Need to talk to someone soon

Need to talk to someone soon.  I'm feeling a little desperate at the moment.  Don't know how to IM, willing to learn or willing to just e-mail back and forth. 

I think i have felt particularly impatient, depressed, sad, angry and somewhat aggressive these past several days.  My eyes are burning, about to give up on wearing contacts for a while, hard to concentrate, ears are ringing out of my head, and the smallest thing keeps me lying awake for hours, only to find I can't get out of bed the next morning to make it to work on time. I certainly don't feel well put together either on the outside or inside-it's all I can do to just get there. Suits and heels are out of the just question for now. I'm lucky if I even get make-up on before getting out the door. I feel very self-conscious about my "professional" appearance lately.

I'm taking Wellbutrin 300mg (actually Bupropion-generic), Nortriptyline 40mg, Klonopin 0.5 (clonazepam) twice a day, and Neurontin, but it's just taking the edge off these symptoms.

I think more than anything I need to hear from some of you who have had a similar history to mine.  Because i have such limited time on here, I've had a hard time being able to read the patient stories to find those of you who have been through some of the same health issues as I and/or have felt the way I'm feeling right now.  I'm still not good at navigating around the site and it's just frustrating me.

I'm almost 1 month into treatment, started Doxyi 1 week ago and added 2nd daily dose yesterday.  I'm still taking pain meds 1-2 times/day to deal with headaches and NACi flu, but NAC flu has gotten a little better.  Doc decided to have me take the 600mg NAC at night, stop the morning dose, and go ahead and start and then increase the Doxy. I still feel bad, but appears I will be able to handle Doxy better in general and hopefully the double dose better than double dose of NAC for now.

My naseau has increased again, particularly after taking the NAC in the evening so I am having to take Phenergan to counteract that. I'm munching on soda crackers and diet sprite (not on my special diet) when I can't seem to eat anything else just to activate the phenergan. Apparently I'm having candida die- off because i am craving sugar daily now, and unfortunately giving in most of the time.  I'm a smoker, tried to quit a while back until I realized can't fight the stress of illness and quit smoking at the same time (although i want to quit smoking). I know it adds insult to injury.

The plan now is to continue the single dose of NAC, double dose of doxy and add 1st evening dose of Erythromycin next week, then try to increase it to twice a day the following week.  If I don't die from all these toxins floating around in my system, I'll then move on to the pulses. I have gotten on some supplementsi, CoQ 10, Selenium, Omega 3, Vit E, C, all B's, Melatonin">i, what i could afford for now.

Can someone please help?

Comments

 Denise- almost forgot. The

 Denise- almost forgot. The NACi can be taken later-- Sarah did not start on anti-EBi programme (like the British spelling?) until the end of her CAPi-- or done more gradually along the way. We like it earlier because it is protective of the liver, but like everything on the CAP, you have to find your own pace. We tend to think that the most important thing first is to stop replication (ie doxyi and azith) as this is the phase that uses the most of our energy and increases/spreads the infection. So I'd get that first and then winnow down the EB's as you can tolerate.

But... If you are having really strong reactions to it, it suggests that you have a big load of EB"s, which means that they are waiting there to infect more cells. So it's a good idea once you've stabilized on the other abxi to also start to winnow those down. You could also try amoxicillini, which was the first agent Dr. Stratton used against EB's, and see if your reaction is any different. 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & 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

Jim, Thank you so very,

Jim,

Thank you so very, very much for all the generous info.  I am so happy that Erythro could be a substitute for azithro or biaxin.  That gives me hope about being able to do the CAPi.  I will see if my MD will call Dr. Stratton.

I noticed that being on Erythro for the first time in years, I felt so much better overall -- not just relief of bronchitis, but more energy, that heavy leaden feeling somewhat lifted -- classic response to abxi huh?  It was like a resurrection -- such a blessing.

When I told a friend here of my experience with Erythro, she noted that Erythro kills Cpni.  I had no idea of this.  And suddenly thanks to your comments and hers, I feel like there is hope for me to begin the CAP.

I was very dubious about my ability to tolerate azithro and wasn't sure about Biaxin, so this is the answer to a prayer.  Sorry to get so worked up over this, but with my reaction to Erythro, it makes moving ahead with the CAP really feasible for me.  It also makes it clear that if I am feeling so much better with an abxi, then there are TONS of little bacteriae running around that need to be cleared out. 

