27 Apr 2018
Author
Darkdaze
Title

Rare Doxy side effect?

Body

Let me preface by saying that Me and Sleeping do not get along well.  However, I still managed to get some sleep.  After being on Doxy for a short time I noticed that I could not get or stay asleep.  It seems like I wake up every 15 min.  This lasts all night.  Instead of some sleep, all I do is toss and turn.  I stopped taking the doxy for about a week and my sleep has gotten a little better.  I know most of you have sleep problems, but has anyone else noticed that they are worse while on the Doxy?

Comments

Hi Darkdaze,

I looked for your signature line and wonder if you could update it for us with the dates you started our specific CAP abx etc.  It would give us a better picture of where you are intreatment from which to respond.  

Thanks Louise  

 

CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I don't know if sleep interference has ever been reported as a specifically doxy side effect, but it is often reported as a porphyria symptom. If you are just starting out the protocol and have other porphyria symptoms, this may be due to that. Porphyrins bind with GABA receptors thus blocking GABA, the same receptors which need GABA in order for you to sleep. Are you taking charcoal or Questran/Welchol?

It's hard absorbing it all, but keep going over and over the Handbook to get a sense of the kinds of reactions you might get and what they might be from. 

 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Red

Hang in there Darkdaze. It's kind of difficult to figure things out, particularly at first, but you'll get the hang of things.

I'd definitely second Jim's mention of sleep interference being a side-effect apparently of increased porphyrins. Tossing and turning all night long is one of the things I find I get if I let the porphyria get out of hand. In addition to the agents Jim mentions, remember to drink plenty of water, also I can't stress enough how much starchy carbs can be your best friends in helping to prevent porphyria. I eat lots of pasta at dinner and try to stay away from too much red meat. My breakfast is high carb (a bagel and an egg), and lunch is all about the bread. I generally throw in a sugar cookie during the day to help add to my carb levels...

You wouldn't think porphyria would be a problem so early in treatment, but my brother, who is only on 4000iu of Vit D3 (no abx at the moment) all of a sudden started having major symptoms of porphyria (very cranky, major sleep problems, and MAJOR, MAJOR depression). We loaded him up with Soda and skittles (nothing else was available in the hospital he was at) and his symptoms have stopped dead in their tracks. The other thing you can really try is Glucose. It's odd how glucose and/or sugars and carbs can make such a difference, but they do. Don't underestimate them...

Best of luck to you.  Keep us posted on your progress... 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Darkdaze, Don't worry; it's not you. Signature lines don't appear on original posts (a quirk of the program used by the site).

As for the sleep problems, you've probably read a few times here 'you'll revisit all your old symptoms' while in this protocol. If sleep is a problem, the protocol will aggravate it. BUT the reason it agravates it is because cpn bacteria is being killed in whatever sector of your system contols your sleep. As that is fixed, your sleep should improve, too.

You're not alone; if you search 'sleep hygeine' here, you'll find lots of commmentary about sleep problems. Take your melatonin religiously and it will change over time. One of my first complaints before diagnosis was sleep deprivation. Doctor was not convinced and wouldn't even give me Ambien. Now, I drop off to sleep in a few minutes (a miracle; it used to take 45min, minimum, and never could get to sleep before 4a.m.).

Now, you can't stop and start abx every time something new scares you, though, or you'll never make it through this protocol.Image removed. There are just going to be some 'iffy' moments and you have to accept that.  It's like the old adage ' accept the things you cannot change' from the Serenity Prayer.  We'll be here to talk you through them.

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

MacKintosh, I looked back through all previous posts to locate the most recent signature and it did not mention doxy. I hesitated to make a response based on what I could see.  Sorry if you think that my request was critical, It was meant to get information from which to answer. 

