that Lyme manifests with a bullseye rash. The tick was easy enough to remove and I circled the area of the attachment to watch for the development of a rash that never occurred.

My hip stung on and off for a week and I thought that was the end of things....I'll never know if that was the case.

That July, I found a nymph deer tick inside a tiny pimple that had been on my abdomen for a couple days. I'd learned enough about Lyme by then to know to ask my GP to send the tick out for testing (she mentioned LabCorp sending the tick to a lab in CA). I also requested treatment even though I didn't have any symptoms.

Unfortunately, LabCorp just identified the tick (sigh).

I took my 21 days' worth of 100mg BID doxy and developed a stiff neck on the 2nd day of treatment. I developed a couple of other mild and weird symptoms that my GP just nodded about when I shared them with her.

She didn't know to extend my treatment and I'd just become aware of ILADS treatment recommendations.

I was having a hard time understanding just how the recommendations related to my situation and didn't push for further treatment.

Bottom line, the weird and mild symptoms continued but were concerning enough to me that I sought the advice of a ILADS-referred LLMD. My appointment with him was 8 wks. after the 2nd tick incident.

You can see the progression of my treatment/level of healing in my signature.

During the time I was under the care of the LLMD, he encouraged me to continue with my daily exercise because exercise strengthens the immune system.

He wasn't too aggressive with my treatment because he thought my immune system was taking care of the bulk of things. I only took 1000mg TID Amoxicillin and 150mg Doryx (delayed release doxy). I since learned he should have prescribed Probenacid along with the amox to help keep it in the bloodstream...and it seems that amox and doxy shouldn't be prescribed together because they can cancel each other out (sigh).

It's entirely possible that the treatment I received from my GP and LLMD promoted the development of persisters (blech).

I've come to think that my LLMD was referred to me by ILADS probably because he went to a single conference. He considered biofilm "too new" of a topic to address and let me decide what supplements I wanted to take.

I took GSE (Grapefruit Seed Extract) during my time on abx in the hopes it would help with cyst form. I took BioFibrin and then Serrapeptase to help with biofilm.

I also took Monolaurin for over a year.

My long-standing thyroid disease became more difficult to manage once I developed Lyme and, if anything held me back, it was my thyroid levels going wonky. Low thyroid negatively impacts the immune system.

Despite monthly thyroid labs, I found myself needing dose adjustments that often as well.

The times my thyroid went really low were the times my healing seemed to stall. There was much "life stuff" happening throughout my treatment as well and I suspect that also slowed healing down at times.

It's been a very long road to rid myself of the last 10% of my symptoms. My story follows what Bryan Rosner describes in his book "Freedom from Lyme Disease" - that the last 10% of healing can take longer than the first 90%.

Throughout my time on abx, Cowden and then various forms of Buhner, I continued to increase my detoxing. The thread I'm linking below contains a summary of what I did and now do for detoxing:

www.healingwell.com/community/default.aspx?f=30&m=3602759

Symptoms came and went.....some came back for short visits and left. I've experienced 30-40 different symptoms throughout treatment (thankfully never all at the same time). I'd say there was a time when I was regularly dealing with 10-15 different symptoms per day and they were all relatively mild (thank goodness).

The number of symptoms and their intensity slowly decreased over time. None of my symptoms lasted all day but I had instances of different symptoms at different times of the day with no true pattern.

When I started a modified Buhner protocol (fewer herbs but higher doses 4x daily instead of 3) in early August of this year, I was dealing with urinary urgency, sections of my face going numb and light twitches in my lower legs.

The urinary urgency seems to be firmly in the past (that was one of my first symptoms to develop when I was on abx) and the facial numbness/leg twitches have lessened in intensity and frequency (but still occur daily).

I recently learned that women usually require more aggressive treatment and my current protocol most likely explains why I'm finally getting rid of those lingering symptoms.

Sorry my story ran so long. I guess that's what happens when a particular story runs longer than 2 years lol

Huddie said...
This is such a great post. I love the healing posts and they give us hope. Thanks for sharing your stories. My goal is to be abel to contribute to one of these one day! You guys are inspiring.

