Medication change

[kerry23]

Wow, off of Levaquin for Bartonella about 2 months, now on Tindanax. Anyone been on that, can they tell me what to expect.
My first and second night were hell. Herxed immediately, joints ached and locked up, I couldn’t move. Will this pass? Nausea too. Doc is also bringing me DOWN from Minocin, wants to pulse, why bother now after 3 months. All because I said my joints have been stiff and hurting since the start of all meds. So now I take Minocin M W F and Tindanax twice a day….
Anyone else?

[maz.aust]

Hi Kerrie,

Just wanted to let you know herxing does pass .. but no-one can give you a time frame, it is entirely up to your own body, as for the change in meds sometimes it’s normal to tweak the meds to get a better result so not to worry. I am sure someone will jump in here & explain why we pulse dose so you understand.

Good luck,
Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

@kerry23 wrote:

Wow, off of Levaquin for Bartonella about 2 months, now on Tindanax. Anyone been on that, can they tell me what to expect.
My first and second night were hell. Herxed immediately, joints ached and locked up, I couldn’t move. Will this pass? Nausea too. Doc is also bringing me DOWN from Minocin, wants to pulse, why bother now after 3 months. All because I said my joints have been stiff and hurting since the start of all meds. So now I take Minocin M W F and Tindanax twice a day….
Anyone else?

Hi Kerry,

This might seem like a silly question, but are you seeing a Lyme Literate MD? It sounds like you are, but I’m trying to figure out your doc’s rationale for bringing your mino dose down, as most LLMDs prefer daily dosing in higher doses than are used for AP. Put it this way, it’s the way an AP doc does it, but not usually an LLMD who will use herxing as a gauge of success. 😕 Each doc works differently, though, and some LLMDs are now taking a more conservative approach in weighing patient response and herxing with quality of life.

I haven’t yet been on Tindamax (aka tinidazole), but it’s an anti-parasitic and is used for both the treatment of babesiosis and the cystic form of Lyme. I understand that the “azoles” can pack quite a punch (well, it can be hitting a couple of things at once), so it’s likely doing the job in your case going by your herx symptoms. Herxing does pass, but how quickly will vary between people and how the LLMD is working…some will use continuous dosing and others will use long pulse dosing (e.g. weeks on/off with the intention of scaring out the bugs and hitting them over and over).

What are you managing to do in the way of detoxing? Do you have access to a FIR sauna?

[kerry23]

I am not doing anything for herx, just getting through. He started pulsing me on Minocycline due to my complaining of joint pain 24/7 and when I sleep, it wakes me up. The stiffness and pain so he lowered the dose. I thought it was insane myself. I do not agree with this move. Leave it alone, why go backwards? He just said, maybe it is too much for you. He is LLMD and a good one, well know: Dr. S. B. in Rhinebeck, NY
I am going for second opinion next month to a new one found. Dr. J. in Middletown NY which is so much closer to me. She is an allergist and is listed with the best but I have to find the site for you: truthaboutlymedisease.com or lymediseaseblog.com
I don’t know which one…….
If he gave me enough meds, I would have stayed on them: daily
Kerry

[nspiker]

Kerry,

I’ve been on tindamax for a long time now (14 months), but never herxed much that I can remember. Most likely because my symptoms seem to be babesia-related, more than lyme.

My doctor never believes in taking any medication away or lowering dosages, unless the herx is too great. Your doctor may have thought that it was better to back off the medication, and take it slower, given the pain that you described.

I agree with Maz about detoxing. It really makes a big difference. I don’t think you need to tough-it-out, and that’s probably why your doctor reduced your dose of minocin. Here are some detoxing ideas:

Epsom salts, hydrogen peroxide bath
Lemon water or lemon, olive oil drink (promotes alkaline balance)
Nutramedix Burbur and Parsley
Pekan detox remedy
Apple pectin for binding *
Oxy-powder for colon cleansing and oxygenation*
Dry brushing
Detox foot baths or foot pads
Lymph massage and drainage (be careful not to do too much too fast)
Cholorphyll for oxygenation (promotes alkaline balance)

Apple pectin and Oxy-Powder I can’t live without, and take every day. Apple pectin 3 capsules twice a day (away from antibiotics) to bind the toxins that are being killed off. Oxy-powder, 2 capsules nightly, to remove toxins from system daily.

I found something on Tiesel Root, to aid in the pain management.

Teasel Root Tincture This one

[kerry23]

I just wanted to thank you both for responding. You and a couple of others are always the ones to the aid of others in need of answers, thank you.
I will look into the supplements and still want to convince my doc to continue with minocin full force. As for the other drug, I have Bartonella not Babesia, I see many patients receive Tindanax for Babs, is it used for Bart too. I just wondered why he did not prescribe me Rifamkin or Cipro or Biaxin, anybody know? Anyway, as far as the herx, I don’t have it bad, just at night my joints ache and stiffen so bad on the tindanax, much more so than Levaquin. Then again, maybe it’s the bacteria hiding away in the joints. What is a lyme cyst and do we all have them and how do we treat them? Plaquenil, what is that drug used for? Will I have to go on that as well?

