Update and request for ideas

[NancyB]

Hi,
Just wanted to update and pose some questions about what is going on with me. I talk to my LLMD-NP tomorrow and have been experiencing more inflammation and pain since changing protocols.

I

[PhilC]

Hi Nancy,

What kind of minocycline are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[NancyB]

Phil,
I’m taking a small white cap marked RX694…on the rx label it says “Minocylcine 50mg capsule” substituted for Minocin…it doesn’t say who the mfg. is–I can call the pharmacist, though.

I know there is a difference in mino products, but haven’t had time to look back and research all the threads here. What do you think?

[A Friend]

@NancyB wrote:

Hi,
Just wanted to update and pose some questions about what is going on with me. I talk to my LLMD-NP tomorrow and have been experiencing more inflammation and pain since changing protocols….…..It’s hard to tell if I

[PhilC]

Hi Nancy,
@NancyB wrote:

Phil,
I’m taking a small white cap marked RX694…on the rx label it says “Minocylcine 50mg capsule” substituted for Minocin…it doesn’t say who the mfg. is–I can call the pharmacist, though.

That’s Ranbaxy minocycline. Although some people seem to do fine on it, it doesn’t have the best reputation on here. You may want to try a different generic or even name-brand Minocin. The two generics that seem to have the best reputation on here are Teva and Watson. However, some people don’t do well on those either. I just started taking Teva minocycline very recently, and I am already looking to switch to a different generic. The Teva mino is making my ankles and wrists ache a little, and also my hands and knees to a lesser extent. I don’t think it’s a “herx” because doxycycline never did that.

Do you have any food allergies or chemical sensitivities? I have food allergies, and I suspect that they are the reason why Teva minocycline doesn’t agree with me.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Parisa]

Hi Nancy,

Although my husband ended up with a dematomyositis diagnosis, he did have joint pain with the babesia. He initially did a four month course of malarone with zith and we thought we were done. After a few months, we started to realize that maybe the babesia hadn’t been eliminated and was playing a bigger role in his disease process. He then went on to treat with malarone/flagyl for 3 months, malarone/zith (3 months) and then we brought out the big guns and did qualaquine and clindamycin. That finally did the trick.

We were lucky to get the mepron covered but other than the first month weren’t able to get insurance to pay for the malarone. It was worth it in the long run because my husband has his life back now.

[Krys]

Hi Nancy,

I’m so sorry you are going through so much. You’ve received great replies. I’m adding my 2 cents just in case something resonates with you.

..more inflammation and pain since changing protocols….I did seem to herx when upping the mino to 100mg in the evening.

It sounds like herx. Intensifying detox should help.

Curcurmin (C3) 400mg BID

Curcumin is great!….At one point, I was advised by an ND to take 3x a day 2-3 caps of Curcumin and 3x day 2-3 caps of Quercetin. So I understand it means that in case of big inflammation one can increase Curcumin (unless you are on blood thinners, have stomach ulcers). This site discusses dosage for breast cancer, but I found recommendation of increasing the dosage weekly, if there are no noted side effects, logical: http://www.inspire.com/groups/advanced-breast-cancer/discussion/curcumin-dosage-recommendations/ I was taking 2caps 3x day for months (+ Cayenne, Ginger, Bromelain, Quercetin, Boswellia, Flaxseed, Licorice, Meadowsweet +fish oil + anti-inflammatory diet) prior to starting AP and was basically pain free. Still prior to AP, I started TCM and the first dosage of Chinese herbs produced such intense herx, I thought I had a sudden onset of bone cancer. The pain was excruciating. I only had access to tea and spices. I made myself chai tea with extra turmeric, ginger, cayenne, cinnamon, cloves and the pain was immediately gone!

A Friend’s advice re.: Vit. C is excellent! It will help you with inflammation big time!

pulsing mino,….excellent LLMD

[NancyB]

Phil, AF, Parisa and Krys–

Thanks to all of you for your suggestions and thoughts. There’s a lot to think about and I’m sure I will have more questions. My phone consult with the NP went very well. I am going to stick with basically the same protocol, but will now be pulsing Clindamycin based on what seems to work for me.