Me too Huddie!

Thank you to those who are now doing well and are staying involved on this site to pull the rest of us to the other side.

I just can't believe how much my symptoms keep changing while in treatment. If it weren't for this site, I think I would have had myself committed. The only thing 9 doctors would tell me is that it is anxiety. Okay, but why? No answers for that, but I could probably be on 20 different prescriptions if I wanted to be.

Huddie said...
Sissy,

Not to hijack the post but I want to talk about your anxiety. It is very common with lyme. Did it only come out once you were diagnosed? I told my LLMD it was like a flip was switched and he said that is exactly what it is like. What has really helped lower anxiety: no caffeine, no garlic (stimulant), no sugar at all, limit toxic people!, meditate, read! Two books I love are called 'Breaking the habit of being yourself' and 'Placebo' both by Dr. Dispenza. They are about how powerful our thought are. Essential oils also help. Limit TV. I never watch TV at night. I watched all three of the debates and had insomnia each night. It was like I could feel the tension. I also take a low dose valium for insomnia nights. Perhaps ask your LLMD about that. I'm all over the place now but Sleepytime tea or Yogi bedtime tea also help. GL!

It was the anxiety that made me go looking for answers. I have had random things for a few decades that would come and go and I just leaned to live with them and not give them much thought....fibromyalgia, IBS, carpal tunnel syndrome, plantar fasciitis, irregular heart beat, hormonal issues, hypothyroidism, serious muscle spasms, etc.

Out of the blue, I was hit with dipilitating anxiety. I had to take a leave of absence from work for a while. I was put on Xanax and it never did anything, so I am now weaning off of it. The anxiety started 2 1/2 years ago. I have a very simple life right now...no violent TV, do not read or watch the news, no caffeine, no gluten, very little sugar or processed food, meditate and pray, use EO, good sleep hygiene, etc.

I have been using more and more of the detox methods and I am currently on antibiotics, transfer factor lymplus, curcumin, milk thistle, vitamins, probiotics, red root, etc. My sleep is gradually getting better and I hope with more and more treatment it improves and the anxiety leaves. I am already doing better than I was a month ago.

I have also been increasing the NatureThroid and I think that is helping me as well.

I will NEVER touch anoth Benzo once I am off this one! It has done nothing but cause me issues! I am glad the Valium is working for you, but no thank you. I had no idea what a Benzo was until after I was hooked on it. My LLMD is the one monitoring my taper and I highly doubt he would be too eager to suggest another one.

Here goes my long road. Got to 90-95% back in Dec 2014 and weaned off ABX in March 2015. Relapsed May 2015 and ramped back up w/ ABX and more herbals for past year and a half. Almost back to 90% again. Supplements and herbals listed after ABX. May never go off ABX again.

Wouldn't recommend this to anyone.

