New kid on the block: Glad to find you!

Hello everyone-I'm so glad to find this site and others who understand what I'm going through!  I have suffered for at least 17 years with various illnesses that I now see may all be related to CPni.  My most recent addition to the plethora of illnesses I've experienced is severe tinnitus">i with 5-10% hearing loss. I recently had to purchase hearing devices, $3000 worth to drown out the ringing noise as it was driving me insane, literally! Finding out about CPn has made me feel like I have found a gold mine, thanks to my doc, (MD and toxicologist) that knows how to think outside the box. Sure has given me renewed hope. I actually found out I had it after my friend was diagnosed with it.  I had referred him to my doc as he had been experiencing CFSi and ADD symptoms.

I was referred to this Doc as a last resort, January 2006, just before going to Mayo Clinic, and was sent to him for FMSi.  He diagnosed my IBD within 10 minutes after my seeing at least 28 specialists (over the course of just a few years) and started me on the special carbohydrate diet which began my actual healing process. September 2006 I found out I had EBVi (titers really high) and was put on leave of absence from work and bed rest for 3 1/2 months. Forced my way back to work at the end of January 2007 just to survive financially.

Anyway, I went with my friend as a support to see my Doc. After discussing my friend's diagnoses of CPn and Mycoplasma Pneu, I mentioned I was having another bout with CFS. As an afterthought I asked doc did he think I should get tested for CPn too?  He said I should, and low and behold I have it much worse than my friend! and he has a bad case of it himself. Doc said I was probably the second highest levels of all his patients ever.  By the way, is anyone having relationship issues due to the symptoms of CPn?

I started NACi 2 weeks ago and was suppposed to have already moved from 1 to 2 a day, but it's extremely hard on my body causing me to feel like I have the flu. I'm having to take pain medicine just to deal with all the toxins floating around in my system right now, as well as extreme headaches.  I work full time, am the sole provider in my home and have felt seriuosly challenged with every day life and just praying I make it through each day.

My difficulty with memory loss, lack of concentration, extreme fatigue, depression, anxiety and sleep issues have really challenged my performace on the job, which is something I've never had to deal with. I've always done well regardless of the type of job I have had. I am a psychologist and due to my illness, I had to close my private practice and stop traveling the U.S. conducting workshops over 2 years ago, and also take a much less stressful job just to survive. 

Luckily, my parents have been a great support emotionally and financially, helping me to make ends meet. I worked a second job for the past 9 weeks, 2 nights a week, just for the additional money and it about killed me! My saving grace was that I REALLY like teaching college students or i don't think i could have pulled it off.  Will not be teaching after hours now again until maybe January.

In the last 2 1/2 years, in the midst of my debilitating illnesses, I have also gone through a divorce, had to file bankruptcy (I had impeccable credit), lost my car and other possesions, and lost my best friend amidst other major life crises and changes.  There were times up to the last 2 months or so that I truly believed not to live would be better than what I was going through.  I feel comfortable saying all this because i know there is bound to be others of you who share a similar story.

Doc says I may not be able to increase NAC to twice a day, so I will probably be adding the doxycyline pretty soon.  He told me not to start it until i have taken the NAC for a full week without it making me feel bad.  Not there yet, but can see a little improvment.

How long has it taken some of you to fully rid your system of the CPn and Mycoplasma Pneu and feel well?  Is there really hope that I might actually feel "well" or "normal" in the future?  Clearly i think i haven't felt that way in at least 12 years.

Thanks for listening. I look forward to hearing back from some of you.

Lynn

Comments

Welcome Lynn, You are

Welcome Lynn,

You are displaying the typical reactions we have come to expect from taking NACi and antibioticsi.   The treatment of Cpni is not a bed of roses, and goes counter to what we have come to expect from taking antibiotics, ie we takes the pills and in a few days we get better.   Many people, especially those who like you and I have been ill for a long time with a multitude of different diseasesi and symptoms, will feel worse before we feel better.  

The progress is subtle and is sometimes difficult to realise, but with hindsight we can  see that aspects of our illnesses have dissipated.   For me the ability to breath with my mouth shut, the regrowth of my hair, and a reduction in the pain in my joints and gut are tangible evidence that the CAPi is working.

Michele (UK) GFAi: Wheldon CAP 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.

Thanks for the support,

Thanks for the support, Michele. Now that I know what to expect, I won't be caught off guard. I didn't have this much trouble breathing before starting the NACi so it confused me. Also the tinnitus">i is worse which was unexpected as well.

Its crazy how one moment I'll think 'I'm doing pretty good right now,' then I feel blasted out of nowhere only an hour later and all I want to do is go to bed! Yell I'm glad I found "ya'll" as I know you will be a lifeline in the rather undesirable, misunderstood, frustrated hole that i live in right now.

Lynn

Chlamydia Pneu, Mycoplasma Pneu, Inflammatory Bowel Diseasei, Tinnitus, History of Fibromyalgiai, Partial Temporal Lobe Seizures, CFSi and EBVi<

Meds: NAC, Doxycyline, and Erythromycin, Methyl B-12 Injections

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

Welcome Lynn, yes, in a sad

Welcome Lynn,

yes, in a sad way, your symptoms are all too familiar for many of us with our chronic illness.  The great thing is you are here & have the support of doctors!

