Lyme?

[paquito]

Hi,

I am male, 43, living in Edinburgh UK. 1 week before Christmas my dog killed a fox in a park. 1 week later (on the 25th) I discovered about 200 ticks on him. They were already engorged and about 4-5mm long. I have removed them all using the special tick removal tool. I am not sure I have always turned them anti-clockwise, but they all came out with the head attached. I'm aware that there might have been bits of the mouth left in the skin.

1-2 days after the removal of the ticks, my dog developed skin bumps at the location of most tick bites and for a few days after he seemed to have great difficulties walking. This has disappeared after 3-4 days. On the first days of the new year I took him to the vet who started the 1 month antibiotic therapy. He seems to be fine now, the bumps are slowly disappearing and no issues on his legs.

The real reason why I am writing you is because I have also found 2 ticks on my arms on Christmas day which I have also removed. One of them in particular has generated an increasingly big, painful and itchy red rush which has reached about 5cm diameter in the next 6-8 days following removal. It was evenly red, it did not have a 'donut' shape, it was more like a whole disc. Eventually it faded away but sometimes it is still itchy. I am aware it might be the sign of some serious infection transmitted by the tick. In the following days I felt particularly lethargic, fatigued, I had an unusually strong back pain and stiff neck and a very loud tinnitus. I am still feeling quite run down, kind of restless, but I’m not sure whether this might be the effect of the antibiotics or possible lyme.

I went to the GP and she started me on antibiotic therapy on the 23rd of January. The GP suggested 14 days on 200mg Doxycycline but reading around I decided to go on 300mg/day for an additional 4 weeks. So by the 6th of March I will have done 2 weeks on 200mg/day and 4 weeks on 300mg/day divided in 2 doses. I seem to tolerate well the therapy especially after introducing some probiotics which I am taking as far away as possible from the antibiotics dose.

She run an antibodies test which came back negative (I'm aware of false negative).

At the moment I am still following this course of antibiotics and I am not noticing any particular change or manifestation (skin rushes or other). I know the 4th week is crucial to see if symptoms worsen. This will be around the 20th of February.

I've now ordered some grape fruit seeds extract.

Right now I'm not feeling any particular symptom or change in my health. I've tinnitus for sure, more than tinnitus is like an orchestra playing in the back of my head. I feel a little strange but I'm not sure whether this is due to antibiotics or flue-like symptoms. Certainly foggy and tired, but I was feeling like this well before the ticks bite. The first week of antibiotics I had a burning feeling in some parts of my skin which went away when I've introduced probiotics which I'm taking 6 hours apart from abx.

Any suggestions? Am I on the right path? Are abx working? What should I do once the antibiotics are finished? Should I feel better? Continue?

Another thing is that I was suffering from fatigue and general feeling crap since before, 10-12 years back. Pyroluria, Candida and MTHFR mutations where my findings. The more I read about lyme and the more I'm starting to suspect I might have it since long ago.

Thanks a lot
P

 

[Thinktank]

Try to find and consult a LLMD in your area as soon as possible and have some other tests done besides the standard Elisa IgG / IgM + western blot.
Ticks also carry many other pathogens besides borrelia. Don't wait until it's too late.

 

[Martial]

Get an herbal combo of samento and banderol and use it for at least six months to a year starting now.. You won't have severe herxes like people in more late or chronic states of infection so this is actually a great spot to be in.

There is no real adverse risks with them either, they work as natural anti viral, anti bacterial, and anti parasitic.

Samento and banderol will help penetrate bio films and reach the bacteria in places normal abx can't. They also treat co infections..

You already mentioned grape fruit seed extract, that definitely helps as well!

 

[brenda]

@paquito

Your symptoms are almost certainly Lyme plus co-infections and the regime you are on is probably not enough and you will require a longer period of treatment. More expert advice can be found on lymenet.flash. You will probably have to buy the extra antibx yourself because even if you saw an LLMD you would have to wait for an appointment and time is of the escence. You have a good chance if the treatment at this stage is done properly. Did you keep the ticks? You can have them tested at a lab. Don't mess with this. Biofilms should not be too much of an issue yet. Kill them fast and hard with the right treatment!