9/24/16 to Present: Pulse Ceftin and Bactrim 2 weeks on/off.
7/28/16 to 9/23/16: Pulse Ceftin, Bactrim, Diflucan 2 weeks on/off.
7/7/16 to 7/27/16: Pulse Ceftin and Bactrim 2 weeks on/off. No refills left for Alinia
5/9/16 to 7/6/16: Pulse Ceftin and Bactrim 2 weeks on/off, Alinia full time
2/29/16 to 5/7/16: Nystatin, Cipro, and Plaquenil full time; pulse Ceftin 2 weeks on/off
2/15/16 to 2/28/16: Nystatin, Cipro, Tetracycline, Plaquenil full time, no pulse.
12/7/15 to 2/14/16: Nystatin, Cipro, Tetracycline, Plaquenil. ABX pulsed 2 weeks on/off
11/26/15 to 12/6/15:Nystatin
9/23/15 to 11/25/15:Tetracycline, Plaquenil, Nystatin (liquid)
7/31/15 to 9/17/15: Rx Cryptolepis, Cipro, Minocycline
7/18/15 to 7/30/15: Rx Cryptolepis, Cipro
5/21/15 to 7/17/15: Rx Cryptolepis
4/16/15 to 5/15/15: Diflucan
3/19/15 to 4/15/15: Nystatin
2/1/15 to 3/18/15: Minocycline, Nystatin
12/17/14 to 2/1/15: Minocycline, Plaquenil, Nystatin
12/09/14 to 12/16/14: Plaquenil, Nystatin,
11/19/14 to 12/8/14: Plaquenil, Nystatin, Levaquin
11/12/14 to 11/18/14: Plaquenil, Nystatin, Minocycline
10/10/14 to 11/11/14: Plaquenil, Nystatin, Diflucan
9/8/14 to 10/9/14: Minocycline, Plaquenil, Nystatin
8/4/14 to 9/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
7/8/14 to 8/3/14: Plaquenil, Nystatin, Valtrex
6/8/14 to 7/7/14: Minocycline, Plaquenil, Nystatin, Valtrex
4/19/14 to 6/7/14: Minocycline, Plaquenil, Nystatin
4/2/14 to 4/18/14: Doxycycline, Plaquenil, Nystatin
3/10/15 to 4/1/24: Coartem (last dose taken 3/26/14 am), Nystatin
2/6/14 to 3/6/14: Doxycycline, Plaquenil, Rifampin, Nystatin
11/23/13 to 2/5/14: Minocycline, Plaquenil, Rifampin, Nystatin
11/9/13 to 11/22/13: Minocycline, Plaquenil, Rifampin
10/30/13 to 11/4/13: Minocycline, Plaquenil, Parastroy,
10/20/13 to 10/29/13:Minocycline, Parastroy
10/11/13 to10/19/13: Diflucan, Parastroy
9/21/13 to 10/6/13: Coartem
8/16/13 to 9/20/13: Oral Minocycline, Bactrim DS, Alinia, Diflucan
5/23/13 to 8/15/13: Oral Minocycline, Bactrim DS, Tindamax, Alinia
4/1/13 to 5/22/13: Oral Minocycline, Bactrim DS, Tindamax
3/8/13 to 3/30/13: IV Doxycycline, Bactrim DS, Tindamax
2/5/13 to 3/7/13: Zithromax, IV Doxycycline, Mepron x2, Bactrim DS, Tindamax
1/21/13 to 2/5/13: Zithromax, IV Doxycycline, Actigall, Mepron x2, Bactrim DS, Tindamax
10/29/12 to 1/20/13: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2, Bactrim DS, Tindamax
9/12/12 to 10/29/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2, Bactrim DS
8/25/12 to 9/11/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2
6/30/12 to 8/24/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2, Diflucan
6/22/12 to 6/29/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron x2
4/19/12 to 6/21/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron, Bactrim DS
2/27/12 to 4/19/12: Zithromax, IV Rocephin (2x/4 days/wk), Actigall, Mepron
2/21/12 to 2/26/12: Zithromax, IV Rocephin (2x/4 days/wk, 3 days off pulse), Actigall, Rifampin
1/17/12 to 2/20/12: Zithromax, IV Rocephin (1x/day), Actigall, Rifampin
12/19/11 to 1/16/12: Zithromax, IV Rocephin (1x/day), Actigall
10/11/11 to 12/9/11: Zithromax, Doxycycline, Rifampin (STOPPED all due to elevated ALT/AST)
9/18/11 to 10/11/11: Zithromax, Augmentin, Rifampin
8/24/11 to 9/17/11: Zithromax, Augmentin, Mepron
6/29/11 to 8/23/11: Zithromax, Suprax, Mepron
5/10/11 to 6/28/11: Zithromax, Omnicef, Mepron
3/31/11 to 5/9/11: Zithromax, Omnicef
3/18/11 to 3/24/11: Biaxin, Plaquenil, Diflucan
3/8/11 to 3/30/11: Biaxin, Plaquenil
11/4/10 to 3/7/11: Tetracycline
3/11/10 to 11/3/10: Biaxin, Plaquenil

Also 2008 thru 2015: Gabapentin: (1) 300mg capsule 3x/day, reduce to (1) 7/7/14, stopped 4/8/15.