I'm taking 1,000mg/day and no side effects except for a little queasiness (I take it with food) and a little fatigue and sleepiness after I take it.  Of course, I've just been on it for 3 days.  I hope this lack of negative reactions isn't a bad sign?

And thanks for the comments re NACi which I had big problems with.  I so want to start the CAP and all of this is what I needed to hear.  Thank you again Jim.

denise

P.S.  I'm beginning to wonder if I don't just have Cpn alone as my "CFSi" has no fibro accompanying it at all, no orthostatic intolerance etc.  Although my Epstein Barr tests positive.  Anyhow, onward, lift the sails, clear the decks, we're moving out of port!

63 year old woman feels like 80!  CFS since 1998.  Severe fatigue.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Working with nutrition, vitaminsi before starting more abx.

63 year old woman feels like 80!  CFSi since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

Denise- Erythromycin is

Denise- Erythromycin is listed under macrolides in the Mitchell/Stratton patent materials as anti-chlamydial in the RB form. I seem to vaguely remember that they found it problematic in long-term useage, but please don't quote me on that as it's been a couple of brain-fogged years since that conversation with Dr. Stratton. I would have your doctor talk to Dr. Stratton directly on this.

Anti-RB Chart from Patent 6884784Anti-RB Chart from Patent 6884784

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & 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

Laptop and desktop computers

Laptop and desktop computers are down,  I feel lost not being able to stay in touch with you all.  Hopefully I'll be able to get back on back Wednesday or Thursday. 

 

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, supplements and vi

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

 Worth overdoing... some

 Worth overdoing... some excerpts from the patent--

...A high carbohydrate diet should be maintained to promote production of glucose (Pierach et al., Journal of the American Medical Association, 257:60-61 (1987)). Approximately 70% of the caloric intake should be in the form of complex carbohydrates such as bread, potato, rice and pasta. The remaining 30% of the daily diet should comprise protein and fat, which should ideally be in the form of fish or chicken. Red meats, including beef, dark turkey, tuna and salmon, contain
trytophan. Increased levels of tryptophan in the liver inhibit the activity of phosphoenol pyruvate carboxykinase with consequent disruption of gluconeogenesis. This accounts for the abnormal glucose tolerance seen in porphyriai...

...Sucrose and fructose should be avoided (Bottomly et al., American Journal of Clinical Pathology, 76:133-139 (1981)) because the ingestion of large amounts of fructose trigger hepatic gluconeogenesis which then decreases the available glucose which is derived from glycogen breakdown within the liver. It is recommended that sport drinks which contain glucose be consumed.
It is recommended that a patient suffering from porphyria avoid milk products. Milk products contain lactose and lactoferrin, and have been empirically shown to make symptoms of porphyria worse.

Multivitamins containing the B complex vitamins should be administered daily (e.g., one or multiple times), preferably in excess of RDA, to enhance glucose availability. Hepatic breakdown of glycogen with generation of glucose is assisted by taking these multivitamins that contain the B complex vitamins. Pyridoxine minimizes the porphyrin related porphyrial neuropathy. B complex vitamins include folic acid">i (e.g., 400 µg per dosage; 1200 µg daily maximum); vitamin B-1 (thiamin;
e.g., 10 mg per dosage; 30 mg daily maximum); B-2 (riboflavin; e.g., 10 mg per dosage; 30 mg daily maximum); B-5 (panothenate; e.g., 100 mg per dosage; 300 mg daily maximum); B-6 (pyridoxine; e.g., 100 mg per dosage; 300 mg daily
maximum) or pyridoxal-5-phosphate (e.g., 25 mg per dosage; 100 mg daily maximum) and B-12 (e.g., 500 µg per dosage; 10,000 µg daily maximum). The preferred method of administration is oral for the majority of these vitamins (twice daily), except for B-12 for which sublingual administration (three-times daily) is preferred. It has been discovered that one important effect of this secondary porphyriai in some patients is the production of IgM and IgG antibodies against
coproporphyrinogen-III. These antibodies cross-react with Vitamin B12 (cobalamin) and can thus cause a deficiency.
Vitamin B12 supplementation (e.g., parenteral cobalamin therapy) can remedy the deficiency.

