C.pneumonia, CD57 count, lyme and antibiotics

[Ahopeful]

Hello again folks,

You can tell my symptoms have flared up lately. I have rarely been so active one here since signing up over a year ago.

I just found this page which I find extremely interesting. See what you think, if you have time to read it. It makes a lot of sense to me.

MorgellonsTreatmentStepsWebsite (in Treatment) - MorgellonsWiki.info

Why am I so interested? Well I have had some tests which show a reduced CD57 count (79 not as low as the writer 30) and likewise indicating C. pneumoniae. (For which I must thank Jo last year for sorting out).

B.burgd. was tested for but not conclusive.

Oh, and needless to say I have morg type symptoms, though no obvious lesions - though like the author chronic folliculitis, oedema and red spots mentioned.

I know there is a lot of negativity about antibiotics out there - especially stating that they are not effective. Perhaps the right ones need to be used.
I also hear a lot of people have benefits with NAC.

I think I might try and go down this route, and wanted to hear if anyone here has experience. Please don't reply by shooting down antibiotic therapy, or by going off topic, i'm hoping to hear from people who have followed similar treatments paths or who have had similar test results. Thanks

[MeaganM]

I have been going down a similar path by seeing a doctor who believes it's a blood parasite and has put me on low dose antibiotics. I have been taking it for about 2 months now and have had different experiences with it. I am defiantly getting some kind of reaction to it but I'm not sure if it's positive or negative. I would imagine that if I was getting no reaction, then it wouldn't be working. My problem is that whatever it's killing is dieing off too quickly and making me sicker so I have to take low doses and some days are really bad. I think that I've gotten to the point that I feel worse right before I'm supposed to take it again and if I had the nerve, I would just start taking the whole dose and deal with the die-off and get it over with. I would probably do that if it wasn't affecting my throat and swallowing but it does. I believe the die-off is prominent in this area and not very pleasant. I am having an endoscope on Tuesday and will know for sure if it's something else or if it is the antibiotic attacking something in my esophagus. I have read many people who have tried antibiotics and their symptoms got better. My philosophy is that I have nothing else to lose by trying it and I'm hoping that it will start to reduce the symptoms soon.

[JimDoe]

Originally Posted by Ahopeful

Hello again folks,

You can tell my symptoms have flared up lately. I have rarely been so active one here since signing up over a year ago.

I just found this page which I find extremely interesting. See what you think, if you have time to read it. It makes a lot of sense to me.

MorgellonsTreatmentStepsWebsite (in Treatment) - MorgellonsWiki.info

Why am I so interested? Well I have had some tests which show a reduced CD57 count (79 not as low as the writer 30) and likewise indicating C. pneumoniae. (For which I must thank Jo last year for sorting out).

B.burgd. was tested for but not conclusive.

Oh, and needless to say I have morg type symptoms, though no obvious lesions - though like the author chronic folliculitis, oedema and red spots mentioned.

I know there is a lot of negativity about antibiotics out there - especially stating that they are not effective. Perhaps the right ones need to be used.
I also hear a lot of people have benefits with NAC.

I think I might try and go down this route, and wanted to hear if anyone here has experience. Please don't reply by shooting down antibiotic therapy, or by going off topic, i'm hoping to hear from people who have followed similar treatments paths or who have had similar test results. Thanks

Lots of disclaimers so they won,t get sued out at least a feeling of it included. No mattter how good the claimer is. Junk science. What is a right antibiotioc?

[JimDoe]

I,ve nerver had an organic even sandwich in my life.Yet I feel good!

[JimDoe]

I may not sound true

[Ahopeful]

Jim can we stay on topic perhaps? I'm not talking about organic food here. I'm talking about people who have had reduced cd57 counts and c.pneumonia..

I'm hoping to hear from people who have followed similar treatments paths or who have had similar test results.

[Jo]

Originally Posted by Ahopeful

Hello again folks,

You can tell my symptoms have flared up lately. I have rarely been so active one here since signing up over a year ago.

I just found this page which I find extremely interesting. See what you think, if you have time to read it. It makes a lot of sense to me.