Louise

CFS/ME.  CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Darkdaze, in the beginning the symptoms that plagued you most before the treatment are the ones which will appear to get worse for a while.   As Mac says it is what will happen when your sleep centre is being cleared of Cpn.   Her advice about not stopping antibiotics is sound.   If you are very sick and at risk of being admitted to hospital then maybe stopping an antibiotic might be advisable, but in other circumstances this practice is likely to render the CAP ineffective if repeated too often.   Cutting down is an alternative, but cutting down also has some dangers, eg the dose is not effective.   You might try taking the two doxy doses together in the morning...  Also pay attention to anti prophyric measures etc

Louise, I don't think that Mac was being critical here, and we understand that you may have tracked Darkdaze's sig in other blogs, but Darkdaze may not understand this.   It takes a while to get a feel for the way this site works and I think that was what Mac was getting at. 

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Michele, that may be so, however my responses are tailored to the individual regarding their length of time on a medication, as well as their primary presentation of CPn.  If I cannot get some glimmer of information I choose not to respond.  I think that it would be best left to the individual to deal directly with me for questions about what I am asking and that Mac dismissing my response is a bit .....   We all have different stengths and backgrounds that we bring to this forum.  Presentations of symptoms differ.  One thing that I have observed over the past 6 months of reading this site and past 4 months of interacting on this site is that folks with different sets of patterns of sypmtoms in their bodies need different feedback.  Darkdaze did figure how to do a signature, it was just not up to speed with his/her progress on this particular form of CAP.  I also did not get it whether this person is an MS presentation or a CFSish presentation.  I answer more often for CFS questions as I feel that I have personal perspective that could be of value to the individual.   Frankly, I felt dismissed by Mac, I guess that was obvious.  It was obvious to me that Darkdaze was up to speed on getting a signature written as there are signatures on past posts, and these signatures do not reflect the addition of doxy. 

My response to Darkdaze would have been an answer similar to Red's and Jimk's. Perhaps specific in some other ways it is hard for me to say as we all respond in the moment.  

Happy Holidays to all.  Louise 

CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Sorry for all the confusion.  My computer has been down for about a month.  I finally got a motherboard replacement and its up and running.  With so much to catch up on, my profile and blog has found its way to the bottom of the list.  However, I just wanted to pop on and see if anyone noticed a side effect from doxy specifically, not necessarily cpn die off, just as a side effect of the drug.  My wife is a nurse and she has done some research.   Although its not listed as one of its side effects, she has found many others on various web sites complain of a sleeplessness with this med and I'm sure most of them do NOT have CPN like we do.

Is there an alternate to doxy that will hit the CPN at the same stage?  I'm also currently not taking the Azritho because I can't get my prescription insurance to cover it.  I've been fighting with them for months now.  So my treatment is definately on haiatus.

Some one also mentioned the porphyria (sp?) and that my normal sleep problems could be from that.  I saw something about charcoal?  anyone able to elaborate on that a bit?  Thanks.  

Oh and for the record, I'm not officially MS.  Although I do have a lot of neuro problems.  I've see countless specialists and had several MRIs and they have ruled out MS.  So I guess this puts me into the Fibro/CFS with neuro muscular abnormalities and cognative impairment category. 

 

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

A large percentage of our species have been exposed to CPn whether they are exhibiting the generally falling apart syndrome or not.  I have mentioned on this site before, it kind of makes me wonder when testing the abx we use, back in the day, if the abx was just getting to the Cpn & thereby exhibiting these symptoms we know are actually die off.

Welcome & best wishes on your road to recovery.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Darkdaze, Doxy is one of the drugs of choice, it passes the blood brain barrier well and in moderate  dosages of the Wheldon CAP has a good track record for safety.  I would still side with the porphoria aspect and suggest that you learn more about that  condition.  It is something that I experienced particularly in the first 4 months of my treatment on the Wheldon CAP.   Many of us with sleep disturbances use either herbal or over the counter formulations such as melatonin and other herbals.  I personally, currently take a long acting benzodiazapine, Klonopin 0.5 mg at HS to deal with my mid sleep cycle waking.  It works well for me and I find not hung over feeling from it.  Melatonin works for some that cannot get to sleep and perhaps for those folks it prevents reawakening.  To try and pin your sx on Doxy seems unlikely in my humble opinion.  Early treatment is unpleasant for some of us, as the bacterial load begins to be winnowed away many of these  discomforts begin to clear. 