Current Supplements:

Milk Thistle – (2) 240mg capsules 2x/day. Started 1/7/11 for liver support
Braggs Apple Cider Vinegar – 1 tsp 2x/day since January 2011.
Probiotics - VSL #3, Started 10/4/11 to replace GI Flora, switched to DS strength on 9/29/12. Rx stopped Sept 2016.
Mag-Tab SR – (1) tablet 2x/day. Started 3/21/11. (4) tabs/day started with Levaquin and again w/Cipro
Vit B-12 - (2) 500mg tabs 1x/day. Started 3/21/11. Ran out Dec 2015, Restarted 2/
Vit D-3 - (2 or 3) 1000mg gel caps 2x/day starting 12/9/11. Stopped May 2016 for summer.
Grapefruit Seed Extract - NutriBiotic (GSE). Re-Started 20 drops 2x/day 4/5/14.
Cats Claw – Started 12/11/12. Ramped up to 3 dropper-fulls 2x/day. Several breaks and restarted again 4/5/14. Ran-out 10/26/15. Re-started 12/xx/15
Serrapeptase - (1) 40,000 SPU Cap 2x/day. Started 2/12/14. Increased to 120,000 SPU Cap 1x/day 5/28/14.
Sovereign colloidal silver hydrosol 10ppm: Started 10/8/13, ½ tsp under tongue 2x/day. Increased to 1 tsp 2x/day 10/10/13 stoped 4/1/15. Restarted 5/15/15
NOW Candida Support – (2) capsules 2x/day. Started 7/7/15. Ran Out July 2016. Difficult to find in stock.
Alpha Lipoic Acid – (1) 300mg capsule 2x/day. Re-Started 10/20/14 to 1/23/15, Restarted 7/17/15
L-Arginine - (2) 1000 mg tablets 2x/day. Started 3/1/16 (Burner recommends 5,000 per day)
Sida acuta/Cryptolepis/Alchornea cordifolia blend: Re-start 8/11/15. ¼-1/2 tsp 2x/day. Break on 10/5/16
Japanese Knotweed – Re-Started 20 drops 2x/day on 8/11/15.
Houttuynia – 30 drops 2x/day. Started 5/30/16.
Nutramedix Takuna – Microbial Defense. 20 drops 2x/day. Started 9/29/16

Some past supplements no longer in my Rx pantry:

Ginger Root -(1) 250mg capsule 2x/day: Started 11/19/10 for nausea from Tetra. Stopped June 2012
Melatonin: (2) -5mg tablets at bedtime. Started 5/10/10 to eliminate Amitripyline. Stopped 11/20/15.
Turmeric – (2) 300mg capsules 2x/day started 12/11/12. Stopped July 2013 due to cost/benefit
Cryptolepis – started 3/11/13 five drops am and pm, ramp up 5 drop increments to 1 tsp 3x/day. 3/20/13 at 30/30 am/pm, 100 drops 4/22/13. Switch to CSA 5/6/13.
Sida Acuta – started 3/15/13 at 5 drops, ramped to 30 drops am/pm by 3/25/13. 100 drops 4/22.
Salt/C – Started ¼ tsp 2x/day in late January 2010, ramped to ½ tsp in April to 1 tsp 2x/day by late May then stopped.
Garlic Capsules – (1) 1000mg gelcap 2x/day. Started 4/9/13, stopped 9/19/12
Parastroy – Started 10/12/13, stopped 11/4/13, another round May 19, 2014 thru June 6, 2014.
Cordycepts Powder – 2 tablets 2x/day. Started 11/14/13 thru 12/19/13
Omega3 FishOil. 1000mg One gel cap 3x/day. Started 3/21/11 thru 6/19/14 then started Cod Liver Oil
Saccharomyces Boulardi probiotic - Started 4/2012 for AAD. Changed to Floristor 5/20/12. Stopped 10-15-14
Red Root – Started 9/29/14, stopped 10/30/14 when bottle was empty.
Banderol - Started 8/2/14 with 3 drops once a day, then worked up to 30 drops, Stopped when last bottle was empty.
MSM (Methylsufonylmethane) - Started 9/29/14 stopped 11/14/14. Saw no benefit (but recent article showed promise to breakdown calcified plaque associated with chronic inflammation 12/16/14 in Lymet).
Chlorella - (3 or 4) 200mg tablets mid-day. Started 11/14/12 – stopped 11/19/14, ran out and feeling much better.
Inositol Powder - ¼ tsp every day. Started 4/6/14, then doubled by 4/21/14. Ran out 3/27/15.
Astragalus – (1) 500mg tablet 2x/day. Started 6/1/15 to test Lyme presence. No reaction. Ran out 7/4/15
Symbion Probiotics: started 3/10/15, (ran out 5/26/15, no effect)
Olive Leaf Extract – (1) 250mg capsule 2x/day. Started 4/20/15, Ran out 7/20/15. OLE in NOW Candida Sup.
NAC – (2) 500mg capsule 2x/day. Started 4/20/15 (ran out 6/30/15), Re-started 7/17/15. Ran-out 11/9/15
Lumbrokinase - Started 9/29/14 (alternate with Serrapeptase)
Carlson’s Cod Liver Oil – 1 tbs 1x/day. Started 6/16/14 stopped 4/15/15, restarted 7/7/15. Stopped 10/15/15
Vit B-6 (1) 100mg tablet/day started 10/27/12. Increased dose to (2) tablets/day 12/7/12. Ran out 1/22/15.
Melatonin: (2) -5mg tablets at bedtime. Started 5/10/10 to eliminate Amitripyline. Stopped 11/20/15.