[Maz]

@kerry23 wrote:

I will look into the supplements and still want to convince my doc to continue with minocin full force. As for the other drug, I have Bartonella not Babesia, I see many patients receive Tindanax for Babs, is it used for Bart too. I just wondered why he did not prescribe me Rifamkin or Cipro or Biaxin, anybody know? Anyway, as far as the herx, I don’t have it bad, just at night my joints ache and stiffen so bad on the tindanax, much more so than Levaquin. Then again, maybe it’s the bacteria hiding away in the joints. What is a lyme cyst and do we all have them and how do we treat them? Plaquenil, what is that drug used for? Will I have to go on that as well?

Hi Kerry,

Well, Dr. B is a pretty well-respected LLMD, so am guessing he must know what he’s doing in your case. 😉 I was surprised by the lower dose recomendation, but not blown away. My LLMD agreed to let me try low dose combination AP a couple years ago and I did well on it, but it’s clear I had more work to do when I had to switch out of minocycline due to a drug reaction. This is why I had to revert to higher doses in my case, as my doc felt lower doses were just serving to suppress my infections. T’was ever thus, each LLMD will have their own MO, so while it’s confusing at times, it’s also true that until a standard of care is devised that every LLMD agrees upon, much of this is going to be a bit of a crap shoot. We have Dr. Burrascano’s Lyme treatment guidelines and the ILADs treatment guidelines, but these will also be adapted to individual cases by prescribing LLMDs, just as any medication would be.

The thing is, Dr. B may be doing a therapeutic probe for you with the Tindamax, which is also a very common practice with LLMDs. The tests for Lyme and its coinfections are really poor, so often they will try different meds to assess how a patient responds. Clearly, providing you are confident that you are not having a drug reaction, Tindamax is killing something. I was reading that are something like 24 different strains of babesiosis (bartonella has something like 26 known strains), some more virulent than others and not all can be tested for…up here in the NE, babesisa is a very common Lyme coinfection, so it shouldn’t be ruled out, based upon testing only and should be a clinical diagnosis based upon presentation of signs/symptoms. In fact, some LLMDs state that in terms of risk/benefit, it’s far safer to treat for ‘suspected’ coinfections than not to treat. So, Dr. B. may be suspecting babesia for you, but didn’t think to mention this. ❓

Tindamax is also a Lyme cyst-buster, so it could also be hitting this form of borreliosis for you…it may also be hitting other unknowns, such as chlamydia pneumoniae. There are a number of different pleomorphic (shape-shifting) forms of Lyme, such as the well-known spirochetal form, which is the cork-screw shaped, cell-walled organism, but there are also forms it shape-shifts into, such as spherical cell wall-less L-forms, granulocytic forms, dormant cystic forms, blebs (fragments), etc….and all these forms may co-exist in protective bio-films with other organisms within the body, hiding out behind a slimey matrix in symbiotic communities. For e.g., it is known that strep, the actual bug, is not in any way resistant to penicillins, though it can hide out in the mouth and throat in protective bio-films, which make it difficult for antibiotics to control. This shape-shifting and hiding in bio-films are ways that Lyme manages to avoid being hit by certain abx, which is why LLMDs will use a combination approach to hit both cell-walled (with bacteriocidals, like penicillins) and cell-wall-less forms (with bacteriostatics, like macrolide abx, such as azithromycin, clindamycin or biaxin), as well as using cyst-busting meds (like Tindamax, Flagyl, Mepron or malarone). The following video clip shows in real time how spirochetes morph into resistant cyst-like structures:

http://www.youtube.com/watch?v=lVmCa70bAxE

The cystic form is really tricky, because it is known to have reduced outer surface proteins, which means it can persist for very long periods when under stress by avoiding immune detection altogether…it’s a vertitable cloaking mechanism. This recent German study talks about how Lyme evades immune detection by reverting to these cystic forms:

http://www.ncbi.nlm.nih.gov/pubmed/20967786

Plaquenil is used by LLMDs to treat babesiosis, a malaria-like protozoan piroplasm. Tindamax is also used to treat babesiosis, so you are getting some coverage by using this med, though it’s more common for a combination approach to be taken in babs treatment. This is why I’m wondering if Dr. B is trialing you with Tindamax, first, to gauge your response by way of a therapeutic probe? I don’t know…just wondering really.

Nancy was very kind, as she always is (thanks, Nancy!) for posting ways to help with detoxing…very important when going through herxing to flush out those toxins. One additional thing you can do right away is to keep drinking lots of pure, clean water.

Kerry, have you had a chance to read Dr. Burrascano’s and the ILADs treatment guidelines? I think this might help to explain what antibiotics are commonly used and for what in a bit more depth:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Kerry, I hope something above helps in your researches! Hope you feel better soon, too!

[Author]

Posts