Use the search function to find discussions on Charcoal, Cholystyramine and Welchol which are agents that assist to extract the fat soluable porphorins from the body and you might condsider the possibility of asking for sleep assistance from your provider, for a short period of time.  This has worked well for me.  I am now in my 7th month of tx.  I have two more refills then will give spontaneous sleep a good try again or go to botanical herbal options.

Glad you are back on track with your computer on line again.

Louise 

CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

 Some possibilities:

  1. As Cpn is ubiquitous, and mostly undetected, so it wouldn't surprise me that a few people reporting on various treatment boards  "who don't have Cpn" might indeed have it and be reacting with porphyria without realizing it. As you noted, it isn't one of the listed side effects, so it is either rare or due to other causes than the doxy itself. We have had a number of folks who had significant porphyria from antibiotics given to them for other reasons, then on searching found this site and the link between Cpn and secondary porphyria.
  2. Another possibility: that the generic doxy you got isn't as pure as some others might be. I had a friend who was having idiosyncratic reactions to doxy and his doc was concerned about the generic being the culprit. Perhaps she had had similar problems before. Anyway, switched him to minocycline on which he did fine.
  3. Your best test of the porphyria vs doxy hypothesis might be to work up to a full dose of a macrolide like Azith or Biaxin as an alternative, and see if the sleep problem returns. If so, it is more likely porphyria, since you would be using a different class of agent and it would be unlikely to be the agent itself. If not, then you know you are sensitive in some way to the doxy. You might not have the same sensitivity to minocycline, so worth trying. 

CAP for Cpn 11/04. Dx: 25yrs CFS & FMS. Protocol: 200mg Doxy, 500mg MWF Azith, Tini 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3

Jim, I think it's a toss-up. I'd agree more readily with the porphyria theory if there hadn't been significant sleep problems before ever starting the protocol or being exposed to doxy. I can't see that anti-porphyric measures could hurt, but am not sure they're necessary, either. Tis a puzzlement.

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

I still hold with the best bet being Porphoria.  Reason I had a very high titer, therefore likely porphoria, prior to any Abx treatment.  I did had the sleep disturbance as one of the primary factors for seeking a medical workup that was comprehensive for unrelenting fatigue. 

During my initial visit I had vials of blood drawn, recieved neutraceutical supplements to enhance mitrocondrial support for energy production (CPn is quite a thief isn't it for the CFS folks) and with a Rx for a long acting Benzodiazapine to be taken at bedtime to allow me to sleep through the night. 

I had not slept through the night for many years, more than three for sure.  It was a very serious problem for me. Causing multiple problems.  I had had significant sleep problems before even starting the protocol ore being exposed to doxy.  So my humble opinion is from having the problem ,majorly, as the kids say.    I will also say that previous to developing the sleep disturbance I slept very soundly and refreshingly all my previous life.

Happy Holidays to you,

Louise

CFS/ME.  CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
Red

 Louise,

I'm lucky enough to sleep like the dead if I'm not apparently suffering from increased porphyrins.   Other signs usually now appear long before my sleep is disrupted, including:

1.   I usually first start noticing that my hair starts falling out in increased amounts - lots of hair left in the shower.

2.  My skin starts drying out and I get lots of hangnails

3.  My face starts to burn (this is a rosacea symptom)

4.  I start getting more rashes

5.  My urine gets dark (THIS IS A HUGE WARNING SIGN FOR ME)

6. I start getting fatigued, cranky, whiny and have problems with brain fog 

7.  I start getting lots of aches and pains, now particularly in my joints

8.  Tend to be more easily nauseated and have to be careful about gagging myself with my toothbrush in the morning. 

There are probably more symptoms, and I get some OCD and anxiety symptoms and, as I've said sleep problems too, at later stages.  

But the interesting thing is that taking measures to treat the porphyria  (more water, more glucose, MORE CARBS, careful use of FIR Sauna, avoiding alcohol and vegetables in the cabbage family, etc) will start shutting these symptoms down almost immediately... 