He said that they don’t generally like to pulse Mino when treating Lyme b/c of the slow replication factor. After examining what has been happening the past weeks and days, I realized that when I stopped Clindy about four days ago (b/c I ran out and decided to wait until the consult before requesting a refill) I have felt much better. So, I think that the Clindy was causing the major herxing/flare and the break has done me good.

I will probably try to do one week on, and one week off, although if I flare too much I may go shorter. He’s giving me leeway to work with it. One other thing that came up in my recent labs is that my TSH has slowly been going up to a level that is a bit high, so I most likely need to raise my synthroid dosing a bit. Will see my endo next week. This could be another factor with the joint pain and depression.

I will continue with detoxing strategies and will up the Vit.C dosing and whey protein. What is a good target for Vit. C? I’m using a good brand with bio-flavinoids. Also, am trying to regularly take enzymes, but sometimes the timing of everything is daunting! I do want to work on diet as well and try to figure out what might be important triggers for inflammation for me. I have cut back on wheat, but not entirely gluten-free. Fortunately, GI issues are good with the three probiotics that Dr. H suggests.

Krys, the link about curcurmin/boswellia, etc. had some great info. I’m encouraged that there are supplements that will address the inflammation of RA as well as cancer, with my history.

I’ll speak to my pharmacist about the Ranbaxy mino and see if they have another kind available, also will check with other pharmacies in town. The thing is…I do feel like I herxed when upping my dose from 50 to 100 mg, so if I can feel a difference I’m inclined to think that it is working. I’m not really aware of how I would know that it was an inferior product unless it didn’t seem to be effective. What other factors would clue someone in to the product not being up to par? If the name brand Minocin is not available, which would you be likely to suggest as next best?

Thanks again, everyone!
Nancy

[PhilC]

Hi Nancy,
@NancyB wrote:

But, I was less symptomatic Nov-January while I was on Doxy/Doryx and Malarone (for Babesiosis), then seemed to plateau. I was happy to change abx b/c with doxy I have to fight nausea and Malarone is very expensive even with insurance. However, on Mino and Clindy (which are cheap) I

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[A Friend]

@NancyB wrote:

Phil, AF, Parisa and Krys–

Thanks to all of you for your suggestions and thoughts. There’s a lot to think about and I’m sure I will have more questions. My phone consult with the NP went very well. I am going to stick with basically the same protocol, but will now be pulsing Clindamycin based on what seems to work for me.

………….I will continue with detoxing strategies and will up the Vit.C dosing and whey protein. What is a good target for Vit. C? I’m using a good brand with bio-flavinoids…..

Thanks again, everyone!
Nancy

Nancy,
You sound so much more optimistic. So glad you are figuring out that you were herxing, and that you have a little control over some of those symptoms.

The ACAM physician seen recently requested I get Vit C 1000 mg capsules (with bioflavinoids if possible) and take 1-3 with meals; OR
Get Vit C powder (about 5,000 mg/tsp) and take 1/2 tsp (= 2,500 mg) in water, tea, or juice WITH MEALS.

The following are some saved links on this subject. I’ve found everything about Dr. Pauling and his research very interesting, and feel the Vitamin C therapy, for myself and others, is another of those missing links in our therapy. Some of the following may be repetitive, but rushing (leaving town tomorrow for several days). The research institute founded by Dr. P came up with outstanding research last fall (see last link), and it is VERY impressive.

http://www.drlam.com/opinion/linus_pauling.asp

http://lpi.oregonstate.edu/infocenter/vitamins/vitaminC/

Other writing, etc. on Dr. Linus Pauling, and others:

http://lpi.oregonstate.edu/ss01/books.html

http://www.ohsu.edu/xd/about/news_events/news/2011/07-14-ohsu-scientists-discover.cfm

Please improve more while I’m away!!!

AF

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