Need Help with Cipro and Flagyl pulses for cpn Macular Degeneration

Hello again. I really need some guidance. My mother is on Cipro twice a day and Flagyl (metronidazolei) pulses every other week.

Problem: her fatigue has greatly improved, her blurry eyes are better and she can read again a bit.  Her joint pain improved over about 4 or 5 months.

But: I know Cipro can cause tendon rupture and the other day she got a severe pain in Achilles (sp?) tendon. So I told her to only take the Flagyl since last  Thursday and wait for the pain to go away before resuming Cipro.

Then I thought  ... is it all right to take Flagyl by itself? Just for a few extra days?

I know the protocol says Doxyi - and Aziith (twice a week) with Flagyl pulses. But I could only get Cipro and Flagyl from our doctor. I have hoarded a one year supply so far.

Will the Cipro take the place of Doxy and Azith?  Is it OK to not do Cipro for another few days or maybe a week, and do straight Flagyl? 

I am in a complicated situation in not rocking the boat and antagonizing the doctor. Please adivse me. I read that Cipro gets into the cells better than Doxy and she needs to improve quickly before getting totally blind with wet Macular Degen.

Many thanks.  So much to do, so little time that I feel very scattered and running in a panic half the time.

Malory 

 

Malory, other people are better qualified than I to advise on medication, but from what I know the reason we take doxyi (100mg per day) and azi (250mg MWF) is that they are fairly safe, work better together than alone and prevent the Cpni from developing resistance.  Cipro is known to have the side effect you mention and I would be worried to continue using it with the symptom you describe without consulting the doctor.   

The problem it seems to me is to get the prescription you need, but maybe now that your mother has had the ham string pain your doctor might be more willing to prescribe doxy and azi.   These two antibioticsi stop Cpn replicating, Flagyl kills it, but Flagyl is very difficult to tolerate continuously.   I still can't take it continuously and I have been on this treatment for 18 months.  

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxy, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

 I think Michele's comment is a good bet: with tendon symptoms emerging her doc may be willing to switch to something more tolerable for the long term Tendon rupture on long term Cipro is a serious problem for some. Another macrolide he may like better is Biaxin, whose long term profile is okay and some people find it more useful than azith. Perhaps you might make another try at adding doxyi or minocycline (more anti-inflammatory effect) at this point to be safe with the resistance concerns.

No problem being on flagyli only if she can tolerate it continuously. Watch for depression and increased die-off symptoms.

Dr. Stratton's comments that in a disease with more rapid loss you need to be more aggressive (within manageable limits) does argue for using more potent agents or more vigorous approach. But rather than using just one potentially problematic agent (Cipro) as the version of more aggressive approach, I'd look at what Daisy is doing with her husband as a better model: adding in the whole range of CAPi anti-chlamydials which go at the bug from many diffferent angles all at once: doxy, azith, continuous flagyl, amoxicillan and NACi, rifampin. It's like comparing an aggressive spearhead of powerful tanks  with an aggressive frontal assault of lessor tanks, artillery, rockets, troops, armor, etc. I hope the military metaphor isn't offensive, but this is indeed war.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks for your insight, Michele.  Now I know the amount of doxyi and axith to take.

But the problem is my mother won't go to the doctor.  She went once only. I went and asked for the perscription for her for Cipro and flagyli since she had had it from a previous so this doctor went along with it, grudgingly.

Now she won't go back and ask for doxy. If the doctor is pushed, he won't prescribe anything! I also asked for it for myself, hence in 6 months I have accumulated a one year's supply.

It is complicated here. It's no use telling me to change the perscription to doxy and azi if I can't get mother to doctor or get him to give it.  I have to work with what I have.

So...does Cipro do the same thing as doxy and azi?  That is my big question.

so far, I get excellent advice here but not the answer to my question. Is Cipro ok for stopping the replication of Cpni?  I am going absolutely nuts trying to find out. 

I am at the end of my rope.

Glad you are feeling better Michele. And glad to find this site but still need my question answered if I can't find a way to get doctor to give Doxy.

Thanks, Jim K.  You have added another few pieces to my puzzle.

So flagyli is ok continuously. Good, that's one answer.

In a roundabout way, you mention Cipro - but you didn't tell me point blank that it does the same as doxyi and azi:  I will therefore assume Cipro can stop replication, same as dozy and azi.

I have a very analytical, one-track mind: I need to be told exactly since I don't have much background in all this, not withstanding a B.Sc. degree in Biology, many years ago. 