I would recommend getting as many of the vitaminsi as you can manage & afford.  You can see from my signature I worked myself up to the full dose of NACi & then I added the abxi slowly.

The "flu like" symptoms are normal too!!  What you need to do is get the items like Vitamin C, ascorbate for flushings, or charcoal capsules & or glucose for "sopping up" the toxins left over from what your liver, spleen & kidneys cannot get rid of.  These toxins also are attributed to "depression" (I supplement Inositol for this) & all kinds of wierd & wonderful symptoms like anxiety, aggression.  some of us have these little episodes of stuff that blurts out of our mouths like turettes!

All the more reason to get rid of the nasty critters.

When you can, read the handbook.  I know when I started I had to read things 5 times due to the fog associated symptoms.  Now, I mostly read things about 2 times, so it is getting better slowly.  Now I have the ear ringing, I guess the critters are in my brain, looking forward to having this symptom abate as well!

Welcome to our madness...The MAD CAPpers

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, 9-30-07 2nd pulse 1 X 250 mg Metroi<

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<

Hi Lynn, welcome to our

Hi Lynn, welcome to our community. Here's a tip about COQ10. I recently ordered some COQ-Quick from iHerb.com It's made by Source Naturals, my favorite supplement company. It is a lozenge that is orange flavored and dissolves in the mouth. Good for the heart and energy production--but make sure to take after food as it can make one a little queasy. As for the ups and downs of the treatment, read my blogs. It took lots of will to keep going at times and lots of patience but today I am in a much, much better place mentally and physically. Hang in there. We are here for you! Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi. Doxyi, Amoxy, Flagyli pulses.

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Hi Lynn, and welcome to the

Hi Lynn, and welcome to the forum.  I'm very new here as well, as you can see by my signature.  I really didn't begin taking all the recommended supplementsi until one month ago, so I was late getting started with that.  I would second MacKintosh's suggestion to get started on all the supplementsi as soon as possible.  I think that's a support to my body that was missing in my early phase of antibiotic treatment.

You are very fortunate to have a doctor who's familiar with Cpni and its treatment.  I've had to research everything on my own and ask my doctor to prescribe for me.  I feel as though I'm treating myself.  If not for this site, I would be lost.

I can echo some of Louise's comments about the first good things to come from this treatment for me.  The first, and most noticeable, was the lifting of the brainfog.  Also, I am walking fast again.  Fast is my normal pace for walking, and I realized early into the CAPi that it had returned.  Like Louise, I also seem to be having an easier time with the sleep issues.

I'm glad you've joined us, and I hope we can find our way through all of this together!  There are many here we can learn from.

Take care - be well. 

Finch - Western PA USA

ME/CFSi since 1991 - CPn diagnosed June 07 - began Cipro 750 mg 2x per day - added NACi 600 mg 2x per day July 07 - Stopped Cipro and began Doxyi 100mg 1x per day on 9/18/07 - Azithromycin 250mg M-W-F started on 10/10/07.

ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.

Lynn, Wecome to CPnhelp. 

Lynn, Wecome to CPnhelp.  And that is truely what this internet community offers.  We all want to be well and are willing to work the process of clearing the bacteria from our systems. 

And it takes time. And that is hard to realized when many of us have had such diminishing quality of life for many many years in some cases.   So we understand the toll that the downward spiral of the progressiveness of chronic illness takes in peoples lives. 

From what I have been able to see is that there are many folks here that have had brilliant careers that have been challenged by the symptoms of these infectionsi.  There are folks that are much improved and getting their lives back.  It is so supportive to read some of these stories when one is feeling hopeless.  There is hope here!

As you read past posts and figure out the layout of this site you will begin to learn more about the folks that take these protocolsi on as a path to improved wellness.   It is not a promise, but a real possibility for improvement over time. 

More folks will speak about their improvements. And although it may be hard to sit and read past posts, what I have found is that by identifying users with similar backgrounds and looking for their blogs and topics, I can get answers to many questions that pertain to my presentation of symptoms.

I also have the CFSi/ME sort of presentation.  It seems to me that those presenting this way with these intracellulari infections, at times, need to progress on the protocols, more slowly and yet in a steady way to be able to meet some of their life obligations during the start up of their treatment. 

Next week, after seeing my new doctor I will begin progressing on the protocol and adding the balance of the protoco to NACi and Doxyclycline.   I have been at this level now for 4 months.  I can now walk faster with less fatigue and I remember more, have some sense of humor, and am more emotionally stable.  For the most part sleep much better.  Some of my symtoms have gone or deminished, many of them became worse before they improved.  I am ready for a deeper level of treatment and I realize that I may have a long way to go.   I still want more wellness and mental clarity and do believe that it will return.

You are fortunate that you have treatment with an understanding doctor.  Many folks are looking for such open minded providers. 

I continue to have gratitude for the sharing and insight provided here freely by the creators and participants of this website. 