I kind of find that once I get to the fatigue, cranky, whiny, brain foggy stage (which seem to be some of the last symptoms that show up, luckily, I'm too far "gone" to figure out what's going on quickly and I usually don't get it until levels drop on their own and I all of a sudden put 2 and 2 together (even though I'm more than well aware of the possibility).  As I've said before, once you're full of porphyria, you're not at a place where you are thinking straight, and you're unlikely to be capable of figuring out what's going on...

 

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Red, I think you were addressing LouD but maybe me.  Does not matter.  I find your post very interesting as much of what you write I have had before being treated with Abx.  I am fair skinned and may have a touch of rosacea and I can say that much on the list has improved for me since my start on Abx 7 months ago/  Now that it is winter I have noticed the minimal hangnails this year just last week I became aware of it and wondered is this part of my improvements.  I have taken Omega-3 for 7 years and that did help but not as well as I am this winter.  

Now about the More Carbs, prior to abx I would suffer more fatigue after carbs taken without a balanced amount of protein and fat.

But now on CAP no longer am so reactive to the carbs, infact in the early days of treatment, it cleared my mind to take them, it was most remarkable for me to have that shift.

Also now I do not have the driving hunger swings that existed along with my unrelenting fatigue.  When you think of all the diruption that is caused by the CPn using our cellular energy to support it's life there was not enough to  keep me functioning  up to speed, so it seems.

I won't revisit cranky, whiney and brain fog just now except to say I am all  to familiar with them from my pre-cap and early cap days.   OK sometimes now too!

I am looking forward to unassisted sleep and do believe it is coming to me!  Can you recall when the sleep disturbances began to clear up for you?  Ten pulses?  More? Less?   Ah we all want specific answer and again we are all individuals.

Happy Holidays to you and yours Red,

Louise     CFS/ME.  CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NAC 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxin sxs x 1 week after pulses.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support
Red

Hi Louise,

If I remember correctly, I was having the tossing and turning sleep thing a lot during early treatment. Prior to treatment though I seemed to sleep like the dead, however for years prior to treatment I woke up feeling what I described as more tired than before I went to sleep. I think the sleep I was getting was over the years becoming less and less restorative if that makes any sense.

Anyway, the tossing and turning sleep thing seemed to clear up in CAP and I was beginning to feel really good by @ 9 months or so. At 11 months I added in Vit D3 (meaning I was taking full CAP + 4000iu Vit D3), and slowly all symptoms of porphyria seemed to build for me until by @ month 13 or so, I was dealing with just about as much porphyria symptoms as I believe I ever had on CAP. By @ month 18 it got so bad that I couldn't deal with it anymore. At that time I was not sleeping very well any nights and nothing I seemed to do could fix it. I kept trying different gut binding agents (to help bind to fat-soluble porphyrins), but they all seemed to make me worse.

I threw in the towel on the Vit D3 and all symptoms stopped, and rather quickly, I might add. In fact for me I felt so good and reacted so little to just CAP, I decided to go the high dose Vit D3+NAC route for a while just to see what this might do for me. I started on 10,000iu of Vit D3 and after a month many of the porphyria symptoms returned, so I quickly went down to 6,000iu. I found this level much more manageable.

After @ 4 months of Vit D3+NAC+Fir Sauna, I was able (the week before Thanksgiving) to up my Vit D3 to 8,000iu daily. I had about a week to two weeks of die-off and increased porphyria symptoms but I've now seemed to stabilize a bit. I'm still finding that I'm closer to the tipping point of the porphyria thing with this increased dose and have to be much more careful right now with taking good care to avoid going over the porphyria edge. Once I stabilize at this level though I'm going to 10,000iu.  Then once I stabilize at 10,000iu I'm thinking I may try to finish up treatment back on the CAP + Vit D3 combo, but that's a bit out in the future still...

My point in this whole VERY LONG post is that I believe the sleep and other symptoms of excess porphyrins can come at any point during treatment, depending on how fast you are killing off the Cpn. Basil also did a great job in showing me that many agents, including many drugs, herbals, foods and even Vit D3 can raise porphyrin levels in some of us, probably depending on levels and foci of Cpn infections in our body...

Does this make sense?

I hope your sleep (and other problems) clear up for you soon. Happy Holidays to you and yours as well. I can't wait to get to see my brother this Sunday...