Now as for minocycline, my mother used it in the past and used it again for three months this spring; it stopped the bleeding in her wet macular degen. eye. Ran out of perscription  - mother won't go back for more - due to thyroid destruction by it.

Also, found out that minocycline is quite deadly to the thyroid gland, leaving a pigment in the tyroid and rendering it useless.  Since poor mom has low thyroid function, now being addressed with 100mg Iodine and KI the use of minocyline is a bad idea.

I get my info by searching the web when I get a chance so my knowledge is spotty.

And I love the military metaphor - this is indeed war and I am going to see my mom cured and hope I don't cause her more harm in the process.

I will have to use my wiles to go to doctor to try to get doxy but it will have to wait a bit.  Interesting thing is that I have a couple of swollen finger joints and may really need the CAPi for myself. But that will wait until I hoard a two to three year supply.

Thanks, & sorry to be so long winded. Am in a hurry, as usual.

 I dont know anything about minoi and thyroid. however, cpni can invade the thyroid and cause hypothyroid (hashimoto's--where the body starts attacking the thyroid)..

Mphs, TN. hypothyroid, weak adrenals, 37 yo with hormones of 80 yo, fatigue. 6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07- NACi; 7/2/07- doxyi 100, 2xday; 7/19/07-9/7/07- Biaxin. 9/8/07-azith 250 mg m/w/f.

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Malory, Once on a proper antibiotic protocol, the thyroid condition may improve, due to cpni infection lodging in the thyroid. Obviously, once the infection is killed, the organ should work better on its own. In my case, the antibioticsi coaxed my nonfunctional gallbladder into working just fine again! WHile you wait for a pharmacist or medical pro to answer your cipro question, have you considered ordering meds from the internet? While it's not the ideal situation, it could be the interim solution to getting the 'right' meds for use on the protocol. I may have missed this, but is your mom (Or you, for that matter) taking NACi? While it is great for addressing the first life-phase of cpn, it is also liver-protective and should help with the die-off of the bacteria.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Sharon,  that is so interesting about cpni invading thyroid!  I am on a yahoo iodine list that always talks about Hashimoto's thyroiditis.  I just didn't connect that.  I'll have to see if iodine is used in Hashi's. 

 

I think at around 80 years old, it isn't Hashi's but menopausal effects (she's on bioidentical hormone replacement). She doesn't have fluctuations of hyper and hypo symptoms, just persistent cold and fatigue.

Really hope the CAPi will address this thyroid issue, then.  I wonder how else you are addressing the low adrenal - thyroid issue besides CAP?

All the best for your full recovery and thanks for taking the time to answer me.

Malory

 

Hi MacKintosh!  That's great about your gallbladder working again! Amazing actually.

I sure hope my mother's thyroid starts working again. Depression goes along with low thyroid so I get the brunt of her bad temper and self-pity. Hence my stressed-out state.

I looked up Doxyi and azith on  Mastersmarketing.com yesterday to see if they deliver to Canada. Seems they do and Doxy is pretty cheap but azith costs a huge amount for 6 tablets in comparison.  (I forget how much now.) So when I stockpile some more Cipro, I will go to doctor on my behalf and ask for both. But I may just order the Doxy before to see if it actually gets past customs & revenue.

The NACi my mom just won't take any more supplementsi. Stubborn, to put it mildly.  I have Reduced Glutathione, a thiol antioxidant">i (don't know what that is really but it helps the liver too, I think) which I am inserting in her supplements.  But I will try to get the NAC soon.  

I will try more on-line pharmacies but it may be a problem importing to Canada.

Thanks for all your help and if you know of any other pharmacies, let me know!

Take care,

malory

 

Malory, The azith is the expensive one.  Flagyl is dirt cheap, though, under the name metronidazolei.

As for NACi being a supplement, no, actually it takes the place of an antibiotic, so just tell your mom it's necessary, in order to hit the first stage of this bacteria. It's an antibiotic (amoxycillin?? not sure on that) or it's NAC, but it's got to be one of them in order to do a thorough job of this, and at least the NAC doesn't require a prescription!! 

She needs to understand you are trying to treat the cause of the problem rather than the symptoms, so she is not allowed to be stubborn (tongue in cheek, because I know firsthand it's easier said than done).

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hashimotos is when the body starts attacking the thyroid, and then the thyroid become sluggish, and slowly quits working.  This is different process than hypothyroidism that maybe caused from aging.  I often wonder if the CPNi invades the thyroid, and then the body starts attacking the thyroid in attempt to kill the CPN. But in turn, it is slowly attacking and killing your thyroid. 