You may have had ME not Lyme in the past. Treatment will show this and if it has been Lyme it will take a lot longer.

 

[paquito]

Thanks all for the precious advices.

Brenda

• How long for on abx?
• What type of abx?
• What dose?
• Any risks for health on long term high antibiotics?

I didn't keep the ticks.

Martial, I'll certainly follow your advice. Is it ok to buy Samento and Banderol as separate elements or does it need a compound? Which of these would you buy?

http://www.ebay.co.uk/sch/i.html?_t...TRC0.Xsamento&_nkw=samento&_sacat=0&_from=R40

http://www.ebay.co.uk/sch/i.html?_o...313.TR0.TRC0.XBanderol&_nkw=Banderol&_sacat=0​

What dosages? Will be ok using these 2 only for the 6 months?

I'll look for a doctor.

I'm sorry this might sound stupid to non-dog-owners, but any advice for the dog's treatment?

Thanks a lot guys.

 

[justy]

Your best bet is probably to go to see Kenny De Meirleir in Belgium for additional testing and treatment. As far as I am aware there are no Lyme Literate Doctors in the UK.

I live in Wales and every spring through summer my dog is constantly coming in with ticks, usually up to 40 at a time! I don't always take him to the vet, although the site where the ticks where always comes up very lumpy. My vet has never suggested more than one shot of antibiotics for him - she says there is NO lyme disease where we are (there a lot of bloody sheep though)

I was bitten by a horse fly a couple of months before my serious relapse 5 years ago (which also involved a bout of measles and Pneumonia) the horse fly bite came up very sore and itchy and took approx. 2 years to go down!

The more I hear about all of this the more keen I am to go to Belgium for testing. I was first ill nearly 20 years ago and had spent a lot of my (mis-spent) youth hanging around in woods and fields on the outskirts of London, sometimes sleeping out on the grass.

Good luck!
Justy.

 

[justy]

In response to the dog question - my dog seems fine. If your dog has had the antibiotics and seems well then maybe they are ok now? I think dogs have the most incredible ability to fight things off - they have much cleaner diets than us and are in a more natural state, my dog, living out in the country eats all sorts of crap and rolls around in all sorts of crap and he hardly ever gets ill!! They have very strong constitutions normally

 

[paquito]

Thank you Justy,

I'm going to find out more about Kenny De Merlier.

I've found this in the UK

http://www.hampshirehospitals.nhs.uk/our-services/a-z-consultants/d/dr-matthew-dryden.aspx

http://clinicalvirology.org/index.php/inverness (Dr Darrel O Ho-Yen seems to be an expert in lyme)​

I agree about the dog strength. He looks fine now, still on abx. I'll keep an eye on him.

cheers
P

 

[brenda]

@paquito
You will have a hard job finding a doc who will continue your antibx for over 28 days. That is all the NHS allow.

I have Lyme but missed the diag. for 8 years. At the beginning it is easily treated with antibx but as I said, it takes more than a month. I strongly advise you to go on

http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/1/30/0?

and ask the same questions as that site is devoted to Lyme and you need very expert advice as you will not see a doctor who will give adequate treatment unless you go to Belgium and I don't know how soon you will get an appointment. People there will share the advice they got from LLMD's in other countries. You will not need long term if you have been recently infected but it will be more than a month maybe 6 I don't know.

 

[paquito]

Thank you Brenda.
p

 

[maryb]

If you are doing the herbal protocol I think people are now using Burbur in addition to Samento and Banderol - KdM included - think you'll find the combo if you google Cowden protocol.

 

[Thinktank]

Like @justy mentioned your best bet is with Prof. de Meirleir in Brussels if you want to stay in Europe, but the cost of testing through REDlabs can be quite expensive and there's a long waitlist of 3 months + count 2 or more months for the results.
You could also fly over to Augsburg to see one of the LLMD's at the BCA clinic. They work with Infectolab and their Borrelia + co-infections LTT test is top-notch, they also test CD57. Another advantage of infectolab over REDlabs is the turn-around time for the results. At infectolab it takes a few weeks at max. while at REDlabs it can take a few months...
Even when all the tests come back negative it doesn't mean you don't have lyme disease or any of the co-infections, sometimes diagnosis is made by clinical evaluation only.