D. Reducing Porphyrin Levels
Dietary and pharmaceutical methods can be used to reduce systemic porphyrin levels (both water-soluble and fat-soluble).
Plenty of oral fluids in the form of bicarbonated water or "sports drinks" (i.e., water with glucose and salts) should be incorporated into the regimen. This flushes water-soluble porphyrins from the patient's system. Drinking seltzer water is the easiest way to achieve this goal. The color of the urine should always be almost clear instead of yellow.


Activated charcoal can be daily administered in an amount sufficient to absorb fat-soluble porphyrins from the enterohepatic circulation. Treatment with activated oral charcoal, which is nonabsorbable and binds porphyrins in the gastrointestinal tract and hence interrupts their enterohepatic circulation, has been associated with a decrease of plasma and skin porphyrin
levels. Charcoal should be taken between meals and without any other oral drugs or the charcoal will absorb the food or drugs rather than the porphyrins. For those who have difficulty taking the charcoal due to other medications being taken during the day, the charcoal can be taken all at one time before bed. Taking between 2 and 20 grams, preferably at least 6
grams (24×250 mg capsules) of activated charcoal per day (Perlroth et al., Metabolism, 17:571-581 (1968)) is recommended. Much more charcoal can be safely taken; up to 20 grams six times a day for nine months has been taken without any side effects.


For severe porphyria, chelating and other agents may be administered, singularly or in combination, to reduce levels of porphyrins in the blood. ...

Quinine derivatives, such as but limited to hydroxychloroquine, chloroquine and quinacrine, should be administered to the patient daily at a dosage of from about 100 mg to about 400 mg per day, preferably about 200 mg once or twice per day with a maximum daily dose of 1 g. Hydrochloroquine is most preferred. The mechanism of action of hydroxychloroquine is thought to involve the formation of a
water-soluble drug-porphyria complex which is removed from the liver and excreted in the urine (Tschudy et al., Metabolism, 13:396-406 (1964); Primstone et al., The New England Journal of Medicine, 316:390-393 (1987))...


E. Mitigating the Effects of Porphyrins
Antioxidantsi at high dosages (preferably taken twice per day) help to mitigate the effects of free radicals produced by porphyrins. Examples of suitable antioxidants include but are not limited to Vitamin C (e.g., 1 gram per dosage; 10 g daily
maximum); Vitamin E (e.g., 400 units per dosage; 3000 daily maximum); L-Carnitine (e.g., 500 mg per dosage; 3 g daily maximum); coenzyme Q-10 (uniquinone (e.g., 30 mg per dosage; 200 mg daily maximum); biotin (e.g., 5 mg per dosage; 20 mg daily maximum); lipoic acid (e.g., 400 mg per dosage; 1 g daily maximum); selenium (e.g., 100 µg per dosage; 300
µg daily maximum); gultamine (e.g., from 2 to about 4 g per dosage); glucosamine (e.g., from about 750 to about 1000 mg per dosage); and chondroitin sulfate (e.g., from about 250 to about 500 mg per dosage).

The above-mentioned therapeutic diets can be combined with traditional or currently recognized drug therapies for porphyria.
In one embodiment, benzodiazapine drugs, such as but not limited to valium, klonapin, flurazepam hydrochloride (e.g., Dalmanc™, Roche) and alprazolam (e.g., Xanax), can be administered. Preferably, sedatives, such as alprazolam (e.g.,
Xanax; 0.5 mg per dosage for 3 to 4 times daily), can be prescribed for panic attacks and flurazepam hydrochloride (e.g., Dalmane™, Roche or Restoril™ (e.g., 30 mg per dosage)) can be prescribed for sleeping. The rationale is based upon the presence of peripheral benzodiazepine receptors in high quantities in phagocytic cells known to produce high levels of radical oxygen species. A protective role against hydrogen peroxide has been demonstrated for peripheral benzodiazipine receptors. This suggests that these receptors may prevent mitochondria from radical damages and thereby regulate apoptosisi in the hematopoietic system. Benzodiazepines have also been shown to interfere with the intracellulari circulation of hemei and porphyrinogens (Scholnick et al., Journal of Investigative Dermatology, 1973, 61:226-232). This is likely to decrease porphyrins and their adverse effects. The specific benzodiazipine will depend on the porphyrin-related symptoms.