 

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Wow!  Thats a lot of vit D.  Are you taking that much D every day?  My Rheumy did blood tests on me and told me that my D levels were low.  However, she told me that people have to be careful taking Vit D because it can be quite toxic to your system.  She said if you don't have a deficiency that even 1000iu a day can be bad if taken continuously.  I'd do some research on safe levels of D.  Your porphyria might be a side effect of too much D and not so much die off.  I'd double check.

 

 

 

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

I'm doing 8000units of Vitamin D a day, now that sunny days are gone. We've been doing our homework on Vitamin D here on the site for quite a while and there are several good forum topics on it.

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

People, even doctors might think that high doses of Vit D are toxic because they have an antibiotic effect which can cause die off which might appear to imply toxicity to the body when it might more reasonably be explained by the effect of Vit D on Cpn and other stealth bacteria.  People living in sunny climes might get as much as 10,000 units of Vit D from the sun alone...   We in cloudier and cooler climates are falling seriously below that level.

The 'die off' effect of Vit D might be noticed by older people getting a good dose of sun on their holidays to warmer climes. Three or four days into their holiday they might get a sniffle and sore throat. This has certainly happened to me and to people of my acquaintance.

There is a lot of information about Vit D on this site and it might be a good idea to start by looking here for the information we have gathered over the past two years.

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Red

Hi Darkdaze,

First, thanks so much for note of caution. You never know what someone on the board might or might not already understand.

The exact safe upper limit of Vit D3 is still a controversial subject in medical circles right now, but as Mac and Michele have mentioned, recent research seems to suggest that Vit D3 in doses as high as 10,000iu a day are likely safe (and we would make 10,000iu in our skin from 15-20 minutes of sun exposure daily if we lived near the equator anyway).

Here's a great review article that suggests the safe upper limit should be changed from the current 2,000iu to 10,000iu, and potentially your rheumy might even find this interesting and helpful:

http://www.ajcn.org/cgi/content/full/85/1/6

And here are a couple of great threads on Vit D3 here on cpnhelp:

http://www.cpnhelp.org/the_vitamin_d_page

http://www.cpnhelp.org/vitamin_d_supplementation

The good news is that the info on Vit D3 seems to be getting out. Time Magazine even recently included Vit D3 in its list of "Top 10 Medical Breathroughs for 2007":

http://www.time.com/time/specials/2007/top10/article/0,30583,1686204_1686252_1690393,00.html

No wonder vitacost has recently been having troubles keeping Vit D3 in stock (note to all ordering Vit D3 through vitacost, they often now seem to have it on backorder, so don't wait until the last minute to get refills from them).

My father's doctor said that he thought 2000iu of Vit D3 daily was an excellent idea for my dad. My brother's Neurooncologist OK'd 4000iu daily for my very sick brother without any form of blood test. And his rehab doctor, god love him for being informed, replied to my sister-in-law's question of whether we should give my brother extra calcium in addition to the Vit D3 (this was suggested by his less informed, IMHO, nutritionist) that Vit D3 has been shown to help you absorb dietary sources of calcium better so if anything, less calcium is needed with Vit D3 supplementation. This doctor has done his research...

FYI too, the Canadian pediatric society recently announced that "Pregnant or breastfeeding women should talk to their doctor about taking a supplement of 2000 IU/day" of Vitamin D3:

http://www.cps.ca/english/Media/NewsReleases/2007/VitaminD.htm

And this article discusses two U.S. government-funded studies currently underway testing Vitamin D3 doses as high as 4,000 iu and 6,000 iu for pregnant and nursing mothers respectively:

http://www.canada.com/topics/bodyandhealth/story.html?id=55ca8d6a-ab7f-40b2-a967-373389304980&k=48550

Again, the evidence suggests that Vit D3 is likely very safe, and even more studies suggest that low levels of Vit D3 may lead to ill health.

As I said above though, Vit D3 does seem to lead to a large amount of die-off, so be careful about ramping up on it too quickly, particularly when you are already on the CAP abx...

Thanks again...

