posted
I live in the UK, think I possibly have Lyme Disease and haven�t been able to find much help. I became ill 3 years ago after visiting Ghana and haven�t recovered since (not sure if I got a tick bite but was waking a lot through long grass). My Dr diagnosed me eventually with fibromyalgia but I�ve always wondered why my illness started so suddenly in Ghana. I first read about LD on this site and all the symptoms seem to fit with mine. I managed to find a private dr to see about LD as my dr wasn�t interested in even discussing it. The private dr thought I could have LD (I didn�t have a blood test as it would have to be done in the US and cost �300 which I couldn�t afford. He gave me doxycycline for 6 months and then told me to stop taking it as I hadn�t got LD because if I had I would be totally recovered by then. While taking the antibiotics the pain got very much better but I didn�t have much improvement with the exhaustion. Since stopping the antibiotic (2 months ago) I�ve been exhausted most of the time with really bad pain pretty much all over my body. I�m now thinking of buying the doxycycline online and self medicating. I�d be really grateful for any advice people on this site can give me as this is a very little known disease in the UK.
Posts: 4 | From UK | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
maud, doxy alone will not cure you.
My best advice is to read the Burrascano Guidelines found here:
Lyme is an extremely complex disease. Even the doctors who specialize in it in the U.S. can have a difficult time getting rid of it for a person.
Once you study the Burrascano Guidelines, you will understand why. Also, most people get not only lyme but also babesiosis, bartonella, and perhaps ehrlichia from the one tick bite. Each disease is treated with different meds.
So, you can decide by reading the symptoms if it sounds like you have these other coinfections also, or you can decide you want to have your blood tested for these infections through Igenex in California. (igenex.com) That may be the lab you were referring to. It is expensive.
You will need a doctor to sign an order for the tests. Igenex will send you the kit for free. You may want to call them about shipping blood from the UK. The blood has to get to them quickly so that it doesn't clump. Clumping will make your tests come back negative, even though you have the diseases. So, be sure it can be done from the UK.
The other approach is to check the symptoms for each disease in Burrascano and, if you have the symptoms, assume you have the disease. However, many don't have any clear symptoms of these other diseases, but they still have them as shown by Igenex blood tests. This happens a lot, so it is not a great way to get diagnosed.
Finally, you can just decide to treat for lyme, babesiosis, and bartonella as they are the most common diseases we all have. Some lyme doctors in the U.S. take that approach.
Your chances of getting well self treating are slim since it takes doctors in the US about 10 years of specializing in lyme to have a good success record with this disease. It is such a complex disease, and the treatment is complex also.
The Burrascano protocol is a 4-pronged approach:
antibiotics (high-dose in combinations; not just one at a time) supplements diet exercise (1 hour of weight lifting every other day)
All 4 prongs are essential. The exercise requirement is essential to boost your immune system so that you can control the disease. So, don't ignore it.
I had undiagnosed lyme, babs, and bart for at least 10 years before a doctor figured out what I had. I treated this disease for about 3 years, going to progressively better doctors.
I completed my treatment 6 1/2 years ago, and I am still symptom free, enjoying my life. I have a number of friends who can say the same thing. We all went to doctors who followed Burrascano.
The doc is the key to getting rid of this disease. I can't emphasize that enough. At least learn all you can and try to follow the Burrascano Guidelines until you can make a way to see a good lyme doctor.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I've read the guidelines you suggested and as much else as I can find on lyme; problem is everyone seems to say something different which is very confusing for someone new to all this.
The LLMD I saw did tell me about other co-infections I may have but said the doxy would treat these also.
Would it be usual for a LLMD to prescribe different antibiotics for different co-infections?
I've also just read about changing antibiotics on a regular basis so that the bacteria don't become resistant to them. Is this a good thing to do?
It would be really helpful to know what a 'normal' treatment regime is like (if there's any such thing). I'm not thinking about copying it but could use it to help decide if I felt my treatment was adequate.
I did think I was improving so not sure why was told to stop antibiotics after 6 months as I thought treatment could last longer than that.
I'm now feeling absolutely terrible, not sure if the pain is worse than before or if I'd just forgotten how bad it was.