I'm glad to hear your dog is doing better but keep him on the abx for a while and retest later! Dunno if there's something like a veterinarian LLMD? We had to put two dogs down because they became very agressive/anxious, just totally psycho. I now realise they might have had neurolyme because they have been bitten by ticks so many times. At the time we were not aware of lyme and never been told about it by the vet. I hope your pal will recover!

 

[brenda]

from Dr Burrescano

ANTIBIOTICS
There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including
doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained,treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate.For example, doxycycline can be very effective but only if adequate blood levels are achieved either by highoral doses (300 to 600 mg daily) or by parenteral administration.
Kill kinetics indicate that a large spike in bloodand tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effectivethan any oral regimen.

PENICILLINS
are bactericidal. As would be expected in managing an infection with a gram negative organism
such as Bb, amoxicillin has been shown to be more effective than oral penicillin V.
With cell wall agents suchas the penicillins, kill kinetics indicate that sustained bactericidal levels are needed for 72 hours to be effective.Thus the goal is to try to achieve sustained blood and tissue levels.

However, since blood levels are extremelyvariable among patients,peak and trough levels should be measured (for details, refer to the antibiotic dosage table). Because of its short half-life and need for high levels, amoxicillin is usually administered along withprobenecid.

An extended release formulation of amoxicillin+clavulanate (“Augmentin XR”) may also be considered if adequate trough levels are difficult to attain.An attractive alternative is benzathine penicillin(“Bicillin-LA”-see below). This is an intramuscular depot injection, and although doses are relatively small, the sustained blood and tissue levels are what make this preparation so effective.
CEPHALOSPORINS must be of advanced generation: first generation drugs are rarelyeffective
and secondgeneration drugs are comparable to amoxicillin and doxycycline both in-vitro and in-
vivo. Third generationagents are currently the most effective of the cephalosporins because of their very low MBC's (0.06 for cefriaxone), and relatively long half-life. Cephalosporinshave been shown to be effective in penicillin andtetracycline failures. Cefuroxime axetil (Ceftin), a second generation agent, is also effective against staph andthus is useful in treating atypical erythema migrans that
may represent a mixed infection that contains some ofthe more common skin pathogens in addi
tion to Bb. Because this agent’s G.I. side effects and high cost, it isnot often used as first line drug.
As with the penicillins, try to achieve high, sustained blood and tissue levels byfrequent dosing and/or the use of probenecid. Measure peak and trough blood levels when possible.

When choosing a third generation cephalosporin, there are several points to remember: Ceftriaxone is administered twice daily (an advantage for home therapy), but has 95% biliary excretion and can crystallize in the biliary tree with resultant colic and possible cholecystitis. GI excretion results in a large impact on gut flora.Biliary and superinfection problems with ceftriaxone can be lessened if this drug is given in interrupted courses (known commonly as “pulse therapy” -refer to chapter on this on page 20, so the current recommendation is to administer it four days in a row each week. Cefotaxime, which must be given at least every eight hours or as a continuous infusion, is less convenient, but as it has only 5% biliary excretion, it never causes biliary concretions, and may have less impact on gut flora.

ERYTHROMYCIN
has been shown to be almost ineffective as monotherapy. The azalide azithromycinis
somewhat more effective but only minimally so when given orally. As an IV drug, much better results are seen. Clarithromycin is more effective as an oral agent than azithromycin, but
can be difficult to tolerate due to itstendency to promote yeast overgrowth, bad aftertaste, and poor GI tolerance at the high doses needed. These problems are much less severe with the ketolide
telithromycin, which is generally well tolerated.

Erythromycins (and the advanced generation derivatives mentioned above)have impressively low MBCs and they do concentrate in tissues and penetrate cells, so they theoretically should be ideal agents. So why is it that erythromycin ineffective,and why have initial clinical results with azithromycin (and to a lesser degree, clarithromycin) have been disappointing? It has been suggested that when Bb is within a cell, it is held within a vacuole and bathed in fluid of low pH, and this acidity may inactivate azithromycin and clarithromycin.