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

The bit about large doses of vitamin D being toxic is sort of a medical urban legend. Reinhold Vieth, a researcher specialising in Vitamin D, did an exhaustive search of the toxicology literature, looking for the source of those assertions of toxicity. He couldn't find anything credible. Recently he did a study with administering enormous amounts of vitamin D to MS patients, and found zero toxicity. In that study, he worked his way up to something like 200,000 IU per week, for about six weeks, without finding any signs of toxicity.

After I posted last night I started reading stuff on Vit D here on the site.  There is so much info here, its intimidating.  I was merely relating what my doctor told me about Vit D.  I never thought something as simple as that could be controversial, yet it is.  Heh, imagine that.  I was taking a 2000 vit D3 capsule every few days, but after reading some stuff here I decided to start taking it more regularly. 

 

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

Azithro 250mg MWF, NAC 2400/daily, 1 81mg Baby Asprin daily, recommended supplements from this web site

Red

Hi Norman,

Speaking of, have you seen what  Dr Holick and friends have been up to:

VITAMIN D2 IS AS EFFECTIVE AS VITAMIN D3 IN MAINTAINING CIRCULATING CONCENTRATIONS OF 25-HYDROXYVITAMIN D

I think I'll stick with Vit D3 for the time being though, but it's interesting...

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-
Red

Hi Darkdaze,

Seriously, thanks for relating what your doctor said.    And definitely be careful about the potential for Vit D3 to increase die-off reactions.   Some don't seem to notice this as much as others though...

 

On Combined Antibiotic Protocol for Cpn in Rosacea 01/06 - 07/07, On Vit D3 + NAC since 07/07 and daily FIR Sauna since 08/07

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

 Yes, please be careful with how much vit d you take due to die off.  I take 1000 a day through my vitamins and calcium supplements. I have tried on 3 different occasions adding 1000u a day. and within 2-3 days, I get so depressed, not just in a funk, but very depressed.

Mphs, TN. CFS, hypoT (Hashimotos), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPN Titer 1:256 (normal 1:16); on NAC 2400mg, doxy 100-2xday, azith 250 m/w/f, and pulsing w/flagyl, estriol, progesterone, synthroid

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

Hi,

Paula has been bedridden since Feb 06 and since then has had no sun whatsoever.  We live in an upstairs flat and there is no way for her to go outside.  She is currently taking 1800 units of D3.  Is this enough, when she doesn't get any sun at all?  I was thinking that we she slowly increase it to the suggested 4000 units per day.

Secondly, when we start on the abx, should we reduce it to decrease die-off effect, or do you only need to do that when you start on the Flagyl?

Thanks,

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  1500mg NAC per day Dec07. Building up on supp. before CAP.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPN dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxy Jan08.  300mg Roxy Apr08 Stopped abx Nov/Dec08. Building up on Supps again.

Mark, This is such a difficult call:  yes increase the D gradually to 4000 units per day.   Watch out for reactions and back off for a couple of weeks if it becomes too prominent.   Once Paula is used to that level and you start the flagyl, I would start the flagyl very slowly one tablet at a time with good breaks before taking more.   Ella's pulses went from 1 to 2 to 4 to 6 tablets per pulse.   We continued at 6 for a couple of pulses as she was having marked reactions to 6.   Eventually we arrived at 15 tablets per pulse.  

Michele (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Red, I hadn't seen that paper, but it doesn't seem that interesting. It just found that D2 doesn't actively sabotage the blood levels of D3, not that the two have equivalent effects on the body. There still doesn't seem to be any real reason to mess with D2: D3 is what the body makes, and it's readily available at modest prices. (But by some perversion, prescription pills are all D2.)

Michelle,

Thanks, so we only have to worry about the Flagyl reaction to Vit D and not the other abx like Doxy and Azith etc?

Mark. 

 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  1500mg NAC per day Dec07. Building up on supp. before CAP.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPN dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxy Jan08.  300mg Roxy Apr08 Stopped abx Nov/Dec08. Building up on Supps again.

Our dark daze are here in Canada & I have increased my D to 4500 IU which is about all I can handle due to die off; for the time being anyway.

It is anti chlamydial & cancer so a good thing.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<