posted
I am in need of advice and support. I got Lyme 12 years ago. I was treated by a LLMD with oral antibiotics for 13 months and remained in remission for 9 wonderful years until I received a flu vaccine in 2009. I then started to experience back/sacral/hip stiffness and pain, fatigue, problems with my hip joint. I didn't think it was Lyme again.
Fast forward to this past summer when I added numbness/tingling, debilitating fatigue, getting lost, brain fog, malaise, achy muscles, femur bone pain, twitching fingers, insomnia, depression, unexplained rashes and more….
I was tested for Lyme through Stony Brook labs in Sept: IGG band 30, 41 indeterminate. Lyme C6 = 0.63. Blood smear showed parasites. LLMD thought Babesia at first then changed to Bartonella. CD57 = 30.
I have felt worse in the last 2 weeks than I have in 3 years. How do you know if this is a herx or a worsening of symptoms? Wouldn't it be odd that I would get such a bad random herx 3 full months into treatment? It's been a full month on my new med regimen. My LLMD says he thinks I do have Lyme although my tests don't show any positives.
Did anyone out there ever question if they had Lyme if their lab were negative? My other labs are normal so far. My anxiety is getting the best of me as I find myself worrying about other autoimmune diseases and even cancer. Any thoughts/advice would be appreciated.
This is such a lonely disease….
Posts: 12 | From Sarasota, FL | Registered: Jun 2012
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes, you are right! It is a very lonely infection to have!
I was on varying combos of abx and felt nothing. Neither better, nor herx-worse until my doc found the right combo for me.
It too included rifampin and doxy and a ceph.
Then bham-o! Felt like I was hit by a snow shovel and left in a ditch.
If it is a worsening of your symptoms, I bet your LL would agree finally an abx combo that is hitting the bug(s) you have!
What are you doing for detox?
When I hit that bham-o, my doc gave me IV glutathione, NT-detox by Byron White, and chlorella and activated charcoal (at least 2 hours away from abx).
The activated charcoal and chlorella bind to the toxins being released into the intestines by the liver, and hang onto those toxins until one poops them out.
Without the binders, the toxins can be reabsorbed, or worse, stored in our fat cells. (to protect our organs-it stores toxins in fatty tissue. Unfortunately, the brain is mostly fat).
It is important not to pulse rifampin, or stop the doseage entirely. If you feel the need to taper it, please phone your LL first to discuss this. Otherwise, resistance.
But binders and detox hopefully will help if what you are experiencing is a herx.
Do you have a support group in your area? Sometimes support group have Herx Buddy system, that pairs you with someone to help and support while going through herx he11.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Serendipity20 - I don't have burning. Although I guess I have some symptoms of Bart, it doesn't seem that I have most of the typical ones. I guess that's why I question it. Interesting about your hip too.
GretaM - I love your snow shovel analogy! Yes, I feel like I just got whacked. I have an appt on Friday with my LLMD and we will discuss if this is a big herx vs worsening. I suppose I've gotten a little slack on detoxing since I felt like death. I usually take Epsom salt baths, drink lots of water, lemon water. My intestines are moving so that's good. I'll have to ask about charcoal. A Lyme group may be what I need since I don't seem to be on my friends minds lately. :/
Posts: 12 | From Sarasota, FL | Registered: Jun 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Glad you have an appt. this week for some support/ advice.
It's really tough at times, that's for sure. One thing I thought as I read this: what about yeast? Are you off sugar, taking nystain or anything? Good probiotics? Liver support?
It's quite a powerful combo you are on (so was the Tindamax- was that daily?)
Detox is time consuming and expensive, but have to get the crud out. Hang in there---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I do take a refrigerated acidopholis once a day and Florastor once a day. I also drink Kefir. No anti yeast drugs have been given. Tindamax was taken twice daily for 2 full months.
I am off sugar (but use a little raw honey and stevia), no gluten. No dairy. But I did cheat a few times.
I was taking Milk thistle but read that you shouldn't take it while on Rifampin?
Can yeast cause numbness/tingling?
Posts: 12 | From Sarasota, FL | Registered: Jun 2012
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
McMoo...
Your reaction was post-flu vaccination, and vaccinations, especially in those who have already had a immune/neurological "insult", like Lyme, can cause chronic reactions, including "toxic encephalopathy", with the symptoms you describe.
I would explore the possibility of this with your LLMD, because if this is a toxic reaction gone chronic, rather than a Lyme "relapse", taking in more toxic substances (antibiotics) could contribute to the problem...
Just a thought...
Posts: 1880 | From Earth | Registered: Jul 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Can yeast cause numbness/tingling?"
Not sure, but tinidazole (tindamax) can cause numbness and tingling. It could be the beginnings of peripheral neuropathy (nerve damage).
You may need to rule out if any of this is an adverse drug reaction.
I got permanent, painful peripheral neuropathy from Levaquin (a bartonella med). Doc thought it was a herx, but was dead wrong.
Some of these antibiotics combos just don't agree with everyone and need to switched.
Good luck (and avoid levaquin, there was just an abc news report on the problems. Flaqyl and tinidozole also cause peripheral neuropathy).
Experts: Top antibiotic carries hidden side effects not listed on the label
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Judie...
I had severe, burning neuropathy (head to toe, 24/7) for over 7 years straight...originally from Lyme, but worsened by Levaquin and others (also a torn Achilles tendon). No pain med could put a dent in it.
I never thought the neuropathy could be reversed either...but it was, via mHBOT (mild hyperbaric)...it healed the tendon also...
Just know that there is hope/treatment for that type of pain!
Posts: 1880 | From Earth | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, very lonely disease......
Greta, I stopped chlorella after my tx ended couple weeks ago. I am waiting for retesting and whatever else when llmd returns from vacation.
should i keep up with my chlorella? even when not in tx? and how much and how often? thanks
Mcmoo, I find myself questioning all the time the validity of my dx.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
When you take tindamax you need to take lots of vit b. It is important to prevent nerve damage. This is from Dr. H
Posts: 160 | From somewhere | Registered: May 2010
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posted
My LLMD wasn't convinced that my numbness/tingling was from Tindamax. I asked him to stop it for now and that's why he switched me to Ceftin. It's hard to say for sure it was the Tindamax since I had similar numbness/tingling prior to starting abx.
PHOIPH: That's interesting about the hbot treatment. My LLMD has one and has recommended it to me….
KH111: I've read about vit b and the protection of nerves. Does anyone else get concerned about taking too many supplements?
Posts: 12 | From Sarasota, FL | Registered: Jun 2012
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
I am impressed that you LLMD recommended it to you! You can PM me for more information if you like. I am 100% well now, med free thanks to mHBOT, and had severe Neurological Lyme and coinfections, and was considered a "treatment failure" by LLMD's.
It is also good for toxic encephalopathy, which is what you may be experiencing post-flu vaccination. In my opinion/experience, it is very important to use mild pressures for neurological conditions, and crucial to do daily treatments over an extended period of time.
I recommend the book "The Oxygen Revolution", by Dr. Paul Harch, or visit his website: HBOT.com Take a look at some of the before and after SPECT scans...
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
My LLMD wasn't convinced that my numbness/tingling was from Tindamax. I asked him to stop it for now and that's why he switched me to Ceftin. It's hard to say for sure it was the Tindamax since I had similar numbness/tingling prior to starting abx.
PHOIPH: That's interesting about the hbot treatment. My LLMD has one and has recommended it to me….
KH111: I've read about vit b and the protection of nerves. Does anyone else get concerned about taking too many supplements?
Posts: 12 | From Sarasota, FL | Registered: Jun 2012
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