 Symptoms is not a good way to judge if one is hypo or hyper because the CPN can mimmick alot of the hypo symptoms. Also, low hormones can cause a degree of fatigue, depression, and cold. It is in my opinion that she needs a TSH, Free T3 and Free T4 to determine if she needs thyroid replacement (synthroid) .  She will need thyroid peroxidase antibodies (TPO) drawn to see if she has hashimotos.  

I dont address my low adrenals anymore. I was taking cortef for low cortisol. but i noticed that it was not helping with the fatique. my doc says cpn is very inflammatory and this causes stress on the adrenals. so i decided to wait and see if the CAPi will help with the adrenal issues. I am on hormone replacement though--estriol and progesterone.   

I address my hypothyroid from hashimotos with synthroid 125 mg per day.  I also do wonder if the damage that has been done to my thyroid is reversible. Only time will tell. I know since starting the CAP. I went hypo again and had to increase my synthroid. prior to cap i was on 75 mcg of synthroid a day and stable. but now up to 125 mcg per day.  

I hope this helps some.  This has been my experience and each person is different.  Your mom sounds like she has a 'challenging personality' to say the least.  Good Luck :)

 

 

 

Mphs, TN. hypothyroid, weak adrenals, 37 yo with hormones of 80 yo, fatigue. 6/26/07- CPN Titer 1:256 (normal 1:16); 6/27/07- NACi; 7/2/07- doxyi 100, 2xday; 7/19/07-9/7/07- Biaxin. 9/8/07-azith 250 mg m/w/f.

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Hi Sharon,

I just found your reply. There are so many pieces to this puzzle and it seems we have to attack it from all angles. It makes sense that Cpni could attack the thyroid since all the blood in a body is filtered(?) through it every 15 minutes or so.

Iodine is an old remedy for hypothyroid. I was on an iodine list at Yahoo and learned quite a bit, plus library books. Most people are deficient in iodine. We all take 100mg Iodine/potassium iodide a day, including the dog.  Supposedly prevents all kinds of cancers since we evolved with iodine.

Oh dear, I am so not technical when I try and describe stuff. But you can see drbrownstein.com etc for what I mean and I read Dr.David Derry's booklet in our library about it.  Best for iodine is breastcancerchoices.com I think.

At the risk of being off topic, I think on the iodine group they say Synthroid is not good, but to use Armour (pig thyroid - ugh!!!  which I would not use to save my life if it hurts an animal).

Another off-topic perhaps is that estriol is metabolized down a cancer pathway in the body although it helps with symptoms, so it is not good since it leads to breast/endometrial cancer. Dr.Elizabeth Vliet's books on this are good. You are so young to have to deal with hormones.  We take compounded Estradiol gel/cream instead and Prometrium.

I have so much faith in CAPi since it has stopped the bleeding blood vessels in my mother's eye.  And I think it has helped her fatigue. But now she has a very bad sniffly cold.

All the best with your treatment. Patience is needed and I wish my mother had more of it.  I will try once again with the NACi.

Malory

 Malory- Just to confirm your slightly off-topic observation: I've also recently had good luck with iodine. Dr. Powell is using it with his CFSi patients as he has found that, in addition to the typical thyroid imbalances in this group, idodine is also dumped heavily from the body with endotoxini reactions. I couldn't tolerate the recomended form of Iodoral, but found the liquid drops of Magnascent Iodine to be easily tolerated. Gives me a lot more energy. Quite surprised me. There's a book by David Brownstein M.D. which gives a very good description of the importance of iodine. One thing is that it seems to be involved directly in the body's use of T3, and it is clear to me that I'm getting a bigger kick from my T3 supplement so may have to adjust it down. Using less meds. That would be nice.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFS & FMSi- Currently: 200 Doxycycline, 500mg MWF Azithromycin, Tinii pulses.

A motto, not an aspiration: "Anything worth doing is worth overdoing."

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Hi JimK,

That is very interesting. And just think, if the body has an iodine deficiency in the first place, how much more damaging the endotoxinsi would be.

Dr.Brownstein has a new Iodine book out I read on the iodine list (don't belong to it anymore since too much to read.)  They spoke of Magnascent iodine but I thought there's not enough iodine in it.  The doctors themselves take about 100 mg Iodine daily (Brownstein, Flechas etc.)

And I got up the nerve and asked our doctor for Doxyi and Azith and got it! Today my mother started Doxy.  It has to be taken without food but she had it with breakfast. Oh well, next time!

Glad your thyroid is working better. I am so in favour of iodine and hope it all adds to the CAPi.

Regards,

Malory

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