hardynaka
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posted
My LLMD thinks I only have anemia but no lyme, despite the fact that both Elisa and Western Blot exams are positive (I had 9 positive bands).
I have symptoms like arthritis, pain in the left ear (pressure), sound sensibility, had stiff neck and pain in the lower part of the vertebral column (gone with 10 days of Amoxicyclin), had wrist pains for months (gone with the same abx like 'magic'), problems to sleep, night sweats, feeling of cold the whole day, pressure in the heart, pain in the ribs.
He thinks that all these may come from anemia. I never had anemia in my life, but suddenly I discovered I ALSO have anemia now.
It's the second doctor who refuses to give me antibiotics and would like to wait and see what happens, despite having 'active lyme borreliosis' (what is written in my exams). I'm in Switzerland and that's the way they do things I suppose. Wait and see.
I wonder if lyme hasn't caused my anemia!? Has anyone got anemia because of lyme?
Thanks for any input, Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
Most people with lyme also have co-infections with it. It sounds like you have lyme and babesia. Babesia causes night sweats and anemia. Babesia is treated differently then lyme. It is treated with malaria type drugs.
Your LLMD doesn't sound like a real LLMD to me. If you can, find a real LLMD and get treated.
Babesia symptom list:
20. What signs and symptoms would lead a doctor to suspect a Babesia infection in a patient? How many strains of Babesiosis have been identified and how many are commonly tested for in commercial labs?
The following signs/symptoms may be present in those infected with Babesiosis:
Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase Anorexia
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
hardynaka
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posted
Hi Lisi, thanks for your post.
I think Babesia is thought of being very rare in Switzerland. The dr even didn't make any exam for that!
I don't have headaches, only cold/ chills/ night sweat but I think my skin is getting yellow (jaundice?).
I think that I have to see a third dr. then to ask about that. But he'll think I'm crazy for sure. What kind of exam people do for BAbesia? Another Western blot?
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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mlkeen
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My first round of bloodwork came back with a positive Elisa and anemia. Which came first I don't know.
I have been working hard to get more iron in my blood so my body can better fight lyme and co-infections. Most of my improvement has been since my iron levels have come up.
Suppliments din't do it. Apparently gluten, from wheat prooduces was causing inflammation in my digestive system prevetning absorbsion. I got rid of the wheat and the dark circles under my eyes have improved.
I feel badly for you. You have said the medical options are limited. Clearly if you felt better on abx, you need it.
hardynaka
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Hi Mel, thanks for your support. I'm sort of lost on what to do in the next steps... Maybe will call my dr. to ask for a babesia test? He may laugh about that though, because he even doesnt' "believe" I have lyme. I think he didn't really believe me all my arthritic pains were practically gone after only 10 days of abx, but now I'm getting them back.
Babesia is considered rare in Switzerland. I feel like a 'lost' fight with this dr., because even if I get a positive exam for babesia, he won't necessarily give me a treatment like it happened for lyme.
It sounds like a lost fight from the start, doesn't it?
I have to think about what to do next...
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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timaca
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I have lyme and I was iron deficient anemic. It's a drag to have both. My iron deficiency was because of my heavy menses. I ended up with a uterine ablation, and my iron levels are normalizing. It is important to check your ferritin levels, and make sure that they are above 50 ng/mL. Mine were at 5, and that was after taking 4 months of iron supplements. My doctor wants my ferritin at 100 ng/mL before I quit taking iron supplements. One can have lyme and iron deficiency.
Mel~ There is a great gluten site at www.braintalk.org Scroll down to the "gluten sensitivity/celiac" forum.
Selma~ Anemia is not likely to cause all the problems that you are having; (like joint problems). I called an iron disorders doctor before I figured out that lyme was my other issue, and he said "Iron deficiency can do a lot of strange things, but I've never heard of what's happening to you."
If your skin is getting yellow, you need to see a doctor.
Good luck....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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hardynaka
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Just to add one more thing, I can't find any other better specialist than this dr. here in Switzerland, it seems.
The only other alternative was a dr. that doesn't accept any more new patients...
I got another name of a dr. here (don't know if he's a specilist in lyme or only infectious diseases)...
but I am starting to lose hope to try to eliminate this disease at its earliest stages (I think they'll only listen to me if I get handicapped with lyme). At least here in Switzerland, I think there's a sort of lyme treatment culture which is standardized here, so no matter with whom I go, they'll just do the same (meaning wait).
I think I'll start looking for drs. in the nearby countries.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
Good timing! I just made my yearly appt for bloodwork to check my liver function and test for anemia. I had/have Lyme and babesiosis, and babesiosis is actually worse in Europe than it is in the States. From my reading, it mentions babs being fatal more often, and requiring spleenectomies (sp?) ie, removal of spleen. If you do test positive for it, I urge you to take quinine and clindamyacin - it worked well for me, esp. with the night sweats and general weirdness. My doctor also mentioned it attacks the red blood cells and urged me to keep an eye on liver and anemia because of it. Good luck! love dharma
Posts: 731 | From NH | Registered: Jan 2002
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Marnie
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Bb alone can cause anemia.
