Is there an overlap between CPN protocol and lyme disease

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zjac020
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Is there an overlap between CPN protocol and lyme disease

Post by zjac020 »

Hi all

I carried out a lyme panel test and unfortunately its not all clearly negative. Im wondering how many here have had the private (and rather expensive) lyme tests done? Im pretty sure that the ABX used for lyme patients (although its not just a case of treating with Antibiotics) have some in common with the onces ive read in the Weldon protocol. Is that so?

Thanks all,
zjac
Ulappa
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by Ulappa »

Hi,

In 2012, I had Borrelia burgdorferi antibodies (ELISA), Immunoblot test and Elispot LTT tests done, of which all three were positive. At the same time I was also found to carry mycoplasma pneumoniae and ehrlichia. Interestingly chlamydia pneumoniae antibodies were negative, but turned to positive after Borrelia was defeated after 1,5 years of antibiotics. Some Lyme patients test negative for Borrelia initially, but positive after having started to take either antibiotics or herbal medications. And remember that there is not a 100% liable test for Lyme. ELISA was developed for statistical, not diagnostic, purposes in 1990s and tests only one or two Borrelia species out of around ten that cause disease. So, even slightly positive is still positive, not some immunity from earlier infection.
My antibiotic regimen for those three infections was similar to Wheldon's protocol: minocycline, azythromycin and rifampicin. The combination depends on a Lyme doctor, some describe pulsing with metronidazole. I changed to doxy, rifampicin and tinidatzole after 10 months, and that did accelerate improvements. After all, we are talking about several intracellular bacteria, and it seems similar combinations work.
After about two years of antibiotics I could see improvements in cognitive functions. But fatigue, chills, sweats, air hunger remained, typical for babesia, a protozoa. For that malaria medication has helped. It incidentally has also improved bladder function and stamina. Some problems still remain, mainly mobility.
zjac020
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by zjac020 »

The only lyme literate (illads) doctor in this country who I was previously working with did not want to treat me with antibiotics or herbals (he did includr supplements and some but no herbals as such).

He insisted on treating my intestinal candida, heavy metals, and ozone therapy to boost my immune system and thay way try to clarify my diagnosis. Although I discontinued working with him I have arleast repeated my CD57 cell count which has increased (although the test was done at a local lab and not the german lab that ran the inital lyme and co infections test).

When I askes this doctor what the protocol would be if a clear positive was obtained (and I specifically mentioned antibiotics) he said that we would continue with the same treatment he was suggesting to obtain a clear diagnosis, I.e. that antibiotics would still not be used.

This is all very frustrating as I really do not want to start self diagnosing long term antibiotics treatment. The fact that I am asymptomatic after my first relapse has also lead others very familiar with lyme to suggest that I probably have come into contact with lyme or co infections at some point but that it doesnt seem to be an active infection or id have more symptoms.

Maybe there are doctors who work with the herbal protocols who may offer skype consultations?
Ulappa
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by Ulappa »

In Lyme disease LDN (Low Dose Naltrexone) is sometimes used to boost the immune system. It is also used for MS, so more similar treatments. And Lyme never comes alone, there will be a plethora of other bacteria, viruses, fungi, heavy metals, allergies etc. I refer often to Dr Horowitz' book "Why Can't I Get Better?", which gives a comprehensive overview on different aspects of the disease(s). At least one doctor uses ozone therapy for Lyme patients with success (see LymeMD blog). Again, ozone therapy has been used by MS patients to increase blood flow and reduce fatigue. All in all, the therapies your doctor has prescribed are not bad for Lyme or MS.
There are several information sources for herbal protocols, e.g. Buhner, Cowden, Borreliose Centrum Augsburg (BCA), Dr Marty Ross (also webconsults I think), and Dr Zhang on Chinese herbal medication for Lyme. Increasing numbers of Lyme patients are using herbals, so there are a lot of info in different Lyme patient websites and FB.
zjac020
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by zjac020 »

Problem wase doctor wasnt the treatment plan as such, it was the treatment cost. 10 weeks treatment JUST to clarify the diagnosis was 7.800€, excluding the cost of supplements from a local supplier rather (rather than purchasing reputable brands from cheaper online stores) which was abouy another 450€ per month. This in a country were the average monthly salary is probably just iver 1000€ a month. When I then asked what we would do if the subsequent tests came back with a clear positive diagnosis. ..he said thst in that case we would just continue with the treatment. lets face it...who wouldn't benefit from heavy metal chelation, improved diet, improved intestinal flora and ozone therapy? everybody would. how is that targeting lyme specifically? I know it is ultimately about strengthening the immune system so that the body can keep lyme under control...but I wanted additional things added in to help with the lyme...such as antibiotics, herbals, etc.
MacKintosh
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by MacKintosh »

zjac, Where do you live (country)?
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
zjac020
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by zjac020 »

Spain, madrid.
Ulappa
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by Ulappa »

The cost of that proposed treatment is a rip-off. Maybe you could find another doctor, for antibiotics only. But luckily you live in Europe and could benefit from the EU directives on cross-border healthcare (2011/24/EU), or regulation 883/2004 and 987/2009 on social security systems. I was reimbursed some of my Lyme & Co medical costs abroad by my social security, which was a fight, but without that decision I would have been in trouble. Ask how Spain's social security is reimbursing the costs abroad, also on so-called rare diseases (Lyme disease, borreliosis, is classified as a rare disease by Orpha.net).
zjac020
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by zjac020 »

yes but Spain social security use the very basic blood tests for lyme...which in my case are negative. A country cutting social expenditure as muvh as Spain will definitely go down that root to avoid paying.

im trying to find a dr in germany that might be able to help...but its easier said than done.
Ulappa
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by Ulappa »

Because Lyme tests are not 100% reliable anyway, a clinical assessment has to be made by a Lyme specialized doctor, with or without the blood tests. My first diagnosis was actually without blood tests, based on symptoms only. Maybe there is a Lyme patients' group in Spain, where you could be given advice on where to find Lyme literate doctors in Spain.
zjac020
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by zjac020 »

There is a very basic lyme group but as i ssid there is only one illads certified doctor in the whole of spain. based on symptoms i dont think i can be diagnosed as having lyme. I had the first and only relapse last year which resulted in weakness on right hand side of body with right drop foot. i recovered after 10-14 days and symptoms only exacerbate and return under fatigue from intensive exercise, heat from saunas or heat from a long soak in a hot bath. i also have more crepitus since the relapse and slightly worse balance but really only something i notice. other than that im relatively asymptotic. that is why i believe diagnosing lyme on symptoms alone in my case isnt feasible.
supaguy
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Re: Is there an overlap between CPN protocol and lyme diseas

Post by supaguy »

Hi!

I have confirmed diagnosis of PPMS. I started doing The Wheldon Protocol nearly a year ago. Many months ago I began to wonder whether I was afflicted with Lyme too. I too wondered about some sort of "Crossover" between Lyme and MS. What is certain is that there is certainly a crossover in the treatments for the both; but they are not the same.

A little while back, I watched a YouTube video by a bint going by the name of "Lady Barbara"; she has a site called Lady Barbara's Garden. Essentially, the relevance to us is that she reckoned that she contracted Lyme's many times and cured it many times using Teasel Root Tincture. My gut feeling said that this was kosher ... so I went for it. Anyone that reckons they may have Lyme should give this a go.

G.
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