MorgellonsTreatmentStepsWebsite (in Treatment) - MorgellonsWiki.info

Why am I so interested? Well I have had some tests which show a reduced CD57 count (79 not as low as the writer 30) and likewise indicating C. pneumoniae. (For which I must thank Jo last year for sorting out).

B.burgd. was tested for but not conclusive.

Oh, and needless to say I have morg type symptoms, though no obvious lesions - though like the author chronic folliculitis, oedema and red spots mentioned.

I know there is a lot of negativity about antibiotics out there - especially stating that they are not effective. Perhaps the right ones need to be used.
I also hear a lot of people have benefits with NAC.

I think I might try and go down this route, and wanted to hear if anyone here has experience. Please don't reply by shooting down antibiotic therapy, or by going off topic, i'm hoping to hear from people who have followed similar treatments paths or who have had similar test results. Thanks

Hi Ahopeful,
The post in your link above on wiki, was written by Bubba, a lady that used to moderate MDR. In 2007 she took down her info and left - other's may know why, and whether she's still asymptomatic. Looking at Savely's a/bs protocol, minimum is a year and max 5 years.

I only took them for 3 months, because that was the protocol at the time.

Jo

[tcmgpt13]

Hi Meagan, This is a bit off topic here, but I think it could benefit anyone who is experiencing toxic reactions to various treatments by removing some of the toxicity from the body a bit more quickly than perhaps your body can efficiently handle on its own. Of course if on antibiotics I believe this sort of approach would have to be discussed first with the treating doctor to make sure it would not mess up the antibiotic treatments. It would help if you can find an integrative doctor who is familiar with more alternative treatments. Anyway, here are suggestions from that site applicable to lyme but probably just as effective for some of our treatment symptoms, especially as many with M also do have chronic lyme infections:

Detoxification of the toxins produced by lyme infection

This is the arm of treatment that is as important as the antimicrobial arm. The majority of the symptoms of chronic lyme come from the accumulation of toxins that are produced by the germ. This is from my own experience, as well of that of many other clinicians, that finds that patients get better when a focus on detoxification is made. If the underlying infection is not treated, and the immune dysregulation not treated, then patients can relapse of course, as the toxin burden starts to creep up again. It is a catch 22 situation though, as the toxins do need to be dealt with otherwise it is also hard for the patient to clear the infection.

The main treatments here involve sauna therapy with oxygen, IV vitamin C, IV glutathione for flares, DMSA and EDTA chelation, and oral chlorella, cilantro, garlic.

Sauna with oxygen therapy is a spin off from exercise with oxygen therapy. Older studies in Germany have repeatedly shown that exercise with oxygen supplementation vastly improves nutrient delivery to the tissues by decreasing the space that the nutrients have to diffuse through to get to the tissue. The blood carries oxygen and nutrients through blood vessels, which branch off into tiny branches called capillaries. At the capillaries the nutrients are unloaded, but then must diffuse across the extracellular matrix before they get to the cells. Exercise with oxygen therapy decreases the swelling in the matrix (most likely by helping to remove toxins from this space).

IV vitamin C is then given immediately after the sauna, in doses ranging from 25 to 100 g. Vitamin C directly neutralizes the liberated toxins, and in high enough doses has an antimicrobial effect as well. (Note at this point autohemotherapy is done also as part of the immune modulation.) IV glutathione can be done if a chronic lyme patient is in the process of a flare, as glutathione is the intracellular antioxidant that the cell uses to detoxify. I have found that IV glutathione does not need to be a frequent treatment, and most patients do well with the vitamin C alone.

The combination of the IV vitamin C, and sauna, is done twice a week.

DMSA and EDTA chelation are given to reduce heavy metal burden. While these are heavy metal chelators, in my naturopathic clinical practice I frequently find that when a patient has their heavy metal burden lowered, they are much better equipped and able to lower the toxins produced by chronic lyme infection as well. The EDTA is added to the vitamin C IV bag, and the DMSA is given orally.