My problem in getting treatment is I live in a really remote area of the UK, I'm 63 and have custody of my 6 year old grandson who has ADHD so that limits how far I can travel.
The nearest LLMD is the one I saw and he is 4 hours drive away. He was mentioned on a UK Lyme site as a good LLMD. The next nearest is 8 hours away and a lot more expensive from what I can understand.
I think I should for now go back to the LLMD I've already seen and find out what his ideas for future treatment are, if any. Perhaps now I've had this bad reaction to stopping the doxy he will see that it was doing something.
I'm not at all sure I want to get the blood tests done and can't really afford to. I feel the money would be better spent on other treatment
The test done in the UK is apparently a waste of time and from what I can understand even the US ones are not very accurate so if I get a negative result it wouldn't prove that I haven't got lyme.
Thank you again and I will keep posting about my progress (or lack of it)
Posts: 4 | From UK | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
maud, yes a doctor who really understands lyme would give you different medications for the various coinfections. No good lyme doctor would give a patient just doxy and say they were done unless the person was just bitten within the last week or so.
Here is a typical Burrascano type treatment:
First, at least 30 days of doxy to attack ehrlichia and also lyme.
Then, treat lyme with any of the meds burrascano recommends. For example, high dose amoxicillin with probinecid. Then, after a while, add flagyl to hit the cyst form of lyme. You always have to treat lyme with at least 2 antibiotics. That is because lyme can easily evade just one antibiotic by changing forms. You will see that in the Guidelines.
When you hit it with 2 meds that each go after a different form of lyme, you can have success. You must use a med that kills the cyst form of lyme.
Amoxi with flagyl is how I got rid of lyme.
Then, my doc continued just the flagyl and added levaquin. The levaquin treats bartonella.
Finally, to go after babesiosis, Burrascano recommends mepron with azithromycin. You add in artimesinin after about 1 month. You may have to treat babesiosis for at least a year to get rid of it. It takes a lot of time.
If you have babs, once you start treating it, you will generally know it because treatment will bring out symptoms.
A Burrascano type doctor will treat you for at least 2 months past your symptom-free point. And, if it is winter or near winter when you become symptom-free, you must stay on meds until spring. I had to do that.
During the entire time, you must take probiotics (refrigerated ones from a health food store) and the Burrascano required supplements. As soon as possible, begin trying to do the weight lifting routine.
The anti-yeast diet is necessary or the high dose antibiotics are going to give you yeast in your mouth and intestines, etc. Yeast symptoms make you feel as sick as lyme does.
So, if your current doctor does not treat you somewhat as outlined above, you will have to try the other doctor to start improving.
I had a total of 3 lyme doctors. The second one did not believe in treating coinfections as he considered them rare. So, I wasted 2 years with him. I improved with him, but only to a point. And, as soon as I stopped meds, I always went right back into the pit within 2 weeks. No permanent improvement if you don't treat the coinfections. They help each other stay in your body, so you really can't get rid of lyme if you ignore the cos.
So, I suggest you have a discussion with the current doctor and tell him you would like to try further treatment including treatment for cos. His response will determine whether or not you have to change doctors.
Many doctors are afraid to treat people for lyme with high dose combinations of antibiotics, and they are often afraid to treat for as long as it takes to get a person well. So, if he is afraid, he will not agree to Burrascano type treatment. Then, you will just have to move on. You can't talk a doctor into treating you if he fears that his medical career could be at stake for helping you. Don't expect the doc to come out and tell you that. You have to figure it out yourself.
Keep looking until you find someone who will give you good treatment. I wish you the best. Let us know how we can help you further.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Since you live in the UK and got sick after traveling to Ghana, I would highly recommend you see a specialist in tropical/travel medicine.
Have you considered going to the "Hospital for Tropical Diseases" in London? The specialists here are supposed to be great. They would be aware of whatever you might have been exposed to in Ghana and could test you properly. Your local GP probably has no idea what kind of tests to run.
I'm not saying you don't have Lyme. I just want to make sure that you are tested and treated properly to find out exactly what is making you sick so that you can get better.
Posts: 5237 | From here | Registered: Nov 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You should really look into the possibility that you picked up some parasites in your journey.