Bb is PFK dependent. PFK is an enzyme that is "rate limiting" for glycolysis (sugar for energy). When this drops -> anemia.
Into a search engine, type in "anemia PFK".
In a disease called Tauri's...the people have NO PFK and there is muscle wasting and anemia.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
My hubby has Babesia symptoms, has anemia and is getting better with Babs treatment.
I know that there is Babesia in Switzerland. One patient of Dr. M (who isn't taking any more new patients) has Babesia. Dr. M. had the test done in the US.
You can forget Babesia testing in Europe. Very few labs do it - who knows what strain they are testing for - and who knows which strains we have here? As Babs is still considered rare (big mistake in my opinion) nobody is checking for it or even knows how to check for it. All the doctors know here about Babesia is that it's a very fulminant disease in Europe. I say there must be another type of Babesia which is causing a cronical, often subclinical, infection.
Hubby and myself got a negative test from a lab in Germany. Now, we also have the big problem to get an agressive enough therapy. We only get low dose therapy but even this is improving us.
You could make a try with artemisinin which you could order in the US. It shouldn't be taken alone to avoid resistancies and I think it's not strong enough when taken alone, but maybe you can manage to get an antibiotic with it. Another thing you could combine with it (together with the abx and the artemisinin) is e.g. chloroquine for Malaria.
We found it's absolutely no problem to get malaria meds if you tell the doctor that you are going to a tropical country and you need a prophylaxis. We are rotating doctors to avoid them getting suspicious about our frequent exotic travels There is also Riamet in Switzerland that you could get as a prophylaxis. It's said to be very good agains Babesia, also.
All the best Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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posted
chills, night sweats, anemia does indeed sound like babesia. Hope you can find treatment somehow. You can order artemisinin from this site. It's very reasonable:
It's best to take it with an antibiotic, just as you would with mepron.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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timaca
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Selma~
You might try going to www.lymediseaseassociation.org and looking at the lyme conference paragraph for doctors in your area. There are some doctors that spoke at the conference from Sweden and Germany. Perhaps they can point you in the direction of some LLMDs.
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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hardynaka
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Hi all, thanks a lot for the support. But what is the dose of Artemisinin I take a day and of chloroquine? And which antibiotics should I take (for how long)?
I may be able to find someone to prescribe me antibiotics but I need to know which works best and the dose/day.
Thanks a lot!! Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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for hubby, the best working antibiotic is Clindamycine. The dosage also depends on your weight, I think. He gets only 2x300 mgs a day but I think he should take more (78 kgs, don't know weight in lbs). Myself, I also got 2x300 mgs but my weight is only 46 kgs, so for me I find it okay.
For Artemisinin, I ramped up to 4x100 mgs per day over a few days. You have to watch your reaction - you can get herx reactions esp. in the beginning. Therefore, it is advisable to ramp up slowly. Hubby takes now 3x200 mgs without problems.
I think one should not take more than 600 mgs a day. We take it 5 days on and 3 days off. The reason is that it is said the body is producing an enzyme which makes the Artemisinin stop working. So, in the break this enzyme will disappear again and you can start again.
For the chloroquine I'm not sure myself. Our doctor who gave it to us the first time said we could take only two pills a week!!! which I find very little. But chloroquine can damage the retina and you could get blind. But I guess one has to take it in higher doses and for a longer time. But I really don't know.
Once we tried to take it every day but we had to give up after 5-6 days because it was very hard on us. He also said to have breaks from time to time of at least 3 weeks in between.
I hope the babs specialists of this board will come up with more precise info on dosages.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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Marnie
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Can lyme alone...or Bb...cause anemia?
YES.
Bb is "PFK dependent". A drop in PFK can cause anemia.
Are you co-infected? NOT NECESSARILY.
Night sweats can be caused by hormonal changes too.
Testing for the presence babesia before assuming it is the cause is in order.
hardynaka
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Hi, thanks to all your posts. - For Gabrielle and her quite precise description of drugs/ posology; - For Marnie on the info about PFK enzyme test (that could maybe help if they find me crazy to ask for a Bb test...) - For timaca, thanks for the link with the conference... Just wrote down the name of the German dr. for the future (who knows he knows about Bb?); and it's true that arthritis doesn't sound like anemy symptom! - And thanks Lymetutu, for the link to buy Artemisinin; - Dharma for the liver exams suggestions!
After the first iron injection the lyme dr. gave me I start to feel better concerning chills/ night sweats. But I wonder if I have to be having injections forever!
I mean, I suppose that if Bab is doing the mess, these iron injections would sound like taking 'aspirin' to heal from lyme...
I will try to suggest him about Bab next time I see him, but as I told you all, he doesn't want to give me abx even with positive exams for Borrelia burgd. + a few lyme symptoms, so why take the time (and a lot of money) to ask him to be tested for Bab ???
And as someone suggested here, there are no good labs here in Europe for testing for babs...
I am seriously thinking to go to my home country if my symptoms get worse, Brazil, which has few borreliosis cases, but at least there I will be able to find a doctor who is more open, for sure. The only problem I'll find no lyme specialist there.
Gotta go, thanks a lot for your support, you're always wonderful! Selma
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