Post Edited (tickbite666) : 10/27/2016 11:22:26 AM (GMT-6)

a bit more than that... March 2010 to December 2014 is almost 5 years to get to 90% first time. I did waste the first year with a famous LLMD in research, but didn't treat co's aggressively so I switched to current LLMD. Actually she is an NP, and I hate it when my PCP makes reference to that and I bite my tongue.

I think we stayed with some protocols a bit too long, even though we would add or remove items regularly. For the longest time we thought my main problem was a mepron resistant strain of Babs, But it was Bart or a BLO holding back my progress. I should also have my old metal fillings removed when I get a few $$$ ahead.

I also don't rule out PR. My LLMD has refused to write script for Ivermectin, and I've been a bit uneasy about going to Tractor Supply for a tube of horse de-worming paste. She claims it almost killed one of her close friends.

She also was treated for Lyme and Bart, but not Babs that she feels she has, but if she starts to treat it she may just awaken the beast and take years to fight, so she just leaves it alone.

Not sure if she has other patients in my state, but relapse is pretty common in complex cases.

Post Edited (tickbite666) : 10/27/2016 12:15:55 PM (GMT-6)

My LLND kept me on lyme only treatment for a year...wasted a lot of time...before starting to hit bart.

...really the abx for bart can also treat lyme - the biaxin or mino with the Rifampin.

Girlie,

Peripheral Neuropathy in hands and feet are also my lingering sx, and I often think it may be permanent damage or just may take a long time to heal.

Staying focused was hard, but I read a lot about Lyme and Co's, and visiting here and other support sites helps. I try to not cry too much about myself, but rather help others by sharing my experience so they don't feel so alone.

My relapse was just a return of a handful of sx, like my hashes on my arm from internal bleeding of capularies, stiff and crackling neck, brain fog and anxiety, shooting pain is a few favorite joints, and flaring of the constant neuropathy, but nowhere back to where I was before starting treatment or in the early days with one long herx.


Franton,

I've never test positive to anything, except maybe my very first ELISA, and IgM 23 showing up in every WBlot. I also had a SPECT scan that detected damaged areas that we written up in the report a "consistent with Lyme".

I removed the tick in June 2006 and had a classic EM rash a week later. So Lyme was a given. My PCP gave me doxy for the 28 day standard and I felt fine until 3 years later. Then went thru another 2 years of mis-diagnosis as I screamed Lyme to anyone who would listen before finally getting to an LLMD. Test for Co's never detected anything, but the ABX challenges did get babs and his brother bart's attention.

Someday they will find out why some of us can't fully heal.