It is important for me to feel fortunate.  Lets me practice that attitude of gratitude in the midst of the difficult moments.

Again welcome, Louise.

Louise, USA, Northern New England. CPn, Bb(Borrelia B., Lyme,) CFS.     Started CAPi 6/24/07 Doxy400, NAC1200.  Currently 9/24/07, Doxy 200 mg, NAC 2400 mg. 

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

Thank you Louise! You were

Thank you Louise! You were the first comment i have received.

I just got up, 12:30 which is my norm for the weekends.  Aching all over, tremendous headache, things I need to do but can't find the energy. I came straight to the computer and when I turned it on and found that several people had  responded to my blog i almost cried. What a blessing to find this site.

Gratitude is something I struggle with lately and to hear someone speak of it pricked my spirit, I had not really realized how ungrateful i have become  typically I'm very optimistic, and encourager, and certainly full of gratitude. Thanks for nailing that one for me!

You all do make me feel i have hope now.  I'm new to forums and such so it will take me a while to figure it all out.  But I did go to patient stories last night looking for someone with a similar story.  Great idea to then look at their blogs (if I can figure out how to do it!)

I'm glad to hear it's not just my body wanting to take it slow with the meds, I just thought it was me.   Although I was surprised to hear you have been on your first level for 4 months, in light of the years I have felt so crummy, I guess months of treatment is nothing if it means getting well.  Doc probably didn't go there with me yet because he may have felt i couldn't handle hearing how long it may take.

Thanks for also sharing that you have been emotinally unstable.  I'm on anti-depressants, yet still crying a lot, very sensitive.  I have felt SO emotionally unstable, anger, irritablity, just crazy mood swings out of nowhere. Thank you for validating that for me.  I honestly was not sure how much of it could be contributed to the illness.

Thank you for responding...my day will be better because of it.

 

 

Lynn

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

Meds: Amino Acids, Doxycyline, and Erythromycin 

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, We understand your

Lynn, We understand your relief, which by itself may help you. If you have not already received a note that is helpful, you will very soon. Since you are still working and are able to function, there is great hope that you will be able to handle this and continue living a full life. Begin with the other supplementsi as soon as possible. They help immensely. Best to you.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 46 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Katman: Thank you for

Katman:

Thank you for responding. Yes I've been working again since February out of necessity.  I was off work 4 months last September-January so am glad i can at least force myself through it now.  What other supplementsi do you recommend?

Lynn

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

Meds: Amino Acids, Doxycyline, and Erythromycin 

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, You need to read, and

Lynn, You need to read, and probably print out, David WHeldoni's protocol, which outlines the vitaminsi and supplementsi needed, the antibioticsi and dosages needed and the rationale for each. There's no point in our trying to give it to you in bits and pieces here, as it would be too confusing. Hopefully, the link will appear here: http://www.davidwheldon.co.uk/ms-treatment.html<

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 got it! Thansk for

I got it! Thansk for responding so quickly. I forgot to ask if anyone else has difficulty taking antibioticsi?  They usually make me feel just a bad as the NACi.  Is this common with CP and MPi?

 

Lynn

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

Meds: NAC, Doxycyline, and Erythromycin, Methyl B-12 Injections

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

The 'difficulty' you have

The 'difficulty' you have in taking antibiotics (abxi) is probably due to bacterial die-off! That's a good indicator the antibiotics are killing cpni.

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

Lynn, Besides the NACi,

Lynn, Besides the NACi, take B12 and CoQ10. The B12 will help a lot with your energy levels and the CoQ10 will help purge some of the junk from your system. Vitamin C is also a big help. You should be trying to take all the recommended supplementsi and vitaminsi, though. They help your body better cope with the prescription part of the protocol. As far as feeling like you have flu symptoms, well, we really do call that NAC flu, so you know it's a VERY common reaction. Yes, there is hope. Lots of it. Once on abxi, I found my brain fog cleared up a lot, and very quickly, too. When your mind functions faster and with more clarity, you can chart your own course a whole lot more effectively. (Not to mention dealing with your relationship with a more reasonable viewpoint.) Is the boyfriend also doing this protocol? It would be nice if you could help each other through 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

Hi MacKintosh: I'm actually

Hi MacKintosh:

I'm actually taking the methyl B-12 injections evey 3 days. I had taken CoQ10 in the past but ran out and have not gotten any more.  If you think it really helps, I'll get some more. What is abxi?  What other supplementsi do you recommend? I'm also taking astragalus, rodiola and ginseng for energy.

So its actually so common its called the NACi flu? How about that. Thank you for sharing that with me. Yes my boyfriend is on the exact same protocol, but doesn't seem to have the same difficulty with the NAC.  He's already taking it twice a day. This surprises me b/c his EBVi titers are really high right now as well. But from what I understand, the NAC just effects everybody differently. Hopefully we can get to a place where we feel good enough to be a better support to each other instead of having conflict due to how we feel. 

Thank you for your info and I look forward to hearing the answers to my questions!

Lynn

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

Meds: Amino Acids, Doxycyline, and Erythromycin 

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