Therefore, they are administered concurrently with hydroxychloroquine or amantadine, which raise vacuolar pH, This watermark does not appear in the registered version

http://www.clicktoconvert.com

MANAGING LYME DISEASE, 16h edition,October, 2008 Page 15 of37 rendering these antibiotics more effective. It is not known whether this same technique will make erythromycin a more effective antibiotic in LB. Another alternative is to administer azithromycin parenterally. Results are
excellent, but expect to see abrupt Jarisch-Herxheimer reactions.

Telithromycin, on the other hand, is stable in the intracellular acid environment, which may be why this is currently by far the most effective drug of this class , and may replace the others in the majority of patients with LB . Likewise, there is no need to co-administer amantadine or hydroxychloroquine. This antibiotic has other advantages-it has been engineered to prevent drug resistance, has almost no negative impact on E. coli in the intestinal tract(hopefully minimizing the risk for diarrhea), and it can be taken with or without food.

 

[paquito]

So it seems like a good idea to take the Cowden protocol after I've finished the antibiotics, or shall I start it while I'm still on antibiotics?

I've some extra abx I've managed to buy online. I'll take them all keeping 300mg/day. What you think?

Is the Cowden protocol the best thing out there?

Would it be wise to to the Cowden protocol and then if I get worse see the doctor in Belgium?

Remember, I don't have severe signs of lyme yet, the tick bite and skin reaction was 6 weeks ago, but I suspect I caught lyme and possibly I had some infection from before.

Thanks a lot
P

 

[Hanna]

I am relatively new to the Lyme world (not the ME/CFS - 16 years), and may follow the naturopathic route.
It seems that the most discussed protocols for Lyme are Cowden, Buhner and Klinghardt. As someone some insight about which one would be more suitable/ efficient ? Pros/Cons would be appreciated.

 

[paquito]

I like the way Cowden is well organised and easy to follow. But yes, some advise on which to follow would be great.

 

[brenda]

@Hanna

For a newly aquired infection, antibx are the way to go. They do the job quickly. Later on however, it is complicated. There are varying reports about the protocols you mentioned. The herbs are expensive and some develop allergies.

The most important thing in late stage Lyme is to reduce toxins in the environment and diet and build up the body and detoxification routes so that herxing will not be unbearable. It is not an easy thing to eradicate. Klinghardt has some very good tips available online but is extremely expensive to see. You also have to wait forever. I am now working on my gut and getting back to rifing.

 

[Hanna]

It seems that the Lyme is linked to the time I was living in France, so about 20 years ago. Too late for antibx?

I have some problems to understand the Klinghardt protocols, as there are some variations. According to the sources I read (perhaps not reliale ones), sometimes he advises taking ozonated essential oils (rizols), sometimes not. The whole thing (despite very precise) is overwhelming, and on the top of that, I have my problems of understanding the language...So I would be so grateful to follow some good protocol for dummies (is this the correct word?).

I am also investigating for quantum therapy (like Rife etc), using a rented MD Wave device, a local firm, for three weeks now. I feel there is some good shift occurring with the device, as I have been able to do some more Qi-Gong exercices (I could barely stand more than 10 mns in a row last month, and increased to 20 mns now without much PEM). So I think it is worth experimenting it more extensively and perhaps buy a machine (no Rife seller here )

 

[brenda]

@Hanna

I have had it about 14 years. Dr K makes changes every year to his protocol and someone said that it seems to be connected to which supplements he is selling.

I am thinking now that dealing with the gut is vitally important. That's great that you have been having success!

Varied opinions regarding antbx at late stage. Read lymenet.

 

[Sushi]

@paquito

Ticks also carry co-infections. Sometimes they don't "show up" at first with testing, but then do show up after a month or so of antibiotic treatment. You might want to test for these also. I have just been diagnosed with Bartonella, so this is on my mind. I will be taking abx.

A couple of people mentioned taking grapefruit seed extract. You might want to do a google search before trying it. I used to take it and found it helpful for many conditions but then read that it is the solvent or preservative used in extracting the grapefruit seed extract that was having the effect--not the grapefruit seed extract itself. There are quite a few studies on this available.

Since the solvent involved can be quite toxic, that was the end of my use of grapefruit seed extract!

Sushi