Cimetidine can also be administered separately or in combination with benzodiazepine drugs. Cimetidine has been shown to effectively scavenge hydroxyl radicals although it is an ineffective scavenger for superoxide anion and hydrogen peroxide. Cimetidine appears to be able to bind and inactivate iron, which further emphasizes its antioxidant capacity. Cimetidine also
is an effective scavenger for hypochlorous acid and monochloramine, which are cytotoxic oxidants arising frominflammatory cells, such as neutrophils. Cimetidine thus would be expected to be useful for the therapy of free-radical-mediated oxidative damage caused by chlamydial porphyria. Recent studies in Japan have found that cimetadine is effective for treating porphyria. The recommended amount of cimetadine is about 400 mg once or twice per day.

 

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & 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

Thank you for pulling this

Thank you for pulling this together for me, Jim.  Unfortunately, I am on a low carb, low fiober diet right now for my IBD (small intestines won't digest things very well!) However, i will comb through the rest of this as it appears to be very useful information! 

Thanks for answering and for being available, truly.

 

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, supplements and vi

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Lynn, My irritable bowel

Lynn, My irritable bowel symptoms disappeared after starting abxi, so maybe you have that to look forward to, as well.

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

Some people are reporting

Some people are reporting that cholestyramine works better than charcoal. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

 Lynn- The page for

 Lynn-

The page for porphyriai and it's treatment is here:

http://www.cpnhelp.org/secondaryporphyria<

It's a bit too long and detailed, but a couple of reads will help (we really need to revise and simplify some things, but no one has the time!). Scroll down the page to where it says "Excerpted from: THERAPY OF CHRONIC CHLAMYDIAL INFECTIONSi INCLUDING THEIR ASSOCIATED PORPHYRIA AND VITAMIN B12 DEFICIENCY: SEVENTH VERSION" and look at the recommendations. It will include the things on charcoal and other porphyria measures, incuding use of glucose.

The material on gluconenisis is actually in the Mitchell/Stratton patent, I'm not sure if I can comb through it to find the reference for you. It's more than you need to know right now anyway.

Personally, I have not found chlorella to be an effective antiporphyria measure, and there is only anecdotal evidense that it functions in this way at all, for some people. More reliably, you can sequester the fat soluble  porphyrins which tend to get reabsorbed by using:

Charcoal-- 12 capsules 2-3x per day... but you have to not take it within 2 hours of meds or food, so it can really be tough to time.

Cholestyramine (Questran) or Welchol- prescriptions which bind cholesteroli and also porphyrins. Pricier but more effective than charcoal I think, and can be taken with food.

CAP for Chlamydia pneumonia since 11/04. 25yrs CFSi & 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

Lynn, just a comment about

Lynn, just a comment about charcoal.I find it makes me incredibly thirsty so that I am waking up every hour or two throughout the night to drink. Sarah recommended trying Yaeyama Chlorella, a Japanese seaweed supplement that you can buy at the health food store. It does the same thing but without the thirst.

Nancy
PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Hey Lynn! I suffer from

Hey Lynn!

I suffer from depression so I can say, do what you need to do to keep that in line.  After 8 years on pharmaceutical antidepressants my natural MD recommended I wean off & take natural like Inositol, SAMe or Lithium for example.

What you are now experiencing will become familiar & with familiarity you will know what to do.  You must have glucose (can be purchased cheaply at wine making stores, so I am told) Vit. C for flushing & charcoal caps.  These items will sop up the toxins (to put it in laymans terms) It would seem to me what you are feeling is caused from the resulting die off.  Until you get the symptoms under control with the detoxifying, I would hesitate to move forward adding any more meds.

I would not take the NACi later at nite.  I split my 2.5 grams dose between AM & PM dinner vitaminsi-(no later than 6-7 ish if I am aiming for an early bedtime).  Take your time to ramp up your abxi & NAC dosages as it appears, with work & such you are having a difficult time.  FYI, when I take my PM vitamins including the NAC too late, it affects my sleep which is heavily medicated.

Take your time...this is not a race.  You go at your own pace & I think you will look back on this experience of die off toxins & counsel others as we are counselling you now.  Your body is telling you to slow down, get a better balance before increasing anything.

Feel free to reach out whenever you like.  I am on Mountain Time in North America.  Pretty much anytime during the day you will find someone here.  Reach out when you can.

Keep that depression under control!  If you ever feel hopeless, call someone you can trust immediately.  Some work health plans have psychologist emergency numbers to call.