Chlorella, cilantro, and garlic are synergistic with the detoxification program. Garlic is rich in the sulfur compounds that the body uses for detoxification, and chlorella and cilantro have specific compounds that directly bind toxins for excretion.

Emotional toxins and other psychological issues can be roadblocks to healing as well. If this is the case, I refer out for EMDR and cognitive behavioral therapy. From: pannaturopathic on the chronic lyme treatment page

[Ahopeful]

Thanks Jo. Do you happen to have the Savely protocol or can you link me. I didn't see it on the site.. or perhaps it is in one of her papers.

And thanks MeaganM too for your response. What antibiotic and what doses if I may ask?

Again, I'm really interested in antibiotics or those with similar test results here. Perhaps Bubba left because the threads kept going off topic...

Originally Posted by JimDoe

What is a right antibiotioc?

Exactly what I'm trying to establish

[skylark99]

On the topic of antibiotics, I have been using homeopathy for about 30 years.
That worked for me until Morgellons.
Because homeopathy stimulates the immune system to do its job, I suspect that something is now not right with my immune system.
Before learning about homeopathy, I did use many antibiotics. They always worked, and not always was thrush a consequence.

Since Morgellons, I have tried 8 months of doxycycline. The first two weeks of that course I had great improvement, then my symptoms returned and leveled off at just 'orrible (as opposed to nightmarish).
After the course of doxy, all the symptoms returned to just a notch below their worst.

Four months after the doxy ended, I did 3 months of supplements:
NAC
Solgar V Formula 2000
pre-biotics
MSM (the sulfur)
The improvement was very transitory.
It wasn't doing much but thinning my wallet, so stopped.

I think that antibiotics have a serious place in medicine, and suspect that they also have a weighty contribution to make to Morgellons.
The issue always is what to chose. And that sometimes cannot be done without testing for various pathogens.

The protocol you linked, sounds realistic and reasonable, and seems to be backed by some science. What is lacking in Bubba's protocol is some data replicating her results. But she does not say in this article that she remained symptom free for any length of time.

The lack of replication in a great number of patients using Bubba's protocol, is a good case for trial-ing this with many more Morgellons patients.
But since these are Rx meds, obtaining them without a doctor is impossible.

Too, when the immune system is dysfunctional, taking un-needed medication can often compound underlying issues that lead to immune system dysfunction (as in the case of methylation problems, toxicity etc).
One stumbling block is testing for various infections and getting blood panels done, so that a clear idea of the problem is seen, and the appropriate and needed medication is used.

So many of us are getting fobbed off and shunted toward the shrinks, so testing for the vast majority does not seem possible or practical.

I note that you are in the UK. Since no doctor in the nhs is helping M patients, I am wondering how you got your CD57 test done?
And if you will look to other tests to see if this protocol is right for you?

Thanks for posting this link. Interesting.

On another note, I am now using Vitamin C. An experiment.
7 days later, I have very few symptoms.
On days 5 and 6 I slacked off and started to have a lot of frass again.
Got back on a schedule of taking it more often, and am about 80% free of the frass, most of the time. The frass and itchiness begins to return 5 or 6 hours after the last dose.
I am taking it as my body says that it needs to (eg, a return of the frass coming out of the skin). I use time -release Vit C, 500 mg. Swallow one and use one at the same time as a lozenge. Do this 3 0r 4 times a day, and always just before sleep to hold me over night.
I also note that since beginning this 8 days ago that the frass does not seem to embed so easily into the skin it lands on. It also seems "weaker" in that it is easier to remove and does not seem to move along the skin as quickly. Some of it is much more dessicated upon a few seconds of air exposure; it is usually quite gleatinous, but is less so now.
Curiously, I have only seen one singe black speck during this week of Vit C.
That was on day 6 when I had sacked off two days in a row. Now that I have been back on it two days, I seen no black specks again. Yet.
I wonder if this observed reduction in symptoms is due to the Vit C having some impact on my immune system.
I also wonder if taking a lot of antibiotics when one's immune system is not functioning poroperly is a good idea.

So, I would say that usong Bubba's protocol would best be done by getting the tests done, selecting PRN antibiotics, and providing immune system support.