Google parasite symptoms and you will see that they are very similar to Lyme disease. Do research on parasites and visit the curezone site.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Thank you, I think the idea of tropical medicine hospital is a good one, however unfortunately because I live in Wales not England I can't get referred to an English hospital (different health system).
I�m seeing my GP next week and will ask her about it and which one I can go to.
I had all sorts of tests done in Ghana where I was in hospital, a good private hospital, and have also had loads here but I agree it might be worth following up.
I previously lived in Africa for a long time and thought I'd pretty much had everything there was to catch there.
Around 30 years ago I was treated in Malawi with Flagyl for giardia and had Tick Fever which I guess is some sort of tick bacterial illness in Zimbabwe around 15 years ago which was treated promptly with tetracycline and got better in a few days.
I�ve never had anything like this before which went on for so long.
My main symptoms are bad migraine like headache, neckache, sore soles of the feet which make walking difficult, backache � in fact pain all over my body, very disturbed sleep, ringing in my ears, vertigo, burning feeling in my skin, nausea, pins and needles and extreme exhaustion.
The symptoms fluctuate so sometimes I feel reasonably well, other times totally knocked out.
When I was taking the antibiotics I got a rash which is like dark red, small raised pimples on my body which I still have now, spider veins on my face which I also still have and swollen lymph nodes in my neck.
Sorry for another long post, It�s so good to talk about this at last so you must forgive me.
Posts: 4 | From UK | Registered: Nov 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
A symptom classic of bartonella infection is sore feet. It can also cause swollen lymph nodes and spider veins and trouble sleeping. Bartonella is treated with Rifampin (and a macrolide) , Levaquin or Bactrim .
Babesia causes extreme fatibue and pain/cramping in the large muscles of the buttocks and thighs etc. You often have hot flashes with sweating and headaches. Vertigo is very common with babesia. Babesia is a malarial like disease that infects the red blood cells. You need antimalarial drugs to treat it, like Malarone, Mepron and Coartem.
Doxy will somewhat address all of the infections if you catch them early on. Doxy used to be used to prevent getting malaria. But babesia is actually harder to get rid of than malaria.
As you treat one infection and it begins to go dormant, another infection will emerge and take over. You have to be very aware of changes in symptoms and adjust your treatment.
When borellia is in the forefront, you will flare about every 28 days. When the co-infections become dominate it is harder to figure out because they cycle more frequently.
I hope you can find someone that knows how to treat you. It doesn't sound like your current doctor knows enough.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, you certainly have named a number of bartonella or bartonella-like symptoms. The sore soles is a classic bart (or BLO) symptom and basically gives you the diagnosis right there! From page 24 of Burrascano:
"Indicators of BLO infection include CNS symptoms out of proportion to the other systemic symptoms of chronic Lyme. There seems to be an increased irritability to the CNS, with agitation, anxiety, insomnia, and even seizures, in addition to other unusually strong symptoms of encephalitis, such as cognitive deficits and confusion. Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis), sore soles especially in the AM, tender subcutaneous nodules along the extremities, and red rashes. These rashes may have the appearance of red streaks like stretch marks that do not follow skin planes, spider veins, or red papular eruptions. Lymph nodes may be enlarged and the throat can be sore."
You certainly have named a lot of lyme and coinfection symptoms.
I had nausea 24/7 for the last 3 months before I started lyme treatment. And, I had daily headaches, neckaches, burning patches of skin that moved around, pins and needles torturing me, plus very disturbed sleep to the point of no sleep.
So, I can see that lyme and company fit your symptoms very well.
Why not look at the symptoms Burrascano lists for each of the coinfections. Then, make a list of the ones you have under each coinfection. Then, list the meds that Burrascano says work on that infection. Then, mark those sentences and take the pages to your doctor, asking for the appropriate treatment. He may be willing to just follow the Guidelines for a while to see if you improve.
And, the classic lyme symptom is the fluctuating nature of it, or the "waxing and waning" as Burrascano calls it. From page 7:
"Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy."
My lyme doctor told me that babesiosis has a 7-day cycle and a 14-day cycle. I experienced both. Burrascano says that babs cycles rapidly over a matter of days.
So, all of this put together is why you can feel so horrible and then have a few reasonably good days. That's the way it is with lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Maud, I just wanted to tell you "Maud" was my mom's name!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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