Blessings for a complete well paced recovery

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, temazepam, novocyclopine, allergy formula, 2 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 10-30-07 3rd pulse 2 X 250 mg 2day

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Lynn, You are where I was

Lynn,

You are where I was about six weeks ago and I was just on NACi.  It's a dark night of the soul and I too felt very frustrated with my lack of energy to read, lack of time to research and just needed someone to TELL ME WHAT TO DO. 

 Totally agree with Jeanne on the meat versus milk for us newbies.  I promise it gets better but the one thing I got from the beginning was to listen to my body.   I know I'm getting my old "go slowly" warnings but I promise that if I get hit hard I will be backing down.  I want to get better but I want to do it and maintain my job, I have to work so if that requires that I go slower so I can function more effectively I will.

I highly concur that you might want to back off...don't add anything else if you are currently feeling bad.  Right now I'm pretty good so I'm okay with adding 2 meds, I won't add the infrared or additional NAC until I feel this way again.

Give yourself permission to slow down, I had a serious mental meltdown and a very generous person on this list took the time to hold my hand via email to offer her # and opened herself to me to keep me sane.    The hardest part is given up the person you used to be...but YOU HAVE TOO for now...just temporarily, that's what I've promised myself.   

 This is a mental as well as physical roller-coaster and this place is my seat belt....we are here for you.

Lisa  

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NAC 1200mg.  11/6 NAC/Doxyi 100mg 2x;Azith MWF

Aug 07 -  EBVi<i</Mycoplasma/CFSi/FM, low NK cells. CAPi 10/3 Amox 500mg 2x/NACi 1200mg.&nb

Lisa or Jim or anyone -- So

Lisa or Jim or anyone --

So encouraged by Lynn's brave plunge into the CAPi

I'm on Erythromycin for a severe case of bronchitis.  Can Erythro be substituted for the Azithro/Roxi/Biaxin in the CAP??  I tolerate Erythro very well so if it can be used instead of other macrolides, it would be such an enormous help to me.

Also, is it absolutely 100% necessary to include NACi? I know the answer, but keep hoping there is some "wiggle room."

Still here!

denise

63 year old woman feels like 80!  CFSi since 1998.  Severe fatigue.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped.  Working with nutrition, vitaminsi before starting more abxi.

63 year old woman feels like 80!  CFSi since 1998.  Severe fatigue and awful reverse sleep main symptoms.  No Fibro.  Tested positive for CPN 3/07.  Severe reaction to azithro (begun slowly in 5/07) - stopped. 

Oh, Lisa, thank you for

Oh, Lisa, thank you for nailing the "hardest part is giving up the person you used to be...but YOU HAVE TOO for now..." I know I get stuck in this place so often.  I keep going back in my mind to what I used to accomplish while I sit/lay and look at my dirty house that used to be spotless, along with the dirty dishes in the sink, clothes that need washing piled high, lawn that needs mowing, flower bed that needs trimming, etc. etc. etc.

But my energy has to go straight for work. Thank you for validating that this is a mental rollercoaster as well and not just a physical one.  I'm going to do my best to remind myself of that when I feel like raging or giving up. 

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, supplements and vi

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Hello Lynn... all of us here

Hello Lynn... all of us here say, "it will get better" (and it will) BUT while you are going though it, it's tough and frightening.  You are sick and have no one who really understands what's going on (except here :)

I will say this and mean no offense to anyone whatsoever -- to read others' words here are encouraging and needed but in my experience I reflect back (and to use an anology regarding new Christians and understanding the words of the Bible), sometimes these well-meaning, encouraging words from those on our forum who are a year or two into the protocol, are like "feeding meat to a baby" (you can't chew it or swallow it to have it do you any good because your level of experience/knowledge isn't there yet!) -- you don't understand it YET -- but you WILL further down the road).

It took me OVER A MONTH to build my tolerance to Doxyi (100 mg) and then it took another month and a half to build up to 200 mg/day.  I have been ill since March (actually Nov/Dec o6) and started the protocol the end of May 07. I was not able to maintain my employment because of this illness and  am still having pretty rough days of incapacitation.    I do  know, though, this is the only route we can take to get this bacteria out of us.

Perhaps you need to slow your doseages down a bit, especially since you are trying to work.  Pamper yourself as mentioned above, don't try to push yourself or you'll feel worse.  Reach out to your higher spirit (whatever you believe in).  It will be better, but perhaps you need to take it a bit slower, you will be okay..Embarassed

Jeanne ~CPNi 4/2007; also HHV6, EBVi, CFIDS/FM; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxy & 250 mg AZITH M/W/F, supplementsi<

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Lynn, we mostly support each

Lynn, we mostly support each other through this site, as we are scattered over a large area.   If you mean you want to TALK to someone in person, you will need to give us a rough idea where you live so that people in the same time zone as you and on the same continent can be in touch with you to exchange telephone numbers.  

As regards your treatment, it takes a while for people to be able to tolerated the full protocol.   Only go as fast as your body can tolerate.   Think that as soon as you have started even on a modest dose you are reducing the Cpni load on your body.   We often think of vitamins and supplementsi an benign in terms of reaction, but NACi, Vitamin Di and according to the individual other supplementsi too can give you strong reactions.   The good news is that these reactions get better in time.

Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, 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.

 Lynn- Your symptoms sound

 Lynn- Your symptoms sound very familiar to me from my first year of treatment:

  •  "impatient, depressed, sad, angry and somewhat aggressive these past several days."
  • "My eyes are burning"
  • "hard to concentrate,"
  • "ears are ringing out of my head"
  • " i am craving sugar daily now,"

 This plus the nausea is real suggestive of porphyriai symptoms. Have you been doing stuff like the charcoal and lots of water? The sugar craving along with this is probably not candida, although some of us myself included have this too, but the disturbance in glucogenesis from porphyria and the increased cellular absorbtion of glucose by the bloodstream initiated by Cpni, as well as the ATP deficit. Glucose is the answer, and it will help shut down porphyric production. The glucose can even help the nausea and paradoxically restore appetite.

These are really familiar reactions to many of us, so I'm sure a number will chime in.

You IM by clicking the "inbox" link and then the link to send messages, or by clicking the person's name on a post and then "send private message" link.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & 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

Ok, Jim.  This makes snese

Ok, Jim.  This makes snese because I really didn't feel like it was candida die-off, sugar craving feels different.  Haven't tried charcoal-what form does it come in and do I get it OTC at health food sotre? Do you mean take glucose or just go ahead and eat some sugar?

Where can iread more about the glucogenesis, porphyric, ATP deficit? 

Should I be taking DHEAi also? 

Thanks for the im note.

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxyi 200mg, Methyl B-12 Injections, supplements and vi

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Lynn, If you still feel so

Lynn, If you still feel so awful, why have you just doubled the dose of doxyi, which will surely up your cpni die-off? (Jim, it's time to talk about anything worth doing is worth overdoing... Wink)   Too much, too soon?

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 suppose just following

I suppose just following what Doc wanted me to do, I don't know if he thinks I should just dive in head first or what.  But truly the Doxyi does not make me feel near as bad as that one dose of NACi.  He even suggested if it doesn't get better I may need to switch to L-Methionine. Are you familiar with that? 

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus">i, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi, Chronic Candida and EBVi<

NAC 600mg, Doxy 200mg, Methyl B-12 Injections, supplements and vi

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Oh baby! Lynn, you're going

Oh baby! Lynn, you're going through a rough time! But it will get better, I promise. It's amazing that, with all you've got going on, that are still able to maintain a proessional career at all. Give yourself a hand for that! Especially with CFSi! I won't tell you that this will be an easy go, but you apparently have determination and a fighting spirit. I don't know if you live alone or have family or whatever, but do yourself a favor. Let the little things go. Pay your bills and either let someone else clean your house or let it be dirty. Order in food and cut out the diet soda (aspertame might be harmful).I personally wouldn't try to take NAAC at night. Its like trying to swallow acid. I take it, like you, only once a day and immediately after dinner, my biggest meal. I also don't know where you live but for me on the east coast of the US, the leaf mold is drivig me crazy. My eyes are burning and I have never been able to wear contacts. Plus my sinuses hurt and my nose is often stuffed. I've been incredibly tired since the weather turned colder. And for many people the darkening season promotes depression as do some of the meds. There are no instant cures for the anger, impatience and depression. After all, you SHOULD be angry, impatient and depressed. But it will get better! If I were more savvy I would tell you how to register for AOL instant messenger and we could "talk" but my son set it up and I don'tknow how. Let's email, ok?

PPMSi-misdiagnosed 5 years-diagnosed last spring. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. Rockville,Md.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13